Understanding and meeting patient/caregiver preferences regarding end-of-life care

• +

  COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Rebecca Dent, Nesaretnam Barr Kumarakulasinghe, Lee Lai Heng, Irene Teo Eng Ai, Chetna Malhotra Semra Özdemir, Rahul Malhotra, Cheung Yin Bun, Nivedita Nadkarni, Alethea Yee, Grace Yang, Ravindran Kanesvaran, Patricia Yeo, Noreen Chan, Wu Huei Yaw, Chin Soh Mun, Hum Yin Mei Allyn, Wee Lee Yeo, Richard Harding

  Background:

  In Singapore, little is known about the experiences of patients with advanced cancer, such as quality of care received and how patients transition across different health care settings, or about the factors that influence patient and caregiver quality of life. This study, is a first-of-its-kind longitudinal study in Singapore to prospectively capture health care utilization, cost, quality of care and quality of life indicators for a sample of patients with advanced cancer, their primary informal caregivers and their physicians using both administrative and survey data collected until patient’s death.

  Objectives:

  The primary objective of this study is to describe trajectories of quality of life of patients with advanced cancer and their predictors, to describe the transitions between care settings for such patients and to quantify healthcare utilization and costs. Secondary objectives are to investigate preferences for diagnostic and prognostic information, preferences in end of life care, perceived quality of care, and to assess the areas of burden reported by caregivers over time as patients approach end of life.

  Design:

  Prospective study of patients with advanced cancer. 650 patients and their primary informal caregivers are followed every 3 months until death of patient. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Cancer Centre Singapore

  National University Hospital

  Implications:

  The results from this study will help assess patient and caregiver preferences for end-of-life care, perceived quality of communication with the physicians and the extent to which pain and other symptoms are adequately managed in patients. Each of these is a priority area identified in Singapore’s National Strategy for Palliative Care as having significant knowledge gaps.

  Publication/s

  Teo, I., Singh, R., Malhotra, C., Ozdemir, S., Dent, R. A., Kumarakulasinghe, N. B., Yeo, W. L., Cheung, Y. B., Malhotra, R., Kanesvaran, R., Yee, A., Chan, N., Wu, H. Y., Chin, S. M., Allyn, H., Yang, G. M., Neo, P., Nadkarni, N. V., Harding, R., & Finkelstein, E. A. (2018). Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol. BMC cancer, 18(1), 459

  Ozdemir, S., Malhotra, C., Teo, I., Yang, G. M., Kanesvaran, R., Yee, A. C., & Finkelstein, E. A. (2019). Palliative Care Awareness Among Advanced Cancer Patients and Their Family Caregivers in Singapore. Ann Acad Med Singapore, 48, 241-6.

  Teo, I., Baid, D., Ozdemir, S., Malhotra, C., Singh, R., Harding, R., Malhotra, R., Yang, M.G., Neo, S.H., Cheung, Y.B., & Neo PS (2019). Family caregivers of advanced cancer patients: self-perceived competency and meaning-making. BMJ Supportive & Palliative Care.

  Malhotra, C., Harding, R., Teo, I., Ozdemir, S., Koh, G. C., Neo, P., Lee, L.H., Kanesvaran, R., & Finkelstein, E.A. (2019). Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study. Supportive Care in Cancer, 1-9.

  Presentation/s

  Webinar 31 August 2020

  S.No	Title	PDF / Video link
  1	COMPASS Study Webinar Part 1: Introduction Prof Eric Andrew Finkelstein gives a short introduction of the COMPASS Cohort Study.	https://youtu.be/ScZcW3hFyog
  2	COMPASS Study Webinar Part 2: Asst Prof Semra Ozdemir Asst Prof Semra Ozdemir discusses the following topics: Awareness of palliative care services Discordance between experienced and preferred role in decision making	https://youtu.be/F92OWade03g
  3	COMPASS Study Webinar Part 3: Asst Prof Chetna Malhotra Asst Prof Chetna Malhotra discusses the following topics: Instability in preferences for end of life care End-of-life suffering	https://youtu.be/ZU5r9_KeRok
  4	COMPASS Study Webinar Part 4: Asst Prof Irene Teo Asst Prof Irene Teo discusses the following topics: Caregiving for advanced cancer patients: Psychological outcomes and protective factors Bereavement adjustment of caregivers	https://youtu.be/o5fld0wjMLA
  5	COMPASS Study Webinar Part 5: Prof Eric Andrew Finkelstein Prof Eric Andrew Finkelstein talks about healthcare costs at the end-of-life.	https://youtu.be/GhlZvV_KGpQ
  6	Presentation slides	Webinar Slide Deck (pdf)
  7	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  18 January 2016

  Contact Person:

  Ng Jin Ying: jinying.ng@duke-nus.edu.sg

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  SCOPAH: Singapore Cohort of Patients with Advanced Heart Failure

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Than Aung, Yeo Khung Keong, , Chetna Malhotra, Semra Özdemir, Irene Teo Eng Ai, Nivedita Nadkarni

  Background:

  Chronic heart failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end of life experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

  Objectives:

  The objective of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients.

  Design:

  Prospective study of patients with advanced heart failure (New York Heart Association class III and IV). 250 patients and their primary informal caregivers are followed every 4 months for a period of two years or till they die, whichever is earlier. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  The results of the cohort study with patients with advanced CHF will be useful to better understand the role that patient, family, and health system characteristic play in determining health outcomes, utilization and costs of care and for identifying inappropriate use of services, quality improvement initiatives, resource allocation, and budgeting.

  Publication/s

  Malhotra C, Foo R, Singh R, Ozdemir S, Teo I, Sim D, Jaufeerally FR, Aung T, Yeo KK, Nadkarni N, Finkelstein E. Study protocol for a cohort study of patients with advanced heart failure in Singapore. BMJ Open (Accepted for publication, 3 August 2018)

  Project Start Date:

  1 October 2016

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

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  Impact of Advance Care Planning (ACP) on care of patients with heart failure: A randomized controlled trial

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Fazlur Rehman Jaufeerally, Eric Finkelstein, Yeo Khung Keong, Tan Poh Yong, Nadkarni Nivedita, Genevieve Wong, Tan Boon Cheng, Clarice Ng, Lim Jing Fen, Chuang Ya-Ting

  Background:

  Advance care planning (ACP) is considered to be one of the most promising interventions to enable patients with life limiting illnesses to receive treatment at the end of life according to their own preferences and to promote and of life conversations between patients and their health care providers. Singapore has launched several pilot programs for ACP, however, the effectiveness of ACP in meeting patient’s end of life care preferences has never been evaluated in the Asian context.

  Objectives:

  This study aims to assess whether patients receiving ACP have a greater likelihood of receiving end of life care consistent with their preferences compared to patients receiving usual care. In addition, we also compare health care expenditures, patient’s understanding of own illness, their participation in decision making, quality of life, anxiety and depression between those receiving ACP and those with usual care.

  Design:

  The design is a randomized control trial (RCT) of ACP versus normal care. A total of 282 patients with Class III and IV heart failure (New York Heart Association Functional Classification) are enrolled. Eligible patients are recruited and followed for one year or till they die, whichever is earlier, and interviewed every 4 months during this duration. Additionally, the study includes up to 1 caregiver per patient enrolled.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  If benefits of ACP are confirmed via the RCT proposed here, then it will help to promote acceptance of ACP among patients and health care providers across Singapore.

  Publication/s

  Malhotra, C., Sim, D. K. L., Jaufeerally, F., Vikas, N. N., Sim, G. W. C., Tan, B. C., ... & Fong, F. H. M. (2016). Impact of advance care planning on the care of patients with heart failure: study protocol for a randomized controlled trial. Trials, 17(1), 285.

  Project Start Date:

  1 February 2015

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  APPROACH: Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Özdemir, Chetna Malhotra, Irene Teo Eng Ai, Ssu Wynn Mon, Gayatri Palat, Ning Xiao Hong, Thushari Hapuarachchi, Sushma Bhatnagar, Anjum Khan Joad, Pham Nguyen Tuong, Rubayat Rahman, Lubna Mariam, Maria Fidelis Manalo, Rudi Putranto

  Background:

  As with many countries around the world, countries in Asia have experienced a shift in causes of death from infectious to chronic diseases, resulting in a protracted dying process that the current healthcare infrastructure, particularly in the low- and middle-income countries of the region, is struggling to address. Moreover, these countries do not have the adequate resources or infrastructure to provide the best available treatments or systematic coverage of basic palliative care and home based services.

  Objectives:

  The study aims to fill the knowledge gap of understanding advanced cancer patients’ quality of life and treatment relative to their expectations in this region.

  Design:

  Between 2016 and 2018, we conduct a one-time survey of 200 advanced cancer patients in each participating hospital in Asia. The core research domains aim to assess quality of life, quality of care, awareness and preferences for prognostic information, and involvement in treatment decision making. Additionally, patient’s use of complementary and alternative medicine, psychological distress, self-blame and social stigma are assessed according to their relevance in the subject country.

  We also conduct a structured interview with the site-PIs (proxy) of the institutions to assess the end of life and palliative care services/systems in place which helps in comparing the different types of institutions involved within and across countries and investigate how institutional characteristics are associated with patient health outcomes. The study is funded by Lien Centre for Palliative Care with support from Asia Pacific Hospice Palliative Care Network and the collaborating institutions. To the best of our knowledge, this is the first study which aims to provide a cross-country comparison of end-of-life care services for cancer patients in middle and low-income countries in Asia.

  Study sites:

  The survey is conducted in collaboration with 12 investigators from institutions across Bangladesh, China, India, Indonesia, Sri Lanka, Myanmar, the Philippines, and Vietnam.

  Implications:

  The study primarily has implications for increasing the standard of palliative care in the low- and middle income countries in Asia. The findings from this study will be helpful for policy makers to identify the key areas for improvement of end-of-life care within and across countries.

  Presentation/s

  25 September 2020

  S.No	Title	PDF / Video link
  1	The APPROACH Study (Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health).	https://youtu.be/bGKItTV0Y9g
  2	Presentation slides	Webinar Slide Deck (pdf)
  3	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  January 2015

  Contact Person:

  Bairavi Joann: gmsbj@nus.edu.sg

• +

  SHAPE: Survival expectations and Hope Among Cancer Patients at End-of-Life

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Ravindran Kanesvaran, Lee Lai Heng, Chetna Malhotra, Yin Bun Cheung, Wong Gee Chuan, Toh Chee Keong

  Background:

  The extent to which physicians are conveying prognostic information to late stage cancer patients in Singapore remains an open question. Even if accurately conveyed, the extent to which patients internalize this information is also unknown, nor is it clear which patients would benefit from greater efforts to convey this information. This study aims to address these gaps in efforts to improve the end of life experience for cancer patients in Singapore. We will quantify the hope/belief gap and identify strategies that will allow for tailoring physician-patient communication in efforts to ensure that patients receive the right level of prognostic information consistent with their preferences.

  Objectives:

  The primary aim of this study is to attempt to discern patient’s beliefs about their prognosis independent of hope. Secondary aims are to explore whether and how patients like to receive prognostic information and the percentage of patients who received the information the way they would have liked, and to identify factors that influence patient’s beliefs about their prognosis.

  Design:

  This is a cross-sectional study of 200 patients with advanced Stage IV solid cancer and/or advanced stage of leukaemia or lymphoma cancer with expected survival of less than one year. Eligible patients are recruited from National Cancer Centre and Singapore General Hospital. Following an informed consent, patients are randomized to receive one of the two sets of the survey questionnaire, which differ in how the prognostic questions are asked. Set A includes prognosis questions similar to those used in prior studies. Set B is identical to Set A but incorporates an incentive compatible strategy where a reward is offered for ‘correct’ answers, as determined by their treating physician’s prediction.

  Study sites:

  National Cancer Centre Singapore

  Singapore General Hospital

  Implications:

  The potential large benefit of this study is that this may ultimately lead to improved understanding of patient beliefs, how patients would like to receive prognostic information, and identifying strategies to convey that information as clearly and concisely as possible.

  Project Start Date:

  11 May 2017

  Contact Person:

  Rachel Ong: rachel.ong@duke-nus.edu.sg

• +

  PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin

  Background:

  Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.

  Objectives:

  The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.

  Design:

  This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.

  Study sites:

  Singapore General Hospital

  Changi General Hospital

  Khoo Teck Puat Hospital

  Institute of Mental Health

  Jurong Community Hospital

  St Luke’s Hospital

  Care for the Elderly Foundation

  Tsao Foundation

  Alzheimer’s Disease Association

  Implications:

  The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.

  Project Start Date:

  12 October 2017

  Contact Person:

  Jing Rong Yong: jingrong.yong@duke-nus.edu.sg

• +

  RETREAT: Tailoring Health Communication Materials to Improve Decision Making of Elderly ESKD Patients

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Ozdemir, Lina Choong Hui Lin, Helena Legido-Quigley, Chetna Malhotra, Sheryl Gan Shien Wen, Tazeen H.Jafar, Alethea Yee Chung Pheng, Cheung Yin Bun

  Background:

  Literature suggests that dialysis prolongs survival for younger and healthier patients with end stage kidney disease (ESKD). However, for elderly patients with comorbidities, dialysis may offer little to no survival benefits compared to kidney supportive care (KSC). Dialysis is also associated with greater costs, greater rates of hospitalization, and lower quality of life. Yet, most elderly patients in Singapore undergo dialysis. It is our contention that elderly patients (and their family caregivers) are making treatment choices without full comprehensive information on the various available treatments. One of these reasons is that current counselling material is not tailored to older adults and does not sufficiently incorporate comparisons between dialysis and KSC.

  Objectives:

  The objective of this research is to develop a patient decision aid (comprising of a booklet and video with patient testimonials) to help elderly ESKD patients to make an informed treatment choice that is consistent with their preferences, and subsequently test the effectiveness of the decision aid via a Phase II trial. For more information on the study, click here.

  Study sites:

  Singapore General Hospital

  Implications:

  The study ultimately aims to lead to the development of improved counselling material to be used as a patient decision aid, especially for elderly ESKD patients, which may allow the patients and family caregivers to make treatment choices with full information on the costs and benefits of the various treatment options.

  Project Start Date:

  12 October 2017

  Contact Person:

  Padmini: padmini@duke-nus.edu.sg

  Germaine Tan: germaine_tan@duke-nus.edu.sg

Pain and symptom management at the end of life

• +

  COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Rebecca Dent, Nesaretnam Barr Kumarakulasinghe, Lee Lai Heng, Irene Teo Eng Ai, Chetna Malhotra Semra Özdemir, Rahul Malhotra, Cheung Yin Bun, Nivedita Nadkarni, Alethea Yee, Grace Yang, Ravindran Kanesvaran, Patricia Yeo, Noreen Chan, Wu Huei Yaw, Chin Soh Mun, Hum Yin Mei Allyn, Wee Lee Yeo, Richard Harding

  Background:

  In Singapore, little is known about the experiences of patients with advanced cancer, such as quality of care received and how patients transition across different health care settings, or about the factors that influence patient and caregiver quality of life. This study, is a first-of-its-kind longitudinal study in Singapore to prospectively capture health care utilization, cost, quality of care and quality of life indicators for a sample of patients with advanced cancer, their primary informal caregivers and their physicians using both administrative and survey data collected until patient’s death.

  Objectives:

  The primary objective of this study is to describe trajectories of quality of life of patients with advanced cancer and their predictors, to describe the transitions between care settings for such patients and to quantify healthcare utilization and costs. Secondary objectives are to investigate preferences for diagnostic and prognostic information, preferences in end of life care, perceived quality of care, and to assess the areas of burden reported by caregivers over time as patients approach end of life.

  Design:

  Prospective study of patients with advanced cancer. 650 patients and their primary informal caregivers are followed every 3 months until death of patient. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Cancer Centre Singapore

  National University Hospital

  Implications:

  The results from this study will help assess patient and caregiver preferences for end-of-life care, perceived quality of communication with the physicians and the extent to which pain and other symptoms are adequately managed in patients. Each of these is a priority area identified in Singapore’s National Strategy for Palliative Care as having significant knowledge gaps.

  Publication/s

  Teo, I., Singh, R., Malhotra, C., Ozdemir, S., Dent, R. A., Kumarakulasinghe, N. B., Yeo, W. L., Cheung, Y. B., Malhotra, R., Kanesvaran, R., Yee, A., Chan, N., Wu, H. Y., Chin, S. M., Allyn, H., Yang, G. M., Neo, P., Nadkarni, N. V., Harding, R., & Finkelstein, E. A. (2018). Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol. BMC cancer, 18(1), 459

  Ozdemir, S., Malhotra, C., Teo, I., Yang, G. M., Kanesvaran, R., Yee, A. C., & Finkelstein, E. A. (2019). Palliative Care Awareness Among Advanced Cancer Patients and Their Family Caregivers in Singapore. Ann Acad Med Singapore, 48, 241-6.

  Teo, I., Baid, D., Ozdemir, S., Malhotra, C., Singh, R., Harding, R., Malhotra, R., Yang, M.G., Neo, S.H., Cheung, Y.B., & Neo PS (2019). Family caregivers of advanced cancer patients: self-perceived competency and meaning-making. BMJ Supportive & Palliative Care.

  Malhotra, C., Harding, R., Teo, I., Ozdemir, S., Koh, G. C., Neo, P., Lee, L.H., Kanesvaran, R., & Finkelstein, E.A. (2019). Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study. Supportive Care in Cancer, 1-9.

  Presentation/s

  Webinar 31 August 2020

  S.No	Title	PDF / Video link
  1	COMPASS Study Webinar Part 1: Introduction Prof Eric Andrew Finkelstein gives a short introduction of the COMPASS Cohort Study.	https://youtu.be/ScZcW3hFyog
  2	COMPASS Study Webinar Part 2: Asst Prof Semra Ozdemir Asst Prof Semra Ozdemir discusses the following topics: Awareness of palliative care services Discordance between experienced and preferred role in decision making	https://youtu.be/F92OWade03g
  3	COMPASS Study Webinar Part 3: Asst Prof Chetna Malhotra Asst Prof Chetna Malhotra discusses the following topics: Instability in preferences for end of life care End-of-life suffering	https://youtu.be/ZU5r9_KeRok
  4	COMPASS Study Webinar Part 4: Asst Prof Irene Teo Asst Prof Irene Teo discusses the following topics: Caregiving for advanced cancer patients: Psychological outcomes and protective factors Bereavement adjustment of caregivers	https://youtu.be/o5fld0wjMLA
  5	COMPASS Study Webinar Part 5: Prof Eric Andrew Finkelstein Prof Eric Andrew Finkelstein talks about healthcare costs at the end-of-life.	https://youtu.be/GhlZvV_KGpQ
  6	Presentation slides	Webinar Slide Deck (pdf)
  7	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  18 January 2016

  Contact Person:

  Ng Jin Ying: jinying.ng@duke-nus.edu.sg

• +

  SCOPAH: Singapore Cohort of Patients with Advanced Heart Failure

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Than Aung, Yeo Khung Keong, , Chetna Malhotra, Semra Özdemir, Irene Teo Eng Ai, Nivedita Nadkarni

  Background:

  Chronic heart failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end of life experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

  Objectives:

  The objective of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients.

  Design:

  Prospective study of patients with advanced heart failure (New York Heart Association class III and IV). 250 patients and their primary informal caregivers are followed every 4 months for a period of two years or till they die, whichever is earlier. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  The results of the cohort study with patients with advanced CHF will be useful to better understand the role that patient, family, and health system characteristic play in determining health outcomes, utilization and costs of care and for identifying inappropriate use of services, quality improvement initiatives, resource allocation, and budgeting.

  Publication/s

  Malhotra C, Foo R, Singh R, Ozdemir S, Teo I, Sim D, Jaufeerally FR, Aung T, Yeo KK, Nadkarni N, Finkelstein E. Study protocol for a cohort study of patients with advanced heart failure in Singapore. BMJ Open (Accepted for publication, 3 August 2018)

  Project Start Date:

  1 October 2016

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  APPROACH: Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Özdemir, Chetna Malhotra, Irene Teo Eng Ai, Ssu Wynn Mon, Gayatri Palat, Ning Xiao Hong, Thushari Hapuarachchi, Sushma Bhatnagar, Anjum Khan Joad, Pham Nguyen Tuong, Rubayat Rahman, Lubna Mariam, Maria Fidelis Manalo, Rudi Putranto

  Background:

  As with many countries around the world, countries in Asia have experienced a shift in causes of death from infectious to chronic diseases, resulting in a protracted dying process that the current healthcare infrastructure, particularly in the low- and middle-income countries of the region, is struggling to address. Moreover, these countries do not have the adequate resources or infrastructure to provide the best available treatments or systematic coverage of basic palliative care and home based services.

  Objectives:

  The study aims to fill the knowledge gap of understanding advanced cancer patients’ quality of life and treatment relative to their expectations in this region.

  Design:

  Between 2016 and 2018, we conduct a one-time survey of 200 advanced cancer patients in each participating hospital in Asia. The core research domains aim to assess quality of life, quality of care, awareness and preferences for prognostic information, and involvement in treatment decision making. Additionally, patient’s use of complementary and alternative medicine, psychological distress, self-blame and social stigma are assessed according to their relevance in the subject country.

  We also conduct a structured interview with the site-PIs (proxy) of the institutions to assess the end of life and palliative care services/systems in place which helps in comparing the different types of institutions involved within and across countries and investigate how institutional characteristics are associated with patient health outcomes. The study is funded by Lien Centre for Palliative Care with support from Asia Pacific Hospice Palliative Care Network and the collaborating institutions. To the best of our knowledge, this is the first study which aims to provide a cross-country comparison of end-of-life care services for cancer patients in middle and low-income countries in Asia.

  Study sites:

  The survey is conducted in collaboration with 12 investigators from institutions across Bangladesh, China, India, Indonesia, Sri Lanka, Myanmar, the Philippines, and Vietnam.

  Implications:

  The study primarily has implications for increasing the standard of palliative care in the low- and middle income countries in Asia. The findings from this study will be helpful for policy makers to identify the key areas for improvement of end-of-life care within and across countries.

  Presentation/s

  25 September 2020

  S.No	Title	PDF / Video link
  1	The APPROACH Study (Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health).	https://youtu.be/bGKItTV0Y9g
  2	Presentation slides	Webinar Slide Deck (pdf)
  3	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  January 2015

  Contact Person:

  Bairavi Joann: gmsbj@nus.edu.sg

• +

  PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin

  Background:

  Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.

  Objectives:

  The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.

  Design:

  This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.

  Study sites:

  Singapore General Hospital

  Changi General Hospital

  Khoo Teck Puat Hospital

  Institute of Mental Health

  Jurong Community Hospital

  St Luke’s Hospital

  Care for the Elderly Foundation

  Tsao Foundation

  Alzheimer’s Disease Association

  Implications:

  The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.

  Project Start Date:

  12 October 2017

  Contact Person:

  Jing Rong Yong: jingrong.yong@duke-nus.edu.sg

• +

  RETREAT: Tailoring Health Communication Materials to Improve Decision Making of Elderly ESRD Patients

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Ozdemir, Lina Choong Hui Lin, Helena Legido-Quigley, Chetna Malhotra, Sheryl Gan Shien Wen, Tazeen H.Jafar, Alethea Yee Chung Pheng, Cheung Yin Bun

  Background:

  Literature suggests that dialysis prolongs survival for younger and healthier patients with end stage kidney disease (ESKD). However, for elderly patients with comorbidities, dialysis may offer little to no survival benefits compared to kidney supportive care (KSC). Dialysis is also associated with greater costs, greater rates of hospitalization, and lower quality of life. Yet, most elderly patients in Singapore undergo dialysis. It is our contention that elderly patients (and their family caregivers) are making treatment choices without full comprehensive information on the various available treatments. One of these reasons is that current counselling material is not tailored to older adults and does not sufficiently incorporate comparisons between dialysis and KSC.

  Objectives:

  The objective of this research is to develop a patient decision aid (comprising of a booklet and video with patient testimonials) to help elderly ESKD patients to make an informed treatment choice that is consistent with their preferences, and subsequently test the effectiveness of the decision aid via a Phase II trial. For more information on the study, click here.

  Study sites:

  Singapore General Hospital

  Implications:

  The study ultimately aims to lead to the development of improved counselling material to be used as a patient decision aid, especially for elderly ESKD patients, which may allow the patients and family caregivers to make treatment choices with full information on the costs and benefits of the various treatment options.

  Project Start Date:

  12 October 2017

  Contact Person:

  Padmini: padmini@duke-nus.edu.sg

  Germaine Tan: germaine_tan@duke-nus.edu.sg

• +

  HIBISCUS: Feasibility and Acceptability of a Behavioral Symptom Management Program for Patients with Advanced Breast Cancer

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Yee Pin, Eric Finkelstein, Cheung Yin Bun, Lee Guek Eng, Grace Yang Meijuan

  Background:

  Up to two-thirds of women with advanced breast cancer experience significant symptom burden (e.g., distress, pain, fatigue), yet these symptoms are not adequately addressed. Cognitive behavioral therapy (CBT) protocols designed to teach patients strategies to improve their symptom management may be helpful in alleviating multiple symptoms. The efficacy of CBT protocols for reducing distinct symptoms in early-stage breast cancer has been shown in Western countries; however the role of CBT protocols for multiple symptoms in late-stage cancer is less clear.

  Objectives:

  This study aims to investigate the feasibility and acceptability and obtain estimates of efficacy of a novel, cross-cultural multi-symptom (i.e., anxiety and depression, pain, fatigue) CBT protocol in advanced breast cancer patients. A randomized controlled design will compare patients receiving the CBT protocol to a waitlist control condition in both Singapore and US patients.

  Design:

  In Singapore, 40 participants who have received a diagnosis of stage IV breast cancer are recruited from the Division of Medical Oncology, National Cancer Center Singapore. Eligible patients who consent to participate receive the standard care provided to advanced breast cancer patients. After completing the first study assessment, participants are randomized in equal ratio to: 1) the 4-session CBT protocol (CBT), conducted with a psychologist, with each session lasting 50 minutes or (2) the waitlist control (WLC) group. Both groups of participants (CBT and WLC) are assessed approximately 6 weeks following randomization. Participants in the WLC group are given the option to receive the same CBT protocol thereafter and will complete the same assessment after completing the intervention.

  Study sites:

  National Cancer Centre Singapore

  Implications:

  This study will have important implications on palliative healthcare delivery, with stakeholders that include clinicians to policy-makers, as there currently are no set or defined standards for psychosocial care for patients receiving oncologic supportive services. The Singapore population is ageing, (e.g., individuals age 65 and above is expected to constitute approximately 20% of the) and as the rates of cancer continue to rise, we expect the number of individuals needing psychosocial support as part of healthcare services for cancer to increase in the coming years; thus this research is relevant and timely.

  Project Start Date:

  17 May 2016

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

• +

  EPIC: The Feasibility and Acceptability of a Psychosocial Intervention for Advanced Colorectal Cancer Patients

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Kwong Wei Emile John, Eric Finkelstein, Cheung Yin Bun, Tan Yee Pin, Ong Yew Kuang Simon, Choo Su Pin, Tan Bee Huat Iain, Yang Meijuan Grace

  Background:

  Studies have reported about one-third to half of advanced cancer patients experience psychological distress yet the mental healthcare needs of these patients are not properly assessed and addressed. Patients with advanced colorectal cancer can face unique challenges that are stoma- or bowel-related in addition to other symptom burden such as pain, fatigue, and existential distress that have deleterious consequences on their psychological and social functioning. This pilot study aims to test an intervention for patients with advanced colorectal cancer that incorporates culturally-appropriate topics. Using a randomized selection design, we will investigate the feasibility and acceptability of the intervention and obtain an initial estimate of efficacy of the intervention.

  Objectives:

  The study aims are to investigate the feasibility and acceptability of a PBI designed for advanced colorectal patients implemented in a Singapore context. The intervention will be facilitated by clinical psychologists whose specialty area is psycho-oncology, so as to allow in-depth discussions about suffering associated with cancer and confrontation of end-of-life issues. The intervention will include a) therapeutic discussion on legacy building as a way to open discussion about fear of death; b) addressing changed family dynamics, which is important in an Asian context, and c) discussing adaptation to living with bowel-related issues that are a common cause of distress for this patient population. The overall aim of the study is to establish evidence-based programs for cancer survivors to enhance their quality of life.

  Design:

  60 patients are recruited from the Division of Medical Oncology, Dept of Psychosocial Oncology and Division of Palliative Medicine at National Cancer Centre Singapore and Singapore General Hospital within 18 months. Study participants are randomized into either the psycho–behavioural intervention arm (PBI), or waitlist control arm (WLC). Four intervention sessions (each lasting approximately 60 minutes) are conducted with a clinical psychologist in an outpatient setting at the Department of Psychosocial Oncology, NCCS.

  Study sites:

  National Cancer Centre Singapore

  Singapore General Hospital

  Implications:

  Cancer is the leading cause of death in Singapore, with colorectal cancer being one of the top diagnosed cancers in men and women. Research shows that one in four colorectal cancer cases are in the advanced/ terminal stage. Patients at this stage are likely dealing with suffering from difficult symptoms (e.g., pain), and emotional stress. Having access to psychological care programs at this time can be very important. These programs teach patients skills to cope with emotional stress and common symptoms (e.g., pain, tiredness) that allow patients to feel more in control of their situation.

  The changes in emotional stress during this time frame will help us understand how useful the program is to lower emotional stress of patients.

  Project Start Date:

  10 July 2017

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

Communication at the end of life

• +

  COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Rebecca Dent, Nesaretnam Barr Kumarakulasinghe, Lee Lai Heng, Irene Teo Eng Ai, Chetna Malhotra Semra Özdemir, Rahul Malhotra, Cheung Yin Bun, Nivedita Nadkarni, Alethea Yee, Grace Yang, Ravindran Kanesvaran, Patricia Yeo, Noreen Chan, Wu Huei Yaw, Chin Soh Mun, Hum Yin Mei Allyn, Wee Lee Yeo, Richard Harding

  Background:

  In Singapore, little is known about the experiences of patients with advanced cancer, such as quality of care received and how patients transition across different health care settings, or about the factors that influence patient and caregiver quality of life. This study, is a first-of-its-kind longitudinal study in Singapore to prospectively capture health care utilization, cost, quality of care and quality of life indicators for a sample of patients with advanced cancer, their primary informal caregivers and their physicians using both administrative and survey data collected until patient’s death.

  Objectives:

  The primary objective of this study is to describe trajectories of quality of life of patients with advanced cancer and their predictors, to describe the transitions between care settings for such patients and to quantify healthcare utilization and costs. Secondary objectives are to investigate preferences for diagnostic and prognostic information, preferences in end of life care, perceived quality of care, and to assess the areas of burden reported by caregivers over time as patients approach end of life.

  Design:

  Prospective study of patients with advanced cancer. 650 patients and their primary informal caregivers are followed every 3 months until death of patient. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Cancer Centre Singapore

  National University Hospital

  Implications:

  The results from this study will help assess patient and caregiver preferences for end-of-life care, perceived quality of communication with the physicians and the extent to which pain and other symptoms are adequately managed in patients. Each of these is a priority area identified in Singapore’s National Strategy for Palliative Care as having significant knowledge gaps.

  Publication/s

  Teo, I., Singh, R., Malhotra, C., Ozdemir, S., Dent, R. A., Kumarakulasinghe, N. B., Yeo, W. L., Cheung, Y. B., Malhotra, R., Kanesvaran, R., Yee, A., Chan, N., Wu, H. Y., Chin, S. M., Allyn, H., Yang, G. M., Neo, P., Nadkarni, N. V., Harding, R., & Finkelstein, E. A. (2018). Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol. BMC cancer, 18(1), 459

  Ozdemir, S., Malhotra, C., Teo, I., Yang, G. M., Kanesvaran, R., Yee, A. C., & Finkelstein, E. A. (2019). Palliative Care Awareness Among Advanced Cancer Patients and Their Family Caregivers in Singapore. Ann Acad Med Singapore, 48, 241-6.

  Teo, I., Baid, D., Ozdemir, S., Malhotra, C., Singh, R., Harding, R., Malhotra, R., Yang, M.G., Neo, S.H., Cheung, Y.B., & Neo PS (2019). Family caregivers of advanced cancer patients: self-perceived competency and meaning-making. BMJ Supportive & Palliative Care.

  Malhotra, C., Harding, R., Teo, I., Ozdemir, S., Koh, G. C., Neo, P., Lee, L.H., Kanesvaran, R., & Finkelstein, E.A. (2019). Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study. Supportive Care in Cancer, 1-9.

  Presentation/s

  Webinar 31 August 2020

  S.No	Title	PDF / Video link
  1	COMPASS Study Webinar Part 1: Introduction Prof Eric Andrew Finkelstein gives a short introduction of the COMPASS Cohort Study.	https://youtu.be/ScZcW3hFyog
  2	COMPASS Study Webinar Part 2: Asst Prof Semra Ozdemir Asst Prof Semra Ozdemir discusses the following topics: Awareness of palliative care services Discordance between experienced and preferred role in decision making	https://youtu.be/F92OWade03g
  3	COMPASS Study Webinar Part 3: Asst Prof Chetna Malhotra Asst Prof Chetna Malhotra discusses the following topics: Instability in preferences for end of life care End-of-life suffering	https://youtu.be/ZU5r9_KeRok
  4	COMPASS Study Webinar Part 4: Asst Prof Irene Teo Asst Prof Irene Teo discusses the following topics: Caregiving for advanced cancer patients: Psychological outcomes and protective factors Bereavement adjustment of caregivers	https://youtu.be/o5fld0wjMLA
  5	COMPASS Study Webinar Part 5: Prof Eric Andrew Finkelstein Prof Eric Andrew Finkelstein talks about healthcare costs at the end-of-life.	https://youtu.be/GhlZvV_KGpQ
  6	Presentation slides	Webinar Slide Deck (pdf)
  7	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  18 January 2016

  Contact Person:

  Ng Jin Ying: jinying.ng@duke-nus.edu.sg

• +

  SCOPAH: Singapore Cohort of Patients with Advanced Heart Failure

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Than Aung, Yeo Khung Keong, , Chetna Malhotra, Semra Özdemir, Irene Teo Eng Ai, Nivedita Nadkarni

  Background:

  Chronic heart failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end of life experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

  Objectives:

  The objective of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients.

  Design:

  Prospective study of patients with advanced heart failure (New York Heart Association class III and IV). 250 patients and their primary informal caregivers are followed every 4 months for a period of two years or till they die, whichever is earlier. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  The results of the cohort study with patients with advanced CHF will be useful to better understand the role that patient, family, and health system characteristic play in determining health outcomes, utilization and costs of care and for identifying inappropriate use of services, quality improvement initiatives, resource allocation, and budgeting.

  Publication/s

  Malhotra C, Foo R, Singh R, Ozdemir S, Teo I, Sim D, Jaufeerally FR, Aung T, Yeo KK, Nadkarni N, Finkelstein E. Study protocol for a cohort study of patients with advanced heart failure in Singapore. BMJ Open (Accepted for publication, 3 August 2018)

  Project Start Date:

  1 October 2016

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  Impact of Advance Care Planning (ACP) on care of patients with heart failure: A randomized controlled trial

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Fazlur Rehman Jaufeerally, Eric Finkelstein, Yeo Khung Keong, Tan Poh Yong, Nadkarni Nivedita, Genevieve Wong, Tan Boon Cheng, Clarice Ng, Lim Jing Fen, Chuang Ya-Ting

  Background:

  Advance care planning (ACP) is considered to be one of the most promising interventions to enable patients with life limiting illnesses to receive treatment at the end of life according to their own preferences and to promote and of life conversations between patients and their health care providers. Singapore has launched several pilot programs for ACP, however, the effectiveness of ACP in meeting patient’s end of life care preferences has never been evaluated in the Asian context.

  Objectives:

  This study aims to assess whether patients receiving ACP have a greater likelihood of receiving end of life care consistent with their preferences compared to patients receiving usual care. In addition, we also compare health care expenditures, patient’s understanding of own illness, their participation in decision making, quality of life, anxiety and depression between those receiving ACP and those with usual care.

  Design:

  The design is a randomized control trial (RCT) of ACP versus normal care. A total of 282 patients with Class III and IV heart failure (New York Heart Association Functional Classification) are enrolled. Eligible patients are recruited and followed for one year or till they die, whichever is earlier, and interviewed every 4 months during this duration. Additionally, the study includes up to 1 caregiver per patient enrolled.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  If benefits of ACP are confirmed via the RCT proposed here, then it will help to promote acceptance of ACP among patients and health care providers across Singapore.

  Publication/s

  Malhotra, C., Sim, D. K. L., Jaufeerally, F., Vikas, N. N., Sim, G. W. C., Tan, B. C., ... & Fong, F. H. M. (2016). Impact of advance care planning on the care of patients with heart failure: study protocol for a randomized controlled trial. Trials, 17(1), 285.

  Project Start Date:

  1 February 2015

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  APPROACH: Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Özdemir, Chetna Malhotra, Irene Teo Eng Ai, Ssu Wynn Mon, Gayatri Palat, Ning Xiao Hong, Thushari Hapuarachchi, Sushma Bhatnagar, Anjum Khan Joad, Pham Nguyen Tuong, Rubayat Rahman, Lubna Mariam, Maria Fidelis Manalo, Rudi Putranto

  Background:

  As with many countries around the world, countries in Asia have experienced a shift in causes of death from infectious to chronic diseases, resulting in a protracted dying process that the current healthcare infrastructure, particularly in the low- and middle-income countries of the region, is struggling to address. Moreover, these countries do not have the adequate resources or infrastructure to provide the best available treatments or systematic coverage of basic palliative care and home based services.

  Objectives:

  The study aims to fill the knowledge gap of understanding advanced cancer patients’ quality of life and treatment relative to their expectations in this region.

  Design:

  Between 2016 and 2018, we conduct a one-time survey of 200 advanced cancer patients in each participating hospital in Asia. The core research domains aim to assess quality of life, quality of care, awareness and preferences for prognostic information, and involvement in treatment decision making. Additionally, patient’s use of complementary and alternative medicine, psychological distress, self-blame and social stigma are assessed according to their relevance in the subject country.

  We also conduct a structured interview with the site-PIs (proxy) of the institutions to assess the end of life and palliative care services/systems in place which helps in comparing the different types of institutions involved within and across countries and investigate how institutional characteristics are associated with patient health outcomes. The study is funded by Lien Centre for Palliative Care with support from Asia Pacific Hospice Palliative Care Network and the collaborating institutions. To the best of our knowledge, this is the first study which aims to provide a cross-country comparison of end-of-life care services for cancer patients in middle and low-income countries in Asia.

  Study sites:

  The survey is conducted in collaboration with 12 investigators from institutions across Bangladesh, China, India, Indonesia, Sri Lanka, Myanmar, the Philippines, and Vietnam.

  Implications:

  The study primarily has implications for increasing the standard of palliative care in the low- and middle income countries in Asia. The findings from this study will be helpful for policy makers to identify the key areas for improvement of end-of-life care within and across countries.

  Presentation/s

  25 September 2020

  S.No	Title	PDF / Video link
  1	The APPROACH Study (Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health).	https://youtu.be/bGKItTV0Y9g
  2	Presentation slides	Webinar Slide Deck (pdf)
  3	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  January 2015

  Contact Person:

  Bairavi Joann: gmsbj@nus.edu.sg

• +

  SHAPE: Survival expectations and Hope Among Cancer Patients at End-of-Life

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Ravindran Kanesvaran, Lee Lai Heng, Chetna Malhotra, Yin Bun Cheung, Wong Gee Chuan, Toh Chee Keong

  Background:

  The extent to which physicians are conveying prognostic information to late stage cancer patients in Singapore remains an open question. Even if accurately conveyed, the extent to which patients internalize this information is also unknown, nor is it clear which patients would benefit from greater efforts to convey this information. This study aims to address these gaps in efforts to improve the end of life experience for cancer patients in Singapore. We will quantify the hope/belief gap and identify strategies that will allow for tailoring physician-patient communication in efforts to ensure that patients receive the right level of prognostic information consistent with their preferences.

  Objectives:

  The primary aim of this study is to attempt to discern patient’s beliefs about their prognosis independent of hope. Secondary aims are to explore whether and how patients like to receive prognostic information and the percentage of patients who received the information the way they would have liked, and to identify factors that influence patient’s beliefs about their prognosis.

  Design:

  This is a cross-sectional study of 200 patients with advanced Stage IV solid cancer and/or advanced stage of leukaemia or lymphoma cancer with expected survival of less than one year. Eligible patients are recruited from National Cancer Centre and Singapore General Hospital. Following an informed consent, patients are randomized to receive one of the two sets of the survey questionnaire, which differ in how the prognostic questions are asked. Set A includes prognosis questions similar to those used in prior studies. Set B is identical to Set A but incorporates an incentive compatible strategy where a reward is offered for ‘correct’ answers, as determined by their treating physician’s prediction.

  Study sites:

  National Cancer Centre Singapore

  Singapore General Hospital

  Implications:

  The potential large benefit of this study is that this may ultimately lead to improved understanding of patient beliefs, how patients would like to receive prognostic information, and identifying strategies to convey that information as clearly and concisely as possible.

  Project Start Date:

  11 May 2017

  Contact Person:

  Rachel Ong: rachel.ong@duke-nus.edu.sg

• +

  PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin

  Background:

  Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.

  Objectives:

  The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.

  Design:

  This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.

  Study sites:

  Singapore General Hospital

  Changi General Hospital

  Khoo Teck Puat Hospital

  Institute of Mental Health

  Jurong Community Hospital

  St Luke’s Hospital

  Care for the Elderly Foundation

  Tsao Foundation

  Alzheimer’s Disease Association

  Implications:

  The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.

  Project Start Date:

  12 October 2017

  Contact Person:

  Jing Rong Yong: jingrong.yong@duke-nus.edu.sg

• +

  TEAMS: Training Oncologists and Empowering Patients in Affective Communication during Medical Consultations in Singapore – A pilot Study

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Ravindran Kanesvaran, Simon Ong, Alethea Yee Chung Pheng, Tanujaa D/O Rajasekaran

  Background:

  Patients diagnosed with advanced cancer and their caregivers experience tremendous psychological distress, often including anxiety, depression, fear, and anger. This psychological distress is correlated with poor quality of life, a desire to hasten death, increased health care utilization and poorer survival. Distress is often considered the sixth vital sign in cancer care. Oncologists who address psychological distress as part of routine cancer care and respond with empathy, reduce anxiety for the patients and caregivers and increase trust in oncologists.

  Objectives:

  The objective of this study is to develop a two-component intervention targeting patients and their oncologists to reduce communications gap during consultations. This study aims to assess the feasibility of the intervention program for oncologists to enhance their skills when communicating with their patients.

  Design:

  This is a pilot randomized controlled trial of 10 oncologists who are randomized to receive (intervention arm) or not receive (control arm). At least 4 consultations for each oncologist involving patients with Stage IV cancer are audio-recorded and patients are surveyed before and after their consultation.

  Study sites:

  National Cancer Centre Singapore

  Implications:

  The results of this study will be useful to assess the feasibility of the communication intervention.

  Project Start Date:

  1 March 2018

  Contact Person:

  Pauline Tan: pauline.tan@duke-nus.edu.sg

End-of-life care financing and delivery models

• +

  COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Rebecca Dent, Nesaretnam Barr Kumarakulasinghe, Lee Lai Heng, Irene Teo Eng Ai, Chetna Malhotra Semra Özdemir, Rahul Malhotra, Cheung Yin Bun, Nivedita Nadkarni, Alethea Yee, Grace Yang, Ravindran Kanesvaran, Patricia Yeo, Noreen Chan, Wu Huei Yaw, Chin Soh Mun, Hum Yin Mei Allyn, Wee Lee Yeo, Richard Harding

  Background:

  In Singapore, little is known about the experiences of patients with advanced cancer, such as quality of care received and how patients transition across different health care settings, or about the factors that influence patient and caregiver quality of life. This study, is a first-of-its-kind longitudinal study in Singapore to prospectively capture health care utilization, cost, quality of care and quality of life indicators for a sample of patients with advanced cancer, their primary informal caregivers and their physicians using both administrative and survey data collected until patient’s death.

  Objectives:

  The primary objective of this study is to describe trajectories of quality of life of patients with advanced cancer and their predictors, to describe the transitions between care settings for such patients and to quantify healthcare utilization and costs. Secondary objectives are to investigate preferences for diagnostic and prognostic information, preferences in end of life care, perceived quality of care, and to assess the areas of burden reported by caregivers over time as patients approach end of life.

  Design:

  Prospective study of patients with advanced cancer. 650 patients and their primary informal caregivers are followed every 3 months until death of patient. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Cancer Centre Singapore

  National University Hospital

  Implications:

  The results from this study will help assess patient and caregiver preferences for end-of-life care, perceived quality of communication with the physicians and the extent to which pain and other symptoms are adequately managed in patients. Each of these is a priority area identified in Singapore’s National Strategy for Palliative Care as having significant knowledge gaps.

  Publication/s

  Teo, I., Singh R., Malhotra C., Ozdemir S., Dent R.A., Kumarakulasinghe N.B., Yeo W.L., et al., (2018). Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol. BMC cancer 18, no. 1 (2018): 459

  Project Start Date:

  18 January 2016

  Contact Person:

  Ng Jin Ying: jinying.ng@duke-nus.edu.sg

• +

  SCOPAH: Singapore Cohort of Patients with Advanced Heart Failure

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Than Aung, Yeo Khung Keong, , Chetna Malhotra, Semra Özdemir, Irene Teo Eng Ai, Nivedita Nadkarni

  Background:

  Chronic heart failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end of life experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

  Objectives:

  The objective of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients.

  Design:

  Prospective study of patients with advanced heart failure (New York Heart Association class III and IV). 250 patients and their primary informal caregivers are followed every 4 months for a period of two years or till they die, whichever is earlier. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  The results of the cohort study with patients with advanced CHF will be useful to better understand the role that patient, family, and health system characteristic play in determining health outcomes, utilization and costs of care and for identifying inappropriate use of services, quality improvement initiatives, resource allocation, and budgeting.

  Publication/s

  Malhotra C, Foo R, Singh R, Ozdemir S, Teo I, Sim D, Jaufeerally FR, Aung T, Yeo KK, Nadkarni N, Finkelstein E. Study protocol for a cohort study of patients with advanced heart failure in Singapore. BMJ Open (Accepted for publication, 3 August 2018)

  Project Start Date:

  1 October 2016

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin

  Background:

  Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.

  Objectives:

  The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.

  Design:

  This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.

  Study sites:

  Singapore General Hospital

  Changi General Hospital

  Khoo Teck Puat Hospital

  Institute of Mental Health

  Jurong Community Hospital

  St Luke’s Hospital

  Care for the Elderly Foundation

  Tsao Foundation

  Alzheimer’s Disease Association

  Implications:

  The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.

  Project Start Date:

  12 October 2017

  Contact Person:

  Jing Rong Yong: jingrong.yong@duke-nus.edu.sg

Early and integrated palliative/supportive care models

• +

  COMPASS: Costs and Medical Care of Patients with Advanced Serious Illness in Singapore

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Rebecca Dent, Nesaretnam Barr Kumarakulasinghe, Lee Lai Heng, Irene Teo Eng Ai, Chetna Malhotra Semra Özdemir, Rahul Malhotra, Cheung Yin Bun, Nivedita Nadkarni, Alethea Yee, Grace Yang, Ravindran Kanesvaran, Patricia Yeo, Noreen Chan, Wu Huei Yaw, Chin Soh Mun, Hum Yin Mei Allyn, Wee Lee Yeo, Richard Harding

  Background:

  In Singapore, little is known about the experiences of patients with advanced cancer, such as quality of care received and how patients transition across different health care settings, or about the factors that influence patient and caregiver quality of life. This study, is a first-of-its-kind longitudinal study in Singapore to prospectively capture health care utilization, cost, quality of care and quality of life indicators for a sample of patients with advanced cancer, their primary informal caregivers and their physicians using both administrative and survey data collected until patient’s death.

  Objectives:

  The primary objective of this study is to describe trajectories of quality of life of patients with advanced cancer and their predictors, to describe the transitions between care settings for such patients and to quantify healthcare utilization and costs. Secondary objectives are to investigate preferences for diagnostic and prognostic information, preferences in end of life care, perceived quality of care, and to assess the areas of burden reported by caregivers over time as patients approach end of life.

  Design:

  Prospective study of patients with advanced cancer. 650 patients and their primary informal caregivers are followed every 3 months until death of patient. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Cancer Centre Singapore

  National University Hospital

  Implications:

  The results from this study will help assess patient and caregiver preferences for end-of-life care, perceived quality of communication with the physicians and the extent to which pain and other symptoms are adequately managed in patients. Each of these is a priority area identified in Singapore’s National Strategy for Palliative Care as having significant knowledge gaps.

  Publication/s

  Teo, I., Singh, R., Malhotra, C., Ozdemir, S., Dent, R. A., Kumarakulasinghe, N. B., Yeo, W. L., Cheung, Y. B., Malhotra, R., Kanesvaran, R., Yee, A., Chan, N., Wu, H. Y., Chin, S. M., Allyn, H., Yang, G. M., Neo, P., Nadkarni, N. V., Harding, R., & Finkelstein, E. A. (2018). Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol. BMC cancer, 18(1), 459

  Ozdemir, S., Malhotra, C., Teo, I., Yang, G. M., Kanesvaran, R., Yee, A. C., & Finkelstein, E. A. (2019). Palliative Care Awareness Among Advanced Cancer Patients and Their Family Caregivers in Singapore. Ann Acad Med Singapore, 48, 241-6.

  Teo, I., Baid, D., Ozdemir, S., Malhotra, C., Singh, R., Harding, R., Malhotra, R., Yang, M.G., Neo, S.H., Cheung, Y.B., & Neo PS (2019). Family caregivers of advanced cancer patients: self-perceived competency and meaning-making. BMJ Supportive & Palliative Care.

  Malhotra, C., Harding, R., Teo, I., Ozdemir, S., Koh, G. C., Neo, P., Lee, L.H., Kanesvaran, R., & Finkelstein, E.A. (2019). Financial difficulties are associated with greater total pain and suffering among patients with advanced cancer: results from the COMPASS study. Supportive Care in Cancer, 1-9.

  Presentation/s

  Webinar 31 August 2020

  S.No	Title	PDF / Video link
  1	COMPASS Study Webinar Part 1: Introduction Prof Eric Andrew Finkelstein gives a short introduction of the COMPASS Cohort Study.	https://youtu.be/ScZcW3hFyog
  2	COMPASS Study Webinar Part 2: Asst Prof Semra Ozdemir Asst Prof Semra Ozdemir discusses the following topics: Awareness of palliative care services Discordance between experienced and preferred role in decision making	https://youtu.be/F92OWade03g
  3	COMPASS Study Webinar Part 3: Asst Prof Chetna Malhotra Asst Prof Chetna Malhotra discusses the following topics: Instability in preferences for end of life care End-of-life suffering	https://youtu.be/ZU5r9_KeRok
  4	COMPASS Study Webinar Part 4: Asst Prof Irene Teo Asst Prof Irene Teo discusses the following topics: Caregiving for advanced cancer patients: Psychological outcomes and protective factors Bereavement adjustment of caregivers	https://youtu.be/o5fld0wjMLA
  5	COMPASS Study Webinar Part 5: Prof Eric Andrew Finkelstein Prof Eric Andrew Finkelstein talks about healthcare costs at the end-of-life.	https://youtu.be/GhlZvV_KGpQ
  6	Presentation slides	Webinar Slide Deck (pdf)
  7	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  18 January 2016

  Contact Person:

  Ng Jin Ying: jinying.ng@duke-nus.edu.sg

• +

  SCOPAH: Singapore Cohort of Patients with Advanced Heart Failure

  Principal Investigator:

  Eric Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  David Sim Kheng Leng, Than Aung, Yeo Khung Keong, , Chetna Malhotra, Semra Özdemir, Irene Teo Eng Ai, Nivedita Nadkarni

  Background:

  Chronic heart failure (CHF) is one of the leading causes of death in Singapore. Although it is well established that CHF patients in Singapore are less likely to be referred to palliative care services than cancer patients, little data is available on end of life experience of advanced CHF patients in Singapore, including the inter-relationships between patient decision-making, quality of life trajectories, and health and cost consequences.

  Objectives:

  The objective of this cohort study is to better understand the relationship between patient preferences, health care access, utilization, costs, and quality of life, and to identify strategies to improve the EOL experience for these patients.

  Design:

  Prospective study of patients with advanced heart failure (New York Heart Association class III and IV). 250 patients and their primary informal caregivers are followed every 4 months for a period of two years or till they die, whichever is earlier. Treating physicians of the patients are invited to take part in the study.

  Study sites:

  National Heart Centre Singapore

  Singapore General Hospital

  Implications:

  The results of the cohort study with patients with advanced CHF will be useful to better understand the role that patient, family, and health system characteristic play in determining health outcomes, utilization and costs of care and for identifying inappropriate use of services, quality improvement initiatives, resource allocation, and budgeting.

  Publication/s

  Malhotra C, Foo R, Singh R, Ozdemir S, Teo I, Sim D, Jaufeerally FR, Aung T, Yeo KK, Nadkarni N, Finkelstein E. Study protocol for a cohort study of patients with advanced heart failure in Singapore. BMJ Open (Accepted for publication, 3 August 2018)

  Project Start Date:

  1 October 2016

  Contact Person:

  Renette Foo: renette.foo@duke-nus.edu.sg

• +

  APPROACH: Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Özdemir, Chetna Malhotra, Irene Teo Eng Ai, Ssu Wynn Mon, Gayatri Palat, Ning Xiao Hong, Thushari Hapuarachchi, Sushma Bhatnagar, Anjum Khan Joad, Pham Nguyen Tuong, Rubayat Rahman, Lubna Mariam, Maria Fidelis Manalo, Rudi Putranto

  Background:

  As with many countries around the world, countries in Asia have experienced a shift in causes of death from infectious to chronic diseases, resulting in a protracted dying process that the current healthcare infrastructure, particularly in the low- and middle-income countries of the region, is struggling to address. Moreover, these countries do not have the adequate resources or infrastructure to provide the best available treatments or systematic coverage of basic palliative care and home based services.

  Objectives:

  The study aims to fill the knowledge gap of understanding advanced cancer patients’ quality of life and treatment relative to their expectations in this region.

  Design:

  Between 2016 and 2018, we conduct a one-time survey of 200 advanced cancer patients in each participating hospital in Asia. The core research domains aim to assess quality of life, quality of care, awareness and preferences for prognostic information, and involvement in treatment decision making. Additionally, patient’s use of complementary and alternative medicine, psychological distress, self-blame and social stigma are assessed according to their relevance in the subject country.

  We also conduct a structured interview with the site-PIs (proxy) of the institutions to assess the end of life and palliative care services/systems in place which helps in comparing the different types of institutions involved within and across countries and investigate how institutional characteristics are associated with patient health outcomes. The study is funded by Lien Centre for Palliative Care with support from Asia Pacific Hospice Palliative Care Network and the collaborating institutions. To the best of our knowledge, this is the first study which aims to provide a cross-country comparison of end-of-life care services for cancer patients in middle and low-income countries in Asia.

  Study sites:

  The survey is conducted in collaboration with 12 investigators from institutions across Bangladesh, China, India, Indonesia, Sri Lanka, Myanmar, the Philippines, and Vietnam.

  Implications:

  The study primarily has implications for increasing the standard of palliative care in the low- and middle income countries in Asia. The findings from this study will be helpful for policy makers to identify the key areas for improvement of end-of-life care within and across countries.

  Presentation/s

  25 September 2020

  S.No	Title	PDF / Video link
  1	The APPROACH Study (Asian Patient Perspectives Regarding Oncology Awareness, Care, and Health).	https://youtu.be/bGKItTV0Y9g
  2	Presentation slides	Webinar Slide Deck (pdf)
  3	Webinar flyer	Webinar Flyer (pdf)

  Project Start Date:

  January 2015

  Contact Person:

  Bairavi Joann: gmsbj@nus.edu.sg

• +

  PISCES: Panel study Investigating Status of Cognitively impaired Elderly in Singapore

  Principal Investigator:

  Chetna Malhotra, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Dennis Seow, Tan Lay Ling, Philip Yap, Janhavi Vaingankar, Tong Kamun, Tan Boon Yeow, Tham Weng Yew, Ng Wai Chong, Jason Foo, Eric Finkelstein, John Allen, Truls Ostbye, Rahul Malhotra, Ng Li Ling, Vanessa Mok, Alisson Sim, Ng Wei Fern, Wong Hon Khuan, Bharathi Balasundaram, Tan Rui Qi, Ong Pui Sim, Wee Shiou Liang, Richard Goveas, Tan Weng Mooi, Luo Danlin

  Background:

  Dementia affects 10% of the elderly population in Singapore. However, to date there is a lack of systematic information regarding end of life (EOL) care received by patients dying with severe dementia (PDSD), their EOL direct and indirect costs and caregiver burden. This study is a first-of-its-kind prospective Cohort Study in Singapore to assess comprehensively the care received by PDSD, the annual and EOL direct and indirect costs for PDSD as well as any influencing factors.

  Objectives:

  The study aims to assess comprehensively the care received by PDSD, the annual and end-of-life direct and indirect costs for PDSD as well as any influencing factors. We also aim to develop a comprehensive risk score to accurately predict 6-month mortality in community-dwelling PDSD.

  Design:

  This is a prospective study of primary informal caregivers taking care of patients with advanced dementia. 312 primary informal caregivers are followed every 4 months for 2 years, or until the patient passes away, and then post-death 8 weeks and 6 months to assess bereavement of the caregiver. Additionally, we conduct qualitative in-depth interviews with at least 10% of the recruited sample of the caregivers. Treating physicians are also invited to take part in the study.

  Study sites:

  Singapore General Hospital

  Changi General Hospital

  Khoo Teck Puat Hospital

  Institute of Mental Health

  Jurong Community Hospital

  St Luke’s Hospital

  Care for the Elderly Foundation

  Tsao Foundation

  Alzheimer’s Disease Association

  Implications:

  The results of this study will help to improve early decision making by caregivers regarding end-of-life care and physician referrals for palliative care services; and a better understanding of end-of-life care for PDSD and their caregivers that will lead to cross-sector collaborations to improve delivery of palliative care to PDSD. In the long term, this study will improve clinical and public health policy and has the potential to be the foundation for future initiatives for dementia care and improved social and medical infrastructure planning.

  Project Start Date:

  12 October 2017

  Contact Person:

  Jing Rong Yong: jingrong.yong@duke-nus.edu.sg

• +

  HIBISCUS: Feasibility and Acceptability of a Behavioral Symptom Management Program for Patients with Advanced Breast Cancer

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Yee Pin, Eric Finkelstein, Cheung Yin Bun, Lee Guek Eng, Grace Yang Meijuan

  Background:

  Up to two-thirds of women with advanced breast cancer experience significant symptom burden (e.g., distress, pain, fatigue), yet these symptoms are not adequately addressed. Cognitive behavioral therapy (CBT) protocols designed to teach patients strategies to improve their symptom management may be helpful in alleviating multiple symptoms. The efficacy of CBT protocols for reducing distinct symptoms in early-stage breast cancer has been shown in Western countries; however the role of CBT protocols for multiple symptoms in late-stage cancer is less clear.

  Objectives:

  This study aims to investigate the feasibility and acceptability and obtain estimates of efficacy of a novel, cross-cultural multi-symptom (i.e., anxiety and depression, pain, fatigue) CBT protocol in advanced breast cancer patients. A randomized controlled design will compare patients receiving the CBT protocol to a waitlist control condition in both Singapore and US patients.

  Design:

  In Singapore, 40 participants who have received a diagnosis of stage IV breast cancer are recruited from the Division of Medical Oncology, National Cancer Center Singapore. Eligible patients who consent to participate receive the standard care provided to advanced breast cancer patients. After completing the first study assessment, participants are randomized in equal ratio to: 1) the 4-session CBT protocol (CBT), conducted with a psychologist, with each session lasting 50 minutes or (2) the waitlist control (WLC) group. Both groups of participants (CBT and WLC) are assessed approximately 6 weeks following randomization. Participants in the WLC group are given the option to receive the same CBT protocol thereafter and will complete the same assessment after completing the intervention.

  Study sites:

  National Cancer Centre Singapore

  Implications:

  This study will have important implications on palliative healthcare delivery, with stakeholders that include clinicians to policy-makers, as there currently are no set or defined standards for psychosocial care for patients receiving oncologic supportive services. The Singapore population is ageing, (e.g., individuals age 65 and above is expected to constitute approximately 20% of the) and as the rates of cancer continue to rise, we expect the number of individuals needing psychosocial support as part of healthcare services for cancer to increase in the coming years; thus this research is relevant and timely.

  Project Start Date:

  17 May 2016

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

• +

  EPIC: The Feasibility and Acceptability of a Psychosocial Intervention for Advanced Colorectal Cancer Patients

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Kwong Wei Emile John, Eric Finkelstein, Cheung Yin Bun, Tan Yee Pin, Ong Yew Kuang Simon, Choo Su Pin, Tan Bee Huat Iain, Yang Meijuan Grace

  Background:

  Studies have reported about one-third to half of advanced cancer patients experience psychological distress yet the mental healthcare needs of these patients are not properly assessed and addressed. Patients with advanced colorectal cancer can face unique challenges that are stoma- or bowel-related in addition to other symptom burden such as pain, fatigue, and existential distress that have deleterious consequences on their psychological and social functioning. This pilot study aims to test an intervention for patients with advanced colorectal cancer that incorporates culturally-appropriate topics. Using a randomized selection design, we will investigate the feasibility and acceptability of the intervention and obtain an initial estimate of efficacy of the intervention.

  Objectives:

  The study aims are to investigate the feasibility and acceptability of a PBI designed for advanced colorectal patients implemented in a Singapore context. The intervention will be facilitated by clinical psychologists whose specialty area is psycho-oncology, so as to allow in-depth discussions about suffering associated with cancer and confrontation of end-of-life issues. The intervention will include a) therapeutic discussion on legacy building as a way to open discussion about fear of death; b) addressing changed family dynamics, which is important in an Asian context, and c) discussing adaptation to living with bowel-related issues that are a common cause of distress for this patient population. The overall aim of the study is to establish evidence-based programs for cancer survivors to enhance their quality of life.

  Design:

  60 patients are recruited from the Division of Medical Oncology, Dept of Psychosocial Oncology and Division of Palliative Medicine at National Cancer Centre Singapore and Singapore General Hospital within 18 months. Study participants are randomized into either the psycho–behavioural intervention arm (PBI), or waitlist control arm (WLC). Four intervention sessions (each lasting approximately 60 minutes) are conducted with a clinical psychologist in an outpatient setting at the Department of Psychosocial Oncology, NCCS.

  Study sites:

  National Cancer Centre Singapore

  Singapore General Hospital

  Implications:

  Cancer is the leading cause of death in Singapore, with colorectal cancer being one of the top diagnosed cancers in men and women. Research shows that one in four colorectal cancer cases are in the advanced/ terminal stage. Patients at this stage are likely dealing with suffering from difficult symptoms (e.g., pain), and emotional stress. Having access to psychological care programs at this time can be very important. These programs teach patients skills to cope with emotional stress and common symptoms (e.g., pain, tiredness) that allow patients to feel more in control of their situation.

  The changes in emotional stress during this time frame will help us understand how useful the program is to lower emotional stress of patients.

  Project Start Date:

  10 July 2017

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

• +

  RISE: Renewing Intimacy and Sexuality: A Pilot Program to Support Marital Intimacy and Sexual Health of Female Cancer Patients in Singapore

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tewani Komal, Eric Finkelstein, Semra Özdemir, Cheung Yin Bun, Lim Yong Kuei Timothy, Tan Yee Pin, Tan Jing Ying Tira

  Background:

  Disturbances in marital intimacy and sexual health is one of the most underrated and undertreated problems in cancer survivorship. A review on unmet supportive care needs of cancer patients noted one third to more than half of patients reported support for sexual disturbances as an area of unmet need during and after treatment. Patients whose sense of femininity and body image may be at risk, such as in the case of breast and gynaecological cancers, may be more susceptible to such intimacy and sexual disturbances. A prior study we conducted found 25% of gynaecologic cancer patients in Singapore reported dissatisfaction with their bodies and 19% reported feeling less sexually attractive. Unfortunately, there is paucity in formal resources for couples counselling within the oncology setting in Singapore.

  Objectives:

  The main aim of the study is to assess the RISE program, which consists of three 2-hour sessions facilitated within 6 weeks. Based on components of the RE-AIM framework for program planning, we assess the reach, acceptability, implementation, and (preliminary) effectiveness of the program.

  Design:

  50 patients are recruited from breast and gynaecologic cancer outpatient clinics at the National Centre and KK Hospital. Patients are considered eligible if they are 21 years old or above, have a romantic partner, have history of stage I-III gynaecologic/breast cancer, are at least 4 weeks post-active treatment, and meet screening cutoff for marital or sexual distress. Those who are interested in participating in the study are randomized to receive the RISE program or waitlisted standard care. The RISE Intervention consists of 3 sessions which last 2 hours each and is conducted with a clinical psychologist or medical social worker with experience in couples counseling.

  Study sites:

  National Cancer Centre Singapore

  KK Women's and Children's Hospital

  Implications:

  Marital and sexual health are important concerns of women as they undergo cancer treatment and transition to survivorship, however there are limited resources locally for women wanting to address these concerns. Patients whose sense of femininity and body image are undermined, as in the case of those with gynaecologic and breast cancers, are more susceptible to such intimacy and sexual disturbances. The results of this pilot intervention will allow investigators to establish whether a full-scale randomized clinical trial is warranted.

  Project Start Date:

  23 March 2018

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

Psychosocial interventions for patients and family caregivers

• +

  HIBISCUS: Feasibility and Acceptability of a Behavioral Symptom Management Program for Patients with Advanced Breast Cancer

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Yee Pin, Eric Finkelstein, Cheung Yin Bun, Lee Guek Eng, Grace Yang Meijuan

  Background:

  Up to two-thirds of women with advanced breast cancer experience significant symptom burden (e.g., distress, pain, fatigue), yet these symptoms are not adequately addressed. Cognitive behavioral therapy (CBT) protocols designed to teach patients strategies to improve their symptom management may be helpful in alleviating multiple symptoms. The efficacy of CBT protocols for reducing distinct symptoms in early-stage breast cancer has been shown in Western countries; however the role of CBT protocols for multiple symptoms in late-stage cancer is less clear.

  Objectives:

  This study aims to investigate the feasibility and acceptability and obtain estimates of efficacy of a novel, cross-cultural multi-symptom (i.e., anxiety and depression, pain, fatigue) CBT protocol in advanced breast cancer patients. A randomized controlled design will compare patients receiving the CBT protocol to a waitlist control condition in both Singapore and US patients.

  Design:

  In Singapore, 40 participants who have received a diagnosis of stage IV breast cancer are recruited from the Division of Medical Oncology, National Cancer Center Singapore. Eligible patients who consent to participate receive the standard care provided to advanced breast cancer patients. After completing the first study assessment, participants are randomized in equal ratio to: 1) the 4-session CBT protocol (CBT), conducted with a psychologist, with each session lasting 50 minutes or (2) the waitlist control (WLC) group. Both groups of participants (CBT and WLC) are assessed approximately 6 weeks following randomization. Participants in the WLC group are given the option to receive the same CBT protocol thereafter and will complete the same assessment after completing the intervention.

  Study sites:

  National Cancer Centre Singapore

  Implications:

  This study will have important implications on palliative healthcare delivery, with stakeholders that include clinicians to policy-makers, as there currently are no set or defined standards for psychosocial care for patients receiving oncologic supportive services. The Singapore population is ageing, (e.g., individuals age 65 and above is expected to constitute approximately 20% of the) and as the rates of cancer continue to rise, we expect the number of individuals needing psychosocial support as part of healthcare services for cancer to increase in the coming years; thus this research is relevant and timely.

  Project Start Date:

  17 May 2016

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

• +

  EPIC: The Feasibility and Acceptability of a Psychosocial Intervention for Advanced Colorectal Cancer Patients

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tan Kwong Wei Emile John, Eric Finkelstein, Cheung Yin Bun, Tan Yee Pin, Ong Yew Kuang Simon, Choo Su Pin, Tan Bee Huat Iain, Yang Meijuan Grace

  Background:

  Studies have reported about one-third to half of advanced cancer patients experience psychological distress yet the mental healthcare needs of these patients are not properly assessed and addressed. Patients with advanced colorectal cancer can face unique challenges that are stoma- or bowel-related in addition to other symptom burden such as pain, fatigue, and existential distress that have deleterious consequences on their psychological and social functioning. This pilot study aims to test an intervention for patients with advanced colorectal cancer that incorporates culturally-appropriate topics. Using a randomized selection design, we will investigate the feasibility and acceptability of the intervention and obtain an initial estimate of efficacy of the intervention.

  Objectives:

  The study aims are to investigate the feasibility and acceptability of a PBI designed for advanced colorectal patients implemented in a Singapore context. The intervention will be facilitated by clinical psychologists whose specialty area is psycho-oncology, so as to allow in-depth discussions about suffering associated with cancer and confrontation of end-of-life issues. The intervention will include a) therapeutic discussion on legacy building as a way to open discussion about fear of death; b) addressing changed family dynamics, which is important in an Asian context, and c) discussing adaptation to living with bowel-related issues that are a common cause of distress for this patient population. The overall aim of the study is to establish evidence-based programs for cancer survivors to enhance their quality of life.

  Design:

  60 patients are recruited from the Division of Medical Oncology, Dept of Psychosocial Oncology and Division of Palliative Medicine at National Cancer Centre Singapore and Singapore General Hospital within 18 months. Study participants are randomized into either the psycho–behavioural intervention arm (PBI), or waitlist control arm (WLC). Four intervention sessions (each lasting approximately 60 minutes) are conducted with a clinical psychologist in an outpatient setting at the Department of Psychosocial Oncology, NCCS.

  Study sites:

  National Cancer Centre Singapore

  Singapore General Hospital

  Implications:

  Cancer is the leading cause of death in Singapore, with colorectal cancer being one of the top diagnosed cancers in men and women. Research shows that one in four colorectal cancer cases are in the advanced/ terminal stage. Patients at this stage are likely dealing with suffering from difficult symptoms (e.g., pain), and emotional stress. Having access to psychological care programs at this time can be very important. These programs teach patients skills to cope with emotional stress and common symptoms (e.g., pain, tiredness) that allow patients to feel more in control of their situation.

  The changes in emotional stress during this time frame will help us understand how useful the program is to lower emotional stress of patients.

  Project Start Date:

  10 July 2017

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

• +

  RISE: Renewing Intimacy and Sexuality: A Pilot Program to Support Marital Intimacy and Sexual Health of Female Cancer Patients in Singapore

  Principal Investigator:

  Irene Teo Eng Ai, Assistant Professor, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Tewani Komal, Eric Finkelstein, Semra Özdemir, Cheung Yin Bun, Lim Yong Kuei Timothy, Tan Yee Pin, Tan Jing Ying Tira

  Background:

  Disturbances in marital intimacy and sexual health is one of the most underrated and undertreated problems in cancer survivorship. A review on unmet supportive care needs of cancer patients noted one third to more than half of patients reported support for sexual disturbances as an area of unmet need during and after treatment. Patients whose sense of femininity and body image may be at risk, such as in the case of breast and gynaecological cancers, may be more susceptible to such intimacy and sexual disturbances. A prior study we conducted found 25% of gynaecologic cancer patients in Singapore reported dissatisfaction with their bodies and 19% reported feeling less sexually attractive. Unfortunately, there is paucity in formal resources for couples counselling within the oncology setting in Singapore.

  Objectives:

  The main aim of the study is to assess the RISE program, which consists of three 2-hour sessions facilitated within 6 weeks. Based on components of the RE-AIM framework for program planning, we assess the reach, acceptability, implementation, and (preliminary) effectiveness of the program.

  Design:

  50 patients are recruited from breast and gynaecologic cancer outpatient clinics at the National Centre and KK Hospital. Patients are considered eligible if they are 21 years old or above, have a romantic partner, have history of stage I-III gynaecologic/breast cancer, are at least 4 weeks post-active treatment, and meet screening cutoff for marital or sexual distress. Those who are interested in participating in the study are randomized to receive the RISE program or waitlisted standard care. The RISE Intervention consists of 3 sessions which last 2 hours each and is conducted with a clinical psychologist or medical social worker with experience in couples counseling.

  Study sites:

  National Cancer Centre Singapore

  KK Women's and Children's Hospital

  Implications:

  Marital and sexual health are important concerns of women as they undergo cancer treatment and transition to survivorship, however there are limited resources locally for women wanting to address these concerns. Patients whose sense of femininity and body image are undermined, as in the case of those with gynaecologic and breast cancers, are more susceptible to such intimacy and sexual disturbances. The results of this pilot intervention will allow investigators to establish whether a full-scale randomized clinical trial is warranted.

  Project Start Date:

  23 March 2018

  Contact Person:

  Fang Ting Pan: pan.fang.ting@duke-nus.edu.sg

Patient decision aids

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  RETREAT: Tailoring Health Communication Materials to Improve Decision Making of Elderly ESRD Patients

  Principal Investigator:

  Eric A. Finkelstein, Director, Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore

  Study Team:

  Semra Ozdemir, Lina Choong Hui Lin, Helena Legido-Quigley, Chetna Malhotra, Sheryl Gan Shien Wen, Tazeen H.Jafar, Alethea Yee Chung Pheng, Cheung Yin Bun

  Background:

  Literature suggests that dialysis prolongs survival for younger and healthier patients with end stage kidney disease (ESKD). However, for elderly patients with comorbidities, dialysis may offer little to no survival benefits compared to kidney supportive care (KSC). Dialysis is also associated with greater costs, greater rates of hospitalization, and lower quality of life. Yet, most elderly patients in Singapore undergo dialysis. It is our contention that elderly patients (and their family caregivers) are making treatment choices without full comprehensive information on the various available treatments. One of these reasons is that current counselling material is not tailored to older adults and does not sufficiently incorporate comparisons between dialysis and KSC.

  Objectives:

  The objective of this research is to develop a patient decision aid (comprising of a booklet and video with patient testimonials) to help elderly ESKD patients to make an informed treatment choice that is consistent with their preferences, and subsequently test the effectiveness of the decision aid via a Phase II trial. For more information on the study, click here.

  Study sites:

  Singapore General Hospital

  Implications:

  The study ultimately aims to lead to the development of improved counselling material to be used as a patient decision aid, especially for elderly ESKD patients, which may allow the patients and family caregivers to make treatment choices with full information on the costs and benefits of the various treatment options.

  Project Start Date:

  12 October 2017

  Contact Person:

  Padmini: padmini@duke-nus.edu.sg

  Germaine Tan: germaine_tan@duke-nus.edu.sg

Quantification of Serious Health Suffering