A Longitudinal Evaluation of the Preferences of Patients With Advanced Cancer for Quality of Life and Survival in Malaysia: A Discrete Choice Experiment.

OBJECTIVES: This study aims to quantify the preferences of patients with advanced cancer for quality of life (QoL) outcomes versus survival extension in Malaysia. The secondary aim of this study is to explore the change in preferences over time. METHODS: A discrete choice experiment was developed to include 7 attributes valued in cancer management: physical, psychological and social functioning, pain control, survival, place of death, and cost. Patients were recruited via convenience sampling from 2 Malaysian public hospitals. The survey questionnaire was administered to patients within 6 months of their cancer diagnosis with a follow-up 3 months later. Conditional logit regression was used to estimate the preference weight, relative attribute importance, and willingness to pay. RESULTS: One hundred valid responses were collected at baseline and 45 at follow-up. Respondents placed higher values on QoL improvements from severe to moderate or mild levels and to achieve home death over survival extension from 6 to 18 months. However, additional improvements (from moderate to mild) in some of the QoL outcomes were not valued as highly as life extension from 12 to 18 months, showing that it was vital for patients to avoid being in "severe" health dysfunction. Improving physical dysfunction from severe to mild yielded 3 times as much value as additional 1-year survival. After 3 months, the respondents' preferences changed significantly, with increased relative attribute importance of physical functioning, pain control, and cost. CONCLUSIONS: As QoL outcomes are valued more than survival, palliative care should be introduced as early as possible to alleviate suffering related to advanced cancer.

A qualitative study of lived experiences and needs of advanced cancer patients in Malaysia: Gaps and steps forward.

PURPOSE: Due to the high burden of cancer-related suffering, it is paramount to understand the gaps in cancer care that lead to suffering. Advanced cancer patients have unmet needs and challenges that differ from those with early-stage cancer due to the rapid disease progression. By exploring advanced cancer patients' lived experiences and needs from the physical, psychological, social, and spiritual aspects, this study aims to identify gaps in the Malaysian health system and propose contextualised measures to improve cancer care. METHODS: Semi-structured, in-depth interviews were conducted to explore advanced cancer patients' lived experiences and needs from the physical, psychological, social, and spiritual aspects. The interviews were then transcribed and coded. Themes were developed from the codes using iterative thematic approach. RESULTS: The lived experiences and needs of nineteen patients converged into four major themes: disruption to daily lives, psychosocial and spiritual support system, information needs, and financial needs. This study described predominantly how cancer impacted patients' lives and livelihood, how patients coped with their psychological conditions after diagnosis, the need for effective communication and trust in a multicultural society, and how finance affected access to and experience of cancer care. CONCLUSION: Advanced cancer patients had different needs beyond receiving medical treatments. A concerted effort is required from clinicians, allied health professionals, social workers, support groups, and family members to understand and fulfil these needs.

Providing End-of-Life Care in the Community: What Are the Challenges in Malaysia?

A 72-year-old woman with metastatic lung cancer to bone and brain and with left external iliac vein thrombosis was under the care of a community palliative care provider. She experienced an acute pain crisis due to acute limb ischemia of the left lower limb. Goals-of-care discussions were held with the patient and her family; she prioritized symptom control and end-of-life care at home. The family and patient were aware of her short prognosis. Her complex pain was managed by the community palliative team, and her family was empowered to give subcutaneous injections. We illustrate a case showing the importance of community health services with palliative care support in providing symptom management and support to patient and family caregivers throughout the course of a life-limiting illness. It also highlights family caregivers' potential psychological distress in delivering subcutaneous injections in terminal care for a patient at home.

Willingness-to-pay for cancer treatment and outcome: a systematic review.

BACKGROUND: Understanding patient preferences in cancer management is essential for shared decision-making. Patient or societal willingness-to-pay (WTP) for desired outcomes in cancer management represents their preferences and values of these outcomes. OBJECTIVE: The aim of this systematic review is to critically evaluate how current literature has addressed WTP in relation to cancer treatment and achievement of outcomes. METHODS: Seven databases were searched from inception until 2 March 2021 to include studies with primary data of WTP values for cancer treatments or achievement of outcomes that were elicited using stated preference methods. RESULTS: Fifty-four studies were included in this review. All studies were published after year 2000 and more than 90% of the studies were conducted in high-income countries. Sample size of the studies ranged from 35 to 2040, with patient being the most studied population. There was a near even distribution between studies using contingent valuation and discrete choice experiment. Based on the included studies, the highest WTP values were for a quality-adjusted life year (QALY) ($11,498-$589,822), followed by 1-year survival ($3-$198,576), quality of life (QoL) improvement ($5531-$139,499), and pain reduction ($79-$94,662). Current empirical evidence suggested that improvement in QoL and pain reduction had comparable weights to survival in cancer management. CONCLUSION: This systematic review provides a summary on stated preference studies that elicited patient preferences via WTP and summarised their respective values. Respondents in this review had comparable WTP for 1-year survival and QoL, suggesting that improvement in QoL should be emphasised together with survival in cancer management.

Preparedness to Face the COVID-19 Pandemic in Hospice and Palliative Care Services in the Asia-Pacific Region: A Rapid Online Survey.

BACKGROUND: Hospice and palliative care services provision for COVID-19 patients is crucial to improve their life quality. There is limited evidence on COVID-19 preparedness of such services in the Asia-Pacific region. AIM: To evaluate the preparedness and capacity of hospice and palliative care services in the Asia-Pacific region to respond to the COVID-19 pandemic. METHOD: An online cross-sectional survey was developed based on methodology guidance. Asia-Pacific Hospice and Palliative Care Network subscribers (n = 1551) and organizational members (n = 185) were emailed. Descriptive analysis was undertaken. RESULTS: Ninety-seven respondents completed the survey. Around half of services were hospital-based (n = 47, 48%), and public-funded (n = 46, 47%). Half of services reported to have confirmed cases (n = 47, 49%) and the majority of the confirmed cases were patients (n = 28, 61%). Staff perceived moderate risk of being infected by COVID-19 (median: 7/10). > 85% of respondents reported they had up-to-date contact list for staff and patients, one-third revealed challenges to keep record of relatives who visited the services (n = 30, 31%), and of patients visited in communities (n = 29, 30%). Majority of services (60%) obtained adequate resources for infection control except face mask. More than half had no guidance on Do Not Resuscitate orders (n = 59, 66%) or on bereavement care for family members (n = 44, 51%). CONCLUSION: Recommendations to strengthen the preparedness of palliative care services include: 1) improving the access to face mask; 2) acquiring stress management protocols for staff when unavailable; 3) reinforcing the contact tracing system for relatives and visits in the community and 4) developing guidance on patient and family care during patient's dying trajectory.

Dyspnea management in palliative home care: a case series in malaysia.

Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non-cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.