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Background: The demand for children’s palliative care is increasingly urgent, with over 21 million children worldwide needing access, yet only 5–10% currently receiving it. Mapping the development of children’s palliative care is important in tracking progress and focusing priorities for future work. Methods: In 2023, a cross-sectional survey was conducted to assess the status of children’s palliative care globally, focusing on eight key indicators. Children’s palliative care experts and stakeholders were asked to evaluate the perceived levels of development in their countries across five defined levels, ranging from no known provision to broad integration into health care services. Efforts were made to engage non-responding countries. Regional palliative care associations were consulted to validate the results. Results: The survey was distributed to experts in 167/197 countries (85%), achieving data collection for 131 countries (78% of surveys sent). A total of 42% of countries (83) were at the lowest level of development (Level 1), while only 6% (11) of countries reached the highest level (Level 5), showing significant regional variation. An overall increase in children’s palliative care globally was seen, including significant movement between levels. Variations were seen between regions and across country income categories, providing insight to inform ongoing efforts in service development, advocacy, education, research and access to essential medicines. Conclusions: There has been global progress in children’s palliative care, although substantial gaps remain in access, particularly between high-income countries and low- and middle-income countries (LMICs). The study highlights the importance of a comprehensive approach to children’s palliative care, with advocacy and education and training programmes being crucial for sustainable development.

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.

BackgroundUnderstanding 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.ObjectiveThe aim of this systematic review is to critically evaluate how current literature has addressed WTP in relation to cancer treatment and achievement of outcomes.MethodsSeven 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.ResultsFifty-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.ConclusionThis 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.

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.

The need is actually becoming acute. Malaysia's healthcare scene is in dire need of experts and trained healthcare professionals in palliative care. At present, there is less than a handful of practising doctors in palliative care within the country. Not many local healthcare professionals seem to be interested to venture into palliative care in comparison to those overseas. Perhaps, acceptance of palliative care as a medical speciality is still relatively low, but things have improved considerably over the last three years. Hospis Malaysia is a charitable organisation, but we also need to address our financial well-being to be able to become an organisation that sets the standards of palliative care in Malaysia in services, education and training as well as research, and be a recognised resource centre that can be accessed by palliative care providers.