A study conducted by researchers from Monash University Malaysia, Hospis Malaysia, and King’s College London, uncovered the nuanced impact of late-stage cancer diagnosis on patient’s daily living.
Globally, more than three-quarters of patients with late-stage cancer do not receive hospice or palliative care, with most of these unmet needs concentrated in low and middle-income countries (LMICs). This burden of suffering is particularly alarming in the Malaysian health system’s context because over 63% of cancer patients were diagnosed in advanced stages. Yet, access to palliative care was available to less than 10% of the population.
Additionally, Malaysian cancer patients may lack insight when making medical decisions, which can be attributed to the limited involvement of patients in shared decision-making within Asian culture. This study sheds light on this area, revealing that advanced cancer patients assigned significantly higher value to QoL improvements than to one-year survival (up to three times more for physical functioning and two times for good pain control). However, life extension only brings value to them when they can maintain at least moderate levels of functioning. When a follow-up was conducted three months later, patients were found to place increased importance on physical functioning and pain control.
During the interviews, many patients recounted enduring debilitating side effects of treatments, described as “destroying the remaining days” of their lives. Beyond physical impairments and reduced ability to work, younger patients, primarily females, expressed emotional distress when they could not fulfil their household responsibilities, including housekeeping and caring for children.
Alene Yong, Lead Researcher and PhD Student from the School of Pharmacy at Monash University Malaysia, believes the implications of this research reverberate across cancer care resource allocation and clinical practice. “This study has helped clinicians better understand patients’ preferences and highlighted the importance of constant communication with patients because their priorities change with time and disease progression,” said Alene, who conducted the research analysis during a placement at King’s College London.
According to Professor Dato’ Dr Kamarulzaman, President and Pro Vice-Chancellor of Monash University Malaysia, understanding the intricate dynamics between the quality of life and survival preferences of advanced cancer patients is paramount. “The collaborative research conducted by Monash University Malaysia, Hospis Malaysia, and King’s College London is a commendable endeavour that shines a light on a crucial aspect of palliative care. I encourage healthcare stakeholders, policymakers, and practitioners to take note of these crucial findings. Let us heed the call to action and prioritise not only extending life but improving its quality. This research is a significant step in that direction.”
Dr Ednin Hamzah, CEO of Hospis Malaysia and Chairperson of Asia Pacific Hospice Palliative Care Network, emphasised the significance of this research, “Understanding the factors and the trade-offs involved in QoL issues for cancer patients is important new evidence in Malaysia that can assist in clinical decision-making in cancer management.”
“These findings underscore not just the importance of providing palliative and supportive care for patients with advanced cancer to alleviate issues on physical functioning and pain, but also regularly involving patients in decisions about management of their advanced cancer,” added Ka Keat Lim, Research Fellow in Health Economics, School of Life Course & Population Sciences, Kings College London.