This project was based at the University of Malaya in Malaysia Overview Project title: To explore the palliative care needs of patients with chronic obstructive pulmonary disease Acute or chronic: Chronic Based at: University of Malaya Start date: August 2018 End date: January 2021 Principal investigator: Ee Ming Khoo Project team: Su May Liew, Hilary Pinnock, Sylvia McCarthy, Zee Nee Lim, Pang Yong Kek, Nik Sherina Nik Hanafi, Norita Hussein, Ahmad Ihsan Abu Bakar, Marilyn Kendall, Aziz Sheikh Background Chronic obstructive pulmonary disease (COPD) exerts great physical and psychological toll on the patient. Although there is medical treatment that can reduce symptom burden, for most patients the disease results in an inevitable gradual decline and premature death. Despite disease burden, the supportive and palliative needs of COPD are frequently unmet. In Malaysia, palliative services are available for those with cancer yet almost non-existent for those with severe organ failure such as COPD. It is not just the patients who lack awareness of the need for such services; many health care providers and policy makers also lack knowledge regarding this issue. Aim and impact The aim of the project is to investigate the views and experiences of patients with severe, potentially life-threatening COPD, their healthcare providers and policymakers with regards to provision of supportive and palliative care. Building on the existing understanding of end-of-life care needs of people with COPD, the study will also explore the gaps in existing care provision, the perceived barriers and facilitators, and begin to identify potential solutions in order to inform the development of supportive care provision in Malaysia. The findings will inform how the current service provision gap for this patient group may be addressed in order to meet their currently unmet needs. It has potential to inform palliative care guidelines in Malaysia and ultimately the quality of service provision for these patients. Key developments There are emerging themes from the patients’ perspective such as the progressive debilitating impact of the disease, in terms of physical suffering, financial hardship and social isolation; the helplessness felt by both doctors and patients on the lack of treatment; the poor awareness of palliative care and lack of support by the health care and other governing systems. Based on field notes from the initial interviews, an oral presentation “Interviewing the breathless COPD participants” was made at the IPCRG conference in Bucharest, Romania in May 2019. Patient and professionals interviews are now complete, with analysis still ongoing. Established a patient advisory group to provide feedback and input into research studies. Symposium for healthcare providers on the importance of end of life care at University of Malaya. Project data Download the project Data Management Plan View project metadata on the Health Data Research Innovation Gateway This article was published on 2024-09-24
