Stakeholder consensus of quality indicators for end-of-life cancer care in Malaysia: a modified Delphi study

BACKGROUND: End-of-life care is an essential component of cancer care. Good end-of-life care improves quality of life for the dying individuals and their loved ones. This study aimed to compile a list of quality indicators (QIs) endorsed by experts, for assessing the quality of end-of-life care for cancer patients in Malaysia.

METHODS: Eligible QIs were first identified through a scoping review, which formed the basis for a five-round online modified Delphi survey that was undertaken to reach expert panel agreement. Firstly, the relevance of each QI was rated by a panel comprising healthcare professionals (HCPs) in oncology and palliative care, caregivers, and patient advocates using a 9-point Likert scale. Secondly, the feasibility of extracting these indicators from medical charts was evaluated using the same rating scale; this was assessed only by HCPs due to their familiarity with the documentation practices. QIs with a median score ≥ 7 and with ≥ 75% of rating ≥ 7 were considered endorsed.

RESULTS: Of the 47 experts invited, 39 participated (response rate 83.0%): 31 HCPs, five caregivers and three patient advocates. From an initial list of 64 indicators, 31 were endorsed across 10 domains, including measures related to: symptom management such as pain, dyspnoea, and other physical symptoms (e.g., assessment of delirium and agitation) (n = 11/64); psychological and social aspects of care (e.g., depression assessment) (n = 2/64), treatment modalities (e.g., antiemetics for chemotherapy) (n = 1/64); hospital and community palliative care services (e.g., home care visits) (n = 5/64); advanced care planning (e.g., resuscitation preference) (n = 2/64); continuity and coordination of care (e.g., multidisciplinary team consultation) (n = 5/64); place of death and care (e.g., preferred place of death) (n = 4/64); and medications for respiratory secretion (n = 1/64). Some unendorsed indicators included those from the domains of hospitalisation (e.g., intensive care unit admission) (n = 3/64) and spiritual care (e.g., spiritual needs assessment) (n = 2/64).

CONCLUSIONS: A comprehensive set of 31 indicators was identified. These QIs can be used for evaluating the quality of end-of-life care received by cancer patients and serve as a foundation for future quality improvement initiatives. Further studies are needed to validate these QIs in real-world clinical practice and assess the feasibility and reliability of extracting these indicators from medical charts.