What Aspects of Quality of Life are Important from Palliative Care Patients’ Perspectives? A Framework Analysis to Inform Preference-Based Measures for Palliative and End-of-Life Settings

Background and Objective Preference-based outcome measures are commonly applied in economic analyses to inform healthcare resource allocation decisions. Few preference-based outcome measures have been specifically developed for palliative and end-of-life settings. This study aimed to identify which quality-of-life domains are most important to Australians receiving specialised palliative care services to help determine if the development of a new condition-specific preference-based outcome measure is warranted. Methods In-depth face-to-face interviews were conducted with 18 participants recruited from palliative care services in South Australia. Data were analysed using a framework analysis drawing on findings from a systematic review of international qualitative studies investigating the quality-of-life preferences of patients receiving palliation (domains identified included cognitive, emotional, healthcare, personal autonomy, physical, preparatory, social, spiritual). Participants identified missing or irrelevant domains in the EQ-5D and QLU-C10D questionnaires and ranked the importance of domains. Results A priori domains were refined into cognitive, environmental, financial, independence, physical, psychological, social and spiritual. The confirmation of the eight important quality-of-life domains across multiple international studies suggests there is a relatively high degree of convergence on the perspectives of patients in different countries. Four domains derived from the interviews are not covered by the EQ-5D and QLU-C10D (cognitive, environmental, financial, spiritual), including one of the most important (spiritual). Conclusions Existing, popular, preference-based outcome measures such as the EQ-5D do not incorporate the most important, patient-valued, quality-of-life domains in the palliative and end-of-life settings. Development of a new, more relevant and comprehensive preference-based outcome measure could improve the allocation of resources to patient-valued services and have wide applicability internationally.