Purpose:

There is a need for a comprehensive summary of qualitative research on the health-related quality of life (HRQoL) of people with advanced cancer requiring palliative care. We aim to systematically review qualitative studies on outcomes, needs, experiences, preferences, concerns and HRQoL of people in Europe with advanced cancer requiring palliative care over the last decade.

Methods:

Protocol registered (www.crd.york.ac.uk/PROSPERO, CRD42024575065). The search was conducted in PubMed and Scopus, from 2013 onward. Inclusion criteria: qualitative studies addressing constructs related to the HRQoL of adults with cancer requiring palliative care in Europe. Abstracts and full texts were reviewed, data extracted, and risk of bias assessed independently by two researchers. A thematic analysis stratified by study objective was performed, grouping the emerging themes into categories (primary outcome).

Results:

Of 18,256 articles identified, 20 fulfilled the inclusion criteria: 10 studies with a generic objective (whole palliative process or end-of-life phase), and 10 with specific focuses. Five categories (35 themes) emerged from the studies with generic focuses: ‘Psychological Function’ (n = 15), ‘Clinical Management’ (n = 8), ‘Symptoms and Physical Function’ (n = 6), ‘Social Function’ (n = 5), and ‘End-of-life’ (n = 1). Themes from the 7 studies focusing on treatment, services, and self-management also fitted into these categories, adding ‘Spiritual Well-being’.

Conclusion:

These findings emphasise the predominance of the psychological function domain in cancer patients requiring palliative care, including cancer-related anxiety and distress, coping mechanisms, control and decision-making, and fearing and expecting death. Additionally, clinical management unmet needs were identified in health care, information and communication, and end-of-life settings (home vs. hospital).

Differences across Europe in access to palliative care can affect the symptoms suffered by patients with advanced cancer. Many questionnaires measuring quality of life among oncology patients in palliative care failed to address the whole range of their concerns. Through a systematic review of the literature, we identified 20 studies where these patients express their needs, experiences, preferences, and the impact on their quality of life. Beyond the traditional physical dimension, our results highlight the predominance of the psychological and spiritual dimensions among people in Europe with advanced cancer requiring palliative care over the last decade. Also, these patients often comment the importance of clinical management, which usually is not included in quality of life instruments, to consider the way the healthcare professionals address and inform them of each step, and to support shared decision-making, including where to spend their end-of-life stage: at home or in a hospital. New questionnaires to measure correctly the many dimensions identified by patients with advanced cancer will allow the healthcare systems in European countries improve their understanding and allow for policy changes to better support them at this last stage of their lives.