Association between quality of life of terminally ill patients and caregiver burden in a Saudi palliative home-care service: a cross-sectional exploratory study.

This study was approved by the Institutional Review Board (IRB) at King Faisal Specialist Hospital and Research Center/Jeddah, Saudi Arabia, given number: IRB 2021-80.BackgroundIn palliative care, patient-reported quality of life (QoL) and caregiver burden are related but conceptually distinct outcomes. Patient QoL reflects the lived experience of advanced illness, whereas caregiver burden reflects the practical, emotional, and social demands of providing care. Although both outcomes have been examined separately, dyadic evidence from Saudi palliative care settings remains limited. This study therefore explored the association between terminally ill patients' QoL and caregiver burden in a home-based palliative care service.MethodsWe conducted a single-center cross-sectional exploratory study at King Faisal Specialist Hospital and Research Centre, Jeddah, Saudi Arabia. Terminally ill adult patients with cancer who were enrolled in palliative home-care services and their adult caregivers were recruited between July and November 2023. Data were collected through interviewer-administered questionnaires. Caregiver burden was measured using the Zarit Burden Interview (ZBI), and patient QoL was measured using the EORTC QLQ-C15-PAL. Arabic-language versions of the questionnaires were used, drawing on published psychometric work for Arabic-speaking populations [1, 2]. Because the, conveniently recruited, sample included only 30 patient-caregiver dyads, analyses were limited to descriptive statistics and exploratory univariable comparisons. Normality was assessed using the Shapiro-Wilk test; categorical comparisons were explored using chi-square tests, and non-normally distributed continuous outcomes were compared across caregiver-burden categories using the Kruskal-Wallis test.ResultsThirty patient-caregiver dyads were included. Patients had a mean age of 67.3 years (SD 13.7), and 53.3% were female. Caregivers had a mean age of 41.9 years (SD 9.4), and 63.3% were female. The overall QoL score was 44.4 (SD 24.5; 95% CI 35.3-53.5), with higher scores indicating worse QoL. The highest symptom burdens were observed for constipation and dyspnea. Twenty-four caregivers (80.0%) reported at least moderate burden, including 16 (53.3%; 95% CI 36.1-69.8) with moderate-to-severe burden and 8 (26.7%; 95% CI 14.2-44.4) with severe burden. There was borderline statistical evidence of a difference in overall patient QoL across caregiver-burden categories (p = 0.048), with worse patient QoL scores observed in dyads where caregivers reported severe burden. No significant associations were identified between caregiver burden and individual QoL subscales or the examined demographic characteristics.ConclusionsIn this small exploratory sample, both poor patient QoL and substantial caregiver burden were common. The observed relationship between worse overall patient QoL and higher caregiver burden should be interpreted cautiously because of the small sample size, borderline p-value, cross-sectional design, and lack of adjustment for confounding. These findings are best viewed as hypothesis-generating and support the need for larger, multicenter studies of patient-caregiver dyads in Saudi palliative care.