Quality of Life Trends in People With and Without Cancer Referred to Volunteer-Provided Palliative Care Services (ELSA): A Longitudinal Study.

CONTEXT: Trends in symptoms and functional ability are known toward the end of life, but less is understood about quality of life, particularly prospectively following service referral.

OBJECTIVES: This study compares quality of life trajectories of people with and without cancer, referred to volunteer-provided palliative care services.

METHODS: A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer) was performed. Quality of life data (WHOQOL-BREF) were collected at baseline (referral), four weeks, eight weeks, and 12 weeks. Sociodemographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study.

RESULTS: People with cancer had a significantly better quality of life at referral to the volunteer-provided palliative care services than those with nonmalignant disease despite similar demographic characteristics (Cohen d's = 0.37 to 0.45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with nonmalignant disease.

CONCLUSION: Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer-provided palliative care services.