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

Abstract

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