Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study

Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study

Jones T A; Olds T S; Currow D C; Williams M T

Palliative Medicine

2019

adult; article; child; cohort analysis; female; human; male; palliative therapy; controlled study; clinical article; palliative care; quality of life; caregiver; feasibility study; outpatient; accelerometry; acceptability; Australia; burden; cohort study; European Quality of Life 5 Dimensions Questionnaire; Feasibility; Karnofsky Performance Status; multimedia; numeric rating scale; pilot study; recall; time-use

Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim(s): To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design(s): An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (7 Numerical Rating Scale 0-10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Result(s): A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion(s): A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness. Copyright © The Author(s) 2019.

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