AIMS:
Receipt of palliative systemic therapies requires patients to make important judgements about the value of time spent on cancer treatment. We explored patient perceptions of time spent coordinating, commuting to, or receiving cancer treatments (1).
METHODS:
We conducted semi-structured interviews with purposively selected adult patients with advanced gastrointestinal cancers receiving palliative chemotherapy at one regional and one metropolitan cancer centre. We explored the impact of time and logistic considerations on patients’ experience with healthcare; lives outside of care; and how these impacts were communicated by their oncologists. Interviews were analysed using reflexive thematic analysis using a framework approach.
RESULTS:
Twenty patients participated; 80% were Australian-born, 60% male, 50% regionally situated, 35% were 55-64 years old and 55% had colorectal cancer. Five themes emerged: (1) treatment as work; (2) opportunity-costs of receiving care; (3) time in treatment decision-making; (4) tools for managing treatment time; (5) treatment time as an investment. Participants conceptualised time related to treatment as analogous to work; many perceived they had little choice but to participate, and organised their lives around healthcare. Treatment as work was related to the number, scheduling and duration of appointments, relationships with providers, time spent commuting, waiting for, and coordinating care. Beyond direct time costs of care, side-effects imposed additional indirect time costs which impacted participation in employment, family, and leisure activities. Many participants felt underprepared for the time demands of treatment. Whilst welcoming more information about treatment time, few participants identified it as a major treatment decision-making factor. Few participants expressed regret about time spent in treatment, seeing it as a necessary investment in their health.
CONCLUSION: Treatment time impacts are perceived as a significant, but unavoidable component of receiving cancer care. Our study highlights the impact of direct and indirect treatment time costs on patients’ lives outside of care.