Fatigue or tiredness is reported as an unmet need among Australian cancer survivors. Change in practice is required to close the gap. Consumer involvement in service provision planning can better align care delivery with needs. This study gathered Australian consumers’ views related to the applicability of evidence-based guidelines for cancer-related fatigue (CRF).
A Delphi design with mixed methods was used. Consumers post primary treatment with experience of CRF participated in two iterative surveys. The surveys focused on consumer experiences with recommendations of a Canadian CRF guideline, and their feasibility and acceptability. Data types were analysed separately then merged.
Sixty-eight consumers from 8 states or territories completed one or both surveys. Participants were aged 36 to 79 years (mean 61.1), diagnosed predominantly with breast (60%) or prostate cancer (35%). Although 47% were satisfied with management they had received, 82% of participants endorsed a need for CRF guidelines tailored to the Australian context. The Canadian guideline screening recommendations had been experienced at least once by 49% of participants, while 11-35% recalled different assessment elements. Participants provided insights into fatigue related limitations that impact accessibility of the guideline recommendations, including travelling to and attending appointments when energy is limited. Some consumers commented on a lack of accessible services with appropriate expertise, particularly beyond metropolitan locations, and some noted unhelpful attitudes or advice from their health professionals. Consumers highlighted individual differences, opportunities to choose the methods, location and timing of assessments, and education in lay language tailored to different levels of fatigue.
Having fatigue can be a barrier to its management. The delivery of care using evidence-based guidelines must be designed to meet consumer needs. Funding models that support telemedicine should be explored to increase the accessibility of evidence-based management.