Purpose To investigate cancer patients’ knowledge and attitudes regarding fatigue and the potential benefits and acceptability of a brief information booklet. Methods The CARPE DIEM study assessed knowledge and attitudes regarding fatigue in a diverse group of 50 cancer patients before (T0) and about one (T1) and four months (T2) after reading the booklet. At T1, participants additionally rated its usefulness. Results At baseline, 37.5% of respondents did not know the term “fatigue” or what it meant. Those who already knew something about fatigue mainly had obtained their information from booklets, books, or articles (63.3%) and/or the internet (46.7%). Overall, knowledge gaps existed, particularly about potential fatigue treatment options and whether fatigue is an indicator of cancer progression. Furthermore, 56.4% felt poorly informed, and 46.1% reported feeling helpless in the face of fatigue. Lower knowledge at baseline was significantly associated with lower education and older age. At T1 and T2, there were significant improvements in several knowledge questions and attitudes. Patient-reported benefits included getting new information about fatigue (91.1%), awareness of not being alone with their problems (89.7%), taking appropriate actions (72.9%), and encouragement to talk about their fatigue with family/friends (55.3%) or with a health professional (52.7%). Conclusions Specific gaps were identified in the provision of information and education for cancer patients about fatigue. A low-cost intervention asking to read a brief information booklet was associated with improved knowledge. This could be considered as a first step offered as part of a bundle of further efforts to improve knowledge and care of fatigue.
Purpose To evaluate the patients’ perspective on feasibility of using a fatigue diary and its benefits on self-management. Methods This longitudinal study enrolled 50 cancer patients in routine care. Following baseline (t0) assessment, patients were asked to complete a 7-day fatigue diary and subsequently obtained written diary evaluation. Feasibility, benefits, and fatigue-related attitudes were assessed via self-report 1 (t1) and 4 months (t2) after distributing the diary. Data were analyzed descriptively and using Wilcoxon signed-rank tests. Results Most patients (94%) completed the diary for 7 days and rated feasibility as high. After diary completion and receiving the evaluation, fewer patients felt helpless in the face of fatigue (t1: 21% vs. t0: 53%). Additionally, more patients addressed fatigue with their general practitioner (t2: 49% vs. t0: 36%) and pro-actively searched for information and help (t2: 59% vs. t0: 38%). The diary enabled a majority of patients to be aware of their fatigue patterns, to plan daily routines accordingly and to take adequate actions against fatigue. Conclusion The study showed that symptom monitoring via a fatigue diary was considered feasible and enhanced self-management in cancer patients. Thus, fatigue diaries might be a useful measure contributing to an improved fatigue management. The results reinforce guideline recommendations for routine application of fatigue diaries in clinical care. Healthcare professionals should encourage patients to fatigue diary use and provide individually tailored counseling based on diary entries.
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