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Overcoming fatigue – Evaluation of a program to foster patient competence

Principal Investigator

Dr. Martina Schmidt

Study Objectives

The project aims to help identify symptoms of fatigue correctly and to show ways in which fatigue can be counteracted. Within the scope of this study, a short information brochure and a symptom diary will be evaluated and optimized.

Abstract

Having survived the cancer - but still not fully back in life: Many cancer patients feel extremely tired and exhausted and a paralyzing lack of strength turns everyday activities into a torture. This syndrome, known as fatigue, often occurs during cancer therapy and sometimes persists for months or even years after end of therapy.

Nevertheless, fatigue is not often subject of discussion. This observation that has not only been described in the literature, but is also in line with our experience that many patients have never even heard of fatigue. The lack of information leads to fatal misjudgements, for instance, that fatigue is a symptom of cancer progression, and to resignation of those affected ("You have to come to terms with exhaustion after cancer, there's nothing you can do about it") or to a lack of understanding of the social environment ("Get over yourself, your cancer treatment is over now.").

With this in mind, our Carpe Diem program is designed to improve patient competence in fatigue. This is the fundamental first step in enabling patients to properly classify their symptoms and manage fears, and to seek further advice and help (NCCN guidelines, 2015).

A total of 40-45 patients with various tumors will be recruited during their therapy. They will receive an information brochure on symptoms of exhaustion which they are asked to read at home in their own time. In addition, the patients will receive a diary in which certain symptoms and factors (e.g. amount of sleep) will be queried for 7 days. Once completed and submitted, the patients receive an individual evaluation of their symptom diary, which can support the treatment of symptoms. State of knowledge as well as self-efficacy regarding fatigue management before and after completion of both modules as well as patient acceptance and adherence will be recorded and examined.

Current status and results

Between October 2019 and December 2020 50 patients were recruited for study participation. Data analysis was completed in summer 2022.

The Carpe Diem Study revealed significant gaps in education and information for cancer-related fatigue. More than one third of the participants had never heard of 'cancer-related fatigue' before. Moreover, 56% of the patients were poorly informed about fatigue and felt helpless in the face of fatigue. The study results demonstrated benefits of fatigue information booklets for patients affected by cancer-related fatigue: LINK
The fatigue information booklet was updated and released in October 2022. It can be downloaded from the following link LINK

Additionally, we showed that completing a fatigue diary is feasible to cancer patients and has positive effects on self-management: LINK

Contact

Dr. Martina Schmidt
phone: +49 6221 42 2220
e-mail: m.schmidt@dkfz.de

Publication

Schmidt ME, Milzer M, Weiß C, Reinke P, Grapp M, Steindorf K: Cancer related fatigue: benefits of information booklets to improve patients' knowledge and empowerment. Supportive Care in Cancer; 2022 Feb 11; doi: 10.1007/s00520-022-06833-w

Milzer M, Steindorf K, Reinke P, Schmidt ME: The cancer patients' perspective on feasibility of using a fatigue diary and the benefits on self-management: results from a longitudinal study. Supportive Care in Cancer; 2022 Oct 13; doi: 10.1007/s00520-022-07397-5

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