Time to practice what we preach? Appreciating the autonomy of cancer patients on deciding whether they want to be informed about interventional studies for fatigue

• Published in: Palliative medicine 2016-10, Vol.30 (9), p.897-898
• Main Authors: Poort, Hanneke, Peters, Marlies EWJ, Verhagen, Stans AHHVM, Verhoeven, Jopie, van der Graaf , Winette TA, Knoop, Hans
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Attitude to Health; Cancer; Cancer therapies; Fatigue; Fatigue - etiology; Fatigue - therapy; Female; Humans; Informed Consent - psychology; Intervention; Male; Middle Aged; Neoplasms - complications; Palliative Care - psychology; Patients; Patients - psychology; Personal Autonomy; Studies
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1177/0269216316648070

Fatigue is a prevalent and burdensome symptom for patients with advanced cancer. The long-term use of pharmacological interventions for fatigue is not supported by evidence, although non pharmacological and behavioral interventions are promising approaches to reducing fatigue based on their effectiveness in early-stage cancer patients. Behavioral factors, like sleeping problems and being less physically active, can also contribute to fatigue in advanced cancer patients. Interventional studies for the management of fatigue in advanced cancer patients are needed. However, it is a notorious challenge to identify patients for interventional studies aimed at fatigue or symptom control while patients are undergoing cancer treatment with palliative intent. One of the barriers to successful identification of these patients is professional gatekeeping, due to the care professionals' perception that study participation might be too burdensome for the patient. Although gatekeeping is done in order to prevent additional burden for patients who are seriously ill, it also limits access for patients to potentially effective interventions for fatigue and makes it difficult to develop evidence-based interventions for fatigue in advanced cancer patients. More importantly, gatekeeping assumes that patients are either not capable to decide for themselves whether they want to be informed about an intervention study or do not want to be informed. We aimed to investigate to what extent patients receiving cancer treatment with curative or palliative intent would be willing to be contacted by a researcher about possible interventional studies aimed at fatigue once they were screened for the presence of fatigue in routine clinical practice. An ongoing interventional study addressing fatigue in patients receiving treatment with palliative intent for breast or colon cancer was available at the time of this quality project (TIRED study, Netherlands Trial Registry, NTR3812).