title: Participating in a cancer clinical trial? The balancing of options in the loneliness of autonomy: a grounded theory interview study.
abstract: Cancer patients asked to participate in a randomised trial including chemotherapy at two university centres and a satellite centre were interviewed about perceptions and experiences (14 trial participating and 15 trial declining patients). The central phenomenon was a constant, cautious balancing of personal options searching for maximised effect, personal safety, trust, confidence and being cared for. Almost all developed a treatment preference and this was decisive for choices. Trial participants strongly wished to get the experimental treatment perceived as superior. They felt their freedom of choice being limited by randomisation. In contrast, trial decliners almost all focused on graver adverse effects related to the experimental treatment. A trusting and confident doctor-patient relationship was valued strongly. Yet, most breast cancer patients treated at the two large centres experienced a general lack of personal trust, confidence and being taken care of. The major reason was patients meeting too many physicians perceived as incompetent and unprepared. In contrast, the ovarian cancer patients treated at the satellite centre were content and satisfied with the main reason being the low number of physicians who were perceived as prepared, empathetic and knowledgeable. All patients expressed a feeling of "loneliness of autonomy" lacking sufficient knowledge and other resources to make educated choices.
authors: Department of Medical Gastroenterology C, Copenhagen University Hospital in Herlev, Herlev Ringvej 75, DK-2730 Herlev, Denmark. smadsen@dadlnet.dk
authors: S M
authors: SM
authors: Madsen
authors: S
authors: S
authors: Holm
authors: P
authors: P
authors: Riis
mesh_terms: D001943:Breast Neoplasms / Q000628:therapy; D003657:Decision Making; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D010051:Ovarian Neoplasms / Q000628:therapy; D010361:Patients / Q000523:psychology*; D026684:Personal Autonomy; D010817:Physician-Patient Relations; D016032:Randomized Controlled Trials as Topic