title: Patients' decisions about continuing with therapy in chronic illness: a study of hyperbaric oxygen therapy in multiple sclerosis.
abstract: The criteria which may be employed by chronically ill people in their decision about whether to continue with therapy were investigated in the context of a clinical trial of hyperbaric oxygen therapy for multiple sclerosis. An open-ended question about reasons for continuing or discontinuing treatment obtained data from 48 trial participants on completion of the trial and six months later. Physical factors were the most commonly cited reasons for continuing treatment; stabilization of the condition was mentioned as well as improvement. Lack of effectiveness was more commonly given as a reason to stop therapy six months after the trial. Social and practical reasons were also cited as reasons for discontinuing therapy and there was implicit evidence of a high level of social support enabling patients to continue therapy. Most problems appeared to have surfaced by the end of the trial. Epistemological reasons provided rationales for the decisions taken and referred particularly to the time required to make an informed judgement about the effectiveness of treatment. Personal experience and knowledge of the effects of hyperbaric oxygen on others were more significant to the decision than anticipation of the trial's formal results. The participants in the trial were sophisticated and responsible decision-makers even though their judgements would not always have coincided with medical opinion.
authors.affiliation: Department of Human Sciences, University of West London, Uxbridge, Middlesex.
authors.forename: A
authors.initials: A
authors.lastname: Wynne
authors.forename: J
authors.initials: J
authors.lastname: Monks
mesh_terms: D001294:Attitude to Health; D002908:Chronic Disease; D002986:Clinical Trials as Topic; D003657:Decision Making; D004311:Double-Blind Method; D006801:Humans; D006931:Hyperbaric Oxygenation; D009103:Multiple Sclerosis / Q000523:psychology / Q000628:therapy*; D012944:Social Support