Why do patients decline to take part in a research project involving pulmonary rehabilitation?

• Published in: Respiratory medicine 2007-09, Vol.101 (9), p.1942-1946
• Main Authors: Taylor, Renay, Dawson, Simonne, Roberts, Nicola, Sridhar, Mangalam, Partridge, Martyn R
• Format: Article
• Language: English
• Subjects: Aged; Biological and medical sciences; Biomedical Research; Chronic obstructive pulmonary disease, asthma; COPD; Decline; Ethics; Female; Follow-Up Studies; Forced Expiratory Volume; Health Knowledge, Attitudes, Practice; Health Services Accessibility; Hospitals; Humans; Interviews; Length of Stay; Male; Medical sciences; Miscellaneous; Noncitizens; Obesity; Patient Compliance; Patient Selection; Perceptions; Pneumology; Pulmonary Disease, Chronic Obstructive - physiopathology; Pulmonary Disease, Chronic Obstructive - psychology; Pulmonary Disease, Chronic Obstructive - rehabilitation; Pulmonary rehabilitation; Pulmonary/Respiratory; Radiotherapy. Instrumental treatment. Physiotherapy. Reeducation. Rehabilitation, orthophony, crenotherapy. Diet therapy and various other treatments (general aspects); Rehabilitation; Studies; Transportation of Patients; Trial participation
• ISSN: 0954-6111; 1532-3064
• DOI: 10.1016/j.rmed.2007.04.012

Summary Background It is important that those taking part in research trials are as representative as possible of those with the disease being studied. In a study of those with chronic obstructive pulmonary disease involving pulmonary rehabilitation, 120 of 297 suitable patients responded that they did not wish to take part in the trial. We were keen to know why these patients declined to take part in the study. Methods A total of 120 patients who had responded that they did not wish to take part in the main trial were approached to ask if they would be willing to undertake a semi-structured face-to-face interview in their own home or by telephone. Those who were willing ( n =39) underwent tape-recorded interviews and data analysis was performed using the framework method. Results This was a qualitative study which revealed that several themes influenced patients’ willingness or otherwise to take part in a research project involving pulmonary rehabilitation. Travelling to the hospital and location of the rehabilitation, along with competing commitments, and a variable perception of the benefits to the patient were clearly major factors and some had previous negative experiences of either the hospital, healthcare or research. While there was an element of negativity or impaired understanding regarding the research itself, the other factors appeared to be of greater importance. Conclusion Recruitment to pulmonary rehabilitation courses or recruitment to research involving pulmonary rehabilitation may be more successful if the location of the rehabilitation can be made as near to the patient's home as possible, and if the patient is given as much information as possible about what is involved.