Improving patient involvement in chronic disease management: the views of patients, GPs and specialists on a guidebook for ulcerative colitis

Abstract

Patient information, shared care and decision-making are recognised as beneficial to chronic disease management. As part of an RCT, opinions of ulcerative colitis patients and their doctors were sought on a guidebook designed to support self-care and mediate doctor/patient interaction during consultations. Semi-structured interviews were conducted with 6 specialists and 16 GPs. Patients' views were obtained from written responses to a postal questionnaire (136 replies). Inclusion of lay knowledge and clarification of treatment decision processes increased patients' perception of involvement in disease management through increased identification and awareness of others' self-management experiences. Doctors focused on the importance of improving patients' compliance and use of services. However, the guidebook was seldom used as it had been intended during consultations. Patients felt constrained by time limits and consultants did not actively encourage guidebook use. Based on the findings, we suggest an approach utilising the guidebook to improve patient participation in disease management.