Detection of educational needs of patients with inflammatory arthritis: feasibility and results in routine care

Abstract

Background: Therapeutic Patient education (TPE) is part of the disease management of inflammatory rheumatic diseases. The detection of unmet educational needs by the rheumatologist may increase the patients’ motivation for education. Objectives: (1) Assess the feasibility of a systematic procedure to detect patients educational needs in current practice. (2) Determine the type of patients’ needs. Methods: In a pragmatic prospective pilot study, the rheumatologist invited outpatients with rheumatoid arthritis (RA) or spondyloarthritis (SpA) to complete a questionnaire of educational diagnosis. The questionnaire was elaborated according to the French National Health Authority guidelines. Six domains were assessed: knowledge and beliefs about disease and treatments, impact on family and social life, impact on professional life, emotional well-being and management by the health care system. For each domain, patients were asked whether they encountered difficulties or needed more information or help. Results: The questionnaire was proposed by the rheumatologist to 68 patients of the 120 outpatients during a 4 month period in hospital or private practice. 53/68 (78%) questionnaires were completed. The reasons of non-distribution were: lack of time (27), severe medical condition (20), oversight (11), literacy or cognitive barriers (6), recent contact with a TPE program (6), other reasons (10). Some patients experiencing language or cultural barriers were subsequently helped by a hospital pharmacist to fulfill the questionnaire. Seventy-four questionnaires were finally analyzed (55 RA and 19 SpA patients, mean age 57 years (24-87)) l’sixty-four percent patients expressed at least one educational need. Patients experienced difficulties or needed information or help in relation to the disease (14% experienced difficulties/55% needed information or help), treatment (respectively 10%/39%), social and family life (33%/35%), professional life (53%/44%), health care system (11%/34%), emotional status (38%/49%).There was no statistical difference between the expression of at least one educational need and age, type of arthritis, duration of disease, hospital or private care, biologic treatment. 61% patients wished to meet another health professional or other patients. The questionnaire was considered helpful by 77% patients. Only 3 patients found the questionnaire too long and none thought it was intrusive. Conclusions: Detection of patients’ educational needs in current practice is feasible using a self-administrated questionnaire with good acceptability. This procedure is a first step in an educational process. For some patients having language or cultural barriers, the help of another professional is essential. Educational needs are high in patients with arthritis. They are widely underestimated in routine care and include major socio-professional and psychological issues.