Outcomes in patient education programmes for people with rheumatic diseases: Results from a Delphi process and a study of feasibility and responsiveness.

Abstract

Patient education (PE) is recommended as an integral part of disease management for people with chronic inflammatory arthritis (IA). There is no consensus on how PE should be evaluated and which outcome measures should be used. This study had three aims: (a) to identify core aspects that PE for patients with IA may impact on; (b) to identify outcome measures to assess changes in these aspects; (c) to test the feasibility and responsiveness of the identified outcome measures. A Delphi process was conducted to identify core aspects and outcome measures. Feasibility and responsiveness were tested in a pre-/post-test study with 3 months follow-up, including 104 patients attending PE programmes. Seven core aspects were identified: communication with health professionals, coping strategies, empowerment, knowledge about healthy life style, self-efficacy, understanding disease and treatment, and sharing experiences. Four outcome measures were identified; Arthritis Self Efficacy Scale (ASES-11), Effective Consumer scale (EC-17), Health Education Impact Questionnaire (heiQ) and Patient Activation Measure (PAM). At baseline, all measures had low rates of missing data. All measures except two heiQ subscales exhibited ceiling effects. Internal consistency was acceptable. At follow-up, statistically significant, but small improvements were found in EC-17 and three heiQ subscales. ASES and EC-17 were found to be the most valid and feasible outcome measures to evaluate the identified core aspects of PE and can be recommended as outcome measures to assess PE programmes for patients with IA.