Background No core set of outcomes to evaluate patient education (PE) programmes exists. Evaluation of existing outcome measures is recommended1. A Norwegian expert panel comprising patients and health professionals experienced in patient education (PE) participated in a 3-round Delphi-process. The aim of the process was to obtain consensus about outcome domains that might be influenced by PE for people with inflammatory arthritis (IA). Six domains were identified: Understanding disease and treatment, knowledge about healthy life style, coping strategies, self-efficacy, empowerment and communication with health professionals. Through a systematic literature search and further Delphi-rounds, the expert panel identified four patient-reported outcome measures (PROMs) that might capture these outcome domains.
Objectives To test the feasibility of four identified PROMs suitable to evaluate patient education programmes.
Methods Arthritis Self-Efficacy Scales (ASES) for pain and symptoms, Effective Consumer Scale (EC-17), Health Education Questionnaire (heiQ) and Patient Activation Measure (PAM) were tested in 13 PE programmes for people with IA at six rheumatology departments in Norway. The PROMs were divided into two test-sets, set A (ASES, EC-17 and PAM) and set B (ASES and heiQ). Data were collected before, immediately after and 3 months after PE programmes. The instruments were tested for missing values, internal consistency (Cronbach's α) and ability to detect change. Floor and ceiling effects were considered to be present if more than 15% of the patients achieved the lowest or highest possible score on each item.
Results 104 patients answered the questionnaires before participation in a PE programme, 63 in group A and 41 in group B, respectively. 96 (92%) answered the questionnaires after intervention and 78 (75%) responded at 3-month follow-up. Missing values were few in all PROMs (range 0–1.7%). Cronbach's α was acceptable in ASES pain (0.75) and ASES symptoms (0.81), EC-17 (0.91) and PAM (0.78). HeiQ comprises eight separate subcategories; seven categories had acceptable Cronbach's α (0.72–0.86). All PROMs showed statistically significant improvements after the PE programmes. At 3-month follow-up statistically significant changes were found only in EC-17 (p=0.01, SRM 0.4) and three heiQ subcategories; emotional distress (p=0.01, SRM 0.5), skill and technique acquisition (p=0.02, SRM 0.5) and health service navigation (p=0.02, SRM 0.5). There were ceiling effects in all PROMs at baseline, 10/13 items in PAM, 5/17 in EC-17, 3/11 in ASES and 14/40 in heiQ. No floor effects were detected in any of the PROMs.
Conclusions Based on this pilot study in patients with IA, EC-17 and three of the heiQ subcategories were the most feasible PROMs in terms of internal consistency and ability to detect change. Although ASES did not exhibit significant changes at 3-month follow-up, it should be considered as an outcome measure, because it is the only instrument to measure self-efficacy.
Zangi, H.A. et.al. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis 2015;74:954–962.
Disclosure of Interest None declared