ABSTRACT
INTRODUCTION: Adults with Hirschsprung disease (HD) and anorectal malformations (ARM) may experience persisting and new somatic and psychosocial problems. Patient education programs (PEPs) may improve self-management in patients with chronic illnesses. The aim of this study was to explore HD and ARM adults' experiences with and evaluation of a group-based PEP. We also looked at factors that might influence the attendance rate. METHOD: Non-intellectually impaired HD and ARM adults were invited to attend a diagnosis specific PEP at a pelvic floor interdisciplinary center. Eight health care professionals lectured. Aspects of the PEP were graded anonymously in a patient reported experience measure (PREM). Ethical approval was obtained. RESULTS: 17% (21/125) of invited adults (10HD, 11ARM) attended four PEPs. 19/21 (90%) PREMs were returned. Participants found meeting peers and sharing experiences especially valuable in addition to improved disease knowledge. Lectures by the pediatric and colorectal surgeons, stoma nurse, and sexologist were rated highest by the participants. The majority reported that the PEP would be helpful in managing everyday life. All participants recommended PEP in adolescence. Factors such as gender and travel distance did not affect attendance rate, but participants were older than non-participants, median 37 versus 24 years (p = 0.01). CONCLUSION: Attendance rates were low among HD and ARM adults invited to a PEP, but participants were overall highly satisfied. Peer support, mutual learning, and increased disease knowledge were seen as invaluable assets of the PEP. A web-based PEP was discouraged, while physical PEPs for both adults and adolescents were encouraged. LEVEL OF EVIDENCE: III.
