Evaluation of a Group-based Patient Education Program Promoting Self-management in Adults with Hirschsprung Disease and Anorectal Malformations.

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.

Biofeedback vs. electrostimulation in the treatment of postdelivery anal incontinence: a randomized, clinical trial.

PURPOSE: This study was designed to evaluate the effect of biofeedback and electrostimulation in a randomized, clinical trial for the treatment of patients with postdelivery anal incontinence. METHODS: Forty-nine females who sustained third-degree or fourth-degree perineal rupture with a mean age of 36 (range, 22-44) years were included in the study. The females were randomized to biofeedback or electrostimulation treatment. Forty females completed the study: 19 in the biofeedback and 21 in the electrostimulation group. Biofeedback or electrostimulation sessions were performed two times daily for eight weeks in each group. Wexner incontinence score, fecal incontinence quality of life scores, and reduced quality of life on visual analog scale were registered before and after treatment. Patients' self-rating of treatment effect also was registered in both groups. The primary outcome measure was the Wexner incontinence score. RESULTS: There were no differences in treatment effect between groups. Comparing pretreatment status to posttreatment in each group showed no improvement in Wexner score, reduced quality of life, or any of the fecal incontinence quality of life scores. Patients' self-rating of the treatment effect, however, showed a subjective improvement of symptoms both in the biofeedback and in the electrostimulation group (median, 7 vs. 5.) CONCLUSIONS: This study shows that there was no difference in effect between biofeedback and electrostimulation. Neither biofeedback nor electrostimulation treatments improved Wexner incontinence score, reduced quality of life, or fecal incontinence quality of life scores. Both treatments resulted in improvement of patients' subjective perception of incontinence control.