基于小组的患者教育计划对促进先天性巨结肠和肛门直肠畸形成年患者自我管理的评价。
Evaluation of a Group-based Patient Education Program Promoting Self-management in Adults with Hirschsprung Disease and Anorectal Malformations.
机构信息
Department of Pediatric Surgery, Oslo University Hospital, Oslo, Norway; University of Oslo, Institute of Clinical Medicine, Oslo, Norway.
The Pelvic Floor Center, Division of Surgery, Akershus University Hospital, Oslo, Norway.
出版信息
J Pediatr Surg. 2023 Dec;58(12):2332-2336. doi: 10.1016/j.jpedsurg.2023.06.015. Epub 2023 Jun 27.
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.
介绍
患有先天性巨结肠症（HD）和肛门直肠畸形（ARM）的成年人可能会持续存在新的躯体和心理社会问题。患者教育计划（PEP）可能会改善慢性病患者的自我管理能力。本研究旨在探讨基于小组的 PEP 对 HD 和 ARM 成年患者的体验和评估。我们还研究了可能影响出勤率的因素。
方法
非智力障碍的 HD 和 ARM 成年人被邀请参加在盆底跨学科中心举办的特定于疾病的 PEP。有 8 名医疗保健专业人员授课。PEP 的各个方面在患者报告的体验量表（PREM）中进行匿名评分。获得了伦理批准。
结果
在受邀的成年人（10 例 HD，11 例 ARM）中，有 17%（21/125）参加了 4 次 PEP。21/19 （90%）PREM 被返回。参与者发现与同龄人见面并分享经验除了提高疾病知识外，还特别有价值。参与者对儿科和结直肠外科医生、造口护士和性治疗师的讲座评价最高。大多数参与者报告说，PEP 将有助于管理日常生活。所有参与者都建议在青春期进行 PEP。性别和旅行距离等因素并不影响出勤率，但参与者的年龄大于非参与者，中位数为 37 岁与 24 岁（p=0.01）。
结论
受邀参加 PEP 的 HD 和 ARM 成年人的出勤率较低，但参与者总体上非常满意。同伴支持、相互学习和增加疾病知识被视为 PEP 的宝贵资产。不鼓励基于网络的 PEP，而鼓励为成年人和青少年提供实体 PEP。
证据水平
III。
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