Halleran Devin R, Lane Victoria A, Leonhart Karen L, Fischer Beth, Sebastião Yuri V, Chisolm Deena J, Levitt Marc A, Wood Richard J, Minneci Peter C, Deans Katherine J
Center for Surgical Outcomes Research, Center for Innovation in Pediatric Practice, The Research Institute and Department of Pediatric Surgery, Nationwide Children's Hospital.
Center for Colorectal and Pelvic Reconstruction, Department of Surgery, Nationwide Children's Hospital, Columbus, OH.
J Pediatr Gastroenterol Nutr. 2019 Aug;69(2):e34-e38. doi: 10.1097/MPG.0000000000002348.
The aim of this review is develop a reliable and valid questionnaire that assesses patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) of caregivers, families, and patients with severe constipation and fecal incontinence who failed conservative treatments and require a formal bowel management program (BMP).
A 5-step iterative process was utilized to ensure the reliability and validity of the final instrument. Parents or guardians of patients undergoing our week-long BMP were first asked 20 open-ended questions aimed at understanding the challenges in managing their child's condition. Responses were transformed into an initial 41-item survey constituted of 2 constructs relating to PREMs (24 items) and PROMs (17 items). Survey items were then administered to 359 parents and guardians undergoing BMP. Cognitive interviews were performed with 20 families to assess face validity and to further refine the survey. Instrument readability and reliability was assessed by Flesch-Kincaid and Crohnbach α analyses. Items that weakly correlated were deleted to yield a final instrument that was both valid and reliable.
A 33-statement survey was developed that encompasses important physical and emotional health concerns, quality of life, treatment success, financial considerations, schooling, parental employment, and social concerns. The final instrument, the Patient-Reported Experience and Outcome Measure in a Bowel Management Program (PREOM-BMP), is divided into 2 separate constructs that assess important patient-reported experience (22 items) and outcome (11 items) measures. Reliability analyses on the final instrument yielded a Crohnbach α of 0.925.
The PREOM-BMP offers physicians and nursing professionals a brief and valid tool to measure the impact of a bowel management program on both the child and the family unit.
本综述的目的是开发一份可靠且有效的问卷，用于评估严重便秘和大便失禁患者、其照顾者及家属在保守治疗失败且需要正式肠道管理计划（BMP）时的患者报告体验指标（PREMs）和患者报告结局指标（PROMs）。
采用五步迭代过程以确保最终工具的可靠性和有效性。首先向接受为期一周BMP治疗的患者的父母或监护人提出20个开放式问题，旨在了解管理孩子病情的挑战。回答被转化为一份初始的41项调查问卷，由与PREMs（24项）和PROMs（17项）相关的两个结构组成。然后将调查问卷发放给359名接受BMP治疗的父母和监护人。对20个家庭进行了认知访谈，以评估表面效度并进一步完善调查问卷。通过弗莱施-金凯德分析和克朗巴赫α分析评估工具的可读性和可靠性。删除相关性较弱的项目，以产生一份既有效又可靠的最终工具。
制定了一份包含33条陈述的调查问卷，涵盖了重要的身心健康问题、生活质量、治疗成功情况、经济考量、学业、父母就业及社会问题。最终工具，即肠道管理计划中的患者报告体验与结局指标（PREOM-BMP），分为两个独立的结构，用于评估重要的患者报告体验（22项）和结局（11项）指标。对最终工具的可靠性分析得出克朗巴赫α系数为0.925。
PREOM-BMP为医生和护理专业人员提供了一个简短且有效的工具，用于衡量肠道管理计划对儿童及其家庭单位的影响。
