Division of Advanced General Pediatrics and Primary Care, Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Mary Ann & J. Milburn Smith Child Health Outcomes, Research, and Evaluation Center, Stanley Manne Children's Research Institute, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 East Chicago Avenue, Box 162, Chicago, IL, 60611, USA.
J Patient Rep Outcomes. 2023 Feb 3;7(1):10. doi: 10.1186/s41687-023-00549-z.
Self-efficacy is important for managing chronic conditions; however, its measurement in pediatric healthcare settings remains rare. The goal of this project was to adapt an existing disease-agnostic adult self-efficacy patient reported outcome (PRO) measure to enhance suitability of items for measuring the self-efficacy of parents that manage their children's health conditions.
We adapted the existing Patient-Reported Outcomes Measurement Information System® (PROMIS®) adult self-efficacy healthcare measure to parental voice. First, a targeted literature review informed rephrasing of the adult items and identification of new pediatric-specific content. The initial item pool was revised based on input from 12 multidisciplinary experts. Next cognitive interviews of adapted items were simultaneously conducted with English and Spanish-speaking parents of pediatric patients with a range of chronic and/or disabling conditions recruited from a Midwestern children's hospital to finalize the measure.
Findings resulted in an initial item pool of 33 pediatric-specific items which were narrowed to 31 draft items based on expert input. Parent cognitive interview findings (N = 26) informed further item reduction resulting in a final measure consisting of 30 items representing nine domains. Fourteen items are relevant to children regardless of condition severity (e.g., health care information/decision making; symptom identification/management) and 16 items are relevant to children with specific health care needs (e.g., medication usage, equipment).
We conducted a first step in developing a condition-agnostic, PRO measure of parental self-efficacy managing their children's chronic and/or disabling conditions that is acceptable and understandable to English and Spanish-speaking parents.
自我效能感对于管理慢性疾病非常重要；然而，在儿科医疗保健环境中，对其进行测量的情况仍然很少见。本项目的目标是改编现有的、与疾病无关的成人自我效能感患者报告结局（PRO）测量工具，以增强其用于测量管理儿童健康状况的父母自我效能感的适用性。
我们将现有的患者报告结局测量信息系统®（PROMIS®）成人自我效能感医疗保健测量工具改编为适合父母使用的工具。首先，有针对性的文献回顾为重新表述成人项目和确定新的儿科特定内容提供了信息。根据来自 12 名多学科专家的意见，对初始项目池进行了修订。然后，根据从中西部一家儿童医院招募的患有各种慢性和/或残疾疾病的儿科患者的英语和西班牙语家长的意见，对改编后的项目进行了同步认知访谈，以最终确定该测量工具。
研究结果产生了一个由 33 个儿科特定项目组成的初始项目池，根据专家的意见，这些项目被缩小到 31 个草案项目。家长认知访谈结果（N=26）进一步指导了项目的删减，最终确定了一个由 30 个项目组成的测量工具，代表了九个领域。其中 14 个项目与儿童的健康状况无关（例如，医疗信息/决策制定；症状识别/管理），16 个项目与具有特定医疗需求的儿童有关（例如，用药、设备使用）。
我们在开发一种与疾病无关的、用于测量父母管理其子女慢性和/或残疾状况的自我效能感的 PRO 测量工具方面迈出了第一步，该工具对英语和西班牙语家长来说是可接受和可理解的。
