Development and Validation of a Health-Related Quality-of-Life Measure in Older Children and Adolescents with Early-Onset Scoliosis

Abstract

Background:The 24-question Early-Onset Scoliosis Questionnaire (EOSQ-24) is a proxy measure assessing health-related quality of life (HRQoL) among patients with early-onset scoliosis (EOS). There exists an increasing need to assess HRQoL through a child’s own perspective, particularly for older children and adolescents with EOS. The purpose of this study was to develop and validate a self-reported questionnaire, the Early-Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF), to assess HRQoL in older children and adolescents with EOS.Methods:A literature review, an expert focus group, and patient interviews were used to generate a preliminary survey of appropriate domains and question items. This survey was provided to English-speaking patients with EOS who were 8 to 18 years of age and capable of answering survey questions. Content validity was assessed for clarity and relevance of questions. Confirmatory factors analysis was performed to reduce the number of items and determine domains that fit items. Reliability was evaluated by measuring the internal consistency of items and test-retest reliability. Construct validity was evaluated by convergent, discriminant, and known-group validity.Results:The literature review, expert focus group, and patient interviews identified 59 questions in 14 domains. Psychometric analysis reduced these to 30 questions across 12 domains: General Health, Pain/Discomfort, Pulmonary Function, Transfer, Physical Function/Daily Living, Participation, Fatigue/Energy Level, Sleep, Appearance, Relationships, Emotion, and Satisfaction. The final questionnaire was found to have good content and construct validity and adequate reliability.Conclusions:The EOSQ-SELF is a valid and reliable instrument for measuring self-reported HRQoL among older children and adolescents with EOS (ages 8 to 18 years). This will serve as an important research outcome measure and enhance clinical care by providing a better understanding of HRQoL for these patients.Level of Evidence:Diagnostic Level II. See Instructions for Authors for a complete description of levels of evidence.

Do Caregivers and Patients With Early-Onset Scoliosis Share the Same Perspective on Health-Related Quality of Life? A Comparison of 24-item Early-Onset Scoliosis Questionnaire and 22-item Scoliosis Research Society Questionnaire Scores

“…The newly developed EOSQ-SELF holds promise for assessing HRQoL from the perspective of older children and adolescents with EOS. 27 This questionnaire was recently validated in patients aged 8 to 18 years who were able to answer the survey questions. Questions from the EOSQ-24 pertaining to caregiver burden and satisfaction were eliminated and questions about participation, sleep, appearance, and relationships were added.…”

“…The newly developed EOSQ-SELF holds promise for assessing HRQoL from the perspective of older children and adolescents with EOS 27 . This questionnaire was recently validated in patients aged 8 to 18 years who were able to answer the survey questions.…”

Early Onset Scoliosis and Adolescent Idiopathic Scoliosis: A Review of the Literature and Correlations With Pulmonary Dysfunction

“…This evidence supports the increasing need for medical care teams to utilize PROMs in the ongoing treatment of children with EOS and AIS for not just lung dysfunction but overall health, with lung dysfunction being a major component. The 24-Item Early Onset Scoliosis Questionnaire (EOSQ-24) and Early Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF) are valid methods of collecting this data through both a proxy and the children themselves (respectively) that care teams can easily integrate into their plans by administering during a visit [ 64 ]. There also exist a variety of HRQOL questionnaires/surveys that may assist in providing more well-rounded care in the treatment of children with AIS that are available online [ 65 ].…”

Parent-patient Discrepancies in the Quality of Life Assessment of Early-onset Scoliosis: A Comparison Between 2 Questionnaires Completed on 2 Different Time Points – A Preliminary Report

“…[4][5][6][7] Recently, Matsumoto et al developed the EOSQ-SELF survey, a novel self-reported questionnaire that assesses HRQoL in older children ( > 8 y) and adolescents. 8 They reported promising results in terms of the construct validity and reliability of this questionnaire. Adaptation of this questionnaire by clinicians and researchers will allow them to obtain information easier and more relevant as it is answered directly by the patients themselves.…”

“…Over the years, this questionnaire has been utilized for numerous studies and it has been validated in multiple languages including Turkish 4–7 . Recently, Matsumoto et al developed the EOSQ-SELF survey, a novel self-reported questionnaire that assesses HRQoL in older children (>8 y) and adolescents 8 . They reported promising results in terms of the construct validity and reliability of this questionnaire.…”