Comparison of Rating Scales in the Development of Patient-Reported Outcome Measures for Children with Eye Disorders

Abstract

Background A rating scale is a critical component of patient-reported outcome instrument design, but the optimal rating scale format for pediatric use has not been investigated. We compared rating scale performance when administering potential questionnaire items to children with eye disorders and their parents. Methods Three commonly used rating scales were evaluated: frequency (never, sometimes, often, always), severity (not at all, a little, some, a lot), and difficulty (not difficult, a little difficult, difficult, very difficult). 10 patient-derived items were formatted for each rating scale, and rating scale testing order was randomized. Both child and parent were asked to comment on any problems with, or a preference for, a particular scale. Any confusion about options, or inability to answer was recorded. Results 21 children (aged 5–17 years) with strabismus, amblyopia, or refractive error were recruited, plus one of their parents. Of the first 10 children, 4 (40%) had problems using the difficulty scale, compared with 1 (10%) using frequency, and none using severity. The difficulty scale was modified, replacing the word “difficult” with “hard.” 11 additional children (plus parents) then completed all 3 questionnaires. No children had problems using any scale. 4 (36%) parents had problems using the difficulty (“hard”) scale and 1 (9%) with frequency. Regarding preference, 6 (55%) of 11 children and 5 (50%) of 10 parents preferred using the frequency scale. Conclusions Children and parents found the frequency scale and question format to be the most easily understood. Children and parents also expressed preference for the frequency scale, compared with the difficulty and severity scales. We recommend frequency rating scales for patient-reported outcome measures in pediatric populations.

Collecting child-patient feedback: A systematic review on the patient-reported outcome measures for hospitalized children

“…Additionally, policies regarding measures to reduce missing data were mentioned in only four (23.52%) of the included studies 30,35,38,40 Interviews were conducted in only six (35.29%) of the included studies, and among them, five (83.33%) of the studies used the appropriate methods and techniques to transcribe the interview. 17,36,[40][41]48 Further, among the included studies, eleven (64.71%) utilized pilot testing to increase the clarity and validity of the instrument items and content validity of interview questions. 29,[33][34]36,[41][42]44,48 Children's age was considered in only three (17.65%) of the included studies.…”

“…17,36,[40][41]48 Further, among the included studies, eleven (64.71%) utilized pilot testing to increase the clarity and validity of the instrument items and content validity of interview questions. 29,[33][34]36,[41][42]44,48 Children's age was considered in only three (17.65%) of the included studies. These studies employed the following data collection processes: the school-agers coping inventory, 32 reductionistic and constructionistic steps, 41 and the Rasch measuring scale.…”

“…Uniquely developed questionnaires were used in seven (41.18%) of the included studies. Among the included studies, four studies used previously developed quality of life (QOL) questionnaires, 33,35,[38][39] one study used a child health questionnaire (CHO), 31 one study used a youth client satisfaction questionnaire (YCSQ), 42 three studies used an author-developed semi-structure interview, [40][41]48 one study used consumer satisfaction questionnaire (CSQ), 37 one study used kid count questionnaire (KCQ), 29 one study used an open ended questionnaire, 32 and the remaining studies used author developed survey questionnaires. 17,30,34,[43][44]…”

Treatment of amblyopia as a function of age

“…Lastly, current measurements of visual function in the clinician’s office do not necessarily reflect the functional consequences of amblyopia and its treatment and their effects on health-related quality of life or the economic consequences of the condition and treatment. New patient-derived instruments to assess functional vision in children, and health-related quality of life in children and their parents, are under development (Liebermann et al, 2016; Hatt et al, 2017). Appropriately designed, patient derived, questionnaire instruments can be used in both clinical and research environments without placing a significant burden on patient and families.…”

Patient-derived questionnaire items for patient-reported outcome measures in pediatric eye conditions

“…In subsequent phases of the study, we will apply binning and winnowing methods to create master questionnaires with Likert-type frequency-response options. We have previously found 20 that frequency-type response options are preferred to both difficulty-type and severity-type response options in pediatric populations. We plan to review patient feedback regarding wording and clarity of questions and to perform factor analysis and Rasch analysis to arrive at final, Rasch-calibrated and linguistically equivalent English and Spanish questionnaires.…”