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Can Patients and Families Read the Questionnaires for Patient-related Outcome Measures?

Taylor, Scott, MBBS (Hons), BMedSci*; Guirguis, Mina, MBBS, BMedSci; Raney, Ellen M., MD*

Journal of Pediatric Orthopaedics: May/June 2019 - Volume 39 - Issue 5 - p e397–e401
doi: 10.1097/BPO.0000000000001327
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Background: Patient-reported Outcome Measures (PROMs) quantifying health-related quality of life are widely used to evaluate illness and the impact of health care interventions. The questionnaires must be comprehensible by the persons completing them. Literacy Surveys in the United States reveal nearly half of the US adult population have a literacy level below the 8th grade. Recommendations are that health-related written material directed at adults should be at a reading level of grade 6 or below. Reading level for materials aimed at minor patients should be no higher than their grade level. Our aim was to determine the readability of pediatric orthopaedic PROMs as determined by a validated literacy tool.

Methods: A literature search was conducted to identify PROMs cited in pediatric orthopaedics. In total, 79 PROMs were identified. Only text-based PROMs that were developed in English for pediatrics and have published evidence of validation were included, leaving 35 outcome scores for analysis. Text was extracted and analyzed using the Flesch Reading Ease Score (FRES).

Results: Of 35 PROMs: 15 (43%) were general, 12 (34%) spine, 5 (14%) lower, and 3 (9%) upper extremity. Ten (29%) were designed to be completed by the caregiver, whereas 25 (71%) by the patient. Ten PROMs intended for completion by a parent had an FRES readability of 8th to 10th grade level with only 2 of 10 corresponding to that would be understood by the average adult. Of the 25 PROMs intended for completion by pediatric patients, only 4 (16%) had a FRES corresponding with the age group intended to complete them.

Conclusions: The majority of PROMs are written at a level of complexity higher than likely to be understood by the persons intended to complete them. This is of significance, given that researchers and practitioners alike rely on data from PROMs in drawing conclusions about the impact of orthopaedic conditions and their treatments on health-related quality of life. Analysis of easily comprehended PROMs will aid in the design of future scores to maximize their utility in research and clinical practice.

Level of Evidence: Level II—decision analysis study.

*Shriners Hospital for Children, Portland, OR

Alfred Hospital, Melbourne, Australia

None of the authors received financial support for this study.

The authors declare no conflicts of interest.

Reprints: Ellen M. Raney, MD, Shriners Hospitals for Children, 3101 SW Sam Jackson Park Road, Portland, OR 97239. E-mail: eraney@shrinenet.org.

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.