Patient-Reported Outcome Measurement Information System (PROMIS) Scores in Pediatric Idiopathic Toe Walkers

Abstract

Background: Idiopathic toe walking (ITW) can result in early contact with the health care system and be distressing for patients and their families. The natural history of ITW is poorly characterized. Deciding how and when to intervene can be difficult. Patient-reported outcomes are utilized in the clinical setting to assess patient factors and indications that may better inform treatment plans. Patient-Reported Outcomes Measurement Information System (PROMIS) is an instrument designed to collect patient-reported outcomes. Minimum clinically important differences in PROMIS metrics have been established to facilitate clinical relevance and utility of these metrics. The purpose of this study was to characterize the patient perspective of ITW by utilizing the PROMIS scores. Methods: Retrospective chart review was performed to identify children aged 5 to 17 with a diagnosis of ITW treated at a single tertiary care center between 2017 and 2020. Inclusion criteria were a diagnosis of ITW and completion of a PROMIS questionnaire. Exclusion criteria were neurologic disease, autism, and previous surgical treatment. Demographic, physical exam, treatment, and available motion analysis data were collected. PROMIS scores for the following domains were available: Mobility, Peer Relationships, and Pain Interference. Results: Forty-five children were enrolled. Seventy-three percent of PROMIS scores were patient reported while the remainder were parent reported. PROMIS score means for the cohort by domain were Mobility: 45.2±8.2 (P<0.000); Peer Relationships: 46.4±11.6 (P=0.047); and Pain Interference: 47.4±9.5 (P=0.67). Motion analysis data, available for 11 children, noted age-matched gait velocity negatively correlated (r s=−0.652, P=0.03) with Peer Relationships. No correlations were found between other aspects of gait, body mass index, or limitations in dorsiflexion and PROMIS domains. Parents reported lower Mobility scores than children did. There were no other significant differences between patient-reported and parent-reported PROMIS scores. PROMIS scores did not differ significantly between those <10 years and those ≥10 years. Conclusion: In this cohort of 45 otherwise healthy children without other neurologic diagnoses, there are both clinically and statistically significant differences in PROMIS means between our cohort and the healthy age-matched population. These differences manifested in worse peer relationships and mobility scores. Level of Evidence: Level IV.

Current Management of Idiopathic Toe-Walking Gait in Children and Young People in the UK: A Cross- Sectional Survey to Reflect Physiotherapists’ and Surgeons’ Perspective

“…Despite existing literature favouring range of motion as the primary outcome when exploring ITW, functional issues were considered a key indicator for all four interventions for ITW by respondents to our survey and the importance of functional impact was also highlighted within qualitative responses. This reflects growing evidence of the impact ITW in childhood has on long term quality of life and social / functional outcomes and would be an important factor to consider in future research [25,26] Qualitative data highlighted ongoing debate and uncertainty regarding the natural history of toe-walking gait in a healthy population and how physical, and social impacts of the gait pattern changes over time [8]. Interpretation of current evidence on natural history appears to influence decision making and treatment planning for children who exhibit ITW in the UK.…”

Health-related Quality of Life in Idiopathic Toe Walkers: A Multicenter Prospective Cross-sectional Study

“…With a median physical domain score of 54%, the ITW group seemingly has greater impairment than several other foot and ankle disorders, including surgically managed clubfeet (median: 75%), Ponseti managed clubfeet (median: 91.7%), and flexible flatfeet (mean: 64%). 14,15 In a recent retrospective study of 45 children with ITW, Lindsay et al 16 utilized the Patient-Reported Outcomes Measurement Information System to demonstrate impairments in mobility and peer relationship domains compared with a health age-matched population. This in part echoes the impairments seen in the OxAFQ_C domains adding further weight to the argument that ITW is not an entirely benign presentation.…”

“…In a recent retrospective study of 45 children with ITW, Lindsay et al 16 utilized the Patient-Reported Outcomes Measurement Information System to demonstrate impairments in mobility and peer relationship domains compared with a health age-matched population. This in part echoes the impairments seen in the OxAFQ_C domains adding further weight to the argument that ITW is not an entirely benign presentation.…”