Parent Perspectives Regarding Care Delivery for Children With Idiopathic Toe Walking to Inform an American Physical Therapy Association Clinical Practice Guideline : Pediatric Physical Therapy

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RESEARCH REPORTS

Parent Perspectives Regarding Care Delivery for Children With Idiopathic Toe Walking to Inform an American Physical Therapy Association Clinical Practice Guideline

Barkocy, Marybeth PT, DPT, PCS; Muir, Nancy PT, DPT, PCS; Le Cras, Sally PT, DPT, PCS; Brausch, Shannon PT, DPT; Hoffman, Nicole PT, DPT; Bouck, Julie PT, MPT; Hendrix, Ingrid MILS, AHIP; Thomas, Cecile SPT; Foulk, Allison SPT; Quatman-Yates, Catherine PT, DPT, PhD

Author Information
doi: 10.1097/PEP.0000000000000820

INTRODUCTION

Toe walking in children older than 2 years may indicate an underlying neurologic, orthopedic, neuromuscular, or neuropsychiatric diagnosis.1,2 A thorough history and physical examination are important for differential diagnosis.3,4 Children who do not have an identifiable medical or neuropsychiatric cause for toe walking are often diagnosed with “idiopathic toe walking” (ITW), which affects up to 5% to 12% of all children.5–7 Although termed “idiopathic,” a number of potential etiologies have been proposed including genetic, neurodevelopmental, and sensory processing impairments.8

Some children with ITW outgrow toe walking, while others persist.5 Persistent toe walking may result in equinus contractures, abnormal bone structure adaptations, pain, and impaired quality of life.9–12 Interventions for ITW include serial casting, orthoses, physical therapy (PT), botulinum toxin A injections, orthopedic surgery, and sensory interventions.13–15 However, there is little high-quality research regarding appropriate interventions, long-term outcomes, and prognostic variables. There are no current evaluation and treatment guidelines available for this diagnosis, thus parents may receive mixed messages from healthcare professionals regarding treatment approaches. Development of a clinical practice guideline (CPG) addresses this concern from a rehabilitation perspective and can guide PT care for children with ITW.16

Pediatric physical therapists from 6 institutions formed a guideline development group in 2017 to create an American Physical Therapy Association–sponsored ITW CPG. The Institute of Medicine standards for CPGs call for consumer representation in guideline development as key stakeholders for product use.17 The CPGs developed with key stakeholders input can improve outcomes and enhance value for all users.18 Since parents represent key stakeholders for a CPG on the PT management of ITW, a survey was developed and distributed to gather their input. The purposes of this publication were to (1) explore and characterize PT ITW care experiences from the parent perspective to inform development of a CPG and (2) identify strengths and gaps in care perceived by this key stakeholder group to optimize PT care for children with ITW.

METHODS

A descriptive survey study design was used. A centralized Institutional Review Board approval was obtained, and the University of New Mexico Health Sciences Center (UNM HSC) served as the primary review board. Children's Hospital Colorado, Cincinnati Children's Hospital Medical Center, Children's Minnesota, Primary Children's Hospital, and Ohio State University Health Science Center provided local approval and data-sharing agreements. The survey was delivered using REDCap (Research Electronic Data Capture) to support electronic data collection and management.19 Data were collected between February 4, 2019, and November 9, 2019.

Survey Design

The survey (see Supplemental Digital Content 1, available at: https://links.lww.com/PPT/A324) was designed to identify and explore parents' care experiences and perceptions and to identify care strengths and gaps for children with ITW. There are no valid surveys that met the goals of this project, so the questions were designed to be exploratory and capture descriptive information. Survey items were created on the basis of literature review and the clinical expertise of the authorship team. Two pediatric physical therapists who treat children with ITW and a parent stakeholder piloted the survey draft and provided feedback. The research team used this feedback to refine the questions and survey structure in REDCap before final distribution.

The REDCap survey included an embedded consent, instructions, and 48 questions divided among 10 sections about experiences and perceptions related to ITW diagnosis, referral patterns, PT evaluation, and interventions. Free response boxes were incorporated after each survey section such that participants could provide unstructured comments. Pilot testing indicated that it would take participants approximately 10 to 15 minutes to complete the survey.

Participant Recruitment

Parents whose children received PT treatment for ITW were eligible to complete the survey. Members of the authorship team distributed the survey link and information about the study to health care professionals and professional organizations by word of mouth, social media, text messaging, and email. Current and former patients from the electronic medical records of the authors' institutions were contacted via phone, text messaging, word of mouth, email, or flyer distribution. Contact information for parents was safeguarded according to local institution's information security policies.

Participants voluntarily answered survey questions and were informed that the results would be disseminated with publication. No identifying information was collected. There was no financial compensation for participants.

Data Analysis

Data were included in the analyses if the participants met the following criteria according to parent report: their child had no known medical or neuropsychiatric condition associated with toe walking and their child received PT services for ITW. In addition, only completed surveys with or without optional comments were included. Quantitative data were analyzed using descriptive statistics available through Microsoft Excel for Office 365. The study team reviewed the open response comments as a group. Representative quotes were selected through an iterative consensus process to exemplify common themes or help contextualize the quantitative data.

RESULTS

A total of 122 surveys were initiated with 104 completed. Of the completed surveys, 6 parents reported that their child did not receive PT services and these were excluded. The remaining 98 surveys were analyzed. Of the participants included in the analysis, 71% reported that their child had completed PT treatment at the time of the survey. Children were 41% male and 59% female. Survey results, including parent comments, had wide variability in ITW diagnosis and referral processes, PT evaluation and treatment, and parents' experiences and perceptions related to PT care. The full set of parent comments is shown in Supplemental Digital Content 2, available at: https://links.lww.com/PPT/A325. Representative quotes for the open feedback responses are shown in Table 1.

TABLE 1 - Representative Parent Quotes
Topic Representative Quotes
Diagnosis and Referral Process The first orthopedic specialist we saw...gave him braces to wear at night. At that time, I feel like if my son could have started PT..., we could have avoided the problems he is experiencing now.
We were told casually by certain people, medical and non-medical that he would grow out of it. Instead, I like to say he “grew into,” meaning the habit just got worse with age.
We have found many doctors don't take it seriously...basically told us that if it didn't bother our son, it shouldn't bother us, and he seemed annoyed when we kept wanting a solution....
I have always been the one pushing for a referral.
PT Evaluation and Plan of Care There wasn't so much a “discussion” as a very blunt assessment and recommendation.
We had three different therapists during a few months of PT. Every therapist had a different idea or thought process.
It would have been great to have had information from the outset about the different treatments for ITW and the order in which they are tried and why.
I wish we hadn't been given any timeline, because we were first told in months, and we are now 2.5 years into PT with no clear end in sight.
Satisfaction and Confidence With PT Care Our physical therapist did her best, but she had not worked with an idiopathic toe walker before.... She was just sort of reading things between sessions and trying out ideas until we ran out of sessions on our prescription.
Our local physical therapist was not educated in the condition and was more or less guessing on the best course of action.
There was a weird dynamic between the PTs and orthopedists at our hospital...the physical therapist wasn't “allowed” to explain the other therapies, and she couldn't “overstep” in telling me things about treatment and prognosis.
I believe that PT did help him overall & without it, I believe the outcomes to this day would be worse...I believe, overall, that the PT, casting & bracing treatments, along with my TEAM of providers, have made a tremendous difference in my child's life.
Perceptions of Children's Experiences With PT She has gained a lot of confidence in her physical “normality” now and the way she walks.
He said, “I didn't care.” He was glad it [PT] was over so his life wasn't interrupted.
His therapists became his friends.
Doing the games more than once and doing the same thing each visit. It did get boring for him.
PT was a waste of time. [My daughter] was noncompliant at home and we ended up casting at age 11.
Abbreviation: PT, physical therapy.

Diagnosis and Referral Processes

Parents and other family members were often the first to express concern about their child's toe walking (82%). Parents first mentioned their concerns about their child's toe walking to a medical provider at a median child age of 3 years (range: 0-12 years). Referral to PT and other providers was often delayed from parents' concern about their child's toe walking expressed to their health care provider. Children were referred to PT at a median age of 4 years (range: 1-14 years) and to other providers at a median age of 4 years (range: 1-13 years). Only 40% of participants felt that their child was referred to PT at the best age for successful treatment, while 36% reported that they felt that their child was not referred to PT at the best age, and 24% reported that they were unsure. Of the parents who provided free-response comments related to their child's age at the time of referral, many commented that they would have preferred referral to PT when their child was younger (Table 1).

Parents were referred to a variety of specialty providers for their child's toe walking. A majority of parents (72%) reported that physical therapists were the first specialists involved in evaluating their child's toe walking. Orthopedists were the second highest initial specialists seen for evaluation of toe walking (27%), followed by occupational therapists (15%), neurologists (10%), orthotists (5%), and physiatrists (2%). Children often had many providers involved in their ITW care. Excluding their primary care provider, 62% had 2 to 3 care providers and 20% of children had 4 to 5 care providers. Other providers included orthotists (46%), orthopedists (41%), occupational therapists (35%), neurologists (19%), chiropractors (3%), physiatrists (3%), and vision therapists (2%).

Many parents reported that they received mixed messages about the diagnosis of ITW and its implications for development. More than half (57%) of the parents reported that a health care provider said that their child would outgrow toe walking. Open comments revealed it was common for parents to feel their concern about their child's toe walking was of greater concern to them than to their health care provider (Table 1).

PT Evaluation and Plan of Care

The majority of participants (81%) reported that PT was the primary treatment for their child's toe walking; however, parents reported varied PT service delivery (Table 2). Most participants reported that the PT treatment plan, frequency, and duration were discussed during their child's evaluation. Many participants communicated that the physical therapist incorporated parent and child priorities into the treatment plan and sought their input regarding best treatment options for their child.

TABLE 2 - Parent Reports of PT Service Delivery
Yes No Unsure
Physical therapist discussed treatment plan 87% 8% 5%
Physical therapist discussed treatment frequency/duration 82% 14% 4%
Physical therapist incorporated patient/family goals into plan of care 76% 10% 14%
Physical therapist sought parent input regarding best interventions for child 75% 16% 9%
Physical therapist provided information on all important interventions 60% 30% 10%
Physical therapist provided recommendations to follow-up if new concerns arise 60% 33% 7%
Physical therapist provided recommendations for PT reassessment after discharge 59% 26% 15%
Physical therapist provided education about typical gait 47% 40% 13%
Parent received information from PT evaluation 85% 12% 3%
Parent received treatment recommendations 77% 19% 4%
Parent received information about possible outcomes 64% 30% 6%
Parent felt educated about ITW 63% 32% 5%
Abbreviations: ITW, idiopathic toe walking; PT, physical therapy.

Parents described various experiences with education about their child's diagnosis. Many received information about PT evaluation findings, but only 64% felt informed about their child's prognosis and only 63% felt educated about the ITW diagnosis. Fewer than half recalled being educated about the typical development of walking. Many participants (77%) reported that they received information about treatment recommendations for their child, but only 60% of participants felt that they were provided with information on all interventions deemed important (Table 1). Likewise, just more than half (60%) reported that they were provided with information on when to return to PT if there were new or ongoing concerns about their child's ITW or when to follow up for reassessment (59%).

Satisfaction and Confidence With PT Care

Fewer than half (47%) of the parent participants reported that they were very satisfied with the PT treatment their child received. Of the remaining participants, 34% were somewhat satisfied and 19% were not satisfied. Only 30% felt that PT was very effective in correcting their child's ITW, while 41% felt that it was somewhat effective, and 29% felt that it was not effective. In addition to Table 2, which provides a breakdown of parents' experiences with specific aspects of PT service delivery, the open response comments provide additional insight into participants' experiences and perceptions with PT (Table 1).

Parents described varying levels of confidence in their physical therapists' ability to treat their child. Only 55% were confident in their physical therapist, whereas 36% were not confident, and 8% were unsure about their physical therapist's ability to treat their child. Review of parent open comments indicated that some parents perceived that their treating physical therapist was not well educated about ITW, lacked experience treating ITW, or did not effectively communicate the PT care plan (Table 1).

A few of the open comments pertained to variable experiences and perceptions on the continuity of care and collaboration between health care providers. A positive example shared by a parent described how the referring physician would hold her child accountable for his actions and keeping up with PT, and the various members of the health care team were always in contact with each other. Other comments indicated that collaboration and continuity were not always evident, even among the physical therapists involved in a child's care.

Parent Ratings of Importance of Care Components

A majority of parents felt the following were very important aspects of general ITW care for parents to know: how to access PT services, which health care providers treat ITW, which health care providers diagnose ITW, and how a diagnosis of ITW is made (Table 3). Likewise, parents felt that the following were very important aspects of PT care for ITW for parents to know: findings from the PT evaluation that inform the recommendations for PT treatment, home program after PT discharge, expected outcomes from PT treatment, anticipated frequency and duration of PT treatment, follow-up with PT after discharge, reasons for discharge from PT, and expectations for the PT evaluation.

TABLE 3 - Parents' Assessments of the Importance of PT Care Components
Very Important Somewhat Important Not Important
Physical therapist's findings that influence care recommendations 99% 1% 1%
How to access PT services 98% 2% 0%
Home exercise program after discharge 96% 4% 0%
Expected outcomes from PT 94% 5% 1%
Which providers treat ITW 93% 7% 0%
Recommendations for frequency of care 92% 8% 0%
Recommendations for duration of care 88% 11% 1%
Recommendations for follow-up after discharge 88% 12% 0%
Reasons for discharge 77% 22% 1%
Which providers diagnose ITW 76% 20% 4%
Expectations for PT evaluation 73% 26% 1%
How ITW diagnosis is made 72% 24% 4%
Abbreviations: ITW, idiopathic toe walking; PT, physical therapy.

Parent assessments of the importance of specific ITW treatment options varied (Figure). Specifically, the majority of parents noted that stretching, strengthening, home exercise program, bracing, and balance/postural training were very important. Reactions were more variable, but still largely favorable, for serial casting and sensory treatments. Support for surgical intervention, vision therapy, Botox, and “wait and see” approaches was mixed, with a similar number of parents reporting these as very important or not important. Some participants expressed frustration regarding education and selection of interventions for their child's toe walking (Table 1).

F1
Fig.:
Parents' assessments of the importance of treatment options for idiopathic toe walking.

Perceptions of Children's Experiences With PT

In the open comments, parents noted a range of perceptions regarding how their child felt about toe walking before and after PT. Prior to PT, some parents felt that their child was embarrassed and concerned about his or her ITW. Others felt that their child was unaware or too young to understand, while some felt that their child did not perceive it as a problem. After PT, some parents reported that their child was proud of his or her improvements. Others noted that their children seemed more aware of their toe walking but were indifferent about it (Table 1).

A number of parents described what they felt their child liked about PT, which included personal characteristics about the physical therapist such as the therapist was sweet and kind and had a positive and friendly attitude. Some parents noted that their child loved how interactive PT sessions were and felt their child often viewed it as “playtime.” Others emphasized that the therapists helped their child feel comfortable and listened to their child.

Some parents shared what they felt their child disliked about PT. Repeated responses included home exercises, stretching, repetition, and missing other activities such as playdates with friends to attend PT. In some cases, parents felt that the child's dislike for PT may have negatively impacted their child's outcomes. A number of parents felt that the effectiveness of PT may have been influenced by their child's motivation, degree of engagement with PT, and extent to which their child was personally concerned about his or her ITW.

DISCUSSION

Parents are key stakeholders for children with ITW, and their experiences and perspectives offer valuable insights for care delivery. The goal of this survey was to gain parent perspectives on PT care for their child with ITW and identify strengths and gaps in care to inform CPG development. This parent survey is the first of this magnitude and scope to gain input from this key stakeholder group for children with ITW.

The findings from the survey were consistent with the results of a previous qualitative study in which parents perceived that physical therapists and other health care providers varied in knowledge of ITW and how to treat it.20 This may explain why many of the parent participants in this study felt “somewhat confident” or “not confident” in their physical therapist's ability to treat ITW. The results of this survey also aligned with findings from a large international study of 908 medical providers, including physical therapists, who concluded that ITW is a challenging diagnosis with limited knowledge and consensus for evidence-based treatment strategies.21 The lack of consensus regarding best treatment strategies underscores a need for knowledge synthesis and translation efforts, such as a CPG, to inform provider diagnosis and treatment approaches. The parent survey results support the need for knowledge translation tools such as decision trees and family education guides.

The results of the parent survey reinforce the need for a CPG to specifically guide PT evaluation and treatment of children with ITW. More than 80% of children in the study sample were initially referred to PT for toe walking management. Therefore, PT evaluations often represent the first opportunity for parents and children to be educated about ITW and treatment options. The parent survey identified multiple strengths and weaknesses of physical therapist service delivery, which could be informative for the development of recommendation statements for the CPG. Strengths identified included routinely informing families about PT evaluation findings and plan of care recommendations and incorporating patient and family goals and priorities when developing a plan of care.

Although parents felt that their goals and priorities were often taken into account, survey results and comments suggested that some parents may receive biased or incomplete information from care providers around timing and types of intervention for children with ITW. In addition, some parents perceived that their physical therapist may have lacked the knowledge base or skills to effectively treat ITW. Recommendations in the CPG directly related to systematic and comprehensive communication of information about ITW, evaluation results, and treatment options could improve the consistency of care and improve perceptions about physical therapists' knowledge base and skills for caring for children with ITW.

A CPG with evidence-based care recommendations would support physical therapists' ability to educate and communicate with other providers more effectively about diagnosis, evidence-based treatment options, outcomes, prognosis, and long-term follow-up.22 Many children have multiple providers involved in their care, so consistency in ITW care recommendations and communication across providers is especially important for families. A CPG for PT management of children with ITW could serve as a way to clarify the role of physical therapists in treating this patient population, as well as describe potential service delivery expectations and outcomes for children who receive PT for their ITW. Based on the survey results, the following topics will be addressed in the CPG: (1) specific diagnostic signs and symptoms for when a PT evaluation for ITW is warranted, (2) optimal timing for referrals to PT, (3) strategies to optimize parental participation about the timing and type of intervention, and (4) suggestions for providers on how to communicate expectations for PT evaluation and treatment.

The parent survey results identified a gap in the shared decision-making practices around PT management of children with ITW, which could be narrowed by the CPG. Shared decision making between parents and providers is cited as the preferred model for treatment decisions when evidence is inconclusive or there is not a single, best, evidence-based approach to care.23 These may be referred to as preference-sensitive decisions since the desirability of the intervention may be strongly dependent on individual patient/family preferences, values, and goals.24 Idiopathic toe walking can be a complex diagnosis with multiple treatment options that lack a strong evidence base, and natural history and prognosis are not well understood at this time. Therefore, many of the intervention decisions for ITW may be considered preference-sensitive.

Shared decision making is thought to be enhanced in pediatric contexts when families have quality information about the condition, perceive multiple care options, and have access to patient and family-friendly resources and tools that provide high-quality presentation of evidence-based treatment options with their associated risks and benefits.25 Parent survey comments and responses suggested that parents value education and information about diagnosis and treatment options and welcome opportunities to be involved in ITW care decisions. In addition to the CPG, supplemental materials that include family-friendly knowledge translation tools and resources describing the pros, cons, and expected outcomes for the various PT interventions could facilitate shared decision making between families and health care providers.26 Based on the results of the parent survey, knowledge translation tools will be created to guide and describe referral processes, PT screening and evaluation approaches, PT interventions, and discharge and follow-up after the PT episode of care to reduce variability in care improve satisfaction with outcomes.

Study Limitations

Several limitations should be considered when interpreting the results and generalizability of this study. First, due to anonymous respondents, the authors were unable to determine the geographic representation of the sample. It is possible that the institutions of the investigators are overrepresented. However, the variability in care reported suggests a relatively heterogeneous sample. Second, the survey used was not a validated instrument but rather an exploratory tool developed to gain broad insight into parent experiences and perceptions. Future qualitative or mixed-methods research should aim to explore parent experiences and perceptions of care in more depth. Third, it is possible that experiences and perceptions may vary depending on the age at which a child began PT for ITW or other patient or family-specific characteristics. This study was designed to have parents retrospectively share their experiences with PT for ITW and did not allow for direct study of the relationship between these variables and outcomes. Fourth, participation in PT was a criterion for participating in the survey, so the results did not reflect the experiences and perceptions of parents whose children did not receive PT. Finally, the parents in this study served as proxies for their children when reporting on child experiences and outcomes for some items; future research could include direct child reports.

CONCLUSIONS

Evidence-based practice incorporates best available evidence with clinician expertise and patient and family values and priorities. This study explored patient and family experiences and perspectives, which reinforced the need for an evidence-based CPG to guide PT care for children with ITW and development of family-friendly decision aids. Parents' responses to the survey indicated a need for greater understanding by pediatric physical therapists about the diagnosis, etiology, and natural history of ITW; greater consistency in ITW management recommendations from pediatric physical therapists and other health care providers; earlier referrals; improved parent education about ITW diagnosis, prognosis, and treatment options; and expanded opportunities for parents and children to engage in shared decision-making processes around care. These perspectives are important for CPG development and underscore the importance of developing family-friendly resources and decision support tools for this diagnosis to reduce variability in care, reduce costs, improve outcomes, and enhance overall care experiences and satisfaction.

ACKNOWLEDGMENTS

The authors thank the parents of children with ITW for their survey responses; Sandra Kaplan, PT, DPT, PhD, for her guidance and assistance with the ITW CPG process and parent survey development; and Jodi Schilz, PhD, for her assistance and advisement of the DPT students as director of research in the UNM DPT program.

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Keywords:

Clinical Practice Guideline (CPG); Idiopathic Toe Walking (ITW); parent survey; shared decision making

Supplemental Digital Content

© 2021 Academy of Pediatric Physical Therapy of the American Physical Therapy Association