Transition readiness assessment in cerebral palsy: A qualitative descriptive study

Abstract

Aim

To explore the utility of a commonly used transition readiness assessment tool (Transition Readiness Assessment Questionnaire [TRAQ]) among adults with cerebral palsy (CP) and caregivers.

Method

This was a qualitative descriptive study using 21 semi‐structured interviews (seven adults with CP, nine caregivers, five dyads) and matrix analysis.

Results

Participants had many suggested edits to comprehensively assess transition readiness. Several adults with CP expressed that the tool appropriately assessed important skills for entering adulthood. Questions on managing medications and activities of daily living were identified as most relevant. However, caregivers found it difficult to answer questions as a caregiver and not the patient and felt that the tool was less applicable because they had been managing their child's needs for years. Distinguishing physical versus cognitive abilities presented another challenge because several participants noted that they or their child cognitively knew how to do certain tasks but were limited physically.

Interpretation

Assessing transition readiness is an important part of the transition to adulthood. Individuals with CP have a wide range of abilities that may not be adequately captured by TRAQ. A CP‐specific tool should be sure to distinguish between these varied abilities and clearly delineate the caregiver role for young people with varying levels of support needs.

We conducted qualitative interviews with young adults with cerebral palsy (CP) and/or their caregivers to explore the relevance and utility of a commonly used transition readiness assessment tool. Participants had many suggested edits and additions, including the need to distinguish between physical and cognitive abilities and to clarify the caregiver's role. Transition readiness assessments are an important part of supporting the transition to adulthood, and a CP‐specific tool may help ensure comprehensive assessment of transition readiness throughout this process.

This original article is commented by Krach on pages 1333–1334 of this issue.

Abbreviation

TRAQ

Transition Readiness Assessment Questionnaire.

What this paper adds.

• Transition readiness assessments may not adequately capture the transition needs of young people with cerebral palsy.

• Such tools should distinguish between different types and levels of functional ability.

• The caregiver role and anticipated support needs should also be clarified.

Cerebral palsy (CP) is the most common lifelong physical disability, ¹ and there is growing emphasis on its lifelong (as opposed to strictly childhood) nature and the transitions that occur throughout the lifespan. ² As individuals with CP live longer, a transition from pediatric‐based to adult‐based healthcare settings in an age‐appropriate and developmentally appropriate manner is required to continue providing optimal care. The healthcare transition process for individuals with chronic conditions is defined as the ‘purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child‐centered to adult‐oriented health care systems’. ³ However, patients with childhood‐onset medical complexity in general, including CP, face many barriers transitioning their care to adult settings and require more guidance and coordination to avoid poor transitions, which have been linked to worsening health, lower quality of life, and increased hospitalizations. ⁴ , ⁵ , ⁶ , ⁷

The factors influencing this transition for young people with CP exist at multiple levels, from the individual's and family's experience of transition and transition readiness, to the availability (or lack thereof) of adult CP services, and absence of transition policies. ⁷ Additionally, there are systemic barriers in the healthcare setting that can affect the transition process, including inaccessible healthcare facilities (e.g. lack of accessible medical equipment) and ableist provider attitudes. ⁸ , ⁹ , ¹⁰ In the USA, there are few structured CP transition programs ¹¹ and best practices for transitioning young people with CP have not yet been established. ¹²

A recommended part of the healthcare transition for adolescents and young persons in general is evaluating transition readiness using a ‘transition readiness assessment’ administered throughout the transition process (i.e. beginning in adolescence through to the completion of transition of care) to prepare and guide young people and their families. ¹³ A transition readiness assessment can help young people and families evaluate self‐management skills and set goals, and can also help healthcare providers frame discussions around healthcare transition and guide plans to achieve these goals. ¹³ , ¹⁴ However, implementation of this recommendation is variable and young persons with CP often lack transition readiness and support. ¹² Additionally, it is unclear how to best assess transition readiness among individuals with a condition as heterogeneous as CP.

One well‐established, validated self‐report transition readiness assessment tool, the Transition Readiness Assessment Questionnaire (TRAQ), facilitates assessment of five domains: managing medications; appointment keeping; tracking health issues; talking with providers; and managing daily activities. ¹⁴ While validated for use with young people with special healthcare needs, TRAQ is not specific to a particular diagnosis or condition. ¹⁵ TRAQ is commonly used, having been translated into multiple languages, adapted for several specific diagnoses (e.g. epilepsy, spina bifida), and used in many clinical programs to guide healthcare transitions. ¹⁶ , ¹⁷ This includes our institution, where TRAQ has been integrated into the electronic health record and is being used by several departments. In a 2020 systematic review of transition readiness measures, TRAQ was also identified as the most scientifically sound measure. ¹⁸ However, as TRAQ is diagnosis‐neutral, it is uncertain whether it suitably assesses transition readiness and captures the most relevant transition needs among such a functionally diverse condition like CP, and if not, what might be lacking from a patient and family perspective. To begin to address this gap, we used qualitative methods and matrix analysis to explore the relevance and utility of a commonly used transition readiness assessment (TRAQ) among adults with CP and caregivers.

METHOD

The overarching question ¹⁹ of this study was: What is the perceived relevance and usefulness of TRAQ for assessing transition readiness among young persons with CP? To answer this question, we conducted a qualitative descriptive study to explore, understand, and describe the varied, subjective perspectives of participants regarding TRAQ, with the long‐term goal of optimizing transition readiness assessment among young people with CP. ¹⁹ , ²⁰ , ²¹ We conducted semi‐structured interviews with adults with CP, caregivers of adults with CP, and dyads (adult with CP and a caregiver), exploring their understanding and perceived relevance of TRAQ and suggested edits or additions. Qualitative methods and findings are reported according to the Standards for Reporting Qualitative Research. ²²

This study was reviewed and approved with the determination of exempt status by the Colorado Multiple Institutional Review Board because it was found to be of minimal risk, involving only the use of interview and focus group procedures (protocol no. 22–1248). The Colorado Multiple Institutional Review Board also approved a waiver of documentation of consent, although we obtained verbal consent from all participants at the start of each interview. Our study procedures and interview guide were informed by input from our institution's Patient and Family Research Advisory Panel.

To address reflexivity, we discuss the relevant researcher characteristics of the study team. The first author is a pediatric‐trained and adult‐trained physiatrist researcher who focuses on the transition to adulthood and aging in individuals with a lifespan disability (CS). To minimize potential bias and power dynamics, she neither recruited nor interviewed participants because she provided clinical care for them. The study team also included a masters‐level qualitative analyst with experience interviewing adults with CP and caregivers (CG), and a qualitative methodologist (BD) who provided methodological guidance and rigor. The qualitative analyst (CG) recruited participants; she conducted interviews together with a complex care pediatrician researcher (HF). HF did not provide direct clinical care to any of the participants involved but has a clinical and research interest in healthcare transitions for young people with disabilities. Our team also included a pediatric neuropsychologist specializing in the transition to adulthood (CP) and a clinical rehabilitation psychologist (LB), both of whom have also conducted research with young persons with CP and other disabilities and who provided expertise on social–emotional considerations during the transition to adulthood in this population.

Participants

This project took place within a specialty rehabilitation medicine clinic for adults with CP at an academic adult health center. We recruited adults with CP and caregivers of adults with CP. Eligibility criteria for adults with CP included: (1) aged between 18 years and 40 years; (2) English‐speaking; and (3) had been seen in the clinic at least once. Eligible caregivers of adults with CP were the primary support person for an adult with CP who met the study criteria and were English‐speaking. Because we sought to use the transition experiences of adults with CP who had completed the healthcare transition to reflect on the relevance and usefulness of TRAQ, we chose to include young persons with CP (or their caregivers) as opposed to adolescents. Having completed the transition to adult‐based rehabilitation medicine care, participants were better able to comment on the importance of skills assessed using TRAQ to their healthcare transition and identify what gaps remained based on their experiences. We used purposeful sampling to recruit participants from a variety of demographic backgrounds (including self‐reported race and ethnicity, when available, based on the National Institutes of Health Demographics Information categories) and levels of function according to Gross Motor Function Classification System (GMFCS) level. ²³

We first screened the electronic health records of all patients seen in the clinic. Eligible participants were contacted via phone or e‐mail up to three times. Whomever was listed as the primary contact in the electronic health record (patient or caregiver) was contacted first. Adults with CP and caregivers were both invited to participate unless significant cognitive, communication, or behavioral challenges prevented participation of the adult with CP. When the adult with CP was able and wanted to participate, a collaborative decision was made about whether to conduct a dyadic (patient and caregiver) or individual interview. For those who participated in the dyadic interviews, we used several strategies to allow the adult with CP to participate independently. We asked dyads to allow the adult with CP to respond to questions first, before their caregiver. Additionally, we asked the adult with CP to respond to their caregiver's answers to agree or disagree with, or expand upon, their caregiver's response. Finally, for adults with CP using an augmentative and alternative communication device, we offered to send our interview guide ahead of time to allow them additional time to generate responses, although no participant opted to do so. Participants received an electronic gift card for US$30 on completion of the interview.

Data collection

Interviews were conducted by a complex care pediatrician (HF) and a masters‐level qualitative research analyst (CG). No clinicians directly involved in the care of participants took part in recruitment or conducted interviews. We first administered TRAQ to patients or caregivers. ¹⁴ Of note, TRAQ can be completed by a caregiver when needed with the following instructions: ‘If your youth or young adult is unable to complete the tasks below on their own, please check the box that best describes your skill level’. The interview guide asked about overall thoughts on completing TRAQ and then walked participants through each set of questions, asking about their relevance and any suggested edits or additions (Appendix S1). We also asked participants which questions they felt were most relevant to their care and any additional topics they would add.

Before the interview, participants provided verbal consent to participate and shared basic demographic data. Interviews lasted approximately 60 minutes and took place over secure videoconference (Zoom). All interviews were audio‐recorded and transcribed by a professional transcription service. We reached thematic saturation after 21 interviews, determined via concurrent coding, assessment of the information gathered, and the existing literature on qualitative sample size. ²⁴ , ²⁵ , ²⁶ , ²⁷ , ²⁸ Specifically, the study team met regularly throughout data collection to share, discuss, and reflect on the interviews conducted. Additionally, interviewers also completed interview summaries after each interview, which we reviewed as a study team. Patterns of potential themes started to emerge after five to seven interviews, at which point we began our formal analysis with codebook development, coding, and matrix development as detailed under ‘Data analysis’. Our ability to simultaneously proceed with data collection and analysis allowed us to determine the point at which data began to repeat and no new important concepts emerged, thus indicating thematic saturation.

Data analysis

We analyzed the data using matrix analysis, a rapid qualitative analysis method that uses a table to facilitate comparison of data across cases and within individual cases. ²⁹ , ³⁰ , ³¹ First, we developed a codebook to facilitate the creation of our matrix domains. We used both inductive (i.e. codes that emerged from the data) and deductive (i.e. codes developed a priori based on TRAQ topics and interview guide questions) coding. The coding team (CS, HF, CG) independently reviewed three interview transcripts to identify emergent topics. After the team calibrated and reconciled the definitions and applications of the codes, the codebook was finalized. The coding team met multiple times during this iterative, team‐based process. Approximately 20% of the transcripts were triple‐coded by the coding team members; the rest were independently coded by CG. ³² We used the ATLAS.ti software (Lumivero, Denver, CO, USA) for data management and coding. Once coding was completed, we generated reports of quotes clustered according to codes and code groups.

The results of these query reports were then summarized within the cells of the matrix, with participants organized into rows and codes into columns (Table S2). Columns and rows were both summarized across participants, allowing for pattern recognition across and within cases. We felt this approach fit the structured nature of our topic, interview guide, and participant responses. The use of a matrix or other ‘rapid’ analysis techniques for qualitative health data is increasing in popularity, ³³ , ³⁴ , ³⁵ , ³⁶ , ³⁷ with similar validity to traditional thematic approaches. ³⁸ This rapid, ‘action‐oriented’ approach also allowed us to analyze data in a more timely manner, ³⁴ allowing us to use findings to inform decision‐making at our institution as we continue to optimize our CP transition processes. This is aligned with a broader goal in health services research to make research rapid, responsive, and relevant to maximize the impact on healthcare organization and delivery. ³⁹ In the ‘Results’ section, we summarize the findings across participants within thematic and TRAQ topic areas.

RESULTS

We conducted 21 interviews (seven adult with CP interviews, nine caregiver interviews [one interview included two caregivers], five dyadic interviews with both an adult with CP and caregiver; 27 participants in total). The demographic characteristics of adults with CP and caregivers are displayed in Table 1. Adults with CP were aged 28 years 4 months on average (range: 20–37 years). While adults with CP had relatively equal male and female representation based on self‐reported sex, caregiver participants were mostly female (n = 14/15). Participants mostly identified as White, although 24% of adults with CP (n = 5) and 13% of caregivers (n = 2) identified as Hispanic/Latino(a). While we had representation across GMFCS levels, the most common GMFCS level was level V (transported in a manual wheelchair; n = 8, 38%). Just over 80% of adults with CP were living with their primary caregiver at the time of this study (n = 17, 81%).

Table 1.

Self‐reported demographic data of participants in the qualitative interview (for caregiver‐only interviews, data about the adult with cerebral palsy for whom they provide care are included).

	Adults with cerebral palsy (n = 21)	Caregivers (n = 15)
Age, mean (SD), range	28 years 4 months (5 years 4 months), 20–37 years	–
Sex
Male	11 (52)	1 (7)
Female	10 (48)	14 (93)
Ethnicity
Asian	1 (5)	–
Black/African American	2 (10)	1 (7)
White	15 (71)	12 (80)
Other	2 (10)	1 (7)
More than one ethnicity	1 (5)	1 (7)
Ethnic group
Hispanic or Latino/a	5 (24)	2 (13)
Not Hispanic or Latino/a	16 (76)	13 (87)
GMFCS level
I: independent ambulator without limitations	4 (19)	–
II: independent ambulator with limitations	2 (10)	–
III: ambulatory with mobility device	4 (19)
IV: self‐mobility with limitations, may use powered mobility	3 (14)
V: transported in manual wheelchair	8 (38)	–
Primary insurance
Public (Medicaid, Medicare, Tricare)	10 (48)	–
Private	11 (52)	–
Secondary insurance
Public (Medicaid, Medicare)	10 (48)	–
Private	0 (0)
No secondary insurance	11 (52)	–
Highest educational level
High school degree (GED or equivalent)	13 (62)	1 (7)
Some college	4 (19)	4 (27)
Associate's degree	0 (0)	2 (13)
Bachelor's degree	2 (10)	5 (33)
Master's degree	1 (5)	2 (13)
Doctorate	1 (5)	1 (7)
Employment
Employed, full‐time	4 (19)	10 (67)
Employed, part‐time	3 (14)	2 (13)
Disabled/unable to work	7 (33)	0 (0)
Unemployed	7 (33)	0 (0)
Homemaker	0 (0)	2 (13)
Retired	0 (0)	1 (7)
Living with primary caregiver	17 (81)	–

Note: Data are n (%) unless stated otherwise.

Abbreviations: GED, General Educational Development; GMFCS, Gross Motor Function Classification System.

In this article, we describe participants' perspectives on the TRAQ overall (e.g. answer choices, clinical applications), and individual TRAQ domains and questions, as well as overarching themes that cut across the different TRAQ domains.

Overall impressions

Many participants found TRAQ relatively easy to understand; adults with CP in particular found that it reminded them of the necessary steps toward independence. However, a couple of others felt that TRAQ was too broad and not specific enough for CP.

Answer choices

TRAQ provides the same responses on a 5‐point ordinal scale for each question assessing a skill: (1) No, I do not know how; (2) No, but I want to learn; (3) No, but I am learning to do this; (4) Yes, I have started doing this; and (5) Yes, I always do this when I need to. ¹⁴ Many found that the answer choices sometimes made it difficult to answer a particular question, especially when the question did not feel applicable to their daily life. As such, many participants suggested adding a ‘not applicable’ option or an open‐ended answer choice. However, some participants liked the answer choices and felt they were appropriate. A couple of participants appreciated that there was an answer choice indicating interest in learning a skill.

Questions and domains

Participants' detailed impressions of the relevance and suggested edits to each section of questions are displayed in Table S1. The five sections of questions in TRAQ were: (1) managing medications; (2) appointment keeping; (3) tracking health issues; (4) talking with providers; and (5) managing daily activities. When asked which of the sections of the questions was most relevant to their lives, participants had varied perspectives, and some could not pick just one. However, the most commonly cited sections were managing medications and managing daily activities. Participants suggested many additional domains and questions that may be relevant to include for young people with CP, including equipment and therapy needs, social connectedness, and community resources (Table S1).

Clinical applications

Regarding the clinical use of TRAQ, many participants felt it was important for someone to follow up on their responses to TRAQ. Providers could follow up by providing the education or resources needed to learn to do some of these skills. They could also use responses to guide care or use them as a jumping‐off point in determining a plan toward independence or transition. Several suggested that a social worker could follow up and provide needed resources and services. A few caregivers felt that, when completed by a caregiver, any ‘no’ response should flag a provider to attend to this care gap. Another suggested that responses to TRAQ could be tracked over time to guide transition; however, for caregivers of young people with severe disabilities who will remain dependent on their caregivers, this could get ‘tiresome’ (participant 16, caregiver).

Overarching themes

In addition to specific perceptions on the TRAQ questions, answer choices, instructions, and applications, we identified two overarching themes throughout the interviews: (1) clarifying the caregiver role and (2) distinguishing between physical and cognitive abilities.

Clarifying the caregiver role

As noted earlier, TRAQ can be completed by a caregiver, when needed, with the following instructions: If your youth or young adult is unable to complete the tasks below on their own, please check the box that best describes your skill level. Many participants found the instructions for caregiver completion confusing. Participants felt it was ‘silly’ to ask about their abilities (participant 8, caregiver). One even thought that caregivers may take offense to having their ‘skill level’ assessed and suggested framing this as ‘understanding’ instead:

… that skill level can be like, ‘Oh, so now you want to know what my skills are?’ The wrong person can take that the wrong way… You're dealing with very sensitive people. Especially when it's with your kid. You sometimes feel like, ‘What do you mean, my skill?’ I think some people would take offense to that…They're trying to understand what I need and what can help me versus you testing what my skills are (participant 11, caregiver).

Even for caregivers who initially understood the instructions, there was subsequent confusion when answering the questions and many found themselves answering on behalf of their child's skills or on their own personal medical needs. Many caregivers who completed TRAQ based on their own abilities found it somewhat ‘silly’ or ‘overkill’ because they had been managing their child's care for years or decades:

Again, I guess I feel it's kinda like overkill. Yeah, we obviously have been doin’ this for a long time. If we weren't, [Name] wouldn't be getting’ to her appointments. Yeah. Again, I think if you're talkin’ to a young adult, I think they're very relevant (participant 8, caregiver).

Several caregivers shared that if the goal is to assess the young person's ability to transition to adulthood, then the questions should assess their abilities rather than those of their caregivers. However, they understood that there are situations in which the young person will always require the support of the caregiver, so it may be appropriate to assess the caregiver's abilities in those situations. But in this case, it still seemed ‘odd’ because the caregiver had often been managing those things for years (participant 16, caregiver). In this regard, several participants suggested having separate questionnaires, one for caregivers if they provide total or near‐total care and one for the young persons. In which case, the caregiver questionnaire could ask about how much help they give their adult child with each skill.

Distinguishing between physical and cognitive abilities

Several participants felt that TRAQ needed to better distinguish between someone's cognitive abilities (i.e. cognitive and conceptual understanding of how to do a task or being able to direct a caregiver in a task) and physical abilities (i.e. physical ability to do the task). For some, this resulted in frustration while completing TRAQ. One caregiver during a dyadic interview noted that the appointment keeping questions were relevant for her adult daughter's care but the wording of the questions and answer options did not differentiate between her high cognitive ability and significant physical disability:

I think that these are definitely all relevant to appointment keeping. The issue, again, is, as [Name] has already stated, it's very difficult for her physically to do any of these things. I'm feeling a little frustrated for her. She might be feeling frustrated because here we go again. Questions five through eleven, we can't answer or she can't. I shouldn't say can't answer, but the choices don't apply to [Name] and what she would like to do but can't do because of her physical abilities. I think these are all great questions (participant 3, caregiver in dyad).

Some participants specified that a ‘not applicable’ option could help distinguish between someone's physical and cognitive abilities. Additionally, others thought that the questions themselves should be worded in ways to differentiate between cognitive and physical abilities (e.g. Do you know how to take medications correctly and on your own? vs Do you take medications correctly and on your own?). Similarly, others suggested editing the question or answer choices to identify when someone has an accommodation or assistance from another person to accomplish a task.

Similarly, some participants felt that TRAQ should be updated to reflect current technologies like online patient portals, online shopping, food and grocery delivery services, and other advancements that may allow a young person to be more independent:

Maybe there needs to be a sub‐question on there, alone, or with assistance, or a couple of sub‐questions that might apply to that, or virtually or online. Can he order something from [the store] online and have it delivered? Could you order groceries online and have them delivered? Yes, but usually accessing a store or service necessarily is in person, I would say, with assistance (participant 4, caregiver in dyad).

In particular, these types of support and resources may allow young persons with more significant physical disabilities to achieve higher levels of independence in managing their care and activities.

DISCUSSION

Using qualitative methods and matrix analysis, we explored the relevance and utility of a commonly used transition readiness questionnaire among adults with CP who had recently completed the transition to adult‐based rehabilitation care. While many participants overall found TRAQ easy to understand and found its domains relevant to their or their adult child's care, there were many suggested edits and additions. Importantly, given the heterogeneous nature of CP, participants emphasized the importance of clarifying the caregiver's role when assessing transition readiness and distinguishing between an individual with CP's physical and cognitive abilities. One study assessing general transition readiness assessment tools in young people with CP and spina bifida found that important condition‐specific needs were not adequately captured. ⁴⁰ As far as we are aware, this is the first qualitative study exploring in depth the use of TRAQ for adults with CP with a wide range of physical and cognitive abilities.

One important finding to emphasize is the need to differentiate between one's physical and cognitive abilities in assessing transition readiness. CP is an extremely heterogeneous diagnosis, and individuals with CP can have a host of comorbidities, including visual issues (10%–100%), hearing impairments (30%–40%), communication difficulties (up to 85%), and intellectual disability (30%–50%). ⁴¹ , ⁴² , ⁴³ , ⁴⁴ Assessing cognition in individuals with CP with severe speech or motor impairments is particularly challenging and may lead to an underestimation of intelligence. ⁴⁵ When assessing readiness for transition to adulthood, adults with CP with significant physical disability but high cognitive functioning may be able to understand how to do certain tasks or direct a caregiver in completing tasks, but may be physically unable to do so independently. For adults with CP, this discrepancy between physical and cognitive abilities is unlikely to change significantly over time; thus, independence in adulthood may look different because they may always require assistance for physical aspects of care. Using a transition readiness questionnaire that offers different question or answer options to distinguish between these abilities and that clarifies the young person's ability to understand and participate in their care may more accurately capture one's potential and goals for independence. Clinically, more in‐depth assessment of physical and cognitive abilities as an individual approaches adulthood may help care teams identify appropriate and individualized supports. Additionally, participants suggested including current technologies in a transition readiness assessment, such as online patient portals and food/grocery delivery services. Including these types of technologies may better assess one's potential for independence, particularly if they have a more significant physical disability.

A second finding that warrants further discussion is the role of the caregiver during the transition to adulthood, particularly for adults with CP with intellectual disability. As a reminder, TRAQ can be completed by a caregiver when needed with the following instructions: If your youth or young adult is unable to complete the tasks below on their own, please check the box that best describes your skill level. Many caregiver participants found these instructions confusing, and those who completed TRAQ based on their skill level found it ‘silly’ or ‘overkill’. While TRAQ has been validated for use in young people with special healthcare needs by Sawicki et al., ¹⁵ those with cognitive impairment included in their study were still judged able to complete the questionnaire on their own; this probably excluded those with more moderate or severe cognitive impairment or intellectual disability. ¹⁵ Some transition readiness assessments have been specifically designed for individuals with intellectual disability, ⁴⁶ although these existing assessment tools still focus on developing the young person's self‐management skills. However, for individuals with more severe cognitive impairment or intellectual disability, focusing on self‐management skills may not be appropriate; thus, more critical aspects of transition may be missed altogether (e.g. shared/supported decision‐making, educational/vocational decisions, supported living environments). Given the clinical spectrum of CP severity, from those who are able to live independently beginning in young adulthood to those who require full‐time care throughout their lives, participants in our study suggested having a separate questionnaire for caregivers if they provide total or near‐total care. Even for those young people with CP who receive significant assistance from caregivers in adolescence, the potential for increased independence with such skills should also be explored.

In addition to these findings, participants in our study shared many suggested edits and additions to TRAQ to fully assess transition readiness for young people with CP. Many condition‐specific transition readiness assessment tools have been developed. ⁴⁶ , ⁴⁷ , ⁴⁸ Some of the tools for those with neurological disorders have begun incorporating suggestions made by the participants in our study, such as assessing the need for assistance with cares in general and supports for decision‐making. ⁴⁶ However, our study suggests that a CP‐specific tool may also be helpful to capture the variety of needs and abilities among adolescents and young persons with CP. In particular, participants felt it was important for a tool to distinguish cognitive and physical abilities throughout the questionnaire (i.e. for specific skills); specify the role of adaptations and technology in activities of daily living; explore access to rehabilitative supports (e.g. therapies, equipment); and assess skills and needs beyond the healthcare setting (e.g. educational/vocational resources, social connectedness).

Participants appreciated the utility of evaluating transition readiness longitudinally and emphasized the need for a member of the healthcare team to follow up on responses to a transition readiness assessment. This could include a provider teaching or sharing information for learning new independence skills or a social worker providing resources or services. This aligns with transition best practices of using transition readiness assessments to teach, educate, and provide resources, to follow up on results, and to follow transition readiness over time. ¹³ A CP‐specific transition readiness assessment tool designed with stakeholder involvement could provide longitudinal opportunities to develop and optimize transition readiness for young people with CP, caregivers, and healthcare teams.

Importantly, TRAQ was developed and revised with young people aged 14 to 26 years. ¹⁴ , ¹⁵ , ¹⁶ Our study included adults with CP above this age range because our primary aim was to use TRAQ to explore the transition experiences of adults with CP and caregivers as an initial, exploratory step in determining whether or not a CP‐specific transition readiness assessment tool may be necessary. Inclusion of adults with CP above the validated age range is a limitation of this study; should a CP‐specific adaptation of TRAQ be developed, it will be important to focus this future work within the validated age range for TRAQ. Additionally, a major benefit of TRAQ is its ability to be completed in a busy clinic in 3 to 5 minutes. ⁴⁹ Participants in this study largely suggested adding questions and content to a CP‐specific assessment, rather than removing content, which could increase the time required to complete such a tool. Future work should consider the trade‐offs between additional content and additional completion time, although condition‐specific supplements to TRAQ have been developed for other neurological conditions such as spina bifida. ⁴⁸ The TRAQ‐Spina Bifida supplement added an additional 12 items to the 20‐item TRAQ with good internal reliability and criterion validity. These 12 items assess self‐management skills relevant to spina bifida, such as identifying signs of shunt malfunction and bowel and bladder management, and could serve as a model for developing a CP‐specific adaptation. ⁴⁸

This study has several additional limitations. First, TRAQ has been revised since this study started. ¹⁶ The domains are largely the same as the version of TRAQ used in our study, ¹⁴ with one main exception. The managing daily activities section was removed because these questions were the lowest discriminating items in a more recent study. Interestingly, this was one of the domains that participants in our study most frequently cited as most relevant to their lives. The heterogeneity of function among individuals with CP may render the managing daily activities section more pertinent to the transition to adulthood for young people with CP than young people with other chronic conditions or without CP. Second, the transferability of our findings ⁵⁰ to different populations may be limited for several reasons. We recruited participants from a single academic adult CP clinic; therefore, the perspectives from our participants may not transfer to different settings. A high proportion of adults with CP in our study lived with their primary caregiver at the time of the study (n = 17, 81%). While we did not assess the reasons why adults with CP lived with their primary caregiver, most adults with CP were non‐ambulatory (GMFCS levels IV and V, n = 11, 52%) and most interviews were dyadic with a caregiver or with a caregiver alone (n = 14, 67%), which may have contributed. Additionally, adults with CP who lived with their primary caregiver were either employed part‐time, disabled or unable to work, or unemployed. Therefore, the perspectives of a larger group of adults with CP who live independently and/or work full‐time may differ from those identified in our study. Additionally, caregiver participants were mostly female, White, and employed; thus, the perspectives of caregivers from different backgrounds may also differ. Finally, this study was conducted with English‐speaking participants, which may limit the transferability of the findings to non‐English‐speaking populations.

Transition readiness assessments are an important part of tracking and supporting the transition to adulthood. Individuals with CP have a wide range of physical, cognitive, and communication abilities that may not be adequately captured by current transition readiness assessments. A CP‐specific transition readiness assessment should ensure it distinguishes between these varied abilities and clearly delineates the caregiver role for young people with varying levels of support needs. Additionally, a CP‐specific tool could serve as a future model for other, similarly heterogeneous conditions. Future directions include assessing the provider perspectives of using TRAQ among individuals with CP and developing a CP‐specific transition readiness assessment tool, co‐developed with individuals with lived experience.

CONFLICT OF INTEREST STATEMENT

The authors have stated that they had no interests which might be perceived as posing a conflict or bias.

Supporting information

Appendix S1: Interview guide.

Table S1: Participant perspectives on subsections of the TRAQ.

Table S2: Matrix (Excel spreadsheet).

Sarmiento CA, Friedman H, Glaros C, Petranovich C, Brenner LA, Dorsey B. Transition readiness assessment in cerebral palsy: A qualitative descriptive study. Dev Med Child Neurol. 2026;68:1412–1420. 10.1111/dmcn.70215

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.