Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitation.1,2 With increasing life expectancy, individuals with CP are reaching adulthood in greater proportions.3-6 Currently, more than 90 % of individuals with CP are living beyond the age of 18 years.3,7 Under these circumstances, understanding their transition to adulthood becomes a relevant aspect.

Transitions are points between developmental stages that are accompanied by changes in the environment or demands for new skills.8 For adolescents, this means moving towards independence in finances, housing, and relationships, among other areas.9 However, during the transition to adulthood, a significant number of adolescents and young adults with CP have restrictions in participating autonomously in several aspects of life. Studies show that they participate less in experiences such as living alone, having a paid job, and in romantic and sexual relationships than typically developing individuals.10

To understand the development of autonomy in participation youths must speak for themselves, as their perception often differs from the perception of caregivers.11 The Rotterdam Transition Profile (RTP) was developed9 to assess autonomy in participation in several life areas during the transition to adulthood of youths with chronic health conditions. Originally developed in the Netherlands using the Dutch language, the RTP was translated into English and is currently used in transition research.9,12

Research using the RTP has shown that youths with CP have less autonomy in participation in employment, finances, housing, romantic relationships, sexuality, and transportation than their typical peers.13,14 RTP results are associated with the levels of gross motor and manual function, education, daily activities, and participation.9 Challenges in acquiring autonomy during transition to adulthood may result in unemployment, lack of personal fulfillment, and low quality of life.15,16

However, the literature on the acquisition of autonomy in participation is still incipient. This is especially true regarding the Brazilian population, mainly due to the lack of research targeting this life stage and the lack of tools to assess this outcome. Therefore, this study aims 1) to cross-culturally adapt the RTP questionnaire; 2) to characterize the levels of autonomy in participation of Brazilian youth with CP; and 3) to explore associations between the RTP and functional level, gender, age, and educational level. The results will make the RTP available for use in Brazil, and provide preliminary insights on the levels of autonomy in participation of youths with CP, and their associated factors.

In total, 56 youth with CP participated in the study (Table 1). There were at least three representatives from each geographic region of Brazil.

The RTP is an innovative instrument available to categorize the autonomy in participation of youth with CP, in different life areas. Increasing clinical and research interest in supporting the transition to adulthood demands new tools such as the RTP to become available.

When translating tools, balancing the literal and the conceptual meaning of the content is a challenge, as some expressions may not have an exact substitute in other languages or may be unusual.21 When adapting a tool to another language, efforts are needed to minimize misunderstandings, as this can lead to inaccurate interpretations. Thus, special attention was paid to the feedback from the final users during the validation. Internal consistency was considered good,31 with the same test-retest reliability of most items, which is a positive indication of adequacy of the RTP Portuguese version.

Low reliability in specific items may be due to the sample size being lower than what is recommended by COSMIN.24 Additionally, when looking at individual results, we noticed that most of the changes from test-retest were towards a lower level of autonomy, i.e., unlikely to be explained by developmental changes. It is possible that some youths have never reflected about their autonomy, or perhaps felt embarrassed to demonstrate low autonomy when interviewed. These observations warrant further investigation of RTP reliability and stimulate additional research to understand how much autonomy is part of conversations with youths with CP. Furthermore, as no data on the reliability of the original version of the instrument were published, the present study contributes to filling a literature gap.12

Overall, the transition to adulthood of youths with disabilities, such as CP, may be more complex than for typically developing individuals, as several aspects related or not to the disability itself, such as skills needed for health maintenance, insufficient experience in activities, social isolation, and parental education are critical.15,32,33 Our results highlight that Brazilian youth with CP may need more support and develop specific strategies to achieve full autonomy in most areas assessed. However, it is worth mentioning these findings illustrate the autonomy levels of youths with CP who are able to respond to the RTP, and cannot be extended to youths with severe cognitive impairments.

In the studied population, the area of highest concern was housing, with 89.3 % of participants reporting no autonomy or still acquiring autonomy to live independently. Similar unsatisfactory results were observed by Donkervoort et al.,9 as 75 % of Dutch youth with CP reported not having living autonomy. Van Gorp et al34 reported that youths in their middle and late 20 s with higher GMFCS levels tend to have lower independence in housing. Additionally, other factors that may negatively impact the acquisition of autonomy in housing for youth with CP include lower rates of formal employment and increased financial instability over the years.

In contrast with our findings, Dutch youths with CP have reported high levels (90 %) of autonomy in transportation compared to Brazilian peers, where only 41 % were autonomous. This difference may be explained by discrepancies across countries regarding accessible public transportation and safety in public places. For education, in our sample, 75 % of the participants completed or were attending professional education, however, only 37.5 % were involved in some form of employment. Differently, nearly 80 % of youth with CP without intellectual disability in Sweden were involved in some form of employment or professional education,35 which suggests challenges faced by youths from low and middle-income countries.

Intimate relationships and sexuality are other potential areas of concern for youth with CP during transition to adulthood. In our results, only eight (14 %) participants had a romantic relationship or partner and twice that amount (28.6 %) reported not having experienced a romantic relationship yet. Regarding sexuality, 32 % of the sample reported having no experience with kisses, caresses, and sexual intercourse, while 44.6 % reported having experience with sexual intercourse. The results are in agreement with another study where approximately half of the youth with CP had experience with intimate relationships and 5 % were currently living with a partner.35 These findings highlight the need for multidisciplinary teams to support youth with CP regarding this important aspect of life.

It is known that the transition of care is complex, and health services for youths with childhood-onset disabilities need to evolve.36,37 Regarding rehabilitation services, most youth with CP (69.3 %) reported attending services adequate to their age. However, no information was collected about type and focus of services delivered, or the level of satisfaction of youths with the services. Recent evidence has shown that for French youths with CP, the levels of satisfaction with motor rehabilitation have decreased from childhood to adolescence and young adulthood.36 Little is known about rehabilitation services provided to youth with CP around the world, especially in Brazil, thus these aspects need to be explored in future studies.

The area with the highest levels of autonomy in our sample was leisure, with 73.2 % of youths reporting going out with friends. Similar results were found in Dutch and Swedish youth with CP.9,35 However, compared to adolescents in the general population, youth with CP may spend less time with friends,38 and their satisfaction with the frequency and type of leisure activities they attend should be explored in more detail.

As expected, age was significantly correlated with several RTP domains, indicating that participants become more autonomous as they grow older, except for housing and rehabilitation services, which may rely more on environmental factors. These results corroborate findings from longitudinal studies.9

After correcting for age, autonomy in participation was significantly associated with participant and context-related factors. GMFCS and MACS levels seem to be relevant factors to the acquisition of autonomy, as individuals with lower functional levels may experience less autonomy in the areas of education and employment, finances, housing, transportation, and services and aids. Similar influence of functional levels was observed by Alriksson-Schmidt et al.,39 as Swedish youth with CP with better functioning were more likely to live independently, and those with higher MACS and GMFCS levels needed more personal assistance in daily life. Occupational status and personal finances were also associated with MACS,35 with those with the mildest disabilities being more likely to be employed.38

Unexpectedly, in our study, those with higher motor disability levels had higher autonomy in care demands. We hypothesize that their increased need for assistance during their development may have favored autonomy in this area. However, further research is needed to clarify this finding.

Exploring other aspects of participation, studies have highlighted context-related factors as central to understanding the participation of individuals with disabilities,40-42 which is supported by our findings. Participants' higher educational levels were associated with higher autonomy in transportation, highlighting a possible role of education as a pathway to autonomy. In contrast, higher caregiver education was associated with decreased autonomy in finances, transportation, and sexuality. Environmental factors such as parents' and caregivers' characteristics are complex to understand, as aspects such as protective parenting style and parental stress may impact attendance in domestic life and relationships.43,44

Interestingly, household income was associated with decreased autonomy in leisure activities. While the availability of resources has been reported as a facilitator for participation, families with youth with CP may have lower expectations regarding future and success compared to families with typically-developing youths.45 Therefore, particularities of family dynamics or attitudes may be potential barriers to the acquisition of autonomy. As participation is a complex construct, the unidimensional analysis of the factors associated with autonomy in participation used in our study may have limited our comprehension of some relevant factors, thus further investigation using more comprehensive models is warranted.

Overall, the RTP is a short and useful tool to identify autonomy in participation in key life areas that need attention during transition to adulthood. Clinicians may need to provide examples to facilitate understanding of some items, and should support respondents so they are comfortable talking about their autonomy. The availability of this instrument will support the transition planning of Brazilian youth, by highlighting their strengths and challenges, as well as potential areas for intervention. Our RTP findings point to critical areas such as relationships, sexuality, transportation, and housing. Information and support in these areas are essential to guide transition programs in Brazil.

The RTP Brazilian Portuguese version is cross-culturally adapted for use with the Brazilian population. RTP revealed good levels of autonomy in leisure and rehabilitation, and low levels of autonomy in housing, intimate relationships, and finances among Brazilian youth with CP. Autonomy in participation was associated with age, GMFCS, MACS, and with context-related factors, which may act as barriers or facilitators in the acquisition of autonomy.