Coordinated and multidisciplinary rehabilitation is essential to fully address the health problems encountered by individuals with cerebral palsy (CP) over their lifetime. Despite the fact CP is a lifelong condition, most research on rehabilitation for people with CP has been conducted in children (1). Although the cerebral lesions that interfere with the brain development are non-progressive, deteriorations occur early in all dimensions of the International Classification of Functioning with aging. In particular, mobility becomes increasingly limited, pain increases and cardio-vascular diseases and cognitive disorders develop earlier than expected (2–12). These changes in health status over the course of a person's life generate different medical and rehabilitation needs, which have recently become the object of a growing research interest in adults with CP. However, the provision of coordinated and multidisciplinary rehabilitation programs that adapt to each individual's evolving rehabilitation needs throughout the different phases of life is highly challenging for healthcare systems.

Pediatric and adult healthcare services are quite distinct and the transition to adult services is rarely smooth; people with CP often report experiencing a void when they leave the pediatric system (13–15). Although clinical guidelines for the childhood-adulthood transition have been established in different countries over the past 10 years (16, 17), young adults with CP continue to report that the transition between life phases is problematic (18). In France, the healthcare system provides 100% coverage of all healthcare expenditures under a national solidarity scheme (“Assurance Maladie – Sécurité Sociale”) to thirty chronic conditions, including CP, whereas other conditions receive 65–80% coverage. This extended financial coverage does not seem to avoid difficulties for people with CP in the transition phase. For instance, a regional study of 502 individuals with CP found that the use of medication increased with age, however the provision of physical types of health care (rehabilitation, physical medicine and rehabilitation follow-up, and provision of equipment) decreased, independently of ambulatory status. The drop in service provision occurred mainly after the transition to adult services (19). Individuals with CP frequently report that the transition between healthcare systems is a “brutal” experience. Furthermore, the transition to adult services occurs at a fixed age, which does not necessarily correspond to the individual's needs. It is highly likely that the period of transition actually starts during adolescence (≥12 yo) and ends in the late twenties (20). Indicators need to be determined so that transition between rehabilitation services can be tailored appropriately. To ensure the relevance of such evidence-based adaptations, public views must be taken into account to prioritize actions, establish the importance of specific outcomes and generate patient preference-informed guidelines (21).

The ESPaCe survey was a national survey designed to report the unmet needs and expectations about motor rehabilitation (MR) of children, adolescents and adults with CP and their families in France (22, 23). The questionnaire was co-designed by service users and professionals to evaluate chosen key indicators of the health care user's experience such as self-reported environmental factors (access to rehabilitation, MR coordination, rehabilitation settings etc.), rehabilitation service use (amount of physiotherapy, multidisciplinary teams etc.) and patient outcomes and experiences (satisfaction, impact on activities of daily living etc.). Evaluating the changes throughout the lifespan of such modifiable, self-reported factors would guide the national development of rehabilitation services that consider the different phases of an individual's life.

We hypothesized that MR environmental factors, service use and patient outcomes and experiences reported as indicators by people with CP would change between childhood and adulthood, and that some changes would occur during adolescence (12–17 yo) and others would occur in young adults (18–25 yo) or later in life, depending on the indicators.

The aim of this study was to report the changes in motor rehabilitation (MR) environmental factors, service use and patient outcomes between children and adults with CP and to identify if changes took place earlier or later than the standard division between pediatric and adult healthcare systems at 18 years.

This study explored the effect of age on a set of MR environmental factors, service use variables and patient outcomes, all of which were reported by people with CP or their main carer. Changes across the lifespan were reported, as hypothesized, for all indicators with, generally, less positive results in adults than children. A more detailed analysis using 4 age categories (2–11, 12–17, 18–24, >25) revealed a wide window of transition between childhood and adulthood that often does not correspond to the pediatric-adult healthcare organization divide. The findings of the study lead to implementing specific actions in motor rehabilitation services in adults, and also in the transition window starting at 12 and up to 24 years of age.

An important result of this study was for accessibility to rehabilitation services: finding an available physiotherapist was reported as highly difficult by almost half of children and an even greater proportion of adolescents and adults. Finding a physiotherapist trained in CP rehabilitation was even more difficult, and this difficulty was increased for adults. The accessibility issues we identified cannot be related to the direct financial cost of MR sessions, as care is fully covered for both children and adults with CP by the healthcare system in France. Instead, accessibility could rather be related to healthcare availability and organization. There was a marked switch in the setting in which rehabilitation was provided. Children and adolescents mainly attended MR in a healthcare organization setting while adults, particularly over 25 yo, mostly had rehabilitation sessions in private outpatient practices. Coincidently, a decrease in the presence of an MR coordinator and in the perceived communication between healthcare professionals was reported at adulthood. Moreover, a distinct lack of multidisciplinary management was observed in adults (41%) and adolescents (61%) compared to children (82%), in contrast with the recent call by the WHO for a stronger multidisciplinary rehabilitation workforce and promotion of the role of allied health professionals in a coordinated strategy aiming at better health outcomes (26). These changes that occurred around 18 years of age suggest that the pediatric healthcare system has well-identified and promoted rehabilitation pathways while the adult system may be less adapted to the needs of people with CP. A failure to provide a seamless transition has been well-described in adulthood (13–15) but has also been described much earlier in the transition from pre-school to school-based services (27), highlighting the need to consider a broader window of transition.

MR service use, especially PT, was reported by almost all participants, even if the rate was slightly lower in adults. This result was expected since, in France, PT is traditionally prescribed, and now recommended (28), as a first-line therapy; it is also consistent with a previous study of adults with CP in a region of France (29). The detailed analysis showed that the amount of weekly physiotherapy provided was lower in young adults than in children and adolescents, and decreased further after the age of 25 years. This finding is in line with data from many countries with different healthcare systems: US (30), Canada (31), UK (32), Australia (33) Singapore (34), as well as in low- and middle-income countries (35). The decrease in rehabilitation service use could be either related to the differences in healthcare provision offered in the French system after 18 years of age, or to a change in specific needs of individuals with CP.

User satisfaction is considered as a key indicator of healthcare service quality (36). Satisfaction with MR was found to be lower in adolescents and adults. Satisfaction with pain management during PT sessions was also lower in adolescents and adults. Lower levels of satisfaction indicate a larger gap between expectations and experiences: in the present study this gap is between perceived rehabilitation needs and care provision. Overall, the results showed a concomitant decrease in satisfaction, amount of rehabilitation, access to rehabilitation services and environmental factors with age. A previous study of satisfaction with MR in CP revealed independent determinants of patient satisfaction (23): higher special needs (pain, impairment severity), lower rehabilitation quality indicators (rehabilitation access, pain management, a lack of shared PT goals and a lack of care coordination), as well as being an adolescent predicted lower levels of satisfaction. Special needs during adolescence were also identified in the current study as the impact of MR on activities of daily living was reported to be less favorable in adolescents and young adults compared to children and adults.

The concurrent decrease in well-organized rehabilitation and patient satisfaction with age reflects an inadequacy between the changing needs of individuals with CP and the healthcare system. This inadequacy occurs roughly in parallel with a marked decrease in the social participation indicator. School attendance was reported below reference population levels for children (90%) and adolescents (77%) in the ESPaCe survey. This has also been well-described in Sweden with a lower rate than typically developing peers (37). Furthermore, the rate of ESPaCe respondents in employment was especially low (18%). “Late adulting” in several social and participation domains has been described in the Netherlands (20), and low levels of employment of people with CP have been reported in several countries (38, 39). These difficulties have been found even in high functioning young adults with CP who have no intellectual disability (40) and in other dimensions of participation like “having a cohabiting partner” or “having a biological descendance” (41). This parallel evolution between systems throughout the wide transition period from childhood to adulthood requires policy makers to develop national strategies that are adapted to the changing needs of individuals with CP in all domains.

This study, which focused on changes in rehabilitation system indicators and patient outcomes with age, brings a new, lifespan vision of how the French healthcare system is perceived and used by people with CP. The results provide grounds for proposing actions at the individual and at the system level: (1) Considering a larger window of transition starting from early adolescence and ending in the late twenties, (2) Developing MR programs that specifically address the needs of adolescents (3) Maintaining a multidisciplinary approach in adulthood (4) Providing access to MR professionals trained in CP at all ages and (5) Promoting pain management and shared goal setting during the MR at all ages but especially in adulthood. Finally, the appropriate management of the needs of people with CP, as reported in this and other studies, is highly challenging for national healthcare systems. This study provides yet further evidence of the need for comprehensive national strategies for the management of individuals with CP that jointly address healthcare, rehabilitation, educational, employment and social support systems.

The datasets presented in this article are not readily available because consent was not obtained to publish the anonymised data. Requests to access the datasets should be directed to Javier De la Cruz, javier.delacruz@salud.madrid.org.

Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. Written informed consent from the participants' legal guardian/next of kin was not required to participate in this study in accordance with the national legislation and the institutional requirements.

E. Bérard, M. Bodoria, J. Boivin, S. Brochard, G. Cornec, J. De la Cruz, I. Desguerre, G. Drewnovski, A. Fontaine, V. Gautheron, G. Geyer, A.-C. Guenier, Y. Le Lay, P. Toullet.

All authors listed have made a substantial, direct, and intellectual contribution to the work and approved it for publication.

We would like to thank the Fondation Paralysie Cérébrale, Paris, France for its support and funding as well as the co-funders of this work: Envoludia, Fédération Française des Associations des Infirmes Moteurs Cérébraux (FFAIMC), Société d'Etudes et de Soins pour les Enfants Paralysés et Polymalformés (SESEP), Caisse Nationale de solidarité pour l'autonomie (CNSA), KLESIA, L'Oréal Citizen Time.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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