Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Setting and Population
2.3. Outcome Measures
2.4. Statistical Analysis
3. Results
4. Discussion
5. Conclusions
Author Contributions
Funding
Conflicts of Interest
References
- Mutch, L.; Alberman, E.; Hagberg, B.; Kodama, K.; Perat, M.V. Cerebral palsy epidemiology: Where are we now and where are we going? Dev. Med. Child Neurol. 1992, 34, 547–551. [Google Scholar] [CrossRef] [PubMed]
- Paneth, N.; Hong, T.; Korzeniewski, S. The descriptive epidemiology of cerebral palsy. Clin. Perinatol. 2006, 33, 251–267. [Google Scholar] [CrossRef] [PubMed]
- Colver, A. Outcomes for people with cerebral palsy: Life expectancy and quality of life. Paediatr. Child Health 2012, 22, 384–387. [Google Scholar] [CrossRef]
- Hutton, J.L.; Pharoah, P.O. Life expectancy in severe cerebral palsy. Arch. Dis. Child. 2006, 91, 254–258. [Google Scholar] [CrossRef] [PubMed]
- Steinbeck, K.S.; Brodie, L.; Towns, S.J. Transition in chronic illness: Who is going where? J. Paediatr. Child Health. 2008, 44, 478–482. [Google Scholar] [CrossRef] [PubMed]
- Nieuwenhuijsen, C.; Donkervoort, M.; Nieuwstraten, W.; Stam, H.J.; Roebroeck, M.E. Experienced problems of young adults with cerebral palsy: Targets for rehabilitation care. Arch. Phys. Med. Rehabil. 2009, 90, 1891–1897. [Google Scholar] [CrossRef] [PubMed]
- Rutkowski, S.; Riehle, E. Access to employment and economic independence in cerebral palsy. Phys. Med. Rehabil. Clin. N. Am. 2009, 20, 535–547. [Google Scholar] [CrossRef]
- Bagatell, N.; Chan, D.; Rauch, K.K.; Thorpe, D. “Thrust into adulthood”: Transition experiences of young adults with cerebral palsy. Disabil. Health J. 2017, 10, 80–86. [Google Scholar] [CrossRef]
- Verhoef, J.A.C.; Bramsen, I.; Miedema, H.S.; Stam, H.J.; Roebroeck, M. E; Transition and Lifespan Research Group South West Netherlands. Development of work participation in young adults with cerebral palsy: A longitudinal study. J. Rehabil. Med. 2014, 46, 648–655. [Google Scholar] [CrossRef]
- Wiegerink, D.J.; Roebroeck, M.E.; van der Slot, W.M.; Stam, H.J.; Cohen-Kettenis, P.T. Importance of peers and dating in the development of romantic relationships and sexual activity of young adults with cerebral palsy. Dev. Med. Child Neurol. 2010, 52, 576–582. [Google Scholar] [CrossRef]
- Donkervoort, M.; Wiegerink, D.J.H.G.; van Meeteren, J.; Stam, H.J.; Roebroeck, M.E. Transition to Adulthood: Validation of the Rotterdam Transition Profile for Young Adults with Cerebral Palsy and Normal Intelligence. Dev. Med. Child Neurol. 2009, 51, 53–62. [Google Scholar] [CrossRef]
- Jacobson, D.N.O.; Lowing, K.; Hjalmarsson, E.; Tedroff, K. Exploring social participation in young adults with cerebral palsy. J. Rehabil. Med. 2019, 51, 167–174. [Google Scholar] [CrossRef]
- World Health Organization. Towards a Common Language for Functioning, Disability and Health ICF. Available online: https://www.who.int/classifications/icf/icfbeginnersguide.pdf (accessed on 31 July 2019).
- Hanes, J.E.; Hlyva, O.; Rosenbaum, P.; Freeman, M.; Nguyen, T.; Palisano, R.J.; Gorter, J.W. Beyond stereotypes of cerebral palsy: Exploring the lived experiences of young Canadians. Child Care Health Dev. 2019, 45, 613–662. [Google Scholar] [CrossRef] [PubMed]
- Imms, C.; Adair, B. Participation trajectories: Impact of school transitions on children and adolescents with cerebral palsy. Dev. Med. Child Neurol. 2017, 59, 174–182. [Google Scholar] [CrossRef]
- Cerebral Palsy in Adults. Available online: https://www.nice.org.uk/guidance/ng119/resources/cerebral-palsy-in-adults-pdf-66141606816709 (accessed on 11 August 2019).
- Chamberlain, M.A.; Kent, R.M. The needs of young people with disabilities in transition from paediatric to adult services. Eur. Medicophys. 2005, 41, 111–123. [Google Scholar]
- Magill-Evans, J.; Wiart, L.; Darrah, J.; Kratochvil, M. Beginning the transition to adulthood: The experiences of six families with youths with cerebral palsy. Phys. Occup. Ther. Pediatr. 2005, 25, 19–36. [Google Scholar] [CrossRef]
- Op Eigen Benen. Transitieproces Organisatorisch Verbeteren. Available online: https://www.opeigenbenen.nu/professionals/transitie-toolkit/transitieproces-organisatorisch-verbeteren/ (accessed on 18 October 2019).
- Cerebral Palsy Scotland. Preparing for the Move to Secondary School. Available online: https://cerebralpalsyscotland.org.uk/children/secondary-transition (accessed on 18 October 2019).
- Tragakes, E.; Brigis, G.; Karaskevica, J.; Rurane, A.; Stuburs, A.; Zusmane, E. Latvia: Health System Review. Health Syst. Transit. 2008, 10, 29–35, 211–238. [Google Scholar]
- Oortwijn, W.; Mosca, I.; Versteegh, M.; Bos, M. Ambulatory Care Sensitive Conditions in Latvia; World Health Organization Regional Office for Europe: Copenhagen Ø, Denmark, 2015; pp. 12–23. [Google Scholar]
- Tombaugh, T.N.; McIntyre, N.J. The mini-mental state examination: A comprehensive review. J. Am. Geriatr. Soc. 1992, 40, 922–935. [Google Scholar] [CrossRef]
- Measuring Health and Disability: Manual for WHO Disability Assessment Schedule (WHODAS 2.0). Available online: https://apps.who.int/iris/bitstream/handle/10665/43974/9789241547598_eng.pdf;jsessionid=652E0AD49C839634F899AACEC3BC368A?sequence=1 (accessed on 10 August 2019).
- Palisano, R.; Rosenbaum, P.; Walter, S.; Russell, D.; Wood, E.; Galuppi, B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev. Med. Child Neurol. 1997, 39, 214–223. [Google Scholar] [CrossRef]
- Spearman’s Correlation. Available online: http://www.statstutor.ac.uk/resources/uploaded/spearmans.pdf (accessed on 17 December 2018).
- Roebroeck, M.E.; Jahnsen, R.; Carona, C.; Kent, R.M.; Chamberlain, M.A. Adult outcomes and lifespan issues for people with childhood-onset physical disability. Dev. Med. Child Neurol. 2009, 51, 670–678. [Google Scholar] [CrossRef]
- Van der Slot, W.M.; Nieuwenhuijsen, C.; van den Berg-Emons, R.J.; Wensink-Boonstra, A.E.; Stam, H.J.; Roebroeck, M.E. Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J. Rehabil. Med. 2010, 42, 528–535. [Google Scholar] [CrossRef] [PubMed]
- Wiegerink, D.; Roebroeck, M.; Bender, J.; Stam, H.; Cohen-Kettenis, P. Sexuality of Young Adults with Cerebral Palsy: Experienced Limitations and Needs. Sex. Disabil. 2011, 29, 119–128. [Google Scholar] [CrossRef]
- Wiegerink, D.J.; Stam, H.J.; Gorter, J.W.; Cohen-Kettenis, P.T.; Roebroeck, M.E. Development of romantic relationships and sexual activity in young adults with cerebral palsy: A longitudinal study. Arch. Phys. Med. Rehabil. 2010, 91, 1423–1428. [Google Scholar] [CrossRef] [PubMed]
- Schmidt, A.K.; van Gorp, M.; van Wely, L.; Ketelaar, M.; Hilberink, S.R.; Roebroeck, M.E. Autonomy in participation in cerebral palsy from childhood to adulthood. Dev. Med. Child Neurol. 2019. [Google Scholar] [CrossRef]
- Whiteside, N.; Aleti, T.; Pallant, J.; Zeleznikow, J. Helpful or harmful? Exploring the impact of social media usage on intimate relationships. Australas. J. Inf. Syst. 2018, 22. [Google Scholar] [CrossRef]
Age in years, Me (IQR) | 18 (20–17) |
Age distribution, n (%) | |
<18 years | 27 (33) |
≥18 years | 54 (67) |
Gender, n (%) | |
Men | 41 (51) |
Women | 40 (49) |
GMFCS, n (%) | |
Level I | 36 (44) |
Level II | 24 (30) |
Level III | 13 (16) |
Level IV | 8 (10) |
MMSE, n (%) | |
30 points | 17 (21) |
28–29 points | 31 (38) |
26–27 points | 25 (31) |
24–25 points | 8 (10) |
Assessments | WHODAS 2.0 | ||||||
---|---|---|---|---|---|---|---|
Cognition | Mobility | Self-Care | Getting Along | Life Activities | Total | ||
GMFCS: | Level I–II | 1.8 (1.4–2.5) | 1.6 (1.4–2.4) | 1.5 (1.0–2.0) | 1.4 (1.0–2.0) | 1.9 (1.4–2.5) | 1.7 (1.3–2.2) |
Level III–IV | 1.7 (1.3–2.2) | 3.8 (2.9–4.6) | 3.0 (2.5–4.1) | 1.4 (0.9–1.8) | 2.4 (1.7–3.0) | 2.5 (2.1–2.7) | |
p-value | 0.40 | <0.01 | <0.01 | 0.42 | 0.05 | <0.01 | |
All: | 1.8 (1.3–2.3) | 2.2 (1.4–2.8) | 1.8 (1.0–2.9) | 1.4 (1.0–1.8) | 2.1 (1.5–2.6) | 2.0 (1.5–2.5) |
RTP Participation Domains | WHODAS 2.0 Domains | ||||
---|---|---|---|---|---|
Cognition | Mobility | Self-Care | Getting Along | Life Activities | |
Education and employment | −0.12 | −0.24 | −0.22 | 0.05 | 0.14 |
Finance | −0.13 | −0.15 | −0.30 | −0.01 | −0.14 |
Housing | −0.36 | −0.25 | −0.42 | −0.20 | −0.34 |
Leisure (social activities) | −0.48 | −0.34 | −0.27 | −0.19 | −0.30 |
Intimate relationships | −0.29 | −0.34 | −0.44 | −0.10 | −0.28 |
Sexuality | −0.35 | −0.30 | −0.46 | −0.19 | −0.33 |
Transportation | −0.35 | −0.64 | −0.75 | −0.22 | −0.45 |
RTP Participation Domains | WHODAS 2.0 Domains a | |||||||
---|---|---|---|---|---|---|---|---|
Cognition | Mobility | Self-Care | Life Activities | |||||
Leisure (social activities) | OR | 95% CI | − | − | − | |||
8.1 * | 2.6–24.8 | |||||||
Intimate relationships | − | − | OR | 95% CI | − | |||
7.5 *** | 0.9–61.8 | |||||||
Sexuality | − | − | OR | 95% CI | − | |||
9.4 ** | 1.2–77.0 | |||||||
Transportation | − | OR | 95% CI | OR | 95% CI | OR | 95% CI | |
6.9 * | 2.5–18.7 | 53.3 * | 6.7–424.0 | 8.4 * | 3.0–23.3 |
RTP Participation Domains | Age | GMFCS |
---|---|---|
Education and employment | 0.26 *** | −0.12 |
Finance | 0.37 * | −0.01 |
Housing | 0.31 ** | −0.16 |
Leisure (social activities) | 0.20 | −0.26 *** |
Intimate relationships | 0.14 | −0.26 *** |
Sexuality | 0.28 *** | −0.31 ** |
Transportation | 0.16 | −0.56 * |
RTP Participation Domains | Age | GMFCS a | ||
---|---|---|---|---|
Education and employment | OR | 95% CI | − | |
2.4 *** | 1.0–5.5 | |||
Finance | OR | 95% CI | − | |
2.1 ** | 1.3–3.2 | |||
Housing | OR | 95% CI | − | |
2.7 *** | 1.2–6.5 | |||
Leisure (social activities) | − | OR | 95% CI | |
0.6 *** | 0.4–1.0 | |||
Intimate relationships | − | OR | 95% CI | |
0.4 ¥ | 0.2–1.1 | |||
Sexuality | OR | 95% CI | OR | 95% CI |
1.6 *** | 1.1–2.5 | 0.3 *** | 0.1–0.9 | |
Transportation | − | OR | 95% CI | |
0.2 * | 0.1–0.5 |
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Rožkalne, Z.; Mukāns, M.; Vētra, A. Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors. Medicina 2019, 55, 737. https://doi.org/10.3390/medicina55110737
Rožkalne Z, Mukāns M, Vētra A. Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors. Medicina. 2019; 55(11):737. https://doi.org/10.3390/medicina55110737
Chicago/Turabian StyleRožkalne, Zane, Maksims Mukāns, and Anita Vētra. 2019. "Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors" Medicina 55, no. 11: 737. https://doi.org/10.3390/medicina55110737
APA StyleRožkalne, Z., Mukāns, M., & Vētra, A. (2019). Transition-Age Young Adults with Cerebral Palsy: Level of Participation and the Influencing Factors. Medicina, 55(11), 737. https://doi.org/10.3390/medicina55110737