An exploratory study investigating the multidimensional factors impacting the health and well-being of young adults with cerebral palsy

References

• Kim K, Fox M. Moving to a holistic model of health among persons with mobility disabilities. Qual Soc Work. 2006;5:470–488.
   Google Scholar
• Putnam M, Geenen S, Powers L, et al. Health and wellness: people with disabilities discuss barriers and facilitators to well being. J Rehabil. 2003;69:37–45.
   Web of Science ®Google Scholar
• Becker H, Schaller J. Perceived health and self-efficacy among adults with cerebral palsy. J Rehabil. 1995;April/May/June:36–42.
   Web of Science ®Google Scholar
• Doralp S, Bartlett D. The prevalence, distribution, and effect of pain among adolescents with cerebral palsy. Pediatr Phys Ther. 2010;22:26–33.
   PubMed Web of Science ®Google Scholar
• Rosenbaum P, Paneth N, Leviton A, et al. Report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8–14.
   PubMedGoogle Scholar
• Frisch D, Msall ME. Health, functioning, and participation of adolescents and adults with cerebral palsy: a review of outcomes research. Dev Disabil Res Rev. 2013;18:84–94.
   PubMed Web of Science ®Google Scholar
• Ando N, Ueda S. Functional deterioration in adults with cerebral palsy. Clin Rehabil. 2000;14:300–306.
   PubMed Web of Science ®Google Scholar
• Furukawa A, Iwatsuki H, Nishiyana M, et al. A study on the subjective well-being of adult patients with cerebral palsy. J Phys Ther Sci. 2001;13:31–35.
   Google Scholar
• Gajdosik CG, Cicirello N. Secondary conditions of the musculoskeletal system in adolescents and adults with cerebral palsy. Phys Occup Ther Pediatr. 2001;21:49–68.
   PubMedGoogle Scholar
• Murphy KP, Molnar GE, Lankasky K. Medical and functional status of adults with cerebral palsy. Dev Med Child Neurol. 1995;37:1075–1084.
   PubMed Web of Science ®Google Scholar
• Schwartz L, Engel JM, Jensen MP. Pain in persons with cerebral palsy. Arch Phys Med Rehabil. 1999;80:1243–1246.
   PubMed Web of Science ®Google Scholar
• Turk MA. Health, mortality, and wellness issues in adults with cerebral palsy. Dev Med Child Neurol. 2009; 51(Suppl 4):24–29.
   PubMed Web of Science ®Google Scholar
• Turk MA, Geremski CA, Rosenbaum PF, et al. The health status of women with cerebral palsy. Arch Phys Med Rehabil. 1997;78:S10–S17.
   PubMed Web of Science ®Google Scholar
• van der Slot WMA, Nieuwenhuijsen C, VanDenBerg-Emons R, et al. Chronic pain, fatigue, and depressive symptoms in adults with spastic bilateral cerebral palsy. Dev Med Child Neurol. 2012;54:836–842.
   PubMed Web of Science ®Google Scholar
• Jahnsen R, Villien L, Stanghelle JK, et al. Fatigue in adults with cerebral palsy in Norway compared with the general population. Dev Med Child Neurol. 2003;45:296–303.
   PubMed Web of Science ®Google Scholar
• Jensen MP, Engel JM, Schwartz L. Coping with cerebral palsy pain: a preliminary longitudinal study. Pain Med. 2006;7:30–37.
   PubMed Web of Science ®Google Scholar
• Opheim A, Jahnsen R, Olsson E, et al. Walking function, pain, and fatigue in adults with cerebral palsy: a 7-year follow-up study. Dev Med Child Neurol. 2009;51:381–388.
   PubMed Web of Science ®Google Scholar
• Bell L, Sawyer S. Transition of care to adult services for pediatric solid-organ transplant recipients. Pediatr Clin North Am. 2010;57:593–610.
   PubMed Web of Science ®Google Scholar
• While A, Forbes A, Ullman R, et al. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30:439–452.
   PubMed Web of Science ®Google Scholar
• van der Slot WM, Nieuwenhuijsen C, van den Berg-Emons RJ, et al. 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.
   PubMed Web of Science ®Google Scholar
• Bottos M, Feliciangeli A, Sciuto L, et al. Functional status of adults with cerebral palsy and implications for treatment of children. Dev Med Child Neurol. 2001;43:516–528.
   PubMed Web of Science ®Google Scholar
• Jahnsen R, Villien L, Egeland T, et al. Locomotion skills in adults with cerebral palsy. Clin Rehabil. 2004;18:309–316.
   PubMed Web of Science ®Google Scholar
• Krakovsky G, Huth MM, Lin L, et al. Functional changes in children, adolescents, and young adults with cerebral palsy. Research in Developmental Disabilities. 2007;28:331–340.
   PubMed Web of Science ®Google Scholar
• WHO. International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001.
   Google Scholar
• Matlow A, Wright J, Zimmerman B, et al. How can the principles of complexity science be applied to improve the coodination of care for complex pediatric patients? Qual Saf Health Care. 2006;15:85–88.
   PubMedGoogle Scholar
• Palisano RJ, Rosenbaum P, Bartlett D, et al. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008;50:744–750.
   PubMed Web of Science ®Google Scholar
• Jahnsen R, Aamodt G, Rosembaum P. Gross motor function classification system used in adults with cerebral palsy: agreement of self-reported versus professional rating. Dev Med Child Neurol. 2006;48:734–738.
   PubMed Web of Science ®Google Scholar
• Behavioral Risk Factor Surveillance System Questionnaire. In: Services HaH editor. Atlanta, Georgia: Centers for Disease Control and Prevention (CDC); 2011.
   Google Scholar
• CDC. Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance System Survey Questionnaire. In: Department of Health and Human Services CfDCaP editor. Atlanta, Georgia: US; 2011.
   Google Scholar
• Keller S, Bann C, Dodd S, et al. Validity of the brief pain inventory for use in documenting the outcomes of patients with noncancer pain. Clin J Pain. 2004;20:309–318.
   PubMed Web of Science ®Google Scholar
• Michielsen HJ, De Vries J, Van Heck GL. Psychometric qualities of a brief self-rated fatigue measure: the Fatigue Assessment Scale. J Psychosom Res. 2003;54:345–352.
   PubMed Web of Science ®Google Scholar
• Zuithoff NP, Vergouwe Y, King M, et al. The Patient Health Questionnaire-9 for detection of major depressive disorder in primary care: consequences of current thresholds in a crosssectional study. BMC Fam Pract. 2010;11:98.
   PubMed Web of Science ®Google Scholar
• Wallston KA. The validity of the multidimensional health locus of control scales. J Health Psychol. 2005;10:623–631.
   PubMed Web of Science ®Google Scholar
• Ramstad K, Jahnsen R, Skjeldal OH, et al. Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years. Dev Med Child Neurol. 2011;53:1013–1018.
   PubMed Web of Science ®Google Scholar
• Livingston MH, Rosembaum PL, Russell DJ, et al. Quality of life among adolescents with cerebral palsy: what does the literature tell us? Dev Med Child Neurol. 2007;49:225–231.
   PubMed Web of Science ®Google Scholar
• Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil. 2005;86:940–945.
   PubMed Web of Science ®Google Scholar
• White-Koning M, Arnaud C, Bourdet-Loubere S, et al. Subjective quality of life in children with intellectual impairment-how can it be assessed? Dev Med Child Neurol. 2005;47:281–285.
   PubMed Web of Science ®Google Scholar
• White-Koning M, Grandjean H, Colver A, et al. Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Dev Med Child Neurol. 2008;50:618–624.
   PubMed Web of Science ®Google Scholar
• Jensen MP, Kuehn CM, Amtmann D, et al. Symptom burden in persons with spinal cord injury. Arch Phys Med Rehabil. 2007;88:638–645.
   PubMed Web of Science ®Google Scholar
• Sandstrom K, Alinder J, Oberg B. Descriptions of functioning and health and relations to a gross motor classification in adults with cerebral palsy. Disabil Rehabil. 2004;26:1023–1031.
   PubMed Web of Science ®Google Scholar
• Day SM, Wu YW, Strauss DJ, et al. Change in ambulatory ability of adolescents and young adults with cerebral palsy. Dev Med Child Neurol. 2007;49:647–653.
   PubMed Web of Science ®Google Scholar
• Jahnsen R, Villien L, Aamodt G, et al. Musculoskeletal pain in adulsts with cerebral palsy compared with the general population. J Rehabil Med. 2004;37:78–84.
   Google Scholar
• Hirsh AT, Gallegos JC, Gertz KJ, et al. Symptom burden in individuals with cerebral palsy. J Rehabil Res Dev. 2010;47:863–876.
   PubMed Web of Science ®Google Scholar
• Park MJ, Paul Mulye T, Adams SH, et al. The health status of young adults in the United States. J Adolesc Health. 2006;39:305–317.
   PubMed Web of Science ®Google Scholar
• Ferro MA, Gorter JW, Boyle MH. Trajectories of depressive symptoms during the transition to young adulthood: the role of chronic illness. J Affect Disord. 2015;174:594–601.
   PubMed Web of Science ®Google Scholar
• Young N, Rochon T, McCormick A, et al. The health and quality of life outcomes among youth and young adults with cerebral palsy. Arch Phys Med Rehabil. 2010;90:143–148.
   Google Scholar
• Opheim A, Jahnsen R, Olsson E, et al. Physical and mental components of health-related quality of life and musculoskeletal pain sites over seven years in adults with spastic cerebral palsy. J Rehabil Med. 2011;43:382–387.
   PubMed Web of Science ®Google Scholar
• King G, Willoughby C, Specht JA, et al. Social support processes and the adaptation of individuals with chronic disabilities. Qual Health Res. 2006;16:902–925.
   PubMed Web of Science ®Google Scholar
• Horsman M, Suto M, Dudgeon B, et al. Ageing with cerebral palsy: psychosocial issues. Age Ageing. 2010;39:294–299.
   PubMed Web of Science ®Google Scholar
• Parkes J, White-Koning M, Dickinson HO, et al. Psychological problems in children with cerebral palsy: a cross-sectional European study. J Child Psychol & Psychiat. 2008;49:405–413.
   PubMed Web of Science ®Google Scholar