Abstract
Transition from pediatric to adult healthcare for adolescents and young adults with chronic lung disease can be challenging. Individuals must develop illness self-management skills, including obtaining appropriate knowledge and the ability to independently engage in self-care behaviors. Various individual factors can facilitate or impede this process. Specifically, developmental and psychosocial variables play an important role. Understanding the role of these factors in the transition to adult care, and developing best practices to address them, is critical to helping individuals with chronic lung disease, and their families, successfully navigate transition in care.
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References
Schwartz LA, Tuchman LK, Hobbie WL, Ginsberg JP. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883–95.
Blum RW, Hirsch D, Kastner TA, Quint RD, Sandler AD, Anderson SM, et al. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–6.
Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, Mcdonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016;4:CD009794.
Modi AC, Pai AL, Hommel KA, Hood KK, Cortina S, Hilliard ME, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129:e473–85.
La Greca AM, Bearman KJ. Adherence to pediatric treatment regimens. In: Handbook of pediatric psychology. 3rd ed. New York: The Guilford Press; 2003. p. 119–40.
Becker MH, Drachman RH, Kirscht JP. Predicting mothers’ compliance with pediatric medical regimens. J Pediatr. 1972;81:843–54.
Prochaska, JO, DiClemente CC. The transtheoretical approach: Crossing traditional boundaries of therapy. Homewood, Ill: Dow Jones-Irwin, 1984.
Lozano P, Houtrow A. Supporting self-management in children and adolescents with complex chronic conditions. Pediatrics. 2018;141:S233–41.
Graves MM, Roberts MC, Rapoff M, Boyer A. The efficacy of adherence interventions for chronically ill children: a meta-analytic review. J Pediatr Psychol. 2010;35:368–82.
Hommel KA, Ramsey RR, Rich KL, Ryan JL. Adherence to pediatric treatment regimens. In: Handbook of pediatric psychology. 5th ed. New York: The Guilford Press; 2017. p. 119–33.
Haynes R. Introduction. In: Haynes RB, Taylor DW, Sackett DL, editors. Compliance in health care. Baltimore: John’s Hopkins University Press; 1979.
Pai ALH, Ostendorf HM. Treatment adherence in adolescents and young adults affected by chronic illness during the health care transition from pediatric to adult health care: a literature review. Child Health Care. 2011;40:16–33.
Jones MR, Frey SM, Riekert K, Fagnano M, Halterman JS. Transition readiness for talking with providers in urban youth with asthma: associations with medication management*. J Adolesc Health. 2019;64:265–71.
Patel A, Dowell M, Giles BL. Current concepts of transition of care in cystic fibrosis. Pediatr Ann. 2017;46:e188–92.
Agarwal A, Willis D, Tang X, Bauer M, Berlinski A, Com G, et al. Transition of respiratory technology dependent patients from pediatric to adult pulmonology care. Pediatr Pulmonol. 2015;50:1294–300.
Taylor L, Tsang A, Drabble A. Transition of transplant patients with cystic fibrosis to adult care: today’s challenges. Prog Transplant. 2006;16:329–34.
Gold A, Martin K, Breckbill K, Avitzur Y, Kaufman M. Transition to adult care in pediatric solid-organ transplant: development of a practice guideline. Prog Transplant. 2015;25:131–8.
Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ - transition readiness assessment questionnaire. J Pediatr Psychol. 2011;36:160–71.
Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC, et al. The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14:415–22.
Sawicki GS, Kelemen S, Weitzman ER. Ready, set, stop: mismatch between self-care beliefs, transition readiness skills, and transition planning among adolescents, young adults, and parents. Clin Pediatr (Phila). 2014;53:1062–8.
Gilleland J, Amaral S, Mee L, Blount R. Getting ready to leave: transition readiness in adolescent kidney transplant recipients. J Pediatr Psychol. 2012;37:85–96.
Devine K, Monaghan M, Schwartz L. Transition in pediatric psychology: adolescents and young adults. In: Handbook of pediatric psychology. New York: The Guilford Press; 2017. p. 620–31.
Davis AM, Brown RF, Taylor JL, Epstein RA, McPheeters ML. Transition care for children with special health care needs. Pediatrics. 2014;134:900–8.
Masterson TL, Wildman BG, Newberry BH, Omlor GJ. Impact of age and gender on adherence to infection control guidelines and medical regimens in cystic fibrosis. Pediatr Pulmonol. 2011;46:295–301.
Carbone L, Zebrack B, Plegue M, Joshi S, Shellhaas R. Treatment adherence among adolescents with epilepsy: what really matters? Epilepsy Behav. 2013;27:59–63.
McNally K, Rohan J, Pendley JS, Delamater A, Drotar D. Executive functioning, treatment adherence, and glycemic control in children with type 1 diabetes. Diabetes Care. 2010;33:1159–62.
Irani F, Barbone JM, Beausoleil J, Gerald L. Is asthma associated with cognitive impairments? A meta-analytic review. J Clin Exp Neuropsychol. 2017;39:965–78.
Rosas-Salazar C, Apter AJ, Canino G, Celedón JC. Health literacy and asthma. J Allergy Clin Immunol. 2012;129:935–42.
Mancuso CA, Rincon M. Impact of health literacy on longitudinal asthma outcomes. J Gen Intern Med. 2006;21:813–7.
Schwengel DA, Dalesio NM, Stierer TL. Pediatric obstructive sleep apnea. Anesthesiol Clin. 2014;32:237–61.
Snow WM, Anderson JE, Jakobson LS. Neuropsychological and neurobehavioral functioning in Duchenne muscular dystrophy: a review. Neurosci Biobehav Rev. 2013;37:743–52.
Sasannejad C, Ely EW, Lahiri S. Long-term cognitive impairment after acute respiratory distress syndrome: a review of clinical impact and pathophysiological mechanisms. Crit Care. 2019;23:352.
Koltsida G, Konstantinopoulou S. Long term outcomes in chronic lung disease requiring tracheostomy and chronic mechanical ventilation. Semin Fetal Neonatal Med. 2019;24:101044.
Piasecki B, Turska-Malińska R, Matthews-Brzozowska T, Mojs E. Executive function in pediatric patients with cystic fibrosis, inflammatory bowel disease and in healthy controls. Eur Rev Med Pharmacol Sci. 2016;20:4299–304.
Wray J, Radley-Smith R. Beyond the first year after pediatric heart or heart-lung transplantation: changes in cognitive function and behaviour. Pediatr Transplant. 2005;9:170–7.
McGrady ME, Hommel KA. Medication adherence and health care utilization in pediatric chronic illness: a systematic review. Pediatrics. 2013;132:730–40.
Drotar D, Bonner MS. Influences on adherence to pediatric asthma treatment: a review of correlates and predictors. J Dev Behav Pediatr. 2009;30:574–82.
Quittner AL, Zhang J, Marynchenko M, Chopra PA, Signorovitch J, Yushkina Y, et al. Pulmonary medication adherence and health-care use in cystic fibrosis. Chest. 2014;146:142–51.
Amin R, Al-Saleh S, Narang I. Domiciliary noninvasive positive airway pressure therapy in children. Pediatr Pulmonol. 2016;51:335–48.
Killian MO. Psychosocial predictors of medication adherence in pediatric heart and lung organ transplantation. Pediatr Transplant. 2017. http://orcid.org/000.-0002-2287-9007.
Sawicki GS, Ostrenga J, Petren K, Fink AK, D'Agostino E, Strassle C, Schechter MS, Rosenfeld M. Risk factors for gaps in care during transfer from pediatric to adult cystic fibrosis programs in the united states. Ann Am Thorac Soc. 2018;15(2):234–40. https://doi.org/10.1513/AnnalsATS.201705-357OC.
Oates GR, Stepanikova I, Gamble S, Gutierrez HH, Harris WT. Adherence to airway clearance therapy in pediatric cystic fibrosis: socioeconomic factors and respiratory outcomes. Pediatr Pulmonol. 2015;50:1244–52.
Barker DH, Quittner AL. Parental depression and pancreatic enzymes adherence in children with cystic fibrosis. Pediatrics. 2016;137:e20152296.
Wood BL, Brown ES, Lehman HK, Khan DA, Lee MJ, Miller BD. The effects of caregiver depression on childhood asthma: pathways and mechanisms. Ann Allergy Asthma Immunol. 2018;121:421–7.
Modi AC, Marciel KK, Slater SK, Drotar D, Quittner AL. The influence of parental supervision on medical adherence in adolescents with cysticfibrosis: Developmental shifts from pre to late adolescence. Children’s Health Care. 2008;37(1):78–82. https://doi.org/10.1080/02739610701766925.
Duncan CL, Hogan MB, Tien KJ, Graves MM, Chorney JML, Zettler MD, et al. Efficacy of a parent-youth teamwork intervention to promote adherence in pediatric asthma. J Pediatr Psychol. 2013;38:617–28.
Gill D, Sheehan NA, Wielscher M, Shrine N, Amaral AFS, Thompson JR, et al. Age at menarche and lung function: a Mendelian randomization study. Eur J Epidemiol. 2017;32:701–10.
Sutton S, Rosenbluth D, Raghavan D, Zheng J, Jain R. Effects of puberty on cystic fibrosis related pulmonary exacerbations in women versus men. Pediatr Pulmonol. 2014;49:28–35.
Berk LE. Development through the lifespan, 6/e © 2014. Development; 2014.
Inhelder B, Piaget J. An essay on the construction of formal operational structures. In: The growth of logical thinking: from childhood to adolescence. New York: Basic Books; 1958.
DeLambo KE, Ievers-Landis CE, Drotar D, Quittner AL. Association of observed family relationship quality and problem-solving skills with treatment adherence in older children and adolescents with cystic fibrosis. J Pediatr Psychol. 2004;29:343–53.
Quittner AL, Eakin MN, Alpern AN, Ridge AK, McLean KA, Bilderback A, et al. Clustered randomized controlled trial of a clinic-based problem-solving intervention to improve adherence in adolescents with cystic fibrosis. J Cyst Fibros. 2019;18:879–85.
Dziuban EJ, Saab-Abazeed L, Chaudhry SR, Streetman DS, Nasr SZ. Identifying barriers to treatment adherence and related attitudinal patterns in adolescents with cystic fibrosis. Pediatr Pulmonol. 2010;45:450–8.
Mulvaney SA, Ho YX, Cala CM, Chen Q, Nian H, Patterson BL, et al. Assessing adolescent asthma symptoms and adherence using mobile phones. J Med Internet Res. 2013;15:e141.
Bishay LC, Sawicki GS. Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis. Adolesc Health Med Ther. 2016;7:117–24.
Erikson EH. Identity, youth and crisis. New York: WW Norton Company, 1968.
Mosnaim G, Li H, Martin M, Richardson DJ, Belice PJ, Avery E, et al. The impact of peer support and mp3 messaging on adherence to inhaled corticosteroids in minority adolescents with asthma: a randomized, controlled trial. J Allergy Clin Immunol Pract. 2013;1:485–93.
Janicke DM, Gray WN, Kahhan NA, Follansbee Junger KW, Marciel KK, Storch EA, et al. Brief report: the association between peer victimization, prosocial support, and treatment adherence in children and adolescents with inflammatory bowel disease. J Pediatr Psychol. 2009;34:769–73.
Helms SW, Dellon EP, Prinstein MJ. Friendship quality and health-related outcomes among adolescents with cystic fibrosis. J Pediatr Psychol. 2015;40:349–58.
Kostakou K, Giannakopoulos G, Diareme S, Tzavara C, Doudounakis S, Christogiorgos S, et al. Psychosocial distress and functioning of Greek youth with cystic fibrosis: a cross-sectional study. Biopsychosoc Med. 2014;8:13.
Baker SE, Niec LN, Meade J. A comparison of friendship quality and social functioning among children with perinatally acquired HIV, children with persistent asthma, and healthy children of HIV-positive mothers. J Pediatr Psychol. 2012;37:580–90.
Platt B, Kadosh KC, Lau JYF. The role of peer rejection in adolescent depression. Depress Anxiety. 2013;30:809–21.
Hilliard ME, Eakin MN, Borrelli B, Green A, Riekert KA. Medication beliefs mediate between depressive symptoms and medication adherence in cystic fibrosis. Health Psychol. 2015;34:496–504.
McCormick King ML, Mee LL, Gutiérrez-Colina AM, Eaton CK, Lee JL, Blount RL. Emotional functioning, barriers, and medication adherence in pediatric transplant recipients. J Pediatr Psychol. 2014;39:283–93.
Marum G, Clench-Aas J, Nes RB, Raanaas RK. The relationship between negative life events, psychological distress and life satisfaction: a population-based study. Qual Life Res. 2014;23:601–11.
Wright RJ, Cohen RT, Cohen S. The impact of stress on the development and expression of atopy. Curr Opin Allergy Clin Immunol. 2005;5:23–9.
McQuaid EL, Fritz GK, Nassau JH, Lilly MK, Mansell A, Klein RB. Stress and airway resistance in children with asthma. J Psychosom Res. 2000;49:239–45.
Pinquart M, Shen Y. Depressive symptoms in children and adolescents with chronic physical illness: an updated meta-analysis. J Pediatr Psychol. 2011;36:375–84.
Pinquart M, Shen Y. Anxiety in children and adolescents with chronic physical illnesses: a meta-analysis. Acta Paediatrica Int J Paediatr. 2011;100:1069–76.
Quittner AL, Abbott J, Georgiopoulos AM, Goldbeck L, Smith B, Hempstead SE, et al. International committee on mental health in cystic fibrosis: Cystic Fibrosis Foundation and European cystic fibrosis society consensus statements for screening and treating depression and anxiety. Thorax. 2016;71:26–34.
Lu Y, Mak KK, van Bever HPS, Ng TP, Mak A, Ho RCM. Prevalence of anxiety and depressive symptoms in adolescents with asthma: a meta-analysis and meta-regression. Pediatr Allergy Immunol. 2012;23:707–15.
Lumeng JC, Warschausky SA, Nelson VS, Augenstein K. The quality of life of ventilator-assisted children. Pediatr Rehabil. 2001;4:21–7.
Wray J, Radley-Smith R. Depression in pediatric patients before and 1 year after heart or heart-lung transplantation. J Heart Lung Transplant. 2004;23:1103–10.
Richardson LP, Lozano P, Russo J, McCauley E, Bush T, Katon W. Asthma symptom burden: relationship to asthma severity and anxiety and depression symptoms. Pediatrics. 2006;118:1042–51.
Wu YP, Aylward BS, Steele RG. Associations between internalizing symptoms and trajectories of medication adherence among pediatric renal and liver transplant recipients. J Pediatr Psychol. 2010;35:1016–27.
White T, Miller J, Smith GL, McMahon WM. Adherence and psychopathology in children and adolescents with cystic fibrosis. Eur Child Adolesc Psychiatry. 2009;18:96–104.
Sheehan J, Massie J, Hay M, Jaffe A, Glazner J, Armstrong D, et al. The natural history and predictors of persistent problem behaviours in cystic fibrosis: a multicentre, prospective study. Arch Dis Child. 2012;97:625–31.
McQuaid EL, Kopel SJ, Nassau JH. Behavioral adjustment in children with asthma: a meta-analysis. J Dev Behav Pediatr. 2001;22:430–9.
Goodwin RD, Robinson M, Sly PD, McKeague IW, Susser ES, Zubrick SR, et al. Severity and persistence of asthma and mental health: a birth cohort study. Psychol Med. 2013;43:1313–22.
Malee K, Williams P, Montepiedra G, McCabe M, Nichols S, Sirois PA, et al. Medication adherence in children and adolescents with HIV infection: associations with behavioral impairment. AIDS Patient Care STDS. 2011;25:191–200.
Modi AC, Quittner AL. Barriers to treatment adherence for children with cystic fibrosis and asthma: what gets in the way? J Pediatr Psychol. 2006;31:846–58.
Butcher JL, Nasr SZ. Direct observation of respiratory treatments in cystic fibrosis: parent-child interactions relate to medical regimen adherence. J Pediatr Psychol. 2015;40:8–17.
Ha Dinh TT, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Database System Rev Implement Rep. 2016;14:210–47.
Mosnaim GS, Pappalardo AA, Resnick SE, Codispoti CD, Bandi S, Nackers L, et al. Behavioral interventions to improve asthma outcomes for adolescents: a systematic review. J Allergy Clin Immunol Pract. 2016;4:130–41.
Venetis MK, Chernichky-Karcher S, Gettings PE. Disclosing mental illness information to a friend: exploring how the disclosure decision-making model informs strategy selection. Health Commun. 2018;33:653–63.
Grootens-Wiegers P, Hein IM, van den Broek JM, de Vries MC. Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatr. 2017;17:120.
Klein DA, Paradise SL, Landis CA. Screening and counseling adolescents and young adults: a framework for comprehensive care. Am Fam Physician. 2020;101:147–58.
Christophersen ER, VanScoyoc SM. Treatments that work with children: empirically supported strategies for managing childhood problems. 2nd ed. Washington, DC: American Psychological Association; 2013.
Strawn JR, Dobson ET, Giles LL. Primary pediatric care psychopharmacology: focus on medications for ADHD, depression, and anxiety. Curr Probl Pediatr Adolesc Health Care. 2017;47:3–14.
Aujoulat I, Dechêne S, Lahaye M. Non-disease specific health promotion interventions for chronically ill adolescents in medical settings: a systematic review. Front Public Health. 2018;6:301.
Quittner AL, Espelage DL, Ievers-Landis C, Drotar D. Measuring adherence to medical treatments in childhood chronic illness: considering multiple methods and sources of information. J Clin Psychol Med Settings. 2000;7:41–54.
Quittner AL, Pedreira PB, Bernstein R, McLean LA, Nicolais CJ, Saez-Flores E, Riekert KA. Development of the adherence barriers questionnaire-cystic fibrosis (ABQ-CF): frequently endorsed barriers from openended interviews. Pediatr Pulmonol. 2016;51:465.
Quittner AL, Abbott J, Hussain S, Ong T, Uluer A, Hempstead S, et al. Integration of mental health screening and treatment into cystic fibrosis clinics: evaluation of initial implementation in 84 programs across the United States. Pediatr Pulmonol. 2020;55:2995–3004.
American Diabetes Association. Standards of Medical Care in Diabetes, 2018. Diabetes Care 2018;41(Suppl. 1).
Rufo PA, Denson LA, Sylvester FA, Szigethy E, Sathya P, Lu Y, et al. Health supervision in the management of children and adolescents with IBD: NASPGHAN recommendations. J Pediatr Gastroenterol Nutr. 2012;55:93–108.
Zuckerbrot RA, Cheung A, Jensen PS, REK S, Laraque D. Guidelines for adolescent depression in primary care (GLAD-PC): part I. Practice preparation, identification, assessment, and initial management. Pediatrics. 2018;141:e20174081.
Pai ALH, McGrady M. Systematic review and meta-analysis of psychological interventions to promote treatment adherence in children, adolescents, and young adults with chronic illness. J Pediatr Psychol. 2014;39:918–31.
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Butcher, J.L. (2021). Developmental and Psychosocial Challenges for Self-Management and Maintaining Adherence to Chronic Therapies. In: Brown, C.D., Crowley, E. (eds) Transitioning Care from Pediatric to Adult Pulmonology. Respiratory Medicine. Humana, Cham. https://doi.org/10.1007/978-3-030-68688-8_4
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