Abstract
Nonadherence is believed to be the single greatest cause of treatment failure, resulting in substantial morbidity and mortality, much of which could have been avoided. In this chapter we review the scope of the problem of nonadherence, and discuss definitional issues including the distinctions between disease and illness; compliance, adherence, and nonadherence; and intentional and unintentional nonadherence. The multi-factorial nature of nonadherence is highlighted. Barriers inherent in the current healthcare system are then reviewed with an eye toward identifying areas where more improvement could be made.
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References
Adams CD, Dreyer ML, Dinakar C, Portnoy JM. Pediatric asthma: a look at adherence from the patient and family perspective. Curr Allergy Asthma Rep. 2004;4(6):425–32.
Adler NE, Boyce T, Chesney MA, et al. Socioeconomic status and health. The challenge of the gradient. Am Psychol. 1994;49:15–24.
Anderson BJ. Who forgot? The challenges of family responsibility for adherence in vulnerable pediatric populations. Pediatrics. 2012;129(5):e1324–25.
Ashton CM, Haidet P, Paterniti DA, Collins TC, Gordon HS, O’Malley K, et al. Racial and ethnic disparities in the use of health services: bias, preferences, or poor communication? J Gen Intern Med. 2003;18(2):146–52.
Barnes CS, Ziemer DC, Miller CD, et al. Little time for diabetes management in the primary care setting. Diabetes Educ. 2004;30:126–35.
Bender B, Wambolt FS, O’Connor SL, et al. Measurement of children’s asthma medication adherence by self report, mother report, canister weight, and doser CT. Ann Allergy Athmsa Immunol. 2000;85:416–21.
Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge: Harvard University Press; 1979.
Brown MT, Bussell JK. Medication adherence: who cares. Mayo Clin Proc. 2011;86(4):304–14.
Buchanan AL, Montepiedra G, Sirois PA, et al. Barriers to medication adherence in HIV-infected children and youth based on self- and caregiver report. Pediatrics. 2012;129(5):e1244–51.
Cassell EJ. Illness and disease. Hastings Cent Rep. 1976;6(2);27–37.
Charach A, Yeung E, Volpe T, Goodale T, dosReis S. Exploring stimulant treatment in ADHD: narratives of young adolescents and their parents. BMC Psychiatry. 2014;14:110.
Chesney M. Adherence to HAART regimens. AIDS Patient Care STDS. 2003;17(4):169–77.
De Civita M, Dobkin PL Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership. J Ped Psychol. 2004;29:157–69.
Detmar SB, Muller MJ, Wever LDV, Schornagel JH, Aaronson NK. Patient-physician communication during outpatient palliative treatment visits. JAMA. 2001;285:1351–57.
DiMatteo MR. Variations in patients’ adherence to medical recommendations: a quantitative review of 50 years of research. Med Care. 2004;42:200–9.
Dobbels F, Ruppar T, De Geest S, Decorte A., Van Damme-Lombaerts, Fine RN. Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: a systematic review. Pediatr Transplant. 2010;5:603–13.
Drotar D, Crawford P, Bonner M. Collaborative decision making and treatment adherence promotion in the management of pediatric chronic illness. Patient Intell. 2010;2:1–7.
Epstein RM, Street RL. The values and value of patient-centered care. Ann Fam Med. 2011;9:100–3.
Fox H, McManus M, Klein J, Diaz A, Elster A, Felice M, Kaplan D, Wibbelsman C, Wilson J: Adolescent Medicine training in pediatric residency programs. Pediatrics. 2010;125(1):165–72.
Gadkari AS, McHorney CA. Unintentional non-adherence to chronic prescription medications: how unintentional is it really? BMC Health Serv Res. 2012;12(1):98.
Gerrard M, Gibbons FX, Houlihan AE, Stock ML, Pomery EA. A dual-process approach to health risk decision-making: the prototype-willingness model. Dev Rev. 2008;28:29–61.
Gibbons FX. Intention, expectation, and willingness 2008. http://cancercontrol.cancer.gov/BRP/constructs/intent-expect-willingness/iew4.html. Accessed 12 Mar 2015.
Gibbons FX, Gerrard M. Health images and their effects on health behavior. In: Buunk BP, Gibbons FX, editors, Health, coping, and well-being: perspectives from social comparison theory. Mahwah: Lawrence Erlbaum Associates, Publishers; 1997. pp. 63–94.
Glasgow RM. Perceived barriers to self-management and preventive behaviors 2008. http://cancercontrol.cancer.gov/BRP/constructs/barriers/index.html. Accessed 12 Mar 2015.
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.
Halfon N, Stevens GD, Larson K, Olson LM. Duration of a well-child visit: association with content, family-centeredness, and satisfaction. Pediatrics. 2011;128:657–64. doi:10.1542/peds.2011-0586.
Haynes RB. Interventions for helping patients to follow prescriptions for medications. Cochrane Database Syst Rev. 2001;1.
Haynes RB, Taylor DW, Sackett DL. Compliance in health care. Baltimore: Johns Hopkins University Press; 1979.
Helman CG. Disease versus illness in general practice. J R Coll Gen Pract. 1981;31:548–52.
Hood KK, Peterson CM, Rohan JM, Drotar D. Association between adherence and glycemic control in pediatric type 1 diabetes: a meta-analysis. Pediatrics. 2009;124(6):e1171–79.
Horne R, Weinman J, Barber N, Elliott R, Morgan M, Cribb A. Concordance, adherence and compliance in medicine-taking. London: NCCSDO; 2005.
Kahana S, Drotar D, Frazier T. Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. J Pediatr Psychol. 2008;33:590–611.
Kaufman FR, Halvorson M, Carpenter S. Association between diabetes control and visits to a multidisciplinary pediatric diabetes clinic. Pediatrics. 1999;103:948–51.
Kazak AE. Pediatric psychosocial preventative health model (PPPHM): research, practice and collaboration in pediatric family systems medicine. Fam Syst Health. 2006;24;381–95.
Kocher R, Emanuel EJ, DeParle NAM. The affordable care act and the future of clinical medicine: the opportunities and challenges. Ann Intern Med. 2010;153:536–9.
Koh HK, Sebelius KG. Promoting prevention through the affordable care act. N Engl J Med 2010;363:1296–9.
La Greca AM, Bearman KJ. If an apple a day keeps the doctor away, why is adherence so hard? J Pediatr Psychol. 2001;26:279–82.
Laffel L, Brackett J, Ho J, Anderson BJ. Changing the process of diabetes care improves metabolic outcomes and reduces hospitalizations. Qual Manage Health Care. 1998;6:53–62.
Levinson W, Roter D. Physicians’ psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med. 1995;10:375–9.
Levinson W, Lesser CS, Epstein RM. Developing physician communication skills for patient-centered care. Health Aff. 2010;29(7):1310–18.
Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26:1–7.
Maguire P, Faulkner A, Booth K, Elliott C, Hillier V. Helping cancer patients disclose their concerns. Eur J Cancer. 1996;32A(1):78–81.
Maldonado M, Chong E, Oehl M, Balasubramanyam A. Economic impact of diabetic ketoacidosis in a multiethnic indigent population: analysis of costs based on the precipitating cause. Diabetes Care. 2003;26:1265–69.
Medical Home Initiatives for Children With Special Needs Project Advisory Committee. American academy of pediatrics. The medical home. Pediatrics. 2002;110(1 Pt 1):184–6.
Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics. 2012;129:e473–85.
Noll R, Fischer M. Commentary: health and behavior CPT codes: an opportunity to revolutionize reimbursement in pediatric psychology. J Pediatr Psychol. 2004:29;571–8.
Oliva M, Singh TP, Gauvreau K, VanderPluym CJ, Bastardi HJ, Almond CS. Impact of medication non-adherence on survival after pediatric heart transplantation in the USA. J Heart Lung Transplant. 2013;32:881–8.
Quittner AL, Modi AC, Lemanek KL, Ievers-Landis CE, Rapoff MA. Evidence-based assessment of adherence to medical treatments in pediatric psychology. J Pediatr Psychol. 2008;33:916–36.
Penza-Clyve SM, Mansell C, McQuaid EL. Why don’t children take their asthma medications? A qualitative analysis of children’s perspectives on adherence. Journal of Asthma 2004;41:189–97.
Rapoff MA. Adherence to pediatric medical regimens. 2nd ed. New York: Springer; 2010.
Rapoff MA, Barnard MU. Compliance with pediatric medical regimens. In: Cramer JA, Spilker B, editors. Patient compliance in medical practice and clinical trials. New York: Raven; 1991. pp. 73–98.
Roter DL, Stewart M, Putnam SM, Lipkin M, Stiles W, Inui TS. Communication styles of primary care physicians. JAMA. 1997;277:350–6.
Sabate, E. Adherence to long-term therapies: evidence for action. Geneva: World Health Organization; 2003.
Santer et al. Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers’ views. BMC Pediatr. 2014;14:63.
Schwartz DD, Cline VD, Hansen J, Axelrad ME, Anderson BJ. Early risk factors for nonadherence in pediatric type 1 diabetes: a review of the recent literature. Curr Diabetes Rev. 2010;6:167–83.
Schwartz DD, Cline VD, Axelrad ME, Anderson BJ. Feasibility, acceptability, and predictive validity of a psychosocial screening program for children and youth newly diagnosed with Type 1 diabetes. Diabetes Care. 2011;34:326–31.
Schwartz D, Axelrad M, Anderson B. Psychosocial risk screening of children newly diagnosed with type 1 diabetes: a training toolkit for healthcare professionals. MedEdPORTAL; 2013. www.mededportal.org/publication/9643. Accessed 12 Mar 2015.
Shemesh E. Non-adherence to medications following pediatric liver transplantation. Pediatr Transplant. 2004;8:600–5.
Shemesh E, Annunziato RA, Arnon R, Miloh T, Kerkar N. Adherence to medical recommendations and transition to adult services in pediatric transplant recipients. Curr Opin Organ Transplant. 2010;15:288–92.
Simoni JM, Montgomery A, Martin E, New M, Demas PA, Rana S. Adherence to antiretroviral therapy for pediatric HIV infection: a qualitative systematic review with recommendations for research and clinical management. Pediatrics. 2007;119:e1371–83.
Stark L. Introduction to the special issue on adherence in pediatric medical conditions. J Pediatr Psychol. 2013;38:589–94.
Street RL, O’Malley KJ, Cooper LA, Haidet P. Understanding concordance in patient-physician relationships: personal and ethnic dimensions of shared identity. Ann Fam Med. 2008;6:198–205.
Svoren B, Butler D, Levine B, Anderson B, Laffel L. Reducing acute adverse outcomes in youth with type 1 diabetes mellitus: a randomized controlled trial. Pediatrics. 2003;112:914–22.
Van Cleave J, Gortmaker SL, Perrin JM. Dynamics of obesity and chronic health conditions among children and youth. JAMA. 2010;303:623–30.
van Es SM, le Coq EM, Brownwert AI, et al. Adherence-related behavior in adolescents with asthma: results from focus group interviews. J Asthma. 1998;35:637–46.
Varni J, Burwinkle T, Lane M. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes. 2005;3:1–9.
Viswanathan M, Golin CE, Jones CD, Ashok M, Blalock S, Wines RCM, Coker-Schwimmer EJL, Grodensky CA, Rosen DL, Yuen A, Sista P, Lohr KN. Medication adherence interventions: comparative effectiveness. closing the quality gap: revisiting the state of the science. Evidence report No. 208. (Prepared by RTI International–University of North Carolina Evidence-based Practice Center under Contract No. 290-2007-10056-I.) AHRQ Publication No. 12-E010-EF. Rockville, MD: Agency for Healthcare Research and Quality. September 2012. www.effectivehealthcare.ahrq.gov/reports/final.cfm.
Winkley K, Ismail K, Landau S, Eisler I. Psychological interventions to improve glycaemic control in patients with type 1 diabetes: systematic review and meta-analysis of randomised controlled trials. BMJ. 2006;333(7558):65.
Wolpert HA, Anderson BJ. Management of diabetes: are doctors framing the benefits from the wrong perspective? BMJ. 2001;323:994–6.
Wolfsdorf J, Craig ME, Daneman D, Dunger D, Edge J, Lee W, Rosenbloom A, Sperling M, Hanas R. Diabetic ketoacidosis in children and adolescents with diabetes. Pediatr Diabetes. 2009;10:118–33.
Wroe AL, Intentional and unintentional nonadherence: a study of decision making. J behav med. 2002;25(4):355–72.
Zolnierek KBH, DiMatteo MR. Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009;47:826–34.
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Schwartz, D., Axelrad, M. (2015). Introduction: Definitions, Scope, and Impact of Nonadherence. In: Healthcare Partnerships for Pediatric Adherence. SpringerBriefs in Public Health(). Springer, Cham. https://doi.org/10.1007/978-3-319-13668-4_1
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