Abstract
Problems with adherence to medical treatments and medical recommendations are a well-recognized and costly concern in pediatric healthcare. Although the concern is well-recognized, there continues to considerable variability in how adherence is defined and measured in children and adolescents with a chronic disease. In this chapter, we review (1) the definition of adherence versus compliance; (2) describe the different types of adherence and nonadherence; and (3) summarize rates of adherence in different pediatric chronic disease.
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References
Adams, C. D., Dreyer, M. L., Dinakar, C., & Portnoy, J. M. (2004). Pediatric asthma: A look at adherence from the patient and family perspective. Current Allergy & Asthma Reports, 4, 425–432. https://doi.org/10.1007/s11882-004-0007-3
Arcoleo, K. J., McGovern, C., Kaur, K., Halterman, J. S., Mammen, J., Crean, H., Rastogi, D., & Feldman, J. M. (2019). Longitudinal patterns of Mexican and Puerto Rican Children's asthma controller medication adherence and acute healthcare use. Annals of the American Thoracic Society, 16(6), 715–723. https://doi.org/10.1513/AnnalsATS.201807-462OC
Brodtkorb, E., Samsonsen, C., Sund, J. K., Bråthen, G., Helde, G., & Reimers, A. (2016). Treatment non-adherence in pseudo-refractory epilepsy. Epilepsy Research, 122, 1–6. https://doi.org/10.1016/j.eplepsyres.2016.02.001
Burkhart, P. V., & Sabate, E. (2003). Adherence to long-term therapies: Evidence for action. Journal of Nursing Scholarship, 35(3), 207.
Cain, C. J., Meisman, A. R., Drucker, K., Isaac, E. I., Verma, T., Griffin, J., & Rohan, J. M. (2020). When multiple objective measures of medication adherence indicate incongruent adherence results: An example with pediatric cancer. International Journal of Environmental Research and Public Health, 17(6), 1956. https://doi.org/10.3390/ijerph17061956
Cheen, M. H. H., Tan, Y. Z., Oh, L. F., Wee, H. L., & Thumboo, J. (2019). Prevalence of and factors associated with primary medication non-adherence in chronic disease: A systematic review and meta-analysis. International Journal of Clinical Practice, 73(6), e13350. https://doi.org/10.1111/ijcp.13350
Creary, S., Chisolm, D., Stanek, J., Neville, K., Garg, U., Hankins, J. S., & O’Brien, S. H. (2020). Measuring hydroxyurea adherence by pharmacy and laboratory data compared with video observation in children with sickle cell disease. Pediatric Blood & Cancer, 67(8), e28250. https://doi.org/10.1002/pbc.28250
Deaton, A. V. (1985). Adaptive noncompliance in pediatric asthma: The parent as expert. Journal of Pediatric Psychology, 10(1), 1–14. https://doi.org/10.1093/jpepsy/10.1.1
Dew, M. A., Dabbs, A. D., Myaskovsky, L., Shyu, S., Shellmer, D. A., Di Martini, A. F., et al. (2009). Meta-analysis of medical regimen adherence outcomes in pediatric solid organ transplantation. Transplantation, 88(5), 736–746. https://doi.org/10.1097/TP.0b013e3181b2a0e0
DiMatteo, M. R. (2004). Variations in patients' adherence to medical recommendations: A quantitative review of 50 years of research. Medical Care, 42(3), 200–209. https://doi.org/10.1097/01.mlr.0000114908.90348.f9
DiMatteo, M. R., Giordani, P. J., Lepper, H. S., & Croghan, T. W. (2002). Patient adherence and medical treatment outcomes: A meta-analysis. Medical Care, 40(9), 794–811. https://doi.org/10.1097/01.MLR.0000024612.61915.2D
Dracup, K. A., & Meleis, A. I. (1982). Compliance: An interactionist approach. Nursing Research, 31(1), 31–36.
Driscoll, K. A., Johnson, S. B., Tang, Y., Yang, F., Deeb, L. C., & Silverstein, J. H. (2011). Does blood glucose monitoring increase prior to clinic visits in children with type 1 diabetes? Diabetes Care, 34(10), 2170–2173. https://doi.org/10.2337/dc11-0388
Driscoll, K. A., Wang, Y., Bennett Johnson, S., Lynch, R., Stephens, H., Willbur, K., et al. (2016). White coat adherence in pediatric patients with type 1 diabetes who use insulin pumps. Journal of Diabetes Science & Technology, 10(3), 724–729. https://doi.org/10.1177/1932296815623568
Driscoll, K. A., Wang, Y., Johnson, S. B., Gill, E., Wright, N., & Deeb, L. C. (2017). White coat adherence occurs in adolescents with type 1 diabetes receiving intervention to improve insulin pump adherence behaviors. Journal of Diabetes Science & Technology, 11(3), 455–460. https://doi.org/10.1177/1932296816672691
Fredericks, E. M., Magee, J. C., Opipari-Arrigan, L., Shieck, V., Well, A., & Lopez, M. J. (2008). Adherence and health-related quality of life in adolescent liver transplant recipients. Pediatric Transplantation, 12(3), 289–299. https://doi.org/10.1111/j.1399-3046.2008.00901.x
Fogarty, H., Gaul, A., Syed, S., Aleksejenko, N., Geoghegan, R., Conroy, H., et al. (2022). Adherence to hydroxyurea, health-related quality of life domains and attitudes towards a smartphone app among Irish adolescents and young adults with sickle cell disease. Irish Journal of Medical Science, 191(2), 809–816. https://doi.org/10.1007/s11845-021-02588-1
Haynes, R. B., Taylor, D. W., & Sackett, D. L. (1979). Compliance in healthcare. Johns Hopkins University Press.
Heath, K. V., Singer, J., O’Shaughnessy, M. V., Montaner, J. S. G., & Hogg, R. S. (2002). Intentional nonadherence due to adverse symptoms associated with antiretroviral therapy. Journal of Acquired Immune Deficiency Syndromes, 31(2), 211–217. https://doi.org/10.1097/00126334-200210010-00012
Hodges, J. R., Phillips, S. M., Norell, S., Nwosu, C., Khan, H., Luo, L., et al. (2020). Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: A qualitative study. Blood Advances, 4(18), 4463–4473. https://doi.org/10.1182/bloodadvances.2020001701
Hommel, K. A., McGrady, M. E., Peugh, J., Zacur, G., Loreaux, K., Saeed, S., et al. (2017). Longitudinal patterns of medication nonadherence and associated health care costs. Inflammatory Bowel Diseases, 23(9), 1577–1583. https://doi.org/10.1097/MIB.0000000000001165
Hommel, K. A., Rausch, J., Towner, E. K., Schall, J., Maqbool, A., Mascarenhas, M., & Stallings, V. (2019). Adherence to nutritional supplementation in cystic fibrosis. Journal of Pediatric Nursing, 47, 18–22. https://doi.org/10.1016/j.pedn.2019.04.011
Horne, R., Weinman, J., Barber, N., Elliott, R., Morgan, M., Cribb, A., & Kellar, I. (2005). Concordance, adherence and compliance in medicine – Taking. Report for the National Co-ordinating Centre for NHS Service Delivery and Organization R&D. Retrieved from https://www.ahpo.net/assets/NCCSDO%20Compliance%202005.pdf
Jónasson, G., Carlsen, K.-H., & Mowinckel, P. (2000). Asthma drug adherence in a long term clinical trial. Archives of Disease in Childhood, 83(4), 330–333. https://doi.org/10.1136/adc.83.4.330
Keemink, Y. S., Klok, T., & Brand, P. L. (2015). Long-term adherence to daily controller medication in children with asthma: The role of outpatient clinic visits. Pediatric Pulmonology, 50(11), 1060–1064. https://doi.org/10.1002/ppul.23138
King, P. S., Berg, C. A., Butner, J., Butler, J. M., & Wiebe, D. J. (2014). Longitudinal trajectories of parental involvement in type 1 diabetes and adolescents' adherence. Health Psychology, 33(5), 424–432. https://doi.org/10.1037/a0032804
Klok, T., Kaptein, A. A., Duiverman, E. J., & Brand, P. L. (2015). Long-term adherence to inhaled corticosteroids in children with asthma: Observational study. Respiratory Medicine, 109(9), 1114–1119. https://doi.org/10.1016/j.rmed.2015.07.016
Konstantinou, P., Kassianos, A. P., Georgiou, G., Panayides, A., Papageorgiou, A., Almas, I., et al. (2020). Barriers, facilitators, and interventions for medication adherence across chronic conditions with the highest non-adherence rates: A scoping review with recommendations for intervention development. Translational Behavioral Medicine, 10(6), 1390–1398. https://doi.org/10.1093/tbm/ibaa118
Kovacs, M., Goldsten, D., Obrosky, D. S., & Iyengar, S. (1992). Prevalence and predictors of pervasive noncompliance with medical treatment among youths with insulin-dependent diabetes mellitus. Journal of the American Academy of Child and Adolescent Psychiatry, 31(6), 1112–1119. https://doi.org/10.1097/00004583-199211000-00020
Kvarnström, K., Airaksinen, M., & Liira, H. (2018). Barriers and facilitators to medication adherence: A qualitative study with general practitioners. British Medical Journal Open Access, 8(1), e015332. https://doi.org/10.1136/bmjopen-2016-015332
Lee, Y. K., Ah, Y. M., Choi, Y. J., Cho, Y. S., Kim, K. J., & Lee, J. Y. (2016). Antiepileptic drug adherence and persistence in children with epilepsy attending a large tertiary care children's hospital. Epileptic Disorders, 18(4), 408–417. https://doi.org/10.1684/epd.2016.0871
Leggett, C., Giles, L., Anderson, J. J. A., Doogue, M., Couper, J., & Pena, A. S. (2019). Adherence to metformin is reduced during school holidays and weekends in children with type 1 diabetes participating in a randomized controlled trial. Archives of Disease in Childhood, 104(9), 890–894. https://doi.org/10.1136/archdischild-2018-316303
Lehane, E., & McCarthy, G. (2007). Intentional and unintentional medication non-adherence: A comprehensive framework for clinical research and practice? A discussion paper. International Journal of Nursing Studies, 44(8), 1468–1477. https://doi.org/10.1016/j.ijnurstu.2006.07.010
Lutfey, K. E., & Wishner, W. J. (1999). Beyond "compliance" is "adherence": Improving the prospect of diabetes care. Diabetes Care, 22(4), 635–6399. https://doi.org/10.2337/diacare.22.4.635
Mancini, J., Simeoni, M. C., Parola, N., Clement, A., Vey, N., Sirvent, N., et al. (2012). Adherence to leukemia maintenance therapy: A comparative study among children, adolescents, and adults. Pediatric Hematology & Oncology, 29(5), 428–439. https://doi.org/10.3109/08880018.2012.693150
McConville, A., Noser, A. E., Clements, M. A., & Patton, S. R. (2020). Mealtime insulin BOLUS score increases prior to clinic visits in youth with type 1 diabetes. BMJ Open Diabetes Research & Care, 8(1), e001348. https://doi.org/10.1136/bmjdrc-2020-001348
McGrady, M. E., & Hommel, K. A. (2013). Medication adherence and health care utilization in pediatric chronic illness: A systematic review. Pediatrics, 132(4), 730–740. https://doi.org/10.1542/peds.20131451
McGrady, M. E., & Pai, A. (2019). A systematic review of rates, outcomes, and predictors of medication non-adherence among adolescents and young adults with cancer. Journal of Adolescent and Young Adult Oncology, 8(5), 485–494. https://doi.org/10.1089/jayao.2018.0160
Modi, A. C., Ingerski, L. M., Rausch, J. R., Glauser, T. A., & Drotar, D. (2012). White coat adherence over the first year of therapy in pediatric epilepsy. Journal of Pediatrics, 161(4), 695–699.e1. https://doi.org/10.1016/j.jpeds.2012.03.059
Modi, A. C., Morita, D. A., & Glauser, T. A. (2008). One-month adherence in children with new-onset epilepsy: White-coat compliance does not occur. Pediatrics, 121(4), e961–e966. https://doi.org/10.1542/peds.2007-1690
Morton, R. W., Everard, M. L., & Elphick, H. E. (2014). Adherence in childhood asthma: The elephant in the room. Archives of Disease in Childhood, 99(10), 949–953. https://doi.org/10.1136/archdischild-2014-306243
Narayanan, S., Mainz, J. G., Gala, S., Tabori, H., & Grossoehme, D. (2017). Adherence to therapies in cystic fibrosis: A targeted literature review. Expert Review of Respiratory Medicine, 11(2), 129–145. https://doi.org/10.1080/17476348.2017.1280399
Niechciał, E., Acerini, C. L., Chiesa, S. T., Stevens, T., Dalton, R. N., Daneman, D., et al. (2020). Medication adherence during adjunct therapy with statins and ACE inhibitors in adolescents with type 1 diabetes. Diabetes Care, 43(5), 1070–1076. https://doi.org/10.2337/dc19-0884
Osterberg, L., & Blaschke, T. (2005). Adherence to medication. New England Journal of Medicine, 353(5), 487–497. https://doi.org/10.1056/NEJMra050100
Pedoto, D., Troncone, R., Massitti, M., Greco, L., & Auricchio, R. (2020). Adherence to gluten-free diet in coeliac paediatric patients assessed through a questionnaire positively influences growth and quality of life. Nutrients, 12(12), 3802. https://doi.org/10.3390/nu12123802
Psihogios, A. M., Schwartz, L. A., Ewing, K. B., Czerniecki, B., Kersun, L. S., Pai, A., et al. (2020). Adherence to multiple treatment recommendations in adolescents and young adults with cancer: A mixed methods, multi-informant investigation. Journal of Adolescent and Young Adult Oncology, 9(6), 651–661. https://doi.org/10.1089/jayao.2020.0013
Quittner, A. L., Modi, A. C., Lemanek, K. L., Ievers-Landis, C. E., & Rapoff, M. A. (2008). Evidence-based assessment of adherence to medical treatments in pediatric psychology. Journal of Pediatric Psychology, 33(9), 916–36; 937–938. https://doi.org/10.1093/jpepsy/jsm064
Rand, C. S. (1993). Measuring adherence with therapy for chronic diseases: Implications for the treatment of heterozygous familial hypercholesterolemia. American Journal of Cardiology, 72(10), 68D–74D. https://doi.org/10.1016/0002-9149(93)90014-4
Rapoff, M. A., & Barnard, M. U. (1991). Compliance with pediatric medical regimens. In J. A. Cramer & B. Spilker (Eds.), Patient compliance in medical practice and clinical trials. Raven Press.
Rouzé, H., Viprey, M., Allemann, S., Dima, A. L., Caillet, P., Denis, A., et al. (2019). Adherence to long-term therapies in cystic fibrosis: A French cross-sectional study linking prescribing, dispensing, and hospitalization data. Patient Preference and Adherence, 13, 1497–1510. https://doi.org/10.2147/PPA.S211769
Sanz, E. J. (2003). Concordance and children’s use of medicines. British Medical Journal, 327(7419), 858–860. https://doi.org/10.1136/bmj.327.7419.858
Sbravati, F., Pagano, S., Retetangos, C., Spisni, E., Bolasco, G., Labriola, F., et al. (2020). Adherence to gluten-free diet in a celiac pediatric population referred to the general pediatrician after remission. Journal of Pediatric Gastroenterology and Nutrition, 71(1), 78–82. https://doi.org/10.1097/MPG.0000000000002676
Schober, E., Wagner, G., Berger, G., Gerber, D., Mengl, M., Sonnenstatter, S., et al. (2011). Prevalence of intentional under- and overdosing of insulin in children and adolescents with type 1 diabetes. Pediatric Diabetes, 12(7), 627–631. https://doi.org/10.1111/j.1399-5448.2011.00759.x
Smith, A. W., Mara, C. A., & Modi, A. C. (2018). Adherence to antiepileptic drugs in adolescents with epilepsy. Epilepsy & Behavior, 80, 307–311. https://doi.org/10.1016/j.yebeh.2017.12.013
Sokol, M. C., McGuigan, K. A., Verbrugge, R. R., & Epstein, R. S. (2005). Impact of medication adherence on hospitalization risk and healthcare cost. Medical Care, 43(6), 521–530.
Tang, F., Zhu, G., Jiao, Z., Ma, C., & Wang, B. (2013). Self-reported adherence in patients with epilepsy who missed their medications and reasons for nonadherence in China. Epilepsy and Behavior, 27(1), 85–89. https://doi.org/10.1016/j.yebeh.2012.12.022
Tebbi, C. K., Cumings, K. M., Kevon, M. A., Smith, L., Richards, M., & Mallon, J. (1986). Compliance of pediatric and adolescent cancer patients. Cancer, 58(5), 1179–1184. https://doi.org/10.1002/1097-0142(19860901)58:5<1179::aid-cncr2820580534>3.0.co;2-e
Tibble, H., Lay-Flurrie, J., Sheikh, A., Horne, R., Mizani, M. A., Tsanas, A., et al. (2020). Linkage of primary care prescribing records and pharmacy dispensing records in the Salford lung study: Application in asthma. BMC Medical Research Methodology, 20(1), 303. https://doi.org/10.1186/s12874-020-01184-8
Thomson, K. E., Modi, A. C., Glauser, T. A., Rausch, J. R., & Steve White, H. (2017). The impact of nonadherence to antiseizure drugs on seizure outcomes in an animal model of epilepsy. Epilepsia, 58(6), 1054–1062. https://doi.org/10.1111/epi.13742
Urquhart, J. (1994). Role of patient compliance in clinical pharmacokinetics: A review of recent research. Clinical Pharmacokinetics, 27(3), 202–215. https://doi.org/10.2165/00003088-199427030-00004
Urquhart, J., & De Klerk, E. (1998). Contending paradigms for the interpretation of data on patient compliance with therapeutic drug regimens. Statistics in Medicine, 17(3), 251–267. https://doi.org/10.1002/(sici)1097-0258(19980215)17:3<251::aid-sim762>3.0.co;2-a
Vandereycken, W., & Meermann. (1988). Chronic illness behavior and noncompliance with treatments: Pathways to an interactional approach. Psychotherapy and Psychosomatics, 50(4), 182–191. https://doi.org/10.1159/000288119
Vrijens, B., De Geest, S., Hughes, D. A., Przemyslaw, K., Demonceau, J., Ruppar, T., et al. (2012). A new taxonomy for describing and defining adherence to medications. British Journal of Clinical Pharmacology, 73(5), 691–705. https://doi.org/10.1111/j.1365-2125.2012.04167.x
World Health Organization. (2003). Adherence to long-term therapies: Evidence for action. Switzerland.
Wu, Y. P., Stenehjem, D. D., Linder, L. A., Yu, B., Parsons, B. G., Mooney, R., & Fluchel, M. N. (2018). Adherence to oral medications during maintenance therapy among children and adolescents with acute lymphoblastic leukemia: A medication refill analysis. Journal of Pediatric Oncology Nurses, 35(2), 86–93. https://doi.org/10.1177/1043454217741877
Yawn, B. P., Rank, M. A., Cabana, M. D., Wollan, P. C., & Juhn, Y. J. (2016). Adherence to asthma guidelines in children, tweens, and adults in primary care settings: A practice-based network assessment. Mayo Clinic Proceedings, 91(4), 411–421. https://doi.org/10.1016/j.mayocp.2016.01.010
Supplemental Reference List for Table 1.1
Adriano, L. S., de França Fonteles, M. M., de Fátima Menezes Azevedo, M., Beserra, M. P., & Romero, N. R. (2017). Medication adherence in patients with juvenile idiopathic arthritis. Revista Brasileira de Reumatologia, 57(1), 23–29. https://doi.org/10.1016/j.rbre.2016.05.004
Alberdi-Saugstrup, M., Nielsen, S., Mathiessen, P., Nielsen, C. H., & Müller, K. (2017). Low pretreatment levels of myeloid-related protein-8/14 and C-reactive protein predict poor adherence to treatment with tumor necrosis factor inhibitors in juvenile idiopathic arthritis. Clinical Rheumatology, 36(1), 67–75. https://doi.org/10.1007/s10067-016-3375-x
Alsous, M., Abu Farha, R., Alefishat, E., Al Omar, S., Momani, D., Gharabli, A., et al. (2017). Adherence to 6-Mercaptopurine in children and adolescents with acute lymphoblastic leukemia. PLoS One, 12(9), e0183119. https://doi.org/10.1371/journal.pone.0183119
Alsous, M., Hamdan, I., Saleh, M., McElnay, J., Horne, R., & Masri, A. (2018). Predictors of nonadherence in children and adolescents with epilepsy: A multimethod assessment approach. Epilepsy & Behavior, 85, 205–211. https://doi.org/10.1016/j.yebeh.2018.06.022
Alsous, M. M., Hawwa, A. F., Imrie, C., Szabo, A., Alefishat, E., Farha, R. A., et al. (2020). Adherence to azathioprine/6-mercaptopurine in children and adolescents with inflammatory bowel diseases: A multimethod study. Canadian Journal of Gastroenterology & Hepatology, 9562192. https://doi.org/10.1155/2020/9562192
Anders, D. G., Tang, F., Ledneva, T., Caggana, M., Green, N. S., Wang, Y., & Sturman, L. S. (2016). Hydroxyurea use in young children with sickle cell anemia in New York state. American Journal of Preventative Medicine, 51(1 Suppl 1), S31–S38. https://doi.org/10.1016/j.amepre.2016.01.001
Aylward, B. S., Rausch, J. R., & Modi, A. C. (2015). An examination of 1-year adherence and persistence rates to antiepileptic medication in children with newly diagnosed epilepsy. Journal of Pediatric Psychology, 40(1), 66–74. https://doi.org/10.1093/jpepsy/jsu010
Badawy, S. M., Thompson, A. A., Lai, J. S., Penedo, F. J., Rychlik, K., & Liem, R. I. (2017). Adherence to hydroxyurea, health-related quality of life domains, and patients' perceptions of sickle cell disease and hydroxyurea: A cross-sectional study in adolescents and young adults. Health and Quality of Life Outcomes, 15(1), 136. https://doi.org/10.1186/s12955-017-0713-x
Barker, D. H., & Quittner, A. L. (2016). Parental depression and pancreatic enzymes adherence in children with cystic fibrosis. Pediatrics, 137(2), e20152296. https://doi.org/10.1542/peds.2015-2296
Basharat, S., Jabeen, U., Zeeshan, F., Bano, I., Bari, A., & Rathore, A. W. (2018). Adherence to asthma treatment and their association with asthma control in children. JPMA. Journal of the Pakistan Medical Association, 68(5), 725–728.
Berntorp, E. (2009). Joint outcomes in patients with haemophilia: The importance of adherence to preventive regimens. Haemophilia, 15(6), 1219–1227. https://doi.org/10.1111/j.1365-2516.2009.02077.x
Bigelow, J., Singh, V., & Singh, M. (2013). Medication adherence in patients with epilepsy after a single neurologist visit in rural India. Epilepsy & Behavior, 29(2), 412–415. https://doi.org/10.1016/j.yebeh.2013.08.034
Biru, M., Jerene, D., Lundqvist, P., Molla, M., Abebe, W., & Hallström, I. (2017). Caregiver-reported antiretroviral therapy non-adherence during the first week and after a month of treatment initiation among children diagnosed with HIV in Ethiopia. AIDS Care, 29(4), 436–440. https://doi.org/10.1080/09540121.2016.1257098
Bodnár, R., Mészáros, Á., Oláh, M., & Ágh, T. (2016). Inhaled antibiotics for the treatment of chronic Pseudomonas aeruginosa infection in cystic fibrosis patients: Challenges to treatment adherence and strategies to improve outcomes. Patient Preference and Adherence, 10, 183–193. https://doi.org/10.2147/PPA.S53653
Borschuk, A. P., Filigno, S. S., Opipari-Arrigan, L., Peugh, J., & Stark, L. J. (2019). Psychological predictors of nutritional adherence in adolescents with cystic fibrosis. Clinical Nutrition ESPEN, 33, 143–147. https://doi.org/10.1016/j.clnesp.2019.06.004
Bugni, V. M., Ozaki, L. S., Okamoto, K. Y., Barbosa, C. M., Hilário, M. O., Len, C. A., & Terreri, M. T. (2012). Factors associated with adherence to treatment in children and adolescents with chronic rheumatic diseases. Jornal de Pediatria, 88(6), 483–488. https://doi.org/10.2223/JPED.2227
Burra, P., Germani, G., Gnoato, F., Lazzaro, S., Russo, F., Umberto, C., & Senzolo, M. (2011). Adherence in liver transplant recipients. Liver Transplation, 17(7), 760–770. https://doi.org/10.1002/lt.22294
Campbell, D. J., Brown, F. G., Craig, J. C., Gallagher, M. P., Johnson, D. W., Kirkland, G. S., et al. (2016). Assessment of current practice and barriers to antimicrobial prophylaxis in peritoneal dialysis patients. Nephrology, Dialysis, Transplantation, 31(4), 619–627. https://doi.org/10.1093/ndt/gfv115
Cooper, J., Chisolm, D., & McLeod, D. J. (2017). Sociodemographic characteristics, health literacy, and care compliance in families with spina bifida. Global. Pediatric Health, 4, 2333794X17745765. https://doi.org/10.1177/2333794X17745765
Cushman, G. K., Rich, K. L., Rea, K. E., Quast, L. F., Stolz, M. G., Gutierrez-Colina, A. M., et al. (2020). Caregivers' barriers to facilitating medication adherence in adolescents/young adults with solid organ transplants: Measure development and validation. Journal of Pediatric Psychology, 45(5), 498–508. https://doi.org/10.1093/jpepsy/jsaa023
Czaja-Bulsa, G., & Bulsa, M. (2018). Adherence to gluten-free diet in children with celiac disease. Nutrients, 10(10), 1424. https://doi.org/10.3390/nu10101424
Danziger-Isakov, L., Frazier, T. W., Worley, S., Williams, N., Shellmer, D., Dharnidharka, V. R., et al. (2016). Perceived barriers to medication adherence in pediatric and adolescent solid organ transplantation. Pediatric Transplantation, 20(2), 307–315. https://doi.org/10.1111/petr.12648
Davison, K. A., Negrato, C. A., Cobas, R., Matheus, A., Tannus, L., Palma, C. S., et al. (2014). Relationship between adherence to diet, glycemic control and cardiovascular risk factors in patients with type 1 diabetes: A nationwide survey in Brazil. Nutrition Journal, 13, 19. https://doi.org/10.1186/1475-2891-13-19
Desager, K., Vermeulen, F., & Bodart, E. (2018). Adherence to asthma treatment in childhood and adolescence - a narrative literature review. Acta Clinica Belgica, 73(5), 348–355. https://doi.org/10.1080/17843286.2017.1409684
Dilley, M. A., Petty, C. R., Sheehan, W. J., Gaffin, J. M., Hauptman, M., & Phipatanakul, W. (2017). Adherence and stress in a population of inner-city children with asthma. Pediatric Allergy and Immunology, 28(6), 610–612. https://doi.org/10.1111/pai.12756
Djonou, C., Tankeu, A. T., Dehayem, M. Y., Tcheutchoua, D. N., Mbanya, J. C., & Sobngwi, E. (2019). Glycemic control and correlates in a group of sub Saharan type 1 diabetes adolescents. BMC Research Notes, 12(1), 50. https://doi.org/10.1186/s13104-019-4054-1
Dowhaniuk, J. K., Mileski, H., Saab, J., Tutelman, P., Thabane, L., & Brill, H. (2020). The gluten free diet: Assessing adherence in a pediatric celiac disease population. Journal of the Canadian Association of Gastroenterology, 3(2), 67–73. https://doi.org/10.1093/jcag/gwy067
Duarte, H. A., Harris, D. R., Tassiopoulos, K., Leister, E., Negrini, S. F., Ferreira, F. F., et al. (2015). Relationship between viral load and behavioral measures of adherence to antiretroviral therapy in children living with human immunodeficiency virus in Latin America. Brazilian Journal of Infectious Diseases, 19(3), 263–271. https://doi.org/10.1016/j.bjid.2015.01.004
Ernesto, A. S., Lemos, R. M., Huehara, M. I., Morcillo, A. M., Dos Santos Vilela, M. M., & Silva, M. T. (2012). Usefulness of pharmacy dispensing records in the evaluation of adherence to antiretroviral therapy in Brazilian children and adolescents. Brazilian Journal of Infectious Diseases, 16(4), 315–320. https://doi.org/10.1016/j.bjid.2012.06.006
Eaton, C. K., Gutierrez-Colina, A. M., Quast, L. F., Liverman, R., Lee, J. L., Mee, L. L., et al. (2018). Multimethod assessment of medication nonadherence and barriers in adolescents and young adults with solid organ transplants. Journal of Pediatric Psychology, 43(7), 789–799. https://doi.org/10.1093/jpepsy/jsy016
Eckrich, M. J., Wang, W. C., Yang, E., Arbogast, P. G., Morrow, A., Dudley, J. A., et al. (2013). Adherence to transcranial Doppler screening guidelines among children with sickle cell disease. Pediatric Blood & Cancer, 60(2), 270–274. https://doi.org/10.1002/pbc.24240
El Malla, H., Ylitalo Helm, N., Wilderäng, U., El Sayed Elborai, Y., Steineck, G., & Kreicbergs, U. (2013). Adherence to medication: A nation-wide study from the Children's Cancer Hospital, Egypt. World Journal of Psychiatry, 3(2), 25–33. https://doi.org/10.5498/wjp.v3.i2.25
Engelkes, M., Janssens, H. M., de Jongste, J. C., Sturkenboom, M. C., & Verhamme, K. M. (2016). Prescription patterns, adherence and characteristics of non-adherence in children with asthma in primary care. Pediatric Allergy and Immunology, 27(2), 201–208. https://doi.org/10.1111/pai.12507
Evans, S. D., Mellins, C. A., Leu, C. S., Warne, P., Elkington, K. S., Dolezal, C., et al. (2015). HIV treatment adherence measurement and reporting concordance in youth with perinatally acquired HIV infection and their caregivers. AIDS Patient Care and STDs, 29(1), 43–51. https://doi.org/10.1089/apc.2014.0058
Faint, N. R., Staton, J. M., Stick, S. M., Foster, J. M., & Schultz, A. (2017). Investigating self-efficacy, disease knowledge and adherence to treatment in adolescents with cystic fibrosis. Journal of Paediatrics and Child Health, 53(5), 488–493. https://doi.org/10.1111/jpc.13458
Farfel, A., Liberman, A., Yackobovitch-Gavan, M., Phillip, M., & Nimri, R. (2020). Executive functions and adherence to continuous glucose monitoring in children and adolescents with type 1 diabetes. Diabetes Technology & Therapeutics, 2(4), 265–270. https://doi.org/10.1089/dia.2019.0341
Fortin, K., Pries, E., & Kwon, S. (2016). Missed medical appointments and disease control in children with type 1 diabetes. Journal of Pediatric Health Care, 30(4), 381–389. https://doi.org/10.1016/j.pedhc.2015.09.012
Gendelman, O., Weitzman, D., Rosenberg, V., Shalev, V., Chodick, G., & Amital, H. (2018). Characterization of adherence and persistence profile in a real-life population of patients treated with adalimumab. British Journal of Clinical Pharmacology, 84(4), 786–795. https://doi.org/10.1111/bcp.13494
Genn, L., Chapman, J., Okatch, H., Abell, N., Marukutira, T., Tshume, O., et al. (2019). Pharmacy refill data are poor predictors of virologic treatment outcomes in adolescents with HIV in Botswana. AIDS and Behavior, 23(8), 2130–2137. https://doi.org/10.1007/s10461-018-2325-9
Greenley, R. N., Stephens, K. A., Nguyen, E. U., Kunz, J. H., Janas, L., Goday, P., & Schurman, J. V. (2013). Vitamin and mineral supplement adherence in pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 38(8), 883–892. https://doi.org/10.1093/jpepsy/jst037
Gross, R., Bandason, T., Langhaug, L., Mujuru, H., Lowenthal, E., & Ferrand, R. (2015). Factors associated with self-reported adherence among adolescents on antiretroviral therapy in Zimbabwe. AIDS Care, 27(3), 322–326. https://doi.org/10.1080/09540121.2014.969676
Grossoehme, D. H., Szczesniak, R. D., Britton, L. L., Siracusa, C. M., Quittner, A. L., Chini, B. A., et al. (2015). Adherence determinants in cystic fibrosis: Cluster analysis of parental psychosocial, religious, and/or spiritual factors. Annals of the American Thoracic Society, 12(6), 838–486. https://doi.org/10.1513/AnnalsATS.201408-379OC
Haeusler, G. M., Slavin, M. A., Bryant, P. A., Babl, F. E., Mechinaud, F., & Thursky, K. A. (2018). Management of fever and neutropenia in children with cancer: A survey of Australian and New Zealand practice. Journal of Paediatric and Child Health, 54(7), 761–769. https://doi.org/10.1111/jpc.13899
Harris, J., Pillinger, M., Fromstein, D., Gomez, B., Garris, I., Kanetsky, P. A., et al. (2011). Risk factors for medication non-adherence in an HIV infected population in The Dominican Republic. AIDS and Behavior, 15(7), 1410–1415. https://doi.org/10.1007/s10461-010-9781-1
Harrison, L., Ananworanich, J., Hamadache, D., Compagnucci, A., Penazzato, M., Bunupuradah, T., et al. (2013). Adherence to antiretroviral therapy and acceptability of planned treatment interruptions in HIV-infected children. AIDS and Behavior, 17(1), 193–202. https://doi.org/10.1007/s10461-012-0197-y
Hawwa, A. F., AlBawab, A., Rooney, M., Wedderburn, L. R., Beresford, M. W., & McElnay, J. C. (2015). Methotrexate polyglutamates as a potential marker of adherence to long-term therapy in children with juvenile idiopathic arthritis and juvenile dermatomyositis: An observational, cross-sectional study. Arthritis Research & Therapy, 17, 295. https://doi.org/10.1186/s13075-015-0814-z
Horneff, G., Klein, A., Klotsche, J., Minden, K., Huppertz, H. I., Weller-Heinemann, F., et al. (2016). Comparison of treatment response, remission rate and drug adherence in polyarticular juvenile idiopathic arthritis patients treated with etanercept, adalimumab or tocilizumab. Arthritis Research & Therapy, 18(1), 272. https://doi.org/10.1186/s13075-016-1170-3
Infanti, L. M., Elder, J. J., Franco, K., Simms, S., Statler, V. A., & Raj, A. (2020). Immunization adherence in children with sickle cell disease: A single-institution experience. Journal of Pediatric Pharmacology and Therapeutics, 25(1), 39–46. https://doi.org/10.5863/1551-6776-25.1.39
Inoue, S., Kodjebacheva, G., Scherrer, T., Rice, G., Grigorian, M., Blankenship, J., & Onwuzurike, N. (2016). Adherence to hydroxyurea medication by children with sickle cell disease (SCD) using an electronic device: A feasibility study. International Journal of Hematology, 104(2), 200–207. https://doi.org/10.1007/s12185-016-2027-x
Iroha, E., Esezobor, C. I., Ezeaka, C., Temiye, E. O., & Akinsulie, A. (2010). Adherence to antiretroviral therapy among HIV-infected children attending a donor-funded clinic at a tertiary hospital in Nigeria. African Journal of AIDS Research, 9(1), 25–30. https://doi.org/10.2989/16085906.2010.484543
Jeganathan, J., Lee, C. H., Rahme, A., Tiao, D. K., Weston, C., Dutt, S., et al. (2017). Pediatric-to-adult transition and medication adherence in patients with inflammatory bowel disease. Inflammatory Bowel Diseases, 23(7), 1065–1070. https://doi.org/10.1097/MIB.0000000000001114
Jochmann, A., Artusio, L., Jamalzadeh, A., Nagakumar, P., Delgado-Eckert, E., Saglani, S., et al. (2017). Electronic monitoring of adherence to inhaled corticosteroids: An essential tool in identifying severe asthma in children. European Respiratory Journal, 50(6), 1700910. https://doi.org/10.1183/13993003.00910-2017
Kacanek, D., Angelidou, K., Williams, P. L., Chernoff, M., Gadow, K. D., Nachman, S., & International Maternal Pediatric Adolescent AIDS Clinical Trials Group (IMPAACT) P1055 Study Team. (2015). Psychiatric symptoms and antiretroviral nonadherence in US youth with perinatal HIV: A longitudinal study. AIDS, 29(10), 1227–1237. https://doi.org/10.1097/QAD.0000000000000697
Kacanek, D., Huo, Y., Malee, K., Mellins, C. A., Smith, R., Garvie, P. A., et al. (2019). Nonadherence and unsuppressed viral load across adolescence among US youth with perinatally acquired HIV. AIDS, 33(12), 1923–1934. https://doi.org/10.1097/QAD.0000000000002301
Kelloway, J. S., Wyatt, R. A., & Adlis, S. A. (1994). Comparison of patients' compliance with prescribed oral and inhaled asthma medications. Archives of Internal Medicine, 154(12), 1349–1352.
Kelly, A., Crimston-Smith, L., Tong, A., Bartlett, S. J., Bekker, C. L., Christensen, R., et al. (2020). Scope of outcomes in trials and observational studies of interventions targeting medication adherence in rheumatic conditions: A systematic review. Journal of Rheumatology, 47(10), 1565–1574. https://doi.org/10.3899/jrheum.190726
Kikuchi, K., Poudel, K. C., Muganda, J., Majyambere, A., Otsuka, K., Sato, T., et al. (2012). High risk of ART non-adherence and delay of ART initiation among HIV positive double orphans in Kigali, Rwanda. PLoS One, 7(7), e41998. https://doi.org/10.1371/journal.pone.0041998
Kim, M. H., Mazenga, A. C., Yu, X., Ahmed, S., Paul, M. E., Kazembe, P. N., & Abrams, E. J. (2017). High self-reported non-adherence to antiretroviral therapy amongst adolescents living with HIV in Malawi: Barriers and associated factors. Journal of the International AIDS Society, 20(1), 21437. https://doi.org/10.7448/IAS.20.1.21437
Kori, M., Goldstein, S., Hofi, L., & Topf-Olivestone, C. (2021). Adherence to gluten-free diet and follow-up of pediatric celiac disease patients, during childhood and after transition to adult care. European Journal of Pediatrics, 180(6), 1817–1823. https://doi.org/10.1007/s00431-021-03939-x
Kremeike, K., Juergens, C., Alz, H., & Reinhardt, D. (2015). Patients' adherence in the maintenance therapy of children and adolescents with acute lymphoblastic leukemia. Klinische Padiatrie, 227(6–7), 329–334. https://doi.org/10.1055/s-0035-1559788
LeLeiko, N. S., Lobato, D., Hagin, S., Hayes, C., McQuaid, E. L., Seifer, R., et al. (2013a). 6-Thioguanine levels in pediatric IBD patients: Adherence is more important than dose. Inflammatory Bowel Diseases, 19(12), 2652–2658. https://doi.org/10.1097/01.MIB.0000436960.00405.56
LeLeiko, N. S., Lobato, D., Hagin, S., McQuaid, E., Seifer, R., Kopel, S. J., et al. (2013b). Rates and predictors of oral medication adherence in pediatric patients with IBD. Inflammatory Bowel Diseases, 19(4), 832–839. https://doi.org/10.1097/MIB.0b013e3182802b57
Lemanek, K. L., Kamps, J., & Chung, N. B. (2001). Empirically supported treatments in pediatric psychology: Regimen adherence. Journal of Pediatric Psychology, 26(5), 253–275. https://doi.org/10.1093/jpepsy/26.5.253
Lim, J. K., Lee, Y. J., & Park, J. H. (2020). Medication-related knowledge and medication adherence in pediatric and adolescent patients with inflammatory bowel disease. Journal of Korean Medical Science, 35(14), e92. https://doi.org/10.3346/jkms.2020.35.e92
Liu, J., Xu, R., Liu, Z., You, Y., & Meng, F. (2015). Factors influencing medication adherence after epilepsy surgery. Epileptic Disorders, 17(1), 47–51. https://doi.org/10.1684/epd.2014.0722
Loiselle, K. A., Gutierrez-Colina, A. M., Eaton, C. K., Simons, L. E., Devine, K. A., Mee, L. L., & Blount, R. L. (2015). Longitudinal stability of medication adherence among adolescent solid organ transplant recipients. Pediatric Transplantation, 19(4), 428–435. https://doi.org/10.1111/petr.12480
Loiselle, K., Lee, J. L., Szulczewski, L., Drake, S., Crosby, L. E., & Pai, A. L. (2016). Systematic and meta-analytic review: Medication adherence among pediatric patients with sickle cell disease. Journal of Pediatric Psychology, 41(4), 406–418. https://doi.org/10.1093/jpepsy/jsv084
Lowenthal, E. D., Marukutira, T., Tshume, O., Chapman, J., Anabwani, G. M., & Gross, R. (2015). Prediction of HIV virologic failure among adolescents using the pediatric symptom checklist. AIDS and Behavior, 19(11), 2044–2048. https://doi.org/10.1007/s10461-015-1061-7
Mackey, E. R., O'Brecht, L., Holmes, C. S., Jacobs, M., & Streisand, R. (2018). Teens with type 1 diabetes: How does their nutrition measure up? Journal of Diabetes Research, 5094569. https://doi.org/10.1155/2018/5094569
Mager, D. R., Marcon, M., Brill, H., Liu, A., Radmanovich, K., Mileski, H., et al. (2018). Adherence to the gluten-free diet and health-related quality of life in an ethnically diverse pediatric population with celiac disease. Journal of Pediatric Gastroenterology and Nutrition, 66(6), 941–948. https://doi.org/10.1097/MPG.0000000000001873
Malee, K., Williams, P., Montepiedra, G., McCabe, M., Nichols, S., Sirois, P. A., et al. (2011). Medication adherence in children and adolescents with HIV infection: Associations with behavioral impairment. AIDS Patient Care and STDs, 25(3), 191–200. https://doi.org/10.1089/apc.2010.0181
Malhotra, A., Whitley-Williams, P. N., Gaur, S., & Petrova, A. (2014). Treatment response in association with adherence patterns to highly active antiretroviral therapy in pediatric patients with perinatally acquired HIV infection. Journal of the International Association of Providers of AIDS Care, 13(5), 461–465. https://doi.org/10.1177/2325957414521498
Mehta, P., Pan, Z., Riley, M. D., & Liu, E. (2018). Adherence to a gluten-free diet: Assessment by dietician interview and serology. Journal of Pediatric Gastroenterology and Nutrition, 66(3), e67–e70. https://doi.org/10.1097/MPG.0000000000001705
McGee, R. G., Cowell, C. T., Arnolda, G., Ting, H. P., Hibbert, P., Dowton, S. B., & Braithwaite, J. (2020). Assessing guideline adherence in the management of type 1 diabetes mellitus in Australian children: A population-based sample survey. BMJ Open Diabetes Research & Care, 8(1), e001141. https://doi.org/10.1136/bmjdrc-2019-001141
McQuaid, E. L., Everhart, R. S., Seifer, R., Kopel, S. J., Mitchell, D. K., Klein, R. B., et al. (2012). Medication adherence among Latino and non-Latino white children with asthma. Pediatrics, 129(6), e1404–e1410. https://doi.org/10.1542/peds.2011-1391
Meng, X., Gao, W., Wang, K., Han, C., Zhang, W., & Sun, C. (2018). Adherence to medical regimen after pediatric liver transplantation: A systematic review and meta-analysis. Patient Preference and Adherence, 13, 1–8. https://doi.org/10.2147/PPA.S181195
Miner, P. J., Alexander, J., Ewing, H., & Gerace, L. (2013). Caregivers' beliefs associated with medication adherence among children and adolescents with epilepsy. Journal of Neuroscience Nursing, 45(4), 211–218. https://doi.org/10.1097/JNN.0b013e3182986127
Modi, A. C., Rausch, J. R., & Glauser, T. A. (2011). Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA, 305(16), 1669–1676. https://doi.org/10.1001/jama.2011.506
Monaghan, M., King, M. M., Alvarez, V., Cogen, F. R., & Wang, J. (2016). Changes in type 1 diabetes health indicators from high school to college. Journal of American College Health, 64(2), 157–161. https://doi.org/10.1080/07448481.2015.1068780
Mourão, A. F., Santos, M. J., Melo Gomes, J. A., Martins, F. M., Mendonça, S. C., Oliveira Ramos, F., et al. (2016). Effectiveness and long-term retention of anti-tumour necrosis factor treatment in juvenile and adult patients with juvenile idiopathic arthritis: Data from Reuma.pt. Rheumatology, 55(4), 697–703. https://doi.org/10.1093/rheumatology/kev398
Mozzillo, E., Zito, E., Maffeis, C., De Nitto, E., Maltoni, G., Marigliano, M., et al. (2017). Unhealthy lifestyle habits and diabetes-specific health-related quality of life in youths with type 1 diabetes. Acta Diabetologica, 54(12), 1073–1080. https://doi.org/10.1007/s00592-017-1051-5
Naar-King, S., Arfken, C., Frey, M., Harris, M., Secord, E., & Ellis, D. (2006). Psychosocial factors and treatment adherence in paediatric HIV/AIDS. AIDS Care, 18(6), 621–628. https://doi.org/10.1080/09540120500471895
Nasr, S. Z., Chou, W., Villa, K. F., Chang, E., & Broder, M. S. (2013). Adherence to dornase alfa treatment among commercially insured patients with cystic fibrosis. Journal of Medical Economics, 16(6), 801–808. https://doi.org/10.3111/13696998.2013.787427
Nazziwa, R., Mwesige, A. K., Obua, C., Ssenkusu, J. M., & Mworozi, E. (2014). Adherence to antiepileptic drugs among children attending a tertiary health unit in a low resource setting. The Pan African Medical Journal, 17, 44. https://doi.org/10.11604/pamj.2014.17.44.3399
Ndiaye, M., Nyasulu, P., Nguyen, H., Lowenthal, E. D., Gross, R., Mills, E. J., & Nachega, J. B. (2013). Risk factors for suboptimal antiretroviral therapy adherence in HIV-infected adolescents in Gaborone, Botswana: A pilot cross-sectional study. Patient Preference and Adherence, 7, 891–895. https://doi.org/10.2147/PPA.S47628
Nnebe-Agumadu, U., Adebayo, I., Erigbuem, I., James, E., Kumode, E., Nnodu, O., & Adekile, A. (2021). Hydroxyurea in children with sickle cell disease in a resource-poor setting: Monitoring and effects of therapy. A practical perspective. Pediatric Blood & Cancer, 68(6), e28969. https://doi.org/10.1002/pbc.28969
Oates, G. R., Stepanikova, I., Gamble, S., Gutierrez, H. H., & Harris, W. T. (2015). Adherence to airway clearance therapy in pediatric cystic fibrosis: Socioeconomic factors and respiratory outcomes. Pediatric Pulmonology, 50(12), 1244–1252. https://doi.org/10.1002/ppul.23317
Ochieng, W., Kitawi, R. C., Nzomo, T. J., Mwatelah, R. S., Kimulwo, M. J., Ochieng, D. J., et al. (2015). Implementation and operational research: Correlates of adherence and treatment failure among Kenyan patients on long-term highly active antiretroviral therapy. Journal of Acquired Immune Deficiency Syndromes, 69(2), e49–e56. https://doi.org/10.1097/QAI.0000000000000580
Pasca, L., Caraballo, R. H., De Giorgis, V., Reyes, J. G., Macasaet, J. A., Masnada, S., et al. (2018). Ketogenic diet use in children with intractable epilepsy secondary to malformations of cortical development: A two- Centre experience. Seizure, 57, 34–37. https://doi.org/10.1016/j.seizure.2018.03.005
Paschal, A. M., Mitchell, Q. P., Wilroy, J. D., Hawley, S. R., & Mitchell, J. B. (2016). Parent health literacy and adherence-related outcomes in children with epilepsy. Epilepsy & Behavior, 56, 73–82. https://doi.org/10.1016/j.yebeh.2015.12.036
Patel, N. G., Lindsey, T., Strunk, R. C., & DeBaun, M. R. (2010). Prevalence of daily medication adherence among children with sickle cell disease: A 1-year retrospective cohort analysis. Pediatric Blood & Cancer, 55(3), 554–556. https://doi.org/10.1002/pbc.22605
Patton, S. R. (2011). Adherence to diet in youth with type 1 diabetes. Journal of the American Dietetic Association, 111(4), 550–555. https://doi.org/10.1016/j.jada.2011.01.016
Patton, S. R., Dolan, L. M., Chen, M., & Powers, S. W. (2013). Dietary adherence and mealtime behaviors in young children with type 1 diabetes on intensive insulin therapy. Journal of the Academy of Nutrition and Dietetics, 113(2), 258–262. https://doi.org/10.1016/j.jand.2012.09.013
Patton, S. R., Driscoll, K. A., & Clements, M. A. (2017). Adherence to insulin pump behaviors in young children with type 1 diabetes mellitus. Journal of Diabetes Science and Technology, 11(1), 87–91. https://doi.org/10.1177/1932296816658901
Pelajo, C. F., Sgarlat, C. M., Lopez-Benitez, J. M., Oliveira, S. K., Rodrigues, M. C., Sztajnbok, F. R., et al. (2012). Adherence to methotrexate in juvenile idiopathic arthritis. Rheumatology International, 32(2), 497–500. https://doi.org/10.1007/s00296-010-1774-x
Psihogios, A. M., Kolbuck, V., & Holmbeck, G. N. (2015). Condition self-management in pediatric spina bifida: A longitudinal investigation of medical adherence, responsibility-sharing, and independence skills. Journal of Pediatric Psychology, 40(8), 790–803. https://doi.org/10.1093/jpepsy/jsv044
Psihogios, A. M., Murray, C., Zebracki, K., Acevedo, L., & Holmbeck, G. N. (2017). Testing the utility of a bio-neuropsychosocial model for predicting medical adherence and responsibility during early adolescence in youth with spina bifida. Journal of Pediatric Psychology, 42(9), 910–921. https://doi.org/10.1093/jpepsy/jsw092
Poulimeneas, D., Grammatikopoulou, M. G., Devetzi, P., Petrocheilou, A., Kaditis, A. G., Papamitsou, T., et al. (2020). Adherence to dietary recommendations, nutrient intake adequacy and diet quality among pediatric cystic fibrosis patients: Results from the GreeCF study. Nutrients, 12(10), 3126. https://doi.org/10.3390/nu12103126
Quittner, A. L., Zhang, J., Marynchenko, M., Chopra, P. A., Signorovitch, J., Yushkina, Y., & Riekert, K. A. (2014). Pulmonary medication adherence and health-are use in cystic fibrosis. Chest, 146(1), 142–151. https://doi.org/10.1378/chest.13-1926
Radcliff, Z., Weaver, P., Chen, R., Streisand, R., & Holmes, C. (2018). The role of authoritative parenting in adolescent type 1 diabetes management. Journal of Pediatric Psychology, 43(2), 185–194. https://doi.org/10.1093/jpepsy/jsx107
Rapoff, M. A. (2006). Management of adherence and chronic rheumatic disease in children and adolescents. Best Practice & Research. Clinical Rheumatology, 20(2), 301–314. https://doi.org/10.1016/j.berh.2005.11.002
Reeves, S. L., Tribble, A. C., Madden, B., Freed, G. L., & Dombkowski, K. J. (2018). Antibiotic prophylaxis for children with sickle cell anemia. Pediatrics, 141(3), e20172182. https://doi.org/10.1542/peds.2017-2182
Rohan, J. M., Fukuda, T., Alderfer, M. A., Wetherington Donewar, C., Ewing, L., Katz, E. R., et al. (2017). Measuring medication adherence in pediatric cancer: An approach to validation. Journal of Pediatric Psychology, 42(2), 232–244. https://doi.org/10.1093/jpepsy/jsw039
Rust, G., Zhang, S., & Reynolds, J. (2013). Inhaled corticosteroid adherence and emergency department utilization among Medicaid-enrolled children with asthma. The Journal of Asthma, 50(7), 769–775. https://doi.org/10.3109/02770903.2013.799687
Samson, C. M., Mager, D., Frazee, S., & Yu, F. (2017). Remission in pediatric inflammatory bowel disease correlates with prescription refill adherence rates. Journal of Pediatric Gastroenterology and Nutrition, 64(4), 575–579. https://doi.org/10.1097/MPG.0000000000001304
Sarkhy, A. A., El Mouzan, M. I., Saeed, E., Alanazi, A., Alghamdi, S., Anil, S., & Assiri, A. (2015). Clinical characteristics of celiac disease and dietary adherence to gluten-free diet among Saudi children. Pediatric Gastroenterology, Hepatology & Nutrition, 18(1), 23–29. https://doi.org/10.5223/pghn.2015.18.1.23
Shah, N. M., Hawwa, A. F., Millership, J. S., Collier, P. S., Ho, P., Tan, M. L., et al. (2013). Adherence to antiepileptic medicines in children: A multiple-methods assessment involving dried blood spot sampling. Epilepsia, 54(6), 1020–1027. https://doi.org/10.1111/epi.12126
Shakkottai, A., Kidwell, K. M., Townsend, M., & Nasr, S. Z. (2015). A five-year retrospective analysis of adherence in cystic fibrosis. Pediatric Pulmonology, 50(12), 1224–1229. https://doi.org/10.1002/ppul.23307
Shellmer, D. A., Dabbs, A. D., & Dew, M. A. (2011). Medical adherence in pediatric organ transplantation: What are the next steps? Current Opinion in Organ Transplantation, 16(5), 509–514. https://doi.org/10.1097/MOT.0b013e32834a8c89
Shetty, J., Greene, S. A., Mesalles-Naranjo, O., & Kirkpatrick, M. (2015). Adherence to antiepileptic drugs in children with epilepsy in a Scottish population cohort. Developmental Medicine & Child Neurology, 58(5), 469–474. https://doi.org/10.1111/dmcn.12942
Sleath, B., Gratie, D., Carpenter, D., Davis, S. A., Lee, C., Loughlin, C. E., et al. (2018). Reported problems and adherence in using asthma medications among adolescents and their caregivers. The Annals of Pharmacotherapy, 52(9), 855–861. https://doi.org/10.1177/1060028018766603
Smith, C., Gengiah, T. N., Yende-Zuma, N., Upfold, M., & Naidoo, K. (2016). Assessing adherence to antiretroviral therapy in a rural paediatric cohort in KwaZulu-Natal, South Africa. AIDS and Behavior, 20(11), 2729–2738. https://doi.org/10.1007/s10461-016-1419-5
Spaans, E., Kleefstra, N., Groenier, K. H., Bilo, H., & Brand, P. (2020). Adherence to insulin pump treatment declines with increasing age in adolescents with type 1 diabetes mellitus. Acta Paediatrica, 109(1), 134–139. https://doi.org/10.1111/apa.14931
Spekhorst, L. M., Hummel, T. Z., Benninga, M. A., van Rheenen, P. F., & Kindermann, A. (2016). Adherence to oral maintenance treatment in adolescents with inflammatory bowel disease. Journal of Pediatric Gastroenterology and Nutrition, 62(2), 264–270. https://doi.org/10.1097/MPG.0000000000000924
Steinberg, E. A., Moss, M., Buchanan, C. L., & Goebel, J. (2018). Adherence in pediatric kidney transplant recipients: Solutions for the system. Pediatric Nephrology, 33(3), 361–372. https://doi.org/10.1007/s00467-017-3637-0
Taghdir, M., Honar, N., Mazloomi, S. M., Sepandi, M., Ashourpour, M., & Salehi, M. (2016). Dietary compliance in Iranian children and adolescents with celiac disease. Journal of Multidisciplinary Healthcare, 9, 365–370. https://doi.org/10.2147/JMDH.S110605
Tan, J. W., Khoo, T. B., Burharudin, N. F., & Mohamed Shah, N. (2020). Medication self-management among parents of children with epilepsy at a tertiary care center in Malaysia. Epilepsy and Behavior, 111, 107317. https://doi.org/10.1016/j.yebeh.2020.107317
Tapsas, D., Fälth-Magnusson, K., Högberg, L., Hammersjö, J. Å., & Hollén, E. (2014). Swedish children with celiac disease comply well with a gluten-free diet, and most include oats without reporting any adverse effects: A long-term follow-up study. Nutrition Research, 34(5), 436–441. https://doi.org/10.1016/j.nutres.2014.04.006
Thornburg, C. D., Calatroni, A., Telen, M., & Kemper, A. R. (2010). Adherence to hydroxyurea therapy in children with sickle cell anemia. The Journal of Pediatrics, 156(3), 415–419. https://doi.org/10.1016/j.jpeds.2009.09.044
Tollisen, A., Flatø, B., Selvaag, A. M., Aasland, A., Ingebrigtsen, T., Sagen, J., & Lerdal. (2021). Treatment satisfaction with and adherence to disease-modifying antirheumatic drugs in adult patients with juvenile idiopathic arthritis. Arthritis Care & Research, 73(2), 221–231. https://doi.org/10.1002/acr.24113
Tshilolo, L., Tomlinson, G., Williams, T. N., Santos, B., Olupot-Olupot, P., Lane, A., …, & REACH Investigators. (2019). Hydroxyurea for children with sickle cell anemia in Sub-Saharan Africa. New England Journal of Medicine, 380(2), 121–131. https://doi.org/10.1056/NEJMoa1813598
Verma, D., Bachani, D., Acharya, A. S., Seth, A., & Hemal, A. (2020). Factors affecting adherence to treatment in children living with HIV. Indian Journal of Sexually Transmitted Diseases and AIDS, 41(2), 181–187. https://doi.org/10.4103/ijstd.IJSTD_43_18
Vitale, D. S., Greenley, R. N., Lerner, D. G., Mavis, A. M., & Werlin, S. L. (2015). Adherence to infliximab treatment in a pediatric inflammatory bowel disease cohort. Journal of Pediatric Gastroenterology and Nutrition, 61(4), 408–410. https://doi.org/10.1097/MPG.0000000000000817
Vreeman, R. C., Nyandiko, W. M., Liu, H., Tu, W., Scanlon, M. L., Slaven, J. E., et al. (2014). Measuring adherence to antiretroviral therapy in children and adolescents in western Kenya. Journal of the International AIDS Society, 17(1), 19227. https://doi.org/10.7448/IAS.17.1.19227
Walsh, K. E., Cutrona, S. L., Kavanagh, P. L., Crosby, L. E., Malone, C., Lobner, K., & Bundy, D. G. (2014). Medication adherence among pediatric patients with sickle cell disease: A systematic review. Pediatrics, 134(6), 1175–1183. https://doi.org/10.1542/peds.2014-0177
Webb, C., Myléus, A., Norström, F., Hammarroth, S., Högberg, L., Lagerqvist, C., et al. (2015). High adherence to a gluten-free diet in adolescents with screening-detected celiac disease. Journal of Pediatric Gastroenterology and Nutrition, 60(1), 54–59. https://doi.org/10.1097/MPG.0000000000000571
Yang, C., Hao, Z., Yu, D., Xu, Q., & Zhang, L. (2018). The prevalence rates of medication adherence and factors influencing adherence to antiepileptic drugs in children with epilepsy: A systematic review and meta analysis. Epilepsy Research, 142, 88–99. https://doi.org/10.1016/j.eplepsyres.2018.03.018
Yang, C., Yu, D., Li, J., & Zhang, L. (2020). Prevalence of medication adherence and factors influencing adherence to antiepileptic drugs in children with epilepsy from western China: A cross-sectional survey. Epilepsy and Behavior, 104(Pt A), 106662. https://doi.org/10.1016/j.yebeh.2019.106662
Yazigi, N. A. (2017). Adherence and the pediatric transplant patient. Seminars in Pediatric Surgery, 26(4), 267–271. https://doi.org/10.1053/j.sempedsurg.2017.07.010
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Rapoff, M.A., Duncan, C., Karlson, C. (2023). Definitions of Adherence, Types of Adherence Problems, and Adherence Rates. In: Adherence to Pediatric Medical Regimens. Issues in Clinical Child Psychology. Springer, Cham. https://doi.org/10.1007/978-3-031-27484-8_1
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