Paeds · adolescent-and-young-adult-medicine
Medication adherence and treatment fatigue
Also known as Medication adherence in adolescents · Treatment fatigue · Treatment burnout · Non-adherence in chronic adolescent disease · Self-management support in young people · Concordance and persistence
A fellowship approach to assessing and promoting medication adherence in adolescents living with chronic disease, recognising treatment fatigue as an expected phase, measuring adherence with the right tool, mapping modifiable barriers, and applying a non-judgemental, engagement-preserving stepwise intervention across ANZ, UK, US and Canada.
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Target exams
Red flags
- Diabetic ketoacidosis from missed or omitted insulin
- Seizure cluster or breakthrough seizures from withdrawn antiseizure medication
- Suspected solid-organ transplant rejection or graft loss from stopped immunosuppression
- Sickle cell pain crisis or acute chest from lapsed hydroxyurea
- Disclosure of insulin omission for weight control (diabulimia)
- Sudden disengagement from a previously engaged adolescent on life-sustaining therapy
Life stages
Care settings
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Board mappings
- General and Community Paediatrics
- Adolescent health and chronic-disease self-management
- Renewed curriculum for first-year trainees from 2027 — Learning goal 5: Clinical assessment – essential general paediatrics
- Renewed curriculum for first-year trainees from 2027 — Learning goal 6: Clinical management – essential general paediatrics
- Renewed curriculum for first-year trainees from 2027 — Learning goal 12: Communication with patients, families, and health professionals
- Renewed curriculum for first-year trainees from 2027 — Learning goal 15: Essential general paediatrics
- Clinical Applications
- Adolescent medicine, chronic-disease adherence and treatment fatigue
- Long Cases
- Short Cases
- Communication stations
- 2. Professional skills and knowledge: Communication
- 4. Professional skills and knowledge: Patient management
- 5. Health promotion and illness prevention
- 11. Adolescent health
- General Paediatrics: Promotes medication adherence and manages treatment fatigue across chronic conditions using a non-judgemental, shared-care approach
- Foundation of Practice (FOP)
- Applied Knowledge in Practice (AKP)
- Adolescent health, chronic disease and pharmacology adherence
- History
- Communication
- Clinical
- General Pediatrics Content Outline — Domain 10: Chronic Disease Management
- General Pediatrics Content Outline — Domain 11: Adolescent Medicine
- General Pediatrics Content Outline — Domain 16: Mental and Behavioral Health
- General Pediatrics EPA: Coordinating care for children and youth with special health-care needs
- Patient Care 5: Patient Management
- Interpersonal and Communication Skills 1: Patient- and Family-Centered Communication
- Systems-Based Practice 3: System Navigation for Patient Centered Care – Coordination of Care
- Professionalism 1: Professional Behavior and Ethical Principles
- Communicator
- Collaborator
- Health Advocate
- Pediatrics: Core EPA — Providing patient-centred chronic-disease management and adherence support for adolescents
Overview & Definition
A registrar inherits a 16-year-old liver-transplant recipient whose tacrolimus level has been subtherapeutic for three visits. The bloods are fine, the graft is quiet, and the family is "managing." At the next appointment the young person is jaundiced, and a biopsy shows rejection. The missed work was not a rare complication. It was a teenager who had quietly stopped taking a medicine that marked him out as different from his friends — and nobody had asked the question in a way he could answer. [10] [1]
Medication adherence is the extent to which a person's behaviour in taking medication corresponds to agreed recommendations from a health-care provider. The word agreed does the heavy lifting: adherence is a shared, negotiated behaviour, which is why the older term compliance — implying obedience to an instruction — has been retired in favour of language that does not blame. [1] [5]
Adherence is not one behaviour but three phases. Initiation is whether the young person ever starts the medicine. Implementation is whether they take it as prescribed day to day. Persistence is whether they keep taking it over the months and years the condition demands. A teenager who starts dutifully, drifts into missed doses at exam time, and stops altogether at university has failed implementation first and persistence second — and each phase needs a different conversation. [4] [1]
Treatment fatigue (sometimes called treatment burnout) is the experiential and developmental state in which the cumulative burden of a regimen — the pill count, monitoring, identity it confers, the future it promises but never delivers — erodes the motivation to keep going. It is the long shadow of a chronic illness in a young person whose brain is wired to value today over a distant tomorrow. Fatigue is the precursor to most non-adherence, and meeting it with a lecture only accelerates the disengagement it warns of. [1] [9]
The adherence conversation, in six moves
- 1
Frame
Curious, non-judgemental, time alone; normalise that everyone misses doses.
- 2
Measure
Self-report to open; refill records and objective data to triangulate.
- 3
Map barriers
Patient, regimen, family, system — probe the darkest first.
- 4
Agree goals
Shared decision-making aligned with the young person's values.
- 5
Tailor & simplify
Regimen change, reminders, family support, technology.
- 6
Re-measure & re-engage
Named next contact and a low-threshold way back in.
References14ShowHide
- [1]Hanghøj S, Boisen KA Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review. Journal of adolescent health : official publication of the Society for Adolescent Medicine, 2014.PMID 24182940
- [2]McGrady ME, Pai ALH 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, 2019.PMID 31038372
- [3]Kahana S, Drotar D, Frazier T Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. Journal of pediatric psychology, 2008.PMID 18192300
- [4]Pai AL, Drotar D Treatment adherence impact: the systematic assessment and quantification of the impact of treatment adherence on pediatric medical and psychological outcomes. Journal of pediatric psychology, 2010.PMID 19710252
- [5]Drotar D Strategies of adherence promotion in the management of pediatric chronic conditions. Journal of developmental and behavioral pediatrics : JDBP, 2013.PMID 24247913
- [6]Loiselle K, Lee JL, Szulczewski L, Drake S, Crosby LE, Pai AL Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease. Journal of pediatric psychology, 2016.PMID 26384715
- [7]Modi AC, Lim CS, Yu N, Geller D, Wagner MH, Quittner AL A multi-method assessment of treatment adherence for children with cystic fibrosis. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society, 2006.PMID 16679071
- [8]Ingerski LM, Baldassano RN, Denson LA, Hommel KA Barriers to oral medication adherence for adolescents with inflammatory bowel disease. Journal of pediatric psychology, 2010.PMID 19776229
- [9]Gray WN, Denson LA, Baldassano RN, Hommel KA Treatment adherence in adolescents with inflammatory bowel disease: the collective impact of barriers to adherence and anxiety/depressive symptoms. Journal of pediatric psychology, 2012.PMID 22080456
- [10]Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatric transplantation, 2010.PMID 20598086
- [11]Conn KM, Halterman JS, Lynch K, Cabana MD The impact of parents' medication beliefs on asthma management. Pediatrics, 2007.PMID 17766496
- [12]Gutierrez-Colina AM, Smith AW, Mara CA, Modi AC Adherence barriers in pediatric epilepsy: From toddlers to young adults. Epilepsy & behavior : E&B, 2018.PMID 29433948
- [13]Palacio A, Garay D, Langer B, Taylor J, Wood BA, Tamariz L Motivational Interviewing Improves Medication Adherence: a Systematic Review and Meta-analysis. Journal of general internal medicine, 2016.PMID 27160414
- [14]Plevinsky JM, Gutierrez-Colina AM, Carmody JK, Hommel KA, Crosby LE, McGrady ME Patient-Reported Outcomes for Pediatric Adherence and Self-Management: A Systematic Review. Journal of pediatric psychology, 2020.PMID 31845997