Adherence to Oral Maintenance Treatment in Adolescents With Inflammatory Bowel Disease

Spekhorst, Lieke M.; Hummel, Thalia; Benninga, Marc A.; Rheenen, Patrick F. van; Kindermann, Angelika

doi:10.1097/mpg.0000000000000924

Cited by 51 publications

(42 citation statements)

References 44 publications

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“…nonadherence to prescribed therapy jeopardizing the treatment outcomes [31]. Thus, in patient care it is of utmost importance to perform a comprehensive evaluation of the psychosocial wellbeing and family functioning in pediatric IBD patients.…”

Section: Epidemiologymentioning

confidence: 99%

“…It is most suitable for excluding active, ongoing inflammation, especially when a patient reports minor symptoms. Further studies are warranted to describe the impact of fecal testing on therapy compliance[31] and treatment outcomes.In the follow-up of therapeutic responses, the non-specific surrogate markers need to be complemented with a thorough assessment of clinical disease activity. Fecal calprotectin, however, provides means to follow-up on therapeutic responses and is in clinical use for this purpose in many countries, especially in Scandinavia.…”

mentioning

confidence: 99%

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Progress in the treatment and outcome of pediatric inflammatory bowel disease patients

Kolho

Ainamo

2016

Expert Review of Clinical Immunology

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The number of pediatric patients with inflammatory bowel disease (IBD), namely Crohn´s disease, ulcerative colitis and unclassified colitis, has rapidly increased in Western countries. Areas covered: This review discusses how the treatment of pediatric IBD patients has improved,with attention given to therapeutic quality and cost. The literature search covers Medline-PubMed and the Cochrane Library, with February 2016 as the last search dates. Similarly to what has been the trend in the management of adult IBD, pediatric IBD therapy has become more active than before. High use of immunosuppressants and the availability of biological therapeutic agents has helped to control the extensive and aggressive course of pediatric IBD. Full disease control at an early phase has advantages such as preserving normal child growth and development, maintaining overall good health and quality of life, as well as decreasing the psychosocial burden of the disease. Expert commentary: A key research direction is to tailor treatment modalities according to anticipated individual phenotype and disease course. Another is to reduce healthcare costs by decreasing the so-far high rate of surgery of pediatric IBD patients, and, instead, to develop a more active approach to treatment than before.

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Section: Epidemiologymentioning

confidence: 99%

mentioning

confidence: 99%

Progress in the treatment and outcome of pediatric inflammatory bowel disease patients

Kolho

Ainamo

2016

Expert Review of Clinical Immunology

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“…Research has also associated poor adherence with negative psychosocial outcomes in children and adolescents, including anxiety and depression symptoms and lower health‐related quality of life in those with IBD . Rates of medication non‐adherence in paediatric IBD range from 2% to 93%, and non‐adherence is higher in adolescents compared to younger youth . This is particularly problematic because up to 20% of patients with Crohn's disease (CD) and 12% of individuals with ulcerative colitis (UC) are diagnosed before the age of 20 …”

Section: Introductionmentioning

confidence: 99%

“…[7][8][9][10] Rates of medication non-adherence in paediatric IBD range from 2% to 93%, and non-adherence is higher in adolescents compared to younger youth. 11,12 This is particularly problematic because up to 20% of patients with Crohn's disease (CD) and 12% of individuals with ulcerative colitis (UC) are diagnosed before the age of 20. 13 Attention to non-adherence to maintenance medication is critical in paediatric IBD as it may lead to unnecessary treatment escalation, 12 which has implications for both healthcare utilisation and costs.…”

Section: Introductionmentioning

confidence: 99%

“…11,12 This is particularly problematic because up to 20% of patients with Crohn's disease (CD) and 12% of individuals with ulcerative colitis (UC) are diagnosed before the age of 20. 13 Attention to non-adherence to maintenance medication is critical in paediatric IBD as it may lead to unnecessary treatment escalation, 12 which has implications for both healthcare utilisation and costs. Additionally, treatment escalation from maintenance therapy to steroids, immunosuppressive medications, biologic agents and surgical interventions involves making often difficult and complex medical decisions 14 and has an impact on health-related quality of life.…”

Section: Introductionmentioning

confidence: 99%

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Longitudinal non‐adherence predicts treatment escalation in paediatric ulcerative colitis

Carmody

Plevinsky

Peugh

et al. 2019

Aliment Pharmacol Ther

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Summary Background Medication non‐adherence in paediatric ulcerative colitis (UC) has been associated with negative health outcomes including flares in disease activity. However, no studies to date have examined longitudinal adherence to maintenance medication in a prospective controlled trial. Aims To determine whether objectively measured adherence to standardised mesalazine (mesalamine) therapy over time was related to remission at 52 weeks and the need for treatment escalation in newly diagnosed paediatric patients with UC Methods PROTECT (NCT01536535) was a prospective, inception cohort, multi‐site study of paediatric patients aged 4‐17 years with newly diagnosed UC followed for 52 weeks. Patients received standardised mesalazine, with pre‐established criteria for escalation to thiopurines or anti‐TNFα inhibitors. Patients used pill bottles with electronic caps to monitor mesalazine adherence. We tested whether longitudinal adherence to mesalazine predicted steroid‐free remission at week 52 (i.e. quiescent disease on mesalazine alone with no corticosteroids ≥4 weeks prior) and need for treatment escalation (i.e. introduction of immunomodulators, calcineurin‐inhibitors or anti‐TNFα inhibitors). Results Among 268 patients, average mesalazine adherence trajectories did not predict week 52 steroid‐free remission. Declining adherence over time strongly predicted treatment escalation (β = −.037, P = .001). By month 6, adherence rate ≤85.7% was associated with treatment escalation. Conclusions Non‐adherence may have affected therapeutic efficacy of standardised mesalazine, thereby contributing to need for treatment escalation. Routine adherence monitoring for at least 6 months following treatment initiation and addressing adherence difficulties early in the disease course are recommended.

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Greater number of perceived barriers to hydroxyurea associated with poorer health‐related quality of life in youth with sickle cell disease

Smaldone

Manwani

Green

2019

Pediatric Blood & Cancer

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Background: Despite medical benefits, hydroxyurea adherence in adolescents is often poor. As part of a baseline assessment of 28 youth (10–18 years) parent dyads who participated in a 6-month feasibility trial to improve hydroxyurea adherence, we measured the relationship between greater barriers to adherence and health-related quality of life (HRQL) from youth and parent perspectives. Procedure: Barriers were measured using the Adolescent and Parent Medication Barriers Scales with nine hydroxyurea items added. Barriers reported by ≥25% of the sample were considered common. Generic and disease-specific HRQL were measured by PedsQL and PedsQL Sickle Cell Disease modules. Data were analyzed using descriptive statistics, Cronbach alpha, Spearman correlation coefficients, and paired t tests. Results: Fifty-six subjects (28 dyads) participated. Youth reported greater barriers compared with parents (5.0 ± 3.9 and 3.5 ± 3.2; P = 0.03), with >80% of respondents reporting ≥1 barriers. Twelve barriers were reported by ≥25% of adolescents, whereas six were reported by ≥25% of parents. Of these, only two were common to both dyad members. Approximately one-third of youth had generic and disease-specific HRQL scores that fell at or below cutoff scores, suggesting being at risk for impaired HRQL. Greater barriers were inversely associated with poorer generic (parent r = −0.43, P = 0.03; youth r = −0.44, P < 0.001) and disease-specific HRQL (parent r = −0.53, P = 0.005; youth r = −0.53, P < 0.001). Conclusions: Hydroxyurea barriers were frequently reported but differed by dyad members’ perspective. Greater barriers were associated with poorer generic and disease-specific HRQL. To reduce barriers to hydroxyurea in youth with sickle cell disease, perspectives of both dyad members should be addressed.

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Adherence to Oral Maintenance Treatment in Adolescents With Inflammatory Bowel Disease

Cited by 51 publications

References 44 publications

Progress in the treatment and outcome of pediatric inflammatory bowel disease patients

Progress in the treatment and outcome of pediatric inflammatory bowel disease patients

Longitudinal non‐adherence predicts treatment escalation in paediatric ulcerative colitis

Greater number of perceived barriers to hydroxyurea associated with poorer health‐related quality of life in youth with sickle cell disease

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