Elsevier

The Lancet Oncology

Volume 12, Issue 1, January 2011, Pages 100-108
The Lancet Oncology

Review
Treatment non-adherence in teenage and young adult patients with cancer

https://doi.org/10.1016/S1470-2045(10)70069-3Get rights and content

Summary

Adhering to treatment can be a significant issue for many patients diagnosed with chronic health conditions and this has been reported to be greater during the adolescent years. However, little is known about treatment adherence in teenage and young adult (TYA) patients with cancer. To increase awareness of the adherence challenges faced by these patients, we have reviewed the published work. The available evidence suggests that a substantial proportion of TYA patients with cancer do have difficulties, with reports that up to 63% of patients do not adhere to their treatment regimens. However, with inconsistent findings across studies, the true extent of non-adherence for these young patients is still unclear. Furthermore, it is apparent that there are many components of the cancer treatment regimen that have yet to be assessed in relation to patient adherence. Factors that have been shown to affect treatment adherence in TYA patients include patient emotional functioning (depression and self-esteem), patient health beliefs (perceived illness severity and vulnerability), and family environment (parental support and parent–child concordance). Strategies that foster greater patient adherence are also identified. These strategies are multifactorial, targeting not only the patient, but the health professional, family, and treatment regimen. This review highlights the lack of interventional studies addressing treatment adherence in TYA patients with cancer, with only one such intervention being identified: a video game intervention focusing on behavioural issues related to cancer treatment and care. Methodological issues in measuring adherence are addressed and suggestions for improving the design of future adherence studies highlighted, of which there is a great need.

Introduction

Around 1800 teenagers and young adults (TYA), aged 13–24 years, are diagnosed with cancer in England each year.1 However, despite improvements in the efficacy of modern treatment, at least 30% of these patients will not be cured. Indeed, cancer remains the leading cause of non-accidental mortality within this age group.2 Biological factors, including metastatic potential, levels of tumour resistance, and differences in biology at different ages, especially when compared with children, account for a proportion of such treatment failures.3, 4 The poor gains in survival for some tumours might also be attributed to the poor accrual of TYA patients into clinical trials.4, 5, 6 With the recognition that adherence can be a major problem for adolescents diagnosed with other chronic health conditions,7, 8 it is indeed conceivable that adherence difficulties also contribute to the poor health outcomes seen in TYA patients with cancer.

Treatment adherence is a complex, multifaceted phenomenon, which has significant implications for therapeutic success, reliability of clinical trial data, and health-related quality of life.9, 10, 11 However, there is a paucity of studies examining treatment adherence in TYA patients with cancer. This might be due to the inference that patients with life-threatening conditions would be highly motivated to follow their treatment regimens.12 Another reason might be that because many components of cancer therapy were previously directly administered and controlled by medical professionals, the assumption is made that adherence would not be compromised in patients diagnosed with cancer. However, with the increased availability of oral antineoplastic agents and home delivery of some cytotoxic drugs, patients are now required to take on more responsibility for the administration of their treatment. Methodological issues, including controversy regarding the definitions of compliance and adherence, and the lack of psychometrically sound adherence measures also undoubtedly contribute to the paucity of data.13

To raise awareness of the adherence challenges faced by TYA patients with cancer, we have reviewed the available collective evidence. Previous reviews have included such studies. However, because some have reviewed studies recruiting patient cohorts ranging in age from childhood into early adulthood, it is difficult to draw meaningful conclusions about the adherence functioning specifically of TYA patients.10, 14, 15, 16, 17 The drug compliance of TYA patients with cancer has been reviewed.11 However, there are many components to cancer treatment. A clear, up-to-date synthesis of the published work on adherence to treatment in TYA patients with cancer is clearly warranted and forms the basis of this paper.

Because there are variable definitions in the published work of teenage and adolescence, both of these terms are used in this review.

Section snippets

Definitions of adherence and non-adherence

Compliance, defined as “the extent to which a person's behaviour, in terms of taking medication, following diets, or executing lifestyle changes coincides with medical or health advice”,18 has long dominated the published work. However, this approach implies submission and complacency, with the patient being a passive receiver of professional health advice.8 The term “adherence” has now gained prominence and refers to “the extent to which a person's behaviour (medications, diets, or lifestyle

Treatment non-adherence in TYA patients with cancer

Four studies22, 27, 28, 29 were identified that reported the non-adherence behaviour of TYA patients with cancer to oral medications. These studies showed between 27% and 63% of patients did not take their oral treatment as recommended. With the varied methods used in these studies, a quantitative synthesis of their findings is not appropriate. It is more informative to look closely at each study and we provide an overview of the individual studies in table 2.

Smith and colleagues27 analysed

Non-adherence and treatment outcome

To what degree might non-adherence actually affect therapeutic outcome? Dolgin and colleagues30 asked physicians to judge the extent to which they thought non-compliance affected prognosis in adolescent patients with cancer. They believed that non-compliance was a potential threat to outcome in six of 11 (55%) patients. However, in a second study, reported in the same paper, compliance was perceived as having detrimental outcome implications in only nine of 65 (14%) patients. Although the

Risk factors for non-adherence

Treatment adherence is not just a patient-driven phenomenon.7 Although a multitude of interacting variables (ie, patient, family, treatment, and health-professional factors) have been identified as key components affecting adherence in chronic illness,7, 13, 35 we report only those risk factors that have been investigated in the published work on adherence in TYA patients with cancer. Recognition of the risk factors that contribute to non-adherence allows the implementation of appropriate

Strategies

Strategies to foster greater adherence can be multifactorial, targeting issues concerning the patient, health professional, family, and treatment regimen.52 These approaches should be tailored to meet the needs of the individual.11, 53

It is paramount that adherence is never assumed.9, 11, 35 The accurate identification and assessment of non-adherence should be an integral component of care.41, 54

An understanding of why a TYA patient does not adhere is imperative.41 With the reluctance of some

Future research directions

Many adherence studies are hindered by small samples and one way of addressing this has been to recruit a heterogeneous group of patients, with respect to factors such as cancer diagnosis and length of time since diagnosis. Likewise, the grouping of teenagers and young adults is common. However, within this group there are of course cohorts of patients at very different physical, emotional, and psychological developmental stages. Collaborative efforts, both national and international, will help

Conclusion

The available evidence suggests that a substantial proportion of TYA patients with cancer have difficulties adhering to treatment and these difficulties are manifested in different ways and in response to different treatment demands. However, there are still many questions that remain unanswered. Can we prospectively identify which TYA patients are at risk of adherence difficulties? What are the mechanisms underlying treatment adherence? Which interventional programmes are most effective in

References (62)

  • RD Alston et al.

    Cancer incidence patterns by region and socio-economic deprivation in teenagers and young adults in England

    Br J Cancer

    (2007)
  • JM Birch et al.

    Survival from cancer in teenagers and young adults in England 1979–2003

    Br J Cancer

    (2008)
  • C Lewis et al.

    Compliance with cancer therapy by patients and physicians

    Am J Med

    (1983)
  • A Bleyer et al.

    The distinctive biology of cancer in adolescents and young adults

    Nat Rev Cancer

    (2008)
  • L Fern et al.

    Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group 2008

    Br J Cancer

    (2008)
  • KH Albritton et al.

    Access to care

    Pediatr Blood Cancer

    (2008)
  • Adherence to long-term therapies. Evidence for action 2003

  • H Kyngas

    Compliance of adolescents with chronic disease

    J Clin Nurs

    (2000)
  • D Matsui

    Current issues in pediatric medication adherence

    Pediatr Drugs

    (2007)
  • CK Tebbi

    Treatment compliance in childhood and adolescence

    Cancer Suppl

    (1993)
  • B Gesundheit et al.

    Drug compliance by adolescents and young adult cancer patients: challenges for the physician

  • J Ellis

    How adolescents cope with cancer and its treatment

    MCN Am J Matern Child Nurs

    (1991)
  • E Vermeire et al.

    Patient adherence to treatment: three decades of research. A comprehensive review

    J Clin Pharm Ther

    (2001)
  • KM Hanna

    Health behaviors of adolescents who have been diagnosed with cancer

    Issues Compr Pediatr Nurs

    (1993)
  • DJ Bearison

    Medication compliance in pediatric oncology

  • AH Partridge et al.

    Adherence to therapy with oral antineoplastic agents

    J Natl Cancer Inst

    (2002)
  • MT Pritchard et al.

    Understanding medication adherence in pediatric acute lymphoblastic leukaemia: a review

    J Pediatr Hematol Oncol

    (2006)
  • DG Cohen

    Treatment refusal in adolescents

    Semin Oncol Nurs

    (1986)
  • SM Sawyer et al.

    Sticky issue of adherence

    J Paediatr Child Health

    (2003)
  • RJ Shaw

    Treatment adherence in adolescents: development and psychopathology

    Clin Child Psychol Psychiatry

    (2001)
  • RS Festa et al.

    Therapeutic adherence to oral medication regimens by adolescents with cancer. I. Laboratory assessment

    J Pediatr

    (1992)
  • HA Davies et al.

    Variable mercaptopurine metabolism in children with leukaemia: a problem of non-compliance

    BMJ

    (1993)
  • DE Morisky et al.

    Concurrent and predictive validity of a self-reported measure of medication adherence

    Med Care

    (1986)
  • AF Hawwa et al.

    The development of an objective methodology to measure medication adherence to oral thiopurines in paediatric patients with acute lymphoblastic leukaemia—an exploratory study

    Eur J Clin Pharmacol

    (2009)
  • AL Pai et al.

    Treatment adherence impact: the systematic assessment and quantification of the impact of treatment adherence on pediatric medical and psychological outcomes

    J Pediatr Psychol

    (2009)
  • SD Smith et al.

    A reliable method for evaluating drug compliance in children with cancer

    Cancer

    (1979)
  • CK Tebbi et al.

    Compliance of pediatric and adolescent cancer patients

    Cancer

    (1986)
  • BD Kennard et al.

    Nonadherence in adolescent oncology patients: preliminary data on psychological risk factors and relationships to outcome

    J Clin Psychol Med Settings

    (2004)
  • MJ Dolgin et al.

    Caregivers' perception of medical compliance in adolescents with cancer

    J Adolesc Health Care

    (1986)
  • RN Jamison et al.

    Cooperation with treatment in adolescent cancer patients

    J Adolesc Health Care

    (1986)
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