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Growing up as a patient is hard to manage
By Clare Moloney
Adolescents who are living with and managing a chronic condition face unique challenges that make effective disease self-management particularly difficult. Not only can the rapid growth and physiological changes associated with adolescence produce unusual disease patterns and symptom presentation, but ongoing psychosocial development can negatively affect the emotional effect and cognitive processes that inform adherence.
In order to optimise treatment management behaviours and disease outcomes, these challenges need to be identified and systematically addressed by patients, parents and healthcare teams alike.
Chronic diseases and their treatments in general place varying degrees of psychological and behavioural demands on adolescents but there is evidence of rates of adherence differing by disease type, suggesting that the role of illness and treatment-specific perceptions have an influence.
For example, studies show that approximately 38% of adolescents with epilepsy are non-adherent, whereby this increases to approximately 50% of adolescents with asthma reported as failing to take prescribed doses of inhaled medication. There can also also be varying adherence levels within a single disease management regimen.
For adolescents with type 1 diabetes, a study showed that 25% were neglecting insulin injections, 29% were not monitoring their glucose levels and 81% were not following dietary recommendations.
As well as the short-term effects on disease management and outcomes, poor adherence during adolescence can also have detrimental, long-term effects. Adolescence is a key period for the creation of routines and to practice health behaviours that optimise disease self-management.
If this ‘independent’ management does not develop, individuals are often left unprepared during the transition to adult services. It is also evident that non- adherence among chronically ill adolescents can lead to sub-optimal disease-related outcomes in adulthood, contributing to an increase in both morbidity and mortality.
Adolescents share many psychological and physical barriers to adherence with a typical adult patient. For example, a treatment may be difficult to understand due to its complexity or unhelpful illness and treatment beliefs
can reduce motivation to follow prescribed regimens. However, adolescents also face challenges that are specific or more prescient to them as individuals experiencing physical and pubertal maturation and changing social and family dynamics. For example:
- Rapid physical changes can cause unusual disease patterns that make establishing a consistent response to symptom presentation difficult.
- Adolescents are typically busy and are often expected to manage several unrelated activities simultaneously (eg, school, extracurricular activities, employment, social commitments) and are still developing the skills to try to balance these demands. Many patients report that having so many competing priorities can make maintaining a routine and merely remembering to administer medication very difficult.
- Adolescence is also a critical time for the development of one’s self-concept. As these individuals are trying to discover who they are and determine the type of person they want to be, many are resistant to involuntarily adding ‘chronic disease patient’ to their identity.This resistance can lead to a denial of illness that manifests in the form of low motivation to adhere to treatment recommendations.
- Many adolescents report feeling embarrassed to tell peers about their disease and some describe having to take medication in front of other people their age as a major concern. Given that many treatment regimens, such as those for diabetes or cystic fibrosis, require meal-time medication to be taken at school, it is easy to understand how the perceived pressure to be accepted by one’s peers influences rates of adherence.
- Ongoing brain development can pose as a threat to adherence. Not only do adolescents have underdeveloped impulse control that may be associated with rebellion against a healthcare provider or parental advice, they also have limited risk assessment skills that prevent them from accurately evaluating the threat of a hypothetical situation. This leads to an inability to fully comprehend the long-term, unseen consequences of non-adherence and they are subsequently more likely to misperceive disease severity and treatment necessity.
- As these individuals grow older and transition to a more independent, patient- centred system, many factors can negatively affect their treatment adherence. Not only do many patients experience anxiety as a result of an unfamiliar care team, undefined degree of control or unexpected changes to therapy, but they can also face system-level difficulties related to the limited availability of specialty clinicians or uncoordinated transfer of medical records. When this transition from paediatric to adult services is not well-supported, these factors can induce a combination of confusion and frustration that severely threaten adherence.
Therefore, when considering the provision of support services to adolescent populations, it is important to consider the specific challenges and context that may be impacting self-management behaviours.
Find out more about these potential solutions by visiting www.iqvia.com or emailing clare.moloney@iqvia.com to request a copy of our recent White Paper: ‘Growing up as a patient is hard to manage’.
Clare Moloney is Programme Insights and Design Lead, Medical and Patient Communications at IQVIA
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