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Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
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Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
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PSP design away from the norm: Adolescents and rare disease
Living with and managing a chronic condition can be difficult for anyone
Sep 30, 2021
Living with and managing a chronic condition can be difficult for anyone. However, adolescents face unique challenges that make adherence particularly difficult. When the condition is rare and social and system support is not forthcoming, these challenges are often exacerbated.
What are the key barriers to adherence for adolescents with a chronic condition?
People between the ages of 10 and 19 face barriers that are specific to the stage of life they are in. For example, many adolescents experience:
- an inability to establish a response to symptoms because of unusual disease patterns brought on by puberty,
- pressure to manage treatment alongside many competing priorities (e.g. school, extracurricular activities) without fully developed time management skills,
- resistance to having ‘chronic disease patient’ as part of their identity, leading to denial of illness,
- underdeveloped impulse control and risk-assessment skills, leading to misperceptions of the importance of adherence and severity of their disease,
- an elevated fear of side effects that elicit cosmetic changes (e.g. weight gain, acne),
- frustration and burnout from feeling ‘different’ despite a strong desire to ‘fit in’,
- and poorly managed transitions to increased responsibility and adult services.
What additional barriers do adolescents with a rare disease face?
Managing a rare chronic condition during adolescence is especially difficult. For example, those with a rare disease are also burdened by limited access to quality information, the stress of living a life of uncertainty, and poor opportunities for social support. The isolation that comes from a lack of community and low disease awareness among HCPs and the general public can contribute to a feeling of being ‘lost’ or ‘cut off,’ putting them at an increased risk of mood states associated with poor adherence, like anxiety and depression.
Where is there an opportunity for impact?
Understanding the experience of this patient population is important to providing them with meaningful support. Not only do IQVIA’s digital, nurse, and behavioural science experts who work with these adolescents understand their experience, but they also know what type of support is required to meet their needs. Service recommendations include:
- repeated education combined with multiple behavioural strategies,
- medication reminders tailored to the individual patient,
- self-monitoring tools that facilitate routine building,
- gamification,
- peer support,
- help navigating the healthcare system,
- cognitive behavioural therapy (CBT),
- and support for their parents.
Knowing which techniques will foster positive behaviour change is critical to improving these adolescents’ quality of life and disease outcomes in both the short and longer team. To learn more about the best type of support for these patients, please consider reading our latest white paper “Living with a long-term condition – the adolescent experience “and watch the webinar available on demand here.