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SP0161 LOOKING FOR A NEEDLE IN A HAYSTACK: HELPING YOUNG PEOPLE TO MAKE SENSE OF EVIDENCE BASED HEALTH CARE
  1. Simon Stones
  1. University of Leeds, School of Healthcare, Leeds, United Kingdom

Abstract

While it has been suggested that there are no differences in the occurrence of risk-taking behaviours in young people with chronic conditions compared with healthy peers, young people with chronic conditions often face the dilemma of balancing twice the amount of risk to that of other young people, owing to their condition and treatment. For example, young people with juvenile idiopathic arthritis taking methotrexate face the risks of alcohol consumption plus the increased risk of toxicity from consuming alcohol while taking methotrexate. However, such issues are often ignored or overlooked (1).Research has suggested that a lack of experience with, and not worrying about serious health consequences may desensitise young people with chronic conditions to potential health risks (2). It is also recognised that young people”s perceived focus of health and wellbeing can often be on short-term goals; which is often paradoxical to the focus of families and healthcare professionals thinking about longer-term outcomes and prognosis.

It has been demonstrated that young people with chronic conditions value interventions that enable them to live a “normal” life – extending beyond the clinical management of their condition (3). The emotional, social, and vocational consequences of condition management can be profound (4). When this is coupled with the challenges of accessing accurate, trusted and individualised information and support, it can often leave young people and their families feeling as though they are looking for a ‘needle in a haystack”. Finding the best evidence requires knowledge of the best quality and most appropriate sources, as well as the ability to use and navigate such resources appropriately (5). In an era where health information is easier and faster to find than ever before, it is often a challenge for young people to be able to filter the ‘good” from the ‘not so good”. There are significant amounts of unreliable and irrelevant content on the internet, which ultimately places the responsibility for interpretation of information and advice onto young people and their families.

Therefore, age- and developmentally- appropriate opportunities to discuss health, wellbeing and the effects of treatment need to be provided early and regularly, across the lifecourse, in multiple formats to suit individual needs and circumstances. Attempts have already been made to make health information more accessible, for example, with the introduction of the Accessible Information Standard within the National Health Service (6). However, this is not necessarily enough to engage and support young people with chronic conditions in making sense of evidence-based healthcare. Information needs to be taken, in the right formats, to where young people are interacting, such as on certain social media platforms. This needs to be multifaceted, using peer- and community-driven approaches to enhance engagement. Furthermore, periodic consideration of the long-term risks and benefits of health and wellbeing interventions needs to happen across the lifecourse, both as a prompt for young people to air their concerns, but to also check their understanding. Only through understanding young people”s values, preferences, and concerns can a sustainable balance between condition control, treatment burden and quality of life be achieved.

References: [1] McDonagh JE. Getting It Right For Young People: Developing Adolescent Rheumatology Services. Future Rheumatol 2008; 3(2):133-41.

[2] Greening L, et al. Predictors of children”s and adolescents’ risk perception. J Ped Psych 2005; 30(5):425-35.

[3] van Houtum L, et al. Do everyday problems of people with chronic illness interfere with their disease management? BMC Public Health 2015;15:1000.

[4] Hart RI, et al. Being as normal as possible: how young people ages 16–25 years evaluate the risks and benefits of treatment for inflammatory arthritis. Arthritis Care Res 2016; 68(9):1288-94.

[5] NHS England. Accessible information: Specification v1.1. 2017.

Disclosure of Interests: Simon Stones Consultant for: SS has provided consultancy services to Envision Pharma Group, though this is not related to the contents of this abstract., Speakers bureau: SS has undertaken speaking engagements for Actelion, eyeforpharma, Four Health, Janssen and Roche, though these are not related to the contents of this abstract.

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