Summary
Skin conditions are common in adolescence and can have considerable psychological and emotional burden. However, young people’s needs are not always best served by clinical services and resources. The Department of Health has identified the specialised needs of adolescents transitioning from paediatric to adult services as a priority, yet there are few dedicated dermatology clinics in the UK providing appropriate psychosocial support to address emotional needs. Similarly, resources are often lacking for this traditionally hard-to-reach age group and fail to involve and engage them. This Oxford University Hospital project focused on providing emotional support for young people through several innovative outputs. The first was the local service development of a designated clinic with embedded psychological support. Next, suitable resources were developed with input from young people with skin conditions, including development of the healthtalk.org website to share young people’s experiences. Dissemination nationally and internationally ensured that the voices of young people were heard. These low-cost interventions have shown positive impacts with far-reaching consequences for an often-neglected group of young patients with skin conditions.
Method
A designated clinic for young people was established, with embedded psychological support. Psychologists focused on opportunistic support alongside medical management. Inputs included emotional support to address anxiety, mood and shame/stigma. Interventions were applied as appropriate, including habit reversal, cognitive behavioural therapy and referral to self-help or further services. Audits of patient experience were performed, and quality improvements made in response to patients’ feedback. A review of clinic demographics and outcomes between 2016 and 2017 used both quality of life and disease-specific scores. Local initiatives were organised, including a course of mindful yoga for young people. A National Institute for Health Research (NIHR) grant funded development of the healthtalk.org patient experience web resource to include young people’s experiences of alopecia, eczema, acne and psoriasis in 2017. In 2019 and 2020, secondary analysis of the patient interviews was conducted to study key messages for health workers from young people. A cross-specialty conference was held in Oxford in 2017, entitled ‘What does it mean to be an adolescent in the 21st century?’ Further work was undertaken with patient groups and charities.
Results
Repeated audits (2014,2016, 2019) showed excellent patient feedback, particularly for the health staff and for the psychological support embedded in the clinic. A detailed review of clinics and outcomes was analysed over a 12-month period in 2016-2017. This showed improvement in quality-of-life scores across eczema and psoriasis from repeated clinic attendance. Statistically significant improvements in the teen quality-of-life (T-QoL) measure were recorded, with those with the most common skin conditions attending for repeat assessment by the psychologist (eczema and psoriasis). Disease-specific scores (POEM and PASI) also showed improvement in these conditions. The clinic provided successful management and discharge of patients who might otherwise need ongoing appointments, including those with chronic inflammatory skin conditions (psoriasis and eczema) and dermatitis artefacta (DA). Patients with DA are traditionally reluctant to seek psychological support and can be high service users, but the joint approach of dermatologist and psychologist showed positive outcomes. The mindful yoga course, run for six patients, showed benefits for relaxation, breathing, and becoming aware of breath and at peace with body/mind. All stated that they had learned something useful that they could continue with. Other benefits included being able to manage stress and anxiety outside of sessions. At the one-month clinic follow-up attended by participants, all reported that they were continuing to practise the techniques. The cohort saw multiple individual successes, including making it through vital years at school, successful applications to college, finding employment and forming relationships. These achievements were reflected in improved QoL scores and discharge from regular follow up. Longer-term positive life outcomes were likely but would need to be studied formally. Data from the healthtalk.org site in 2018 showed 7 million hits. Feedback reported that 81% of respondents said they felt less alone, 72% were better equipped to deal with their health and 71% reported a positive impact on their health.
Sustainability and Spread
The proven outcomes from the established clinic have ensured ongoing commitment from the Trust to sustain and expand it. The clinic has provided training for registrars, both locally and nationally. Staff presented at the national registrars’ training day in 2019 on ‘An approach to skin care in adolescents’. ‘Practical tips to help young people manage skin’ was delivered to GPs in 2021. Consultants establishing their own services have been supported too. Dissemination of clinical services has taken the form of a 2017 cross-specialty workshop, organised with a local GP and adolescent psychiatrist, on ‘What does it mean to be an adolescent in the 21st century?’ This attracted 200 participants, including health workers across research and primary and secondary care, young people and commissioners. Further presentations have been made at various events, including the Brighton regional meeting (2018), the British Society for Paediatric Dermatology (BSPD) annual meeting (2017), the British Association of Dermatologists (BAD) annual meeting (2018) and at the Young People’s Health 10-year anniversary conference (2018). The clinic model and outcomes have also been published in peer-reviewed journals. Other centres have directly requested help to establish similar services for young people, including Belfast, Liverpool, Brighton, Birmingham and St Thomas’s, London. Resources include the development of an adolescent section on the BSPD website in 2020, including information on setting up services, patient resources and BAD/BSPD co-produced patient information. The Healthtalk.org website makes the experiences of young people freely accessible, which are proven to make people feel less alone with their problems. Additionally, these experiences provide resources for education and teaching. Messages have been disseminated to health workers, highlighting young people’s wish to ‘address the emotional impact’, through presentations (BAD and World Congress for Paediatric Dermatology) and publications co-authored by patients. A workshop for young people was run with the charity Eczema Outreach Support in 2020. Future plans include longer-term follow-up and work to develop virtual emotional support platforms, via a BSPD/UK Dermatology Clinical Trials Network grant application in 2021.
