From Symptom Onset to Diagnosis:a critical exploration into the experiences of young people with Juvenile-onset Systemic Lupus Erythematosus
Juvenile Systemic Lupus Erythematosus (JSLE) is a life-long condition affecting 6-30 per 100,000 children and young people per year, depending on ethnicity, in the UK (Papadimitraki & Isenberg 2009). Symptoms include fatigue, tiredness, malar rash, joint problems, headaches and kidney problems. There is a paucity of literature relating to the experiences of young people before and during diagnosis of JSLE. An understanding of young people’s experiences and the issues relevant to them could help improve outcomes and facilitate the development of standards of care in JSLE. The aims of the study were to: (1) describe the journey from onset of symptoms to diagnosis in JSLE from a young person’s perspective by exploring the stories they tell; and (2) ascertain key points, if any, in the journey to diagnosis to generate deeper insight into access to care for young people with JSLE. This practitioner-researcher study used an exploratory qualitative approach. The setting was the UK tertiary centre for paediatric rheumatology in which the researcher works. The study utilised audio-recorded, in-depth interviews with eight young people (aged 12-19 years) with JSLE who told their story of their own ‘journey to diagnosis’. Parental consent was obtained for their child’s participation for young people aged under 16 years and assent was gained from every young person under the age of 16. Those young people aged 16 and above provided their own consent in accordance with ethical guidelines. The audio-recordings were transcribed and the transcripts were subjected to thematic analysis. The researcher maintained a fieldwork diary and used a reflexive approach throughout the study. Four main themes were generated and these themes are linked by a meta-theme ‘passing of time’. Although evident across all the themes, the ‘passing of time’ was not a static concept as it evolves and changes and influences the young people’s experiences. The themes are chronologically ordered reflecting the young people’s ‘journey to diagnosis’. The first theme, ‘Emerging Illness’ encompasses the first descriptions of a change in health, the emergence of physical symptoms and the impact of these symptoms on the young people’s lives. Often symptoms were dismissed or ignored. The second theme, ‘Seeking Help’ lasted from a period of several weeks to up to 2 years and covered the first and ongoing contacts with health services. Most young people experienced dissatisfaction with how their symptoms were dealt with. The third theme, ‘Diagnosis of Lupus’ was a significant time point as the young people experienced a major change in health status. For some, diagnosis was a relief; others were worried by the implications of the condition. Finally, the fourth theme, ‘Resilience, Reflection & Recovery’ encompasses the experiences that had occurred after diagnosis. It is characterised by things that went well and things that did not. In conclusion, all young people should have the opportunity to tell their ‘journey to diagnosis’ story to a care team member. Understanding young people’s experiences of 'symptom onset to diagnosis' has the potential to reduce the impact and burden of this disease. Key recommendations include supporting and educating young people to recognise symptom-related changes; improving mechanisms, especially within primary care, for young people and families seeking help for such symptoms; raising awareness of emerging symptoms of lupus in young people within the wider community, including schools; providing young people with the opportunity to reflect and tell their story from ‘symptom onset to diagnosis’ to an appropriate member of the healthcare team; increasing support, especially at school, for young people after they have been diagnosed to enable them to successfully negotiate this life long illness through adolescent transition into adulthood.
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