A review of CAMHS clinical records explored the frequency with which diagnostic shifts occur and the typical patterns through which they manifest. Data from CAMHS clinical records was extracted from a British mental health case register (n=12,543). Analysis calculated the proportion of children whose clinical records showed a longitudinal diagnostic transition (i.e. addition of a subsequent diagnosis of a different diagnostic class, at >30 days’ distance from their first diagnosis). Regression analyses investigated typical diagnostic sequences and their relationships with socio-demographic variables, service use and standardised measures of mental health. Results showed 19.3% of CAMHS attendees had undergone a longitudinal diagnostic transition. Ethnicity, diagnostic class and symptom profiles significantly influenced the likelihood of a diagnostic transition. Affective and anxiety/stress-related disorders longitudinally predicted each other, as did hyperkinetic and conduct disorders, and hyperkinetic and pervasive developmental disorders. By revealing the most common diagnostic sequences, this study enables policy-makers to anticipate future service needs and clinicians to make informed projections about their patients’ likely trajectories. Two papers resulting from this study are currently under review.
Qualitative interviews were conducted with children and parents who had experienced diagnostic shifts, to establish the narratives through which they mase sense of these changes and the social, emotional and pragmatic implications for young people's lives. Families with personal experience of diagnostic shifts were recruited through voluntary organisations and support groups. A series of narrative interviews were completed with young people (n=13) and parents (n=21). Thematic analysis of the interview data established a range of positive and negative repercussions that diagnostic shifts may have. Clinical implications included the introduction of new treatment options, improved engagement with therapy and disillusionment due to previous missed or mis-diagnoses. Emotional implications included challenges to the self-concept, relief at improved self-understanding, the revision of expectations for the young person’s future, and regret of ‘lost time’ before the ‘correct’ diagnosis was identified. Social implications included the loss/gain of diagnosis-related social identities and evolution of the parent-child relationship. Practical implications included the loss/gain of educational resources and possible change of service-providers. The research contributes to our understanding of how the poor reliability of psychiatric diagnosis plays out in real-world clinical practice and in the social and emotional worlds of service-users. A paper reporting the results of this analysis is currently in preparation.
In addition to the project's two main studies, the Fellow was involved in a number of additional studies relevant to the PAEDS goals. A systematic literature review was conducted of the existing qualitative evidence regarding how psychiatric diagnoses affect young people's sense of self and social identity (O'Connor, Kadianaki, Maunder & McNicholas, 2018). Another study used data from a national longitudinal study of Irish children (n=8568) to examine the sociodemographic, clinical and psychological variables that differentiate children with high hyperactivity/inattention symptoms, who had and had not received a diagnosis of ADHD (O'Connor & McNicholas, 2019).
Results were used to develop clinical resources to aid in communication and understanding of diagnostic shifts.