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Prevalence and Experience of Diagnostic Shifts in Youth Mental Healthcare

Periodic Reporting for period 1 - PAEDS (Prevalence and Experience of Diagnostic Shifts in Youth Mental Healthcare)

Okres sprawozdawczy: 2017-09-01 do 2019-08-31

Epidemiological data show that psychiatric diagnoses in childhood have limited temporal continuity. Over the course of a child’s contact with mental health services, a diagnosis received at one time can transition into a different diagnostic classification or be lost entirely. These diagnostic changes can occur for many reasons, including the onset of new symptoms, divergence of clinical opinion, and revision of diagnostic criteria. Such shifts can have profound implications for young people and their families, given the significance invested in diagnostic labels in making sense of emotional and behavioural difficulties. However, no research has investigated the prevalence of diagnostic shift in Child & Adolescent Mental Health Services (CAMHS) or explored how it is experienced by the children and families affected. PAEDS aimed to provide the first such evidence through a two-stage mixed-methods design. A review of clinical records established the prevalence and patterns of diagnostic shifts in CAMHS, while a series of qualitative interviews explored their social, emotional and pragmatic implications for young people. To exploit the study’s social and clinical value, the results informed the development of evidence-based resources that help service-providers and service-users communicate and adapt to diagnostic shifts. The project thereby promotes patient-centred youth mental health policy and practice, as well as contributing the first dedicated study of the phenomenon of diagnostic shift.
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.
PAEDS produced the first large-scale study of diagnostic trajectories in child psychiatric clinical records, providing novel data regarding prevalence and typical presentation of diagnostic transitions. The study facilitated the first estimate of the prevalence of diagnostic transitions in CAMHS: approximately one-in-five young service-users had their original psychiatric diagnosis revised or supplemented during their time in CAMHS. Understanding the typical patterns of diagnostic trajectories is necessary to both inform theory development in developmental psychopathology, and assist clinicians making judgements regarding risk and prognosis. It is also important for developing therapeutic strategies sensitive to longitudinal changes in children’s symptom profiles and diagnostic classifications, and the socio-emotional challenges these changes may present. By highlighting the frequency of diagnostic transitions, the research may also inform ongoing debates about the reliability and validity of diagnostic classifications in child psychiatry.

The most important implications of diagnostic transitions relate to the wellbeing of the young service-users involved. Prior to PAEDS, no research had explored how diagnostic transitions are communicated to young people and their families or the social, emotional or pragmatic effects they may have. The PAEDS qualitative study represents the first study of how diagnostic shifts can affect the lives of young service-users. Results reveal the multifaceted implications diagnostic shifts can have for young people and their families. Publication of the research will raise awareness among mental health practitioners of the challenges diagnostic changes may entail for vulnerable young people, and encourage sensitive diagnostic decision-making that balances the clinical rationale for diagnostic revisions against their possible emotional and pragmatic costs.

The PAEDS findings were used to develop evidence-based resources (leaflets and videos) for parents, young people and health professionals that raise awareness of and provide advice on managing diagnostic shifts. To maximise their impact, these have been made freely available at https://paedsdiagnosis.ucd.ie/.
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