Refining the NEED (Needs Examination, Evaluation and Dissemination) Methods for Use in Psychotic Disorders in...

The NEED (Needs Examination, Evaluation and Dissemination) framework provides a structured, multidimensional approach to assess unmet health-related needs at both patient and societal levels, using predefined criteria, indicators and standardised data collection tools (e.g., questionnaire and interview guide). This paper outlines the methodological adaptations and considerations required when applying the NEED framework to psychotic disorders (PD). PD encompass a spectrum of conditions, including schizophrenia and schizoaffective disorder, and are characterised by overlapping symptom clusters and inconsistencies in communication of diagnoses in patient contact, which complicates research design and the delineation of study populations.

In preparation for a NEED study in PD, a literature review and expert consultations informed the inclusion and exclusion criteria, choice of diagnostic terminology, refinement of data collection tools and the development of a recruitment strategy. The adapted tools were subsequently piloted in four interviews to assess clarity and feasibility.

Individuals with PD face distinct challenges for research participation. Stigma surrounding diagnostic labels contributes to a gap between clinical diagnosis and self-identification, while limited illness insight, cognitive impairments (e.g., reduced attention span), and distrust of research further complicate participation. As the NEED methodology relies on self-identification and self-report, these characteristics required several adaptations. First, inclusion criteria were broadened from the initial intention of focusing on schizophrenia to PD to accommodate diagnostic uncertainty and variation in illness insight, while non-stigmatising terminology was adopted for recruitment materials and survey instruments. Second, the questionnaire and interview guide were adapted to account for diagnostic variability, risk of non-differential misclassification and the need for clear, sensitive wording. Third, the recruitment strategy incorporated materials that were as minimally stigmatising as possible, a wide range of actors and channels, on-site support by researchers, and the option for proxy completion by legal representatives to enable inclusion of individuals with severe impairments.

This study highlights methodological challenges specific to conducting needs assessments in PD and describes the adaptations required to refine the NEED toolbox for this population. The reflections presented here aim to guide future applications of the NEED framework in mental health and other complex, stigmatised conditions.

A person with lived experience of a psychosis disorder was actively involved throughout the entire study design. Their input was crucial in shaping the study design, informing the relevance and formulation of the questions in the questionnaire, and ensuring the study reflected the perspectives and priorities of people directly affected by PD.