One or many labels? a longitudinal qualitative study of patients' journey to diagnosis at a specialist NHS Postural Tachycardia Syndrome (PoTS) clinic.

OBJECTIVES: Postural Tachycardia Syndrome (PoTS) is a poorly understood syndrome of multiple disabling symptoms. This study explored the process of seeking a diagnosis of PoTS. Analysis focused on changes before and after participants' first appointment with a national PoTS clinic, and explored whether a diagnosis is beneficial in the context of multiple co-occurring conditions and an absence of licenced treatments. DESIGN: A longitudinal, qualitative study. METHODS: Participants (n = 15) in this nested qualitative study were recruited from a larger study of people who had been newly referred to a National specialist NHS Cardiology PoTS service. Semi-structured interviews were conducted remotely before, and 6 months after their first appointment with the clinic. Data was analysed longitudinally and inductively using Reflexive Thematic Analysis. RESULTS: Three overarching themes were identified: "Slowly moving forward and finding positive gains", "Needing more pieces of the puzzle to see the bigger picture", and "The value and impact of investigations". Findings suggested that not much had changed in the 6 months between interviews. Participants were moving forward in terms of diagnoses, treatment and adjustment following their appointment, but many were still seeking further clarity and possible diagnoses. Investigations, appointments, and new-found problems, continued to have a substantial impact over time. CONCLUSIONS: The journey to diagnosis for patients with suspected PoTS appeared to promote acceptance of self, and of limitations posed by symptoms. However, many participants continued their search for an explanation for every symptom experience, and this may become increasingly complex, the more labels that have been acquired. Lack of clarity contributed to ongoing difficulties for this patient group alongside fraught relations with health care professionals (HCPs). A more coherent, integrated approach which is communicated clearly to patients is recommended.

Psychometric validation of the 15-item Patient Health Questionnaire - Anxiety and Depression Scale (PHQ-ADS) to assess psychological distress in breast cancer survivors.

OBJECTIVE: Psychological distress persists amongst breast cancer survivors, so reliable assessment of symptoms is essential. The Patient Health Questionnaire Anxiety and Depression Scale (PHQ-ADS) is a composite measure of depression and anxiety and has been used to measure distress. This study aimed to evaluate the psychometric properties of the PHQ-ADS within breast cancer survivors. METHOD: Breast cancer survivors (N = 280) were recruited online and followed up at 12-months. Depression (PHQ-8) and anxiety (GAD-7) items formed the composite PHQ-ADS score. Additional measures included: distress thermometer (convergent validity), fear of cancer recurrence and COVID distress (discriminant validity), and self-compassion (predictive validity). Confirmatory factor analysis (CFA) using weighted least squares mean and variance adjusted estimation was undertaken. RESULTS: One, two, and bifactor models underlying the PHQ-ADS were evaluated. The bifactor model had the most appropriate model fit overall. Omega hierarchical for the general distress factor was 0.914, accounting for 82% of explained variance. This suggests the PHQ-ADS is sufficiently unidimensional to warrant use of a total composite score. The PHQ-ADS demonstrated strong convergent and moderate discriminant validity. Self-compassion was an independent predictor of distress at 12-months. CONCLUSIONS: The PHQ-ADS is a valid measure for psychological distress in breast cancer survivors prescribed hormone therapy.