Improving care experiences for premenstrual symptoms and disorders in the United Kingdom (UK): A mixed-methods approach

Background Poor care experiences are reported for premenstrual disorders, which may result in negative outcomes such as distress, reduced healthcare engagement, and delays to diagnosis. Insights from those who have sought care for premenstrual symptoms previously are a valuable resource in identifying characteristics of poor care experiences as well as making recommendations for improvements based on their own experiences. Method An online survey was delivered, with participants recruited via social media. Data were explored using descriptive statistics and thematic analysis. Results The sample included 339 participants who completed at least 97% of the survey, endorsed premenstrual symptoms in consecutive menstrual cycles, and had sought formal help specifically for premenstrual symptoms. The mean age was 34.66 (SD = 5.88), with the majority identifying as women (n = 332, 97.94%) and white/Caucasian (n = 311, 91.74%). 75.22% (n = 255) felt that care was poor. 44.25% (n = 150) felt their symptoms were not taken seriously. 37.76% perceived a lack of HCP knowledge (n = 128). The majority did not receive recommendations of additional non-formal sources of help (i.e., websites, support groups; 84.96%, n = 288) or lifestyle changes (74.63%, n = 253). Better care experiences were associated with healthcare professionals taking symptoms seriously (U = 1383.00, p < .001), higher perceived healthcare professional knowledge (U = 1370.50, p < .001), and receiving recommendations of additional non-formal sources of help (X ²  = 48.251, df = 1, p < .001, Φc = .382) or lifestyle changes (X ²  = 7.849, df = 1, p = .005, Φc = .152). Thematic analysis revealed 8 aspects of care improvement: Empathetic care provision; HCP education, understanding, & research; Comprehensive symptom assessment and investigations; Diagnosis; Professional support and treatment provision; Signposting or referral to additional resources or sources of help; Wider healthcare system improvements; and, Patient role/voice and preferences. Conclusions Poor care experiences for premenstrual symptoms in the United Kingdom (UK) are characterized by dismissive attitudes and perceived lack of knowledge. Improved training provision for healthcare professionals is required. However, given the healthcare system constraints in the UK, research is needed to explore the feasibility and utility of informational toolkits for healthcare professionals. Utilization of standardized screening tools and patient-centered communication will likely ensure comprehensive assessments and reduce self-advocacy burdens. It is crucial to improve knowledge of therapeutic interventions to reduce barriers to treatment-seeking and enable shared decision-making.