How communicating a diagnosis of polycystic ovarian syndrome (PCOS) impacts wellbeing: a retrospective community survey

BACKGROUND: Polycystic ovary syndrome (PCOS) is associated with wellbeing. Many women report dissatisfaction with the diagnostic process. AIM: This study assessed the impact of aspects of the diagnostic consultation on subsequent wellbeing. DESIGN & SETTING: A retrospective community survey. METHOD: Females with PCOS (n = 147) completed measures of aspects of the diagnostic consultation (consultation satisfaction, language used in terms of framing and focus) and current wellbeing (body esteem, quality of life). RESULTS: Most diagnoses took place in primary care. The majority showed a medium degree of satisfaction with the consultation. Most diagnoses were framed using a neutral term ‘raised’ but many used the more judgemental term ‘abnormal’. The majority focused on taking oral contraception and weight management. Poorer body esteem (body dissatisfaction and dieting behaviour) and poorer quality of life (self-identity, concerns about fertility, physical health, hirsutism, and overall quality of life) were predicted by lower communication comfort during the diagnostic consultation and greater use of the word ‘raised’. Greater use of the word ‘irregular’ predicted greater concerns about fertility, greater focus on fertility predicted greater concerns about physical health, and greater focus on appearance predicted greater concerns about hirsutism. CONCLUSION: How a diagnosis of PCOS is delivered can impact subsequent wellbeing. The diagnostic consultation may take a few minutes, yet how these minutes are managed, what words are used, and how this makes the patient feel may change how the patient makes sense of their condition and influence the impact of the condition on their wellbeing for the longer term.