In their own words: qualitative study of high-utilising primary care patients with medically unexplained symptoms

Background: High utilising primary care patients with medically unexplained symptoms (MUS) often frustrate their primary care providers. Studies that elucidate the attitudes of these patients may help to increase understanding and improve confidence of clinicians who care for them. The objective of this study was to describe and analyze perceptions and lived experiences of high utilising primary care patients with MUS. Methods: A purposive sample of 19 high utilising primary care patients for whom at least 50% (69.6% in this sample) of visits for two years could not be explained medically, were encouraged to talk spontaneously about themselves and answer semi-structured questions. Verbatim transcripts of interviews were analyzed using an iterative consensus building process. Results: Patients with MUS almost universally described current and/or past family dysfunction and were subjected to excessive testing and ineffective empirical treatments. Three distinct groups emerged from the data. 1) Some patients, who had achieved a significant degree of psychological insight and had success in life, primarily sought explanations for their symptoms. 2) Patients who had less psychological insight were more disabled by their symptoms and felt strongly entitled to be excused from normal social obligations. Typically, these patients primarily sought symptom relief, legitimization, and support. 3) Patients who expressed worry about missed diagnoses demanded excessive care and complained when their demands were resisted. Conclusion: High utilising primary care patients are a heterogeneous group with similar experiences and different perceptions, behaviours and needs. Recognizing these differences may be critical to effective treatment and reduction in utilisation.