Patients' experiences of living with and receiving treatment for fibromyalgia syndrome: a qualitative study

<p>Abstract</p> <p>Background</p> <p>Fibromyalgia syndrome (FMS) presents a challenge for patients and health care staff across many medical specialities. The aetiology is multi-dimensional, involving somatic, psychological and social factors. Patients' views were obtained to understand their experience of living with this long-term condition, using qualitative interviews.</p> <p>Methods</p> <p>12 patients were recruited and stratified by age, gender and ethnicity from one rheumatology outpatient clinic, and a departmental held database of patients diagnosed with FMS.</p> <p>Results</p> <p>Patients' accounts of their experience of FMS resonated well with two central concepts: social identity and illness intrusiveness. These suggested three themes for the analytical framework: life before and after diagnosis (e.g. lack of information about FMS, invisibility of FMS); change in health identity (e.g. mental distress, impact on social life) and perceived quality of care (e.g. lack of contact with nurses, attitudes of specialists). The information provided from one male participant did not differ from the female patients, but black and ethnic community patients expressed a degree of suspicion towards the medication prescribed, and the attitudes displayed by some doctors, a finding that has not been previously reported amongst this patient group. Patients expected more consultation time and effective treatment than they received. Subjective experiences and objective physical and emotional changes were non-overlapping. Patients' accounts revealed that their physical, mental and social health was compromised, at times overwhelming and affected their identity.</p> <p>Conclusion</p> <p>FMS is a condition that intrudes upon many aspects of patients' lives and is little understood. At the same time, it is a syndrome that evokes uneasiness in health care staff (as current diagnostic criteria are not well supported by objective markers of physiological or biochemical nature, and indeed because of doubt about the existence of the condition) and places great demands on resources in clinical practice. Greater attention needs to be paid to the links between the explanatory models of patients and staff, and most important, to the interrelationship between the complex physical, psychological and social needs of patients with FMS. Taking a less medical but more holistic approach when drawing up new diagnostic criteria for FMS might match better individuals' somatic and psycho-social symptom profile and may result in more effective treatment.</p

Economic evaluation of new models of care: does the decision change between cost-utility analysis and multi-criteria decision analysis?

Objectives: To experiment with new approaches of collaboration in healthcare delivery, local authorities implement new models of care. Regarding the local decision-context of these models, Multi-Criteria Decision Analysis (MCDA) may be of added value to Cost-Utility Analysis (CUA), as it covers a wider range of outcomes. This study compares the two methods using a side-by-side application. Methods: A new Dutch model of care, Primary Care Plus (PC+), was used as case study to compare the results of CUA and MCDA. Data of patients referred to PC+ or care-as-usual was retrieved by questionnaires and administrative databases with a three-month follow-up. Propensity score matching together with generalised linear regression models was used to reduce confounding. Univariate and probabilistic sensitivity analyses were performed to explore uncertainty in the results. Results: Although both methods indicated PC+ as dominant alternative, complementary differences were observed. MCDA provided additional evidence that PC+ improved access to care (standardised performance score of 0.742 versus 0.670), improvement in health-related quality of life was driven by the psychological well-being component (standardised performance score of 0.710 versus 0.704), estimated the budget required for the PC+ to be affordable in addition to preferable (€521.42 per patient). Additionally, MCDA was less sensitive to the utility measures used. Conclusions: MCDA may facilitate an auditable and transparent evaluation of new models of care by providing additional information on a wider range of outcomes and incorporating affordability. However, more effort is needed to increase the usability of MCDA among local decision makers.</p