Review of methods for measuring and comparing center performance after organ transplantation.

The assessment of outcomes after transplantation is important for several reasons: it provides patients with data so that they can make informed decisions about the benefits of transplantation and the success of the transplant unit; it informs commissioners that resources are allocated properly; and it provides clinicians reassurance that results are acceptable or, if they are not, provides early warning so that problems can be identified, corrections can be instituted early, and all interested parties can be reassured that scarce resources are used fairly. The need for greater transparency in reporting outcomes after liver transplantation and for comparisons both between and within centers has led to a number of approaches being adopted for monitoring center performance. We review some of the commonly used methods, highlight their strengths and weaknesses, and concentrate on methods that incorporate risk adjustment. Measuring and comparing outcomes after transplantation is complex, and there is no single approach that gives a complete picture. All those using analyses of outcomes must understand the merits and limitations of individual methods. When used properly, such methods are invaluable in ensuring that a scarce resource is used effectively, any adverse trend in outcomes is identified promptly and remedied, and best performers are identified; they thus allow the sharing of best practices. However, when they are used inappropriately, such measurements may lead to inappropriate conclusions, encourage risk-averse behavior, and discourage innovation.

Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies.

There is growing interest in synthesizing qualitative research. Despite certain philosophical and methodological difficulties, such syntheses are potentially useful in enriching the insights of empirical qualitative work in a particular area. This paper reports an interpretive review of research into the subjective experience of fibromyalgia syndrome (FMS), utilizing principles of metasynthesis. Twenty-three separate studies were identified. Each study was evaluated using methodological criteria to provide a context for interpretation of substantive findings. Principal findings were extracted and synthesized under four broad categories: experience of symptoms, search for diagnosis, legitimacy, and coping. Our findings re-emphasised the point that pain in FMS is ambiguous and invisible, raising questions of credibility and legitimacy. People with a diagnosis of FMS appear to frame the experience of symptoms within the biomedical model, where FMS is viewed as an organic entity potentially identifiable through biomedical tests. The subjective meaning and perceived legitimacy of the diagnostic label appear to be important factors in the subjective experience of FMS. Coping strategies adopted can be subsumed under Mannerkorpi, K., Kroksmark, T., Ekdahl, C. [1999. How patients with fibromyalgia experience their symptoms in everyday life. Physiotherapy Research International, 4(2), 110-122.] notions of 'struggling', 'adapting', 'in despair' and 'giving up'. Most studies had at least one identified methodological shortcoming, though it is not straightforward to identify the significance of such shortcomings. We conclude that there is scope for further research into the subjective experience of FMS, and into the methodology of metasynthesis, especially in relation to methodological appraisal.

Diagnostic experience of patients with fibromyalgia - A meta-ethnography.

Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients' diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. Great relief was felt at finally achieving the fibromyalgia syndrome diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. The diagnosis did not provide a meaningful explanation of individuals' suffering and had limited power to legitimate illness. Patients felt blamed for their failure to recover, threatening their personal credibility and moral identity. Conclusion The fibromyalgia syndrome diagnosis has limitations in validating and making sense of patients' illness experiences and in providing social legitimation of their illness. Social relationships are strained during the diagnostic process and in the course of ineffective therapies.

Creating meaning in fibromyalgia syndrome.

Gaining a diagnosis is considered to legitimate a person's illness, to both the self and the wider social world, while also giving hope that treatments, and possibly a cure, will be found. A further function of diagnosis from the patient's perspective is to give meaning to the illness experience, which is often uncertain and confusing. To do so, a diagnosis must itself have meaning. This paper explores the creation of meaning in a medically unexplained disorder, fibromyalgia syndrome (FMS). Semi-structured interviews, in which the diagnostic process was explored, were conducted with 17 people diagnosed with FMS in the United Kingdom, selected from a hospital database (16 women, 1 man). Documentary analysis was also undertaken on information available from support groups and health professionals. Although initially an acceptable diagnosis to sufferers, FMS was viewed as a mysterious label, which provided no meaning at the time of diagnosis. The sought information was accessed in an attempt to resolve its meaninglessness, but this proved problematic due to the ambiguous definition of FMS within the medical and support group literature, the invisible nature of the illness, and the lack of an environment where these uncertainties could be openly discussed. Informants varied in the degree of longer-term acceptance of a diagnosis of FMS, in relation to the concordance they achieved between the diagnosis and their experience of illness.