Fibromyalgia (FMS) is a syndrome of unknown etiology characterized by chronic pain, decreased pain threshold or tender points, fatigue, disturbed sleep, stiffness, cognitive dysfunction, anxiety and depression [1, 2]. These symptoms considerably impair the activities and social participation of FMS patients [3–5] and ultimately result in a lower health-related quality of life [6, 7]. Increasing effort has recently been made to determine the full impact and wider influence of FMS and other musculoskeletal diseases and to measure the personal and social impact captured by participation and social functioning (i.e., [8–10]). Under certain circumstances, the social consequences of FMS (such as problems at work, or difficulties getting together with friends) can often be even more challenging than the limitations patients experience with body functions and activities (i.e., pain, difficulty walking longer distances).
While there are numerous instruments for capturing the symptoms of FMS patients, (with [11, 12] providing a fine overview), there is a lack of questionnaires capable of measuring in detail FMS patients’ participation and social functioning. The Fibromyalgia Impact Questionnaire (FIQ/FIQ-R [13, 14]) is the only disease-specific instrument currently available (see ). However, it focuses closely on body functions and elementary activities within the domain of domestic life . More complex aspects of participation such as interpersonal interactions, social relationships, work and employment are either not addressed at all or if so, with very few items (vgl. ). Furthermore, the lack of evidence for the instrument’s factorial validity has been criticized , and there are claims of sex and ethnicity biases .
Prodinger et al.  report on testing a clinical instrument to measure functioning in FMS patients with categories from the International Classification of Functioning, Disability and Health (ICF) covering body functions, body structures, activity and participation. Yet the items addressing activity and participation employ the existing ICF-Core-Set for Chronic Widespread Pain, and were developed without specifically addressing FMS patients, moreover, important categories were eliminated in the psychometric testing (i.e., d920 recreation and leisure).
Van Eijk-Hustings et al.  measure participation via time spent on unpaid tasks, paid work, chores, leisure activities and social activities. It is questionable as to whether the mere number of hours is a valid parameter for measuring participation restriction, as this perspective disregards subjectively-experienced difficulties associated with social activities and context factors (such as family and professional obligations). Wilkie et al.  outline further measures of social function and participation in musculoskeletal populations and their pros and cons. Only one instrument (the generic questionnaire “Impact on Participation and Autonomy” ) has been administered to FMS patients. In light of the current situation concerning outcome measurements of FMS patients, Arnold et al. (, p. 119) conclude that “improved functional and quality of life measures for fibromyalgia are clearly needed”.
To summarize: there is no disease-specific instrument to measure the participation and social functioning of FMS patients in particular that has also been psychometrically validated. Our study’s aim was therefore to develop and test such an instrument (the “Fibromyalgia Participation Questionnaire” FPQ). Such a tool would make available a fibromyalgia-specific instrument for therapy evaluation and clinical studies with which the patients’ important outcome variables, namely participation and social functioning, can be captured. By involving FMS patients in the developmental process and by considering their specific problems, one can expect that this instrument will cover areas particularly relevant to the patients, and that it possesses high sensitivity to change. Its diagnostic application when treating FMS patients would be appropriate when the physician desires an overall impression of the everyday difficulties associated with FMS at the beginning of treatment. This information may prove relevant to the subsequent therapy (i.e., the urgency of psychological or psychosocial measures), and it cannot always be systematically captured via face-to-face consultation with the patient alone.