Pain is not the major determinant of quality of life in fibromyalgia: results from a retrospective "real world" data analysis of fibromyalgia patients.

OBJECTIVE: To identify correlates of quality of life (QoL) measured with the Quality of Life Scale (QOLS) in participants of a multidisciplinary day hospital treatment program for fibromyalgia (FM). METHODS: In this cross-sectional, observational study, "real world" data from 480 FM patients including socio-demographics, pain variables and questionnaires such as the SF-36, Beck Depression Inventory (BDI), Multiphasic Pain Inventory (MPI), SCL-90-R and others were categorized according to the components (body structure and function, activities and participation, personal factors, environmental factors) of the International Classification of Functioning (ICF). For every ICF component, a linear regression analysis with QOLS as the dependent variable was computed. A final comprehensive model was calculated on the basis of the results of the five independent analyses. RESULTS: The following variables could be identified as main correlates for QoL in FM, explaining 56% of the variance of the QOLS (subscale/questionnaire and standardized beta in parenthesis): depression (- 0.22), pain-related interference with everyday life (- 0.19), general activity (0.13), general health perception (0.11), punishing response from others (- 0.11), work status (- 0.10), vitality (- 0.11) and cognitive difficulties (- 0.12). Pain intensity or frequency was not an independent correlate. CONCLUSIONS: More than 50% of QoL variance could be explained by distinct self-reported variables with neither pain intensity nor pain frequency playing a major role. Therefore, FM treatment should not primarily concentrate on pain but should address multiple factors within multidisciplinary therapy.

Similar problem in the activities of daily living but different experience: a qualitative analysis in six rheumatic conditions and eight European countries.

OBJECTIVE: The aim of the present study was to compare and contrast the concepts of functioning in daily life which were important to patients with different rheumatological conditions. METHOD: The study comprised a qualitative analysis of 44 focus groups in eight European countries, in 229 patients with fibromyalgia, hand osteoarthritis, psoriatic arthritis, rheumatoid arthritis, systemic lupus erythematosus and systemic sclerosis, using the World Health Organization, 2001 International Classification of Functioning, Disability and Health as a framework. Concepts and - where necessary - also sub-concepts and transcripts were combined and compared independently by two researchers who, in case of disagreement, achieved consensus through discussion. RESULTS: Twenty concepts out of 109 (e.g. body image, fatigue, emotional issues, mobility and hand function) were similarly described in all six diseases. However, even if the same concept was mentioned, patients' experiences were different, such as mental AND physical aspects limiting the ability to drive in patients with fibromyalgia compared with ONLY physical problems in all other diseases. Within body functions and structures, several concepts were relevant for certain conditions only. CONCLUSION: A large number of similar problems are mentioned as 'typical' by patients with different rheumatic conditions. These could probably be targeted, using a disease-specific approach, in interventions by non-physician health professionals.

Identification of essential elements of functioning in chronic widespread pain based on a statistical approach.

OBJECTIVE: This study aimed to study the most relevant International Classification of Functioning, Disability, and Health (ICF) categories for describing functioning and disability in patients with chronic widespread pain (CWP). The specific aims of the study are (1) to identify which ICF categories explain the most variance of the experience of health in CWP and (2) to compare the identified ICF categories to the ICF categories of the Brief ICF Core Set for CWP. DESIGN: The ICF categories entered in an initial regression model were selected according to their correlation with item 1 of the Medical Outcomes Survey 36-Item Short-Form Health Survey (SF-36). Based on an initial regression model, additional regression models were performed through systematically substituting the ICF categories included in the initial model with ICF categories from the same chapter with which they highly correlated. RESULTS: Eleven categories were identified. Six of them are included in the Brief ICF Core Set for CWP. CONCLUSIONS: Most of the categories identified in the regression models are similar to the domains identified in Outcome Measures in Rheumatoid Arthritis Clinical Trials workshops and are represented in the Brief ICF Core Set for CWP, either directly or in ICF categories from the same chapters. Based on the 11 identified categories, clinicians and health professionals can obtain an efficient overview regarding the level of functioning of their patients in those essential areas that best differentiate among various levels of functioning.

Spirituality and the International Classification of Functioning, Disability and Health: content comparison of questionnaires measuring mindfulness based on the International Classification of Functioning.

PURPOSE: To identify and compare the concepts contained in questionnaires measuring mindfulness using the International Classification of Functioning (ICF) as external reference. METHOD: Questionnaires which are published in peer-reviewed journals and listed in Pubmed or PsycInfo were included. The questionnaires were analysed and, using a content-analytical approach, the respective items were categorised and linked to the ICF. RESULTS: Ten questionnaires were included. Ninety-four per cent (N = 341) of the concepts could be linked to 37 different ICF categories. One hundred and seventy-one (50.1%) concepts were linked to ICF categories of the component Body Function, 74 (21.7%) to categories of the component Activity and Participation and none to categories of the component Environmental Factors. In total, 28.2% of the linked concepts belonged to Personal factors, which are not yet classified in the ICF. The questionnaires exhibited considerable differences regarding content density (i.e. the average number of concepts per item) and content diversity (i.e. the number of ICF categories per concept). CONCLUSIONS: The ICF provides an useful external reference to identify and compare the concepts contained in mindfulness questionnaires. Also, mindfulness questionnaire concepts suggest potentially useful factors for classification within the ICF.

Validation of the International Classification of Functioning, Disability and Health Core Set for chronic widespread pain from the perspective of fibromyalgia patients.

INTRODUCTION: Functioning is recognized as an important study outcome in chronic widespread pain (CWP). The Comprehensive ICF Core Set for CWP is an application of the International Classification of Functioning, Disability and Health (ICF) with the purpose of representing the typical spectrum of functioning of patients with CWP. The objective of the study was to add evidence to the validation of the Comprehensive ICF Core Set for CWP from the patient perspective. The specific aims were to explore the aspects of functioning and health important to patients with fibromyalgia, and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for CWP. METHODS: The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for qualitative data analysis. After qualitative data analysis, the identified concepts were linked to ICF categories. RESULTS: Thirty-three patients participated in six focus groups. Fifty-four ICF categories out of 67 categories of the Comprehensive ICF Core Set for CWP were reported by the patients. Forty-eight additional categories that are not covered in the Comprehensive ICF Core Set for CWP were raised. CONCLUSIONS: Most ICF categories of the existing version of the Comprehensive ICF Core Set for CWP could be confirmed from the patient perspective. However, several categories not included in the Core Set emerged and should be considered for inclusion.