OBJECTIVE: To investigate the appreciation of written education about pain neurophysiology in patients with fibromyalgia (FM) and its effects on illness perceptions and perceived health status.METHODS: A booklet explaining pain neurophysiology was sent to participants with FM. Appreciation was assessed with 10 questions addressing relevance (0-30) and reassurance (0-30). Illness perceptions, catastrophizing and health status were measured with the Revised Illness Perception Questionnaire (IPQ-R), the Pain Catastrophizing Scale (PCS) and the Fibromyalgia Impact Questionnaire (FIQ) at baseline (T0), after a 2-week control period (T1) and 6 weeks after the intervention (T2).RESULTS: Forty-one patients participated. Mean (SD) scores for relevance and reassurance were 21.6 (5.6) and 18.7 (5.7), respectively. Only illness coherence, emotional representations, pain and fatigue changed significantly between T0 and T2. Correlations between appreciation and changes in outcomes ranged between r=0.00 and r=0.34.CONCLUSIONS: Although a majority of subjects appreciated the written information, it did not have clinically relevant effects on illness perceptions, catastrophizing or impact of FM on daily life.PRACTICE IMPLICATIONS: Written education about pain neurophysiology is inadequate toward changing illness perceptions, catastrophizing or perceived health status of participants with FM; education should be incorporated into a broader multidisciplinary self-management program.
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BACKGROUND: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available.OBJECTIVE: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases.DESIGN: A qualitative method.METHODS: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set.RESULTS: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the "Participation" and "Environmental Factors" components.CONCLUSION: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs.CLINICAL REHABILITATION IMPACT: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.
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