The social network characteristics of fibromyalgia patients compared with healthy controls.

OBJECTIVE: To assess structural social network characteristics and perceived loneliness in fibromyalgia syndrome (FMS) patients and healthy controls. METHODS: A cross-sectional, retrospective, case-control design was employed using a structured interview and a self-report questionnaire. We studied 25 female FMS patients and 25 matched healthy female controls. RESULTS: FMS patients had statistically significantly (P < 0.05) more intimate friends (mean 4.5) and more health care providers (mean 1.5) than did controls (2.3 and 0.0, respectively). The FMS patients more often initiated the contact with family members (mean 2.1) than did controls (mean 0.8). FMS patients did not perceive themselves as lonelier than controls perceived themselves. While there was a significant negative correlation between loneliness and social network variables among the controls, this relationship was not significant among the FMS patients. Among the patients, there was a strong correlation between the total social network size and the number of intimate friends, whereas in controls, the mean number of acquaintances was strongly correlated with the total network size. CONCLUSION: Compared to healthy controls, the social networks of FMS patients presented more linkages with intimate friends, family members, and health care providers. The lack of correlation between loneliness and social network variables for FMS patients is not what might be expected from social support theory. The assessment of structural social network characteristics along with social support variables may add to our understanding of the social functioning of FMS patients.

Patient utilities in fibromyalgia and the association with other outcome measures.

OBJECTIVE: To compare in patients with fibromyalgia (FM) utilities derived by rating scale and standard gamble methods; to gain insight into construct validity by relating utility values to other outcome measures; to assess the sensitivity to change of utilities. METHODS: A total of 73 patients with FM were randomized into one of 3 groups: low impact fitness training, biofeedback, or controls. At baseline and after 6 mo the Maastricht Utility Measurement Questionnaire was applied. By means of both the rating scale and standard gamble method patients were asked to value their own health status. Construct validity of patient utility measurements was evaluated by Spearman correlation and multiple regression of baseline values with pain, stiffness, patient's global assessment, Sickness Impact Profile (SIP), modified Health Assessment Questionnaire and Arthritis Impact Measurement Scale (AIMS). Sensitivity to change was assessed against changes in these outcomes. RESULTS: Rating scale utilities correlated significantly (p < 0.05) with patient's global assessment (rs = 0.53), pain (rs = -0.47), SIP (rs = -0.43), and with 9 of 11 dimensions of the AIMS (rs ranging from 0.23 to 0.62). Standard gamble utilities correlated significantly with mobility, pain, and arthritis impact of the AIMS scale (rs from 0.22 to 0.36) and with pain by visual analog scale (rs = -0.24) and patient's global assessment (rs = 0.32). Multiple regression analysis showed that patient's global assessment explained 41% (rating scale) and 10% (standard gamble) of total variance in baseline utilities. Also, 16% of the variance in change in rating scale utility values was explained by changes in patient's global assessment. In contrast, variance of changes in standard gamble utility values was not explained significantly by changes in other disease outcomes. CONCLUSION: Rating scale utilities correlated more strongly with disease outcome measures than standard gamble utilities. Also, construct validity for the rating scale was better than for the standard gamble. In FM, utility measurement is sensitive to the method chosen to elicit patient priorities.

Problem elicitation to assess patient priorities in ankylosing spondylitis and fibromyalgia.

OBJECTIVE: To elicit patient priorities as outcome measures in ankylosing spondylitis (AS) and fibromyalgia (FM); to relate these measures to other outcomes; to assess construct validity and sensitivity to change of the problem elicitation technique (PET) questionnaire. METHODS: One hundred thirty-four patients with AS were randomly allocated to weekly sessions of group physical therapy or daily exercises at home, whereas 73 patients with FM were randomized into one of 3 groups (low impact fitness, biofeedback, controls). The PET questionnaire was applied by trained interviewers at baseline and at 6 (FM) and 9 (AS) month followup. A PET score was calculated at each assessment. Construct validity of the PET was assessed by correlation and multiple regression of baseline values with other disease outcomes (pain, stiffness, patient's global assessment, Sickness Impact Profile (SIP), Health Assessment Questionnaire (HAQ), Arthritis Impact Measurement Scale (AIMS), patient utilities). Sensitivity to change of PET was assessed against changes in these outcomes and by comparing the efficiency of the PET with other outcomes. RESULTS: Patients with FM identified more problems (mean 6.8) than patients with AS (mean 4.4). Moreover, more patients with AS than with FM were unable to identify any problem at baseline (10% compared to 1%). The PET score improved from 14.9 to 11.3 (p = 0.0001) in patients with AS but did not change from 21.8 to 21.1 (p = 0.24) in patients with FM. Construct validity testing of the PET score showed statistically significant (p < 0.05) correlations with AIMS, utilities, SIP, HAQ, pain, stiffness, and patient's global health in both groups of patients (r varying from 0.22 to 0.66). By multiple regression pain explained 29% of the variance in PET scores among patients with AS. In FM patient global assessment accounted for 39% of total variance of PET scores, whereas pain explained another 15%. Changes in PET scores correlated significantly (p < 0.05) with changes in AIMS, utilities, pain, stiffness, and patient global health in both AS and FM (r varying from 0.22 to 0.51). Some 6% of the variance in changes in PET scores was explained by changes in pain in patients with AS and 35% by changes in pain and subjective health in patients with FM. Assessment of sensitivity to change revealed that efficiency of the PET score was 0.6 in patients with AS and 0.09 in those with FM. Compared to other outcomes this was reasonable in patients with AS but low in those with FM. CONCLUSION: Obtaining patient priorities was generally feasible. In both groups of patients construct validity of the PET questionnaire was satisfactory. The PET was much more sensitive to change in patients with AS than in patients with FM.

Social network characteristics in fibromyalgia or rheumatoid arthritis.

PURPOSE: To describe trends in the personal social network characteristics of the fibromyalgia patients compared with the network of patients with another chronic disorder such as rheumatoid arthritis (RA). METHODS: A structured interview was applied to 10 fibromyalgia patients and 10 matched RA patients. RESULTS: The networks of the 10 fibromyalgia and 10 RA patients were comparable in most respects, namely: the small number of intimate friends, the reliance for support on the spouse and the physician, and the relative lack of new social contacts. Furthermore, the fibromyalgia networks were closed networks within a small geographic area. These networks lacked initiative to establish and maintain relations, and can hardly fulfill the patients' psychosocial needs. CONCLUSION: Based on small numbers, the study provides some evidence that social networks of patients with fibromyalgia are more restricted than those of RA patients. Further studies should include larger numbers of patients to clarify cause and effect relationships and to suggest new directions in the treatment of chronic disorders such as fibromyalgia.