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ABSTRACT: Focus group interviews were used to examine validity of the Quality of Life Scale, Swedish version (QOLS-S) for use with women with fibromyalgia. Five interviews with 18 women with fibromyalgia were completed. The opening question was "What does quality of life mean to you?" Later, participants were asked to respond to questions about the specific domains and items in the QOLS-S. The transcribed interviews were analysed, and categories were identified. Opinions concerning domains and items in the QOLS-S were linked to domains of the QOLS-S. Four categories emerged from the opening question: finances, to be an active person and participate in society, relations with others, and health. Overall, the women's perceptions of quality of life were congruent with the domains of QOLS-S. However, further attention should be given to the translation of certain items and apparent overlaps in some items indicate that they can be combined. Also, the instrument needs to be scrutinized from a cultural perspective because some items in the "social, community and civic activities" domain were not endorsed by the participants. Copyright © 2012 John Wiley & Sons, Ltd.
Occupational Therapy International 05/2012; · 0.53 Impact Factor
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ABSTRACT: Objectives: To describe employment loss in young women with newly diagnosed fibromyalgia syndrome [FMS] and to identify variables that may explain early loss of employment. Methods: In this pilot studsy, 94 young women [18–39 years old] in the United States [USA] and Sweden completed demographics, global rating scales, and standardized questionnaires, including the Fibromyalgia Impact Questionnaire, SF-36 General Health Subscale, Beck Depression Inventory, Beck Anxiety Inventory, Arthritis Self-Efficacy Scale, Arthritis Impact Measurement Scales II Social Support Subscale, and Job Flexibility Scale, three times during the first 12 to 15 months after diagnosis. Results: At the time of diagnosis, 60 percent were in paid employment [USA 71 percent, Sweden 49 percent]. When the participants entered the study, within three months of diagnosis, only 46 percent were working [USA 56 percent, Sweden 37 percent]. Twelve months later, 41 percent were working [USA 55 percent, Sweden 28 percent]. Younger age, poorer physical functioning, and lower self-efficacy for pain management along with higher symptom interference with ability to do any work, and pain severity predicted unemployment with 75 percent accuracy. Conclusions: An early and notable decrease in the percentage of young women diagnosed with FMS and working in paid employment was seen in this pilot study. Because most of the job loss was associated with FMS symptoms, a larger study of strategies to control or ameliorate these symptoms in the work setting should be undertaken.
01/2010; 13(2):31-41.
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ABSTRACT: Objectives: 1. Determine the aerobic fitness level of women with fibromyalgia; 2. Ascertain current exercise patterns; 3. Evaluate perceived exertion. Methods: Ninety-five women were tested utilizing modified Balke treadmill protocol and Gould metabolic chart. Ratings of perceived exertion [RPE] were measured [Bord, 1982] and weekly Training Index [TI] calculated [Hagberg, 1986]. Results: 1.78 [83%] were not engaging in regular exercise; 2.61 [65%] were below average aerobic fitness; 3.48 [51%] perceived themselves to be working at the expected intensity; 4.28 [29%] were unable to reach anaerobic threshold but perceived themselves to be working at a higher than expected intensity. Conclusions: 1. Most fibromyalgia patients are unfit and not engaging in regular exercise; 2. RPE is an appropriate method for monitoring intensity for only 50% of the patients tested.
01/2010; 1(3-4):191-197.
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ABSTRACT: Objectives: To characterize and compare the demographics, symptom profiles, pain coping strategies, and quality of life in three age groups of women with fibromyalgia [FMS]. Methods: Self-report questionnaires, including the Fibromyalgia Impact Questionnaire [FIQ], Beck Depression Inventory, Coping Strategies Questionnaire, and Quality of Life Scale, were filled out by 343 consecutive women who were participating in FMS treatment programs. Patients were divided into three age groups for purposes of data analysis. Results: The youngest age group had their symptoms for a significantly shorter period of time than the middle age and older age groups. Tender point pain score, the FIQ physical functioning and well-being items, and perceived ability to decrease pain were significantly worse for the youngest age group when compared to the other two groups. The youngest group had significantly higher catastrophizing scores and lower quality of life than the oldest age group. Discriminant function analysis between the youngest and oldest groups revealed that a combination of six variables: length of symptoms, quality of life, tender point pain score, morning tiredness, behavioral activity strategies, and a pain control/rational thinking factor were 84% accurate in classifying these patients into their original groups. When length of symptoms was excluded, the remaining five variables were 79% accurate in classifying the patients. Conclusions: Young women with FMS perceive the severity of FMS to be higher and respond with more distress than older women with FMS. This finding is largely independent of symptom length.
01/2010; 9(2):5-18.
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ABSTRACT: Objectives: To describe the pain-coping strategies of women with fibromyalgia [FMS]; to compare the factor structure of the Coping Strategies Questionnaire [CSQ] to other reports; and to determine whether pain-coping strategies are predictive of pain, fatigue, poor sleep., and quality of life. Methods: One hundred twenty consecutive patients with FMS who were tested prior to a six-month multidisciplinary treatment program completed the CSQ, along with several other self-report measures, a tender point examination, and syndrome/demographic information. Seventy-one patients completed the program and were retested. Results: At the pretest, FMS patients were most likely to use self-empowerment statements, ignore pain, and attempt to increase their activity level. Ninety percent used at least one catastrophizing strategy. At program completion, posttest evaluations of ability to control and decrease pain had increased significantly. Three distinct factors emerged from the analysis of the CSQ: a cognitive [COG], an active [ACT], and the well-known pain control and rational thinking [PCRT]. Pain control and rational thinking was predictive of poor sleep at pretest and pain at posttest; however, depression was most strongly predictive of all symptoms and quality of life. Conclusions: Fibromyalgia patients use a wide variety of coping strategies. In general, use of the positive strategies is associated with positive outcomes. Depression, catastrophizing, and a negative evaluation of ability to control and decrease pain are the major factors that significantly impact symptoms and quality of life.
01/2010; 5(3):5-21.
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ABSTRACT: Objective: To determine whether patients with fibromyalgia [FMS], treated in a tertiary care setting, got worse over time, remained the same, or got better. Methods: Validated self-report questionnaires and checklists were sent at two-year intervals to patients who were screened for entry into a six-month FMS treatment program. Patients were divided into subgroups based on whether they finished the program or did not enter or finish. They were followed for up to nine years. Results: The subgroup that finished the six-month program had lower Fibromyalgia Impact Questionnaire and Beck Depression Inventory and higher Quality of Life Scale scores over time than the subgroup that did not enter the program or finish. The Fibromyalgia Impact Questionnaire scores of program finishers were significantly lower at three to four years [P =. 031] and seven to nine years [P =. 001]. Beck Depression Inventory scores were significantly lower at three to four years [P =. 047]. The Quality of Life Scale scores were not significantly different at any measurement. Over the survey period, a majority of the total group rated their FMS symptoms and physical abilities as better than when they were pretested for the program. Up to 35 percent had periods of time without symptoms and nearly 50 percent rated their general health as good or excellent. A majority of patients whether they finished the program or not took medications for sleep, exercised, and used relaxation and self-talk coping strategies. Use of both pain medications and anti-depressants increased over the course of the study. Conclusions: Patients treated in a comprehensive program had consistently lower FMS impact, depression, pain, and fatigue scores over time. Patients who did not enter or complete the program were as likely take sleep medication, exercise or use self-management techniques over time but did not perceive themselves to be doing as well as those who completed the program.
01/2010; 13(1):5-14.
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ABSTRACT: People with fibromyalgia (FM) often have low insulin-like growth factor-I (IGF-I) levels and a suboptimal growth hormone (GH) response to acute exercise. As previous work had demonstrated a normalization of the acute GH response to exercise with the use of pyridostigmine (PYD), we tested the hypothesis that 6 months of PYD therapy plus supervised exercise would increase IGF-I levels.
Subjects with primary FM were randomized into 4 groups: (1) PYD/exercise; (2) PYD/diet recall; (3) placebo/exercise; and (4) placebo/diet recall. The dosing of PYD was 60 mg tid for 6 months. Resting IGF-I levels were measured at baseline and after 6 months of treatment. In addition the acute GH response to exercise at VO2 max was measured at baseline and after treatment.
A total of 165 FM subjects (mean age 49.5 yrs, 5 male) were entered and 154 (93.3%) completed the study. Six months of therapy (PYD plus exercise or exercise alone) failed to improve the IGF-I levels. The use of PYD 1 hour prior to exercise improved the acute GH response (4.54 ng/dl) compared to placebo (1.74 ng/dl) (p = 0.001) at the end of the 6-month trial. The acute GH response to exercise at baseline did not correlate with IGF-I, age, depression, medications, estrogen status, or obesity.
A combination of triweekly supervised exercise plus the daily use of PYD for 6 months failed to increase IGF-I levels in patients with FM, despite the confirmation that PYD normalizes the acute GH response to strenuous aerobic exercise.
The Journal of Rheumatology 06/2007; 34(5):1103-11. · 3.69 Impact Factor
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ABSTRACT: The major symptoms of fibromyalgia (FM)--pain, tiredness, disrupted sleep, and muscle weakness--severely impact everyday activities, including the paid work role of women who have had FM for a long time. There are no prospective studies on young and newly diagnosed women with FM. The aim of the present study was to describe and compare difficulties young and newly diagnosed women in Sweden and the United States experienced during their first year after diagnosis.
Three interviews, 6 months apart, were conducted, with 49 Swedish and 45 US women between the ages of 18 and 39. Five open-ended questions were asked concerning physical, psychological and social difficulties and limitations, and factors that increased or decreased their difficulties and limitations. At interviews 2 and 3 the women were also asked about ways of preventing their difficulties. The answers were written down and analysed by a content analysis approach.
Consistent categories of difficulties were reported: symptoms, movements, activities, moods, social network, external factors and coping strategies. More US women were working outside their homes than were their Swedish counterparts and they expressed more difficulties compared with the Swedish women.
In general, difficulties decreased and coping strategies increased over the 1-year period in both groups of newly diagnosed, young women.
Disability and Rehabilitation 11/2006; 28(19):1177-84. · 1.50 Impact Factor
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ABSTRACT: The purpose of this review was to: (1) locate all exercise treatment studies of fibromyalgia (FM) patients from 1988 through 2005, (2) present in tabular format the key details of each study and (3) to provide a summary and evaluation of each study for exercise and health outcomes researchers. Exercise intervention studies in FM were retrieved through Cochrane Collaboration Reviews and key word searches of the medical literature, conference proceedings and bibliographies. Studies were reviewed for inclusion using a standardized process. A table summarizing subject characteristics, exercise mode, timing, duration, frequency, intensity, attrition and outcome variables was developed. Results, conclusions and comments were made for each study. Forty-six exercise treatment studies were found with a total of 3035 subjects. The strongest evidence was in support of aerobic exercise a treatment prescription for fitness and symptom and improvement. In general, the greatest effect and lowest attrition occurred in exercise programs that were of lower intensity than those of higher intensity. Exercise is a crucial part of treatment for people with FM. Increased health and fitness, along with symptom reduction, can be expected with exercise that is of appropriate intensity, self-modified, and symptom-limited. Exercise and health outcomes researchers are encouraged to use the extant literature to develop effective health enhancing programs for people with FM and to target research to as yet understudied FM subpopulations, such as children, men, older adults, ethnic minorities and those with common comorbidities of osteoarthritis and obesity.
Health and Quality of Life Outcomes 02/2006; 4:67. · 2.11 Impact Factor
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Carol S Burckhardt
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ABSTRACT: To review and evaluate approaches to educating patients with fibromyalgia syndrome (FMS).
A narrative literature review was undertaken to summarize the published literature on patient education for FMS patients.
A number of studies contain specific education strategies while others are combined with exercise or movement therapies or cognitive-behavioural therapy.
Self-efficacy provides an effective theoretical model from which to understand how patients change as a result of education strategies that focus on self-management. Programmes that combine education with cognitive-behavioural techniques and exercise are most effective in enhancing self-efficacy and decreasing symptoms of FMS.
Disability and Rehabilitation 07/2005; 27(12):703-9. · 1.50 Impact Factor
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ABSTRACT: One consequence of constant widespread pain is a low quality of life. The purpose of the study was to examine whether the Quality of Life Scale, Swedish version (QOLS-S), regarded as a generic quality-of-life instrument, is a reliable and valid instrument for use in women with fibromyalgia (FM). Women with FM (n = 113) contributed data on the QOLS-S and other standardized instrument at three points in time. Internal consistency reliability estimates ranged from 0.89 to 0.92. Convergent construct validity was indicated by moderate agreement with a global life satisfaction question. Discriminant construct validity was denoted by low correlations with the physical functioning subscale of the SF-36. In a factor analysis three factors emerged: 'personal and social well-being', 'relations with others' and 'active participation'. A few of the items have high cross-loadings, and the instrument could be improved by rewording those items to more closely reflect one specific factor. Overall, these results provide evidence that the QOLS-S has acceptable validity and reliability for use in women with FM.
Scandinavian Journal of Caring Sciences 04/2005; 19(1):64-70. · 0.89 Impact Factor
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ABSTRACT: Most research and treatment of post-breast cancer chronic pain has focused on local or regional pain problems in the operated area. The purpose of this pilot study was to compare and contrast the pain characteristics, symptom impact, health status, and quality of life of post-breast cancer surgery women with regional chronic pain versus those with widespread chronic pain.
A cross-sectional, descriptive design compared two groups of women with chronic pain that began after surgery: regional pain (n = 11) and widespread pain (n = 12). Demographics, characteristics of the surgery, as well as standardized questionnaires that measured pain (Brief Pain Inventory (BPI), Short Form McGill Pain Questionnaire (MPQ-SF)), disease impact (Fibromyalgia Impact Questionnaire (FIQ), Functional Assessment of Cancer Therapy-Breast (FACT-B)), health status (Medical Outcomes Short Form (SF-36)) and quality of life (Quality of Life Scale (QOLS)) were gathered.
There were no significant differences between the groups on any demographic or type of surgery variable. A majority of both groups described their pain as aching, tender, and sharp on the MPQ-SF. On the BPI, intensity of pain and pain interference were significantly higher in the widespread pain group. Differences between the two groups reached statistical significance on the FIQ total score as well as the FACT-B physical well-being, emotional well-being and breast concerns subscales. The SF-36 physical function, physical role, and body pain subscales were significantly lower in the widespread pain group. QOLS scores were lower in the widespread pain group, but did not reach statistical significance.
This preliminary work suggests that the women in this study who experienced widespread pain after breast cancer surgery had significantly more severity of pain, pain impact and lower physical health status than those with regional pain.
Health and Quality of Life Outcomes 02/2005; 3:30. · 2.11 Impact Factor
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Arthritis & Rheumatism 11/2004; 51(5):864-7. · 7.87 Impact Factor
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Arthritis & Rheumatism 10/2003; 49(S5):S96 - S104. · 7.87 Impact Factor
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ABSTRACT: The Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970's, has been adapted for use in chronic illness groups. Evidence for reliability and validity has been published over the years for both English and translations. This paper presents further evidence of construct validity for persons with chronic conditions as well as across two languages, and gender.
A sample of 1241 chronically ill and healthy adults from American and Swedish databases was used to generate factor analyses for both the 15-item original QOLS and the 16-item chronic illness adaptation.
Analysis of the data suggested that the QOLS has three factors in the healthy sample and across chronic conditions, two languages and gender. Factors that could be labeled (1) Relationships and Material Well-Being, (2) Health and Functioning, and (3) Personal, Social and Community Commitment were identified.
The QOLS is a valid instrument for measuring domains of quality of life across diverse patient groups.
Health and Quality of Life Outcomes 02/2003; 1:59. · 2.11 Impact Factor
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ABSTRACT: The Quality of Life Scale (QOLS), created originally by American psychologist John Flanagan in the 1970's, has been adapted for use in chronic illness groups. This paper reviews the development and psychometric testing of the QOLS. A descriptive review of the published literature was undertaken and findings summarized in the frequently asked questions format. Reliability, content and construct validity testing has been performed on the QOLS and a number of translations have been made. The QOLS has low to moderate correlations with physical health status and disease measures. However, content validity analysis indicates that the instrument measures domains that diverse patient groups with chronic illness define as quality of life. The QOLS is a valid instrument for measuring quality of life across patient groups and cultures and is conceptually distinct from health status or other causal indicators of quality of life.
Health and Quality of Life Outcomes 02/2003; 1:60. · 2.11 Impact Factor
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Carol S Burckhardt
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ABSTRACT: Clinicians using the results of the extant research base can take an optimistic view of the role of nonpharmacologic treatment strategies for fibromyalgia. There were no negative outcomes in any of the reviewed studies, although in a few studies the experimental treatment did not prove to be more effective than the attention control. Rather than viewing this negatively, one could look more closely at the attention control groups and attempt to better understand what they contained that worked as an active treatment. A number of trials include a follow-up component and all but one of them find maintenance of at least one outcome change. Maintenance of changes is more likely to occur when the patient continues to participate in the experimental activity long-term. Patients especially need strategies that help them continue in exercise regimens. Unlike cognitive skills strategies that once learned are likely to become part of a person's coping repertoire, both exercise and behavioral strategies, like progressive muscle relaxation, need to be performed on a consistent basis in order to have their effect. The goals of increased self-efficacy, symptom reduction, increased functional status and quality of life along with decreased inappropriate use of health care resources are realistic when patients persevere in their use of strategy combinations and receive support from their providers.
Rheumatic Disease Clinics of North America 06/2002; 28(2):291-304. · 3.02 Impact Factor
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ABSTRACT: To determine the effectiveness of a muscle strengthening program compared to a stretching program in women with fibromyalgia (FM).
Sixty-eight women with FM were randomly assigned to a 12 week, twice weekly exercise program consisting of either muscle strengthening or stretching. Outcome measures included muscle strength (main outcome variable), flexibility, weight, body fat, tender point count, and disease and symptom severity scales.
No statistically significant differences between groups were found on independent t tests. Paired t tests revealed twice the number of significant improvements in the strengthening group compared to the stretching group. Effect size scores indicated that the magnitude of change was generally greater in the strengthening group than the stretching group.
Patients with FM can engage in a specially tailored muscle strengthening program and experience an improvement in overall disease activity, without a significant exercise induced flare in pain. Flexibility training alone also results in overall improvements, albeit of a lesser degree.
The Journal of Rheumatology 06/2002; 29(5):1041-8. · 3.69 Impact Factor
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ABSTRACT: Objective. Fibromyalgia is a common syndrome of musculoskeletal pain and fatigue. Lacking distinctive tissue or laboratory correlations, it has often been considered a form of “psychogenic rheumatism.” In the present study, the notion that the stage-4 sleep anomaly typically seen in the fibromyalgia syndrome may disrupt growth hormone secretion was tested. Because growth hormone has a very short half-life, serum levels of somatomedin C were measured; somatomedin C is the major mediator of growth hormone's anabolic actions and is a prerequisite for normal muscle homeostasis.Methods. Serum levels of somatomedin C were measured in 70 female fibromyalgia patients and 55 healthy controls, using a peptide-specific radioimmunoassay.Results. Significantly lower levels of somatomedin C were observed in the fibromyalgia patients compared with controls (mean ± SD 124.7 ± 47 ng/ml versus 175.2 ± 60 ng/ml; P = 0.000001). These results could not be explained by concomitant therapy or by weight, and in a subset of 21 patients in whom this was investigated, there was no correlation with various indices of disease activity.Conclusion. These findings indicate that there is a distinctive disruption of the growth hormone-somatomedin C neuroendocrine axis in a majority of fibromyalgia patients. It is hypothesized that this abnormality may explain the link between disturbed sleep and predisposition to muscle pain.
Arthritis & Rheumatism 09/1992; 35(10):1113 - 1116. · 7.87 Impact Factor
