Carol S. Burckhardt

The Quality of Life Scale (QOLS): Reliability, Validity, and Utilization

The Quality of Life Scale (QOLS), created originally by American psychologist John Flanagan in the 1970s, 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.

A comprehensive review of 46 exercise treatment studies in fibromyalgia (1988-2005).

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.

A comparison of the SF‐36 and Nottingham Health Profile in patients with chronic neuropathic pain

The aim of this study was to evaluate and compare the psychometric properties of two generic health‐related quality of life (HRQoL) instruments, the Short Form Health Survey (SF‐36) and the Nottingham Health Profile (NHP) in a group of patients with chronic peripheral neuropathic pain (PNP). The sample consisted of 126 adults (56 men and 70 women) with PNP following a lesion of a peripheral nerve, spinal nerve or nerve root or patients with post‐herpetic neuralgia. The battery of tests included visual analogue scales (VASs) for pain assessment and global rating of health and verbal rating scales of pain and other symptoms, as well as patient descriptors.

The use of the McGill Pain Questionnaire in assessing arthritis pain

&NA; Responses to the McGill Pain Questionnaire (MPQ) were described in two samples of arthritis patients, an inpatient group (n = 94) and an outpatient group (n = 94). Subjects in both samples used a similar set of sensory words to describe their arthritis pain. The inpatient sample, however, used affective words of higher intensity than the outpatient sample. Because the two samples came from a common population, they were combined and exploratory factor analyses using principal component analysis with first oblique and then orthogonal rotations were performed. The analysis yielded 6 factors that accounted for 58.3% of the variance in the sample. Clear sensory factors, an affective factor and an evaluative factor were identified. The study provides preliminary evidence that a substantial affective dimension underlies the MPQ responses of arthritis patients and confirms the parsimony of a 3‐factor solution for the questionnaire.

Impact of fibromyalgia on everyday life: a study of women in the USA and Sweden

The study investigated how 39 women with fibromyalgia (FM), living in two countries (USA or Sweden), report the consequences of fibromyalgia on everyday life activities. Data were collected using questionnaires, diaries and interviews. The result showed that the impact on everyday life was considerable. The majority of the women experienced pain and fatigue for more than 90% of their time awake. There were no significant differences between the national groups in time use, problems with everyday activities, or quality of life. Overall, the differences between individuals were greater than between the national groups. The majority of the employed patients in the Swedish group had reduced their working time, while the employed patients in the USA group worked mainly full-time. Patients who were able to reduce their working hours to fit their perceived capacity were less exhausted during their leisure, and reported higher satisfaction with daily activities.

The Flanagan Quality of Life Scale: Evidence of Construct Validity

BackgroundThe Quality of Life Scale (QOLS), developed originally by John Flanagan in the 1970s, 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.MethodsA 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.ResultsAnalysis 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.ConclusionsThe QOLS is a valid instrument for measuring domains of quality of life across diverse patient groups.

Effects of chronic widespread pain on the health status and quality of life of women after breast cancer surgery

BackgroundMost 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.MethodsA 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.ResultsThere 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.ConclusionThis 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.

A Six-Month Randomized Controlled Trial of Exercise and Pyridostigmine in the Treatment of Fibromyalgia

OBJECTIVE A subset of fibromyalgia (FM) patients have a dysfunctional hypothalamic-pituitary-insulin-like growth factor 1 (IGF-1) axis, as evidenced by low serum levels of IGF-1 and a reduced growth hormone (GH) response to physiologic stimuli. There is evidence that pyridostigmine (PYD) improves the acute response of GH to exercise in FM patients. The purpose of this study was to evaluate the clinical effectiveness of 6 months of PYD and group exercise on FM symptoms. METHODS FM patients were randomized to 1 of the following 4 groups: PYD plus exercise, PYD plus diet recall but no exercise, placebo plus exercise, and placebo plus diet recall but no exercise. The primary outcome measures were the visual analog scale (VAS) score for pain, tender point count, and total myalgic score. Secondary outcome measures were the total score on the Fibromyalgia Impact Questionnaire (FIQ) and FIQ VAS scores for individual symptoms (fatigue, poor sleep, stiffness, and anxiety), as well as quality of life (QOL) and physical fitness (lower body strength/endurance, upper and lower body flexibility, balance, and time on the treadmill). RESULTS A total of 165 FM patients completed baseline measurements; 154 (93.3%) completed the study. The combination of PYD and exercise did not improve pain scores. PYD groups showed a significant improvement in sleep and anxiety in those who completed the study and in QOL in those who complied with the therapeutic regimen as compared with the placebo groups. Compared with the nonexercise groups, the 2 exercise groups demonstrated improvement in fatigue and fitness. PYD was generally well tolerated. CONCLUSION Neither the combination of PYD plus supervised exercise nor either treatment alone yielded improvement in most FM symptoms. However, PYD did improve anxiety and sleep, and exercise improved fatigue and fitness. We speculate that PYD may have improved vagal tone, thus benefiting sleep and anxiety; this notion warrants further study.

Nonpharmacologic management strategies in fibromyalgia

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 persons 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.

Quality of life of women with systemic lupus erythematosus or rheumatoid arthritis: Domains of importance and dissatisfaction

The aim of this study was to increase understanding of the domains of life that are important to Swedish women with chronic rheumatic disease and to describe their dissatisfaction with these domains. Fifty women with Systemic Lupus Erythematosus (SLE) and 50 with Rheumatoid Arthritis (RA) were interviewed by telephone regarding their quality of life using five open-ended questions. Content analysis of their responses revealed nine categories: Health/wellness, Family/friends, Work, House/home/living environment, Social support/functional services, Hobbies/cultural activities, Sufficient income, Independence, Integrity/identity. Areas of importance correspond closely to those areas with which they were most dissatisfied. Although the domains identified in both groups were the same, SLE patients expressed more dissatisfaction with their perceived control over their bodies and understanding about their condition on the part of physicians and people in general. RA patients were more dissatisfied with areas of their lives that threatened their independence. Health care providers should be aware of these areas of dissatisfaction so that they can plan strategies to maximize patient quality of life.