quality of life – Page 8 – American ME and CFS Society

Subjective quality of life in patients with chronic fatigue syndrome

Abstract:

The aim of this study was to (1) assess Subjective Quality of Life (SQOL) of patients with Chronic Fatigue Syndrome (CFS) using a generic concept and to compare the findings with those in groups with mental disorders and healthy subjects, and (2) investigate whether and, if so, to what extent socio-demographic and clinical variables predict SQOL in CFS patients.

Seventy-three patients diagnosed with CFS were randomly selected and interviewed from two specialised clinics. CFS was diagnosed using the Oxford Criteria. SQOL was assessed on the Manchester Short Assessment of Quality of Life (MANSA) and Health-Related Quality of Life (HRQOL) on the Medical Outcome Study Short-Form 36 (MOS) SF-36. A battery of mood and symptom questionnaires, including the Symptom Checklist Questionnaire (SCL-90-R), was administered to assess various aspects of symptomatology as potential predictor variables.

Multiple regression analyses were conducted to identify predictors of SQOL. Overall, SQOL was low in CFS patients and less favourable than in groups with mental disorders and healthy subjects. Satisfaction was particularly low with life as a whole, leisure activities and financial situation. Whilst SQOL was only moderately correlated with HRQOL, the SCL-90-R score, especially SCL-90-R Depression scale score, was the best predictor of SQOL explaining 35% of the variance. HRQOL and generic SQOL appear distinct despite some overlap.

The findings underline that SQOL is significantly disrupted in CFS patients. Depressive symptoms are statistically the strongest ‘predictor’ of SQOL, although the direction of the relationship is not established. These data suggest that treatment of depression associated with CFS, regardless of causation, could help to improve SQOL in CFS patients.

Source: Rakib A, White PD, Pinching AJ, Hedge B, Newbery N, Fakhoury WK, Priebe S. Subjective quality of life in patients with chronic fatigue syndrome. Qual Life Res. 2005 Feb;14(1):11-9. http://www.ncbi.nlm.nih.gov/pubmed/15789937

Chronic fatigue syndrome: traditional and community-based approaches to rehabilitation

Abstract:

Chronic fatigue syndrome (CFS) is a controversial condition defined by 6 months or more of unexplained fatigue, and at least four out of eight cognitive and physical symptoms. Over the past 2 decades, CFS has been the subject of significant debate regarding its definition, cause and recommended treatment. Because a cure for the syndrome has not yet been located, efforts to improve functioning and overall quality of life through rehabilitation represent the most practised form of treatment to date.

However, controversy remains as to which approach to rehabilitation is most effective for individuals with CFS. Interventions which take place within real-world environments and utilise community-based organizations such as centres for independent living offer a newly explored means of support and rehabilitation.

The present paper reviews a variety of approaches to rehabilitation for individuals with CFS, describing their applications with different types of patients, and providing critical commentary on the research methodologies used to evaluate them. Innovative community-based rehabilitation programmes and their outcomes are described as an alternative with some promise that may compliment more traditional approaches.

Source: Taylor RR. Chronic fatigue syndrome: traditional and community-based approaches to rehabilitation. Health Soc Care Community. 2004 May;12(3):171-85. http://www.ncbi.nlm.nih.gov/pubmed/19777707

Quality of life and symptom severity for individuals with chronic fatigue syndrome: findings from a randomized clinical trial

Abstract:

OBJECTIVE: Chronic fatigue syndrome is a profoundly disabling condition characterized by severe, unrelenting fatigue and a number of other physical and cognitive symptoms. Currently, there is no cure or widely accepted treatment for chronic fatigue syndrome, and few rehabilitation programs exist to address quality of life issues in chronic fatigue syndrome. In the present randomized clinical trial, the effects of an integrative, consumer-driven rehabilitation program on quality of life and symptom severity for individuals with chronic fatigue syndrome were examined.

METHOD: Forty-seven participants were randomly assigned to either an immediate program group (n = 23) or a delayed program control group (n = 24) and assessed with the Chronic Fatigue Syndrome Symptom Rating Scale and the Quality of Life Index before the program, after program participants completed the group phase, and after program participants completed the one-on-one phase. It was hypothesized that the program would lead to improvements in quality of life and an overall reduction in symptom severity.

RESULTS: Linear growth models were estimated comparing program and control conditions over time using random-effects regression analyses. Significant condition by time interactions were observed for the main outcomes of symptom severity and overall quality of life. Effect sizes for these interactions involving symptom severity (Cohen’s d = 0.71) and overall quality of life (Cohen’s d = .66) were moderate.

CONCLUSIONS: Findings indicate that consumer driven programs such as this one can have a positive impact on symptom severity and quality of life over time for individuals with chronic fatigue syndrome.

Source: Taylor RR. Quality of life and symptom severity for individuals with chronic fatigue syndrome: findings from a randomized clinical trial. Am J Occup Ther. 2004 Jan-Feb;58(1):35-43. http://www.ncbi.nlm.nih.gov/pubmed/14763634

Medication use by persons with chronic fatigue syndrome: results of a randomized telephone survey in Wichita, Kansas

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is characterized by profound fatigue, which substantially interferes with daily activities, and a characteristic symptom complex. Patients use a variety of prescribed and self-administered medications, vitamins, and supplements for relief of their symptoms. The objective of this study was to describe utilization of medications and supplements by persons with CFS and non-fatigued individuals representative of the general population of Wichita, Kansas.

METHODS: We used a random-digit dialing telephone survey to identify persons with CFS in the general population of Wichita, Kansas. Subjects who on the basis of telephone interview met the CFS case definition, and randomly selected non-fatigued controls, were invited for a clinic evaluation that included self-reported use of medications and supplements. Sex-adjusted odds ratios and 95% confidence interval were estimated to measure the association between CFS and use of various drug categories.

RESULTS: We clinically evaluated and classified 90 subjects as CFS during the study and also collected clinical data on 63 who never described fatigue. Subjects with CFS reported using 316 different drugs compared to 157 reported by non-fatigued controls. CFS subjects were more likely to use any drug category than controls (p = 0.0009). Pain relievers and vitamins/supplements were the two most common agents listed by both groups. In addition CFS persons were more likely to use pain relievers, hormones, antidepressants, benzodiazepines, gastro-intestinal, and central nervous system medications (Sex-adjusted odds ratios range = 2.97 – 12.78).

CONCLUSION: Although the reasons for increased use of these agents were not elucidated, the data indicated the CFS patients’ need for symptom relief.

Source: Jones JF, Nisenbaum R, Reeves WC. Medication use by persons with chronic fatigue syndrome: results of a randomized telephone survey in Wichita, Kansas. Health Qual Life Outcomes. 2003 Dec 2;1:74. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC293479/ (Full article)

Caring for a relative with chronic fatigue syndrome: difficulties, cognition and acceptance over time

Abstract:

The present study explored the difficulties experienced by carers of chronic fatigue syndrome (CFS) sufferers, their cognitions, and their efforts to accept the illness. Semi-structured interviews were conducted with 17 carers to study these issues, retrospectively, over three stages: before the diagnosis of CFS, shortly after the diagnosis, and at present.

Surprisingly, the results suggested that carers, several of them absent from home during the day, felt that their lives were only minimally constrained by the illness. Nevertheless, all carers reported specific coping efforts to manage both the illness and their own distress, and indicated that they learned to accept the illness over time. However, acceptance appeared to be a form of resignation rather than a positive appreciation of the illness.

In light of the uncertainties surrounding the origin of CFS and carers’ apparent confusion, the results obtained in the present study are significant in that they increase our understanding of CFS carers’ quality of life, their efforts to cope with the illness, and the physical and emotional help they may provide to the sufferer. Such information can be usefully employed in the increasing development of counselling interventions and instrumental support networks that involve both sufferers and their carers.

Source: Ax S, Gregg VH, Jones D. Caring for a relative with chronic fatigue syndrome: difficulties, cognition and acceptance over time. J R Soc Promot Health. 2002 Mar;122(1):35-42. http://www.ncbi.nlm.nih.gov/pubmed/11989141

Health-related quality of life in patients with chronic fatigue syndrome: an international study

Abstract:

OBJECTIVE: Chronic fatigue syndrome (CFS) has been reported worldwide. Our objectives were to determine if patients from different countries have similar profiles of impairments.

METHODS: Health-related quality of life (HRQoL) was assessed in 740 CFS patients in the US, 82 in the UK, and 65 in Germany using the eight subscales of the Short-Form General Health Survey (SF-36). To examine the internal structure, factor analyses were performed.

RESULTS: Overall, there was a remarkable similarity in HRQoL among all CFS patients, regardless of location. Patients scored two to three standard deviations below normal on six subscales and one standard deviation below normal on the other two subscales. Factor analysis suggested a two-factor model where the same six subscales constitute the first factor and the two others the second factor.

CONCLUSION: HRQoL is poor in CFS patients from three countries. This study is a first step towards conducting further comparative cross-cultural and international studies.

Source: Hardt J, Buchwald D, Wilks D, Sharpe M, Nix WA, Egle UT. Health-related quality of life in patients with chronic fatigue syndrome: an international study. J Psychosom Res. 2001 Aug;51(2):431-4. http://www.ncbi.nlm.nih.gov/pubmed/11516765

Chronic fatigue syndrome: a woman’s dilemma

Abstract:

Chronic Fatigue Syndrome (CFS) is an illness characterized by fatigue with varying levels of disability. According to the Centers for Disease Control (CDC) there are 2 to 5 million people in the United States who suffer from CFS and a disproportionate number are women.

There are many theories of etiology of the condition and controversy has surrounded recommendations for diagnosis and treatment. CFS can mimic other diseases and women are doubly affected since many have comorbid conditions. While diagnoses and treatment are critical to the health of women, having the disease and coping with the symptoms may have a greater impact on their well-being and quality of life.

The authors report qualitative data describing the experience of having CFS (N = 22) and quantitative responses of 42 CFS sufferers reporting psychosocial factors. The psychosocial factors were measured by the Derogatis Stress Profile (DSP), Spielberger Trait-Anger Scale, Ways of Coping Survey, Profile of Moods States (POMS) Survey, and the Perceived Stress Scale. The findings indicate that CFS changes the lives of women who suffer with the disease and disrupts their relationships, careers, and perceptions of themselves.

Source: Tuck I, Wallace D. Chronic fatigue syndrome: a woman’s dilemma. Health Care Women Int. 2000 Jul-Aug;21(5):457-66. http://www.ncbi.nlm.nih.gov/pubmed/11261112

Chronic fatigue syndrome, chronic fatigue, and psychiatric disorders: predictors of functional status in a national nursing sample

Abstract:

Members of 2 nurses’ associations (N = 71) were assessed using 2 mail questionnaires, a telephone questionnaire, the Diagnostic Interview Schedule, and medical records. Physicians reviewed participants to determine whether they met current criteria for chronic fatigue syndrome(CFS). Stepwise multivariate regression analyses were conducted to identify predictors of functional status scores.

Impairments in physical, role, and social functioning increased as fatigue severity increased. Bodily pain increased as fatigue severity increased, and ratings of overall health increased as severity of fatigue decreased. Nurses with a current psychiatric diagnosis reported more impairments in emotional functioning than nurses with a lifetime diagnosis or no psychiatric diagnosis.

Quality of life decreased as fatigue severity increased. Nurses with fatigue not meeting CFS criteria reported better quality of life than those with CFS or medical exclusions.

Source: Wagner-Raphael LI, Jason LA, Ferrari JR. Chronic fatigue syndrome, chronic fatigue, and psychiatric disorders: predictors of functional status in a national nursing sample. J Occup Health Psychol. 1999 Jan;4(1):63-71. http://www.ncbi.nlm.nih.gov/pubmed/10100114

Adaptive tasks, coping and quality of life of chronically ill patients: the cases of Parkinson’s disease and chronic fatigue syndrome

Abstract:

This article is a report of a larger study on the relationship between adaptive tasks, coping and quality of life, taking Parkinson’s disease and chronic fatigue syndrome (CFS) as examples. The concept of adaptive tasks or disease-related stressors testing the adaptive capacities of chronically ill patients (N=134) was explored by applying the method of concept mapping.

Results show that patients both with Parkinson’s disease and with CFS generally refer to the same themes when asked for the adaptive tasks their disease brings about. However, the actual contents of these adaptive tasks differ as well as their impact on coping and quality of life. In the case of patients with Parkinson’s disease, objective disease characteristics appear to be more important in predicting quality of life than in the case of patients with CFS, whose evaluation of adaptive tasks is predictive of quality of life.

Source: De Ridder DT, Schreurs KM, Bensing JM. Adaptive tasks, coping and quality of life of chronically ill patients: the cases of Parkinson’s disease and chronic fatigue syndrome. J Health Psychol. 1998 Jan;3(1):87-101. Doi: 10.1177/135910539800300107. http://www.ncbi.nlm.nih.gov/pubmed/22021345