quality of life – Page 7 – American ME and CFS Society

Cognitive behavior therapy in patients with chronic fatigue syndrome: the role of illness acceptance and neuroticism

Abstract:

OBJECTIVE: Increasing the quality of life (QoL) of patients with chronic fatigue is challenging because recovery is seldom achieved. Therefore, it is important to identify processes that improve QoL. This study examined the extent of improvement related to cognitive behavior group therapy (CBT), and whether improvement is affected by initial levels of acceptance and neuroticism.

METHODS: Eighty CFS patients followed CBT, and self-reported (pre-post design) on mental and physical QoL (MQoL and PQoL), fatigue, acceptance, and neuroticism. The extent of improvement was analyzed using t-tests, effect sizes, and clinically significant change criteria. Whether acceptance and neuroticism at baseline predicted changes was analyzed by means of correlation and regression analyses.

RESULTS: Significant improvement was found for all variables. The effect size for MQoL and PQoL was small; for acceptance and fatigue, effect size was moderate. About 20% (MQoL) to 40% (fatigue) of the participants clinically improved. Pre-treatment level of acceptance was negatively correlated with changes in MQoL, not with PQoL changes. Neuroticism pre-treatment was positively related with MQoL changes. Regression analysis showed an effect of acceptance on changes in MQoL beyond the effect of neuroticism.

CONCLUSIONS: Although CBT is an evidence-based treatment, the sizes of the effects are often small regarding QoL. Our study also revealed small effect sizes. Our study showed that patient characteristics at baseline were significantly associated with MQoL outcome; indicating that CFS patients with high neuroticism or with a low acceptance show more improvement in MQoL. We propose to specifically target acceptance and neuroticism before treatment in order to maximize clinical relevance.

Source: Poppe C, Petrovic M, Vogelaers D, Crombez G. Cognitive behavior therapy in patients with chronic fatigue syndrome: the role of illness acceptance and neuroticism. J Psychosom Res. 2013 May;74(5):367-72. doi: 10.1016/j.jpsychores.2013.02.011. Epub 2013 Mar 25. https://www.ncbi.nlm.nih.gov/pubmed/23597322

A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample

Abstract:

BACKGROUND: Few studies focus on cross-cultural differences in Chronic fatigue syndrome (CFS).

PURPOSE: This study aimed to (1) compare fatigue severity and impairment, somatic complaints, psychological distress, and quality of life (QoL) in a population of Portuguese and Dutch patients; (2) explore the differential contribution of behavioral and cognitive determinants of fatigue severity; and (3) investigate the relation between fatigue severity and somatic complaints on one hand and QoL on the other in both populations.

METHOD: Eighty-five female patients from Portugal (Mean age = 47.54) and 167 female CFS patients from The Netherlands (Mean age = 44.93) participated in the study. All participants were surveyed for demographic and clinical characteristics, fatigue severity, somatic symptoms, psychological distress, (physical and psychological) QoL, physical activity, behavior regulation patterns, and illness representations.

RESULTS: Cross-cultural differences were found in relation to working status, duration of fatigue symptoms, psychological distress, somatic complaints, and psychological QoL. Although behavioral characteristics and illness representations were significantly associated with fatigue severity in both Portuguese and Dutch patients, there were important differences in the determinants of CFS. Moreover, higher levels of fatigue and severity of other somatic complaints were related to poor QoL.

CONCLUSIONS: These findings show cross-cultural similarities and differences in clinical characteristics and psychological determinants of CFS that are important in view of diagnosis and treatment.

Source: Marques M, De Gucht V, Leal I, Maes S.A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample. Int J Behav Med. 2013 Jun;20(2):229-38. doi: 10.1007/s12529-012-9265-y. https://www.ncbi.nlm.nih.gov/pubmed/22972378

The occupational and quality of life consequences of chronic fatigue syndrome/myalgic encephalomyelitis in young people

Abstract:

INTRODUCTION: Chronic fatigue syndrome, termed myalgic encephalomyelitis in the United Kingdom (CFS/ME), is a debilitating condition involving severe exhaustion, cognitive difficulties, educational and vocational losses, and disruption of social activities and relationships. CFS/ME may affect volition (that is, value, interest and sense of competence).

PURPOSE: To test Model of Human Occupation (MOHO) concepts by comparing young people with and without CFS/ME in terms of occupational participation, volition and health-related quality of life during infection and over time.

METHOD: Three hundred and one people (12-18 years old) diagnosed with glandular fever were evaluated at the time of acute infection (baseline). Six months following diagnosis, 39 of them met the criteria for CFS/ME. A further 39 who recovered were randomly selected and matched to CFS/ME participants. Both groups were re-evaluated at 12 months and 24 months. The Occupational Self Assessment and the Child General Health Questionnaire were used to compare occupational participation.

RESULTS: Those with CFS/ME reported lower levels of perceived competency, more difficulties with physical functioning and poorer general health status than those who recovered.

CONCLUSION: Those with CFS/ME report lower perceived competency, and compromises in physical functioning, school performance, social activities, emotional functioning and general health. This supports the MOHO assertion that impairments affect volition and quality of life.

Source: Taylor RR, O’Brien J, Kielhofner G, Lee SW, Katz B, Mears C. The occupational and quality of life consequences of chronic fatigue syndrome/myalgic encephalomyelitis in young people. Br J Occup Ther. 2010 Nov 1;73(11):524-530. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3217273/ (Full article)

An Italian study on health-related quality of life and fatigue in patients with chronic fatigue syndrome and patients with chronic HCV virus infection: similarities and differences

Abstract:

Severe fatigue and a significantly reduced health-related quality of life (HRQoL) have been described in patients with chronic fatigue syndrome (CFS) in comparison with patients affected by chronic hepatitis C (CHC) and other chronic medical conditions. We examined 39 CFS and 49 CHC patients to explore whether fatigue and a poor HRQoL represent a greater medical and social problem in CFS than in CHC.

The severity of fatigue and the HRQoL were assessed using the Fatigue Impact Scale (FIS) and the Health Status Questionnaire Short Form-36 (SF-36), respectively. The statistical analysis showed both a higher score of fatigue and a lower HRQoL in CFS than in CHC patients. Furthermore, in CHC patients the FIS evaluation showed a significantly reduced score of the psychosocial domain in comparison with the other domains. Multivariate linear regression analysis revealed female gender as the most important positive variable in chronic hepatitis C patients for total score of FIS.

In conclusion, CFS was associated with a severe and disabling fatigue and an impaired HRQOL. In particular, both fatigue and all aspects of HRQOL perceived by CFS patients were significantly impaired compared to CHC patients. Consequently, management of fatigue should be considered a priority in order to improve HRQOL in CFS patients. In CHC patients the impact of fatigue on HRQoL was less significant than in CFS patients, even though the FIS evaluation showed a significant impairment of the psychosocial domain.

Source: Racciatti D, Gorgoretti V, Sepede G, Gambi F, Pizzigallo E. An Italian study on health-related quality of life and fatigue in patients with chronic fatigue syndrome and patients with chronic HCV virus infection: similarities and differences. Int J Immunopathol Pharmacol. 2011 Jul-Sep;24(3):673-81. https://www.ncbi.nlm.nih.gov/pubmed/21978699

A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities

Abstract:

BACKGROUND: The diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is subject to debate.

AIMS: To measure the time to diagnosis and services accessed.

METHOD: A national cross-sectional study. A profile and service utilisation questionnaire, information on the pathways to diagnosis, the WHOQoL Brief and a listing of priorities of the needs of participants were used. Individuals were invited to participate if they had a medical diagnosis of ME/CFS.

RESULTS: A total of 211 surveys were returned. Prior to diagnosis sufferers accessed on average 4.5 services after their initial consultation. The mean time to diagnosis was 3.7 years but time ranged from 0 to 34 years. Quality of life deteriorated post-onset. The priority for future service provision was increased understanding and diagnosis of ME/CFS by the medical profession.

CONCLUSION: In order to alleviate the burden on the sufferer there is a greater need for education on this condition.

Source: Comiskey C, Larkan F. A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities. Ir J Med Sci. 2010 Dec;179(4):501-5. doi: 10.1007/s11845-010-0585-0. Epub 2010 Sep 26. https://www.ncbi.nlm.nih.gov/pubmed/20872086

Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood

Abstract:

OBJECTIVE: The aim of this study was to compare self-reported and parent-reported quality of life for a group of pediatric patients with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) and age- and gender-matched healthy control children, to determine the extent of functional and physical impairment.

METHODS: The Child Health Questionnaire was completed by 25 children with CFS/ME, who were recruited throughout the United Kingdom, and by 23 age-, gender-, and Tanner scale-matched control children. In addition, patients were asked questions about the background to their illness (ie, precipitating factors), the status of their illness, and school attendance.

RESULTS: The median illness duration for patients was 3 years. Sixty-eight percent of the children said that their illness developed quickly, and the illness had an infectious onset for 88%. Only 1 child (4%) attended school full-time, whereas 12 (48%) attended school part-time and 8 (32%) received home tuition only. Children with CFS/ME scored significantly lower for 10 of 14 Child Health Questionnaire concepts; the lowest scores were observed for global health (scores of 21.4 and 84.1 for patients and control subjects, respectively; P < .0001) and role/social limitations attributable to physical health problems (scores of 24.9 and 100, respectively; P < .0001). Quality of life for the children with CFS/ME compared unfavorably with previously published results for pediatric patients with type 1 diabetes mellitus or asthma.

CONCLUSION: The quality of life of children with CFS/ME was profoundly reduced, compared with that of their healthy counterparts.

Source: Kennedy G, Underwood C, Belch JJ. Physical and functional impact of chronic fatigue syndrome/myalgic encephalomyelitis in childhood. Pediatrics. 2010 Jun;125(6):e1324-30. doi: 10.1542/peds.2009-2644. Epub 2010 May 17. https://www.ncbi.nlm.nih.gov/pubmed/20478937

Associations between pet ownership and self-reported health status in people suffering from chronic fatigue syndrome

Abstract:

OBJECTIVE: This study explored the association between pet ownership and self-reported health in people suffering from chronic fatigue syndrome (CFS).

METHODS: One hundred and ninety-three (193) people with medically diagnosed CFS completed a postal survey designed to collect information on illness severity, physical and psychologic health, and pet ownership practices.

RESULTS: Most of the participants were female (72.0%), over 45 years of age (57.1%) and married (41.1%) with no children (63.1%). Pets were owned by 58.3% of the sample, with dogs and cats being the most commonly kept types of companion animal. The general health of the participants was discovered to be poor, as assessed by scores on the Chalder Fatigue Questionnaire (CFQ), General Health Questionnaire-12 (GHQ-12), and Short-Form-36 (SF-36) health survey. Pet ownership was not significantly associated with scores on the CFQ, GHQ-12, or SF-36 scales, although pet owners considered their animals to offer them a range of health benefits, notably those associated with mental well-being.

CONCLUSIONS: Overall, findings suggest no statistically significant association between pet ownership and self-reported health in people with CFS. Nonetheless, people suffering from this condition believe that their pets have the potential to enhance quality of life. Although animals should not be regarded as a panacea for people with long-term conditions such as CFS, they may, nonetheless, serve a valuable, and currently underutilized, role in promoting well-being, whether in their own right, or in conjunction with more traditional forms of therapy.

Source: Wells DL. Associations between pet ownership and self-reported health status in people suffering from chronic fatigue syndrome. J Altern Complement Med. 2009 Apr;15(4):407-13. doi: 10.1089/acm.2008.0496. https://www.ncbi.nlm.nih.gov/pubmed/19388863

Health-related quality of life in chronic fatigue syndrome: predictors of physical functioning and psychological distress

Abstract:

This study investigated health-related quality of life (HRQoL; physical functioning and psychological distress) in an Australian chronic fatigue syndrome (CFS) population. The aims of the study were to compare HRQoL in those with CFS to the normal population, and to investigate the extent to which sociodemographic (age, gender, partner status, education), illness-related (illness duration, symptom frequency), and fatigue severity (physical, mental) variables predicted HRQoL.

A total of 139 people meeting CFS criteria completed questionnaires. HRQoL was assessed using standardised measures of distress and physical functioning. Compared with norms, those with CFS obtained significantly lower scores on all physical functioning areas, whereas 63% of participants reported clinically significant psychological distress.

Hierarchical regression analyses indicated that physical fatigue severity and symptom frequency were the strongest predictors of deficits in physical domain HRQoL. Physical HRQoL outcomes were also predicted by mental fatigue severity, older age, and female gender. All predictors were unrelated to psychological distress apart from weak positive associations with physical fatigue and symptom frequency.

Results identify a potent set of predictors of HRQoL and show that CFS has a pervasive negative impact on quality of life, particularly physical and psychological functioning.

Source: Lowry TJ, Pakenham KI. Health-related quality of life in chronic fatigue syndrome: predictors of physical functioning and psychological distress. Psychol Health Med. 2008 Mar;13(2):222-38. Doi: 10.1080/13548500701335698. https://www.ncbi.nlm.nih.gov/pubmed/18350466

Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study

Abstract:

OBJECTIVE: To assess the long-term effects of an integrative rehabilitation program on the overall quality of life of individuals with chronic fatigue syndrome (CFS).

METHODS: This study utilized a within-subjects, repeated measures cohort design. Twenty-three subjects diagnosed with CFS attended eight sessions of an illness-management group followed by 7 months of goal-oriented, individualized counseling that occurred once weekly for 30 min per session. Quality of life was assessed at five time points (baseline, following the group phase, following the one-on-one phase, and 4 and 12 months following program completion).

RESULTS: A within-subjects repeated measures ANOVA revealed significant increases in overall quality of life for up to 1 year following program completion [F(4, 21)=23.5, P<.001].

CONCLUSIONS: Definitive conclusions about program efficacy are limited by design issues. However, findings suggest that the program may have led to improvement in quality of life for up to 1 year following program completion.

Source: Taylor RR, Thanawala SG, Shiraishi Y, Schoeny ME. Long-term outcomes of an integrative rehabilitation program on quality of life: a follow-up study. J Psychosom Res. 2006 Dec;61(6):835-9. https://www.ncbi.nlm.nih.gov/pubmed/17141674

How relevant are exercise capacity measures for evaluating treatment effects in chronic fatigue syndrome? Results from a prospective, multidisciplinary outcome study

Abstract:

OBJECTIVE: To evaluate the outcome of a multidisciplinary treatment programme for patients with chronic fatigue syndrome, including health-related quality of life (HRQoL) and psychosocial variables, and exercise capacity measures.

DESIGN: A six-month prospective outcome study.

SETTING: University outpatient rehabilitation clinic; group setting.

SUBJECTS: One hundred and sixteen women fulfilling chronic fatigue syndrome criteria.

INTERVENTIONS: Cognitive behaviourally and graded exercise-based strategies; emphasis on adaptive lifestyle changes.

MEASURES: Short Form General Health Survey (SF-36); Symptom Checklist (SCL-90); Causal Attribution List (CAL); Self-Efficacy Scale (SE); maximum progressive bicycle ergometer test with respiratory gas analysis; and isokinetic leg strength test, before and after treatment.

RESULTS: The total group significantly improved on nearly all reported HRQoL/psychosocial variables. Changes in exercise capacity measures were rather modest and did not correlate or only weakly correlated with HRQoL/psychosocial variables. Subgroup analyses indicated that less fit patients improved significantly more on exercise capacity measures than their more fit counterparts. Patients who were fitter at baseline scored better on pretreatment HRQoL/psychosocial variables, but both subgroups improved similarly on these variables.

CONCLUSIONS: Health-related quality of life and psychosocial functioning in patients with chronic fatigue syndrome improves after a six-month cognitive behaviourally and graded exercise-based multidisciplinary treatment programme. Increase in exercise capacity measures is not a necessary condition for reported improvements, except for less fit patients.

Source: Pardaens K, Haagdorens L, Van Wambeke P, Van den Broeck A, Van Houdenhove B. How relevant are exercise capacity measures for evaluating treatment effects in chronic fatigue syndrome? Results from a prospective, multidisciplinary outcome study. Clin Rehabil. 2006 Jan;20(1):56-66. https://www.ncbi.nlm.nih.gov/pubmed/16502751