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An Evaluation of a Chronic Fatigue Lifestyle Management Programme Focusing on the Outcome of Return to Work or Training
Abstract
This article presents the results of an audit of clinical outcomes from an occupational therapist led service for patients with chronic fatigue syndrome (CFS). The service offers group outpatient lifestyle management sessions, in which patients are encouraged to restructure lifestyle patterns in order to facilitate improvements in fatigue and function.
The cohort studied consisted of 98 consecutive patients attending the service who fulfilled the 1994 Centers for Disease Control criteria for CFS. The median illness duration was 5 years. The treatment offered consisted of six group sessions in lifestyle management together with three additional review sessions. The primary outcome measure was a return by the patient to employment, voluntary work or training. The cohort was followed up at a median of 18 months using a self-report questionnaire. Among the treated patients, 42% (31/74) reported new part-time or full-time employment, voluntary work or training.
The results of this study suggest that a lifestyle management programme offered by an occupational therapist led specialist service may provide positive outcomes, in terms of a return by patients to work and training, and indicates the need for a randomised controlled trial to provide definitive evidence of this.
... In a non-randomised non-controlled trial by McDermott et al. [128], 9.2% (9/98) returned to work full time and 6.1% (6/98) part-time after a lifestyle management programme. This programme used the principles of CBT and graded activity for ME/CFS within a biopsychosocial framework [113] with pacing as the core strategy [128]. ...
... In a non-randomised non-controlled trial by McDermott et al. [128], 9.2% (9/98) returned to work full time and 6.1% (6/98) part-time after a lifestyle management programme. This programme used the principles of CBT and graded activity for ME/CFS within a biopsychosocial framework [113] with pacing as the core strategy [128]. Pacing is an illness management strategy to stay within one's energy envelope which has been practiced by patients for a long time as a strategy to try and prevent relapses and optimise the things they can do [162]. ...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome leads to severe functional impairment and work disability in a considerable number of patients. The majority of patients who manage to continue or return to work, work part-time instead of full time in a physically less demanding job. The prognosis in terms of returning to work is poor if patients have been on long-term sick leave for more than two to three years. Being older and more ill when falling ill are associated with a worse employment outcome. Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work. Consequently, many patients will eventually be medically retired depending on the requirements of the retirement policy, the progress that has been made since they have fallen ill in combination with the severity of their impairments compared to the sort of work they do or are offered to do. However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement.
... Our study showed the benefit to patients of professional and social support obtained via the specialist services, beyond clinical care. This suggests that services need to be resourced to provide long-term support for patients, and to be able to focus on long-term pragmatic outcomes such as return to employment [60]. Novel means of delivering care, such as graded exercise via teletherapy [61], also need to be tested. ...
Background
Few studies have explored patients’ experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.
Methods
Semi-structured interviews were conducted during the period June–September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.
Results
Three themes were identified: ‘Journey to specialist services’; ‘Things that help or hinder treatment’; and ‘Support systems’. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants’ experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients’ experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.
Conclusions
The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients’ journeys towards an improved quality of life. This improvement came about through a process which included validation of patients’ experiences, acceptance of change, practical advice and support, and therapeutic outcomes.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-017-2337-6) contains supplementary material, which is available to authorized users.
... At follow-up 18 months later 31 (42%) of the patients had returned to new employment, voluntary work or training. 29 A comprehensive review of the literature on the natural course of CFS shows that the illness run a chronic course in many sufferers and that less than 10% of participants return to premorbid levels of functioning. 30 Return to work after long-time sickness absence is a complex process influenced by the severity of the disorder, personal factors, work-related factors and the compensation system. ...
To examine the effect of early clinical and demographic factors on occupational outcome, return to work or awarded permanent disability pension in young patients with chronic fatigue syndrome (CFS).
Longitudinal cohort study.
A written self-management programme including a description of active coping strategies for daily life was provided.
Patients with CFS after mononucleosis were evaluated at Department of Neurology, Haukeland University Hospital during 1996-2006 (contact 1). In 2009 self-report questionnaires were sent to all patients (contact 2).
Primary measure was employment status at contact 2. Secondary measures included clinical symptoms, and Fatigue Severity Scale (FSS) scores on both contacts, and Work and Social Adjustment Scale (WSAS) at contact 2.
Of 111 patients at contact 1, 92 (83%) patients returned the questionnaire at contact 2. Mean disease duration at contact 1 was 4.7 years and at contact 2 11.4 years. At contact 1, 9 (10%) were part-time or full-time employed. At contact 2, 49 (55%) were part-time or full-time employed. Logical regression analysis showed that FSS≥5 at contact 2 was associated with depression, arthralgia and long disease duration (all at contact 1).
About half of younger patients with CFS with long-term incapacity for work experienced marked improvement including full-time or part-time employment showing better outcomes than expected. Risk factors for transition to permanent disability were depression, arthralgia and disease duration.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
... Taylor and Kielhofner [40] highlighted the importance of understanding fluctuating symptoms within occupational therapy assessment and intervention programmes for CFS/ME. Rehabilitation programmes usually incorporate aspects of CBT and graded activity modification [2] and have shown some positive clinical outcomes [10,414243. However, there remains a need to increase our understanding of people's experiences of activity patterns, including pacing, and perceptions related to daily life and self within CFS/ME. ...
Purpose:
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME), has a significant impact upon daily functioning. Most recommended treatments aim to alter activity patterns based upon assumptions of activity avoidance. However, as there is limited research on the experience of activity and occupational beliefs in people with CFS/ME, this study took a qualitative approach to understand the meaning of activity in people with this disabling condition.
Method:
This study applied a social constructivist grounded theory methodology. Semi-structured interviews took place with 14 participants attending a Specialist CFS/ME Service in England.
Findings:
The emergent themes described a premorbid state of constant action with difficulty stopping an activity once it had commenced. When this pattern was interrupted by illness, participants attempted to maintain their previous level of occupational engagement. Negative associations and emotions were described in response to the concept of doing nothing or limited activity. A recurring cycle was reported of increasing activity levels when symptoms improved, followed by post exertional symptoms.
Conclusions:
Consequently, participants' beliefs about concepts of both activity and inactivity need to be considered within the application of rehabilitation programmes for CFS/ME that aim to modify activity related behaviours.
Implications for rehabilitation:
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is commonly treated in the UK using activity modification. In this small qualitative study, patients expressed negative feelings and beliefs towards the concept of doing nothing and therefore sought to push their activity levels when this was available, leading to recurring cycles of symptoms and activity. Rehabilitation programmes need to consider how people with CFS/ME engaged with activity and inactivity before the condition and how this may impact upon engagement with activity-based rehabilitation programmes.
Introduction
Fatigue is a pervasive symptom of chronic disease that often interferes with occupational performance. Our objective was to describe what is known about energy management education and occupation-related outcomes in adults with chronic diseases.
Methods
Seven electronic databases were searched for relevant literature published before August 2019. Eligible articles were full-text, available in English, and studied energy management education in adults with a chronic disease. The first author assessed article eligibility with validation from a second reviewer, extracted characteristics of included studies, and described them using descriptive statistics. A narrative synthesis of findings was conducted for each chronic disease population.
Results
Forty-four studies addressed eight different chronic disease populations. The most common program delivery format was face-to-face in a group setting (42%), 39% of programs were informed by a learning theory, and their median cumulative length was 8 hours. Positive outcomes were associated with a specific, group-based energy management program in people with multiple sclerosis. The evidence on other energy management programs and in other chronic disease populations was more limited and inconclusive.
Conclusions
Further research is needed to understand the impact of energy management education in chronic disease populations beyond multiple sclerosis, and its impact on occupational performance.
The aim of this study was to elicit participants' experiences with a multidisciplinary patient education programme and their views regarding the usefulness of the programme. Focus group interviews were conducted with 10 participants immediately and nine months following participation in the programme and analysed using thematic analysis. Initially, the participants experienced confusion and insecurity regarding coping with the illness. Participation in the programme appeared to promote understanding, acceptance and coping through gaining greater knowledge, learning coping strategies and exchanging experiences, as well as receiving understanding and acceptance. Thus, the programme was experienced to be a beneficial intervention. However, the participants expressed a need for more guidance or follow-up to maintain the practice of coping strategies for better coping with their illness.
In the United States, nearly one in five persons report some type of long lasting condition or disability (U.S. Bureau of Census, 2000). However, the employment rate for persons with disabilities is 37.5% compared to persons without disabilities at 77.8% (StatsRRTC, 2005). The objective of this study was to examine data from the Behavioral Risk Factor Surveillance System, a survey conducted by the Centers for Disease Control and Prevention, from 1995 through 2003 to determine if there is a significant relationship between type of disability and employment. Results from cross-tabulations and regression analysis show that persons with orthopedic, heart and emotional problems, stroke and diabetes, consistently show the lowest levels of employment. However, the most significant finding was that difficulty performing personal care and routine needs was far more predictive of unemployment than any single diagnosis. Implications for the medical and rehabilitative professions were made.
This study is a scoping review of 21 years of international occupational therapy literature. Its purpose is to identify and describe interventions used by occupational therapists to enable self-care, productivity, and leisure. The scoping review produced 59 articles published between 1990 and 2010. Nine articles evaluated the effectiveness of occupational therapy interventions focused on leisure outcomes, 21 on productivity outcomes, and 29 on self-care outcomes. The programs were classified according to eight types of interventions: training, education, skill development, task adaptation, occupational development, environmental modification, support provision, and support enhancement. Most studies produced at least one significant positive result (82%), indicating that occupational therapy programs were at least partially successful in improving self-care, productivity, or leisure. There is good evidence for task adaptation, training, and skill development interventions, and for the role of occupational therapy in multi-disciplinary teams.
Background
The Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996) recommended graded exercise and antidepressants for patients with chronic fatigue syndrome. We assessed efficacy and acceptability of these treatments.
Method
Six-month prospective randomised placebo and therapist contact time controlled trial with allocation to one of four treatment cells: exercise and 20 mg fluoxetine, exercise and placebo drug, appointments only and 20 mg fluoxetine, appointments and placebo drug. Drug treatment was double blind and patients were blind to assignment to exercise or appointments.
Results
Ninety-six (71%) of 136 patients completed the trial. Patients were more likely to drop out of exercise than non-exercise treatment ( P =0.05). In an intention to treat analysis, exercise resulted in fewer patients with case level fatigue than appointments only at 26 weeks (12 (18%) v . 4 (6%) respectively P =0.025) and improvement in functional work capacity at 12( P =0.005) and 26 weeks ( P =0.03). Fluoxetine had a significant effect on depression at week 12 only ( P =0.04). Exercise significantly improved health perception ( P =0.012) and fatigue ( P =0.028) at 28 weeks.
Conclusions
Graded exercise produced improvements in functional work capacity and fatigue, while fluoxetine improved depression only.
Undergraduates from diverse academic backgrounds and medical trainees were assessed regarding their attitudes about and familiarity with chronic fatigue syndrome (CFS). We explored whether different names given to chronic fatigue syndrome (CFS, myalgic encephalopathy, or Florence Nightingale disease) were associated with differences in attributions regarding its cause, nature, severity, contagion, prognosis, and treatment. Participants' attributions toward the illness varied with the names used to characterize it. Participants prompted with the myalgic encephalopathy name were more likely to attribute a biomedical cause to the illness, and less likely to consider patients as candidates for organ donation than those prompted with the CFS name. Although the medical trainees were less likely to consider the patient as malingering, and more likely to view the illness as leading to poorer quality of life and a poorer prognosis, they were also more likely to consider the illness a form of primary depression, more likely to think the patient would attempt suicide, and less likely to consider associated cognitive symptoms as severe. The implications are discussed.
Objective: To assess the efficacy of an educational intervention explaining symptoms to encourage graded exercise in patients with chronic fatigue syndrome.
Design: Randomised controlled trial.
Setting: Chronic fatigue clinic and infectious diseases outpatient clinic.
Subjects: 148 consecutively referred patients fulfilling Oxford criteria for chronic fatigue syndrome.
Interventions: Patients randomised to the control group received standardised medical care. Patients randomised to intervention received two individual treatment sessions and two telephone follow up calls, supported by a comprehensive educational pack, describing the role of disrupted physiological regulation in fatigue symptoms and encouraging home based graded exercise. The minimum intervention group had no further treatment, but the telephone intervention group received an additional seven follow up calls and the maximum intervention group an additional seven face to face sessions over four months.
Main outcome measure: A score of 25 or an increase of 10 on the SF-36 physical functioning subscale (range 10 to 30) 12 months after randomisation.
Results: 21 patients dropped out, mainly from the intervention groups. Intention to treat analysis showed 79 (69%) of patients in the intervention groups achieved a satisfactory outcome in physical functioning compared with two (6%) of controls, who received standardised medical care (P<0.0001). Similar improvements were observed in fatigue, sleep, disability, and mood. No significant differences were found between the three intervention groups.
Conclusions: Treatment incorporating evidence based physiological explanations for symptoms was effective in encouraging self managed graded exercise. This resulted in substantial improvement compared with standardised medical care.
It has been stated that, although most chronic fatigue syndrome (CFS) patients can be treated in primary care and that cognitive behaviour therapy and prescribed, graded aerobic exercise appear to be promising in outpatient management, a minority of patients will require inpatient care (Royal Colleges of Physicians, General Practitioners and Psychiatrists 1996). To date, little has been written on the need for and impact of an inpatient approach for patients with CFS. This study builds on previous work to show how patients with complex CFS responded to a specifically designed occupational therapy inpatient programme, using the principles of cognitive behaviour therapy and graded activity. A quasi-experimental study was carried out using current inpatients with those on the waiting list as a comparison. At 6 months following discharge, a significant
difference between the groups in terms of symptoms and level of ability was not demonstrated. However, a significant effect was shown in patients’ perceived health, length of time tired and management of the illness. Thirty-one (72%) of the inpatient group, compared with 10 (53%) of the comparison group, stated that they felt better than the previous year. Thirty-one (72%) of the inpatient group, compared with 7 (37%) of the comparison group, indicated better management of their illness. These findings give some evidence of the need for an inpatient CFS management programme for specific patients with complex CFS.
This paper describes chronic fatigue syndrome (CFS) and methods of management in a National Health Service Neurological Sciences Facility. A retrospective postal survey was carried out to determine the perceived level of ability of CFS inpatients 6 months following discharge from an inpatient programme of CFS treatment and management. One hundred and ninety-nine patients were admitted into the CFS inpatient programme, aged 16–68 years and with a mean age of 39 years. A specifically designed self-report questionnaire was used to ascertain duration of fatigue, change in work pattern and current level of ability (6 months following the inpatient programme).
One hundred and nine patients fulfilled the Centre for Disease Control 1994 criteria for CFS. At 6 months post-discharge, 89 (82%) patients had a perceived increase in level of ability compared with prior to their admission to hospital. The duration of symptoms appeared to affect outcome. A further controlled trial using published rating scales is currently under way to substantiate the findings.
Evaluated the efficacy of a self-help booklet and specific advice in reducing chronic fatigue in a primary care population aged 18–45 yrs. A self-help intervention (
N = 70) was compared with no treatment (
N = 80) in a randomized controlled trial. The main outcome measures were a fatigue questionnaire and the 12-item General Health Questionnaire. Follow-up was completed on 127 patients. The self-help group showed significantly greater improvements in fatigue and psychological distress than did controls. At follow-up, 63% of the self-help completers achieved a good outcome (scored less than 4 on the fatigue questionnaire) compared with 39% of the control group. The provision of a self-help booklet and specific advice during a consultation with a research nurse was more effective than no treatment at improving fatigue and psychological distress. General practitioners should be encouraged to use self-help literature in the management of patients with chronic fatigue. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
ABSTRACT– A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
The complexities of the chronic fatigue syndrome and the methodologic problems associated with its study indicate the need for a comprehensive, systematic, and integrated approach to the evaluation, classification, and study of persons with this condition and other fatiguing illnesses. We propose a conceptual framework and a set of guidelines that provide such an approach. Our guidelines include recommendations for the clinical evaluation of fatigued persons, a revised case definition of the chronic fatigue syndrome, and a strategy for subgrouping fatigued persons in formal investigations.