Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis

Abstract:

BACKGROUND: The evidence base for a range of psychosocial and behavioural interventions in managing and supporting patients with long-term conditions (LTCs) is now well-established. With increasing numbers of such patients being managed in primary care, and a shortage of specialists in psychology and behavioural management to deliver interventions, therapeutic interventions are increasingly being delivered by general nurses with limited training in psychological interventions. It is unknown what issues this raises for the nurses or their patients. The purpose of the study was to examine the challenges faced by non-specialist nurses when delivering psychological interventions for an LTC (chronic fatigue syndrome/myalgic encephalomyelitis [CFS/ME]) within a primary care setting.

METHODS: A qualitative study nested within a randomised controlled trial [ISRCTN 74156610] explored the experiences and acceptability of two different psychological interventions (pragmatic rehabilitation and supportive listening) from the perspectives of nurses, their supervisors, and patients. Semi structured in-depth interviews were conducted with three nurse therapists, three supervisors, and 46 patients. An iterative approach was used to develop conceptual categories from the dataset.

RESULTS: Analyses identified four sets of challenges that were common to both interventions: (i) being a novice therapist, (ii) engaging patients in the therapeutic model, (iii) dealing with emotions, and (iv) the complexity of primary care. Each challenge had the potential to cause tension between therapist and patient. A number of strategies were developed by participants to manage the tensions.

CONCLUSIONS: Tensions existed for nurses when attempting to deliver psychological interventions for patients with CFS/ME in this primary care trial. Such tensions should be addressed before implementing psychological interventions within routine clinical practice. Similar tensions may be found for other LTCs. Our findings have implications for developing therapeutic alliances and highlight the need for regular supervision.

 

Source: Peters S, Wearden A, Morriss R, Dowrick CF, Lovell K, Brooks J, Cahill G, Chew-Graham C; FINE Trial Group. Collaborators (23) Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis. Implement Sci. 2011 Dec 22;6:132. doi: 10.1186/1748-5908-6-132. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3259041/ (Full article)

 

The role of acceptance in chronic fatigue syndrome

Abstract:

OBJECTIVE: In this paper we consider the role that acceptance plays in fatigue and physical and social functioning. We predicted that lack of acceptance would be positively correlated with fatigue and impairment in functioning; that there would be a significant relationship between perfectionism and acceptance; and cognitive behavioural therapy (CBT) would increase acceptance.

METHODS: Two hundred and fifty nine patients with chronic fatigue syndrome (CFS) completed questionnaires measuring fatigue, physical functioning, work and social adjustment, lack of acceptance, perfectionism and depression. Ninety consecutive attenders received a course of CBT and completed further questionnaires at discharge and 3months post-treatment. Correlations and multiple hierarchical regressions were used to determine relationships between acceptance, perfectionism and clinical outcome variables.

RESULTS: At baseline, lack of acceptance was the key factor associated with impaired physical functioning and work and social adjustment. Lack of acceptance and doubts about actions were associated with fatigue in a multiple regression analysis. At discharge and follow-up patients showed significantly increased acceptance, as well as reduced Concern over Mistakes, less fatigue and impairment of physical functioning, and improved work and social adjustment.

CONCLUSION: This is the first study to our knowledge which shows a change in acceptance after CBT and a relationship between acceptance and perfectionism. Acceptance may be an important factor to consider within treatments for CFS.

2011 Elsevier Inc. All rights reserved.

 

Source: Brooks SK, Rimes KA, Chalder T. The role of acceptance in chronic fatigue syndrome. J Psychosom Res. 2011 Dec;71(6):411-5. doi: 10.1016/j.jpsychores.2011.08.001. Epub 2011 Sep 16. https://www.ncbi.nlm.nih.gov/pubmed/22118384

 

Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine the relationship between a history of childhood maltreatment and the treatment response to cognitive behavior therapy for chronic fatigue syndrome (CFS).

METHODS: A cohort study in a tertiary care clinic with a referred sample of 216 adult patients meeting the Centers for Disease Control and Prevention criteria for CFS, and starting cognitive behavior therapy. Main outcome measures changes between pre- and post therapy in fatigue (Checklist Individual Strength fatigue subscale), disabilities (Sickness Impact Profile total score), physical functioning (short form 36 health survey subscale) and psychological distress (Symptom checklist 90 total score).

RESULTS: At baseline, patients with a history of childhood maltreatment had significantly more limitations and a higher level of psychological distress, but were not more severely fatigued. Change scores on the outcome measures after cognitive behavior therapy did not differ significantly between patients with or without a history of childhood maltreatment, or between the different types of childhood maltreatment. However, patients with a history of childhood maltreatment still experienced more limitations and a higher level of psychological distress after CBT.

CONCLUSIONS: A history of childhood maltreatment was not related to the treatment response of cognitive behavior therapy for CFS. In patients with a history of childhood maltreatment CFS symptoms can be treated with CBT just as well as those without.

2011 Elsevier Inc. All rights reserved.

 

Source: Heins MJ, Knoop H, Lobbestael J, Bleijenberg G. Childhood maltreatment and the response to cognitive behavior therapy for chronic fatigue syndrome. J Psychosom Res. 2011 Dec;71(6):404-10. doi: 10.1016/j.jpsychores.2011.05.005. Epub 2011 Jun 30. https://www.ncbi.nlm.nih.gov/pubmed/22118383

 

Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome

Abstract:

This study examined the properties of the Beck Depression Inventory-II (BDI-II) in a sample of 111 patients with chronic fatigue syndrome (CFS). Exploratory factor analysis identified two factors. The mean score for the Somatic-Affective factor was significantly higher than the Cognitive factor. Convergent and discriminant validity were assessed for BDI-II total score, the two factor scores, and the BDI for Primary Care (BDI-PC). The BDI-PC and Cognitive factor demonstrated superior validity. Results suggest patients endorse BDI-II somatic items that overlap with CFS symptoms at a high rate. Factor scores should be evaluated separately, or the BDI-PC should be utilized with this population.

 

Source: Brown M, Kaplan C, Jason L. Factor analysis of the Beck Depression Inventory-II with patients with chronic fatigue syndrome. J Health Psychol. 2012 Sep;17(6):799-808. doi: 10.1177/1359105311424470. Epub 2011 Nov 21. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3655435/ (Full article)

 

Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis

Abstract:

PURPOSE: An accommodative coping style (e.g. acceptance) is related to a better mental health-related quality of life (MHQL) in patients with chronic fatigue syndrome (CFS). We want to explore whether neuroticism is predictive for this coping style and MHQL. Secondly we want to explore the relation between acceptance and physical health-related quality of life (PHQL) and expect that illness-related variables such as fatigue severity and duration are related to PHQL.

METHOD: In this cross-sectional study, 117 patients with chronic fatigue syndrome from an outpatient internal medicine clinic completed self-report questionnaires on quality of life (SF-36), acceptance (ICQ), personality traits (NEO-FFI) and fatigue severity (CIS).

RESULTS: Regression analyses showed that neuroticism and acceptance are predictors of MHQL (38% of the variance was explained). The path analysis showed that acceptance mediates between neuroticism and MHQL and that PHQL is related to MHQL. PHQL is related to fatigue severity and duration, but not to neuroticism and acceptance.

CONCLUSION: Stimulating an ‘accepting accommodative coping style’ within the treatment for CFS is important in improving mental quality of life. Our results suggest that neuroticism may be negatively related to acceptance and MHQL. This findings support the idea that a psychological diagnostic workout with special attention to personality traits in relation to their coping style is recommended in order to choose the most appropriate therapeutic approach in this population.

 

Source: Poppe C, Crombez G, Hanoulle I, Vogelaers D, Petrovic M. Mental quality of life in chronic fatigue is associated with an accommodative coping style and neuroticism: a path analysis. Qual Life Res. 2012 Oct;21(8):1337-45. doi: 10.1007/s11136-011-0048-8. Epub 2011 Oct 29. https://www.ncbi.nlm.nih.gov/pubmed/22038396

 

Cognitive behavioural treatment for chronic fatigue syndrome in a rehabilitation setting: effectiveness and predictors of outcome

Abstract:

Cognitive behavioural therapy (CBT) was combined with graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS) in an uncontrolled implementation study of an inpatient multidisciplinary group therapy.

During the intake procedure, 160 CFS patients completed a questionnaire on fatigue related measurements, physical impairment, depression, somatic and psychological attributions, somatic focus, and sense of control over symptoms. Pre-treatment physical activity level was measured with an actometer. At baseline, post-treatment and 6-month follow-up individual strength, subjective fatigue and physical impairment, were reassessed. Large effect sizes were found on subjective fatigue (1.2 post-treatment; 1.2 follow-up) and physical impairment (-.9 post-treatment; -.9 follow-up).

Clinically significant improvement was found in 33.8% of the participants at post-treatment and 30.6% at follow-up. Individual strength at post-treatment was predicted by level of physical activity before treatment, and by sense of control over symptoms and physical activity at follow-up. Clinically significant improvement in subjective fatigue was predicted by not receiving a disablement insurance benefit, shorter duration of fatigue, higher sense of control over symptoms and, at follow-up by more pre-treatment physical activity. In conclusion, the intervention was effective for CFS patients. Cognitive behavioural factors that perpetuate fatigue symptoms are also predictors of treatment outcome.

Copyright © 2011 Elsevier Ltd. All rights reserved.

 

Source: Schreurs KM, Veehof MM, Passade L, Vollenbroek-Hutten MM. Cognitive behavioural treatment for chronic fatigue syndrome in a rehabilitation setting: effectiveness and predictors of outcome. Behav Res Ther. 2011 Dec;49(12):908-13. doi: 10.1016/j.brat.2011.09.004. Epub 2011 Sep 28. https://www.ncbi.nlm.nih.gov/pubmed/21982345

 

Hypothalamic-pituitary-adrenal axis dysfunction in chronic fatigue syndrome

Abstract:

The weight of current evidence supports the presence of the following factors related to hypothalamic-pituitary-adrenal (HPA) axis dysfunction in patients with chronic fatigue syndrome (CFS): mild hypocortisolism; attenuated diurnal variation of cortisol; enhanced negative feedback to the HPA axis; and blunted HPA axis responsiveness. Furthermore, HPA axis changes seem clinically relevant, as they are associated with worse symptoms and/or disability and with poorer outcomes to standard treatments for CFS.

Regarding etiology, women with CFS are more likely to have reduced cortisol levels. Studies published in the past 8 years provide further support for a multifactorial model in which several factors interact to moderate HPA axis changes. In particular, low activity levels, depression and early-life stress appear to reduce cortisol levels, whereas the use of psychotropic medication can increase cortisol. Addressing these factors-for example, with cognitive behavioral therapy-can increase cortisol levels and is probably the first-line approach for correcting HPA axis dysfunction at present, as steroid replacement is not recommended.

Given what is now a fairly consistent pattern of findings for the type of HPA axis changes found in CFS, we recommend that future work focuses on improving our understanding of the cause and relevance of these observed changes.

Comment in: Neuroendocrine correlates of childhood trauma in CFS. [Nat Rev Endocrinol. 2012]

 

Source: Papadopoulos AS, Cleare AJ. Hypothalamic-pituitary-adrenal axis dysfunction in chronic fatigue syndrome. Nat Rev Endocrinol. 2011 Sep 27;8(1):22-32. doi: 10.1038/nrendo.2011.153. https://www.ncbi.nlm.nih.gov/pubmed/21946893

 

Cognitive behaviour therapy for chronic fatigue syndrome in adults: face to face versus telephone treatment: a randomized controlled trial

Abstract:

BACKGROUND: Previous research has shown that face to face cognitive behaviour therapy (CBT) is an effective treatment for chronic fatigue syndrome (CFS)/Myalgic Encephalomyelitis (ME). However, some patients are unable to travel to the hospital for a number of reasons.

AIMS: The aim of this study was to assess whether face to face CBT was more effective than telephone CBT (with face to face assessment and discharge appointment) for patients with CFS.

METHOD: Patients aged 18-65 were recruited from consecutive referrals to the Chronic Fatigue Syndrome (CFS) Research and Treatment Unit at The South London and Maudsley NHS Trust in London. Participants were randomly allocated to either face to face CBT or telephone CBT by a departmental administrator. Blinding of participants and care givers was inappropriate for this trial. A parallel-groups randomised controlled trial was used to compare the two treatments. The primary outcomes were physical functioning and fatigue.

RESULTS: Significant improvements in the primary outcomes of physical functioning and fatigue occurred and were maintained to one year follow-up after discharge from treatment. Improvements in social adjustment and global outcome were noted and patient satisfaction was similar in both groups.

CONCLUSIONS: Results from this study indicate that telephone CBT with two face to face appointments is a mild to moderately effective treatment for CFS and may be offered to patients where face to face treatment is not a viable option. Despite these encouraging conclusions, dropout was relatively high and therapists should be aware of this potential problem.

 

Source: Burgess M, Andiappan M, Chalder T. Cognitive behaviour therapy for chronic fatigue syndrome in adults: face to face versus telephone treatment: a randomized controlled trial. Behav Cogn Psychother. 2012 Mar;40(2):175-91. doi: 10.1017/S1352465811000543. Epub 2011 Sep 20. https://www.ncbi.nlm.nih.gov/pubmed/21929831

 

Long-term sickness absence among patients with chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome is associated with high levels of occupational disability. Consecutive out-patients at a chronic fatigue syndrome treatment service were studied for associations between occupational status, symptom severity and cognitive and behavioural responses to symptoms. All patients had high symptom levels; however, those on long-term sickness absence had significantly more physical fatigue (β = 0.098, P<0.05) and worse sleep (β = 0.075, P<0.05). Patients with long-term sickness absence also demonstrated more embarrassment avoidance cognitions (β = 0.086, P<0.05) and avoidance resting behavioural responses (β = 0.078, P<0.05). Identifying and addressing avoidance behaviours and cognitions regarding embarrassment in interventions may enhance the chances of individuals returning to work.

 

Source: Knudsen AK, Henderson M, Harvey SB, Chalder T. Long-term sickness absence among patients with chronic fatigue syndrome. Br J Psychiatry. 2011 Nov;199(5):430-1. doi: 10.1192/bjp.bp.110.082974. Epub 2011 Sep 8. http://bjp.rcpsych.org/content/199/5/430.long (Full article)

 

The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME)

Abstract:

BACKGROUND: Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and children can be severely affected attending little or no school for extended periods. There are no studies quantifying the financial impact of having a child with CFS/ME and there is little information of the impact on parental mood.

METHODS: Forty mothers of children with CFS/ME from a regional specialist CFS/ME service completed inventories to assess their psychological well-being (Hospital Anxiety and Depression Scale, General Health Questionnaire-12) loss of earnings and increased expenditure. In addition, eight mothers took part in a semi-structured qualitative interview.

RESULTS: Most parents of children with CFS/ME experience loss of monthly income (mean = £247) and increase in monthly expenditure (mean = £206). Twenty-eight (72%) mothers were above the cut-off for the General Health Questionnaire-12 compared with 20% in the healthy population (95% CI 55, 85, P < 0.001) suggesting they probably have a mental health problem. This may be explained by the qualitative interviews where mothers described five areas contributing to poor parental health: lack of understanding from others; marital tension; concern about their child’s distress; concern about the impact on siblings and emotional distress causing physical symptoms.

CONCLUSIONS: The majority of families of children with CFS/ME experience decreased income and increased expenditure with a marked impact on maternal psychological health. Clinicians need to be aware of this to provide appropriate support to families who care for children with CFS/ME.

© 2011 Blackwell Publishing Ltd.

 

Source: Missen A, Hollingworth W, Eaton N, Crawley E. The financial and psychological impacts on mothers of children with chronic fatigue syndrome (CFS/ME). Child Care Health Dev. 2012 Jul;38(4):505-12. doi: 10.1111/j.1365-2214.2011.01298.x. Epub 2011 Sep 1. https://www.ncbi.nlm.nih.gov/pubmed/21880054