Implementing evidence-based practice for patients with chronic fatigue syndrome

Abstract:

The aim of our study was to explore whether community-based mental health care centres (MHCs) are able to implement and sustain cognitive behaviour therapy (CBT) for chronic fatigue syndrome (CFS) with the help of an implementation manual. We monitored the implementation process and treatment outcome data of three Dutch MHCs that implemented or sustained CBT for CFS, one in the context of a stepped care programme. We compared these data with findings of other treatment studies conducted in the context of CBT for CFS.

All three MHCs included at least 40 patients with dropout rates between 15% and 35% from intention-to-treat to second assessment. Effect sizes ranged between 0.88 and 1.76 for changes in fatigue severity and 0.43 and 1.23 for changes in physical functioning. With one exception, these outcomes were within the range of our benchmark. Contrary to original expectations, we provided additional implementation support to the two MHCs new with CBT for CFS. We concluded that our implementation manual does not seem to substitute external support for team leaders and associated professions during initial implementation of CBT for CFS but may have the potential to make this assistance more efficient. Particular attention should be paid to challenges of implementing stepped care for CFS.

KEY PRACTITIONERS MESSAGE: Implementation of CBT for CFS in community-based MHCs was monitored. External support was provided in addition to an implementation manual during initial implementation of CBT for CFS. Participating MHCs were generally capable of successfully implementing and delivering CBT for CFS. Implementation of low-intensity interventions for CFS might better be postponed until therapists have sufficient experience with conventional CBT for CFS.

Copyright © 2012 John Wiley & Sons, Ltd.

 

Source: Wiborg JF, Wensing M, Tummers M, Knoop H, Bleijenberg G. Implementing evidence-based practice for patients with chronic fatigue syndrome. Clin Psychol Psychother. 2014 Mar-Apr;21(2):108-14. doi: 10.1002/cpp.1827. Epub 2012 Dec 11. https://www.ncbi.nlm.nih.gov/pubmed/23229956

 

Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome

Abstract:

To test an attribution-emotion model of reactions to chronic fatigue syndrome/myalgic encephalomyelitis, 30 significant others of 30 adult patients with chronic fatigue syndrome/myalgic encephalomyelitis were administered a semi-structured interview about their beliefs regarding the patient’s illness and completed questionnaire measures of distress and behavioural responses to the patient. Spontaneous causal explanations (attributions) for illness events, symptom exacerbation and negative patient mood were extracted and coded. Significant others’ distress and negative behavioural responses towards the chronic fatigue syndrome/myalgic encephalomyelitis patient were associated with attributing illness events to causes personal and internal to the patient. Our findings may inform the future family-based interventions for chronic fatigue syndrome/myalgic encephalomyelitis.

 

Source: Brooks JM, Daglish J, Wearden AJ. Attributions, distress and behavioural responses in the significant others of people with chronic fatigue syndrome. J Health Psychol. 2013 Oct;18(10):1288-95. doi: 10.1177/1359105312464670. Epub 2012 Nov 23. https://www.ncbi.nlm.nih.gov/pubmed/23180874

 

Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development

Abstract:

Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease. In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.

In this commentary, an example of where this might be the case has been analysed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). It appears from reflection and analysis of this document that this process may indeed have gone awry. We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning. This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.

Comment in:

Who values evidence? [J Neurol Neurosurg Psychiatry. 2014]

Chronic fatigue syndrome/myalgic encephalomyelitis: more heat, some light–directions for research and clinical practice. [J Neurol Neurosurg Psychiatry. 2014]

 

Source: Smith C, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. J Neurol Neurosurg Psychiatry. 2014 Feb;85(2):214-9. doi: 10.1136/jnnp-2012-303208. Epub 2012 Nov 17. https://www.ncbi.nlm.nih.gov/pubmed/23160704

 

Why do young people with CFS/ME feel anxious? A qualitative study

Abstract:

Young people with chronic fatigue syndrome or myalagic encephalopathy (CFS/ME) (CFS/ME) experience higher levels of psychological distress than healthy controls and young people with other chronic illnesses, and it was recently demonstrated that 38% of this population scored above the clinical cut-off on the Spence Child Anxiety Scale. Subscales of social and separation anxiety were consistently high across gender and age groups.

In this study, we used qualitative methods to help us understand more about these two types of anxiety in young people with CFS/ME. Eleven young people (age 12-18) were interviewed. Interviews were self-directed by the participants and were wide ranging. The transcripts were analysed using interpretative phenomenological analysis. Five superordinate themes were identified: social loss and adjustment; introduction of uncertainty and unpredictability; the vulnerable self; individual differences; and contributions towards recovery.

Many themes were identical to those described in young people coping with other chronic illnesses in adolescence. In addition, young people with CFS/ME describe experiences associated with the perceived illegitimacy of this condition, namely: feeling unable to explain their illness; bullying from peers; disbelief; and distrust from adults around them. This becomes an additional challenge for these young people. Clinicians need to be aware of these problems, and offer appropriate support.

 

Source: Fisher H, Crawley E. Why do young people with CFS/ME feel anxious? A qualitative study. Clin Child Psychol Psychiatry. 2013 Oct;18(4):556-73. doi: 10.1177/1359104512460862. Epub 2012 Oct 23. https://www.ncbi.nlm.nih.gov/pubmed/23093520

 

Prevalence of DSM-IV personality disorders in patients with chronic fatigue syndrome: a controlled study

Abstract:

BACKGROUND: It is not yet clear whether chronic fatigue syndrome (CFS) is associated with elevated levels of personality disorders.

PURPOSE: This study aims to determine the prevalence of DSM-IV axis II personality disorders among patients with CFS.

METHODS: We examined the prevalence of personality disorders in a sample of 92 female CFS patients and in two well-matched control groups, i.e., normal community individuals (N = 92) and psychiatric patients (N = 92). Participants completed the assessment of DSM-IV personality disorders questionnaire (ADP-IV), which yields a categorical and dimensional evaluation of personality disorder features.

RESULTS: The prevalence of personality disorders in CFS patients (16.3 %) was significantly lower than in psychiatric patients (58.7 %) and was similar to that in the community sample (16.3 %). Similar results were found for dimensional and pseudodimensional scores, except for the Depressive (DE) and Obsessive-Compulsive Personality Disorder (O-C) subscales. Patients with CFS had significantly higher levels of DE features compared to normal controls and similar dimensional scores on the O-C scale compared to psychiatric controls.

CONCLUSIONS: Although the CFS sample was characterized by depressive and obsessive-compulsive personality features, this study provides no evidence for the assumption that these patients generally show a higher prevalence of axis II pathology. Given the conflicting findings in this area, future studies using multiple measures to assess personality disorders in CFS are needed to substantiate these findings.

 

Source: Kempke S, Van Den Eede F, Schotte C, Claes S, Van Wambeke P, Van Houdenhove B, Luyten P. Prevalence of DSM-IV personality disorders in patients with chronic fatigue syndrome: a controlled study. Int J Behav Med. 2013 Jun;20(2):219-28. doi: 10.1007/s12529-012-9273-y. https://www.ncbi.nlm.nih.gov/pubmed/23065435

 

Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis–a qualitative study

Abstract:

OBJECTIVES: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue. Treatment alternatives are few, and especially so for young people. The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising. The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.

DESIGN: Qualitative research study.

METHODS: Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14-26, who had undergone the treatment, and three of their parents. Inductive thematic analysis was used to evaluate the content of the interviews.

RESULTS: Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.

CONCLUSIONS: As this is the first report of young people’s experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

© 2012 The British Psychological Society.

 

Source: Reme SE, Archer N, Chalder T. Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis–a qualitative study. Br J Health Psychol. 2013 Sep;18(3):508-25. doi: 10.1111/j.2044-8287.2012.02093.x. Epub 2012 Sep 19. https://www.ncbi.nlm.nih.gov/pubmed/22989369

 

Family-focused cognitive behaviour therapy versus psycho-education for adolescents with chronic fatigue syndrome: long-term follow-up of an RCT

Abstract:

The aim of this study was to investigate the long term efficacy of family-focused cognitive behaviour therapy (CBT) compared with psycho-education in improving school attendance and other secondary outcomes in adolescents with chronic fatigue syndrome (CFS). A 24 month follow-up of a randomised controlled trial was carried out.

Participants received either 13 one-hour sessions of family-focused CBT or four one-hour sessions of psycho-education. Forty-four participants took part in the follow-up study. The proportion of participants reporting at least 70% school attendance (the primary outcome) at 24 months was 90% in CBT group and 84% in psycho-education group; the difference between the groups was not statistically significant (OR = 1.29, p = 0.80).

The proportion of adolescents who had recovered in the family-focused CBT group was 79% compared with 64% in the psycho-education, according to a definition including fatigue and school attendance. This difference was not statistically significant (Fisher’s exact test, p = 0.34). Family-focused CBT was associated with significantly better emotional and behavioural adjustment at 24 month follow-up compared to psycho-education, as reported by both adolescents (F = 6.49, p = 0.02) and parents (F = 4.52, P = 0.04). Impairment significantly decreased in both groups between six and 24 month follow-ups, with no significant group difference in improvement over this period. Gains previously observed for other secondary outcomes at six month follow-up were maintained at 24 month follow-up with no further significant improvement or group differences in improvement.

In conclusion, gains achieved by adolescents with CFS who had undertaken family-focused CBT and psycho-education generally continued or were maintained at two-year follow-up. The exception was that family-focused CBT was associated with maintained improvements in emotional and behavioural difficulties whereas psycho-education was associated with deterioration in these outcomes between six and 24-month follow-up.

Copyright © 2012 Elsevier Ltd. All rights reserved.

 

Source: Lloyd S, Chalder T, Rimes KA. Family-focused cognitive behaviour therapy versus psycho-education for adolescents with chronic fatigue syndrome: long-term follow-up of an RCT. Behav Res Ther. 2012 Nov;50(11):719-25. doi: 10.1016/j.brat.2012.08.005. Epub 2012 Aug 31. https://www.ncbi.nlm.nih.gov/pubmed/22985998

 

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

 

How do patients interpret terms for medically unexplained symptoms?

Abstract:

OBJECTIVE: To investigate how primary care patients interpret the existing terminology used to describe medically unexplained symptoms; to contribute to the current academic discussion on unequivocal terminology.

DESIGN: Descriptive cohort study.

METHODS: We approached patients in the waiting rooms of two general medical practices in the city of Groningen and in the province of Drenthe. Based on a fictitious case, the patients were asked to assign connotations to a number of possible diagnoses for medically unexplained tiredness. The patients could choose from seven predetermined connotations. Among the diagnoses for medically unexplained tiredness were ‘functional fatigue’, ‘chronic fatigue syndrome’, ‘psychosomatic tiredness’, and ‘medically unexplained tiredness’. From the seven connotations, we labeled three connotations as being negative. When patients gave at least one negative connotation to a possible diagnosis, the diagnosis was labeled as ‘offensive’.

RESULTS: A total of 184 patients participated in the study. From the alternative diagnoses for medically unexplained tiredness, ‘psychosomatic tiredness’ had the most negative connotations: at least one negative connotation for 65 (35%) patients. ‘Chronic fatigue syndrome’ and ‘functional fatigue’ had the fewest negative connotations: at least one negative connotation for respectively 17 (9%) and 24 (13%) patients.

CONCLUSION: The terms ‘chronic fatigue syndrome’ and ‘functional fatigue’ were less offensive. Our results could imply that terms for medically unexplained tiredness that refer less to a psychological basis are most acceptable for the patient.

 

Source: Kingma EM, Moddejonge R, Rosmalen J. How do patients interpret terms for medically unexplained symptoms? Ned Tijdschr Geneeskd. 2012;156(37):A4541. [Article in Dutch] https://www.ncbi.nlm.nih.gov/pubmed/22971428

 

‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome

Abstract:

The aim of this study was to explore the phenomenon of identity change and subsequent post-traumatic growth (PTG) in individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Ten participants (average illness duration 7.4 years) were interviewed (average length, 79 minutes) via a semi-structured interview schedule and verbatim transcriptions were analysed with interpretative phenomenological analysis. The four superordinate themes revealed were ‘comparisons of past to present self: “you have to be someone else, and you have to live with that”’, ‘the effect of social isolation on identity and subsequent insights into others’ behaviours’, ‘contemplation of future and identity: ”where do I go from here?”‘, and ‘PTG: “the letting go, the building up, [and] the gradual process of rebuilding”‘.

These themes outlined the experiences of those with ME/CFS as they underwent changes in identity due to the limitations the condition imposed on activities and roles, understanding others’ behaviours after a period of isolation, the comparison of the past self with the present self and finally, the positive growth that was noted by two of the interviewees with regards to a new ‘true’ self. Despite the distressing and unpredictable nature of ME/CFS, it appears that individuals with this disorder can experience personal growth.

 

Source: Arroll MA, Howard A. ‘The letting go, the building up, [and] the gradual process of rebuilding’: identity change and post-traumatic growth in myalgic encephalomyelitis/chronic fatigue syndrome. Psychol Health. 2013;28(3):302-18. doi: 10.1080/08870446.2012.721882. Epub 2012 Sep 11. https://www.ncbi.nlm.nih.gov/pubmed/22963543