From Journal of Health Psychology, 8 June 2014 (E-published before print).
Participant attributions for global change ratings in unexplained chronic fatigue and chronic fatigue syndrome.
Fred Friedberg(*), Janna Coronel, Viktoria Seva, Jenna L Adamowicz, Anthony Napoli
– Stony Brook University, USA
* Corresponding author. Department of Psychiatry and Behavioral Sciences, Putnam Hall/South Campus, Stony Brook University, Stony Brook, NY 11794-8790, USA. Email: fred.friedberg@stonybrookmedicine.edu
Abstract
The purpose of this mixed methods study was to identify participants' attributions for their global impression of change ratings in a behavioral intervention for unexplained chronic fatigue and chronic fatigue syndrome. At 3-month follow-up, participants (N=67) were asked ‘Why do you think you are (improved, unchanged, worse)?' Improved patients pointed to specific behavioral changes, unchanged patients referred to a lack of change in lifestyle, and worsened patients invoked stress and/or specific life events. Identifying patient perceptions of behaviors associated with patient global impression of change-rated improvement and non-improvement may assist in developing more effective management strategies in clinical care.
From BMC Family Practice, 12 June 2014. Open access journal.
Towards a clinically useful diagnosis for mild-to-moderate conditions of medically unexplained symptoms in general practice: a mixed methods study.
Mette T Rask(1*), Rikke S Andersen(1), Flemming Bro(1), Per Fink(2), Marianne Rosendal(1),
1) Research Unit for General Practice, Section for General Practice, Department of Public Health, Aarhus University, Bartholins Allé 2, 8000 Aarhus C, Denmark
2) Research Clinic for Functional Disorders and Psychosomatics, Aarhus University Hospital, Barthsgade 5, 8200 Aarhus N, Denmark
*) Corresponding author Email: mette.rask@alm.au.dk
Abstract
BACKGROUND
Symptoms that cannot be attributed to any known conventionally defined disease are highly prevalent in general practice. Yet, only severe cases are captured by the current diagnostic classifications of medically unexplained symptoms (MUS). This study explores the clinical usefulness of a proposed new diagnostic category for mild-to-moderate conditions of MUS labelled ‘multiple symptoms'.
METHODS
A mixed methods approach was used. For two weeks, 20 general practitioners (GPs) classified symptoms presented in consecutive consultations according to the International Classification of Primary Care (ICPC) supplemented with the new diagnostic category ‘multiple symptoms'. The GPs' experiences were subsequently explored by focus group interviews. Interview data were analysed according to ethnographic principles.
RESULTS
In 33% of patients, GPs classified symptoms as medically unexplained, but applied the category of ‘multiple symptoms' only in 2.8%. The category was described as a useful tool for promoting communication and creating better awareness of patients with MUS; as such, the category was perceived to reduce the risk of unnecessary tests and referrals of these patients. Three main themes were found to affect the clinical usefulness of the diagnostic category of ‘multiple symptoms': 1) lack of consensus on categorisation practices, 2) high complexity of patient cases and 3) relational continuity (i.e. continuity in the doctor-patient relationship over time). The first two were seen as barriers to usefulness, the latter as a prerequisite for application. The GPs' diagnostic classifications were found to be informed by the GPs' subjective pre-formed concepts of patients with MUS, which reflected more severe conditions than actually intended by the new category of ‘multiple symptoms'.
CONCLUSIONS
The study demonstrated possible clinical benefits of the category of ‘multiple symptoms', such as GPs' increased awareness and informational continuity in partnership practices. The use of the category was challenged by the GPs' conceptual understanding of MUS and was applied only to a minority of patients. The study demonstrates a need for addressing these issues if sub-threshold categories for MUS are to be applied in routine care. The category of ‘multiple symptoms' may profitably be used in the future as a risk indicator rather than a diagnostic category.
From BMC Research Notes, 18 June 2014. Download pdf of Full text available HERE. This item also appeared in the ME Association's news blog earlier this week, together with a link to an earlier paper on the subject that appeared in the Journal of Clinical Pathology in November 2010.
Technical Note
Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol
Luis Nacul (1*), Dominic G O’Donovan (2), Eliana M Lacerda (1), Djordje Gveric(3), Kirstin Goldring(4), Alison Hall(5), Erinna Bowman (1), Derek Pheby(6).
1) London School of Hygiene & Tropical Medicine, ITD/CRD/International Centre for Evidence in Disability, K/490, Keppel Street, WC1E 7HT London, UK
2) Department of Histopathology, Box 235 Level 5 John Bonnett Clincal Laboratories, Addenbrooke’s Hospital, Hills Road, CB1 0QQ Cambridge, UK
3) The UK Multiple Sclerosis and Parkinson’s Disease Tissue Banks, Hammersmith Campus, Imperial College, 160 Du Cane Road, W12 0NN London, UK
4) UCL-RFH BioBank, Royal Free Hospital, 1st Floor, Rowland Hill Street, NW3 2PF Hampstead, UK
5) PHG Foundation, 2 Wort’s Causeway, Cambridge CB1 8RN, UK
6) Faculty of Health and Society, Buckinghamshire New University, Uxbridge Campus, 106, Oxford Road, Uxbridge, Middlesex UB8 1NA, USA
*) Corresponding author Email: Luis.Nacul@lshtm.ac.uk
Abstract (provisional)
BACKGROUND
Our aim, having previously investigated through a qualitative study involving extensive discussions with experts and patients the issues involved in establishing and maintaining a disease specific brain and tissue bank for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was to develop a protocol for a UK ME/CFS repository of high quality human tissue from well characterised subjects with ME/CFS and controls suitable for a broad range of research applications.
This would involve a specific donor program coupled with rapid tissue collection and processing, supplemented by comprehensive prospectively collected clinical, laboratory and self-assessment data from cases and controls.
FINDINGS
We reviewed the operations of existing tissue banks from published literature and from their internal protocols and standard operating procedures (SOPs). On this basis, we developed the protocol presented here, which was designed to meet high technical and ethical standards and legal requirements and was based on recommendations of the MRC UK Brain Banks Network and the Brain Net Europe II network.
The facility would be most efficient and cost-effective if incorporated into an existing tissue bank. Tissue collection would be rapid and follow robust protocols to ensure preservation sufficient for a wide range of research uses. A central tissue bank would have resources both for wide-scale donor recruitment and rapid response to donor death for prompt harvesting and processing of tissue.
CONCLUSION
An ME/CFS brain and tissue bank could be established using this protocol. Success would depend on careful consideration of logistic, technical, legal and ethical issues, continuous consultation with patients and the donor population, and a sustainable model of funding ideally involving research councils, health services, and patient charities.
This initiative could revolutionise the understanding of this still poorly-understood disease and enhance development of diagnostic biomarkers and treatments.