Category: Medical Care

Functional somatic syndromes from the view of cultural anthropology

Abstract:

The functional somatic syndromes have acquired major socio-cultural and political dimensions. Socio-cultural factors clearly affect symptoms, suffering, and disability perception and reporting. And knowledge of explanatory models of bodily distress for patients from different cultural backgrounds is useful in the establishment of a stable doctor -patient relationship. FSS may be an operational category to bridge between medical explanatory model and patient’s model. According to medical anthropology, sickness has two faces; illness and disease. “Disease” is the problem from the practitioner’s perspective, and “illness” is the human experience of symptoms and suffering. In this paper, the anthropological research on chronic fatigue syndrome as “not real” illness experience was described.

 

Source: Nakagami A, Tsujiuchi T. Functional somatic syndromes from the view of cultural anthropology. Nihon Rinsho. 2009 Sep;67(9):1683-8. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/19768901

 

When a parent is chronically ill: chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic illness may reshape not only the life of the ill parent but also that of the entire family, but research in this area remains limited. More specifically, little is known about how an ill parent and the family respond to a particularly devastating and controversial chronic illness, chronic fatigue syndrome (CFS).

OBJECTIVES: The objective of this study was to describe the responses of the parent and the ensuing family system responses to the presence of chronic fatigue syndrome as a chronic parental illness.

METHODS: Parents were interviewed individually, and then the ill parent and as many immediate family members as possible were interviewed collectively. After consent or assent, interviews were audiotaped and transcribed. Thematic analyses at the individual, intrafamily, and across-family levels were used to explore these phenomena.

RESULTS: Eight ill parents first described the onset of illness, an ongoing struggle to receive diagnosis and care, and the significance of the illness in transforming present and future roles. Multiple members of the family together with the ill parent described how they struggled with the reality of the illness, the shifting roles and responsibilities, the reduced family income, and the frequent social isolation that could be exacerbated by the controversial nature of the illness. Families described and demonstrated their struggles to maintain normal family life and plans in the face of continuing uncertainty.

DISCUSSION: This study is situated within current scholarship on family responses to chronic parental illness. The value of the family research interview is affirmed. Recommendations are made for future directions in family nursing research exploring responses of families in which a parent is chronically ill.

 

Source: Donalek JG. When a parent is chronically ill: chronic fatigue syndrome. Nurs Res. 2009 Sep-Oct;58(5):332-9. doi: 10.1097/NNR.0b013e3181ac156f. https://www.ncbi.nlm.nih.gov/pubmed/19752673

 

Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome

Abstract:

OBJECTIVE: The aim of this study was to determine the efficacy of an out-patient, multi-component programme developed for patients with chronic fatigue syndrome (CFS).

METHODS: Twenty-two patients were assessed before and after six months of treatment. Findings were compared with 22 individuals on the waiting list. The programme offered medical care as well as information and counselling to help patients to understand, accept and cope with their illness.

RESULTS: At six months, there were significant differences between the groups for fatigue, self-efficacy and anxiety. Overall, 82% of the treated patients reported feeling better and 23% had improved to such a degree that they were discharged from the clinic. The gains were maintained at twelve months.

CONCLUSION: This programme was found to be both helpful and acceptable and may provide a useful first-line intervention for many patients with CFS.

PRACTICE IMPLICATIONS: Short, pragmatic programmes may be as effective as cognitive-behaviour therapy.

Comment in: Treatment of chronic fatigue syndrome: how to find a ‘new equilibrium’? [Patient Educ Couns. 2009]

 

Source: Goudsmit EM, Ho-Yen DO, Dancey CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Educ Couns. 2009 Nov;77(2):231-6. doi: 10.1016/j.pec.2009.05.015. Epub 2009 Jul 2. https://www.ncbi.nlm.nih.gov/pubmed/19576714

 

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Abstract:

BACKGROUND: NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses’ understanding and beliefs about CFS/ME and its management.

METHODS: Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

CONCLUSION: The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

 

Source: Chew-Graham C, Dixon R, Shaw JW, Smyth N, Lovell K, Peters S. Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study. BMC Nurs. 2009 Jan 22;8:2. doi: 10.1186/1472-6955-8-2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635361/ (Full article)

 

Barriers to healthcare utilization in fatiguing illness: a population-based study in Georgia

Abstract:

BACKGROUND: The purpose of this study was to determine the prevalence of barriers to healthcare utilization in persons with fatiguing illness and describe its association with socio-demographics, the number of health conditions, and frequency of healthcare utilization. Furthermore, we sought to identify what types of barriers interfered with healthcare utilization and why they occurred.

METHODS: In a cross-sectional population-based survey, 780 subjects, 112 of them with chronic fatigue syndrome (CFS), completed a healthcare utilization questionnaire. Text analysis was used to create the emerging themes from verbatim responses regarding barriers to healthcare utilization. Multiple logistic regression was performed to examine the association between barriers to healthcare utilization and other factors.

RESULTS: Forty percent of subjects reported at least one barrier to healthcare utilization. Of 112 subjects with CFS, 55% reported at least one barrier to healthcare utilization. Fatiguing status, reported duration of fatigue, insurance, and BMI were significant risk factors for barriers to healthcare utilization. After adjusting for socio-demographics, medication use, the number of health problems, and frequency of healthcare utilization, fatiguing status remained significantly associated with barriers to healthcare utilization.

Subjects with CFS were nearly 4 times more likely to forego needed healthcare during the preceding year than non-fatigued subjects while those with insufficient fatigue (ISF) were nearly 3 times more likely.Three domains emerged from text analysis on barriers to healthcare utilization: 1) accessibility; 2) knowledge-attitudes-beliefs (KABs); and, 3) healthcare system. CFS and reported duration of fatigue were significantly associated with each of these domains. Persons with CFS reported high levels of healthcare utilization barriers for each domain: accessibility (34%), healthcare system (25%), and KABs (19%). In further examination of barrier domains to healthcare utilization, compared to non-fatigued persons adjusted ORs for CFS having “accessibility”, “KAB” and “Healthcare System” barrier domains decreased by 40%, 30%, and 19%, respectively.

CONCLUSION: Barriers to healthcare utilization pose a significant problem in persons with fatiguing illnesses. Study results suggested two-fold implications: a symptom-targeted model focusing on symptoms associated with fatigue; and an interactive model requiring efforts from patients and providers to improve interactions between them by reducing barriers in accessibility, KABs, and healthcare system.

 

Source: Lin JM, Brimmer DJ, Boneva RS, Jones JF, Reeves WC. Barriers to healthcare utilization in fatiguing illness: a population-based study in Georgia. BMC Health Serv Res. 2009 Jan 20;9:13. doi: 10.1186/1472-6963-9-13. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2651135/ (Full article)

 

A train-the-trainer education and promotion program: chronic fatigue syndrome–a diagnostic and management challenge

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a complicated illness for providers and patients. Fewer than 20% of persons with CFS have been diagnosed and treated. For providers, compounding the issue are the challenges in making a diagnosis due to the lack of a biomedical marker.

METHODS: The objective of the CFS diagnosis and management curriculum was to instruct core trainers as to the evaluation, diagnosis, and management of CFS. Over a two year period, 79 primary care physicians, physician assistants, and nurse practitioners from diverse regions in the U.S. participated as core trainers in a two day Train-the-Trainer (TTT) workshop. As core trainers, the workshop participants were expected to show increases in knowledge, self-efficacy, and management skills with the primary goal of conducting secondary presentations.

RESULTS: The optimal goal for each core trainer to present secondary training to 50 persons in the health care field was not reached. However, the combined core trainer group successfully reached 2064 primary care providers. Eighty-two percent of core trainers responded “Very good” or “Excellent” in a post-tessurvey of self-efficacy expectation and CFS diagnosis. Data from the Chicago workshops showed significant improvement on the Primary Care Opinion Survey (p < 0.01) and on the Relevance and Responsibility Factors of the CAT survey (p = 0.03 and p = 0.04, respectively). Dallas workshop data show a significant change from pre- to post-test scores on the CFS Knowledge test (p = 0.001). Qualitative and process evaluation data revealed that target audience and administrative barriers impacted secondary training feasibility.

CONCLUSION: Data show the workshop was successful in meeting the objectives of increasing CFS knowledge and raising perceived self-efficacy towards making a diagnosis. The CFS TTT program informed an educational provider project by shifting the format for physicians to grand rounds and continuing medical education design while retaining TTT aspects for nurse practitioners and physicians assistants. Evaluations also indicate that secondary trainings may be more readily employed and accepted if administrative barriers are addressed early in the planning phases.

 

Source: Brimmer DJ, McCleary KK, Lupton TA, Faryna KM, Hynes K, Reeves WC. A train-the-trainer education and promotion program: chronic fatigue syndrome–a diagnostic and management challenge. BMC Med Educ. 2008 Oct 15;8:49. doi: 10.1186/1472-6920-8-49. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2576246/ (Full article)

 

Anaesthesia for patients with idiopathic environmental intolerance and chronic fatigue syndrome

Abstract:

BACKGROUND: Idiopathic environmental intolerance syndrome (IEI), formerly known as multiple chemical sensitivity syndrome (MCSS), andchronic fatigue syndrome (CFS) are controversial diseases and there is little information in the literature regarding the appropriate conduct of anaesthesia in such patients.

METHODS: We studied 27 patients referred to our anaesthetic allergy clinic with IEI and CFS and performed literature and web searches on anaesthesia in these disorders.

RESULTS: The patients had a significant incidence of adverse events related to anaesthesia which were not allergic in nature. The adverse effects usually occurred postoperatively and were self limiting. Patients with IEI and CFS are not at risk of anaphylaxis and there is no scientific evidence that any drug or technique is excessively hazardous. Neither our patients nor the review of the scientific literature supported available web-based recommendations for the anaesthetic management of patients with IEL and CFS.

CONCLUSIONS: We suggest that the anaesthetist may be best to use the technique they would use if the patient did not have CFS or IEI but avoid drugs to which there is a history of adverse response. Anaesthesia is likely to be associated with adverse effects in these patients but the effects are not likely to be severe. A series of recommendations for the safe and harmonious conduct of anaesthesia in patients with CFS and IEI are provided.

 

Source: Fisher MM, Rose M. Anaesthesia for patients with idiopathic environmental intolerance and chronic fatigue syndrome. Br J Anaesth. 2008 Oct;101(4):486-91. doi: 10.1093/bja/aen242. http://bja.oxfordjournals.org/content/101/4/486.long (Full article)

 

Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome

Abstract:

PURPOSE: Chronic fatigue syndrome (CFS), or myalgic encephalitis (ME), is a contentious condition and often a diagnosis of exclusion. Current policy in the United Kingdom recommends management in primary care. We explored how patients with CFS/ME and family physicians understand this condition and how their understanding might affect the primary care consultation.

METHODS: We undertook a qualitative study with patients and family physicians from North West England participating in a primary care-based randomized controlled trial (FINE Trial). Data were collected through purposive sampling and in-depth semistructured interviews with 24 patients and 14 family physicians. We analyzed interview transcripts using constant comparison methods.

RESULTS: Family physicians access social and cultural knowledge to reach a clinical understanding of CFS/ME and its management. Patients recognize the difficulties family physicians encounter in understanding their symptoms and access similar nonclinical sources of information. We suggest that both patients and physicians use biomedical discourse within the consultation: the physician to maintain the position as an expert, the patient to engage the physician.

CONCLUSIONS: Family physicians obtain information about CFS/ME from their nonprofessional world, which they incorporate into their professional realm. Patients and physicians describe the use of the discourse of science within consultations about CFS/ME. This form of shared understanding could lead to a positive collaborative interaction. Family physicians need a biomedical, evidence-based knowledge about CFS/ME. There is potential to use the rich knowledge base that patients can bring to consultations in training initiatives directed at family physicians.

 

Source: Chew-Graham CA, Cahill G, Dowrick C, Wearden A, Peters S. Using multiple sources of knowledge to reach clinical understanding of chronic fatigue syndrome. Ann Fam Med. 2008 Jul-Aug;6(4):340-8. doi: 10.1370/afm.867. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2478494/ (Full article)

 

Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years

Abstract:

Chronic fatigue syndrome is a complex debilitating medical disorder that affects approximately 4 million persons in the United States, predominantly women. There has been little scientific exploration about the experience of pregnancy, childbirth, and the postpartum period for women with this disorder. A review of the literature and current research findings addressing the epidemiology, diagnosis, symptoms, and treatment of chronic fatigue syndrome are presented, as well as the currently available data regarding the experience of women with chronic fatigue syndrome anticipating or experiencing pregnancy and the postpartum period. Expert opinion is presented along with current evidence to provide guidelines for the care of women with chronic fatigue syndrome during pregnancy, labor and birth, lactation, and the postpartum period.

 

Source: Allen PR. Chronic fatigue syndrome: implications for women and their health care providers during the childbearing years. J Midwifery Womens Health. 2008 Jul-Aug;53(4):289-301; quiz 399. doi: 10.1016/j.jmwh.2007.12.001. https://www.ncbi.nlm.nih.gov/pubmed/18586181

 

Determinants of health care use in chronic fatigue syndrome patients: a cross-sectional study

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is associated with a high use of health care services. To reduce the related costs for patients and society, it will be useful to know which factors determine CFS patients’ amount of health care use. Little is known, however, about these factors.

METHOD: The present study retrospectively performed a cross-sectional analysis to investigate the possible factors determining CFS patients’ health care use. A total of 263 CFS patients, derived from two subgroups (149 from tertiary care and 114 from primary/secondary care), participated. Health care use was measured with a questionnaire asking details on consumption over the past 6 months. Fatigue severity and physical functioning were measured with the subscale Experienced Fatigue of the Checklist Individual Strength (CIS-20) and the subscale Physical Functioning of the SF-36, respectively. Multiple regression analysis, T-tests, and chi(2) tests were performed.

RESULTS: The regression analysis revealed that, after controlling for patient characteristics (explaining 13%), fatigue factors added 4% predictive value and certain perpetuating factors of fatigue, including focus on bodily symptoms and attributions of fatigue, added another 5%. The analysis of subgroups revealed that, compared to the tertiary care population, fewer patients from primary/secondary care had visited a medical specialist (50% vs. 71%), used antidepressants (16% vs. 25%) and tranquilizers (3% vs. 18%), and had spent a night in hospital (7% vs. 10%). However, overall costs of health care between these subgroups did not differ.

CONCLUSIONS: This study showed that illness duration, physical impairment due to fatigue, and psychological perpetuating factors of fatigue do determine the variance in CFS patients’ health care use. These results give clear directions for treating CFS patients and managing health care for CFS.

 

Source: Scheeres K, Wensing M, Severens H, Adang E, Bleijenberg G. Determinants of health care use in chronic fatigue syndrome patients: a cross-sectional study. J Psychosom Res. 2008 Jul;65(1):39-46. doi: 10.1016/j.jpsychores.2008.03.015. Epub 2008 May 22. https://www.ncbi.nlm.nih.gov/pubmed/18582610