Web usage data as a means of evaluating public health messaging and outreach.

BACKGROUND: The Internet is increasingly utilized by researchers, health care providers, and the public to seek medical information. The Internet also provides a powerful tool for public health messaging. Understanding the needs of the intended audience and how they use websites is critical for website developers to provide better services to the intended users. OBJECTIVE: The aim of the study was to examine the utilization of the chronic fatigue syndrome (CFS) website at the Centers for Disease Control and Prevention (CDC). We evaluated (1) CFS website utilization, (2) outcomes of a CDC CFS public awareness campaign, and (3) user behavior related to public awareness campaign materials and CFS continuing medical education courses. METHODS: To describe and evaluate Web utilization, we collected Web usage data over an 18-month period and extracted page views, visits, referring domains, and geographic locations. We used page views as the primary measure for the CFS awareness outreach effort. We utilized market basket analysis and Markov chain model techniques to describe user behavior related to utilization of campaign materials and continuing medical education courses. RESULTS: The CDC CFS website received 3,647,736 views from more than 50 countries over the 18-month period and was the 33rd most popular CDC website. States with formal CFS programs had higher visiting density, such as Washington, DC; Georgia; and New Jersey. Most visits (71%) were from Web search engines, with 16% from non-search-engine sites and 12% from visitors who had bookmarked the site. The public awareness campaign was associated with a sharp increase and subsequent quick drop in Web traffic. Following the campaign, user interest shifted from information targeting consumer basic knowledge to information for health care professionals. The market basket analysis showed that visitors preferred the 60-second radio clip public service announcement over the 30-second one. Markov chain model results revealed that most visitors took the online continuing education courses in sequential order and were less likely to drop out after they reached the Introduction pages of the courses. CONCLUSIONS: The utilization of the CFS website reflects a high level of interest in the illness by visitors to the site. The high utilization shows the website to be an important online resource for people seeking basic information about CFS and for those looking for professional health care and research information. Public health programs should consider analytic methods to further public health by understanding the characteristics of those seeking information and by evaluating the outcomes of public health campaigns. The website was an effective means to provide health information about CFS and serves as an important public health tool for community outreach.

When a parent is chronically ill: chronic fatigue syndrome.

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.

Multiple sclerosis beyond EDSS: depression and fatigue.

Depression and fatigue are common symptoms of multiple sclerosis and are the primary determinants of impaired quality of life in this demyelinating neurological disease. The twelve-month prevalence of major depression in patients with multiple sclerosis is around 15%. Untreated depression is associated with suicidal ideation, impaired cognitive function and poor adherence to immunomodulatory treatment. For these reasons, systematic screening and management of depressive symptoms is recommended for all patients with multiple sclerosis. There is some evidence that interferon-beta treatment may exacerbate depressive symptoms and a switch to glatiramer acetate can be envisaged in patients treated with an interferon-beta in whom depressive symptoms become an issue. Fatigue is present in over three-quarters of patients with multiple sclerosis. It is considered the most debilitating symptom of the disease and is a major reason for work absenteeism. There is growing evidence that immunomodulatory treatments, in particular glatiramer acetate, improve fatigue symptoms in patients with multiple sclerosis.

[Report from the Health Council of the Netherlands on the chronic fatigue syndrome: moving away from the body-mind dichotomy with a view to effective prevention and treatment]. / Gezondheidsraadrapport 'Het chronische-vermoeidheidssyndroom'; terechte afstand van de lichaam-geestdichotomie met het oog op effectieve preventie en behandeling.

The Health Council of the Netherlands has issued a report on the chronic fatigue syndrome (CFS). CFS is a real and seriously debilitating condition which imposes limitations on an individual's personal, occupational and social functioning. It is a syndrome of unknown aetiology without physical signs or biological markers. Although there is no disease, patients both feel ill and give the appearance of being ill. There is no consensus on whether CSF patients are able to work or whether they should be entitled to social security benefits. An imbalance between demand and coping is central in CFS, with stress as an important intermediary factor. It is little use concluding that unexplained signs are 'psychological' or that 'I cannot find anything wrong with you so you must be healthy'. The classical view that mind and body are separate systems is outmoded. The bio-psycho-social model of disease may be helpful in describing the interaction between body, mind and circumstance. Putting the CFS patient at ease and explaining the pathophysiology of the symptoms is a useful approach but many patients and patient associations are still very somatically orientated, thereby sustaining the condition. However, in patients who accept that their problems may be stress-induced and are prepared to participate in therapy, some therapies have been proven to be effective, notably cognitive behavioural therapy.

Sociodemographic and symptom correlates of fatigue in an adolescent primary care sample.

PURPOSE: To describe the prevalence of prolonged fatigue, chronic fatigue syndrome (CFS)-like illness, and associated symptom patterns in adolescents attending primary care. METHODS: The design was cross-sectional. A questionnaire designed by the authors assessing fatigue and associated symptoms was administered to 901 adolescents (aged 11-18 years) attending 12 primary care clinics in the Chicago area. Prevalence rates for prolonged fatigue and CFS-like illness were calculated. Univariate comparisons involving sociodemographic data and fatigue severity were made between adolescents with and without prolonged fatigue, and sociodemographic and symptom predictors of prolonged fatigue were identified using logistic regression analysis. RESULTS: Prolonged fatigue (> or = 1 month) occurred at a rate of 8.0% and CFS-like illness occurred at a rate of 4.4%. Adolescents with prolonged fatigue were significantly older and also reported greater fatigue severity than those without fatigue. Findings from logistic regression indicated that, in addition to increasing age, headaches, muscle pains, fever, and fatigue made worse by exercise were significantly associated with prolonged fatigue. CONCLUSIONS: Abnormal fatigue is a disabling and prevalent condition in adolescents in primary care. It is associated with a number of additional symptoms, many of which may have viral origins.

Death of a lifestyle: the effects of social support and healthcare support on the quality of life of persons with fibromyalgia and/or chronic fatigue syndrome.

PURPOSE: The purpose of this study was to investigate how social support and healthcare support affect the quality of life of persons with fibromyalgia and chronic fatigue syndrome. METHOD: A constant comparison method was used for the qualitative portion of the research and descriptive correlational methods were used for the quantitative portion. CONCLUSION: This mixed design research study suggested that social support, unlike healthcare support, is related to Quality of Life (QOL). It was also evident that subjects suffering from CFS and/or FMS do not experience high levels of social support.