How do women with lupus manage fatigue? A focus group study

Objective

Half of patients with systemic lupus erythematosus (SLE) consider fatigue to be the most disabling disease symptom. To develop and promote strategies to prevent and control fatigue, this study aimed to describe how women with SLE manage the experience of fatigue.

Methods

Four focus groups were conducted with 27 women with SLE, and data were analyzed by means of framework analysis. Two patient representatives with SLE were part of the investigator team.

Results

The analysis revealed three main themes (i.e., learning how to be open about fatigue, learning to listen to the body, and learning to accept fatigue) and six sub-themes (i.e., the search for recognition, legitimization, planning and prioritizing, the body’s limits and self-indulgence, adjusting life to comply with resources, and acceptance of dependence).

Conclusion

Fatigue is the controlling element in everyday life of women with SLE. Patients try to integrate fatigue into their everyday lives by attempting to control it and meet the challenges of structure and planning. This study indicates a need for clinicians to acknowledge patients’ fatigue, including supporting patients’ own resources, offering information, and conversation about fatigue, as well as involving patients’ relatives.

     

How do gastroenterologists follow patients with colorectal cancer after curative surgical resection? A three-year population-based study

OBJECTIVES: To assess the contribution of gastroenterologists (GEs) to the surveillance of colorectal cancer after curative surgery. PATIENTS AND METHODS: This registry-based study included 407 patients residing in two French administrative areas diagnosed with newly diagnosed colorectal cancer in 1998 and free of disease six months after curative surgery. All surveillance examinations performed either in the three years after surgery or until death or recurrence were collected retrospectively. RESULTS: One hundred nine patients (27%) had a regular clinical check-up with a GE at least once a year. Factors independently associated with GE follow-up were young age (P=0.004), use of adjuvant chemotherapy (P=0.013), and surgeon follow-up (P=0.068). GEs ordered 84% of colonoscopies, 44% of abdominal ultrasound examinations and 52% of abdominal CT scans. They detected 35% of recurrences. A significant proportion of patients (20%) had no regular follow-up, irrespective of the physicians involved. CONCLUSIONS: GEs play a modest role in the routine follow-up of patients with colorectal cancer, but are largely involved in ordering surveillance tests. They might play an important role in the surveillance of patients who presently have poor access to health care.     

Why do patients with hypopituitarism still present an increased mortality?

Hypopituitarism is defined as a lack or decreased secretion of one or several pituitary hormones. It can result from diseases of the pituitary gland or from pathologies of the superior regulatory center, i.e. the hypothalamus, thereby decreasing hypothalamic releasing hormones and consequently the pituitary hormones. It is still a rare disease with an estimated prevalence of 30–45 patients/100,000 and an incidence of 4–5/100,000/year. This review summarizes the currently available data with a focus on etiologies of hypopituitarism, evidence on mortality rates in patients with hypopituitarism, temporal trends in mortality , and associated diseases, pathophysiological mechanisms and risk factors that affect mortality risk in these patients.     

How do patients with heart failure with preserved ejection fraction die?

Understanding how patients with heart failure with preserved ejection fraction (HFPEF) die provides insight into the natural history and pathophysiology of this complex syndrome, thereby allowing better prediction of response to therapy in designing clinical trials. This review summarizes the current state of knowledge surrounding mortality rates, modes of death, and prognostic factors in HFPEF. Despite the lack of uniform reporting, the following conclusions may be drawn from previous studies. The mortality burden of HFPEF is substantial, ranging from 10% to 30% annually, and higher in epidemiological studies than in clinical trials. Mortality rates compared with heart failure with reduced ejection fraction (HFREF) appear to be strongly influenced by the type of study, but are clearly elevated compared with age‐ and co‐morbidity‐matched controls without heart failure. The majority of deaths in HFPEF are cardiovascular deaths, comprising 51–60% of deaths in epidemiological studies and ～70% in clinical trials. Among cardiovascular deaths, sudden death and heart failure death are the leading cardiac modes of death in HFPEF clinical trials. Compared with HFREF, the proportions of cardiovascular deaths, sudden death, and heart failure deaths are lower in HFPEF. Conversely, non‐cardiovascular deaths constitute a higher proportion of deaths in HFPEF than in HFREF, particularly in epidemiological studies, where this difference may be related to fewer coronary heart deaths in HFPEF. Key mortality risk factors, including age, gender, body mass index, burden of co‐morbidities, and coronary artery disease, offer some explanation for the differences in mortality rates observed across studies.     

How do health care professionals assess patients when initiating insulin therapy? A qualitative study

AimsTo explore how health care professionals (HCPs) assess patients when initiating insulin therapy in type 2 diabetes.MethodsFocus group discussions and in-depth interviews were conducted with 41 health care professionals in Malaysia in 2010–2011. A semi-structured topic guide was used for the interview. The interviews were transcribed verbatim and analysed using the Nvivo9 software based on a thematic approach.ResultsHCPs were less likely to initiate insulin therapy in patients who were older, with irregular dietary patterns and poor financial status. They also assessed patients’ knowledge, views and misconceptions of insulin. However, there was a variation in how doctors assessed patients’ comorbidities before starting insulin therapy. Medical officers were more likely to initiate insulin therapy in patients with comorbidities and complications, whereas family medicine specialists were more cautious. In addition, most HCPs considered patients’ psychosocial status, including self-care ability, social support and quality of life.ConclusionsHCPs’ assessment of patients’ need to start insulin therapy depends on their perception rather than objective evaluation of patients’ background, knowledge, perception and abilities. The background and the type of practice of HCPs influence their assessment.     

How do patients with asthma and COPD behave during fasting?

Background-objectiveSeveral factors might affect the adherence to treatment in patients with asthma and COPD. Among these factors, the effect of religious beliefs and behaviours has been less studied so far. In this study, the effect of fasting on drug use behaviours of patients with asthma and COPD were comparatively analysed.MethodsA total of 150 adult patients with asthma and 150 adult patients with COPD were consecutively enrolled into this cross-sectional study. The patients were asked whether they fast during Ramadan and if the answer was yes, they were kindly asked to respond to further questions related to use of inhaled medications during that particular time.ResultsThe majority of the cases from both groups [98 (65.3%) of asthma patients and 139 (92.6%) of COPD] were fasting during Ramadan. The majority of the patients with COPD (n = 126; 90.6%) reported that they quitted their regular therapy basis during Ramadan. On the other hand, the majority of asthma patients used their controller inhaled medications during Ramadan and preferred to use them on iftar and sahur times (n = 81, 82.6%).ConclusionOur results showed that in a Muslim population, the patients with asthma and COPD do not feel their diseases to be an inhibitory factor for fasting during Ramadan. However, fasting seems to be an important determining factor in medication compliance by modifying the drug use behaviours in each group in a different way. Therefore, the patients should be informed about the effects of fasting on their disease and the allowed drugs during fasting.     

How do you treat patients with myalgia who take statins?

3-Hydroxy-3-methylglutaryl coenzyme A (HMG-CoA) reductase inhibitors (statins) are safe and effective in lowering low-density lipoprotein cholesterol. As a result, they confer an all-cause mortality benefit across a wide range of patient groups. The utility of statins is limited by their adverse effects, including myalgias and rhabdomyolysis. These clinical events, plus other symptoms, constitute what is termed statin myopathy. This review summarizes current concepts of statin myopathy and presents strategies to minimize statinassociated myopathic complaints.     

How well do doctors know their patients with severe asthma?

Abstract
Background:  Rates of asthma mortality have fallen in Australia since the commencement of the National Asthma Campaign and promotion of the Australian asthma management plan. New strategies are now needed to further reduce mortality.
Aim:  To examine agreement about key features between asthma patients and their general practitioners (GPs).
Methods:  We interviewed: (i) the next of kin of 56 asthma deaths, (ii) 91 asthma patients presenting to emergency departments with acute severe asthma and (iii) 147 of their GPs.
Results:  Agreement was substantial for usage of oral symptomatic medication, but poor for inhaled symp­tomatic and preventive medications. There was moderate agreement regarding hospital admissions within the last 12 months among the cases, but little about other markers of severity. There was moderate agreement where the presenting or fatal attack was triggered by an upper respiratory-tract infection or aspirin. The next of kin and GPs agreed about family problems, but not about other psychosocial issues. They also agreed about which cases had been given action plans or verbal instructions, but few other aspects of asthma management. There was also moderate agreement regarding the use of peak flow meters by the controls.
Conclusions:  Doctors often have relatively poor insights into self-management practices, social background or trigger factors, even in high-risk patients. This should be considered when planning future campaigns to improve asthma management and further reduce mortality. (Intern Med J 2003; 33: 557−565)     

How do we image patients with multiple myeloma and precursor states?

Advances in morphological and functional imaging have led to superior detection of early bone disease, bone marrow infiltration, paramedullary and extramedullary involvement in multiple myeloma. The two functional imaging modalities that are most widely used and standardized are 18F-fluorodeoxyglucose–Positron emission tomography/computed tomography (FDG PET/CT) and whole-body magnetic resonance imaging with diffusion-weighted imaging (WB DW-MRI). Both prospective and retrospective studies have demonstrated that WB DW-MRI is more sensitive than PET/CT in the detection of baseline tumour burden and to assess response after therapy. In patients with smouldering multiple myeloma, WB DW-MRI is now the preferred imaging modality to rule out two or more unequivocal lesions which would be considered a myeloma-defining event by the updated international myeloma working group (IMWG) criteria. In addition to sensitive detection of baseline tumour burden, both PET/CT and WB DW-MRI have been successfully used for monitoring response to therapy and provide information that is complementary to IMWG response assessment and bone marrow minimal residual disease. In this article, we present 3 vignettes illustrating how we approach the use of modern imaging in the management of patients with multiple myeloma and precursor states, with a specific focus on recent data that have emerged since the publication of the IMWG consensus guideline on imaging. We have utilized data from prospective and retrospective studies to provide a rationale for our approach to imaging in these clinical scenarios and highlighted knowledge gaps requiring future investigation.     

How do we offer clinical relief to patients with gastro-oesophageal reflux disease?

In gastro-oesophageal reflux disease (GORD), the majority of patients are endoscopy negative. However, symptoms can affect the quality of life irrespective of the presence of oesophagitis. Proton pump inhibitors (PPIs) are far more effective than H2 receptor antagonists (H2RAs) or prokinetics with regard to the speed of symptom relief. Despite this undisputed progress, there is some conflict on whether symptoms should be managed until full resolution in endoscopy-negative patients or in those with mild oesophagitis. Considering that GORD is not a life-threatening condition, some authorities admit that patients should accept minimal residual symptoms. They argue that PPIs are expensive while healthcare resources are limited, and that long-term safety of PPIs has not been completely established. Moreover, they underline that many patients do not seek medical help and are satisfied with self-medication (with antacids/alginates or even over-the-counter H2RAs). On the other hand, some clinicians prefer a full resolution of symptom strategy because this is now achievable with modern PPIs without serious concerns in terms of tolerance and safety. Indeed, quality of life is rapidly restored by PPIs. Moreover, symptom relief by PPIs is highly predictive of healing, making endoscopic control unnecessary at least for mild/moderate oesophagitis. Finally, there is also some controversy over whether we should start treatment with PPIs or use less potent drugs as first-line therapy. If one considers not only the direct cost of drugs, but also the indirect ones (e.g. sick leave days), it is reasonable to think that PPIs may be more cost-effective than H2RAs or prokinetics, at least when the disease is of moderate or severe intensity. In conclusion, with modern PPIs like lansoprazole, rapid and full resolution of symptoms is now achievable in the large majority of patients.     

How do patients with inflammatory bowel disease want their biological therapy administered?

Background  

Infliximab is usually administered by two monthly intravenous (iv) infusions, therefore requiring visits to hospital. Adalimumab is administered by self subcutaneous (sc) injections every other week. Both of these anti-TNF drugs appear to be equally efficacious in the treatment of Crohn's Disease and therefore the decision regarding which drug to choose will depend to some extent on patient choice, which may be based on the mode of administration.