Fatigue in patients with rheumatoid arthritis: British and Dutch nurses' knowledge, attitudes and management

Title: Fatigue in patients with rheumatoid arthritis: British and Dutch nurses' knowledge, attitudes and management. Aim: This paper is a report of a study conducted to compare the knowledge, attitudes and current management of rheumatoid arthritis-related fatigue in British and Dutch rheumatology nurses. Background: After pain, fatigue is the most important symptom for patients with rheumatoid arthritis, but little is known about the current management of this fatigue by healthcare professionals. Methods: A questionnaire was mailed in 2007 to rheumatology nurses who were members of British Health Professionals in Rheumatology (N = 267) and the Dutch Society of Rheumatology Nurses (N = 227). Descriptive statistics, independent samples t-test and Pearson chi-square tests were used for statistical analysis. Results: A total of 494 nurses returned questionnaires (response rate 48%). In general, their knowledge about rheumatoid arthritis fatigue was in accordance with the literature and all indicated a positive attitude towards assessing and managing rheumatoid arthritis-related fatigue. However, respondents reported contradictory views about managing fatigue. Although they believed that other team members could help patients, they seldom referred patients on to other professionals. Although nurses believed that other advice besides pacing and balance between activity and rest might help, they did not offer this to patients. Despite acknowledging that there is poor communication about fatigue between patients and nurses, respondents reported that it is patients rather than nurses who raise the issue of fatigue in consultations. Conclusion: British and Dutch rheumatology nurses are sympathetic but do not know how to manage rheumatoid arthritis-related fatigue. Strategies to support self-management for this fatigue, and to increase communication between healthcare professionals and patients, should be initiated to help improve patient outcomes for rheumatoid arthritis-related fatigue. © 2009 Blackwell Publishing Ltd

Patients' needs and expectations with regard to rheumatology nursing care:results of multicentre focus group interviews

<p>Objective The contribution of rheumatology nurses to improved patient outcomes is increasingly recognised but more research is needed about the effects of interventions. The patient's role in deciding about healthcare quality is considered pivotal and therefore patients' opinions and expectations should be directional in defining priorities for a research agenda. The objective of this study was to explore needs and expectations with regard to rheumatology nursing care in patients with chronic inflammatory arthritis (CIA).</p><p>Methods Patients aged 18-90 years from three medical clinics in different regions in The Netherlands were invited to participate in focus group interviews. The interviews were transcribed verbatim and independently analysed by the authors. In a consensus meeting the emerging subjects were categorised into themes which were verified in a fourth interview.</p><p>Results In total, 20 patients, mean age 57 years old, participated in the focus group interviews. The majority had rheumatoid arthritis and mean disease duration was 15 years. The focus group interviews revealed 12 subthemes that were organised into four main themes: education, self-management support, emotional support and well organised care. Additionally, patients considered opinions about 'the personality of the nurse' (eg, easy to talk to) to be important.</p><p>Conclusions Patients with CIA mentioned that many problems have to be addressed when one is faced with having a rheumatic disease. The focus group interviews yielded valuable information about the care these patients need and expect. This information will direct future research with regard to rheumatology nursing care.</p>

Need for online information and support of patients with Systemic Sclerosis

Objective Interactive health communication applications (IHCAs) offer interesting possibilities to support systemic sclerosis (SSc) patients, since SSc is an uncommon, severe disease that needs a multidisciplinary treatment. This study aimed to investigate patients' needs for a hospital-based IHCA. Methods A survey study was conducted among a large sample (n = 429) of SSc patients of the University Medical Centre St. Radboud in Nijmegen, The Netherlands. Patients were asked about their current disease-related internet use, their perceived importance of diverse information topics, and their usefulness of 8 widely used online health services. To examine how disease specific their needs were, the results of SSc patients were compared with the results of a sample of rheumatoid arthritis (RA) patients (n = 1,284). Results In total, 746 patients (44% of the approached patients) returned a completed questionnaire and fulfilled all of the inclusion criteria. Of them, 569 (76%) had internet access. SSc patients used the internet especially for information (85%), and they expressed a need for information on physical, psychological, and social consequences of the disease. Concerning a hospital-based IHCA, e-consults, information about disease and treatment, and home access to their electronic medical records were perceived as most useful. SSc patients were more positive about the usefulness of the online applications than were RA patients, especially for e-consults and peer support forums. Conclusion It would be valuable to offer SSc patients a hospital-based IHCA, including the online information and support they desire. When taking the needs of patients into account, an IHCA could become a valuable addition to their regular treatment

A glucocorticoid education group meeting: an effective strategy for improving self-management to prevent adrenal crisis

Item does not contain fulltextOBJECTIVE: To assess self-management in patients receiving glucocorticoid replacement therapy for primary or secondary adrenal failure before and 6 months after a glucocorticoid education group meeting. METHODS: All patients with primary or secondary adrenal insufficiency, treated at the Department of Medicine, Division of Endocrinology, were invited by their endocrinologist to participate in a 3-h glucocorticoid education group meeting, consisting of a lecture about the disease and glucocorticoid doses adjustments in case of stress, followed by an instruction on how to inject hydrocortisone i.m. Finally, all participants could practise the i.m. injection and discuss their experience with (imminent) adrenal crises with other patients and the health care providers. Two weeks before the meeting and 6 months after the meeting, patients were asked to fill out a questionnaire about how they would act in six different conditions (e.g. febrile illness or vomiting). RESULTS: Of the 405 patients who were invited, 246 patients (61%) participated. At baseline the response by the participants on the questionnaire was 100% (n=246) and at follow-up 74% (n=183). At follow-up, significantly more participants (P</=0.005) gave the correct answers to how to act in different situations (e.g. self-administration of a glucocorticoid injection and phone contact in case of vomiting/diarrhoea without fever). Moreover, the use of self-management tools, such as having a 'medicine passport (travel document with information about disease and medication) (P=0.007) or SOS medallion (P=0.0007)', increased. CONCLUSION: A glucocorticoid education group meeting for patients with adrenal failure seems helpful to improve self-management and proper use of stress-related glucocorticoid dose adjustment

High level of distress in long-term survivors of thyroid carcinoma: results of rapid screening using the distress thermometer

Item does not contain fulltextCONTEXT: Cancer patients are at increased risk for distress. The Distress Thermometer (DT) and problem list (PL) are short-tools validated and recommended for distress screening in cancer patients. OBJECTIVE: To investigate the level of distress and problems experienced by survivors of differentiated non-medullary thyroid carcinoma (DTC), using the DT and PL and whether this correlates with clinical and demographical variables. PARTICIPANTS, DESIGN AND SETTING: All 205 DTC patients, under follow-up at the outpatient clinic of our university hospital, were asked to fill in the DT and PL, hospital anxiety and depression scale (HADS), illness cognition questionnaire (ICQ) and an ad hoc questionnaire. Receiver Operator Characteristic analysis (ROC) was used to establish the optimal DT cut-off score according to HADS. Correlations of questionnaires scores with data on diagnosis, treatment and follow-up collected from medical records were analyzed. RESULTS: Of the 159 respondents, 145 agreed to participate [118 in remission, median follow-up 7.2 years (range 3 months-41 years)]. Of these, 34.3% rated their distress score >/=5, indicating clinically relevant distress according to ROC analysis. Patients reported physical (86%) over emotional problems (76%) as sources of distress. DT scores correlated with HADS scores and ICQ subscales. No significant correlations were found between DT scores and clinical or demographical characteristics except for employment status. CONCLUSION: Prevalence of distress is high among patients with DTC even after long-term remission and cannot be predicted by clinical and demographical characteristics. DT and PL are useful screening instruments for distress in DTC patients and could easily be incorporated into daily practice