A multidimensional 'path analysis' model of factors explaining fatigue in rheumatoid arthritis.

OBJECTIVES: Fatigue is one of the most commonly reported symptoms in rheumatoid arthritis (RA). Many factors may play a causal role on fatigue in RA patients, but their contribution and interplay is barely understood. The objective was to develop a multidimensional model of factors that explain fatigue severity in RA. METHODS: A cross-sectional study (n=228) of consecutive patients with RA was performed. Fatigue, disease characteristics and psychosocial and behavioural outcomes were collected. Baseline differences between non severely fatigued patients (CIS-fatigue <35) and severely fatigued patients (CIS-fatigue ≥35) were tested. Structural equation modeling was used to test a hypothesised model for fatigue. RESULTS: The final model includes pain, physical functioning, mood, sense of control, sleep quality and fatigue, with good fit (CFI=0.976) explaining 74% of the variance in RA fatigue. Accordingly, poor sleep quality (ß=0.42, p<0.001) and less physical functioning (ß=0.65, p<0.001) are directly related to a higher level of fatigue. Less sense of control is related to more mood disturbance (ß=0.64, p<0.001), more pain (ß=0.389, p<0.001) and less physical functioning (ß=-0.24, p<0.001). More mood disturbance is related to poor sleep quality (ß=0.78, p<0.001) and higher pain level is related to less physical functioning (ß=0.75, p<0.001). CONCLUSIONS: RA fatigue is directly influenced by poor sleep quality and physical functioning, and indirectly by sense of control, mood and pain. Treatment of these factors by psychological interventions and physical exercise could help to improve fatigue in patients with RA.

The contribution of online peer-to-peer communication among patients with adrenal disease to patient-centered care.

BACKGROUND: Addison's disease and Cushing's syndrome are rare. The Dutch Adrenal Society offers an online forum for Dutch adrenal patients to meet and communicate. However, little is known about the added value such a forum has for the delivery of patient-centered care. OBJECTIVE: Our aim was to analyze the purposes of online patient-to-patient forum conversations, within the context of patient-centered care. METHODS: For this study a consecutive sample of 300 questions ("threads") from the past 3.5 years was selected from the forum. The content of these patient-driven questions was analyzed based on the dimensions of patient-centeredness of the Picker Institute. This analysis was performed using ATLAS.ti. RESULTS: From the 390 questions analyzed, 80.8% (N=315) were intended to gain more information about the disease, the treatment, and to verify if other patients had similar complaints. To a much lesser extent (38/390, 9.7%), questions expressed a call for emotional support. Patients answered primarily by giving practical tips to fellow patients and to share their own experiences. CONCLUSIONS: On an online patient forum for Cushing's syndrome and Addison's disease, patients appear to primarily gain knowledge and, to a lesser extent, emotional support from their peers. This experience-based knowledge has become a very important information source. As such, patients can make a substantial contribution to the creation of patient-centered care if this knowledge is integrated into the care provided by health care professionals.

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

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). 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. 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. 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.

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

CONTEXT: 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.

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.

Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study.

OBJECTIVE: Interest in fatigue research has grown since the finding that fatigue is, besides pain, the symptom most frequently reported by patients with rheumatoid arthritis (RA). The aim of this study was to explore the experience of fatigue from the patients' perspective. METHODS: Twenty-nine patients with RA filled-out written questionnaires on fatigue severity, disability, quality of life and sleep disturbance, and disease activity was calculated using the Disease Activity Score (DAS28). All patients were individually interviewed and asked about fatigue. Qualitative analyses were completed using software program "The Observer". Basic codes, a code plan and coding rules were developed by two researchers through a consensus-based review process. Frequencies of the central codes were calculated by the program SPSS. RESULTS: RA fatigue is verbalised as a physical everyday experience with a variety in duration and intensity. Its sudden onset and exhausting nature is experienced as frustrating and causing anger. Patients mentioned having RA as the main cause of their fatigue. The consequences of fatigue are overwhelming and influence patients' everyday tasks, attitudes and leisure time. Patients described how they have to find their own management strategies by trial and error and described pacing and rest, relaxation and planning activities as the most appropriate interventions. Downward comparison and acceptance as part of the disease are also reported as successful coping strategies for fatigue. Most patients did not discuss fatigue with clinicians explicitly, accepting that they were told that fatigue is part of the disease and believing that they have to manage it alone. CONCLUSION: The results show that RA fatigue is experienced as being different from "normal" fatigue. Patients do not expect much support from health care professionals, assuming that they have to manage fatigue alone as it is part of the disease. These results will help professionals caring for RA patients to communicate about fatigue, to explore the nature of fatigue individually and to develop tailored interventions.

Persistent severe fatigue in patients with rheumatoid arthritis.

AIM: To determine whether persistent severe fatigue in patients with rheumatoid arthritis can be predicted by inflammation and disability. METHODS: A follow-up study with a one-year duration was performed. From an existing rheumatoid arthritis cohort, 150 consecutive patients, with established rheumatoid arthritis, were asked to assess fatigue, using the subscale Checklist Individual Strength-fatigue of the Checklist Individual Strength at baseline and 12 months later. The Checklist Individual Strength-fatigue scores were classified into 'normal' (score between 8-27), 'moderate' (score between 27-34) or 'severe' (score 35 or above) fatigue. Disease-related variables were: tender joints, swollen joints, general health, disability and laboratory measures (erythrocyte sedimentation rate, rheumatoid factor and haemoglobin). Predictors of persistent severe fatigue were identified by multiple logistic regression analyses with backward selection (selection criteria: p<0.05). RESULTS: At baseline, 137 patients agreed to participate and 123 patients completed the study. Severe fatigue was experienced by as many as 50% of the patients, both at baseline and at the end of the study (n = 123). Moreover, 49 patients (40%) experienced severe fatigue at baseline as well as at follow-up, which we called 'persistent severe fatigue'. Persistent severe fatigue was predicted by mean general health and disability at baseline [odds ratio (OR) = 2.03 and 2.83, respectively] in this group of rheumatoid arthritis patients with a low-to-moderate level of disease activity and disability. CONCLUSION: The data show that severe fatigue is not resolved spontaneously in rheumatoid arthritis patients, and persistent severe fatigue is mainly predicted by general health and disability. The relation with inflammation or a low level of haemoglobin, which is often assumed in clinical practice, was not found. RELEVANCE TO CLINICAL PRACTICE: Fatigue in patients with rheumatoid arthritis has to be considered as a symptom that needs to be addressed by professionals in the same way as pain and disability. In current care, fatigue is insufficiently addressed.

Enhanced self-efficacy after a self-management programme in pituitary disease: a randomized controlled trial.

CONTEXT: Patients with pituitary disease report impairments in Quality of Life (QoL) despite optimal biomedical care. Until now, the effects of a self-management intervention (SMI) addressing psychological and social issues for these patients and their partners have not been studied. OBJECTIVE: To examine the effects of a SMI i.e. Patient and Partner Education Programme for Pituitary disease (PPEP-Pituitary). DESIGN AND SUBJECTS: A multicentre randomized controlled trial included 174 patients with pituitary disease, and 63 partners were allocated to either PPEP-Pituitary or a control group. PPEP-Pituitary included eight weekly sessions (90 min). Self-efficacy, bother and needs for support, illness perceptions, coping and QoL were assessed before the intervention (T0), directly after (T1) and after six months (T2). Mood was assessed before and after each session. RESULTS: Patients in PPEP-Pituitary reported improved mood after each session (except for session 1). In partners, mood only improved after the last three sessions. Patients reported higher self-efficacy at T1 (P = 0.016) which persisted up to T2 (P = 0.033), and less bother by mood problems directly after PPEP-Pituitary (P = 0.01), but more bother after six months (P = 0.001), although this increase was not different from baseline (P = 0.346). Partners in PPEP-Pituitary reported more vitality (P = 0.008) which persisted up to T2 (P = 0.034). At T2, partners also reported less anxiety and depressive symptoms (P ≤ 0.014). CONCLUSION: This first study evaluating the effects of a SMI targeting psychosocial issues in patients with pituitary disease and their partners demonstrated promising positive results. Future research should focus on the refinement and implementation of this SMI into clinical practice.

An Online Tailored Self-Management Program for Patients With Rheumatoid Arthritis: A Developmental Study.

BACKGROUND: Every day rheumatoid arthritis (RA) patients make many decisions about managing their disease. An online, computer-tailored, self-management program can support this decision making, but development of such a program requires the active participation of patients. OBJECTIVE: To develop an online, computer-tailored, self-management program integrated with the nursing care, as nurses have an important role in supporting self-management behavior. METHODS: The intervention mapping framework was used to develop the program. Development was a multistep process: (1) needs assessment; (2) developing program and change objectives in a matrix; (3) selecting theory-based intervention methods and practical application strategies; (4) producing program components; (5) planning and adoption, implementation, and sustainability; and (6) planning for evaluation. RESULTS: After conducting the needs assessment (step 1), nine health-related problems were identified: (1) balancing rest and activity, (2) setting boundaries, (3) asking for help and support, (4) use of medicines, (5) communicating with health professionals, (6) use of assistive devices, (7) performing physical exercises, (8) coping with worries, and (9) coping with RA. After defining performance and change objectives (step 2), we identified a number of methods which could be used to achieve them (step 3), such as provision of general information about health-related behavior, self-monitoring of behavior, persuasive communication, modeling, and self-persuasion and tailoring. We described and operationalized these methods in texts, videos, exercises, and a medication intake schedule. The resulting program (step 4) consisted of an introduction module and nine modules dealing with health-related problems. The content of these modules is tailored to the user's self-efficacy, and patients can use the online program as often as they want, working through a module or modules at their own speed. After implementation (step 5), the program will be evaluated in a two-center pilot trial involving 200 RA patients. Log-in data and qualitative interviews will used for a process evaluation. CONCLUSIONS: The intervention mapping framework was used to guide development of an online computer-tailored self-management program via a process which could serve as a model for the development of other interventions. A pilot randomized controlled trial (RCT) will provide insight into the important outcome measures in preparation for a larger RCT. The process evaluation will provide insight into how RA patients use the program and the attrition rate. TRIAL REGISTRATION: Netherlands Trial Register (NTR): NTR4871; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4871 [accessed 13-NOV-15] http://www.webcitation.org/6d1ZyIoEy.

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

OBJECTIVE: 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.

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.

Fatigue communication at the out-patient clinic of Rheumatology.

OBJECTIVE: To describe nurse-patient and rheumatologist-patient interaction in fatigue communication at the rheumatology out-patient clinic. METHODS: Consultations of 20 rheumatoid arthritis (RA) patients with the nurse specialist and the rheumatologist were videotaped and analysed using the Medical Interview Aural Rating Scale (MIARS). Subsequently, patients were asked to fill out a concern questionnaire asking how worried they felt and how satisfied they were with attention given by both healthcare professionals. Finally, patients were interviewed on reasons for being not or not completely satisfied with the care received. RESULTS: Fatigue was discussed in 42% of the rheumatologists' consultations and 83% of the nurse specialists' consultations. RA patients more often used implicit cues instead of explicit concerns related to fatigue. Almost 72% of the patients felt worried about fatigue and in general they were more satisfied with the nurse specialist's attention to fatigue than with the attention from the rheumatologist. CONCLUSION: Fatigue is not structurally communicated at the rheumatology out-patient clinic and exploring and acknowledging communication techniques can help patients to express their concerns about fatigue. PRACTICE IMPLICATIONS: Healthcare professionals must recognise fatigue as a severe problem for RA patients and start the conversation on fatigue instead of waiting for the patient to mention fatigue spontaneously.

Rheumatologists' knowledge, attitude and current management of fatigue in patients with rheumatoid arthritis (RA).

To describe rheumatologists' knowledge, attitude and current management of fatigue in patients with rheumatoid arthritis (RA), a postal questionnaire was sent to all rheumatologists (N = 204) and trainees (N = 49), members of the Dutch Society of Rheumatology. The overall response rate was 44% (N = 110). In general, rheumatologists' knowledge about RA-related fatigue was in accordance with the literature but they perceive a lack of their own knowledge about aetiology and evidence-based interventions to prevent and treat fatigue. The majority of the rheumatologists believe that fatigue is a multi-disciplinary diagnosis and is preferably managed by the nurse specialist (34%). Assuming that the patient will raise the issue, most of the rheumatologists pay attention to fatigue during the first consultation and less often during follow-up consultations. There is a need for knowledge about causes and treatments for RA-related fatigue to ensure that patient outcomes are improved.