Stephanie Nikolaus

Fatigue and Factors Related to Fatigue in Rheumatoid Arthritis: A Systematic Review

Although patients with rheumatoid arthritis (RA) experience fatigue, little is known about its causes and consequences, and a fully developed theoretical model explaining the experience of fatigue in RA is lacking. Our goal was to systematically review studies in RA that examined factors related to fatigue to gain more insight into its possible causes and consequences.

Selection of items for a computer-adaptive test to measure fatigue in patients with rheumatoid arthritis - A Delphi approach

PurposeComputer-adaptive tests (CATs) can measure precisely at individual level with few items selected from an item bank. Our aim was to select fatigue items to develop a CAT for rheumatoid arthritis (RA) and include expert opinions that are important for content validity of measurement instruments.MethodsItems were included from existing fatigue questionnaires and generated from interview material. In a Delphi procedure, rheumatologists, nurses, and patients evaluated the initial pool of 294 items. Items were selected for the CAT development if rated as adequate by at least 80% of the participants (when 50% or less agreed, they were excluded). Remaining items were adjusted based on participants’ comments and re-evaluated in the next round. The procedure stopped when all items were selected or rejected.ResultsA total of 10 rheumatologists, 20 nurses, and 15 rheumatoid arthritis patients participated. After the first round, 96 of 294 items were directly selected. Nine items were directly excluded, and remaining items were adjusted. In the second round, 124 items were presented for re-evaluation. Ultimately, 245 items were selected.ConclusionThis study revealed a qualitatively evaluated item pool to be used for the item bank/CAT development. The Delphi procedure is a beneficial approach to select adequate items for measuring fatigue in RA.

Cognitive behaviour therapy for chronic fatigue syndrome: Differences in treatment outcome between a tertiary treatment centre in the United Kingdom and the Netherlands

OBJECTIVE Cognitive behaviour therapy (CBT) reduces fatigue and disability in chronic fatigue syndrome (CFS). However, outcomes vary between studies, possibly because of differences in patient characteristics, treatment protocols, diagnostic criteria and outcome measures. The objective was to compare outcomes after CBT in tertiary treatment centres in the Netherlands (NL) and the United Kingdom (UK), using different treatment protocols but identical outcome measures, while controlling for differences in patient characteristics and diagnostic criteria. METHODS Consecutively referred CFS patients who received CBT were included (NL: n=293, UK: n=163). Uncontrolled effect sizes for improvement in fatigue (Chalder Fatigue Questionnaire), physical functioning (SF-36 physical functioning subscale) and social functioning (Work and Social Adjustment Scale) were compared. Multiple regression analysis was used to examine whether patient differences explained outcome differences between centres. RESULTS Effect sizes differed between centres for fatigue (Cohens D NL=1.74, 95% CI=1.52-1.95; UK=0.99, CI=0.73-1.25), physical functioning (NL=0.99, CI=0.81-1.18; UK=0.33, CI=0.08-0.58) and social functioning (NL=1.47, CI=1.26-1.69; UK=0.61, CI=0.35-0.86). Patients in the UK had worse physical functioning at baseline and there were minor demographic differences. These could not explain differences in centre outcome. CONCLUSION Effectiveness of CBT differed between treatment centres. Differences in treatment protocols may explain this and should be investigated to help further improve outcomes.

Severe fatigue in type 1 diabetes: Exploring its course, predictors and relationship with HbA1c in a prospective study

AIMS To prospectively identify the course of severe fatigue, its predictors and the relationship with HbA1c in patients with type 1 diabetes. METHODS 214 adult patients completed questionnaires on fatigue severity and fatigue-related factors at baseline. HbA1c was retrieved from medical records. After 43months, fatigue severity and HbA1c were reassessed in 194 patients. A logistic regression analysis was used to determine predictors of severe fatigue at follow-up with various cognitive-behavioral and clinical factors as potential predictors. The relationship between fatigue and HbA1c was investigated in a sub-analysis by differentiating between patients with suboptimal glucose control [HbA1c>7% (53mmol/mol)] and optimal glucose control [HbA1c⩽7% (53mmol/mol)]. RESULTS The prevalence of severe fatigue was 40% at baseline and 42% at follow-up. In three out of four severely fatigued patients at baseline (76%), severe fatigue persisted over time. More depressive symptoms, more pain, sleep disturbances, lower self-efficacy concerning fatigue, less confidence in diabetes self-care, more fatigue severity at baseline and more diabetes complications predicted severe fatigue at follow-up. Over time, HbA1c at baseline was positively associated with fatigue severity at follow-up in both groups (suboptimal glucose control: r=.18, p<.05; optimal glucose control: r=.09, p<.05). CONCLUSIONS About three quarters of fatigued[corrected] patients with type 1 diabetes suffer from persistent fatigue. Aside from the number of diabetes complications, no clinical factors explained the persistence of fatigue. HbA1c and fatigue were weakly associated in a sub-analysis. Since the strongest predictors of severe fatigue were cognitive-behavioral factors, behavioral interventions might be effective in decreasing fatigue.

A comparison of patients with Q fever fatigue syndrome and patients with chronic fatigue syndrome with a focus on inflammatory markers and possible fatigue perpetuating cognitions and behaviour

OBJECTIVE Comparison of Q fever fatigue syndrome (QFS) and chronic fatigue syndrome (CFS) patients, with a focus on markers of inflammation and fatigue-related cognitive-behavioural variables. METHODS Data from two independent prospective studies on QFS (n=117) and CFS (n=173), respectively, were pooled and analyzed. RESULTS QFS patients were less often female, had a higher BMI, and had less often received treatment for depression before the onset of symptoms. After controlling for symptom duration and correcting for differences in diagnostic criteria for QFS and CFS with respect to the level of impairment and the presence of additional symptoms, differences in the proportion of females and BMI remained significant. After correction, QFS patients were also significantly older. In all analyses QFS patients were as fatigued and distressed as CFS patients, but reported less additional symptoms. QFS patients had stronger somatic attributions, and higher levels of physical activity. No differences were found with regard to inflammatory markers and in other fatigue-related cognitive-behavioural variables. The relationship between cognitive-behavioural variables and fatigue, previously established in CFS, could not be confirmed in QFS patients with the exception of the negative relationship between physical activity and fatigue. CONCLUSION Differences and similarities between QFS and CFS patients were found. Although the relationship between perpetuating factors and fatigue previously established in CFS could not be confirmed in QFS patients, the considerable overlap in fatigue-related cognitive-behavioural variables and the relationship found between physical activity and fatigue may suggest that behavioural interventions could reduce fatigue severity in QFS patients.

Acceptance of New Technology: A Usability Test of a Computerized Adaptive Test for Fatigue in Rheumatoid Arthritis.

Background Little is known about the acceptance and usability of computerized adaptive tests (CATs) among patients with rheumatoid arthritis (RA). The main difference between completing a CAT and a traditional questionnaire concerns item presentation. CATs only provide one item at a time on the screen, and skipping forward or backward to review and change already given answers is often not possible. Objective The objective of this study was to examine how patients with RA experience a Web-based CAT for fatigue. Methods In individual sessions, participants filled in the CAT while thinking aloud, and were subsequently interviewed about their experience with the new instrument. The technology acceptance model (TAM) was used to structure the results. Results The participants were 15 patients with RA. They perceived the CAT as clear, brief, and easy to use. They were positive about answering one question per screen, the changing response options, layout, progress bar, and item number. There were 40% (6/15) of the participants that also mentioned that they experienced the completion of the CAT as useful and pleasant, and liked the adaptive test mechanism. However, some participants noted that not all items were applicable to everybody, and that the wordings of questions within the severity dimension were often similar. Conclusions Participants perceived the “CAT Fatigue RA” as easy to use, and also its usefulness was expressed. A 2.0 version has been improved according to the participants’ comments, and is currently being used in a validation study before it will be implemented in daily clinical practice. Our results give a first indication that CAT methodology may outperform traditional questionnaires not merely on measurement precision, but also on usability and acceptance valuation.

A web-based cognitive behaviour therapy for chronic fatigue in type 1 diabetes (Dia-Fit): study protocol for a randomised controlled trial

BackgroundFatigue is frequently reported by patients with type 1 diabetes mellitus. A recent study showed that 40 % of patients experienced severe fatigue that lasted for more than six months and was accompanied by substantial impairments in daily functioning. Currently, there is no effective treatment available for chronic fatigue in patients with type 1 diabetes. Cognitive behaviour therapy aimed at cognitions and behaviours that perpetuate fatigue is effective in reducing fatigue in other chronic diseases. Recent research showed that these cognitions and behaviours are also potential determinants of fatigue in type 1 diabetes. We designed Dia-Fit, a web-based cognitive behaviour therapy for severe and chronic fatigue in patients with type 1 diabetes. This patient-tailored intervention is aimed at reducing fatigue by changing cognitions and behaviours assumed to maintain fatigue. The efficacy of Dia-Fit will be investigated in this study.Methods/designA randomised controlled trial will be conducted in 120 patients with type 1 diabetes who are chronically and severely fatigued. Patients will be randomised to a treatment or waiting list group. The treatment group will receive Dia-Fit, a blended care therapy consisting of up to eight internet modules and face-to-face sessions with a therapist during a five-month period. The treatment will be tailored to the fatigue-maintaining cognitions and behaviours that are relevant for the patient and are determined at baseline. The waiting list group will receive Dia-Fit after a waiting period of five months. The primary outcome measure is fatigue severity. Secondary outcome measures are functional impairment and glucose control determined by haemoglobin A1c and blood glucose variability.DiscussionTo our knowledge, this is the first study investigating the efficacy of a cognitive behavioural intervention for chronic fatigue in patients with type 1 diabetes.Trial registrationDutch trial register NTR4312 (10 December 2013).

Working mechanism of a multidimensional computerized adaptive test for fatigue in rheumatoid arthritis

BackgroundThis paper demonstrates the mechanism of a multidimensional computerized adaptive test (CAT) to measure fatigue in patients with rheumatoid arthritis (RA). A CAT can be used to precisely measure patient-reported outcomes at an individual level as items are consequentially selected based on the patient’s previous answers. The item bank of the CAT Fatigue RA has been developed from the patients’ perspective and consists of 196 items pertaining to three fatigue dimensions: severity, impact and variability of fatigue.MethodsThe CAT Fatigue RA was completed by fifteen patients. To test the CAT’s working mechanism, we applied the flowchart-check-method. The adaptive item selection procedure for each patient was checked by the researchers. The estimated fatigue levels and the measurement precision per dimension were illustrated with the selected items, answers and flowcharts.ResultsThe CAT Fatigue RA selected all items in a logical sequence and those items were selected which provided the most information about the patient’s individual fatigue. Flowcharts further illustrated that the CAT reached a satisfactory measurement precision, with less than 20 items, on the dimensions severity and impact and to somewhat lesser extent also for the dimension variability. Patients’ fatigue scores varied across the three dimensions; sometimes severity scored highest, other times impact or variability. The CAT’s ability to display different fatigue experiences can improve communication in daily clinical practice, guide interventions, and facilitate research into possible predictors of fatigue.ConclusionsThe results indicate that the CAT Fatigue RA measures precise and comprehensive. Once it is examined in more detail in a consecutive, elaborate validation study, the CAT will be available for implementation in daily clinical practice and for research purposes.

Testing the efficacy of web-based cognitive behavioural therapy for adult patients with chronic fatigue syndrome (CBIT): study protocol for a randomized controlled trial

BackgroundCognitive behavioural therapy (CBT) is an effective treatment for fatigue and disabilities in patients with chronic fatigue syndrome (CFS). However, treatment capacity is limited. Providing web-based CBT and tailoring the amount of contact with the therapist to the individual needs of the patient may increase the efficiency of the intervention. Web-based CBT for adolescents with CFS has proven to be effective in reducing fatigue and increasing school attendance. In the proposed study the efficacy of a web-based CBT intervention for adult patients with CFS will be explored. Two different formats of web-based CBT will be tested. In the first format named protocol driven feedback, patients report on their progress and receive feedback from a therapist according to a preset schedule. In the second format named support on demand, feedback and support of the therapist is only given when patients ask for it. The primary objective of the study is to determine the efficacy of a web-based CBT intervention on fatigue severity.Method/DesignA randomized clinical trial will be conducted. Two-hundred-forty adults who have been diagnosed with CFS according to the US Centers for Disease Control and Prevention (CDC) consensus criteria will be recruited and randomized to one of three conditions: web-based CBT with protocol driven feedback, web-based CBT with support on demand, or wait list. Feedback will be delivered by therapists specialized in CBT for CFS. Each of the web-based CBT interventions will be compared to a wait list condition with respect to its effect on the primary outcome measure; fatigue severity. Secondary outcome measures are level of disability, physical functioning, psychological distress, and the proportion of patients with clinical significant improvement in fatigue severity. Outcomes will be assessed at baseline and six months post randomization. The web-based CBT formats will be compared with respect to the time therapists need to deliver the intervention.DiscussionAs far as we know this is the first randomized controlled trial (RCT) that evaluates the efficacy of a web-based CBT intervention for adult patients with CFS.Trial registrationNTR4013

Quality of Life: Measuring fatigue in rheumatoid arthritis

Irksome to debilitating, fatigue is a frequent symptom of rheumatoid arthritis (RA). Patients regard it as an important, neglected facet of the disease. An analysis of the effect of biologic therapies on fatigue has yielded disappointing results—do current treatments lack efficacy, or are we failing to measure adequate parameters?