27 research outputs found

    Focus group interviews reveal reasons for differences in the perception of disease activity in rheumatoid arthritis

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    Objective: Doctors frequently see patients who have difficulties coping with their disease and rate their disease activity high, despite the fact that according to the doctors, the disease activity is low. This study explored the patients’ perspectives on this discordance that may help to understand why for some patients, usual care seems to be insufficient. Methods: In our qualitative study we conducted focus group interviews where questions were used as a guideline. Transcripts were analyzed using inductive thematic analysis. Findings: Twenty-nine patients participated in four focus groups. Participants could not put their finger exactly on why doctors estimated that their disease activity was low, while they experienced high levels of disease activity. During the in-depth focus interviews, seven themes emerged that appeared related to high experienced disease activity: (1) perceived stress, (2) balancing activities and rest, (3) medication intake, (4) social stress, (5) relationship with professionals, (6) comorbidity, and (7) physical fitness. Conclusion: When patients were asked why their view of their disease activity was different from that of their physician, seven themes emerged. The way participants coped with these themes seemed to be the predominant concept. Specific interventions that focus on one or more of the reported themes and on coping may improve not only the quality of life of these patients but also the satisfaction with the patient–doctor relationship for both parties

    How to study determinants related to medication adherence in newly diagnosed polyarthritis patients for the development of a prediction instrument

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    Introduction: For patients with a chronic disease, the appropriate use of medication is the key to manage their illness

    Impact of the Coronavirus Disease Pandemic on Health-Related Quality of Life of Patients with Inflammatory Bowel Disease

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    BACKGROUND: To learn from the crisis caused by the coronavirus disease (COVID-19) pandemic and be prepared for future pandemics, it is important to investigate the impact of this period on the wellbeing of patients with inflammatory bowel disease (IBD). AIMS: To describe the health-related quality of life (HRQoL) and disease control of IBD patients during the first wave of the COVID-19 pandemic in The Netherlands. METHODS: Between March 17 and July 1, 2020, patients aged 18 years and older with IBD from the Erasmus MC (Rotterdam, The Netherlands) were invited to complete online questionnaires at week 0, 2, 6 and 12. The Inflammatory Bowel Disease Questionnaire (IBDQ), the Inflammatory Bowel Disease Control-8 (IBD-control-8) and the numeric rating scale on fatigue were used. The evolution of the different outcomes over time was measured using mixed models. RESULTS: Of 1151 invited patients, 851 patients (67% CD and 33% UC or IBD-U) participated in the study (response rate 74%). No relevant changes in total scores were found over time for the IBDQ (effect estimate 0.006, 95% CI [− 0.003 to 0.015]) and IBD-control-8 (effect estimate 0.004, 95% CI [0.998–1.011]). There was a slight, increasing trend in fatigue scores over time (effect estimate 0.011, 95% CI [0.004, 0.019]). CONCLUSIONS: This first lock down due to the COVID-19 pandemic in The Netherlands did not impact on the HRQoL and disease control of patients with IBD. Up to date information may have contributed to a stable HRQoL in IBD patients even in an extreme period with restrictions and insecurities. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s10620-021-07118-8

    how to study determinants related to medication adherence in newly diagnosed polyarthritis patients for the development of a prediction instrument

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    Patient Preference and Adherence Dovepress Introduction: For patients with a chronic disease, the appropriate use of medication is the key to manage their illness. Adherence to medication is therefore important. Adherence can be divided into three parts: the initiation part, the execution phase, and the discontinuation part. Little is known about the determinants of the initiation part. For this reason, we describe the conduct of a stepwise procedure to study determinants of medication initiation for patients with a chronic disease. Methods/design: The stepwise procedure comprises of eliciting a list of all potential determinants via literature review, interviewing patients, and consulting an expert panel. This is followed by embedding the determinants in a theoretical framework, developing a questionnaire, and choosing adherence measurement methods. The consecutive steps that we conducted for the development of a tool for the prediction of adherence in our study sample of early arthritis patients are described. Discussion: Although we used a thorough procedure, there are still some pitfalls to take into account, such as the choice of theoretical framework. A strength of this study is that we use multiple adherence measurement methods and that we also take clinical outcomes into account

    Non-adherence to disease-modifying antirheumatic drugs is associated with higher disease activity in early arthritis patients in the first year of the disease

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    Introduction: Non-adherence to disease-modifying antirheumatic drugs (DMARDs) hampers the targets of rheumatoid arthritis (RA) treatment, obtaining low disease activity and decreasing radiological progression. This study investigates if, and to what extent, non-adherence to treatment would lead to a higher 28-

    Behavioural, psychiatric and psychosocial factors associated with aggressive behaviour in adults with intellectual disabilities: A systematic review and narrative analysis

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    Background: Aggressive behaviour is prevalent in people with intellectual disabilities. To understand the aetiology, it is important to recognize factors associated with the behaviour. Method: A systematic review was conducted and included studies published between January 2002 and April 2017 on the association of behavioural, psychiatric and psychosocial factors with aggressive behaviour in adults with intellectual disabilities. Results: Thirty-eight studies were included that presented associations with 11 behavioural, psychiatric and psychosocial factors. Conflicting evidence was found on the association of these factors with aggressive behaviour. Conclusions: The aetiology of aggressive behaviour is specific for a certain person in a certain context and may be multifactorial. Additional research is required to identify contributing factors, to understand causal relationships and to increase knowledge on possible interaction effects of different factors
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