Digital Outcome Measurement to Improve Care for Patients With Immune-Mediated Inflammatory Diseases: Protocol for the IMID Registry.

Background: Despite enormous clinical improvements, due to better management strategies and the availability of biologicals, immune-mediated inflammatory diseases (IMIDs) still have a significant impact on patients' lives. To further reduce disease burden, provider- as well as patient-reported outcomes (PROs) should be taken into account during treatment and follow-up. Web-based collection of these outcomes generates valuable repeated measurements, which could be used (1) in daily clinical practice for patient-centered care, including shared decision-making; (2) for research purposes; and (3) as an essential step toward the implementation of value-based health care (VBHC).

Impact of the First SARS-CoV-2 Lockdown on Adherence to Biological Treatment in Patients with Immune-Mediated Inflammatory Diseases in the Netherlands.

Purpose: During the SARS-CoV-2 pandemic, national and international societies have recommended continuing biological agents in patients with immune-mediated inflammatory diseases (IMID) in the absence of SARS-CoV-2 symptoms. However, adherence to biological treatment might decrease, because these recommendations contradict patients' beliefs. Especially an increased concern about side effects could have influenced the adherence to biological treatment during the first lockdown.

A Practical Guide for Assessment of Skin Burden in Patients With Psoriatic Arthritis.

Objective: Rheumatologists play a pivotal role in the management of patients with psoriatic arthritis (PsA). Due to time constraints during clinic visits, the skin may not receive the attention needed for optimal patient outcome. Therefore, the aim of this study was to select a set of core questions that can help rheumatologists in daily rheumatology clinical practice to identify patients with PsA with a high skin burden.

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

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.

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

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.

Preferences of patients with rheumatoid arthritis regarding disease-modifying antirheumatic drugs: a discrete choice experiment.

Background: Although patients have different treatment preferences, these individual preferences could often be grouped in subgroups with shared preferences. Knowledge of these subgroups as well as factors associated with subgroup membership supports health care professionals in the understanding of what matters to patients in clinical decision-making.

Objectives: To identify subgroups of patients with rheumatoid arthritis (RA) based on their shared preferences toward disease-modifying antirheumatic drugs (DMARDs), and to identify factors associated with subgroup membership.

The Development and Evaluation of Personalized Training in Shared Decision-making Skills for Rheumatologists.

Objective: Many factors influence a patient's preference in engaging in shared decision making (SDM). Several training programs have been developed for teaching SDM to physicians, but none of them focused on the patients' preferences. We developed an SDM training program for rheumatologists with a specific focus on patients' preferences and assessed its effects.

Does non-adherence to DMARDs influence hospital-related healthcare costs for early arthritis in the first year of treatment?

Introduction: Non-adherence to disease-modifying antirheumatic drugs (DMARDs) is suspected to relate to health care costs. In this study we investigated this relation in the first year of treatment.

Methods: In a multi-center cohort study with a one year follow up, non-adherence was continuously measured using electronic monitored medication jars.

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

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.

Nonadherence to disease modifying antirheumatic drugs in the first year after diagnosis: comparing three adherence measures in early arthritis patients.

Objectives: The aim of this study was to compare three measurement methods for non-adherence to DMARDs in early arthritis patients: the Compliance Questionnaire Rheumatology (CQR), the intracellular uptake of MTX in the form of MTX-polyglutamates (MTX-PGs) and electronic measurement with Medication Event Monitoring Systems (MEMS).

Methods: DMARD naïve early arthritis patients were included in an ongoing cohort study. MEMS were used to measure adherence continuously, while every 3 months MTX-PGs were collected together with the CQR.

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

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-joint count disease activity score (DAS28) in the first year after diagnosis.

Methods: Adult patients from an ongoing cohort study on treatment adherence were selected if they fulfilled the EULAR/ACR2010 criteria for RA, and were to start with their first DMARDs.

Facilitators and barriers to adherence in the initiation phase of Disease-modifying Antirheumatic Drug (DMARD) use in patients with arthritis who recently started their first DMARD treatment.

Objective: To explore themes associated with adherence in the initiation phase for first-time use of disease-modifying antirheumatic drugs (DMARD) in patients with inflammatory arthritis using focus groups and individual interviews.

Methods: Thirty-three patients were interviewed in focus groups and individual interviews. Interviews were transcribed verbatim and imported into ATLAS.

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

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.

Factors associated with adherence to pharmaceutical treatment for rheumatoid arthritis patients: a systematic review.

Objectives: To identify factors associated with adherence to medication for rheumatoid arthritis or undifferentiated inflammatory arthritis using a systematic literature search.

Methods: PubMed, PsycINFO, EMbase and CINAHL databases were systematically searched from inception to February 2011. Articles were included if they addressed medication adherence, used a reproducible definition, determinants and its statistical relationship.