Cornelia Van den Ende

• PhD
• Senior Researcher at Sint Maartenskliniek

Introduction This study aimed to rank definitions for measuring poor response one year after TKA, after assessing the face validity and feasibility of existing or newly proposed definitions. Materials and methods An international, three-round, online modified Delphi study was conducted with sixty-nine panelists from twenty-three countries. Definit...

Background Exercise therapy is a proven effective and safe treatment for people with axial spondyloarthritis (axSpA) to improve physical function and performance of daily activities. Nonetheless, previous studies have predominantly included patients with a relatively favorable health status. Individuals with sustained disease activity, severe ankyl...

Background Whereas there is limited evidence for the effectiveness of exercise therapy in people with Rheumatoid Arthritis (RA) [1], economic analyses on its cost-effectiveness are scarce. Recently, a randomized controlled trial (RCT) showed that a personalized, longstanding (>52 weeks) exercise therapy was more effective than usual care with respe...

Background In systemic sclerosis interstitial lung disease (ILD) is the leading cause of mortality [1]. An important unmet clinical need is the to identify patients at risk to develop ILD early, in order to implement personalized monitoring strategies. Although no predictive algorithm is yet available in clinical care, nailfold capillaroscopy is em...

Background Timely detection of progression of interstitial lung disease (ILD) in systemic sclerosis(SSc) is warranted to start or intensify treatment to halt disease progression[1]. Home spirometry, enabling frequent monitoring, can potentially identify progressive disease earlier[2]. Objectives To assess the validity of home monitoring to detect...

Background Systemic sclerosis (SSc) is a chronic multiorgan disease that can impact quality of life tremendously. Hand function impairment can potentially limit daily activities in different ways [1]. A Dutch cross-sectional study in 650 SSc patients showed that 28% of the respondents mentioned reduced hand function as an unmet need in SSc care [2]...

Objective To evaluate the effectiveness of long-term, personalized, supervised exercise therapy on functional ability compared with usual care in people with axial spondyloarthritis (axSpA) and severe functional limitations. Methods Participants were randomly 1:1 assigned to the intervention(maximal 64 sessions, with 14 additional optional session...

Objective We hypothesized that glucocorticoids would induce remission in very early Systemic Sclerosis patients by inhibition of inflammation driving the disease. We examined the efficacy and safety of methylprednisolone in very early Systemic Sclerosis. Methods In this trial adults with puffy fingers for less than three years, specific auto-antib...

Objective To evaluate the experiences, perceived benefits and disadvantages of home monitoring of pulmonary function in SSc patients with interstitial lung disease (ILD). Methods Semistructured interviews were conducted among SSc-ILD patients who used the home monitoring application of pulmonary function for at least 3 months. In our program, pati...

Background: For a subgroup of people with rheumatoid arthritis (RA) and severe disability, insight into their limitations is crucial for adequate treatment. Aim: To describe the extent and nature of functional limitations in people with RA and severe disability and to explore the associations of the extent of the functional limitations with patient...

Objectives To compare the effectiveness of longstanding (>52 weeks), supervised exercise therapy with usual care in adults with rheumatoid arthritis (RA) and severe functional limitations. Methods Participants were randomised 1:1 to the intervention (individualised goal-setting, active exercises, education and self-management regarding physical ac...

Objectives A successful outcome according to the knee specialist is not a guarantee for treatment success as perceived by patients. In this study, we aimed to explore outcome expectations and experiences of patients with OA before and after total knee arthroplasty (TKA) surgery and knee specialists that might contribute to the negative appraisal of...

To describe the quality of reporting and the nature of reported harms in clinical studies on the effectiveness of supervised exercises in patients with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA). We performed a systematic review, searching eight databases up to February 2023. Randomized controlled trials (RCTs) evaluating supervis...

Background: Total knee arthroplasty (TKA) can have a number of adverse consequences for patients that might contribute to a poor outcome. This study aimed to prioritize these consequences, from the perspective of patients and knee specialists. Methods: There were 95 TKA patients and 63 knee specialists who prioritized a set of 29 adverse consequ...

Background: knee complaints are one of the most common reasons to consult the general practitioners in the Netherlands and contribute to the increasing burden on general practitioners. A proportion of patients that are referred to orthopedic outpatient clinics are potentially referred unnecessarily. We believe osteoarthritis is not always consider...

Objective: To develop evidence-based recommendations for the non-pharmacological management of systemic lupus erythematosus (SLE) and systemic sclerosis (SSc). Methods: A task force comprising 7 rheumatologists, 15 other healthcare professionals and 3 patients was established. Following a systematic literature review performed to inform the reco...

Objective The variable course of fatigue adds to the disease burden of patients with OA yet it has been poorly understood. This study aimed to describe within-person fluctuations of fatigue severity and explore its associations with pain, positive affect, negative affect, sleep, and perceived exertion of physical activity. Methods Individuals with...

Background Exercise therapy has proven effective for people with rheumatic and musculoskeletal diseases (RMDs), including those with inflammatory arthritis such as rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA) [1-2]. Exercise therapy is generally considered safe for people with RMDs, although the evidence is scarce. A few reviews rep...

Background Long-term gout management is based on reducing serum urate by using urate-lowering therapy (ULT) [1, 2]. A lifelong treat-to-target approach is advocated, though a ULT (taper to) stop attempt can be considered (treat-to-avoid symptoms approach) during remission[1]. It is yet unclear if either is a superior strategy when remission has bee...

Background Despite the availability of effective medical treatment, there is still a subgroup of people with Rheumatoid Arthritis (RA) who have considerable functional limitations due to persistently high disease activity, joint destruction or deformities and/or comorbidities. More insight into the nature and severity of these functional limitation...

Background Systemic sclerosis (SSc) is a rare auto-immune disease with a huge impact on physical health as well as social well-being, with fatigue being the major problem experienced by patients with respect to their well-being [1]. While fatigue is being reported to be fluctuating and unpredictable, the dynamic nature of fatigue is not well unders...

Background Osteoarthritis is a major contributor to pain and disability worldwide [1]. Considering that inflammation plays an important role in the development of osteoarthritis, anti-inflammatory drugs may slow the progression of the disease [2]. Objectives To examine whether years-long use of colchicine 0.5 mg daily reduces incident total knee r...

Background Systemic sclerosis (SSc) is an auto-immune disease characterized by a triad of inflammation, vascular damage and fibrosis. Interstitial lung disease(ILD) is a major contributor to impaired quality of life and a leading cause of death in these patients. While recent studies reported a favorable effect on disease course when starting immun...

Background There is a lack of knowledge about the nature and frequency of the main limitations in activities and participation experienced by a subgroup of people with rheumatoid arthritis (RA) and severe limitations in physical functioning. More insight is essential to optimize treatment for this subgroup and can be obtained by linking the treatme...

Background Inflammation is thought to play an important role in hand osteoarthritis (HOA), which is further associated with pain and increased limitation of hand function [1,2]. Therapeutic options in HOA are scarce [3]. Objectives The aim of this study was twofold: to explore the acceptability of treatment with intramuscular (IM) methylprednisolo...

Background Patient-reported outcome measures (PROMs) are of vital importance to evaluate the outcomes of inflammatory arthritis and its management, but limitations of conventional PROMs include a lack of precision and/or comparability across conditions. Patient Reported Outcomes Measurement Information System (PROMIS) measures [1-2] were developed...

Background Accumulating evidence indicates that inflammatory mechanisms drive vasculopathy and fibrosis in Systemic Sclerosis (SSc), mainly in very early disease [1]. Therefore, anti-inflammatory therapies, such as glucocorticoids, might be effective in this early pathophysiological phase. According to the VEDOSS criteria, patients can be classifie...

Background Systemic sclerosis (SSc) is a heterogeneous auto-immune disease with interstitial lung disease (ILD) being the leading cause of mortality [1]. Current practice is to treat patients with severe or progressive ILD with immunosuppression[2]. Therefore tight monitoring of the pulmonary function is of huge importance, which can be improved by...

Objective To describe beliefs about urate lowering therapy (ULT) of physicians and patients in primary and secondary care, to examine differences in physicians’ medication beliefs, and to examine the association of physicians’ medication beliefs with prescribed dosage of ULT, gout outcomes, and patients’ medication beliefs. Methods Cross-sectional...

Physical activity (PA) is a key strategy for improving symptoms in people with rheumatic and musculoskeletal diseases (RMDs). The aim of this study was to investigate and rank the importance of known barriers and facilitators for engaging in PA, from the perspective of people living with RMD. Five hundred thirty-three people with RMD responded to a...

Background Empirical evidence for effective patient-researcher collaboration in basic research is lacking. This study aims to explore good working models and impact of patient involvement in basic rheumatology research and to identify barriers and facilitators. Method A responsive evaluation of a three years’ participatory research project in a ba...

Objective To assess the use, satisfaction, needs, and preferences regarding physical therapy (PT) in patients with systemic sclerosis (SSc). Methods A total of 405 SSc patients, treated in the Leiden University Medical Center multidisciplinary care program and fulfilling American College of Rheumatology (ACR)/European Alliance of Associations for...

Purpose The Scleroderma Patient-centered Intervention Network (SPIN) online hand exercise program (SPIN-HAND), is an online self-help program of hand exercises designed to improve hand function for people with scleroderma. The objective of this feasibility trial was to evaluate aspects of feasibility for conducting a full-scale randomized controlle...

Background Cross sectional research shows that nearly half of the individuals with osteoarthritis (OA) experience fatigue and over one third experience severe fatigue (1). However, few studies have addressed the unpredictable and fluctuating course of fatigue in OA including the occurrence of overwhelming fatigue as evidenced from qualitative resea...

Background Physical functioning in patients with inflammatory arthritis (IA) can be severely affected and is often measured using the disease-specific questionnaires Health Assessment Questionnaire-Disability Index (HAQ-DI) or Bath Ankylosing Spondylitis Functional Index (BASFI). Also, the Patient Reported Outcome Measurement Information System (PR...

Objective Gout and diabetes mellitus type 2 (DM) frequently co-exist. The pharmacological effects of metformin may include anti-inflammatory and urate lowering effects. The objective of this study was to test these effects in patients with gout starting uric acid lowering treatment (ULT) in secondary care. Methods Retrospective cohort study includ...

Background The phenomenon of heightened pain sensitivity is implicated in the pain experiences of people with OA[1]. Limited research show that pain sensitivity is associated with poor health and treatment outcomes. However, epidemiological research investigating the extent and determinants of pain sensitivity in OA is scarce. In addition, the qual...

Background In national and international management guidelines physical therapy (PT) is a recommended treatment for people with inflammatory arthritis (IA). Based on multiple systematic reviews, concluding that supervised exercise therapy and exercise promotion is an effective and safe PT treatment option in patients with IA, recommendations in par...

Background It is important that patients receive appropriate and reliable information that effectively targets beliefs in order for them to adhere to health behaviors. Framing (focusing on either gains or losses; [1]) is one of the most commonly used techniques in health communication to influence beliefs. In addition, the use of a testimonial in e...

Background There is a well-known variability in the quality of rehabilitation provided to patients with rheumatic and musculoskeletal diseases (RMDs). Elements to be improved are a higher standardization of the core content, optimal patient participation in goal setting and continuation of the process in tailored follow-up. More knowledge is needed...

Background Quality indicators (QIs) are used to monitor quality of care and adherence to osteoarthritis (OA) standards of care. Patient reported QIs can identify the most important gaps in quality of care and the most vulnerable patient groups. The aim of this study was to capture the perspective of people with knee OA (KOA) in the Netherlands on t...

Objective To evaluate the cost‐utility and cost‐effectiveness of the dr. Bart app compared to usual care in people with osteoarthritis (OA) of the knees and hips, applying a health care payer perspective. Methods This economic evaluation was conducted alongside a 6‐month randomized controlled trial that included 427 participants. The dr. Bart app...

Objectives: The aim was to explore pain characteristics in individuals with knee OA (KOA), to compare pain sensitivity across individuals with KOA, individuals with chronic back pain (CBP) and pain-free individuals (NP) and to examine the relationship between clinical characteristics and pain sensitivity and between pain characteristics and pain s...

Objective To perform a COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) based Systematic Literature Review of measurement properties of the Polymyalgia Rheumatica Activity Score (PMR-AS). Methods Pubmed, EMBASE, and CINAHL were broadly searched. English full text articles, with (quantitative) data on at least...

Aims Little is known about usual care by physicians and pharmacy teams to support adherence to statins and whether the extent of this care is associated with adherence to statins. Objective of the study was to examine the relationship between the extent of adherence supporting activities of healthcare practitioners (HCPs) and patients’ adherence to...

Background: Empirical evidence for effective patient-researcher collaboration in basic research is lacking. This study aims to explore good working models and impact of patient involvement in basic rheumatology research and to identify barriers and facilitators. Method: A responsive evaluation of a three years’ participatory research project in an...

There is convincing evidence to suggest that exercise interventions can significantly improve disease-related outcomes as well as comorbidities in rheumatic and musculoskeletal diseases (RMDs). All exercise interventions should be appropriately defined by their dose, which comprises of two components: a) the FITT (frequency, intensity, time and typ...

Background Systemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low...

Objectives To investigate the reliability and validity of 18F-FDG PET-CT scanning (FDG-PET) in rheumatoid arthritis (RA) patients with low disease activity tapering tumor necrosis factor inhibitors (TNFi) and its’ predictive value for successful tapering or discontinuation. Methods Patients in the tapering arm of the DRESS study, a randomized cont...

Objective: Non-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding...

Objective: To assess the perspectives of physical therapists treating patients with systemic sclerosis (SSc) on their current practice and educational needs. Method: In July 2019, 405 SSc patients attending a multidisciplinary SSc programme received a survey on physical therapy. Patients who indicated having received physical therapy in the past 2...

Objective Systemic sclerosis is a complex connective tissue disease affecting mental and physical health. Fatigue, hand function loss, and Raynaud's phenomenon are the most prevalent disease-specific symptoms of systemic sclerosis. This study aimed to develop consensus and evidence-based recommendations for non-pharmacological treatment of these sy...

Background: Quality indicators (QIs) are used to monitor quality of care and adherence to osteoarthritis (OA) standards of care. Patient reported QIs can identify the most important gaps in quality of care and the most vulnerable patient groups. The aim of this study was to capture the perspective of people with knee OA (KOA) in the Netherlands on...

The objective is to describe the spectrum of the health professional (HP) treatment approach for systemic sclerosis (SSc) from the perspective of Dutch HPs, including alignment of treatment goals set by HPs with self-reported referral reasons, coverage of patient-reported unmet care needs, and quality of communication between HPs and rheumatologist...

Background Although most of the patients after total knee replacement (TKA) report very satisfied outcome scores, there is still a significant proportion of patients that experience persistent knee pain, functional disability or dissatisfaction after TKA because of osteoarthritis (OA). It is difficult to quantify the proportion of patients with poo...

Background Axial SpondyloArthritis (axSpA) and Rheumatoid Arthritis (RA) are chronic rheumatic diseases with an often progressive course, defined by chronic inflammation. With respect to exercise therapy, in axSpA and RA, multiple systematic reviews concluded that supervised exercise therapy is an effective and safe treatment option, resulting in s...

Background Systemic sclerosis (SSc) is characterized by inflammation, vasculopathy and progressive fibrosis. Pulmonary Hypertension (PH) is one of the leading causes of death in SSc (1). Currently, most patients with SSc are screened for the presence of PH, and focus lies on early detection and early treatment. Recent literature describes potential...

Background Non-adherence to medication (range 30–107%) is a major issue in patients with rheumatoid arthritis (RA). Previous research has shown that electronic monitoring feedback (EMF) might be an effective strategy to improve medication adherence in chronic conditions. Therefore, this study investigated the effectiveness of electronic monitoring...

Background Self-management is of paramount importance in the non-surgical treatment of knee/hip osteoarthritis (OA). Modern technologies offer the possibility of 24/7 self-management support. We developed an e-self-management application (dr. Bart app) for people with knee/hip OA. The aim of this study was to document the use and usability of the d...

Objective It is generally unknown how the attitudes and beliefs of health care professionals (HCPs) might affect the attitudes, beliefs, and medication‐taking behavior of patients with rheumatoid arthritis (RA). This study aims 1) to examine the attitudes, health‐related associations (both implicit and explicit), and beliefs of HCPs about conventio...

Introduction Systemic sclerosis starts with an early phase characterized by Raynaud’s phenomenon, puffy fingers/hands, autoantibodies, and a scleroderma nailfold microscopic pattern. Alterations in the nailfold microscopic pattern are not evident in all early SSc patients. Photoacoustics (PA) and high-frequency ultrasound (HFUS) could fulfill this...

Introduction No studies have examined factors associated with fear in any group of people vulnerable during COVID-19 due to pre-existing medical conditions. Objective To investigate factors associated with fear of consequences of COVID-19 among people living with a pre-existing medical condition, the autoimmune disease systemic sclerosis (SSc; scl...

Introduction No studies have reported mental health symptom comparisons prior to and during COVID-19 in vulnerable medical populations. Objective To compare anxiety and depression symptoms among people with a pre-existing medical condition and factors associated with changes. Methods Pre-COVID-19 Scleroderma Patient-centered Intervention Network...

Objective When appraising the quality of randomised clinical trial (RCTs) on the merits of exercise therapy, we typically limit our assessment to the quality of the methods. However, heterogeneity across studies can also be caused by differences in the quality of the exercise interventions (ie, ‘the potential effectiveness of a specific interventio...

Introduction: Systemic sclerosis starts with an early phase characterized by Raynauds phenomenon, puffy fingers/hands, autoantibodies and a scleroderma nailfold­microscopic pattern. Alterations in the nailfoldmicroscopic pattern are not evident in all early SSc patients. Photoacoustics(PA) and high-frequency ultrasound (HFUS) could fulfill this nee...

Introduction Systemic sclerosis is a rare and complex disease. Optimal management of patients requires knowledge and experience and, importantly, intensive collaboration between hospitals and multidisciplinary teams. Definition and recognition of expert centres in systemic sclerosis is currently lacking, which complicates collaboration between cent...

Background/ objective: To gain insight in the use of current systemic sclerosis (SSc) care provided by health professionals from the patient perspective. We focused on referral reasons, treatment goals, the alignment with unmet care needs, and outcome satisfaction. Methods: Dutch SSc patients from 13 participating rheumatology departments were i...

Background: A significant proportion of patients experiences poor response (i.e. no or little improvement) after total knee arthroplasty (TKA) because of osteoarthritis. It is difficult to quantify the proportion of patients who experiences poor response to TKA, as different definitions of, and perspectives (clinician's and patient's) on poor resp...

Background In the Netherlands over 1.2 million people have OA of which almost half have knee OA. Recently, several international and national guidelines and quality standards have been developed and adopted to improve the quality of knee OA care. Mapping the patient perspective is a valuable and important step to get insight into the current status...

Background Self-management is of paramount importance in non-surgical treatment of knee and/or hip osteoarthritis(OA). Modern technologies offer the possibility to support self-management 24/7. We developed an e-self-management application (dr. Bart app) for people with knee and/or hip OA. A central element of the dr. Bart app is that the app propo...

Background Self-management is of paramount importance in non-surgical treatment of knee and/or hip osteoarthritis (OA). Modern technologies offer the possibility to support self-management 24/7. We developed an e-self-management application (dr. Bart app) for people with knee and/or hip OA¹. Objectives To evaluate the (incremental) cost-utility an...

Background Self-management is of paramount importance in non-surgical treatment of knee and/or hip osteoarthritis(OA). Modern technologies offer the possibility to support self-management 24/7. We developed an e-self-management application (dr. Bart app) for people with knee and/or hip OA. Objectives To document the use of the dr. Bart app and its...

Background: To evaluate the effect of a stand-alone mobile and web-based educational intervention (eHealth tool) compared to usual preparation of a first orthopedic consultation of patients with hip or knee osteoarthritis (OA) on patients' satisfaction. Methods: A two-armed randomized controlled trial involving 286 patients with (suspicion of) h...

Background Autologous haematopoietic stem cell transplantation (HSCT) improves survival in systemic sclerosis (SSc) with poor prognosis, but is hampered by treatment-related mortality (TRM). Objective To evaluate event-free survival (EFS), TRM, response to treatment, disease progression and patient characteristics associated with events. Methods...

Objective Contagious disease outbreaks and related restrictions can lead to negative psychological outcomes, particularly in vulnerable populations at risk due to pre-existing medical conditions. No randomised controlled trials (RCTs) have tested interventions to reduce mental health consequences of contagious disease outbreaks. The primary objecti...

Objective To describe the efficacy and safety in all patients with systemic sclerosis–associated pulmonary arterial hypertension who started selexipag between 09-2016 and 06-2018 in two pulmonary arterial hypertension expert centers. Methods All patients with systemic sclerosis–associated pulmonary arterial hypertension diagnosed by right heart ca...

Cardiovascular disease (CVD) morbidity and mortality is highly prevalent in patients with rheumatoid arthritis (RA) with debilitating effects for the individual as well as significant healthcare impact. Current evidence demonstrates that engaging in aerobic and resistance exercise (i.e. structured physical activity) can significantly improve patien...

To compare the amount of physical activity (PA) among patients with different subsets of knee or hip osteoarthritis (OA) and the general population. Secondary analyses of data of subjects ≥ 50 years from four studies: a study on the effectiveness of an educational program for OA patients in primary care (n = 110), a RCT on the effectiveness of a mu...

Objective To evaluate the short-term effects of use of the dr. Bart app, compared to usual care, on the number of secondary health care consultations and clinical outcomes in people with knee/hip OA in the Netherlands. Method A randomized controlled design involving participants ≥50 years with self-reported knee and/or hip OA recruited from the co...

Background: A significant proportion of patients shows poor response (i.e. no or little improvement) after total knee arthroplasty (TKA) because of osteoarthritis. It is difficult to quantify the proportion of patients with poor response to TKA, as different definitions of, and perspectives (clinician’s and patient’s) on poor response are being use...

Background: A significant proportion of patients experiences poor response (i.e. no or little improvement) after total knee arthroplasty (TKA) because of osteoarthritis. It is difficult to quantify the proportion of patients who experiences poor response to TKA, as different definitions of, and perspectives (clinician’s and patient’s) on poor respo...

Background Low-dose radiation therapy is commonly used as treatment for benign diseases, including osteoarthritis, in some countries (eg, Germany). We have previously presented our 3-month follow-up results of two randomised sham-controlled trials, in which no substantial effects of low-dose radiation therapy on clinical outcomes were seen in patie...

Objectives: SSc is a autoimmune disease characterized by fibrosis of the skin and internal organs. There is a lack of evidence for the efficacy of i.v. CYC pulse therapy on skin thickening. We aimed to examine the response of i.v. CYC pulse therapy on skin thickening in our cohort of SSc patients and analysed factors that predict this response. M...

Objectives: To gain insight into SSc patients' perspective on quality of care and to survey their preferred quality indicators. Methods: An online questionnaire about healthcare setting, perceived quality of care (CQ index) and quality indicators, was sent to 2093 patients from 13 Dutch hospitals. Results: Six hundred and fifty patients (mean...