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Publications (20)
Background
Autoimmune Connective Tissue Disorders (CTDs), including Mixed Connective Tissue Disease (MCTD), systemic sclerosis (SSc) and systemic lupus erythematous (SLE) can lead to Raynaud phenomenon, involvement of internal organs, pain in joints, skin abnormalities and muscle weakness. Consequently, people with CTDs experience limitations in ac...
In this presentation, the learning experiences and reflections of a healthcare team on redeveloping the transitional care for young adults with RMD”s are shared. In the process of redeveloping care, the healthcare team experienced that small steps, driven by patient stories and involvement of patients in all phases from development to evaluation, l...
Transitional care is a purposeful, planned process addressing the medical, psychosocial and educational/vocational (holistic) needs of adolescents and young adults as they move from child-centred to adult-oriented healthcare systems. From the perspective of young peoples with juvenile onset rheumatic and musculoskeletal diseases (RMDs), the “health...
Background
A web-based self-management intervention guided by peer-trainers was developed to support young adults’ self-management in coping with Juvenile Idiopathic Arthritis (JIA). To investigate its effectiveness, a randomized controlled trial (RCT) was conducted. In addition, the content of the chat and participants’ goals were studied to ident...
Background
The Health Education Impact Questionnaire (heiQ) evaluates the effectiveness of health education and self-management programs provided to people dealing with a wide range of conditions. Aim of this study was to translate, culturally adapt and validate the Dutch translation of the heiQ and to compare the results with the English, German a...
Objective:
Aim of this study was to investigate preferences and needs regarding the structure and content of a person-centered online self-management support intervention for patients with a rheumatic disease.
Methods:
A four step procedure, consisting of online focus group interviews, consensus meetings with patient representatives, card sortin...
Background:
The chronic nature of rheumatic diseases imposes daily challenges upon those affected and causes patients to make daily decisions about the way they self-manage their illness. Although there is attention to self-management and evidence for the desirability of tailored interventions to support people with a rheumatic disease, interventi...
Background
Patient participation in research and in development of interventions has become a hot topic. Research on health beliefs of stakeholders shows that patients do have other views on health and well-being than health professionals without any experience of a chronic condition themselves (Ubel 2003, Huber 2014). Additionally, including the p...
To improve knowledge and to encourage active involvement of young adults with juvenile idiopathic arthritis (JIA), an informative website with written and video information and an online portal with access to the personal medical record, self-monitoring, and e-consult functionalities were developed. Before implementing these applications in daily p...
Self-management is an important part in the treatment of chronic conditions, such as rheumatism. Interventions to promote self-management behavior are not always used. One of the reasons is the lack of active involvement of the end user in the development process. Also a theoretical underpinning of the intervention itself is often missed.
At the De...
Based on the self-efficacy theory, an online and a face-to-face self-management programs 'Challenge your Arthritis' for young adults with a rheumatic disease have recently been developed. These two courses are led by young peer leaders. The objective of this study was to test the feasibility of the online and face-to-face self-management program.
F...
Background In order to minimise differences in rheumatology nursing care across countries and regions, recommendations for the role of the nurse have been developed (1). However, patients should be directional in defining the content of good quality care. Therefore, their expectations and needs were explored in focus groups. 4 main themes were cate...
People with a rheumatic disease must find ways to effectively manage their physical, emotional, employment an social impacts on their lives, as well as manage their medications and hospital appointment (1). Besides rheumatologists, other health professionals such as occupational therapists, physiotherapists and rheumatology nurses are involved to s...
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 ag...
Background: The contribution of nurses to rheumatology care is increasingly recognised. Therefore, international efforts have been made to emphasise and optimise the role of the nurse [1]. However, evidence for the value of nursing interventions to outcomes is still limited, and discussions within countries about funding, legal regulations and the...
