COMPAR-EU Newsletter #6
Dear readers and friends,
another six month have passed and we are delighted, that the Corona situation in many European countries is easing. Hopefully, project meetings and conferences in the field of self-management can be held again in person very soon. Despite the challenges that the Corona pandemic brought for all of us, both personally and professionally, we have been able to advance our workplan and are looking forward to sharing the progress of our work with you.
In this newsletter you can read updates on our work, how we have involved patients in taking important decisions about our work, how we have analysed the available evidence on the effectiveness and cost-effectiveness of self-management interventions, which contextual factors affect self-management interventions and how are planning to synthesize all our research evidence and output. The development of a comprehensive platform is a key part of these plans and we are excited to report on the progress on this task.
Please enjoy reading our newsletter and learn more about the COMPAR-EU project progress. We wish you an enjoyable summer!
Your COMPAR-EU team
Read the full newsletter here.
Online self-management enhancing interventions; lessons learned to bear in mind
The COVID-19 pandemic has accelerated various processes in healthcare which previously proceeded slowly. At the one hand, the cancellation or postponement of medical visits and medical treatments forced many patients with various types of diseases to take care of their conditions themselves. Together with a heightened consciousness of the importance of staying healthy, this forced self-care boosted people’s self-management skills.
At the other hand, physical medical appointments were replaced by digital ones, forcing patients to get acquainted with web-based applications that facilitate video consultations and other online services. These services ranged from ordering repeat medication through the Internet to sending pictures of skin rash through a secured app. This paradigm shift took place in an incredibly fast speed and seemingly happened overnight.
Seemingly indeed, because already before we were confronted with the current pandemic, numerous online self-management enhancing interventions were developed and evaluated and, sometimes, implemented successfully. We learned a lot about how to develop such interventions together with the end-users in iterative processes. Still, the actual usage (uptake) and implementation of our thoroughly designed interventions, remained disappointingly low. I will illustrate this with a few examples of self-management enhancing PhD-projects in which I participated as supervisor. For patients with Rheumatoid Arthritis, we developed the program Vascular View (Puijk et al, 2017). Vascular View is a comprehensive, multi-component, tailored, web-based self-management support program for patients with cardiovascular disease (CVD).
Vascular View includes 6 modules, all identified through a thorough needs assessment among patients:
(1) Coping with CVD and its consequences;
(2) Setting boundaries in daily life;
(3) Lifestyle (general and tobacco and harmful alcohol use);
(4) Healthy nutrition;
(5) Being physically active in a healthy way; and
(6) Interaction with health professionals.
These modules were based on behavioral change techniques which were incorporated in the courses through general written information, quotes from and videos of patients with CVD, personalized feedback, diaries, and exercises. Unfortunately, our carefully conducted explorative RCT showed that, overall, the uptake of the program was low; 38% of the patients did not use the program or used it only once (Engelen et al, 2020). Similar results were found in another study in which we developed and tested an online tailored self-management enhancing program for patients with Rheumatoid Arthritis (RA) (Zuidema et al, 2015).
Program usage was low although we used several implementation strategies to increase the uptake:
(1) patients received a written instruction manual for the program,
(2) reminders to (re)visit the program were sent twice weekly via email, and (3) nurses brought the program to the attention of the intervention group participants during their consultation.
In our study we even noticed that patients in the intervention group dropped out more than patients in the control group.
We learned a lot (Zuidema et al, 2019) from these and our other studies (e.g., Sieben et al, 2019, 2020; du Pon et al, 2019). But the most important lesson to me is that chronic diseases like CVD, RA and especially diabetes type 1, already place a high burden on self-management; having to watch what you eat, to check your health outcomes throughout the day and take measures to remain within a safe range, requires a person to be aware of one’s bodily signs and symptoms 24/7, a full-time job for many people. When, on top of that, they are asked to also use an online self-management enhancing program with all kinds of tasks to accomplish, this may be too much. It does not leave any room to live beyond your disease.
Therefore, the burden of a disease for an individual should be kept in mind when offering additional self-management interventions.
Sandra van Dulmen
Research coordinator at Nivel (Netherlands institute for health services research); Professor of Communication in healthcare at Radboud university medical center.
Engelen MM, Dulmen S van, Puijk-Hekman S, Vermeulen H, Bredie BJH, Nijhuis-van der Sanden MWG, Gaal BGI. Evaluating the web-based support program vascular view: Results from an explorative randomized controlled trial. JMIR 2020 Jul 24;22(7):e17422
Pon E du, Kleefstra N, Cleveringa F, Dooren A van, Heerdink ER, Dulmen S van. Effects of the Proactive Interdisciplinary Self-Management (PRISMA) program on self-reported and clinical outcomes in type 2 diabetes: A randomized controlled trial. BMC Endocrine Disorders 2019 Dec 11;19(1):139
Puijk-Hekman S, van Gaal BG, Bredie SJ, Nijhuis-van der Sanden MW, van Dulmen S. Self-management support program for patients with cardiovascular diseases: User-centered development of the tailored, web-based program Vascular View. JMIR research protocols 2017 Feb 08;6(2):e18
Sieben A, Onzenoort HAW van, Dulmen AM van, Laarhoven K van, Bredie SJH. A nurse-based intervention for improving medication adherence in cardiovascular patients: an evaluation of a randomized controlled trial. An integrated process and outcome evaluation of the MIRROR trial. Pat Pref Adh 2019:13 837–852
Sieben A, Onzenoort HAW van, Bredie SJH, Laarhoven CJHM van, Dulmen S van. Identification of cardiovascular patient groups at risk for poor medication adherence, a cluster analysis. The Journal of Cardiovascular Nursing 2020 (in press)
Zuidema RM, Gaal BGI van, Dulmen S van, Repping-Wuts H, Schoonhoven L. Development of an online tailored self-management program for patients with Rheumatoid Arthritis. JMIR ResProtoc 2015 Dec 25;4(4):e140
Zuidema R, Dulmen S van, Nijhuis- van der Sanden M, Meek I, Ende E van den, Fransen J, Gaal B van. Efficacy of an online self-management enhancing programme for patients with rheumatoid arthritis: an explorative RCT. J Med Internet Res 2019 Apr 30;21(4):e12463
Zuidema R, Dulmen S van, Gaal B van, Nijhuis-van der Sanden M, Fransen J. Lessons learned from patients with access to an online self-management enhancing program for RA patients: qualitative analysis of interviews alongside a randomized clinical trial. Patient Educ Couns 2019; 102: 1170-1177
Call for Panel Members on Self-Management Interventions for Chronic Obstructive Pulmonary Disease
Help us to improve health care of patients with COPD!
Are you a patient with chronic obstructive pulmonary disease (COPD) or a health care provider? Do you want to help bridging the gap between current knowledge and practice of self-management interventions for patients with COPD?
Join a panel that will formulate clinical recommendations on the most promising self-management interventions (SMI) for patients with COPD. Your work will ensure that SMIs are effective, safe and equally accesible for patients with COPD in Europe and around the globe.
For more information please click here.
If you are interested in participating, please register here by 30 July 2021.
Call for Experts on Self-Management Interventions and Implementation
How to successfully implement self-management interventions in real life contexts?
Within COMPAR-EU we develop a core set of contextual factors to take into account when implementing promising self-management interventions in real life contexts and asks for your help in this development process.
We are looking for patients, health care professionals, researchers, policy makers and implementation experts in the area of diabetes, COPD, heart failure or obesity to take part in an online Delphi exercise.
For more information please click here.
If you are interested in participating, please register here by 24 May 2021.
Call for Patient Representatives for the COMPAR-EU project
EPF is planning to expand and diversify the group of patients and patient representatives involved in the COMPAR-EU patient panel.
Do you live with Type 2 Diabetes, Obesity, COPD or Heart Failure, or have experience in these diseases and are interested in joining an online group? We invite you to express your interest today!
The patient panel is an informal working group composed of EPF members, individual patients and also patient advocates from across Europe. The group is involved in project activities through various channels and meets (online) for monthly webinars. The patient panel supports in the production of materials in lay language and development of other project outputs. In 2021, it will focus on the functionality of the COMPAR-EU IT platform and materials on cost effectiveness.
All these activities will bring even more of a patient focus to COMPAR-EU, and showcase the direct benefits of patient involvement. The group is on voluntary basis, however, a compensation is foreseen.
Are you interested, or know someone that may be interested in joining the patient panel?
You can reach out to EPF Senior Programme Officer, Lyudmil Ninov: firstname.lastname@example.org
Call for Panel members
Do you want to be part of a panel that will formulate clinical recommendations about the most promising self-management interventions for patients with obesity?
Your participation will help ensuring that effective and safe self-management interventions are equally accessible for patients with obesity.
We are looking for healthcare professionals and patients/caregivers that will formulate recommendations about the use of self-management interventions for patients with obesity. For more information please click here.
If you are interested in participating in this panel, please register here by 19 March 2021.
Call for papers for a special issue
Dear researcher or expert in the field of self-management,
The International Journal of Environmental Research and Public Health (IJERPH; ISSN 1660-4601, IF 2.849; Q1 (38/162) in Public, Environmental and Occupational Health (SSCI)) is currently running a Special Issue entitled “Implementation of Self-Management Interventions in Chronic Disease Care: Challenges and Lessons Learned”, with Dr. Monique Heijmans and Dr. Carola Orrego serving as Guest Editors. If you are working in the field of self-management and chronic diseases and have recent scientific output, we believe that you could make an excellent contribution. Thus, we are delighted to invite you to contribute to this Special Issue devoted to gathering evidence on experiences in chronic diseases; self-management; complex interventions; contextual factors; implementation research; etc.
For further details, please follow the link to the Special Issue website.
The submission deadline is 31 October 2021. You may send your manuscript any time now until the deadline as individual papers will be published on an ongoing basis. Submitted papers should not be published or under consideration for publication elsewhere. We also encourage authors to send a short abstract or a tentative title to the Editorial Office in advance (email@example.com).
IJERPH is fully open-access. Open access (unlimited and free access by readers) increases publicity and promotes more frequent citations, as indicated by several studies. Open access is supported by the authors and their institutes. An article processing charge (APC) of 2300 CHF (Swiss Francs) applies to papers accepted after peer review.
For further details on the submission process, please refer to the instructions for authors at the journal website.
We look forward to hearing from you.
Dr. Monique Heijmans,
Dr. Carola Orrego
Formation of a panel to formulate recommendations for SMI for Type 2 Diabetes Mellitus
Sixteen participants from nine European countries conform this panel. There is a broad representation of stakeholders including health services researchers, endocrinologists, health economists, family practitioners, self-management experts, nurses, nutritionists, patient advocates and guideline methodologists. They are active since last week of October.
The panellists will:
- Rate the importance of included outcomes
- Propose the magnitude of effects thresholds.
- Discuss and agree on draft evidence summaries prepared by the COMPAR-EU Consortium about the effects of interventions, the economic considerations, values and preferences of patients, and contextual factors of self-management interventions.
- Discuss and agree on draft judgments for the different criteria relevant for the formulation of recommendations, included in the evidence to decision (EtD) framework.
- Discuss, formulate and agree on draft recommendations, conclusions and other related contents (e.g. summary of findings tables, narrative summaries, etc.).
Launch of Self-Management Europe
Research partners set up a new European Research and Innovation Centre on Patient Empowerment and Self-Management: Self-Management Europe.
It is an exploitation initiative of the COMPAR-EU project with the aim of developing the potential of people, professionals, organisations, systems, and communities for creating a society that strengthens empowerment and self-management in people with chronic diseases. Through capacity building, the centre provides knowledge, skills, motivation, and competency to people to act as leaders of self-management and empowerment enhancement in everyday life to improve health and quality of life for all.
Whilst there are various ongoing initiatives in Europe to support self-help and self-management with whom the research centre will work in partnership. However, it addresses the critical gap of accelerating the translation of critical research findings in practical applications to benefit patients, organisational and clinical processes and health innovations.
The newly formed initiative recently published a press release which you can read here.
Winner of our COMPAR-EU platform call
We are happy to announce that Sonicon, a company focused on providing reliable software solutions, will support the development of our European self-management platform hosting different decision aids and further key results resulting from our project.
We are ready to start our joint collaboration on this healthcare innovation!