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Self-management Europe Alert #2

Welcome to the second issue of the Alert of Self-Management Europe. These Alerts aim to contribute to greater awareness and accessibility of self-management support in patients, especially in those living with a chronic condition. The Alerts address healthcare professionals, managers and other stakeholders looking for practical recommendations how to implement practices that enhance self-management and patient empowerment.

Read the full alert here.

This is a publication by Self-management Europe. The European Research and Innovation Centre on patient empowerment and self-management, called “Self-management Europe”, is a not-for-profit partnership of organisations working on patient empowerment and self-management with a special focus on chronic diseases. Find out more  here.

GIN Conference 2021

We are happy to inform you that we will present two Poster Presentations at the GIN Conference 2021.

The 16th GIN conference will take place virtually from 25 to 27 October.

The theme for 2021 will be: Future Forward: Relevant, implementable and sustainable guidelines.

Our contributions:

  1. Development and user-testing of patient decision aids for self-management interventions for four chronic conditions: COMPAR-EU project.
    Presenting Author: Claudia Valli
  2. Selection process of the most promising self-management interventions for four chronic conditions: a GRADE based approach using network meta-analysis.
    Presenting Author: Jessica Beltran

Registration for GIN 2021 is now open!

For more information, click here.

Call for Panel Members on Self-Management Interventions for Heart Failure

Help us to improve health care of patients with Heart Failure!

Are you a patient with Heart failure (HF) or a health care provider?

Join a panel that will formulate clinical recommendations about the most promising self-management interventions (SMI) in patients with HF.

Your work will ensure that SMIs are effective, safe and equally accessible for patients with HF in Europe and around the globe.

For more information, please click here.

If you are interested in participating, please register here by 3 September 2021.

 

Self-management Europe Alert #1

Welcome to the first issue of the Alert of Self-management Europe. These Alerts aim to contribute to greater awareness and accessibility of self-management support in patients, especially in those living with a chronic condition. The Alerts address healthcare professionals, managers and other stakeholders looking for practical recommendations to implement practices that enhance self-management and patient empowerment.

Read the full alert here.

This is a publication by Self-management Europe. The European Research and Innovation Centre on patient empowerment and self-management, called “Self-management Europe”, is a not-for-profit partnership of organisations working on patient empowerment and self-management with a special focus on chronic diseases. Find out more  here.

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.

We therefore need to think carefully about how much extra self-management people can endure; some might be able to integrate extra self-management efforts in their daily live, others may not (Sieben et al, 2020).

Therefore, the burden of a disease for an individual should be kept in mind when offering additional self-management interventions.

sandra

Sandra van Dulmen

Research coordinator at Nivel (Netherlands institute for health services research); Professor of Communication in healthcare at Radboud university medical center.

References

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: lyudmil.ninov@eu-patient.eu

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.