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.

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