Elena Nikiphorou, MBBS/BSc, MD (Res): Self-Management Strategies for Patients With Arthritis

Rheumatology Networked interviewed Elena Nikiphorou, MBBS/BSc, MD (Res), to discuss her study 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis. The results suggest that self-management and resources for patients with inflammatory arthritis (IA) improve patient experience of care and outcomes by empowering and supporting patients in a more holistic, patient-centered approach.

Rheumatology Network: Why is self-management strategies for patients with IA so important?

Elena Nikiphorou, MBBS/BSc, MD (Res): Self-management strategies in IA are an important aspect of care that goes beyond drug therapy and which supports the person living with IA and people around them (family, careers, etc) in their medical journey. The ability to understand the disease and deal with the practical physical and psychological impacts that come along with the disease represents a crucial component of self-management and enhances patient confidence and empowerment. These strategies enable people to take a more active role in their health and become more engaged partners of the team and their individual care pathway.

RN: Why do you believe these strategies (such as understanding their disease and the impacts of it) have been largely neglected in this patient population?

EN: Probably because the focus has largely been on medical treatments (drug therapy) and there is unfortunately a general lack of understanding on the role and positive impact these self-management strategies could have on patients. We know though from anecdotal evidence that self-management programs and interventions can be particularly helpful to patients and tend to make their overall patient experience better.

Furthermore, lifestyle factors (eg, smoking, alcohol) and comorbidities unfortunately remain poorly addressed in routine clinical practice. This could be due to time pressures of routine clinics, lack of understanding on the relevance of addressing these factors, and conditions in providing more optimal and holistic patient care. In the case of comorbidities, this applies for both physical and psychological (mental health) comorbidities. The latter in particular (mental health comorbidities) cause considerable burden to the individual affected as well as their immediate family and society as a whole.

Finally, general lack of knowledge on what self-management interventions may be, stemming from lack of guidance and professional training to health care professionals (HCPs). Recognizing this, we proposed this task force to provide guidance on HCPs on how to support people with IA to self-manage.

RN: What was the methodological approach your team utilized?

EN: The standard methodological approach as per all EULAR task forces with the purpose of developing clinical recommendations. So, a multidisciplinary taskforce comprised of 18 experts from 11 European countries was convened. The bulk of the work centered on a systematic review and other supportive information including surveys to HCPs and patient organizations, which were used to formulate the recommendations. Through a stepwise process according to the EULAR standard operating procedures (SOPs), assigning levels of evidence and strength of recommendation, and voting on level of agreement to reach consensus it was achieved.

RN: Can you briefly discuss the overarching principles that your team discovered throughout your research?

EN:

• Self-management implies taking an active role in learning about one’s condition and in the shared decision-making process about one’s health and care pathway. In other words, self-management encourages patients to take a more proactive role in managing their disease and in acquiring key self-management skills and coping strategies and shared decision making. Management strategies and available resources to ensure their ability to provide optimal support to patients has been strongly emphasized through our work. 
• Self-efficacy (personal confidence to carry out an activity with the aim of achieving a desired outcome) has a positive benefit on various aspects of living with inflammatory arthritis.
• Patient organizations often provide valuable self-management resources and collaboration between healthcare professionals and patient organizations will therefore benefit patients. Our task force encourages HCPs to reach out to patient organizations and understand what resources may be available,to support patients in self-managing their disease.

RN: What are some of the recommendations that you would suggest to patients with IA to better self-manage their condition?

EN: I would highlight the importance of patient education. In other words, making sure patients learn and understand their disease so that they can take a more proactive role in managing their symptoms and disease overall. We identified patient education to be an important start-point that underpins all self-management interventions. Our recommendations talk about the responsibility that HCPs have on signposting patients and promoting self-management interventions, but they also place responsibility on the individual patient themselves.

RN: Were you surprised by the results of the study?

EN: What was surprising was the general lack of awareness into existing self-management resources and how patient organizations could help. This is what drove us to the specific recommendations and our desire to work on dissemination/implementation plan: to maximize uptake of these recommendations.

A key role of HCPs is to enable access to and to signpost to supported self-management resources. Many HCPs will need to make themselves aware of how to most effectively provide and signpost to these different resources. The taskforce highlighted the importance of honesty and building trust as important elements for establishing open communication between patients and HCPs – lack of honesty and trust can lead to poor patient-HCP communication, which is an important barrier to optimal care overall.

RN: Were there any strengths or limitations of the study that you’d like to highlight?

EN:

• Strengths: A robust process in place in developing the recommendations, according to the EULAR SOP. Recommendations met with strong consensus. Focus on implementation aspects, represents another strength and the fact that we are continuing with efforts to maximize dissemination and implementation of these recommendations.
• Limitations: Self-management represents a complex intervention. More evidence is needed on the effectiveness of specific interventions. In this regard, some of the recommendations are based primarily on expert opinion. The task force recognized that it is particularly challenging for patient organizations to demonstrate the value of what they do, but this does not remove the need for them to make efforts to demonstrate the impact of their resources. With this in mind, our research agenda was proposed.

RN: Does your team plan on doing any further research on this topic?

EN: There are a number of research-related activities on self-management interventions in the UK and other countries, with a focus on measuring the impact of specific self-management interventions offered for example by patient organizations. Research agenda items we have identified include the need to demonstrate the effectiveness of specific self-management interventions in IA and their impact on disease activity and to study specific patient-reported outcome domains potentially affected by self-management including pain, fatigue, sleep, emotional and physical wellbeing, disability, quality of life and self-efficacy, and explore a core outcome set. Furthermore, a need was identified to elucidate the cost-effectiveness of specific self-management interventions and programs delivered. As a task force we are currently focusing on dissemination and implementation plans to enhance the uptake of these recommendations.

One of the main quality-of-care objectives is to provide a “package” that will enable greater uptake of the advice given in the recommendations. In other words emphasis on implementation aspects. In this regard and in relation to the nine recommendations, the taskforce recognized the importance of:

• Raising awareness and educating HCPs on self-management strategies and available resources to ensure ability to provide optimal support to patients.
• Efforts to increase awareness and strengthen collaborations between patients, patient organizations, and HCPs.
• Sign-posting patients to good evidence-based information, also provided by many patient organizations.
• Patient education as a crucial component of self-management whilst acknowledging that being educated around various aspects of the disease does not necessarily imply implementation of meaningful changes.

RN: Is there anything else you’d like our audience to know?

EN: Adherence to these recommendations has the potential to improve patient care and outcomes in people with IA and that at least some patient organizations play an important role in supporting people with IA.

The vision of our taskforce is that patient-HCP communication, the setting of meaningful and achievable goals, and shared decision making are seen as core components of self-management. This aligns well with EULAR’s current quality of care strategy that by 2023, EULAR will deliver pre-eminent comprehensive quality of care frameworks for the management of people with rheumatic and musculoskeletal diseases.