Hoe dient een integrale behandeling voor patiënten met atriumfibrilleren bereikt te worden?

Definitions and components of integrated management of atrial fibrillation patients

Integrated management of AF patients (see for risk factors module 7) requires a coordinated and agreed patient-individualized care pathway to deliver optimized treatment by an interdisciplinary team. Central to this approach is the patient; treatment options should be discussed, and the management plan agreed in discussion with healthcare professionals. Treatment is subject to change over time with the development of new risk factors, symptoms, disease progression, and the advent of new treatments.

Multidisciplinary atrial fibrillation teams

Integrated AF management requires a coordinated multidisciplinary team composed according to individual patient needs and local availability of services. Complex patients would benefit from a multidisciplinary team that includes relevant specialists, as well as their primary care physician (for post-discharge care) and their family/carer. Involvement of patient and family/carers is integral to the success of AF management.

Patient involvement and shared decision making

Patient values and preferences

Exploring patient’s values, goals, and preferences should be the first step of shared decision making (Charles, 1999; Lane, 2015). Qualitative research demonstrates recurring discordance between caregivers reporting shared decision making and patients experiencing a paternalistic model (McCabe, 2011; Bergtun, 2019; Borg Xuereb, 2016; Loewen, 2017; Seaburg, 2014), and a misperception that many prefer not to be involved in decision making, rather deferring to their physician (Borg Xuereb, 2016; Bajorek, 2007; Hess, 2012; Lane, 2018; Lindberg, 2017; Palacio, 2015). For shared decision making (Seaburg, 2014), the importance attached by the patient to stroke prevention and rhythm control and the respective risk of death, stroke, and major bleeding, as well as the burden of treatment, should be thoroughly assessed and respected (Lane, 2015; Lane, 2018; Palacio, 2015; Lane, 2014; MacLean, 2012).

Patient education

Patient knowledge about AF and its management is often limited (Lane, 2015; Desteghe, 2016; Frankel, 2015; Lane, 2006; McCabe, 2008) particularly when first diagnosed, when the majority of treatment decisions are discussed and made.

Information on useful resources to help educate AF patients (Ihara, 2018) can be found in the ESC Textbook of Cardiovascular Medicine, but education alone is often insufficient to produce and maintain medication adherence and lifestyle modifications.

Healthcare professional education

A mixed-methods approach has been used when targeting healthcare professionals including individual needs assessment followed by bespoke education and training, whether by smart technology, online resources, or upskilling face-to-face workshops or a combination (Lip, 2017). The mAFA, integrating clinical-decision support and education for healthcare professionals, has been successfully piloted and subsequently tested in an outcome RCT (Guo, 2019). Education alone is insufficient to change healthcare-professional behaviour (Franchi, 2019). In the Integrated Management Program Advancing Community Treatment of Atrial Fibrillation (IMPACT-AF) trial (Vinereanu, 2017), a multifaceted educational intervention including healthcare professional education and feedback resulted in a significant increase in the proportion of patients treated with oral anticoagulant (OAC) therapy.

Adherence to treatment

Factors affecting adherence to treatment can be grouped into patient related (e.g. demographics, comorbidities, cognitive impairment, polypharmacy, treatment side-effects, psychological health, patient understanding of the treatment regimen), physician-related (knowledge, awareness of guidelines, expertise, multidisciplinary team approach), and healthcare system-related (work-setting, access to treatments, cost) factors (Raparelli, 2017).

Ensuring patients are appropriately informed about treatment options, how to adhere to treatment, potential consequences of non-adherence, in addition to managing patient’s expectations of treatment goals, are crucial to promote adherence. Regular review by any member of the multidisciplinary team is important to identify non-adherence and implement strategies to improve adherence where appropriate.

Technology tools supporting atrial fibrillation management

Clinical decision support systems are intelligent systems that digitize and provide evidence-based guidelines, clinical pathways, and algorithms facilitating personalized, timely, and evidence-based treatment.

The MobiGuide project (Parmbelli, 2016) and several applications (Guo, 2017; Kotecha, 2018; Lee, 2016; Stephan, 2017) (supplementary tables 5 and 6) have been used to enhance patient education, improve communication between patients and healthcare professionals, and encourage active patient involvement. The ESC/CATCH-ME (Characterizing AF by Translating its Causes into Health Modifiers in the Elderly) consortium also has a smartphone/tablet app (Kotecha, 2018) for AF patients, but this is yet to be tested prospectively. A Cochrane review (Clarkesmith, 2017) demonstrated that patient decision-support aids reduce decision conflict (Man-Son-Hing, 1999; McAlister, 2005; Thomson, 2007; Eckman, 2018). Nevertheless, contradictory results (Vineareanu, 2017; Eckman, 2016; Karlsson, 2018) illustrate the need for more carefully designed studies, including assessment of the intervention’s effect on clinical events.

Advantages of integrated management of atrial fibrillation patients

Limited evidence exists on the effectiveness of integrated management of AF. Available intervention studies vary widely in number and content of ‘integrated care’ employed. Six studies—one cluster RCT (Vinereanu, 2017), four RCTs (Vinereanu, 2017; Hendriks, 2012; Stewart, 2015; Carter, 2016; Wijtvliet, 2020), and one before-and-after study (Carter, 2016) — of integrated AF management have demonstrated mixed findings (supplementary table 7). Two studies (Hendriks, 2012; Carter, 2016) and one meta-analysis (Gallagher, 2017) report significantly lower rates of cardiovascular hospitalization and death with nurse-led, integrated care, whereas others reported no effect of integrated care on these outcomes. One multifaceted study (Vinereanu, 2017) demonstrated improved OAC rates in the intervention group at 12 months. The IMPACT-AF study (Vinereanu, 2017) found no significant difference in the composite efficacy outcome (unplanned emergency department visit or cardiovascular hospitalization) or the primary safety outcome of major bleeding between intervention and usual care.

Measures (or approaches) for implementation of integrated management

Integrated management of AF requires a change in the current approach to patient care, to focus on moving from a multidisciplinary team to interdisciplinary working, including behaviour change for all AF team members and key stakeholders including patients and their family (Michie, 2011; Lip, 2018) (supplementary figure 3).

To understand whether integrated AF management has been implemented into clinical practice and had an impact on important outcomes (mortality, stroke, hospitalization, QoL, symptom reduction, etc.), a specific international standard set of outcome measures should be collected (supplementary figure 4) (Seligman, 2020). This would also highlight areas requiring further development.

Treatment burden

Patient-perceived treatment burden (Dobler, 2018) is defined as the workload imposed by healthcare on patients and its effect on patient functioning and well-being apart from specific treatment side-effects (Eton, 2012; Tran, 2012). It includes everything patients do for their health (drug management, self-monitoring, visits to the doctor, laboratory tests, lifestyle changes) and healthcare impact on their social relationships, potentially affecting adherence to treatment (Vijan, 2005; Vermeire, 2011), QoL, and outcomes (e.g., hospitalization and survival) (Ho, 2006; Rasmussen, 2007). Patient-perceived treatment burden is influenced by their knowledge about disease (Tran, 2012). Patients with similar treatment regimens may have very different treatment burden (May, 2009), with only a weak agreement between patient’s and physicians’ treatment burden evaluation, suggesting that the patient’s experience is not shared in depth during consultations (Tran, 2012; Wilcox, 2010; Bohlen, 2012).

Treatment burden can be overwhelming for patients with multiple chronic conditions (Eton, 2012) (e.g., those with three chronic conditions would have to take 6 - 12 medications daily, visit a healthcare giver 1.2 - 5.9 times per month, and spend 49.6 - 71.0 h monthly in healthcare-related activities (Buffel du Vaure, 2016)). Treatment burden in AF patients is largely unknown. In a single-centre prospective study, AF patient-perceived total treatment burden was higher than in patients with other chronic conditions (27.6% vs. 24.3%, P =0.011), and 1 in 5 AF patients reported a high treatment burden that could question the sustainability of their treatment. Notably, AF patients attributed the highest proportion of treatment burden to healthcare system-related aspects (e.g., attending appointments etc.) and lifestyle modification requirements. Female sex and younger age were independently significantly associated with a higher treatment burden, whereas non-vitamin K antagonist oral anticoagulants (NOACs) and rhythm control reduced the odds for high treatment burden by >50% (Potpara, 2020).

The discussion of treatment burden should be an integral part of shared, informed treatment decision making, and treatment burden can be assessed using a validated questionnaire (Tran, 2014).

Patient-reported outcomes

There is increasing advocacy for including patient-reported outcomes (PROs) as endpoints in clinical trials (Steinberg, 2019) and their routine collection (Calvert, 2019; Rotenstein, 2017; Van der Wees, 2014) to improve care and assess treatment success from the patient’s perspective. Patients’ experience of AF and its management is highly subjective; AF management has become increasingly complex, potentially resulting in significant treatment burden and poorer health related QoL.

Measuring outcomes that are important to patients, in addition to ‘hard’ clinical endpoints (death, stroke, major bleeding, etc.), can inform AF management. An international consortium of AF patients and healthcare professionals has identified the following PROs as important to measure for AF: health-related QoL, physical and emotional functioning, cognitive function, symptom severity, exercise tolerance, and ability to work (supplementary figure 4) (Seligman, 2020); PRO measures can be used to assess these factors and the international standard set of AF outcome measures proposes some tools for assessing PROs Seligman, 2020). Health informatics systems could help capture PRO data. Despite increasing support for the role of PRO measures in healthcare management, few studies and registries report collecting PRO data using validated tools (Steinberg, 2019). Implementation of PRO measures in the management of AF patients is addressed in a dedicated expert consensus paper developed in collaboration with patient representatives by the EHRA (Arbelo, 2020).