Article Text

Shared decision making in older patients with symptomatic severe aortic stenosis: a systematic review
  1. Judith J A M van Beek-Peeters1,
  2. Elsemieke H M van Noort2,
  3. Miriam C Faes2,
  4. Annemarie J B M de Vos3,
  5. Martijn W A van Geldorp1,
  6. Mirella M N Minkman4,5,
  7. Nardo J M van der Meer4,6
  1. 1 Department of Cardiothoracic Surgery, Amphia Hospital, Breda, The Netherlands
  2. 2 Department of Geriatrics, Amphia Hospital, Breda, The Netherlands
  3. 3 Nursing Council, Amphia Hospital, Breda, The Netherlands
  4. 4 TIAS, School for Business and Society, Tilburg University, Tilburg, The Netherlands
  5. 5 Vilans, Centre of Expertise for Long-term Care, Utrecht, The Netherlands
  6. 6 Department of Anesthesiology, Amphia Hospital, Breda, The Netherlands
  1. Correspondence to Judith J A M van Beek-Peeters, Cardiothoracic surgery, Amphia Hospital, Breda 4800 RK, The Netherlands; jvanbeek1{at}amphia.nl

Abstract

This review provides an overview of the status of shared decision making (SDM) in older patients regarding treatment of symptomatic severe aortic stenosis (SSAS). The databases Embase, Medline Ovid, Cinahl and Cochrane Dare were searched for relevant studies from January 2002 to May 2018 regarding perspectives of professionals, patients and caregivers; aspects of decision making; type of decision making; application of the six domains of SDM; barriers to and facilitators of SDM. The systematic search yielded 1842 articles, 15 studies were included. Experiences of professionals and informal caregivers with SDM were scarcely found. Patient refusal was a frequently reported result of decision making, but often no insight was given into the decision process. Most studies investigated the ‘decision’ and ‘option’ domains of SDM, yet no study took all six domains into account. Problem analysis, personalised treatment aims, use of decision aids and integrating patient goals in decisions lacked in all studies. Barriers to and facilitators of SDM were ‘individualised formal and informal information support’ and ‘patients’ opportunity to use their own knowledge about their health condition and preferences for SDM’. In conclusion, SDM is not yet common practice in the decision making process of older patients with SSAS. Moreover, the six domains of SDM are not often applied in this process. More knowledge is needed about the implementation of SDM in the context of SSAS treatment and how to involve patients, professionals and informal caregivers.

  • aortic stenosis
  • quality and outcomes of care
  • transcatheter valve interventions
  • valve disease surgery

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Introduction

Selecting the appropriate treatment of symptomatic severe aortic stenosis (SSAS) in older patients is challenging. Aortic stenosis is found in 3%–4% of persons over 75 years of age and increasing to 10% in octogenarians.1 2 Once patients become symptomatic (eg, dyspnoea on exertion, decreased exercise tolerance, evolving to syncope and angina) mortality is 50% within 2 years when left untreated.2 3 SSAS is associated with loss of physical function, decreased quality of life and high mortality.4 Treatment options for SSAS in older patients include medical (non-surgical) treatment (MT), transcatheter aortic valve replacement (TAVR) and surgical aortic valve replacement (SAVR). Appropriate individual decision making in patients with SSAS is complex due to the multiple treatment options, patient characteristics, including multimorbidity (eg, lung disease and severe chronic kidney disease), frailty, disability, impaired cognition and personal preferences of both patients and healthcare professionals.5 Professional guidelines for SSAS3 4 6 therefore recommend shared decision making (SDM) for the integration of preferences and values of those involved.

SDM is the well-defined process, which takes place when professionals and patients discuss care decisions, thereby using the best available evidence and their own preferences and personal goals.7 The result of this process is a thoroughly considered decision.7 SDM increases patient’s knowledge of treatment options, initiates accurate risk perception and creates participation and comfort with decisions and the decision making process.8 Moreover, it improves patient satisfaction and reduces undesired care in certain categories of patients.9 Older patients with multiple chronic conditions might have other goals and expectations of care and treatment than younger patients.10 Although SDM is a valuable part of the therapeutic process, it can be difficult for older patients to participate. In addition, healthcare providers are limited in examining their patient’s individual expectations.10

To address this issue, a dynamic model for SDM in Frail Older Patients (SDM-OLD) was developed.11 This goal-oriented model structures the conversation between patient and professional. It divides the SDM process into six domains: preparation, goal, choice, option, decision and evaluation. Every domain is characterised by exemplary questions to facilitate the conversation. Implementing the process of SDM in daily practice is influenced by various barriers and facilitators. Barriers are the professional’s behaviour, their knowledge of and attitude towards SDM.12 Limiting patient factors are knowledge and power imbalance.13 Despite recommendations in professional guidelines3 4 6 and expanding knowledge of SDM, the current experience with SDM in older patients with SSAS seems limited. Given the expected increase in the number of older patients referred for complex cardiac procedures, the need for an appropriate and individual tailored decision making process is compelling.14 The objective of this study is to provide an overview of the status of SDM in the treatment of older patients with SSAS and to review to what extent the domains of SDM are incorporated in the current treatment practice of SSAS. Additionally, this study aims to review perspectives of those involved and barriers and facilitators of SDM in the treatment of SSAS.

Methods

A narrative review was performed to summarise and interpret findings across studies.15

The Preferred Reporting Items for Systematic Reviews and Meta-analysis statement was used to ensure systematic analysis of the content.16

Search strategy and information resources

The databases Embase, Medline Ovid, Cinahl and Cochrane Dare were systematically searched for relevant articles covering the period from January 2002 (when TAVR became available) to May 2018. A comprehensive range of Medical Subject Headings (MeSH) terms and key words for ‘aortic valve stenosis’, ‘heart valve replacement’, ‘decision making’ and ‘aged’ were used for each database (online supplementary table S1). The search was limited to studies in English. Additionally, backward snowballing was applied to include additional relevant studies.

Supplemental material

Eligibility criteria

Studies were eligible for inclusion if the following criteria were met: (1) original collection of quantitative or qualitative data or a systematic review; (2) the study design targeted patients referred to the hospital for treatment of SSAS; (3) the study focused on treatment for SSAS, including MT, SAVR or TAVR. Combinations of cardiac interventions were also included, for example, AVR and CABG or TAVR and percutaneous coronary intervention; (4) the study targeted older people aged 70 years and older. The 70-year threshold was set in compliance with the definition of frail older patients in the Dutch hospital safety management system (Veiligheidsmanagementsysteem).17 This programme aims to avoid functional loss in patients of 70 years and older during hospital admission; (5) the study reported elements influencing the decision of treatment and/or reported how these elements were used in the decision making process; and (6) the study focused on either the inpatient or outpatient clinic and a monodisciplinary or multidisciplinary setting.

Patient and public involvement

Patients or the public were not involved in the design, or conduct, or reporting, or dissemination of our research.

Study selection

The study selection was performed by using a two-step approach. The first search included reviews. After removing duplicates, one researcher (JJAMvB-P) independently screened each title and abstract to exclude irrelevant papers. To ensure validity, two other researchers (AJBMdV and MCF) reviewed a pilot of 30 reviews based on title and abstract. In the second search, including original research articles of decision making, two researchers (JJAMvB-P and EHMvN) independently analysed each title and abstract. The remaining full-text articles of both searches were screened on eligibility criteria by two researchers (JJAMvB-P and EHMvN). Disputes were settled by reaching consensus between the third (MCF) and fourth (AJBMdV) researcher. Reasons for exclusion were noted based on full-text screening.

Data extraction and quality assessment

Two researchers (JJAMvB-P and EHMvN) independently assessed the full-text articles on relevant elements of decision making. Disputes were discussed with the other researchers (MCF, AJBMdV, NJMvdM and MMNM) until consensus was reached. We combined the SDM-OLD model11 and the Expert Consensus Decision Pathway for Transcatheter Aortic Valve Replacement in the Management of Adults with Aortic Stenosis3 to develop the SDM-SSAS model (figure 1). This model was used to structure the elements of decision making in this study. Furthermore, we identified barriers and facilitators for decision making.

Figure 1

Combined SDM-SSAS model (SDM-OLD and consensus decision pathway TAVR).3 11 ACC, American College of Cardiology Expert Decision Pathway TAVR, Table 1 section 5.1.5; SDM, shared decision making; SSAS, symptomatic severe aortic stenosis; TAVR, transcatheter aortic valve replacement.

The following data were extracted for each study: study characteristics (author, country of origin, reference, study design, objective, patient characteristics, treatment, quality score and main results), perspective (professional, patient and caregiver), aspects of decision making, type of decision making, presence of the six SDM-SSAS domains (preparation, goal, choice, option, decision and evaluation), barriers and facilitators.

The quality of the reviews was assessed using A Measurement Tool to Assess systematic Reviews (AMSTAR). This is a critical appraisal tool for systematic reviews, including randomised or non-randomised studies of healthcare interventions, or both.18 The rating of overall confidence in the results of the review is classified in high, moderate, low or critically low.

The quality of original research articles was assessed using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (SQAC).19 The 14-item checklist provides a systematic and quantifiable means for assessing the quality of studies of a variety of research designs and has demonstrated to be useful in reviews about SDM.12 13 We used the quality scores of the SQAC to define a minimum threshold for the inclusion of the studies in this review. The cut off-point for exclusion was set at <0.55 (range 0–1).

Results

Study selection

The database searches identified 610 reviews and 1232 original research articles. Two studies were identified by backward snowballing (figure 2). After removing duplicates and screening of titles and abstracts, 57 studies were selected for full-text screening. Eventually, 15 studies met the inclusion criteria and were included in the review.

Figure 2

Flow chart of the selection process.

The most frequent reasons for exclusion were no systematic review (n=6) in search 1 and not reporting about decision making (n=19) or expert opinion (n=5) in both searches 1 and 2.

Study characteristics

Most studies originate in Europe, four in the USA and two in Canada (table 1). Six studies have a qualitative design,20–25 while eight studies have a quantitative one.26–33 The eligible review34 included both quantitative and qualitative studies. The majority of studies focused solely on decision making in TAVR20–25 31 while three studies focused on decision making in all treatment options.26 28 33

Table 1

Characteristics of included studies

All qualitative studies scored >0.70; all quantitative studies scored >0.81, thereby meeting the quality standard for inclusion within the SQAC criteria (online supplementary table S2).19 The review34 demonstrated moderate quality according to the AMSTAR criteria.18

Supplemental material

Characteristics of decision making

The decision making aspects were divided in decision making experiences20–25 28 34 and treatment decisions.26 27 29–33

Decision making experiences were mostly reported from the patient’s perspective and one study used the informal caregiver’s perspective20 (table 2).

Table 2

Characteristics of decision making

Experiences included values, preferences and coping,20 21 34 goals and patterns of decision making22 24 25 and patient involvement or autonomous choice.23 28 Treatment decisions were mostly reported specific from the professional’s perspective. Patient refusal of treatment and high (peri) operative risk were often reported as the two most important reasons for the treatment decision.28 29 31 No details were given on the refusal process itself.

Overall, the type of decision making could be retrieved in a minority of the studies. SDM and more specific, the quality of SDM was mentioned in three studies.21 23 28

All six domains of SDM were described in the fifteen studies, but no study took all domains into account (table 2). Studies concerning octogenarians20–26 28 30–32 included more SDM domains than studies concerning patients aged 70–75 years.27 29 33 34

The decision domain was most represented22–25 27–29 31–33; the evaluation domain was hardly represented28 (figure 3). The option domain was analysed in more than half of the studies.20 22 24 25 28 30 34 In a minority of the studies, the preparation,26 27 30 goal 20 21 25 28 29 and choice domain20 21 27 were analysed.

Figure 3

SDM-SSAS domains in relation to perspectives in included studies. 20–34: study numbers SDM, shared decision making; SSAS, symptomatic severe aortic stenosis.

Domains SDM-SSAS

In the preparation domain (initial and functional assessment) geriatric components, such as functional status and physical performance were essential for preparing treatment decisions of professionals26 (table 3). In addition, patient characteristics were used by professionals for the preparation of risk scores (eg, Euroscore).27 30

Table 3

Elements of decision making in included studies according to the SDM-SSAS model

Decision making starts in the goal domain with patients’ understanding of SSAS and professionals asking patients to formulate goals of care (eg, ‘staying alive’ or ‘staying independent’).21 25 28 In this domain, patients want to discuss their expectations of treatment and explain their preferences.20 29 The feeling of involvement in the decision making process provides patients’ hope and confidence.25 In the choice domain, professionals set goals using patients’ experience of recovery in the context of comorbidities and discuss risks with patients by using risk scores.20 27 Professionals improve their understanding of the patients’ view using treatment goals formulated by patients, such as ‘reducing symptoms’ or most commonly, ‘increasing the ability to do a specific activity or hobby’.21

In the option domain, a diversity of aspects was found. Often patients mentioned they had limited options and felt they were exposed to examinations and facing death.20 25 Patients who were selected for MT mentioned that they did not have enough information about the pros and cons of treatment.28 30 34 Due to ongoing health issues, comorbidities influence patients’ views on symptom relief and quality of life after treatment. Comorbidities were also found to empower patients’ decision making as ‘the experienced patient’.20 24 34

In the decision domain, patient refusal of TAVR and AVR was the most common reason for MT noted by professionals.28 29 Other studies concluded that professionals mentioned a high operative risk as the most common reason for non-surgical treatment.27 33 Participating in final treatment decisions provides patients the possibility to make an autonomous decision.23 24 31 Yet, many patients with SSAS prefer to share the responsibility for the decision with others (eg, relatives), instead of deciding on his own.22

The evaluation domain was identified in one study, which reported about satisfaction with the decision making process. Medically managed patients are less likely to experience involvement in treatment decisions.28

Barriers and facilitators

Barriers and facilitators were studied from the patient’s perspective (table 4).

Table 4

Barriers and facilitators of SDM

The most frequently identified barrier was information support (information was perceived as ‘too little’ or ‘unimportant’).28 29 34 Other barriers were comorbidities, which influence expectations and symptom interpretation.25 34 Besides, comorbidities were also a facilitator making patients ‘experienced’, as they rely on their medical history, comparison with past significant medical experiences and ongoing medical management.25 34

Meeting different information needs (eg, information in advance and according to patterns in decision making)20 22 34 demonstrated to be an important facilitator. Having both formal and informal navigators (eg, family, cardiologist and surgeon) facilitates patients with SSAS in the decision making process20 29 34 and creates hope and confidence.23–25

Discussion

This narrative review provides an overview of the status of SDM in older patients in the treatment of SSAS. Specific emphasis was put on the application of the six SDM domains, perspectives of those involved and barriers and facilitators in this process.

Although the number of older patients with SSAS is increasing and guidelines recommend SDM,3 4 6 the number of studies on this topic remains limited. A dichotomy in the selected studies was notable, that is, studies on patient experiences versus studies on professional perspectives regarding the decision making process. In the perspectives of professionals and informal caregivers, experiences with SDM were scarcely found. The medical perspective described patient refusal for AVR and TAVR as an important reason for treatment decisions, but few studies gave insight in the process ahead of this decision.

Although the body of knowledge about SDM is expanding,35 36 studies investigating all domains of SDM were lacking. Some studies investigated specific domains, such as the decision and option domain of SDM-OLD. Currently, the preparation, goal, choice and evaluation domain were scarcely identified in the studies. Missing elements were problem analysis, personalised treatment aims, use of decision aids and integrating patient goals in decisions.

Although barriers and facilitators to SDM are known for patients and professionals,12 13 we mainly found barriers and facilitators reported from the patient’s perspective. An important barrier was insufficient information support, but this was also experienced as a facilitator when information needs where met. Additionally, having comorbidities was a barrier to SDM for patients, because other diseases were also causing symptoms. However, having comorbidities was considered a facilitator for ‘experienced’ patients.

SDM is increasingly recommended,3 4 6 but the process of SDM in the treatment of SSAS is still in its infancy. Physicians continue to make inaccurate assumptions about patient values and preferences, particularly in a medical culture that is focused on a ‘disease-outcome-based paradigm’.37 We found that integrating all domains of SDM in older patients with SSAS is not yet common practice. Also, in other areas in healthcare, SDM is still not routinely incorporated.36 It is known that in only 10% of the situations in which healthcare decisions have to be made SDM is practiced.38 Professionals also lack agreement with each other on the SDM process.39 40

This review showed a gap in formulating personalised treatment aims for patients with SSAS. Patients often do not feel empowered to express their goals when considering treatment options during a clinical visit.41

Information support was experienced as both an important barrier and facilitator. An appropriate level of knowledge is important as this is the principal enabler of SDM.13 However, information alone is not enough: it is interacting with other important factors, such as knowledge of personal preferences and goals.13 Additionally, patients sometimes underestimate their own expertise,13 despite their insight in their own particular condition and preferences.42

In this review, barriers and facilitators of professionals were not found. Yet, barriers and facilitators of health professionals are essential to SDM (eg, awareness, familiarity, agreement with SDM, factors associated with patients and environment).12 As SDM in healthcare is still emerging and more treatment possibilities for older patient with SSAS are developing, this could be an explanation for the lack of knowledge of SDM in this area.

This is the first study that, to our knowledge, provides an overview of SDM in patients with SSAS. The strength of this narrative review is the extensive and systematic approach of the literature search and analysis. Integration of both quantitative and qualitative studies of SDM in the treatment of SSAS is essential to develop and tailor adequate SDM interventions in this rapidly evolving area. Nevertheless, the results should be interpreted in the light of some limitations. First, the majority of the included studies were from Western countries, whereas this limits generalisability in countries with other referral patterns. Second, we only included patients referred to the hospital for treatment of SSAS. Therefore, the influence of the general practitioner in this process could not be taken into account. Lastly, the number of studies found was too limited to analyse subgroups of patients (eg, SAVR, TAVR or MT).

This study has highlighted the increasing need for integrating SDM in daily practice of SSAS treatment due to evolving treatment options (eg, evolving surgical techniques, alternative access TAVR43) and emphasis on patient-centred care. The indications for TAVR are extending to intermediate and low risk groups, and therefore a choice between two comparable treatment options with different risk–benefit ratio’s has to be made.4 44 45 This increases the need for a sound process of SDM. Besides surgical risk, guidelines for SSAS treatment recommend that heart teams ensure that ‘patient’s expectations can be met as fully as possible using an SDM approach’.4 This review indicates the need for professionals to implement a more complete process of SDM, starting with supporting patients acquiring and understanding knowledge about the available options, risks and benefits and also understanding what patients value in their lives. To integrate SDM in practice, important patient education and empowerment initiatives (eg, cardio-smart, https://www.cardiosmart.org) and patient decision aids (eg, MAGICapp, https://app.magicapp.org) are useful to consider. In addition, evaluation of the SDM process will improve when professionals ask patients about their satisfaction with agreements.

Integration and measurement of SDM has to be operationalised for daily practice, and participation of informal caregivers of patients with SSAS in SDM needs to be developed as they have an important role in the so-called ‘triadic decision making’ with older patients.46 For measuring SDM in practice, the Observer-OPTIONMCC was developed. This tool can be used to measure how and in which parts of the SDM process the participation of patient and informal caregivers manifests and to tailor empowerment interventions.47

Since problem analysis is an important preparation in the SDM process, consultation of a geriatrician is recommended in older patients with SSAS. A Comprehensive Geriatric Assessment can support a more holistic view on what matters to patients and their families in their daily lives.48

Further research in SSAS treatment should incorporate attention for behaviour, implementation and context of SDM with suitable designs, which are less usual in traditional medical studies. Observational studies need to give more insight in SDM behaviours of professionals, and implementation research needs to focus especially on professionals using SDM strategies in SSAS treatment. Additionally, the structure of healthcare systems is important for SDM research. Furthermore, outcomes of SDM for patients and professionals need clarification.

In conclusion, this narrative review showed that despite recommendations in professional guidelines, SDM is not yet common practice in the decision making process in the treatment of older patients with SSAS. There is a lack of evidence with regard to incorporating all domains of SDM, and it remains unknown how professionals and informal caregivers experience SDM in this context. Given that the number of patients, eligible for TAVR will increase fourfold over the next 5 years,43 healthcare professionals should incorporate all domains of SDM in the treatment of older patients with SSAS to ensure sustainable high-quality care. Patients and professionals need to clarify their participation in the decision making process, and healthcare organisations must facilitate implementation of SDM in the decision making process for patients with SSAS.

Acknowledgments

We wish to thank Wichor M Bramer, biomedical information specialist, Erasmus MC, University Medical Centre Rotterdam, for his help with the systematic search strategy.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Contributors JJAMvB-P, NJMvdM, MMNM, MCF and AJBMdV conceived the idea for the review and participated in the design. JJAMvB-P and EHMvN carried out the literature search, review and analysis of the selected publications. JJAMvB-P, NJMvdM, MMNM and MCF led on the drafting. All authors contributed substantially to writing the paper and all reviewed and approved the final draft.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Disclaimer We certify that this work is novel.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.