Leveraging the timing and frequency of patient decision aids in longitudinal shared decision‐making: A narrative review and applied model

Abstract Introduction Shared decision‐making (SDM) is intended to increase patient‐centredness of medical decision‐making for patients with acute and chronic conditions. Concurrently, patient decision aids (PtDAs) can supplement SDM by providing information to guide communication between patients and healthcare providers. Because of the prevalence of chronic conditions, where decisions may be extended or recurring, we sought to explore how effectively these tools have been leveraged in this context. Methods We conducted a narrative review of the literature on both SDM and PtDAs, searching PubMed and Boston University's library database search tool for English‐language articles published from January 2005 until March 2021. Additional search terms focused on temporality. Drawing from our findings, we developed a combined framework to highlight areas for future research using the discussion of end‐of‐life decisions as an exemplar to illustrate its relevance to chronic care contexts. Results After screening 57 articles, we identified 25 articles that fulfilled the inclusion criteria on SDM, PtDA use and temporality for chronic care. The literature on SDM highlighted time outside of the medical visit and opportunity to include outside decision partners as important elements of the process. PtDAs were commonly evaluated for process‐related and proximal outcomes, but less often for distal outcomes. Early evidence points to the value of comparative outcome evaluation based on the timing of PtDA distribution. Conclusion Our review of the literature on SDM and PtDAs reveals less attention to the timing of PtDAs relative to that of SDM. We highlight the need for further study of timing in PtDA use to improve longitudinal SDM for chronic care. The model that we propose in our discussion provides a starting point for future research on PtDA efficacy. Patient or Public Contribution Five patient consultants provided input and feedback on the development and utility of our model.

Despite frequent application to acute care delivery or one-time decisions, SDM is also highly relevant within the context of chronic care.
Key features of SDM that may be particularly salient for chronic care include recognition of decision partners, time for patient reflection and occurrence of decision-supporting activities external to the provider visit. [5][6][7] However, a systematic review of SDM implementation found low levels of patient engagement in SDM for both chronic and acute conditions, indicating opportunity for improvement in both settings. 8 Further, a thematic analysis noted that measurement challenges are rooted in the fact that SDM occurs over time. 9 Patient decision aids (PtDAs) are valuable, prevalent tools to facilitate SDM 10 and typically target a specific healthcare decision. They improve patient knowledge and patient-centred outcome measures, with increased effect when designed at the appropriate health literacy level. 11,12 PtDAs can be distributed at various timepoints, including before, during or after a healthcare encounter; however, their use is often limited by provider-level (e.g., disagreement with the content of materials) and system-level barriers (e.g., lack of organizational support, limited provider time, poor continuity of care). [12][13][14][15][16] Therefore, this paper aims to describe SDM and PtDAs in the context of care for chronic conditions. We begin by reviewing the literature on SDM and PtDAs, with particular focus on the temporal elements of each (i.e., the inclusion of concepts related to decisions occurring over time). Following this, we discuss our proposed intersection between the two concepts, illustrating how PtDAs might be timed for current models of SDM and later evaluated through this lens to determine optimal use. Finally, to demonstrate conceptual utility, we apply our framework to SDM about care towards the end of life, one of many contexts of SDM that unfolds over time.

| METHODS
Following guidance promulgated by the Scale for the Quality Assessment of Narrative Review Articles, 17  we consulted with five members of an expert advisory panel. 18 Using videoconferencing technology, we conducted two listening sessions (with three and two participants, respectively). We asked panel members to consider real or hypothetical experiences using decision aids and provide opinions on the model and its utility. Notes were taken during the session, and focus groups were recorded for reference.

| RESULTS: SDM
In contrast to acute care, decisions for chronic conditions are typically less time-sensitive, involve subsequent opportunities to readdress and engage patients' social networks in decisionmaking. 6 Because ongoing conditions are often characterized by a long-term relationship with a physician or other healthcare provider (HCP), development of self-efficacy on the part of the patient and decisions being implemented beyond the clinical environment, the timeline of the decision-making process inherently extends beyond one isolated event. 5,7 The original SDM model was developed in the context of acute care delivery; thus, Montori, Gafni and Charles 6 argued that it must be adapted for successful provision of chronic care. Others have found fault with the narrow view of SDM as occurring solely within the medical visit and between the two parties of patient and provider. [19][20][21][22][23][24][25] There is growing recognition that patients may consult outside individuals and materials before, between and/or after healthcare visits to encompass the multidimensional, lived reality of decision-making. 5 5,7,19,21,22 Having a lay (i.e., nonmedical) person involved in decision-making can be an asset. 19,23,24 In some cases, partners may be present at a healthcare visit; however, more commonly, the patient may consult with these individuals outside of visits for advice, opinions or support before reaching a final decision with their HCP. 7 Beyond this, it is simplistic to assume that patients enter a clinic as completely selfcontained beings; rather, their autonomy is 'relational', existing as members of complex social and interpersonal networks. 7,19,21 Internet resources are also likely to inform SDM because of their ubiquity and ease of access, 7,19,25 and they may introduce supporting or countering perspectives into the patient-provider encounter. 20 These various inputs add complexity to what the patient brings to a medical decision, making it important for the HCP to assess the influence of these external factors on each patient's values.

| RESULTS: PtDAs
While the utility of decision aids for single-timepoint-based SDM is well supported, 10 and the importance of L-SDM for chronic care has been clearly demonstrated, the use of PtDAs to facilitate L-SDM remains relatively unexplored. PtDAs are tools that may be used by HCPs to present options and guide patients to a decision. They vary widely in format and may be designed as brochures, videos or internet-based information. 29 They are often distributed before or during a clinical encounter. Previsit PtDAs typically provide comprehensive information about treatment options and are intended to be used before the visit so that the patient is primed for decision-making. 12,26 In-visit (also known as 'point-of-care', 'encounter' or 'conversational') PtDAs are often less complete because they are meant to promote patient-provider dialogue, sometimes through engaging visuals. 12,14,26 Use of postvisit PtDAs, or take-home materials, has also been documented, 27,29 but there is little information about their structure or effectiveness.

| Benefits of using PtDAs
PtDAs promote SDM in many ways. Patients equipped with information are more likely to engage in their healthcare decisions, 4 and PtDA use is correlated with decision-making that aligns with patient values. 28 According to a systematic review of provider satisfaction, clinicians found value in PtDAs as a reminder to engage patients, a facilitator of dialogue and a method of information-sharing grounded in evidence that reduced providers' burden of educating patients. 30 From a system-level perspective, wide use of PtDAs can increase uniformity and promote adherence to standards of care. 31

| Outcome metrics to evaluate the effect of PtDAs
To date, there has been little comparative evaluation of PtDA outcomes based on variability in the timing of distribution (e.g., previsit vs. in-visit).
Instead, many systematic reviews and meta-analyses have attempted to assess patient-associated outcomes and, less often, provider-associated outcomes. Commonly measured patient-associated outcomes are both process-related (e.g., occurrence of an SDM discussion, patient-provider communication) and proximal (e.g., patient knowledge and satisfaction, decisional conflict, decisional regret). [32][33][34][35][36] There was less evidence for distal outcomes (e.g., health and behavioural health status, quality of life). 33,34,36 Provider-associated outcomes primarily assessed satisfaction, efficiency and personal and professional well-being. 30 One systematic review looked at healthcare system outcomes, including cost, costeffectiveness, consultation length and litigation rates. 36 We identified two systematic reviews of PtDA for palliative care settings, which evaluated 12 and 16 tools, respectively. Both reviews assessed quality and demonstrated efficacy of the tools, and one review further evaluated specific process and proximal outcomes. 37,38

| Timing of decision aid use
As a tool to facilitate SDM in general, PtDA placement in the decision-making cycle can impact both patient and provider outcomes. Most studies evaluating PtDA effectiveness have not tested the optimal timing of distribution, and yet, a few studies did yield promising evidence. Although a systematic review comparing studies that used previsit versus in-visit distribution found no differences in the mean patient knowledge or risk-perception scores, 36 another study compared pre-visit and in-visit distribution of the same PtDA and found significantly higher knowledge scores in the in-visit group. 39 Additionally, Hsu et al. 29 noted variation in the timing, but not frequency, of PtDA use across six specialty areas, suggesting that optimal strategies are context-dependent. The impact of the PtDA timing and frequency on providers' experience is also unclear. Whereas some studies have indicated that providers prefer previsit PtDAs due to time constraints and distribution barriers, 13,27,29,40 others suggest that in-visit PtDAs are more effective at facilitating SDM. 12 While 65%-87% of patients express a desire to participate in end-of-life treatment decisions, providers used SDM in fewer than half of palliative care visits. 44 Focus groups of HCPs identified potential explanations for minimal use of SDM: some felt that providing information about these sensitive topics might signal giving up or defeat, or that making decisions against life-sustaining treatment were contrary to their goal of saving lives. 45 In addition, providers expressed concern that PtDAs-explicit patient-facing tools to support SDM-were 'devaluing' their role in facilitating difficult conversations with patients. However, patients reported a preference for SDM early in their illness trajectory, noting in particular that they would like preparation for code status discussions. 45 While decision partners may be present for any medical decision, their inclusion is especially relevant in the context of ACP. They may be participants and discussants, or they may serve as proxies for underage or incapacitated patients. 46 As a result, these decision partners may have in-depth conversations with the patient outside of the clinic or even be present for the medical visit itself. Additionally, patients and providers recommend an upstream approach to ACP, starting early in life or course of illness and evolving over time. 45 Even though the patient may be residing in the hospital, processing and dialogue are likely to occur in the intervals between discussions with the provider. Taken together, L-SDM is especially pertinent to end-of-life care.
For patients with advanced illness, PtDAs have been shown to increase their sense of empowerment and control by affirming their choices, encouraging future proactivity and strengthening motivation. 47 Decision tools used in this context are a mix of previsit and in-visit PtDAs. 40 A focus group eliciting provider preferences found disparate views on optimal timing. 45 For end-of-life care, it may be valuable to assess desired outcomes for the same PtDA distributed before, during or after the visit. Patients and caregivers also express interest in being more informed rather than less informed when it comes to ACP decisions. 44  Ultimately, the implications of evaluating optimal timing and frequency for PtDAs in L-SDM are far-reaching. By introducing, understanding and leveraging how these two factors impact the process of decision-making-and the resulting choice-we may improve patient and provider outcomes.