Patient engagement in care: A scoping review of recently validated tools assessing patients' and healthcare professionals' preferences and experience

Abstract Background Patient engagement in care is a priority and a key component of clinical practice. Different approaches to care have been introduced to foster patient engagement. There is a lack of a recent review on tools for assessing the main concepts and dimensions related to patient engagement in care. Objective Our scoping review sought to map and summarize recently validated tools for assessing various concepts and dimensions of patient engagement in care. Search Strategy A scoping review of recent peer‐reviewed articles describing tools that assess preferences in and experience with patient engagement in care was conducted in four databases (Ovid Medline, Ovid EMBASE, Cochrane Database of Systematic Reviews, CINAHL‐EBSCO). We adopted a broad definition based on the main concepts of patient engagement in care: patient‐centredness, empowerment, shared decision‐making and partnership in care. Main Results Of 2161 articles found, 16, each describing a different tool, were included and analysed. Shared decision‐making and patient‐centredness are the two main concepts evaluated, often simultaneously in most of the tools. Only four scales measure patient‐centredness, empowerment and shared decision‐making at the same time, but no tool measures the core dimensions of partnership in care. Most of the tools did not include patients in their development or validation or just consulted them during the validation phase. Discussion and Conclusion There is no tool coconstructed with patients from development to validation, which can be used to assess the main concepts and dimensions of patient engagement in care at the same time. Patient and Public Contribution This manuscript was prepared with a patient expert who is one of the authors. Vincent Dumez, who is a patient expert and codirector of the Center of Excellence on Partnership with Patients and the Public, has contributed to the preparation of the manuscript.


| INTRODUCTION
Patient engagement in health policies, healthcare planning and improvement and direct care is recognized as a cornerstone of quality and safety. 1 Engaging patients in care has become a priority and a key component of clinical practice in many countries around the world. 2 Evidence suggests that engaging patients can help (re)shape their care and treatment in ways that fit their needs and preferences, ultimately resulting in improved outcomes. [3][4][5][6] Over the last few decades, various approaches to care have been introduced in clinical practice to foster the integration of patient engagement into the delivery of healthcare.
In the 1990s, the patient-centred care approach gradually replaced the medical paternalism that has dominated healthcare for decades. 7 The patient-centred care model involves integrating patients' needs and preferences into the delivery of care, 'moving away from a logic of "care to patients" towards one of "care for patients"'. 7 Patient-centred care is based on a patient-oriented perspective of care that includes what patients consider important for their life project. 7 In the last two decades, collaborative approaches have emerged, moving towards a logic of 'care with patients'. For example, shared decision-making encourages patients to take part in decisions on their care, 8,9 while self-management or patient education approaches seek to strengthen patients' knowledge and skills to better empower them in their care process. 10,11 More recently, the 'partnership in care' approach has considered patients as full-fledged members of healthcare teams. 12 This new model builds on aspects of each care approach, including the integration of patient needs and preferences into care delivery, the participation of patients in care decisions, the coconstruction of a care plan with them and the development of patients' capacities to manage their own care. 13 A previous empirical study on patient partnership from the patients-as-partners perspective was able to define partnership in care as the proactive efforts by patients to fill the gap between their preferences or expectations in the care relationship and what they experience during a consultation with a healthcare professional (HCP). 12 All these approaches to care are part of a continuum of engagement, from consultation to partnership in care, that reflects the increasingly important role played by patients in their own care. 1 As patient engagement in care has become a clinical standard in healthcare settings, a growing number of scales have been developed in recent decades for effective quality improvement. Previous reviews have identified, synthesized and appraised the tools used to assess some dimensions of care/approaches to care. A recent systematic review by Philipps et al. 14 focuses on studies published between 2005 and 2014 that described tools for assessing patient participation in healthcare. Their review only includes tools that measure approaches related to self-management and decision-making, without including tools that assess patient-centred care. Conversely, a review by Ree et al. 15 synthetizes information on patient-centred care tools, with a special focus on how patients are involved in the care. Lastly, a review by Jerofke-Owen et al. 16 identifies and appraises tools that measure self-reported patients' preferences in engagement, without considering tools that assess patient experience in engagement or HCPs' preferences in and experience with engaging patients. However, as patient engagement is part of the care relationship between patients and HCPs, it is important to identify the various tools used to assess both patients' and HCPs' preferences and experience in this area. In addition, the literature lacks a broad review of the recently validated scales used to assess the central dimensions on which the different approaches to care (from consultation to partnership in care) are based and that coexist in clinical practices.
The objective of this scoping review was therefore to map and summarize recently validated tools that assess patient engagement in care. To this end, several specific objectives were pursued: (1) to identify tools used to assess both patients' and HCPs' preferences in and/or experiences with patient engagement in care; (2)  | 1925 approaches to patient engagement in care, and together, they form the higher concept of partnership in care. According to Pomey et al., 18 the concept of partnership in care is an approach that considers the patient as 'a caregiver of herself and, as such, a genuine member of the treatment team, endowed with competencies and limitations just like any other member of the team'. We believe that the concept of partnership can be summarized by all the dimensions on which each approach to care is based, 7 including individualized care, empathy, interpersonal trust, communication, experiential knowledge and self-care. A summary of these concepts' definitions and dimensions is presented in Table 1.
We used the continuum of patient involvement in research 18 to identify the level of patient involvement in tool development and validation. We considered three levels of involvement: (1) consultation of patients, which refers to asking for patients' input during the validation of the tool; (2) collaboration with patients, which corresponds to involving them in the selection and wording of items; and (3) partnership, which refers to coconstructing the tool with patients, from its development to its validation.

| Review approach
We conducted a scoping review to map recent evidence on validated scales for assessing patient engagement in care. 19 We chose to conduct a narrative synthesis of the literature to describe the major characteristics of the tools, including the measurement objective, the concepts and dimensions assessed, the clinical context of utilisation and the development and validation characteristics of the tools. We followed the PRISMA extension for scoping reviews to apply a systematic approach when conducting the review and reporting the results. 20

| Searches and screening
We searched for articles published between 2014 and 2021 in four major health and social science databases: Ovid MEDLINE, Ovid EMBASE, the Cochrane database of systematic reviews and EBSCO-CINAHL. We decided to search for articles published starting from 2014 since a previous systematic review by Philipps et al. 14 searched for articles published from 2005 to 2013 that described tools for measuring patient participation in care. As Philips et al. 14 adopted a rather broad definition of patient engagement in care (shared decision-making, self-care and patients having self-knowledge), we wanted to ensure that our review would not duplicate any previous reviews on this topic. The initial search was conducted on 19 January 2021. The search terms used are presented in Table 2. These correspond to the six major concepts searched for, related to patient, engagement, assessment, scale, clinical care and validation. Our

| Inclusion and exclusion criteria
We included both original and review articles describing the development and validation of scales assessing patient engagement in adult inpatient or outpatient care. The inclusion and exclusion criteria are detailed in Table 3.

| Extraction methods
Data from the included articles were charted on an extraction grid (File S2) according to the following categories: (1) the general presentation of the scales (e.g., first author, year of publication, title of

| Search results
Our initial search yielded a total of 2161 articles. After removing duplicates, a total of 2002 articles were screened. This process resulted in a total of 71 full-text articles to be assessed for eligibility.
One of them, a review of surveys for measuring patient-centred care in the hospital setting, 21 included two tools published after 2014: the Family Inventory of Needs 22

and the Person-Centred Climate
Questionnaire-Family Version (PCQ-F). 23 Consequently, we have added the two articles corresponding to the development and validation of these tools to assess them against our full eligibility criteria.

| Study characteristics
We identified a total of 16 articles, representing 16 different tools,      29 Health professionals' perspective, experience of engagement

| Concepts and dimensions assessed with the tools
We categorized the dimensions assessed in each tool into the main concepts of engagement, which include patient centredness, em-  Figure 2 shows the number of tools assessing one or several concepts of patient engagement in care.

| Involvement of patients in tool development or validation
A total of eight tools (50%) did not include patients in their development or validation or did not report having involved patients, and eight were partly developed with patients. For five of them (31%), the involvement of patients consisted mostly of consulting them to validate the tool, including with respect to face or content validity. 24,27,31,32,36 Three tools (19%) were developed in collaboration with patients for item development through focus groups or indepth interviews or by including patients in expert panels. 26,34,37 Nevertheless, none of the tools were coconstructed in partnership with patients from item development to the validation phase. Table 4 presents details on perspectives on patient engagement as measured by the tools, the concepts and dimensions assessed and patient involvement in tool development and validation.

| Psychometric properties of the validated tools
Lastly, in terms of psychometric properties, the reported reliability indices of the tools (Cronbach's α, the reliability index for multidimensional scales and the person separation index) were between  38 Health professionals' perspective, experience of engagement

| Strengths and limitations
The main strengths of this scoping review are its broad search strategy, which was based on a broad conceptual framework. This allowed us to include various tools assessing the various concepts related to patient engagement in care, and their identification of the levels of patient involvement in tool development and validation. We also used systematic methods to conduct our scoping review, as two reviewers independently screened articles and extracted data, 43 and we complied with the PRISMA extension for scoping reviews. 20 Lastly, we mapped our findings with the broad conceptual framework used to develop our search strategies. conceptual framework on patient engagement was not strictly identical to the one that we adopted for our scoping review. However, in their systematic review, Phillips et al. 14 included two of the three main concepts of patient engagement (shared decision-making and self-care) that we included in our own conceptual framework. For this reason, we may have missed some relevant tools measuring patient-centred care by applying this limit. | 1933 considered as important by researchers or HCPs. Engaging patients in healthcare research is largely encouraged as it adds value, quality and appropriateness to the research process and outputs. 45 This practice is even more essential when developing a tool that specifically seeks to measure the key dimensions of patient engagement in care. Lastly, the tools that were found in this scoping review only assess preferences in or experience with engagement in care. Nevertheless, measurement of engagement should focus on both patients' preferences in and experience with engagement as a means to appropriately identify the gap between their expectations and experience with their HCPs. A tool measuring this gap in patient engagement could help HCPs to improve the way they interact with patients during consultations, thus improving the quality of care.

| Conclusion and implications for clinical practice and research
The partnership in care approach, which builds on and integrates various approaches to care and dimensions of patient engagement, has started to be applied in clinical practices and different clinical settings. We therefore argue that there is a need for an exhaustive tool that (1)