Development and psychometric evaluation of the Decisional Engagement Scale (DES-10): A patient-reported psychosocial survey for quality cancer care.
ABSTRACT: In light of recent health care reforms, we have provided an illustrative example of new opportunities available for psychologists to develop patient-reported measures related to health care quality. Patient engagement in health care decision making has been increasingly acknowledged as a vital component of quality cancer care. We developed the 10-item Decisional Engagement Scale (DES-10), a patient-reported measure of engagement in decision making in cancer care that assesses patients' awareness of their diagnosis, sense of empowerment and involvement, and level of information seeking and planning. The National Institutes of Health's ResearchMatch recruitment tool was used to facilitate Internet-mediated data collection from 376 patients with cancer. DES-10 scores demonstrated good internal consistency reliability (? = .80), and the hypothesized unidimensional factor structure fit the data well. The reliability and factor structure were supported across subgroups based on demographic, socioeconomic, and health characteristics. Higher DES-10 scores were associated with better health-related quality of life (r = .31). In concurrent validity analyses controlling for age, socioeconomic status, and health-related quality of life, higher DES-10 scores were associated with higher scores on quality-of-care indices, including greater awareness of one's treatments, greater preferences for shared decision making, and clearer preferences about end-of-life care. A mini-measure, the DES-3, also performed well psychometrically. In conclusion, DES-10 and DES-3 scores showed evidence of reliability and validity, and these brief patient-reported measures can be used by researchers, clinicians, nonprofits, hospitals, insurers, and policymakers interested in evaluating and improving the quality of cancer care. (PsycINFO Database Record
Project description:BACKGROUND:Large-scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the 'patient partner' in health-care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care. METHODS:Patient co-investigators and a researcher co-designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability. RESULTS:A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well-educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self-fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks. CONCLUSION:The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes.
Project description:BACKGROUND:Person-centered care is critical for delivering high-quality diabetes care. Shared decision making (SDM) is central to person-centered care, and in diabetes care, it can improve decision quality, patient knowledge, and patient risk perception. Delivery of person-centered care can be facilitated with the use of patient decision aids (PtDAs). We developed MyDiabetesPlan, an interactive SDM and goal-setting PtDA designed to help individualize care priorities and support an interprofessional approach to SDM. OBJECTIVE:This study aims to assess the impact of MyDiabetesPlan on decisional conflict, diabetes distress, health-related quality of life, and patient assessment of chronic illness care at the individual patient level. METHODS:A two-step, parallel, 10-site cluster randomized controlled trial (first step: provider-directed implementation only; second step: both provider- and patient-directed implementation 6 months later) was conducted. Participants were adults 18 years and older with diabetes and 2 other comorbidities at 10 family health teams (FHTs) in Southwestern Ontario. FHTs were randomly assigned to MyDiabetesPlan (n=5) or control (n=5) through a computer-generated algorithm. MyDiabetesPlan was integrated into intervention practices, and clinicians (first step) followed by patients (second step) were trained on its use. Control participants received static generic Diabetes Canada resources. Patients were not blinded. Participants completed validated questionnaires at baseline, 6 months, and 12 months. The primary outcome at the individual patient level was decisional conflict; secondary outcomes were diabetes distress, health-related quality of life, chronic illness care, and clinician intention to practice interprofessional SDM. Multilevel hierarchical regression models were used. RESULTS:At the end of the study, the intervention group (5 clusters, n=111) had a modest reduction in total decisional conflicts compared with the control group (5 clusters, n=102; -3.5, 95% CI -7.4 to 0.42). Although there was no difference in diabetes distress or health-related quality of life, there was an increase in patient assessment of chronic illness care (0.7, 95% CI 0.4 to 1.0). CONCLUSIONS:Use of goal-setting decision aids modestly improved decision quality and chronic illness care but not quality of life. Our findings may be due to a gap between goal setting and attainment, suggesting a role for optimizing patient engagement and behavioral support. The next steps include clarifying the mechanisms by which decision aids impact outcomes and revising MyDiabetesPlan and its delivery. TRIAL REGISTRATION:ClinicalTrials.gov NCT02379078; https://clinicaltrials.gov/ct2/show/NCT02379078.
Project description:Beyond the rhetorical call for increasing patients' engagement, policy makers recognize the urgency to have an evidence-based measure of patients' engagement and capture its effect when planning and implementing initiatives aimed at sustaining the engagement of consumers in their health. In this paper, authors describe the Patient Health Engagement Scale (PHE-scale), a measure of patient engagement that is grounded in rigorous conceptualization and appropriate psychometric methods. The scale was developed based on our previous conceptualization of patient engagement (the PHE-model). In particular, the items of the PHE-scale were developed based on the findings from the literature review and from interviews with chronic patients. Initial psychometric analysis was performed to pilot test a preliminary version of the items. The items were then refined and administered to a national sample of chronic patients (N = 382) to assess the measure's psychometric performance. A final phase of test-retest reliability was performed. The analysis showed that the PHE Scale has good psychometric properties with good correlation with concurrent measures and solid reliability. Having a valid and reliable measure to assess patient engagement is the first step in understanding patient engagement and its role in health care quality, outcomes, and cost containment. The PHE Scale shows a promising clinical relevance, indicating that it can be used to tailor intervention and assess changes after patient engagement interventions.
Project description:Background Bringing together generic and heart failure (HF)-specific items in a publicly available, patient-reported outcome measure may facilitate routine health status assessment for improving clinical care and shared decision-making, assessing quality of care, evaluating new interventions, and comparing groups with different conditions. Methods and Results We performed a mixed-methods study to develop and validate the PROMIS®-Plus-HF (Patient-Reported Outcomes Measurement Information System®-Plus-Heart Failure) profile measure-a HF-specific instrument based on the generic PROMIS. We conducted 8 focus groups with 61 patients with HF and phone interviews with 10 HF clinicians. The measure was developed via an iterative process of reviewing existing PROMIS items and developing and testing new HF items. In a 600-patient sample, we estimated reliability (internal consistency; test-retest, with n=100 participants). We conducted validity analyses using Pearson r and Spearman ? correlations with Kansas City Cardiomyopathy Questionnaire subscores. In a longitudinal sample, we performed responsiveness testing (paired t tests) with 75 patients with HF receiving interventions with expected health status improvement. The PROMIS-Plus-HF measure comprises 86 items (64 existing; 22 new) across 18 domains. Internal consistency reliability (Cronbach ?) coefficients ranged from 0.52 to 0.96, with ??0.70 in 12 of 17 domains. Test-retest intraclass correlation coefficients were ?0.90. Correlations with Kansas City Cardiomyopathy Questionnaire subscores supported expected convergent ( r/?>0.60) and divergent validity ( r/?<0.30). In the longitudinal sample, 10 of 18 domains had improved ( P<0.05) scores from baseline to follow-up. Conclusions The PROMIS-Plus-HF profile measure-a complete assessment of physical, mental, and social health-exhibited good psychometric characteristics and may facilitate patient-centered care and research. Subsets of domains and items can be used depending on the clinical or research purpose.
Project description:BACKGROUND:Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE:Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS:We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. RESULTS:In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. CONCLUSION:A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.
Project description:BACKGROUND:Emergency department (ED) physicians and nurses frequently interact with emotionally evocative patients, which can impact clinical decision-making and behaviour. This study introduces well-established methods from social psychology to investigate ED providers' reported emotional experiences and engagement in their own recent patient encounters, as well as perceived effects of emotion on patient care. METHODS:Ninety-four experienced ED providers (50 physicians and 44 nurses) vividly recalled and wrote about three recent patient encounters (qualitative data): one that elicited anger/frustration/irritation (angry encounter), one that elicited happiness/satisfaction/appreciation (positive encounter), and one with a patient with a mental health condition (mental health encounter). Providers rated their emotions and engagement in each encounter (quantitative data), and reported their perception of whether and how their emotions impacted their clinical decision-making and behaviour (qualitative data). RESULTS:Providers generated 282 encounter descriptions. Emotions reported in angry and mental health encounters were remarkably similar, highly negative, and associated with reports of low provider engagement compared with positive encounters. Providers reported their emotions influenced their clinical decision-making and behaviour most frequently in angry encounters, followed by mental health and then positive encounters. Emotions in angry and mental health encounters were associated with increased perceptions of patient safety risks; emotions in positive encounters were associated with perceptions of higher quality care. CONCLUSIONS:Positive and negative emotions can influence clinical decision-making and impact patient safety. Findings underscore the need for (1) education and training initiatives to promote awareness of emotional influences and to consider strategies for managing these influences, and (2) a comprehensive research agenda to facilitate discovery of evidence-based interventions to mitigate emotion-induced patient safety risks. The current work lays the foundation for testing novel interventions.
Project description:Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II-IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included 'patient-centred care', 'quality of life' and 'shared decision making'. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations.
Project description:The Education Thérapeutique des patients Insuffisants Cardiaques (ETIC; Therapeutic Education for Patients with Cardiac Failure) trial aimed to determine whether a pragmatic education intervention in general practice could improve the quality of life of patients with chronic heart failure (CHF) compared with routine care.This cluster randomised controlled clinical trial included 241 patients with CHF attending 54 general practitioners (GPs) in France and involved 19 months of follow-up. The GPs in the Intervention Group were trained during a 2-day interactive workshop to provide a patient education programme. The mean age of the patients was 74 years (±10.5), 62 % were men and their mean left-ventricular ejection fraction was 49.3 % (± 14.3). At the end of the follow-up period, the mean Minnesota Living with Heart Failure Questionnaire scores in the Intervention and Control Groups were 33.4 (± 22.1) versus 27.2 (± 23.3; P?=?0.74, intra-cluster coefficient [ICC]?=?0.11). At the end of the follow-up period, the 36-Item Short Form Health Survey (mental health and physical health) scores in the Intervention and Control Groups were 58 (± 22.1) versus 58.7 (± 23.9; P?=?0.58, ICC?=?0.01) and 52.8 (± 23.8) versus 51.6 (± 25.5; P?=?0.57, ICC?=?0.01), respectively.Patient education delivered by GPs to elderly patients with stable heart failure in the ETIC programme did not achieve an improvement in their quality of life compared with routine care. Further research on improving the quality of life and clinical outcomes of elderly patients with CHF in primary care is necessary.The Education Thérapeutique des patients Insuffisants Cardiaques (ETIC; Therapeutic Education for Patients with Cardiac Failure) trial is a cluster randomised controlled trial registered with ClinicalTrials.gov (NCT01065142 ) and the French Drug Agency (Agence Nationale de Sécurité du Médicament et des Produits de Santé;2009-A01142-55).
Project description:<h4>Background</h4>Patients' participation in decision making regarding their treatment is defined in ethical, legal and human rights standards in the provision of care that concerns health providers and the entire community. This study was conducted to document experiences of patients and health care providers on shared decision making.<h4>Methods</h4>This study employed a phenomenological study design using in-depth interview technique. Study participants were diabetic patients visiting the clinic and healthcare providers working at Muhimbili National Hospital. Data was collected using the semi-structured interview guide with open-ended questions using an audio digital recorder. Content analysis method was used during analysis whereby categories were reached through the process of coding assisted by Nvivo 12 software.<h4>Results</h4>Participants in this study expressed the role of shared decision-making in the care of patients with diabetes, with report of engagement of patients by health care providers in making treatment decisions. Participants reported no use of decision-making aids; however, health education tools were reported by participants to be used for educating patients. Limited time, patient beliefs and literacy were documented as barriers of effective engagement of patients in decision making by their healthcare providers.<h4>Conclusion</h4>Engagement of patients in decision-making was noted in this study as experienced by participants of this study. Time, patient beliefs and patient literacy were documented as barriers for patients engagement, therefore diabetic clinic at Muhimbili National Hospital need to devise mechanisms for ensuring patients involvement in treatment decisions.
Project description:Improving health outcomes relies on patients' full engagement in prevention, decision-making, and self-management activities. Health literacy, or people's ability to obtain, process, communicate, and understand basic health information and services, is essential to those actions. Yet relatively few Americans are proficient in understanding and acting on available health information. We propose a Health Literate Care Model that would weave health literacy strategies into the widely adopted Care Model (formerly known as the Chronic Care Model). Our model calls for first approaching all patients with the assumption that they are at risk of not understanding their health conditions or how to deal with them, and then subsequently confirming and ensuring patients' understanding. For health care organizations adopting our model, health literacy would then become an organizational value infused into all aspects of planning and operations, including self-management support, delivery system design, shared decision-making support, clinical information systems to track and plan patient care, and helping patients access community resources. We also propose a measurement framework to track the impact of the new Health Literate Care Model on patient outcomes and quality of care.