Methods used to account for caregivers' sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review.

Background: Interest in the financial burden of informal caregivers has been growing. Unfortunately, it remains unclear which method(s) should be used when quantifying this burden. Purpose: We conducted a scoping review aimed at identifying which methods have been used to conduct such work and quantified their performance. We were also interested in examining how sex and gender considerations were considered within selected studies. Data Sources: Using a standardized approach, we identified studies published between 2012 and 2022 that aimed to document the financial burden of caregivers to child and adolescent patients. Our search strategy was applied to the MEDLINE, Embase, CINHAL, and Academic Search Premier databases. Study Selection: Manuscript selection was performed by pairs of reviewers. Data Extraction: Data extraction was performed by one reviewer with a second reviewer performing quality control. Results were reported using a narrative approach. Data Synthesis: We identified 9801 unique citations, of which 200 were included in our review. Selected studies covered various disease area (eg, infection/parasitic diseases [n = 31, 16%]) and included quantitative (n = 180, 90%), qualitative (n = 4, 2%) and mixed study designs (n = 16, 8%). Most studies (n = 182, 91%) used questionnaires/surveys, either alone or in combination with other methods, to assess caregivers' financial burden. Less than half (n = 93, 47%) of studies reported on caregivers' sex and none reported on their gender. Conclusion: We conducted an unrestricted review of published studies examining caregiver's financial burden which allowed us to identify general methodological trends observed in this literature. We believe this work may help improve future studies focusing on this important issue.

Does the duration of ambulatory consultations affect the quality of healthcare? A systematic review.

BACKGROUND: The objective is to examine and synthesise the best available experimental evidence about the effect of ambulatory consultation duration on quality of healthcare. METHODS: We included experimental studies manipulating the length of outpatient clinical encounters between adult patients and clinicians (ie, therapists, pharmacists, nurses, physicians) to determine their effect on quality of care (ie, effectiveness, efficiency, timeliness, safety, equity, patient-centredness and patient satisfaction). INFORMATION SOURCES: Using controlled vocabulary and keywords, without restriction by language or year of publication, we searched MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials and Database of Systematic Reviews and Scopus from inception until 15 May 2023. RISK OF BIAS: Cochrane Risk of Bias instrument. DATA SYNTHESIS: Narrative synthesis. RESULTS: 11 publications of 10 studies explored the relationship between encounter duration and quality. Most took place in the UK's general practice over two decades ago. Study findings based on very sparse and outdated evidence-which suggested that longer consultations improved indicators of patient-centred care, education about prevention and clinical referrals; and that consultation duration was inconsistently related to patient satisfaction and clinical outcomes-warrant low confidence due to limited protections against bias and indirect applicability to current practice. CONCLUSION: Experimental evidence for a minimal or optimal duration of an outpatient consultation is sparse and outdated. To develop evidence-based policies and practices about encounter length, randomised trials of different consultation lengths-in person and virtually, and with electronic health records-are needed. TRIAL REGISTRATION NUMBER: OSF Registration DOI:10.17605/OSF.IO/EUDK8.

Six Externally Validated Prognostic Models Have Potential Clinical Value to Predict Patient Health Outcomes in the Rehabilitation of Musculoskeletal Conditions: A Systematic Review.

OBJECTIVE: The purpose of this systematic review was to identify and appraise externally validated prognostic models to predict a patient's health outcomes relevant to physical rehabilitation of musculoskeletal (MSK) conditions. METHODS: We systematically reviewed 8 databases and reported our findings according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis 2020. An information specialist designed a search strategy to identify externally validated prognostic models for MSK conditions. Paired reviewers independently screened the title, abstract, and full text and conducted data extraction. We extracted characteristics of included studies (eg, country and study design), prognostic models (eg, performance measures and type of model) and predicted clinical outcomes (eg, pain and disability). We assessed the risk of bias and concerns of applicability using the prediction model risk of bias assessment tool. We proposed and used a 5-step method to determine which prognostic models were clinically valuable. RESULTS: We found 4896 citations, read 300 full-text articles, and included 46 papers (37 distinct models). Prognostic models were externally validated for the spine, upper limb, lower limb conditions, and MSK trauma, injuries, and pain. All studies presented a high risk of bias. Half of the models showed low concerns for applicability. Reporting of calibration and discrimination performance measures was often lacking. We found 6 externally validated models with adequate measures, which could be deemed clinically valuable [ie, (1) STart Back Screening Tool, (2) Wallis Occupational Rehabilitation RisK model, (3) Da Silva model, (4) PICKUP model, (5) Schellingerhout rule, and (6) Keene model]. Despite having a high risk of bias, which is mostly explained by the very conservative properties of the PROBAST tool, the 6 models remain clinically relevant. CONCLUSION: We found 6 externally validated prognostic models developed to predict patients' health outcomes that were clinically relevant to the physical rehabilitation of MSK conditions. IMPACT: Our results provide clinicians with externally validated prognostic models to help them better predict patients' clinical outcomes and facilitate personalized treatment plans. Incorporating clinically valuable prognostic models could inherently improve the value of care provided by physical therapists.

Decisional needs assessment for patient-centred pain care in Canada: the DECIDE-PAIN study protocol.

INTRODUCTION: The 2021 Action Plan for Pain from the Canadian Pain Task Force advocates for patient-centred pain care at all levels of healthcare across provinces. Shared decision-making is the crux of patient-centred care. Implementing the action plan will require innovative shared decision-making interventions, specifically following the disruption of chronic pain care during the COVID-19 pandemic. The first step in this endeavour is to assess current decisional needs (ie, decisions most important to them) of Canadians with chronic pain across their care pathways. METHODS AND ANALYSIS: DesignGrounded in patient-oriented research approaches, we will perform an online population-based survey across the ten Canadian provinces. We will report methods and data following the CROSS reporting guidelines.SamplingThe Léger Marketing company will administer the online population-based survey to its representative panel of 500 000 Canadians to recruit 1646 adults (age ≥18 years old) with chronic pain according to the definition by the International Association for the Study of Pain (eg, pain ≥12 weeks). ContentBased on the Ottawa Decision Support Framework, the self-administered survey has been codesigned with patients and contain six core domains: (1) healthcare services, consultation and postpandemic needs, (2) difficult decisions experienced, (3) decisional conflict, (4) decisional regret, (5) decisional needs and (6) sociodemographic characteristics. We will use several strategies such as random sampling to improve survey quality. AnalysisWe will perform descriptive statistical analysis. We will identify factors associated with clinically significant decisional conflict and decision regret using multivariate analyses. ETHICS AND DISSEMINATION: Ethics was approved by the Research Ethics Board at the Research Centre of the Centre Hospitalier Universitaire de Sherbrooke (project #2022-4645). We will codesign knowledge mobilisation products with research patient partners (eg, graphical summaries and videos). Results will be disseminated via peer-reviewed journals and national and international conferences to inform the development of innovative shared decision-making interventions for Canadians with chronic pain.

A Quality Assessment of Goals of Care Forms in a Sample of Older Patients in Various Care Settings in Quebec, Canada.

OBJECTIVE:  The objective of this study is to assess the completion and content of the Goals of Care (GOC) forms in three care settings in the province of Quebec, Canada. METHODS: This is a retrospective, cross-sectional, mixed methods analysis of data extracted from the charts and GOC forms of patients aged over 65 who received services during the year 2018 in one of the three following care settings: (i) long-term care facility, (ii) acute care hospital, and (iii) home support services of a regional healthcare and social services center. The completion of the GOC form includes six essential sections. If one or more of the sections were not fulfilled, we considered the form incomplete. We used descriptive analysis to look at the information in the six sections and a thematic analysis to assess the information in an open-ended section. RESULTS: We audited 589 charts, of which 67% contained a GOC form and only 96 (16%) a completed one. The most popular goal of care was ensuring comfort as a priority over prolonging life, selected on 40% of the forms. The majority of the included patients (89%) did not want cardiopulmonary resuscitation (CPR) to be attempted in the case of cardiac arrest. There was no indication of the use of advance medical directives, and scarce indication of the use of former GOC forms (18%) and living wills (2%) in completing the forms. Comments were included in 65% of the open-ended sections. The most frequent themes related to the use or non-use of interventions and to potential transfers to the hospital or to an intensive care unit. We found that the open-ended section was used on 24 forms to specify a different goal of care applicable in the event of further health deterioration. DISCUSSION AND CONCLUSIONS: A significant proportion of charts (84%) did not contain a completed GOC form; key aspects of advance care planning were rarely considered in establishing the patient's goal of care, and the form itself lacked utility given the frequency and nature of qualitative comments. As a final product of serious illness communication and decision-making, our findings suggest that there are significant quality issues, that patients are at risk of intensification of care at the end of life, and that more needs to be done to improve serious illness decision-making and documentation.

Using Shared Decision-Making Tools and Patient-Clinician Conversations About Costs.

OBJECTIVE: To determine how shared decision-making (SDM) tools used during clinical encounters that raise cost as an issue impact the incidence of cost conversations between patients and clinicians. PATIENTS AND METHODS: A randomly selected set of 220 video recordings of clinical encounters were analyzed. Videos were obtained from eight practice-based randomized clinical trials and one quasi-randomized clinical trial (pre- and post-) comparing care with and without SDM tools. The secondary analysis took place in 2018 from trials ran between 2007 and 2015. RESULTS: Most patient participants were white (85%), educated (38% completed college), middle-aged (mean age 56 years), and female (61%). There were 105 encounters with and 115 without the SDM tool. Encounters with SDM tools were more likely to include both general cost conversations (62% vs 36%, odds ratio [OR]: 9.6; 95% CI: 4 to 26) as well as conversations on medication costs specifically (89% vs 51%, P=.01). However, clinicians using SDM tools were less likely to address cost issues during the encounter (37% vs 51%, P=.04). Encounters with patients with less than a college degree were also associated with a higher incidence of cost conversations. CONCLUSION: Using SDM tools that raise cost as an issue increased the occurrence of cost conversations but was less likely to address cost issues or offer potential solutions to patients' cost concerns. This result suggests that SDM tools used during the consultation can trigger cost conversations but are insufficient to support them.

Impact of a Shared Decision Making Intervention on Health Care Utilization: A Secondary Analysis of the Chest Pain Choice Multicenter Randomized Trial.

BACKGROUND: Patients at low risk for acute coronary syndrome are frequently admitted for observation and cardiac testing, resulting in substantial burden and cost to the patient and the health care system. OBJECTIVES: The purpose of this investigation was to measure the effect of the Chest Pain Choice (CPC) decision aid on overall health care utilization as well as utilization of specific services both during the index emergency department (ED) visit and in the subsequent 45 days. METHODS: This was a planned secondary analysis of data from a pragmatic multicenter randomized trial of shared decision making in adults presenting to the ED with chest pain who were being considered for observation unit admission for cardiac stress testing or coronary computed tomography angiography. The trial compared an intervention group engaged in shared decision making facilitated by the CPC decision aid to a control group receiving usual care. Hospital-level billing data were used to measure utilization for the index ED visit and during the following 45 days. Patients in both groups also were asked to keep a diary recording health care utilization over the same 45-day period. Outcomes assessed included length of time in the ED and observation, ED visits, office visits, hospitalizations, testing, imaging, and procedures. RESULTS: Of the 898 patients included in the original trial, we were able to contact 834 (92.9%) patients for 45-day health care diary review. There was no difference in patient-reported health care utilization between the study arms. Hospital-level billing data were obtained for all 898 (100%) patients. During the initial ED visit the length of stay (LOS) was similar, and there was no difference in the frequency of observation unit admission between study arms. However, the mean observation unit LOS was 95 minutes (95% confidence interval [CI] = 40.8-149.8) shorter in the CPC arm and the mean number of tests was lower in the CPC arm (decrease in 19.4 imaging studies per 100 patients, 95% CI = 15.5-23.3). When evaluating the entire encounter and follow-up period, the intervention arm underwent fewer tests (decrease in 125.6 tests per 100 patients, 95% CI = 29.3-221.6). More specifically, there were fewer advanced cardiac imaging tests completed (25.8 fewer per 100 patients, 95% CI = 3.74-47.9) in the intervention arm. CONCLUSIONS: Shared decision making in low-risk chest pain can lead to decreased diagnostic testing without worsening outcomes measured over 45 days.

Impact of sociodemographic patient characteristics on the efficacy of decision AIDS: a patient-level meta-analysis of 7 randomized trials.

BACKGROUND: Decision aids (DAs) increase patient knowledge, reduce decisional conflict, and promote shared decision making (SDM). The extent to which they do so across diverse sociodemographic patient groups is unknown. METHODS AND RESULTS: We conducted a patient-level meta-analysis of 7 randomized trials of DA versus usual care comprising 771 encounters between patients and clinicians discussing treatment options for chest pain, myocardial infarction, diabetes mellitus, and osteoporosis. Using a random effects model, we examined the impact of sociodemographic patient characteristics (age, sex, education, income, and insurance status) on the outcomes of knowledge transfer, decisional conflict, and patient involvement in SDM. Because of small numbers of people of color in the study population, we were not powered to investigate the role of race. Most patients were aged ≥65 years (61%), white (94%), and women (59%); two thirds had greater than a high school education. Compared with usual care, DA patients gained knowledge, were more likely to know their risk, and had less decisional conflict along with greater involvement in SDM. These gains were largely consistent across sociodemographic patient groups, with DAs demonstrating similar efficacy when used with vulnerable patients such as the elderly and those with less income and less formal education. Differences in efficacy were found only in knowledge of risk in 1 subgroup, with greater efficacy among those with higher education (35% versus 18%; P=0.02). CONCLUSIONS: In this patient-level meta-analysis of 7 randomized trials, DAs were efficacious across diverse sociodemographic groups as measured by knowledge transfer, decisional conflict, and patient involvement in SDM. To the extent that DAs increase patient knowledge and participation in SDM, they have potential to impact health disparities related to these factors.

Core competencies for shared decision making training programs: insights from an international, interdisciplinary working group.

Shared decision making is now making inroads in health care professionals' continuing education curriculum, but there is no consensus on what core competencies are required by clinicians for effectively involving patients in health-related decisions. Ready-made programs for training clinicians in shared decision making are in high demand, but existing programs vary widely in their theoretical foundations, length, and content. An international, interdisciplinary group of 25 individuals met in 2012 to discuss theoretical approaches to making health-related decisions, compare notes on existing programs, take stock of stakeholders concerns, and deliberate on core competencies. This article summarizes the results of those discussions. Some participants believed that existing models already provide a sufficient conceptual basis for developing and implementing shared decision making competency-based training programs on a wide scale. Others argued that this would be premature as there is still no consensus on the definition of shared decision making or sufficient evidence to recommend specific competencies for implementing shared decision making. However, all participants agreed that there were 2 broad types of competencies that clinicians need for implementing shared decision making: relational competencies and risk communication competencies. Further multidisciplinary research could broaden and deepen our understanding of core competencies for shared decision making training.

Women's decision making about the use of natural health products at menopause: a needs assessment and patient decision aid.

OBJECTIVE: To identify the decision-making needs of women about the use of natural health products (NHP) at menopause and to develop a decision aid responsive to their needs. DESIGN: A qualitative study using focus groups, key informant interviews and group consultation. Content analysis was guided by the Ottawa Decision Support Framework. METHODS: Six focus groups with menopausal women aged 45 to 64 (n = 40) and key informant interviews (n = 15; physicians, nurses, women' s advocacy group, NHP stores owners, pharmacists, policy makers) were conducted in two Canadian cities. Two groups of menopausal women (n = 11) were consulted to obtain feedback on the acceptability of the new patient decision aid. RESULTS: The most common difficult decisions identified by women were: whether or not to take NHP; which NHP to choose; and whether or not to take anything for menopausal symptoms. In addition, key informants identified the challenge of choosing between hormone therapy and NHP for menopausal symptoms. The main sources of difficulty in making these decisions were the following: (1) inadequate knowledge and unrealistic expectations associated with NHP; (2) closed mindedness of physicians to discussion about NHP; (3) conflicting opinions of others; (4) inadequate resources to support NHP decision-making (e.g., information, finances, time); and (5) menopausal symptoms interfering with decision-making (e.g., lack of sleep due to hot flashes). To facilitate decision making, participants suggested the need for information about available choices, tighter regulation of NHP by the government, and access to health professionals conversant in NHP and medical options. The patient decision aid was developed according to the International Patient Decision Aid Standards and based on women' s identified needs. Women described the aid as easy to understand and useful for considering the decisions about NHP. CONCLUSIONS: Middle-age women reported difficulty when facing decisions about the use of NHP. Many sources of difficulty could be addressed in the patient decision aid. Subsequent studies should evaluate the effect of this decision aid on the decision-making process of women.