Dataset Information

Development of a Caregiver-Reported Experience Measure for Pediatric Hospital-to-Home Transitions.

ABSTRACT: OBJECTIVE:To develop and test a caregiver-reported experience measure for pediatric hospital-to-home transitions. DATA SOURCES/STUDY SETTING:Primary data were collected between 07/2014 and 05/2015 from caregivers within 2-8 weeks of their child's discharge from a tertiary care children's hospital. STUDY DESIGN/DATA COLLECTION:We used a step-wise approach to developing the measure that included drafting de novo survey items based on caregiver interviews (n = 18), pretesting items using cognitive interviews (n = 18), and pilot testing revised items among an independent sample of caregivers (n = 500). Item reduction statistics and confirmatory factor analysis (CFA) were performed on a test sample of the pilot data to refine the measure, followed by CFA on the validation sample to test the final measure model fit. PRINCIPAL FINDINGS:Of 46 initial survey items, 19 were removed after pretesting and 19 were removed after conducting item statistics and CFA. This resulted in an eight-item measure with two domains: transition preparation (four items) and transition support (four items). Survey items assess the quality of discharge instructions, access to needed support and resources, care coordination, and follow-up care. Practical fit indices demonstrated an acceptable model fit: ?2 = 28.3 (df = 19); root-mean-square error of approximation = 0.04; comparative fit index = 0.99; and Tucker-Lewis index = 0.98. CONCLUSIONS:An eight-item caregiver-reported experience measure to evaluate hospital-to-home transition outcomes in pediatric populations demonstrated acceptable content validity and psychometric properties.

SUBMITTER: Desai AD

PROVIDER: S-EPMC6056575 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Development of a Caregiver-Reported Experience Measure for Pediatric Hospital-to-Home Transitions.

Desai Arti D AD Jacob-Files Elizabeth A EA Lowry Sarah J SJ Opel Douglas J DJ Mangione-Smith Rita R Britto Maria T MT Howard Waylon J WJ

Health services research 20180508

<h4>Objective</h4>To develop and test a caregiver-reported experience measure for pediatric hospital-to-home transitions.<h4>Data sources/study setting</h4>Primary data were collected between 07/2014 and 05/2015 from caregivers within 2-8 weeks of their child's discharge from a tertiary care children's hospital.<h4>Study design/data collection</h4>We used a step-wise approach to developing the measure that included drafting de novo survey items based on caregiver interviews (n = 18), pretesting ...[more]

PMID: 29740810

Similar Datasets

Project description:BackgroundThe purpose of this study was to develop and administer surveys that assess patient and family caregiver experiences with care transitions and examine the psychometric properties of the surveys. The surveys were designed to ask about 1) the transitional care services that matter most to patients and their caregivers and 2) care outcomes, including the overall quality of transitional care they received, patient self-reported health, and caregiver effort/stress.MethodsSurvey items were developed based on a review of the literature, existing surveys, focus groups, site visits, stakeholder and expert input, and patient and caregiver cognitive interviews. We administered mail surveys with telephone follow up to patients recently discharged from 43 U.S. hospitals. Patients identified the caregivers who helped them during their hospital stay (Time 1 caregiver) and when they were home (Time 2 caregiver). Time 1 and Time 2 caregivers were surveyed by telephone only. The psychometric properties of the survey items and outcome composite measures were examined for each of the three surveys. Items that performed poorly across multiple analyses, including those with low variability and/or a high missing data, were dropped except when they were conceptually important.ResultsThe analysis datasets included responses from 9282 patients, 1245 Time 1 caregivers and 1749 Time 2 caregivers. The construct validity of the three proposed outcome composite measures-Overall Quality of Transitional Care (patient and caregiver surveys), Patient Overall Health (patient survey) and Caregiver Effort/Stress (caregiver surveys) -was supported by acceptable exploratory factor analysis results and acceptable internal consistency reliability. Site-level reliability was acceptable for the two patient outcome composite measures, but was low for Caregiver Effort/Stress (< 0.70). In all surveys, the Overall Quality of Transitional Care outcome composite measure was significantly correlated with other outcome composite measures and most of the single-item measures.ConclusionsOverall, the final patient and caregiver surveys are psychometrically sound and can be used by health systems, hospitals, and researchers to assess the quality of care transitions and related outcomes. Results from these surveys can be used to improve care transitions, focusing on what matters most to patients and their family caregivers.

Project description:BACKGROUND:Evolving regulatory guidelines recommend routine assessment of the acceptability of pediatric oral medicines throughout clinical development processes. However, such assessment is problematic owing to a lack of standard methods or criteria that define acceptability for children and their caregivers. This research aimed to identify the attributes of acceptability for targeted oral formulation types that are important to children, and to develop content-valid patient- and caregiver-reported outcome acceptability measures for use in the context of clinical drug development. METHODS:A concept-focused literature review and two advisory panel meetings involving researchers, clinicians, and measurement scientists were conducted to identify acceptability attributes that may be relevant to children taking targeted oral medicine formulations. The Pediatric Oral Medicines Acceptability Questionnaires (P-OMAQs), including patient (P-OMAQ-P) and caregiver (P-OMAQ-C) versions, were drafted to assess these attributes. Qualitative concept elicitation (CE) and cognitive debriefing (CD) patient and caregiver interviews were conducted to confirm key acceptability attribute concepts for measurement and to evaluate patient and caregiver ability to understand and respond to the questions. RESULTS:A full-text review of 40 articles identified 24 acceptability attributes that were categorized into 10 overarching domains and organized into a preliminary conceptual model. Feedback from the advisory panel refined the preliminary model. In total, 14 attributes were reported during the CE phase of the interviews (n?=?23 pediatric patients, n?=?13 caregivers); six attributes were included in the final model. The draft P-OMAQ was refined over four waves of CD interviews (n?=?31 pediatric patients, n?=?48 caregivers). The final version of the P-OMAQ-P is a 12-item questionnaire designed for young people aged 8-17?years. The P-OMAQ-C is a 19-item questionnaire designed for adult caregivers of young people aged 6?months to 17?years. There are two versions of each questionnaire: one with a 24-h recall period and one with a 7-day recall period. All items are answered on a 5-point numerical rating scale. CONCLUSIONS:This research supports the content validity of the patient and caregiver versions of the P-OMAQ. Both questionnaires appropriately assess the acceptability of oral medicine formulations from the perspective of pediatric patients and their caregivers.

Project description:IntroductionMinority-serving hospitals (MSHs) need evidence-based strategies tailored to the populations they serve to improve patient-centered outcomes after hospitalization.MethodsWe conducted a pragmatic randomized clinical trial (RCT) from October 2014 to January 2017 at a MSH comparing the effectiveness of a stakeholder-supported Navigator intervention vs. Usual care on post-hospital patient experience, outcomes, and healthcare utilization. Community health workers and peer coaches delivered the intervention which included (1) in-hospital visits to assess barriers to health/healthcare and to develop a personalized Discharge Patient Education Tool (DPET); (2) a home visit to review the DPET; and (3) telephone-based peer coaching. The co-primary outcomes were between-group comparisons of 30-day changes in Patient-Reported Outcomes Measurement Information System (PROMIS) measures of anxiety and informational support (minimum important difference is 2 to 5 units change); a p-value <0.025 was considered significant using intention-to-treat analysis. Secondary outcomes included death, ED visits, or readmissions and measures of emotional, social, and physical health at 30 and 60 days.ResultsWe enrolled 1029 adults hospitalized with heart failure (28%), pneumonia (22%), MI (10%), COPD (11%), or sickle cell disease (29%). Over 80% were non-Hispanic Black. Overall, there were no significant between-group differences in the 30-day change in anxiety (adjusted difference: -1.6, 97.5% CI -3.3 to 0.1, p=0.03), informational support (adjusted difference: -0.01, 97.5% CI -2.0 to 1.9, p=0.99), or any secondary outcomes. Exploratory analyses suggested the Navigator intervention improved anxiety among participants with COPD, a primary care provider, a hospitalization in the past 12 months, or higher baseline anxiety; among participants without health insurance, the intervention improved informational support (all p-values <0.05).ConclusionsIn this pragmatic RCT at a MSH, the Navigator intervention did not improve post-hospital anxiety, informational support, or other outcomes compared to Usual care. Benefits observed in participant subgroups should be confirmed in future studies.Trial registrationClinicaltrials.gov identifier: NCT02114515.

Project description:ImportanceUnderstanding the patient's perspective of their care transition process from hospital or skilled nursing facility (SNF) to home may highlight gaps in care and inform system improvements.ObjectiveTo gather data about patients' care transition experiences and factors associated with follow-up appointment completion.Design, setting, and participantsA survey tool was developed with input from patient advisors and organizations participating in a collaborative quality initiative. Seventeen hospitals, 12 practitioner organizations, and 6 SNFs in Michigan collaborated to identify shared patients who were aged 18 years and older, had a working telephone number, recently returned home or to an assisted living facility with a diagnosis of congestive heart failure or chronic obstructive pulmonary disease, or after an SNF stay. Using consecutive sampling, interviewers collected 5 telephone surveys per month. From October 2018 to December 2019, patients or caregivers were surveyed via telephone 8 to 12 days after discharge from a hospital or SNF. Data were analyzed from March 2020 to January 2022.ExposureCare transition experiences.Main outcomes and measuresThe primary outcome was to identify patient-perceived gaps during care transition experiences, including postdischarge follow-up.ResultsOn the basis of pilot data, the response rate was estimated at 34%, yielding 1257 surveys. Of 1257 survey respondents (mean [SD] age, 70 [12.94] years for 968 patients for whom age data was available), 654 (52%) were female; 829 (74%) were White, 250 (22%) were Black or African American, and 40 (4%) were another race. Eleven percent of patients reported not receiving a telephone number to call for postdischarge questions. Nearly 80% of patients (977 patients) received a follow-up telephone call, and most found it valuable. Twenty percent of patients (255 patients) reported at least 1 social determinant of health issue. Lack of transportation was associated with reduced likelihood of completing a follow-up visit, decreasing the odds of completing a follow-up by nearly 70% (odds ratio [OR], 0.31; 95% CI, 0.18-0.53; P < .001). Compared with other patient groups, Black patients were less likely to report completing a postdischarge follow-up visit (OR, 0.49; 95% CI, 0.36-0.67; P < .001) or to receive prescribed medical equipment (OR, 4.23; 95% CI, 1.30-13.83; P = .02).Conclusions and relevanceAn examination of patient discharge experiences from a hospital or SNF identified inconsistencies in care transition processes, social determinants of health issues needing to be addressed after discharge, and racial disparities between patients who attend follow-up appointments. Physicians should be aware of these findings and their consequences for patient experiences.

Project description:BackgroundRespiratory syncytial virus (RSV) causes significant morbidity and mortality in older adults. Despite a number of RSV vaccine candidates in clinical trials, there are no existing disease-specific, self-reported measures that assess the symptoms and severity of RSV infection from the perspective of adult patients with acute RSV. The objective of this study was to describe the initial conceptualization and development of the RSV Infection, Intensity and Impact Questionnaire (RSV-iiiQ), a new patient-reported outcome measure.MethodsA targeted review of the literature identified relevant existing measures, symptoms, and impacts of RSV. A draft version of the RSV-iiiQ was developed based on the Influenza Intensity and Impact Questionnaire (Flu-iiQ) with expert input. Qualitative interviews (N = 20) were conducted with participants to optimize the RSV-iiiQ conceptual model and confirm the content validity of the RSV-iiiQ. Interviews included concept elicitation and a cognitive debriefing assessment. A draft conceptual framework was developed, and the electronic clinical outcome assessment was piloted. All steps of instrument development followed Food and Drug Administration guidance for patient-reported outcomes.ResultsIn-depth concept elicitation interviews followed by cognitive debriefings demonstrated that the content of the items was comprehensive, covered the breadth of RSV symptoms and impacts, and was relevant to the experiences of individuals with RSV. Both the paper and electronic versions of the RSV-iiiQ were easily completed. Minor refinements were made to some items based on participant feedback, and the draft conceptual framework was refined.ConclusionsThe RSV-iiiQ was developed for use in clinical trials to measure the symptom intensity and impact of acute RSV infection from the perspective of adult patients. The tool was developed in accordance with current regulatory guidance and is useful to support patient-focused drug development.

Project description:BACKGROUND:Improving the quality of care for patients who return home after a hospital stay is an international priority; however, few jurisdictions have engaged broadly with patients and caregivers to understand what most affects their experience transitioning home. We performed Ontario-wide group concept mapping, beginning with a brainstorming phase, to understand patient and caregiver priorities in the transition. METHODS:We used group concept mapping to engage patients and caregivers who had lived experience transitioning from hospital to home in Ontario in the previous 3 years. We report on the first phase, brainstorming, conducted over 10 weeks beginning Jan. 11, 2018 via an online survey or facilitated group discussion. Participants responded to a single focal prompt: "When leaving the hospital for home, some thing(s) that affected the experience were: ____." The study team identified recurrent concepts and overarching themes. Patients and caregivers informed the study design, recruitment and data interpretation. RESULTS:In all, 665 people (263 patients [39.5%], 352 caregivers [52.9%] and 50 people who were both patient and caregiver [7.5%]) participated in brainstorming online, and 71 people participated in 1 of 8 group discussions. Participants identified 6 key areas affecting their experience of transition from hospital to home: home and community care, the discharge process, medical follow-up after discharge, medications, patient and caregiver education, and the kindness and caring of the health care team in hospital. Most notable were challenges with the timeliness, sufficiency, reliability and consistency of publicly funded home care services. INTERPRETATION:Patients and caregivers from across Ontario noted a range of issues affecting their experience transitioning from hospital to home, particularly the quality and sufficiency of publicly funded home care. Our findings will be used to inform a provincial quality standard on the transition from hospital to home.

Dataset Information

Development of a Caregiver-Reported Experience Measure for Pediatric Hospital-to-Home Transitions.

Publications

Development of a Caregiver-Reported Experience Measure for Pediatric Hospital-to-Home Transitions.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets