Patient reported outcomes - experiences with implementation in a University Health Care setting.
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ABSTRACT: Aim
Patient-reported outcomes (PROs) have traditionally been implemented through a manual process of paper and pencil with little standardization throughout a Healthcare System. Each practice has asked patients specific questions to understand the patient's health as it pertains to their specialty. These data were rarely shared and there has not been a comparison of patient's health across different specialty domains. We sought to leverage interoperable electronic systems to provide a standardization of PRO assessments across sites of care.Methods
University of Utah Health is comprised of four hospitals, 12 community clinics, over 400,000 unique annual patients, and more than 5000 providers. The enterprise wide implementation of PROs started in November of 2015. Patients can complete an assessment at home via email, or within the clinic on a tablet. Each specialty has the opportunity to add additional specialty-specific instruments. We customized the interval with which the patient answers the assessments based on specialty preference in order to minimize patient burden, while maximizing relevant data for clinicians.Results
Barriers and facilitators were identified in three phases: Pre-implementation, Implementation, and Post-implementation. Each phase was further broken down into technical challenges, content inclusion and exclusion, and organizational strategy. These phases are unique and require collaboration between several groups throughout the organization with support from executive leadership.Discussion
We are deploying system-wide standard and customized PRO collection with the goals of providing better patient care, improving physician-patient communication, and ultimately improving the value of the care given. Standardized assessment provides any clinician with information to quickly evaluate the overall, physical and mental health of a patient. This information is available real time to aid in patient communication for the clinician.
SUBMITTER: Biber J
PROVIDER: S-EPMC6097980 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundTo investigate multiple sclerosis (MS) patients' satisfaction with out-patient follow-up in a general neurological hospital department. Patients with definite MS living in Vest-Agder county, Norway were invited to answer a questionnaire comprising one question regarding overall satisfaction, and 24 questions regarding demographics, disease characteristics, and experiences with different aspects of the health care services.ResultsOut of 330 invited patients, 159 responded (48%). Mean overall satisfaction with health care was 3.5 (SD = 1.03) on a 1-5 Likert scale (1 = not at all, 5 = to a very large extent). The best sub scores were given on confidence in the physician's competence (mean = 4.01), the physician speaks in an understandable way (mean = 4.07), expectation of good treatment (mean = 3.72), and perception of being submitted to wrong treatment (mean = 1.5). The worst scores were given on satisfaction with frequency of outpatient appointments (mean = 2.89) and delay of outpatient appointments (mean = 3.07). Four factors were associated with high overall satisfaction; receiving the disease modifying drug natalizumab (B = 0.549, p = 0.004), satisfaction with frequency of outpatient appointments (B = 0.242, p < 0.001), experience that the physician facilitates talking about what the patient finds important (B = 0.218, p = 0.001), and confidence with the physician's competence (B = 0.453, p < 0.001).ConclusionThe patients were rather satisfied with the content of follow-up, and less satisfied with the structure. Regular and predictable contact with a trustworthy physician that facilitates that the patient is able to talk about what is important was associated with higher overall satisfaction.
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Project description:IntroductionThe onset of COVID-19 has caused an international upheaval of traditional in-person approaches to care delivery. Rapid system-level transitions to virtual care provision restrict the ability of healthcare professionals to evaluate care quality from the patient's perspective. This poses challenges to ensuring that patient-centered care is upheld within virtual environments. To address this, the study's objective was to review how virtual care has impacted patient experiences and outcomes during COVID-19, through the use of patient-reported experience and outcome measures (PREMs and PROMs), respectively.MethodsA systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines to evaluate patient responsiveness to virtual care during COVID-19. Using an exhaustive search strategy, relevant peer-reviewed articles published between January 2020 and 2022 were pulled from MEDLINE, CINAHL, EMBASE, and PsychInfo databases. Study quality was independently assessed by two reviewers using the Mixed Methods Appraisal Tool. A patient partner was consulted throughout the study to provide feedback and co-conduct the review.ResultsAfter removing duplicates, 6048 articles underwent title and abstract review, from which 644 studies were included in the full-text review stage. Following this, 102 articles were included in the study. Studies were published in 20 different countries, were predominantly cross-sectional, and reported on the delivery of virtual care in specialized adult outpatient settings. This review identified 29 validated PREMs and 43 PROMs. Several advantages to virtual care were identified, with patients citing greater convenience, (such as saving travel time and cost, less waiting experienced to see care providers) and increased protection from viral spread. Some studies also reported challenges patients and caregivers faced with virtual care, including feeling rushed during the virtual care appointment, lack of physical contact or examination presenting barriers, difficulty with communicating symptoms, and technology issues.ConclusionThis review provides supportive evidence of virtual care experiences during the COVID-19 pandemic from patient and caregiver perspectives. This research provides a comprehensive overview of what patient-reported measures can be used to record virtual care quality amid and following the pandemic. Further research into healthcare professionals' perspectives would offer a supportive lens toward a strong person-centered healthcare system.
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Project description:This study quantifies the association between patient reported measures (PRMs) and readmission to inform efforts to improve hospital care. A retrospective, cross-sectional study was conducted with adults who had chronic obstructive pulmonary disease (COPD) or congestive heart failure (CHF) and were admitted for acute care in a public hospital in New South Wales, Australia for any reason (n = 2394 COPD and 2476 CHF patients in 2018-2020). Patient- level survey data were linked with inpatient data for one year prior to risk-adjust outcomes and after discharge to detect all cause unplanned readmission to a public or private hospital. Ninety-day readmission rates for respondents with COPD or CHF were 17% and 19%. Crude rates for adults with COPD were highest among those who reported that hospital care and treatment helped "not at all" (28%), compared to those who responded, "to some extent" (20%) or "definitely" (15%). After accounting for patient characteristics, adults with COPD or CHF who said care and treatment didn't help at all were at twice the risk of readmission compared to those who responded that care and treatment helped "definitely" (Hazard ratio for COPD 1.97, CI: 1.17-3.32; CHF 2.07, CI 1.25-3.42). Patients who offered the most unfavourable ratings of overall care, understandable explanations, organised care, or preparedness for discharge were at a 1.5 to more than two times higher risk of readmission. Respect and dignity, effective and clear communications, and timely and coordinated care also matter. PRMs are strong predictors of readmission even after accounting for risk related to age and co-morbidities. More moderate ratings were associated with attenuation of risk, and the most positive ratings were associated with the lowest readmission rate. These results suggest that increasing each patient's positive experiences progressively reduces the risk of adults with chronic conditions returning to acute care.
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Project description:Aims: To explore patient experiences in a large-scale primary care-based, preemptive genetic testing program. Methods: Patients who received genetic results from the initiative were invited to participate in an online survey 3 weeks postresult disclosure. A 6-month follow-up survey was sent to assess changes over time. Results: The initial survey was completed by 1646 patients, with 544 completing the 6-month follow-up survey. The following outcomes were high overall: patient-reported understanding of results (cancer: 87%; cardiac: 86%); perceived utility (75%); positive emotions (relieved: 66.8%; happy: 62.0%); family result sharing (67.6%); and satisfaction (87%), although analysis by demographic factors identified groups who may benefit from additional education and emotional support. Results-related health behaviors and discussions with providers increased over time (screening procedures 6.1% to 14.2% p < 0.001; provider discussion 10.3% to 25.3%, p < 0.001), and were more likely to take place for patients with positive cancer and/or cardiac results (39.8% vs. 7.6%, p < 0.001). Forty-seven percent of patients reported insurance discrimination concerns, and most (79.4%) were not familiar with privacy and nondiscrimination laws. Concerns regarding discrimination and negative emotions decreased between the two survey time points (privacy issues 44.6% to 35.1% p < 0.001; life insurance discrimination concerns 35.5% to 29.6%, p = 0.001; anxiety 8.1% to 3.3%, p < 0.001; and uncertainty 19.8% to 12.8%, p < 0.001). These findings led to the development and integration of additional patient resources to improve program implementation. Conclusion: Our findings highlight patient experiences with and areas of need in a community-based genomic screening pilot initiative using a mixed primary care/genetics provider model to deliver precision medicine.
| S-EPMC7891215 | biostudies-literature
Project description:BACKGROUND:The successful implementation of patient-reported outcomes (PROs) in clinical routine faces many challenges, first and foremost the lack of consideration thereof in the patient care process. The aim of this study will be to first identify relevant barriers and facilitators and then design suitable implementation strategies which will be evaluated to improve the effectiveness of a PRO measure assessment in inpatient and outpatient cancer routine care. METHODS:During the preparation phase, interviews with oncological patients (N = 28) and medical staff (N = 4) as well as focus groups with medical staff (N = 18) across five different departments caring for cancer patients were conducted. On the basis of these, qualitative content analysis revealed relevant barriers and facilitators for implementation of PROs in cancer care. Subsequently, implementation strategies and a model of implementation were developed. In the study phase, implementation strategies will be evaluated based on nine different implementation outcomes in five different oncological clinics. Evaluation of the implementation process will take place during three months in each clinic and data will be conducted pre, while and post implementation of the PRO measure. Therefore a sample size of 60 participants of whom 30 staff members and 30 participants will be questioned using existing and newly developed implementation outcome evaluation instruments. DISCUSSION:Key to improving the effectiveness of PRO assessment in the time-critical clinical environment is the utilization of easy-to-use, electronic PRO questionnaires directly linked to patients' records thereby improving consideration of PROs in patient care. In order to validate the effectiveness of this implementation process further, an evaluation parallel to implementation following an observational study design with a mixed-methods approach will be conducted. This study could contribute to the development of adequate evaluation processes of implementation of PROs to foster sustainable integration of PRO measures into routine cancer care. TRIAL REGISTRATION:This study was registered at Open Science Framework (https://osf.io/y7xce/).
| S-EPMC6941251 | biostudies-literature
Project description:AimTo investigate patient experiences with pharmacogenetic (PGx) testing.MethodsPatients were offered PGx testing through a study on pharmacist-assisted delivery of PGx testing and invited to complete pre- and post-testing surveys about their experience.ResultsOf 63 patients tested, 17 completed the baseline survey (27%). Interest in testing was mostly impacted by desire to inform selection of best treatment (n = 13). Seven of 12 patients that completed the follow-up survey indicated that their provider discussed the test result with them. Five patients understood their test result very or somewhat well. All would be likely to have PGx testing again.ConclusionPatients perceived PGx testing to be useful, though more effort may be needed to improve patient-provider communication of test results.
| S-EPMC5558503 | biostudies-literature
Project description:BackgroundThere is a considerable amount of research showing an association between continuity of care and improved health outcomes. However, the methods used in most studies examine only the pattern of interactions between patients and clinicians through administrative measures of continuity. The patient experience of continuity can also be measured by using patient reported experience measures. Unlike administrative measures, these can allow elements of continuity such as the presence of information or how joined up care is between providers to be measured. Patient experienced continuity is a marker of healthcare quality in its own right. However, it is unclear if, like administrative measures, patient reported continuity is also linked to positive health outcomes.MethodsCohort and interventional studies that examined the relationship between patient reported continuity of care and a health outcome were eligible for inclusion. Medline, EMBASE, CINAHL and the Cochrane Library were searched in April 2021. Citation searching of published continuity measures was also performed. QUIP and Cochrane risk of bias tools were used to assess study quality. A box-score method was used for study synthesis.ResultsNineteen studies were eligible for inclusion. 15 studies measured continuity using a validated, multifactorial questionnaire or the continuity/co-ordination subscale of another instrument. Two studies placed patients into discrete groups of continuity based on pre-defined questions, one used a bespoke questionnaire, one calculated an administrative measure of continuity using patient reported data. Outcome measures examined were quality of life (n = 11), self-reported health status (n = 8), emergency department use or hospitalisation (n = 7), indicators of function or wellbeing (n = 6), mortality (n = 4) and physiological measures (n = 2). Analysis was limited by the relatively small number of hetrogenous studies. The majority of studies showed a link between at least one measure of continuity and one health outcome.ConclusionWhilst there is emerging evidence of a link between patient reported continuity and several outcomes, the evidence is not as strong as that for administrative measures of continuity. This may be because administrative measures record something different to patient reported measures, or that studies using patient reported measures are smaller and less able to detect smaller effects. Future research should use larger sample sizes to clarify if a link does exist and what the potential mechanisms underlying such a link could be. When measuring continuity, researchers and health system administrators should carefully consider what type of continuity measure is most appropriate.
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Project description:BackgroundUnderstanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs.MethodsIn a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a 'heart problem'. We compared the characteristics of children with more and less severe cardiac diagnoses and, through collaborative inductive content analysis, investigated the subjective experiences and coping strategies described by children in both clinical severity groups.ResultsText and/or drawings were returned by 436 children (246 boys [56%], mean age 12.1 years [SD 1.0; range 10-14]); 313 had less severe (LS) and 123 more severe (MS) cardiac diagnoses. At the most recent hospital visit, a higher proportion of the MS group were underweight (more than two standard deviations below the mean for age) or cyanosed (underweight: MS 20.0%, LS 9.9%; cyanosed: MS 26.2%, LS 3.5%). Children in the MS group described concerns about social isolation and feeling 'different', whereas children with less severe diagnoses often characterised their CHD as 'not a big thing'. Some coping strategies were common to both severity groups, including managing health information to avoid social exclusion, however only children in the LS group considered their CHD 'in the past' or experienced a sense of survivorship.ConclusionsChildren's reported experiences were not dependent on their cardiac diagnosis, although there were clear qualitative differences by clinical severity group. Children's concerns emphasised social participation and our findings imply a need to shift the clinical focus from monitoring cardiac function to optimising participation. We highlight the potential for informing and evaluating clinical practice and service provision through seeking patient-reported outcomes in paediatric care.
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Project description:Background and objectivesNew payment models resulting from the Advancing American Kidney Health initiative may create incentives for nephrologists to focus less on face-to-face in-center hemodialysis visits. This study aimed to understand whether more frequent nephrology practitioner dialysis visits improved patient experience and could help inform future policy.Design, setting, participants, & measurementsIn a cross-sectional study of patients receiving dialysis from April 1, 2015 through January 31, 2016, we linked patient records from a national kidney failure registry to patient experience data from the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems survey. We used a multivariable mixed effects linear regression model to examine the association between nephrology practitioner visit frequency and patient-reported experiences with nephrologist care.ResultsAmong 5125 US dialysis facilities, 2981 (58%) had ≥30 In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems surveys completed between April 2015 and January 2016, and 243,324 patients receiving care within these facilities had Medicare Parts A/B coverage. Face-to-face practitioner visits per month were 71% with four or more visits, 17% with two to three visits, 4% with one visit, and 8% with no visits. Each 10% absolute greater proportion of patients seen by their nephrology practitioner(s) four or more times per month was associated with a modestly but statistically significant lower score of patient experience with nephrologist care by -0.3 points (95% confidence interval, -0.5 to -0.1) and no effect on experience with other domains of dialysis care.ConclusionsIn an analysis of patient experiences at the dialysis facility level, frequent nephrology practitioner visits to facilities where patients undergo outpatient hemodialysis were not associated with better patient experiences.
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Project description:BackgroundSelf-reported substance use is more likely to be influenced by underreporting bias compared to the biological markers. Underreporting bias or validity of self-reported substance use depends on the study population and cannot be generalized to the entire population. This study aimed to compare the validity of self-reported substance use between research setting and primary health care setting from the same source population.Methods and materialsThe population in this study included from Rafsanjan Youth Cohort Study (RYCS) and from primary care health centers. The sample from RYCS is made up 607 participants, 113 (18.62%) women and 494 (81.38%) men and sample from PHC centers is made up 522 individuals including 252 (48.28%) women and 270 (51.72%) men. We compared two groups in respect of prevalence estimates based on self-reported substance use and urine test. Then for evaluating validity of self-reported substance use in both group, the results of reference standard, urine tests, were compared with the results of self-reported drug use using measures of concordance.ResultsThe prevalence of substance use based on urine test was significantly higher in both settings compared to self-reported substance use over the past 72 h. The sensitivity of self-report substance use over the past 72 h in research setting was 39.4, 20, 10% and zero for opium, methadone, cannabis and amphetamine, respectively and in primary health care setting was 50, 20.7, 12.5% and zero for opium, methadone, cannabis and amphetamine, respectively. The level of agreement between self-reported substance use over the past 72 h and urine test indicated fair and moderate agreement for opium in both research and primary health care settings, respectively and also slight agreement for methadone and cannabis in both settings were reported. There was no significant difference between the two groups in terms of self-reported substance use. For all substances, the level of agreement increased with longer recall periods. The specificity of self-report for all substances in both groups was more than 99%.ConclusionIndividuals in primary health care setting were more likely to self-reported substance use than in research setting, but setting did not have a statistically significant effect in terms of self-reported substance use. Programs that rely on self-reported substance use may not estimate the exact prevalence of substance use in both research and primary health care settings, especially for substances that have a higher social stigma. Therefore, it is recommended that self-report and biological indicators be used for more accurate evaluation in substance use studies. It is also suggested that future epidemiological studies be performed to reduce bias of social desirability and find a method providing the highest level of privacy.
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