Patient-Reported Outcomes and Experiences with Population Genetic Testing Offered Through a Primary Care Network.
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ABSTRACT:
SUBMITTER: Lemke AA
PROVIDER: S-EPMC7891215 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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.
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Project description:AimPatient-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.MethodsUniversity 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.ResultsBarriers 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.DiscussionWe 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.
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Project description:BackgroundPrimary care physician (PCP) burnout is prevalent and on the rise. Physician burnout may negatively affect patient experience of care.ObjectiveTo identify the direct impact of PCP burnout on patient experience in various domains of care.DesignA cross-sectional observational study using physician well-being (PWB) surveys collected in 2016-2017, linked to responses from patient experience of care surveys. Patient demographics and practice characteristics were derived from the electronic health record. Linked data were analyzed at the physician level.SettingA large non-profit multi-specialty ambulatory healthcare organization in northern California.ParticipantsA total of 244 physicians practicing internal medicine or family medicine who responded to the PWB survey (response rate 72%), and 30,701 completed experience surveys from patients seeing these physicians.MeasurementsBurnout was measured with a validated single-item question with a 5-point scale ranging from (1) enjoy work to (5) completely burned out and seeking help. Patient experience of patient-provider communication, access, and overall rating of provider was measured with Clinician & Group Consumer Assessment of Healthcare Providers & Systems (CG-CAHPS) survey. Patient experience scores (0-100 scale) were adjusted for age, gender, race/ethnicity, and English proficiency.ResultsPhysician burnout had a negative impact on patient-reported experience of patient-provider communication but not on access or overall rating of providers. A one-level increase in burnout was associated with 0.43 decrease in adjusted patient-provider communication experience score (P < 0.01).LimitationsData came from a single large healthcare organization. Patterns may differ for small- and mid-sized practices.ConclusionPhysician burnout adversely affects patient-provider communication in primary care visits. Efforts to improve physician work environments could have a meaningful positive impact on patient experience as well as physician well-being.
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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.
| S-EPMC10692047 | biostudies-literature
Project description:BACKGROUND:The growing movement toward more accountable care delivery and the increasing number of people with chronic illnesses underscores the need for primary care practices to engage patients in their own care. OBJECTIVE:For adult primary care practices seeing patients with diabetes and/or cardiovascular disease, we examined the relationship between selected practice characteristics, patient engagement, and patient-reported outcomes of care. DESIGN:Cross-sectional multilevel observational study of 16 randomly selected practices in two large accountable care organizations (ACOs). PARTICIPANTS:Patients with diabetes and/or cardiovascular disease (CVD) who met study eligibility criteria (n?=?4368) and received care in 2014 were randomly selected to complete a patient activation and PRO survey (51% response rate; n?=?2176). Primary care team members of the 16 practices completed surveys that assessed practice culture, relational coordination, and teamwork (86% response rate; n?=?411). MAIN MEASURES:Patient-reported outcomes included depression (PHQ-4), physical functioning (PROMIS SF12a), and social functioning (PROMIS SF8a), the Patient Assessment of Chronic Illness Care instrument (PACIC-11), and the Patient Activation Measure instrument (PAM-13). Patient-level covariates included patient age, gender, education, insurance coverage, limited English language proficiency, blood pressure, HbA1c, LDL-cholesterol, and disease comorbidity burden. For each of the 16 practices, patient-centered culture and the degree of relational coordination among team members were measured using a clinician and staff survey. The implementation of shared decision-making activities in each practice was assessed using an operational leader survey. KEY RESULTS:Having a patient-centered culture was positively associated with fewer depression symptoms (odds ratio [OR]?=?1.51; confidence interval [CI] 1.04, 2.19) and better physical function scores (OR?=?1.85; CI 1.25, 2.73). Patient activation was positively associated with fewer depression symptoms (OR?=?2.26; CI 1.79, 2.86), better physical health (OR?=?2.56; CI 2.00, 3.27), and better social health functioning (OR?=?4.12; CI 3.21, 5.29). Patient activation (PAM-13) mediated the positive association between patients' experience of chronic illness care and each of the three patient-reported outcome measures-fewer depression symptoms, better physical health, and better social health. Relational coordination and shared decision-making activities reported by practices were not significantly associated with higher patient-reported outcome scores. CONCLUSIONS:Diabetic and CVD patients who received care from ACO-affiliated practices with more developed patient-centered cultures reported lower PHQ-4 depression symptom scores and better physical functioning. Diabetic and CVD patients who were more highly activated to participate in their care reported lower PHQ-4 scores and better physical and social outcomes of care.
| S-EPMC5442008 | biostudies-literature
Project description:The scalable delivery of genomic medicine requires collaboration between genetics and non-genetics providers. Thus, it is essential to investigate and address the perceived value of and barriers to incorporating genetic testing into the clinical practice of primary care providers (PCPs). We used a mixed-methods approach of qualitative interviews and surveys to explore the experience of PCPs involved in the pilot DNA-10K population genetic testing program. Similar to previous research, PCPs reported low confidence with tasks related to ordering, interpreting and managing the results of genetic tests, and identified the need for additional education. PCPs endorsed high levels of utility for patients and their families but noted logistical challenges to incorporating genetic testing into their practice. Overall PCPs were not familiar with the United States' Genetic Information Nondiscrimination Act and they expressed high levels of concern for patient data privacy and potential insurance discrimination. This PCP feedback led to the development and implementation of several processes to improve the PCP experience with the DNA-10K program. These results contribute to the knowledge base regarding genomic implementation using a mixed provider model and may be beneficial for institutions developing similar clinical programs.
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Project description:The testing effect is when patient-reported outcomes (PRO) improve with repeated administration without intervention. The testing effect can confound interpretation of clinical trials using PROs as endpoints. This study investigated potential mechanisms. The parent study (n = 302) investigated a self-management intervention for depression. We qualitatively analyzed exit interview feedback from the 89 control group participants completing the last assessment. Participants reported several perceived benefits from control group participation including novel mechanisms (study participation was meaningful, emotional support, appreciating outreach), a possible negative testing effect and mechanisms previously identified (behavioral change).
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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.
| S-EPMC8425623 | biostudies-literature
Project description:BackgroundAn increase in the number of people presenting to emergency departments (EDs) is contributing to ED overcrowding. In the early stages of the COVID-19 pandemic, there was a significant reduction in the number of ED presentations in Australia, creating an opportunity to learn from patients' experiences of alternative management options.ObjectiveThe aim of this study is to report on the use and experience of health services by Australian adults experiencing a health issue during the COVID-19 pandemic for which they would have presented at an ED prior to the pandemic.MethodsAn online survey was conducted in May 2020. Reported health issues were categorized using an existing classification system. Data collected included demographics, care pathways, levels of concern at times of health issue and survey completion, and patient-reported experiences with care.ResultsA total of 1289 eligible respondents completed the survey. Almost 25% (309/1289) of respondents avoided an ED presentation, of which 58% (179/309) used an alternative form of health care and 42% (130/309) self-managed. Respondents making face-to-face or telehealth appointments with their general practitioner (GP) reported high levels of ED avoidance (135/286, 47%) and mostly positive experiences of care provided by GPs. A high proportion of those who self-managed reported high levels of concern at the time of completing the survey (42/130, 32%).ConclusionsTelehealth consultations with GPs may be a more promotable alternative to the ED beyond the COVID-19 pandemic, providing easier access to a doctor with access to patients' medical histories than an appointment for a face-to-face consultation. GP telehealth consultations may also address barriers to accessing health care for those with potentially the greatest need. The reported use and positive experiences with GP telehealth appointments should inform further research on their appropriateness as an alternative to the ED.
| S-EPMC8428819 | biostudies-literature
Project description:BACKGROUND: Hong Kong (HK) has pluralistic primary care that is provided by a variety of doctors. The aim of our study was to assess patient-reported outcomes of primary care consultations in HK and whether having a family doctor (FD) made any difference. METHODS: We interviewed by telephone 3148 subjects from 5174 contacted households (response rate 60.8%) randomly selected from the general population of HK about the experience of their last primary care consultations in September 2007 and April 2008. We compared the patient-reported outcomes (PRO) and patient-centered process of care in those with a FD, those with other types of regular primary care doctors (ORD) and those without any regular primary care doctor (NRD). PRO included patient enablement, global improvement in health, overall satisfaction, and likelihood of recommending their doctors to family and friends. Patient-centered process of care indicators was explanations about the illness, and address of patient's concerns. RESULTS: One thousand one hundred fifty, 746, and 1157 reported to have FD, ORD, and NRD, respectively. Over 80% of those with FD consulted their usual primary care doctors in the last consultation compared with 27% of those with NRD. Compared with subjects having ORD or NRD, subjects with FD reported being more enabled after the consultation and were more likely to recommend their doctors to family and friends. Subjects with FD and ORD were more likely than those having NRD to report a global improvement in health and satisfaction. FD group was more likely than the other two groups to report receiving an explanation on the diagnosis, nature, and expected course of the illness, and having their concerns addressed. Patient enablement was associated with explanation of diagnosis, nature, and expected course of illness, and address of patient's concerns. CONCLUSION: People with a regular FD were more likely to feel being enabled and to experience patient-centered care in consultations.
| S-EPMC4292188 | biostudies-literature