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Patient-Reported Outcomes and Experiences with Population Genetic Testing Offered Through a Primary Care Network.

ABSTRACT: 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.

SUBMITTER: Lemke AA

PROVIDER: S-EPMC7891215 | biostudies-literature |

REPOSITORIES: biostudies-literature

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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.

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.

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.

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Patient-Reported Outcomes and Experiences with Population Genetic Testing Offered Through a Primary Care Network.

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