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Use of Electronic Patient Reported Outcomes in Clinical Nephrology Practice: A Qualitative Pilot Study.

ABSTRACT: Background:Use of patient-reported outcome measures (PROM) in clinical practice can offer clinicians important information about the impact of illness on patients and their quality of life. Electronic reporting of patient-reported outcomes (ePROs) provide quick access of this information to the health care team. Although this type of information is acknowledged to be critical to not only improving the quality of care but also involving patients in care planning, little is known about how ePRO reports can be used in nephrology clinics to enhance person-centered care. Objective:The purpose of this research was to examine how ePROs were used in home dialysis clinics. Design:A pilot qualitative research design was employed. Setting:The study was conducted in 2 home dialysis clinics over 6 months. Patients:A total of 99 home dialysis patients and 12 nurses participated in the study. Measurements:Patients completed 2 ePROs (the Edmonton Symptom Assessment System revised for renal patients and Kidney Disease Quality of Life-36) prior to their clinic appointment, and results were given to their health care providers. Nurses saw patients first, along with ePRO data. Patients and nurses consented to having their clinic interactions observed and audio recorded (n = 169). Methods:Summative content analysis was used to synthesize the data. Results:The ePRO data were used to discuss 24 specific issues (brought up a total of 456 times over 165 interactions), most frequently: itchiness (n = 55), appetite (n = 51), problems with sleeping (n = 50), tiredness (n = 46), and shortness of breath (n = 45) as well as overall patient health and the general effects of kidney disease on the patient's daily life. The issues that most often prompted a change in care plan, referral to another health care professional, or further assessment included itching (n = 23), depression (n = 18), tiredness (n = 13), sleeping (n = 12), anxiety (n = 11), and disease interfering with daily life (n = 7). Limitations:Limitations include the duration of follow-up (6 months), the restriction to 2 home dialysis clinics, and the potential for the Hawthorne effect due to observation. Conclusions:Use of these ePROs in the home dialysis clinics provided useful information that guided focused assessments and augmented standard assessments to support person-centered care. Further studies are warranted to identify whether this practice offers benefits over usual care.

SUBMITTER: Schick-Makaroff K

PROVIDER: S-EPMC6769209 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Use of Electronic Patient Reported Outcomes in Clinical Nephrology Practice: A Qualitative Pilot Study.

Schick-Makaroff Kara K Tate Kaitlyn K Molzahn Anita A

Canadian journal of kidney health and disease 20190930

<h4>Background</h4>Use of patient-reported outcome measures (PROM) in clinical practice can offer clinicians important information about the impact of illness on patients and their quality of life. Electronic reporting of patient-reported outcomes (ePROs) provide quick access of this information to the health care team. Although this type of information is acknowledged to be critical to not only improving the quality of care but also involving patients in care planning, little is known about how ...[more]

PMID: 31632681

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Project description:BackgroundPatient-reported outcomes (PROs) are increasingly mandated in kidney care to incorporate patients' perspectives.ObjectivesWe assessed whether educational support for clinicians using electronic (e)PROs could enhance person-centered care.DesignA process evaluation, using a mixed methods longitudinal comparative concurrent design was undertaken of educational support to clinicians on routine use of ePROs. In two urban home dialysis clinics in Alberta, Canada, patients completed ePROs. At the implementation site, clinicians were provided with ePROs and clinician-oriented education via voluntary workshops. At the non-implementation site, neither were provided. Person-centered care was measured using the Patient Assessment of Chronic Illness Care-20 (PACIC-20).MethodsLongitudinal structural equation models (SEMs) compared change in overall PACIC scores. The interpretive description approach, using thematic analysis of qualitative data, further evaluated processes of implementation.ResultsData were collected from questionnaires completed by 543 patients, 4 workshops, 15 focus groups, and 37 interviews. There was no overall difference in person-centered care throughout the study, including after delivery of workshops. The longitudinal SEMs revealed substantial individual-level variability in overall PACIC trajectories. However, there was no improvement at the implementation site and no difference between the sites during both the pre- and post-workshop periods. Similar results were obtained for each PACIC domain. Qualitative analysis provided insights into why there was no substantial difference between sites: (1) clinicians wanted to see kidney symptoms, not quality of life, (2) workshops were tailored to clinicians' educational needs, not patients' needs, and (3) variable use of ePRO data by clinicians.ConclusionTraining clinicians on use of ePROs is complex and likely only part of what is required to enhance person-centered care.RegistrationNCT03149328. https://clinicaltrials.gov/ct2/show/NCT03149328.

Project description:Background and objectivesElectronic health record (EHR) patient portals allow individuals to access their medical information with the intent of patient empowerment. However, little is known about portal use in nephrology patients. We addressed this gap by characterizing adoption of an EHR portal, assessing secular trends, and examining the association of portal adoption and BP control (<140/90 mmHg).Design, setting, participants, & measurementsPatients seen between January 1, 2010, and December 31, 2012, at any of four university-affiliated nephrology offices who had at least one additional nephrology follow-up visit before June 30, 2013, were included. Sociodemographic characteristics, comorbidities, clinical measurements, and office visits were abstracted from the EHR. Neighborhood median household income was obtained from the American Community Survey 2012.ResultsOf 2803 patients, 1098 (39%) accessed the portal. Over 87% of users reviewed laboratory results, 85% reviewed their medical information (e.g., medical history), 85% reviewed or altered appointments, 77% reviewed medications, 65% requested medication refills, and 31% requested medical advice from their renal provider. In adjusted models, older age, African-American race (odds ratio [OR], 0.50; 95% confidence interval [95% CI], 0.39 to 0.64), Medicaid status (OR, 0.53; 95% CI, 0.36 to 0.77), and lower neighborhood median household income were associated with not accessing the portal. Portal adoption increased over time (2011 versus 2010: OR, 1.38 [95% CI, 1.09 to 1.75]; 2012 versus 2010: OR, 1.95 [95% CI, 1.44 to 2.64]). Portal adoption was correlated with BP control in patients with a diagnosis of hypertension; however, in the fully adjusted model this was somewhat attenuated and no longer statistically significant (OR, 1.11; 95% CI, 0.99 to 1.24).ConclusionWhile portal adoption appears to be increasing, greater attention is needed to understand why vulnerable populations do not access it. Future research should examine barriers to the use of e-health technologies in underserved patients with CKD, interventions to address them, and their potential to improve outcomes.

Project description:BackgroundMeasuring patient-reported outcomes (PROs) requires an individual's perspective on their symptoms, functional status, and quality of life. Digital health enables remote electronic PRO (ePRO) assessments as a clinical decision support tool to facilitate meaningful provider interactions and personalized treatment.ObjectiveThis study explored the feasibility and acceptability of collecting ePROs using validated health-related quality of life (HRQoL) questionnaires for prostate cancer.MethodsUsing Apple ResearchKit software, the Strength Through Insight app was created with content from validated HRQoL tools 26-item Expanded Prostate Cancer Index Composite (EPIC) or EPIC for Clinical Practice and 8-item Functional Assessment of Cancer Therapy Advanced Prostate Symptom Index. In a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates, participants were recruited, and instructed to download Strength Through Insight and complete ePROs once a week over 12 weeks. A mixed methods approach, including qualitative pre- and poststudy interviews, was used to evaluate the feasibility and acceptability of Strength Through Insight for the collection and care management of cancer treatment.ResultsThirty patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Moreover, 86% (25/29) reached satisfactory questionnaire completion (defined as completion of 60% of weekly questions over 12 weeks). The lower bound of the exact one-sided 95% CI was 71%, exceeding the 70% feasibility threshold. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources), and only a few participants identified with having a low digital literacy level (defined as only having the ability to gather information on the Web). Interviews were thematically analyzed to reveal the following: (1) value of emotional support and wellness in cancer treatment, (2) rise of social patient advocacy in online patient communities and networks, (3) patient concerns over privacy, and (4) desire for personalized engagement tools.ConclusionsStrength Through Insight was demonstrated as a feasible and acceptable method of data collection for ePROs. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported that using the smartphone app is easier than or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. This study expands on current research involving the value of digital health, as a social and behavioral science, augmented with technology, can begin to contribute to population health management, as it shapes psychographic segmentation by demographic, socioeconomic, health condition, or behavioral factors to group patients by their distinct personalities and motivations, which influence their choices.Trial registrationClinicalTrials.gov NC03197948; http://clinicaltrials.gov/ct2/show/NC03197948.

Dataset Information

Use of Electronic Patient Reported Outcomes in Clinical Nephrology Practice: A Qualitative Pilot Study.

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Use of Electronic Patient Reported Outcomes in Clinical Nephrology Practice: A Qualitative Pilot Study.

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