Browsing by Subject "Patient-centered care"
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Item A health research agenda guided by migratory and seasonal farmworkers and the providers who serve them(Patient-Centered Outcomes Research Institute (PCORI), 2018-11) Holmes, Cheryl; Levy, Michelle; Mariscal, E. SusanaThis document shares the results of an almost two-year process to create a health research agenda specific to migratory and seasonal farmworkers. The purpose was to better understand what health outcomes are important to farmworkers in two Midwestern states and identify research and information gaps. A key strategy in accomplishing this work was not only to engage farmworkers in addition to providers, researchers and various other administrators but to do so in an active, direct and frequent manner, thus highlighting and elevating their voices and perspectives. This document is organized in that spirit.Item Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer(MDPI, 2022-12-21) Srinivas, Meghana; Kaye, Erica C.; Blazin, Lindsay J.; Baker, Justin N.; Mack, Jennifer W.; DuBois, James M.; Sisk, Bryan A.; Pediatrics, School of MedicineEffective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor.Item Assessing Parenting Behaviors to Improve Child Outcomes(American Academy of Pediatrics, 2015-02) O’Connell, Lauren K.; Davis, Matthew M.; Bauer, Nerissa S.; Pediatrics, School of MedicineItem Balancing patient-centered and safe pain care for non-surgical inpatients: clinical and managerial perspectives(Elsevier, 2018-12-24) Mazurenko, Olena; Andraka-Christou, Barbara T.; Bair, Matthew J.; Kara, Areeba Y.; Harle, Chris; Health Policy and Management, School of Public HealthBackground: Hospitals and clinicians aim to deliver care that is safe. Simultaneously, they are ensuring that care is patient-centered, meaning that it is respectful of patients’ values, preferences, and experiences. However, little is known about delivering care in cases where these goals may not align. For example, hospitals and clinicians are facing the daunting challenge of balancing safe and patient-centered pain care for nonsurgical patients, due to lack of comprehensive care guidelines and complexity of this patient population. Methods: To gather clinical and managerial perspectives on the importance, feasibility, and strategies used to balance patient-centered care (PCC) and safe pain care for nonsurgical inpatients, we conducted in-depth, semi-structured interviews with hospitalists (n=10), registered nurses (n=10), and health care managers (n=10) from one healthcare system in the Midwestern United States. We systematically examined transcribed interviews and identified major themes using a thematic analysis approach. Results: Participants acknowledged the importance of balancing PCC and safe pain care. They envisioned this balance as a continuum, with certain patients for whom it is easier (e.g., opioid-naïve patient with a fracture), versus more difficult (e.g., patient with opioid use disorder). Participants also reported several strategies they use to balance PCC and safe pain care, including offering alternatives to opioids, setting realistic pain goals and expectations, and using a team approach. Conclusions: Clinicians and health care managers use various strategies to balance PCC and safe pain care for nonsurgical patients. Future studies should examine the effectiveness of these strategies on patient outcomes.Item Biostatistics and Health Data Science, School of Medicine(JMIR, 2021-11-25) Zhang, Zhan; Kmoth, Lukas; Luo, Xiao; He, Zhe; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public HealthBackground: Personal clinical data, such as laboratory test results, are increasingly being made available to patients via patient portals. However, laboratory test results are presented in a way that is difficult for patients to interpret and use. Furthermore, the indications of laboratory test results may vary among patients with different characteristics and from different medical contexts. To date, little is known about how to design patient-centered technology to facilitate the interpretation of laboratory test results. Objective: The aim of this study is to explore design considerations for supporting patient-centered communication and comprehension of laboratory test results, as well as discussions between patients and health care providers. Methods: We conducted a user-centered, multicomponent design research consisting of user studies, an iterative prototype design, and pilot user evaluations, to explore design concepts and considerations that are useful for supporting patients in not only viewing but also interpreting and acting upon laboratory test results. Results: The user study results informed the iterative design of a system prototype, which had several interactive features: using graphical representations and clear takeaway messages to convey the concerning nature of the results; enabling users to annotate laboratory test reports; clarifying medical jargon using nontechnical verbiage and allowing users to interact with the medical terms (eg, saving, favoriting, or sorting); and providing pertinent and reliable information to help patients comprehend test results within their medical context. The results of a pilot user evaluation with 8 patients showed that the new patient-facing system was perceived as useful in not only presenting laboratory test results to patients in a meaningful way but also facilitating in situ patient-provider interactions. Conclusions: We draw on our findings to discuss design implications for supporting patient-centered communication of laboratory test results and how to make technology support informative, trustworthy, and empathetic.Item Chronic Lactation Insufficiency Is a Public Health Issue: Commentary on “We Need Patient-Centered Research in Breastfeeding Medicine” by Stuebe. Breastfeed Med 2021;16:349–350(Mary Ann Liebert, Inc., 2021) Shere, Helen; Weijer, Laurel; Dashnow, Harriet; Moreno, L. Elizabeth; Foxworthy Scott, Susanna; Baker, Helen; Medicine, School of MedicineItem Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer(IOS Press, 2018-01-20) Garg, Tullika; Connors, Jill Nault; Ladd, Ilene G.; Bogaczyk, Tyler L.; Larson, Sharon L.; Emergency Medicine, School of MedicineAlthough approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients. Objective: To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum. Methods: Through focus groups, patients treated for NMIBC (stageItem Factor structure of the autonomy preference index in people with severe mental illness(Elsevier, 2015-08-30) Bonfils, Kelsey A.; Adams, Erin L.; Mueser, Kim T.; Wright-Berryman, Jennifer L.; Salyers, Michelle P.; Department of Psychology, School of SciencePeople vary in the amount of control they want to exercise over decisions about their healthcare. Given the importance of patient-centered care, accurate measurement of these autonomy preferences is critical. This study aimed to assess the factor structure of the Autonomy Preference Index (API), used widely in general healthcare, in individuals with severe mental illness. Data came from two studies of people with severe mental illness (N=293) who were receiving mental health and/or primary care/integrated care services. Autonomy preferences were assessed with the API regarding both psychiatric and primary care services. Confirmatory factor analysis was used to evaluate fit of the hypothesized two-factor structure of the API (decision-making autonomy and information-seeking autonomy). Results indicated the hypothesized structure for the API did not adequately fit the data for either psychiatric or primary care services. Three problematic items were dropped, resulting in adequate fit for both types of treatment. These results suggest that with relatively minor modifications the API has an acceptable factor structure when asking people with severe mental illness about their preferences to be involved in decision-making. The modified API has clinical and research utility for this population in the burgeoning field of autonomy in patient-centered healthcare.Item Golden opportunities for clinical decision support in an era of team-based healthcare(American Medical Informatics Association, 2022) Dexter, Paul R.; Schleyer, Titus; Medicine, School of MedicineComputerized clinical decision support (CDS) will be essential to ensuring the safety and efficiency of new care delivery models, such as the patient-centered medical home. CDS will help empower non-physician team members, coordinate overall team efforts, and facilitate physician oversight. In this article, we discuss common clinical scenarios that could benefit from CDS optimized for team-based healthcare, including (1) low-acuity episodic illness, (2) diagnostic workup of new onset symptoms, (3) chronic care, (4) preventive care, and (5) care coordination. CDS that maximally supports teams may be one of biomedical informatics' best opportunities to decrease health care costs, improve quality, and increase clinical capacity.Item Measurement of Patients' Acceptable Symptom Levels and Priorities for Symptom Improvement in Advanced Prostate Cancer(Research Square, 2024-09-18) Snyder, Stella; Secinti, Ekin; Krueger, Ellen; Adra, Nabil; Pili, Roberto; Hanna, Nasser; Mosher, Catherine; Psychology, School of SciencePurpose: Limited research has evaluated the success criteria and priorities for symptom improvement of patients with cancer to inform patient-centered care. In this study, we adapted and tested a measure of these constructs, the Patient-Centered Outcomes Questionnaire (PCOQ), for patients with advanced prostate cancer. We compared acceptable symptom severity levels following symptom treatment across 10 symptoms and identified patient subgroups based on symptom importance. Methods: Patients with advanced prostate cancer (N = 99) participated in a one-time survey, which included a modified version of the PCOQ, standard symptom measures, and additional clinical characteristics. Results: The modified PCOQ demonstrated construct validity through its correlations with related theoretical constructs. There was a moderate correlation between symptom severity and importance. Acceptable symptom severity levels were generally low, with sexual dysfunction having a higher acceptable severity than most other symptoms. Three patient subgroups were identified: (1) those who rated all symptoms as low in importance (n = 43); (2) those who rated all symptoms as moderately important (n = 33); and (3) those who rated all symptoms as highly important (n= 18). Subgroups were associated with functional status, fatigue, sleep problems, pain, and emotional distress. Conclusion: The modified PCOQ demonstrated preliminary evidence of construct validity. Patients generally considered low symptom severity to be acceptable, with variations across symptoms. Results suggest that symptom severity and importance are related but distinct aspects of the symptom experience in advanced prostate cancer. Patients' diverse priorities for symptom improvement point to the need for individualized treatment plans.