scholarly journals Myotonic Dystrophy and Huntington’s Disease Care: “We Like to Think We’re Making a Difference”

2016 ◽  
Vol 43 (5) ◽  
pp. 678-686 ◽  
Author(s):  
Kori A. LaDonna ◽  
Christopher J. Watling ◽  
Susan L. Ray ◽  
Christine Piechowicz ◽  
Shannon L. Venance
Keyword(s):  
Huntington's Disease ◽  
Huntington’S Disease ◽  
Myotonic Dystrophy ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Care Provision ◽  
Patient Centered ◽  
Making A Difference ◽  
Care Approach ◽  
Centered Care

AbstractBackground: Patient-centered care for individuals with myotonic dystrophy (DM1) and Huntington’s disease (HD)—chronic, progressive, and life-limiting neurological conditions—may be challenged by patients’ cognitive and behavioral impairments. However, no research has explored health care providers’ (HCPs’) perspectives about patient-centered care provision for these patients along their disease trajectory. Methods: Constructivist grounded theory informed the iterative data collection and analysis process. Eleven DM1 or HD HCPs participated in semistructured interviews, and three stages of coding were used to analyze their interview transcripts. Codes were collapsed into themes and categories.Results: Three categories including an evolving care approach, fluid roles, and making a difference were identified. Participants described that their clinical care approach evolved depending on the patient’s disease stage and caregivers’ degree of involvement. HCPs described that their main goal was to provide hope to patients and caregivers through medical management, crisis prevention, support, and advocacy. Despite the lack of curative treatments, HCPs perceived that patients benefited from ongoing clinical care provided by proactive clinicians. Conclusions: Providing care for individuals with DM1 and HD is a balancing act. HCPs must strike a balance between (1) the frustrations and rewards of patient-centered care provision, (2) addressing symptoms and preventing and managing crises while focusing on patients’ and caregivers’ quality of life concerns, and (3) advocating for patients while addressing caregivers’ needs. This raises important questions: Is patient-centered care possible for patients with cognitive decline? Does chronic neurological care need to evolve to better address patients’ and caregivers’ complex needs?

Patient-Centered Care and Autonomy: Shared Decision-Making in Practice and a Suggestion for Practical Application in the Critically Ill

2019 ◽  
Vol 35 (11) ◽  
pp. 1352-1355
Author(s):  
Marianna V. Mapes ◽  
Peter A. DePergola ◽  
William T. McGee
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Critically Ill ◽  
Care Service ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Practical Application ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Centered Care

Decision-making for the hospitalized dying and critically ill is often characterized by an understanding of autonomy that leads to clinical care and outcomes that are antithetical to patients’ preferences around suffering and quality of life. A better understanding of autonomy will facilitate the ultimate goal of a patient-centered approach and ensure compassionate, high-quality care that respects our patients’ values. We reviewed the medical literature and our experiences through the ethics service, palliative care service, and critical care service of a large community teaching hospital. The cumulative experience of a senior intensivist was filtered through the lens of a medical ethicist and the palliative care team. The practical application of patient-centered care was discerned from these interactions. We determined that a clearer understanding of patient-centeredness would improve the experience and outcomes of care for our patients as well as our adherence to ethical practice. The practical applications of autonomy and patient-centered care were evaluated by the authors through clinical interactions on the wards to ascertain problems in understanding their meaning. Clarification of autonomy and patient-centeredness is provided using specific examples to enhance understanding and application of these principles in patient-centered care.

scholarly journals Using Patient-Reported Outcomes to Assess Healthcare Quality: Toward Better Measurement of Patient-Centered Care in Cardiovascular Disease

2021 ◽  
pp. e1-e9
Author(s):  
Raul Angel Garcia ◽  
John A Spertus
Keyword(s):  
Health Status ◽  
Patient Reported Outcomes ◽  
Health Management ◽  
Clinical Care ◽  
Healthcare Quality ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care

Patient-reported outcomes (PROs) are elicited directly from patients so they can describe their overall health status, including their symptoms, function, and quality of life. While commonly used as end points in clinical trials, PROs can play an important role in routine clinical care, population health management, and as a means for quantifying the quality of patient care. In this review, we propose that PROs be used to improve patient-centered care in the treatment of cardiovascular diseases given their importance to patients and society and their ability to improve doctor- provider communication. Furthermore, given the current variability in patients’ health status across different clinics and the fact that PROs can be improved by titrating therapy, we contend that PROs have a key opportunity to serve as measures of healthcare quality.

scholarly journals Health Communication Cards as a Tool for Behaviour Change

ISRN Obesity ◽  
2014 ◽  
Vol 2014 ◽  
pp. 1-10 ◽  
Author(s):  
Carrie L. Matteson ◽  
Thomas D. N. Merth ◽  
Diane T. Finegood
Keyword(s):  
Health Communication ◽  
Behaviour Change ◽  
Clinical Care ◽  
Patient Centered Care ◽  
Care Plan ◽  
Systems Science ◽  
Communication Tool ◽  
Patient Centered ◽  
Care Plans ◽  
Centered Care

Individuals seeking healthcare treatment in the context of obesity often experience difficulty engaging in discussions around their health and face challenges finding consensus with practitioners on care plans that best suit their lives. The complex set of biological, social, and environmental variables that have contributed to the higher prevalence of obesity are well illustrated in the foresight obesity system map. Effectively understanding and addressing key variables for each individual has proven to be difficult, with clinicians facing barriers and limited resources to help address patients’ unique needs. However, productive discussions inspired by patient centered care may be particularly effective in promoting behaviour change. Tools based on systems science that facilitate patient centered care and help identify behaviour change priorities have not been developed to help treat adult obesity. This project created and pilot tested a card based clinical communication tool designed to help facilitate conversations with individuals engaged in health behaviour change. The health communication cards were designed to help direct conversation between patients and healthcare providers toward issues relevant to the individual. Use of the cards to facilitate patient driven conversations in clinical care may help to streamline conversations, set realistic care plan goals, and improve long term rates of compliance.

scholarly journals Patient-centered care and the electronic health record: exploring functionality and gaps

JAMIA Open ◽  
2020 ◽  
Vol 3 (3) ◽  
pp. 360-368
Author(s):  
Jorie M Butler ◽  
Bryan Gibson ◽  
Lacey Lewis ◽  
Gayle Reiber ◽  
Heidi Kramer ◽  
...  
Keyword(s):  
Clinical Care ◽  
Patient Centered Care ◽  
Healthcare Systems ◽  
Data Systems ◽  
Patient Centered ◽  
Communication Preferences ◽  
Care Plans ◽  
Patient Goals ◽  
Centered Care ◽  
Electronic Health

Abstract Objective Healthcare systems have adopted electronic health records (EHRs) to support clinical care. Providing patient-centered care (PCC) is a goal of many healthcare systems. In this study, we sought to explore how existing EHR systems support PCC; defined as understanding the patient as a whole person, building relational connections between the clinician and patient, and supporting patients in health self-management. Materials and Methods We assessed availability of EHR functions consistent with providing PCC including patient goals and preferences, integrated care plans, and contextual and patient-generated data. We surveyed and then interviewed technical representatives and expert clinical users of 6 leading EHR systems. Questions focused on the availability of specific data and functions related to PCC (for technical representatives) and the clinical usefulness of PCC functions (for clinicians) in their EHR. Results Technical representatives (n = 6) reported that patient communication preferences, personalized indications for medications, and end of life preferences were functions implemented across 6 systems. Clinician users (n = 10) reported moderate usefulness of PCC functions (medians of 2–4 on a 5-pointy -35t scale), suggesting the potential for improvement across systems. Interviews revealed that clinicians do not have a shared conception of PCC. In many cases, data needed to deliver PCC was available in the EHR only in unstructured form. Data systems and functionality to support PCC are under development in these EHRs. Discussion and Conclusion There are current gaps in PCC functionality in EHRs and opportunities to support the practice of PCC through EHR redesign.

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