scholarly journals Quality of life in adult patients with systemic autoimmune myopathies: towards the patient-centered care

2021 ◽  
Author(s):  
Rafael Alves Cordeiro ◽  
Dechristian França Barbieri ◽  
Frida Marina Fischer ◽  
Samuel Katsuyuki Shinjo
Keyword(s):  
Quality Of Life ◽  
Patient Centered Care ◽  
Adult Patients ◽  
Patient Centered ◽  
Centered Care

scholarly journals Patient-Centered Care, Glycemic Control, Diabetes Self-Care, and Quality of Life in Adults with Type 2 Diabetes

2016 ◽  
Vol 18 (10) ◽  
pp. 644-649 ◽  
Author(s):  
Joni S. Williams ◽  
Rebekah J. Walker ◽  
Brittany L. Smalls ◽  
Rachel Hill ◽  
Leonard E. Egede
Keyword(s):  
Quality Of Life ◽  
Type 2 Diabetes ◽  
Glycemic Control ◽  
Self Care ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Centered Care ◽  
Control Diabetes

scholarly journals Quality of Life in Late-Treated Patients With Disorders of Sex Development: Insights for Patient-Centered Care

2019 ◽  
Vol 6 ◽  
Author(s):  
Annastasia Ediati ◽  
Gijsbert H. W. Verrips ◽  
Achmad Zulfa Juniarto ◽  
Sultana M. H. Faradz ◽  
Stenvert L. S. Drop ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disorders Of Sex Development ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Sex Development ◽  
Centered Care

scholarly journals The GIMEMA-ALLIANCE Digital Health Platform for Patients With Hematologic Malignancies in the COVID-19 Pandemic and Postpandemic Era: Protocol for a Multicenter, Prospective, Observational Study (Preprint)

2020 ◽  
Author(s):  
Fabio Efficace ◽  
Massimo Breccia ◽  
Paola Fazi ◽  
Francesco Cottone ◽  
Bernhard Holzner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Digital Health ◽  
Hematologic Malignancies ◽  
Patient Centered Care ◽  
Patient Reported Outcome ◽  
Routine Practice ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care

BACKGROUND The COVID-19 pandemic has raised unprecedented challenges in the management of patients with cancer and has increased the demands for digital health tools that, for example, could facilitate remote monitoring of patients. Based on this, the Gruppo Italiano Malattie Ematologiche dell’Adulto (GIMEMA) has recently developed a digital health tool dedicated to patients with hematologic malignancies: the GIMEMA-ALLIANCE platform. OBJECTIVE The main objectives of this web-based platform are to generate relevant data to better understand quality of life, symptoms, and medication adherence during the COVID-19 pandemic and postpandemic era; to develop a prospective real-life registry on outcomes of patients with hematologic cancer, with or without a diagnosis of COVID-19; and to facilitate patient-centered care in routine practice. METHODS The platform consists of physician- and patient-secure portals and enables electronic patient-reported outcome (ePRO) assessments with real-time graphical presentation to physicians of individual patient symptoms and quality-of-life outcomes. Automated alerts are sent to treating hematologists based on the following predetermined criteria: presence of clinically important problems and symptoms, problems with adherence to therapy, and risk of COVID-19 diagnosis. The platform also allows physicians to set up video consultations. Clinical information regarding disease and treatment as well as clinical and survival outcomes are also prospectively collected. RESULTS Recruitment of participants started in December 2020. As of April 2021, a total of 116 patients have been enrolled in this study. Use of this platform may help to improve patient-physician communication and help hematologists in the early recognition of clinically important problems and symptoms of their patients. More than 20 community and university-based hospitals have currently agreed to participate. In addition to patient-reported outcome data, the prospective collection of disease- and treatment-related information, as well as data on possible COVID-19 diagnosis and COVID-19 vaccination, will allow the development of a large database to also identify subgroups of patients at risk of poor outcomes. CONCLUSIONS Data generated via this platform will help to answer clinically relevant questions for patients with hematologic malignancies during the COVID-19 pandemic and postpandemic era. The use of the GIMEMA-ALLIANCE platform in routine practice may also contribute to enhancing patient-centered care. CLINICALTRIAL ClinicalTrials.gov NCT04581187; https://clinicaltrials.gov/ct2/show/NCT04581187 INTERNATIONAL REGISTERED REPORT PRR1-10.2196/25271

Quality of life should be measurred better (not abandoned) in patient-centered care

2021 ◽  
Author(s):  
Lucshman Raveendran ◽  
Martin Koyle ◽  
Darius Bagli ◽  
Gabriel M. Ronen ◽  
Kathleen J. Sawin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Centered Care

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

scholarly journals Patient-Centered Care: An Examination of Provider–Patient Communication Over Time

2019 ◽  
Vol 6 ◽  
pp. 233339281988287
Author(s):  
Leslie Riggle Miller ◽  
B. Mitchell Peck
Keyword(s):  
Positive Impact ◽  
Patient Centered Care ◽  
Patient Communication ◽  
Self Report ◽  
Primary Data ◽  
Provider Communication ◽  
Patient Centered ◽  
Centered Care ◽  
Over Time

Objective: To examine the quality of provider communication over time considering the increasing emphasis on patient-centered care (PCC). Patient-centered care has been shown to have a positive impact on health outcomes, care experiences, quality-of-life, as well as decreased costs. Given this emphasis, we expect that provider–patient communication has improved over time. Data Source: We collected primary data by self-report surveys between summer 2017 and fall 2018. Study Design: We use a quantitative retrospective cohort study of a national sample of 353 patients who had an ostomy surgery. Data Extraction Method: We measure provider communication from open-ended self-reports from patients of the number of stated inadequacies in their care. Principal Findings: Results show that the time since patients had their surgery is related to higher quality provider communication. That is, patients who had their surgery further back in time reported higher quality provider communication compared with patients who had their surgery performed more recently. Conclusion: Results suggest that the quality of provider communication has not improved even with an emphasis on PCC.

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