Primary mitochondrial disease in the US: Data from patients and physicians' perspective on health care delivery
This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this diseas...
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| Published in | Data in brief Vol. 25; p. 104343 |
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| Main Authors | , , , , , , |
| Format | Journal Article |
| Language | English |
| Published |
Netherlands
Elsevier Inc
01.08.2019
Elsevier |
| Subjects | |
| Online Access | Get full text |
| ISSN | 2352-3409 2352-3409 |
| DOI | 10.1016/j.dib.2019.104343 |
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| Abstract | This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article “Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States.” Karaa et al., 2019 |
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| AbstractList | This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article “Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States.” Karaa et al., 2019 This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article "Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States." Karaa et al., 2019.This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article "Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States." Karaa et al., 2019. This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article "Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States." Karaa et al., 2019. This article presents data that examine the patient's perception of health care delivery for mitochondrial disease in the US. It also presents the opinions of mitochondrial disease expert physicians about creating a specialised network of clinics to oversee the care of patients with this disease within the US. Two separate electronic surveys were developed; one for mitochondrial disease patients and their families ascertaining their satisfaction with their current health care and the challenges they face. The other for the physicians group assessing the usefulness, feasibility and readiness to develop specialized care clinics for mitochondrial disease in the US. Survey responses and descriptive analysis are presented here. The data in this article is supplemental, and supports the information presented in the research article “Harmonizing care for rare diseases: How we developed the mitochondrial care network in the United States.” Karaa et al., 2019 Keywords: Mitochondrial disease, Health care delivery, Patients' perception of care, Physicians' opinion on care delivery |
| ArticleNumber | 104343 |
| Author | Karaa, Amel Goldstein, Amy Yeske, Philip E. Stanley, Laura Balcells, Cristy Mann, Kira Parikh, Sumit |
| AuthorAffiliation | e United Mitochondrial Disease Foundation, Pittsburgh, PA, USA f Neurogenetics, Center for Pediatric Neurology, Cleveland Clinic Children's Hospital, Cleveland, OH, USA c MitoAction, Boston, MA, USA b Human Genetics, Children's Hospital of Philadelphia, Philadelphia, PA, USA a Department of Genetics, Massachusetts General Hospital, Boston, MA, USA d Foundation for Mitochondrial Medicine, Atlanta, GA, USA |
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| Keywords | Physicians' opinion on care delivery Mitochondrial disease Health care delivery Patients' perception of care |
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| References | Karaa, Goldstein, Balcells, Mann, Stanley, Yeske, Parikh (bib1) 2019 Jun; 127 Karaa (10.1016/j.dib.2019.104343_bib1) 2019; 127 |
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| Title | Primary mitochondrial disease in the US: Data from patients and physicians' perspective on health care delivery |
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