Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers

Autor:	Shari Kinel, Jack Griffin, George J. Yohrling, Stevan Ramirez, Abdul R Shaikh, Karen E. Anderson, Joni Steinman, Temitope Olofintuyi, Al Kinel
Rok vydání:	2019
Předmět:	0301 basic medicine Adult medicine.medical_specialty Specialty Disease Care provision Patient advocacy 03 medical and health sciences Cellular and Molecular Neuroscience 0302 clinical medicine Health care Medicine Humans Social media Family Quality of Health Care Consumer Health Information business.industry Focus group United States Clinical trial 030104 developmental biology Huntington Disease Caregivers Family medicine Health Care Surveys Neurology (clinical) business 030217 neurology & neurosurgery
Zdroj:	Journal of Huntington's disease. 8(4)
ISSN:	1879-6400
Popis:	Background Little is known about the quality of care for people living with Huntington's disease (HD) in the United States. Objective To document the current HD care experience and identify gaps in care provision in the United States. Methods Web-based surveys for persons self-identifying as being affected by HD (PAHD, which included individuals with, or at risk for HD) or as caregivers/family members, were developed and refined with targeted input from focus groups comprised of caregivers and family members. The surveys were disseminated via social media and patient advocacy partners from April-May 2017. Results Total valid responses numbered 797, including 585 caregiver/family respondents and 212 PAHD responses. Respondents reported care provision from HD specialty centers, primary care, movement disorder clinics, and other settings. One in five respondents reported that the person with HD was not currently receiving medical or community care. Respondents generally reported a good level of care, with HD specialists providing the highest rated healthcare experience. Caregiver/family respondents reported helping with a range of activities including budget/finances (60.5%), housekeeping (57.1%) and daily help (53.2%). Most respondents (97.9%) reported searching online, including general information about HD (86.4%), using HD social media channels (61.3%) and looking up clinical trials (59.8%). Respondents emphasized a need for support in financial planning and accessing care, and also for more HD education in the medical community. Conclusions There is need for more support for HD patients and families. People desire more credible, accessible information. Improving resources available to patients and families should be a goal for HD organizations, along with measurement of patient outcomes.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::063c0de94635f70eb1db5fbf17db0f97 https://pubmed.ncbi.nlm.nih.gov/31594241 Zobrazit plný text záznamu Plný text ve formátu PDF Plný text ve formátu HTML
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