An Exploratory Analysis of Unmet Healthcare Needs Among Patients with Rare Diseases and Their Caregivers
DC Field | Value |
---|---|
dc.contributor.author | 최은진 |
dc.contributor.author | 박실비아 |
dc.contributor.author | 채수미 |
dc.contributor.author | 강혜리 |
dc.contributor.author | 문석준 |
dc.date.accessioned | 2022-07-12T08:30:59Z |
dc.date.available | 2022-07-12T08:30:59Z |
dc.date.issued | 2022-06-30 |
dc.identifier.issn | 1226-072X |
dc.identifier.uri | https://repository.kihasa.re.kr/handle/201002/40475 |
dc.description.abstract | 희귀질환자와 보호자의 미충족 의료수요의 영향요인을 탐색적으로 분석하는 데 연구의 목적이 있다. 자발적인 참여 기반 온라인 조사 결과 응답자는 총 456명으로 희귀질환자 본인 185명, 보호자 271명이었다. 응답된 희귀질환은 155개였다. 등록장애인 현황은 응답환자 본인은 20.5%, 보호자가 대리응답한 희귀질환자에서는 66.1%였다. 미충족 의료수요의 영향력을 보기 위한 회귀분석에 사용한 종속변수는 삶의 질, 독립변수는 환자의 장애 여부, 교육 수준, 경제활동, 가정의 소득 수준, 연간 의료이용량, 미충족 의료수요의 변수 등이었다. 통계적 유의성 확인을 위하여 상관분석, 분산분석, 다변량 회귀분석을 수행하였다. 치료가 안 되는 어려움과 치료약이 없는 고통, 의료비 부담의 호소가 컸다. 등록장애 유무에 따른 의료비에 유의한 차이가 있었다. 보호자는 대부분 장애가 있는 어린 환자를 간병하는 부모였기에 치료정보와 재활치료에 대한 수요가 큰 것으로 파악되었다. 미충족 의료수요는 주관적 건강과 삶의 질에 유의한 변수인 것을 확인하였고, 가정의 소득 수준과 통계적으로 유의한 상관관계가 있었다. 사회경제적 지원, 정보 접근성 강화, 가족상담이 필요하다. |
dc.description.abstract | This study was aimed at investigating unmet healthcare needs among rare diseases patients and their caregivers. An online survey was conducted of rare disease patients and their caregivers. A total of 456 responses was collected and analyzed. The respondents included 185 patients and 271 caregivers. They reported a total of 155 rare diseases. The prevalence of disability was 20.5% in the patient respondents, while the caregiver respondents reported a 66.1% disability prevalence for their rare disease patients. This study used quality of life as the dependent variable. The independent variables include demographic and socioeconomic variables, w/o disabled, education, household income, economic activity, medical use and unmet needs questions. We used such statistical methods as correlation, analysis of variance, and regression analysis. Most of the caregivers were parents of children with rare diseases who, lacking adequate supportive information, spent much money to get rehabilitation service. Economic activities such as engaging in full time or part time jobs, were positively associated with increased quality of life and this was statistically significant for both the patients and caregivers. There should be increased support for inclusive care for the patients and the family members with regard to economic support. Patient and caregivers need more support to get information and opportunities for treatment. |
dc.format | application/pdf |
dc.format.extent | 17 |
dc.language | kor |
dc.publisher | 한국보건사회연구원 |
dc.publisher | Korea Institute for Health and Social Affairs |
dc.rights | KOGL BY-NC-ND |
dc.rights.uri | https://creativecommons.org/licenses/by-nc-nd/2.0/kr/ |
dc.rights.uri | http://www.kogl.or.kr/info/licenseType4.do |
dc.title | 희귀질환자와 보호자의 미충족 의료수요에 대한 탐색적 분석 |
dc.title.alternative | An Exploratory Analysis of Unmet Healthcare Needs Among Patients with Rare Diseases and Their Caregivers |
dc.type | Article |
dc.type.local | Article(Series) |
dc.subject.keyword | 희귀질환자 |
dc.subject.keyword | 보호자 |
dc.subject.keyword | 미충족 의료수요 |
dc.subject.keyword | 장애 |
dc.subject.keyword | Rare Diseases |
dc.subject.keyword | Caregiver |
dc.subject.keyword | Unmet Heatlhcare Needs |
dc.subject.keyword | Disability |
dc.description.eprintVersion | published |
dc.contributor.alternativeName | Choi, Eun Jin |
dc.contributor.alternativeName | Park, Sylvia |
dc.contributor.alternativeName | Chae, Su Mi |
dc.contributor.alternativeName | Weng, Yue ru |
dc.contributor.alternativeName | Kang, HaeLi |
dc.contributor.alternativeName | Moon, Seok Jun |
dc.citation.title | 보건사회연구 |
dc.citation.title | Health and Social Welfare Review |
dc.citation.volume | 42 |
dc.citation.number | 2 |
dc.citation.date | 2022-06-30 |
dc.citation.startPage | 141 |
dc.citation.endPage | 157 |
dc.identifier.bibliographicCitation | 보건사회연구 제42권 제2호, pp.141-157 |
dc.identifier.bibliographicCitation | Health and Social Welfare Review Vol.42 No.2, pp.141-157 |
dc.date.dateaccepted | 2022-07-12T08:30:59Z |
dc.date.datesubmitted | 2022-07-12T08:30:59Z |
dc.subject.kihasa | 보건의료 서비스 |
dc.subject.kihasa | 보건의료 자원 |
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