희귀난치성질환 장애인의 주관적 건강상태 영향요인에 대한 탐색적 연구

An exploratory study on factors affecting subjective health status of the disabled with rare and intractable diseases

희귀난치성질환 장애인은 평생에 걸쳐 지속적인 치료와 관리가 필요한 건강취약계층이다. 치료 과정에서의 신체적, 심리적, 경제적 부담이 크지만, 아직 국내에서 이들의 특성과 건강상태에 영향을 미치는 요인에 대한 연구가 충분히 이루어지지 않았다. 본 연구는 ‘2017년 장애인실태조사’ 자료를 이차분석하여 희귀난치성질환을 가진 성인 장애인(N=483)과 비 희귀난치성질환 장애인(N=5,735)의 특성을 비교하고, 희귀난치성질환 장애인의 주관적 건강상태 영향요인에 대한 탐색적 연구를 진행하였다. 희귀난치성질환 장애인은 비 희귀난치성질환 장애인보다 주관적 건강상태를 낮게 평가하고 있었다. 주관적 건강상태에 영향을 미치는 요인은 인구학적 특성인 연령, 장애 및 건강특성인 ADL(일상생활능력)과 우울 여부, 사회경제학적 특성인 의료보험형태, 사회참여활동으로 나타났다. 연구 결과에 근거하여 희귀난치성질환 장애인의 건강증진에 대한 실천적•제도적 개입 방안이 필요함을 제언하였다.

Disabled people with rare and intractable diseases are medically - underserved populations that require continuous treatment and management for a lifetime. Although they suffer from significant physical, psychological, and economic difficulties during treatment process, studies on the factors affecting the characteristics and health status of people with rare and intractable diseases in Korea have not been sufficiently conducted. Therefore, this study compared the characteristics of adults with rare and intractable disease(N=483) and non-rare and intractable disabled people(N=5,735) by secondary analysis of ‘2017 National Survey of the Disabled Person’. In addition, exploratory study was conducted on the factors affecting the subjective health status of the disabled with rare and intractable diseases. As the results of this study, the disabled person with rare and intractable diseases had lower subjective health status than non-rare and intractable disabled people. The variables affecting the subjective health status of patients with rare and intractable diseases were age as demographical characteristics, ADL(Activities of daily living) and depression as disability and health characteristics, health insurance type and social participation as social-economic characteristics. Based on the research results, it is necessary to develop practical and institutional intervention plan for the health promotion of the disabled with rare and intractable diseases.