• 가정의 벗
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• v.37 no.4 s.428
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• pp.28-29
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• 2004

지난해 9월 정부에서는 진료비 지원대상에 포함되는 희귀난치성질환에 페브리병 등 3개 질환을 추가해 모두 11개 질환으로 늘리기로 했다고 발표했다. 그러나 100여 종이 넘는 희귀난치성질환을 앓고 있는 환자와 가족에게 희망을 주기에는 아직 역부족이 아닐까.

• RED RIBBON
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• s.58
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• pp.20-21
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• 2004

정부는 고액의 치료비가 소요되는 희귀난치성 질환에 대해 본인일부부담금 산정특례로 지정하여 치료비의 $20\%$만 본인이 부담하는 특례를 주고 있다. 지난해까지 12개 질환에 대해서만 산정특례로 인정되던 것이 올해 1월부터는 에이즈를 포함하여 62개 질환으로 대폭 확대되어 많은 환자들의 경제적 부담을 덜게 되었다.

• Research in Community and Public Health Nursing
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• v.17 no.3
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• pp.364-375
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• 2006

Purpose: The purpose of the study was to investigate burden and the qualify of life in caregivers who are taking care of home-based rare and incurable disease patients. Methods: The subjects of this study were 300 caregivers of rare and incurable disease patients registered at five health centers in Seoul. A survey was conducted by mail and visit in person during the period from the 25th of March to the 12th of May 2005. Collected data were analyzed through t-test, ANOVA, Pearson's correlation coefficient. Result: The mean burden of caregivers was 3.42, and the mean qualify of life of caregivers was 2.71. Burden and QoL showed significant differences according to caregivers' characteristics such as sender, age, relation to the patient, academic qualification, religion, occupation, monthly household income and perceived health condition. Caregivers' burden was in an inverse correlation with their quality of life. Conclusions: According to the results of this study, rare and incurable disease caregivers' burden and their quality of life were in a significant correlation with each other. In order to improve caregivers' quality of life by reducing their burden, we need to reestablish comprehensive policies for rare and incurable disease management including nursing intervention strategies for caregivers.

• The Korean Chronic Disease News
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• no.297
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• pp.1-18
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• 2005

국민보건은 우리에게 맡겨라/한국에‘세계줄기세포허브’개설/치매.중풍 노인들 간병 수발 문제 해결/조류독감 겁낼 필요없다/보건복지부 조직 전면 개편/임상노인의학회장에 유동준 회장 취임/희귀.난치성 질환 보험급여 대폭 확대/국립암센터, ‘세계최고’비전 제시/경기도립의료원, 서민병원으로 탈바꿈/감압치료 디스크탈출증에"탁월"/희망과 건강이 함께 하는 도시/현실성 있는 보건사업 전략 효율적 수행/고혈압의 예방 및 치료/‘금연’도 의학적 접근 필요하다/

• Journal of The Korean Society of Inherited Metabolic disease
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• v.17 no.1
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• pp.1-10
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• 2017

Purpose: This study aimed to investigate the perception and emotional experiences in rare and intractable diseases for caregivers of pediatric patients with mitochondrial diseases in order to provide therapeutic interventions for patients, caregivers, and families. Methods: A total of 83 caregivers of pediatric patients with mitochondrial diseases were recruited from the pediatric mitochondrial disease clinics of the Gangnam Severance Hospital in South Korea. Participants completed the survey about their perception of mitochondrial disease and emotional experiences after the diagnosis, and these clinical data were analyzed accordingly. Results: Surveys from a total of 83 caregivers of patients were analyzed, and the patients' age ranged from 6 to 12 years (33%), followed by ages 1 to 6 years (30%). Children with mitochondrial diseases were between 0 and 0.5 years of age at the time of first symptom onset (43%), and the duration of illness lasted more than 10 years in most cases (42%). Prior to diagnosis of mitochondrial diseases, the amount of awareness the caregivers had was 'Not at all' for both rare and intractable diseases and mitochondrial diseases in 44 cases and 68 cases, respectively. For the caregivers' emotional experiences, the most common initial responses were 'Discouraged/despair', 'Helpless/lethargic', and 'Disconcerted'. 'Anxious', 'Committed to treatment', and 'Responsibility as family members' were the most common emotional responses from the caregivers, followed by 'Disconcerted' and 'Helpless/lethargic'. Conclusion: It is important to consider the level of perception and emotional experiences of caregivers and patients with rare and intractable mitochondrial diseases for planning treatment programs.

• Korean Journal of Adult Nursing
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• v.26 no.2
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• pp.191-202
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• 2014

Purpose: This study was aimed to survey the actual caregiving conditions of family caregivers who are caring patients with rare and incurable diseases using home ventilators at home, and to clarify any factors affecting their burdens and quality of life. Methods: A questionnaire survey was performed by the 159 subjects, and the questionnaires contained the actual conditions of caregiving activities, and caregiver's burdens and quality of life. The collected data was analyzed by ANOVA, Pearson's correlation, and stepwise linear regressions. Results: The mean of burden scores was 3.55 out of 5, and influencing variables included the relationships with patient (spouse), respite (moderate), health status, and diagnosis (non ALS), with the explanatory power of 30.0%. The mean of the quality of life was 2.58 point, and the influencing variables included burdens, health status, and respite (enough), with the explanatory power of 39.0%. Conclusion: In order to improve the quality of life among family caregivers caring for patients with using a home ventilator, it is required to develop strategies for reducing caregiving burdens as well as to introduce family respite welfare systems to family caregivers.

• 대한한약신문
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• s.121
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• pp.1-8
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• 2007

국세청, 7월부터 현금거래 신고.확인제 시행/수입한약재 정밀검사품목 90품목 추가/제63차 한약수급조절위원회 회의/서울약령시 한의약문화축제 성황리 폐막/'녹용없는 녹용탕' 유명 프랜차이즈 한의원 '눈속임'/'한약재 포제품' 제법.규격 표준화 추진/세명대, '한방바이오산업 임상지원센터' 설치사업 확정/안궁우황환 사건 관련 한조약 VS 한의협 주장 엇갈려/국내 우수한약제품 해외시장 진출 본격화/"맥문동.시호.황금.백수오 개방 유예"/희귀난치성질환 정보 이용 접근 더 쉬워져/커피, 간암 예방 효과 있어 하루 2잔 이상, 간암 위험 43% 감소/고려 홍삼 중국 진출 '청신호'/아토피 피부염 한약치료 임상시험자 모집/한의약 R&D투자, 과기 전체의 0.13%/생약협 '함양 하고초 마을 약초기행' 실시/중국, 중의약 규범 국제표준화 추진/동의의료원, 양한방협진 강화/'양.한방 협진의 미래 지향적 접근' 세미나/비증 이야기/명칭이 비슷하여 감별하기 어려운 한약재/지부탐방-지부장에게 듣는다/우리 약초를 찾아서-황기

• Proceedings of the Plant Resources Society of Korea Conference
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• 2022.09a
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• pp.121-121
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• 2022

마자인(麻子仁)은 뽕나무과에 속하는 대마(Cannabis sativa L.)의 종자로써, 治血虛津虧, 腸燥便秘하며, 中風汗出, 逐水, 利小便, 破積血, 復血脈, 乳婦産後餘疾, 長髮 등에 사용한다고 기록되어 있다. 마자인 종자의 외피에는 환각성분인 Tetrahydrocannabinol (THC) 및 뇌전증과 다발성경화증 등 희귀, 난치성 질환의 치료제로 사용되는 Cannabidiol (CBD) 성분이 함유되어 있다. 따라서 외피를 제거한 마자인은 햄프씨드(Hemp Seed)로써 식품으로 이용되지만, 외피를 제거하지 않은 마자인은 의약품으로써 사용이 되고 있다. 마자인은 윤조탕, 자윤환, 마자인환 등 다양한 한의학 처방에 사용되지만, 외피에 함유되어있는 THC 및 CBD의 함유량 및 안전성에 대한 연구는 밝혀지지 않았다. 이에 마자인 함유처방의 안전성을 입증하는 실험방법을 설계하였다. 우선 의약품으로 유통되는 마자인의 외피에 THC 및 CBD 성분이 있는지를 확인하기 위해 마자인을 다양한 용매별 (물, 헥산 등)로 추출한 후 LC/MS를 이용해 성분 유무를 확인한다. 또한, 마자인 함유 처방 (마자인환, 자윤환, 윤조탕 등)을 복용하였을 경우 혈중에 THC 및 CBD 성분이 있는지를 확인하는 방법으로 실험동물에 마자인 함유 /처방을 투여한 후 혈액을 채취한다. 마찬가지로 성분 유무를 측정하는 방법은 LC/MS를 이용해 확인한다.

• Journal of Home Health Care Nursing
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• v.23 no.1
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• pp.25-33
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• 2016

Purpose: This study aimed to survey caregivers of patients with Neuromuscular Rare and Incurable Disease (NRID) using invasive home mechanical ventilator (HMV), in order to compare the incident rate of pneumonia by tracheal suction procedures used. Method: Participants were 99 family caregivers of NRID patients using HMV. Participants were given a questionnaire consisting of 12 demographic items, 10 items about disease and HMV related characteristics, 11 items about tracheal suction procedures, and 2 items about the incidence of pneumonia. Data were analyzed using chi-square tests and t-tests. Results: The items that predicted the incidence of pneumonia were "change of irrigation saline every suction" (p=.047), "use of aseptic catheter every suction" (p=.004), and "instillation of normal saline before suction" (p=.027). In addition, these items were 47.4%, 51.4%, and 38.8% respectively. Conclusion: Family members caring for NRID patients with invasive HMV should be educated about tracheal suction, especially the necessity of changing irrigation saline after every suction, using the aseptic catheter for every suction, and instillation of normal saline before suction. Medical personnel such as home care nurses should periodically check tracheal suction procedures, and re-educate family caregivers when necessary.

• Journal of Home Health Care Nursing
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• v.20 no.1
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• pp.5-15
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• 2013

Purpose: This study aimed to investigate the self-care education experience, self-care performance, and home care service needs of patients with rare and incurable diseases who use a home ventilator. Methods: From2 ventilator rental companies and 5 hospitals, records of 162 subjects were collected to obtain data regarding self-care education experience (23 items) and home care service needs (25 items). Results: Of the subjects, 65.4% were male and 55.6% had a myotrophic lateral sclerosis. The items with the highest and lowest levels of self-care education experience were "using the ventilator"(94.0%) and "community-available resource information"(27.0%), respectively. Meanwhile, self-care was performed well in terms of "personal hygiene"(59.6%) but not performed well in "community-available resource information"(23.7%). "Health status assessment" had the highest need(88.2%) of home care services. Generally, the need of home care services was higher for the patients using invasive ventilators than that for those using non-invasive ventilators. Conclusion: Home care nurses need to not only provide physical care for the patients but also strengthen their roles of enhancing patient access to and utilization of various community resources to provide systematic and individualized training and care.