• 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.

• Korean Journal of Clinical Pharmacy
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• v.26 no.2
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• pp.121-127
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• 2016

Objective: Until now, there is minimal number of research for overall domestic status of orphan drug use in Korea. The purpose of this study is to identify the list of orphan drugs available in Korea and to understand the status of orphan drug usage in tertiary Hospitals and rare incurable disease Hospital. Methods: We made domestic orphan drug lists based on available orphan drugs in Korea. Based on this lists, we conducted e-mail survey from August, 2014 to September, 2014 to identify domestic status of orphan drug usage including the availability and management of orphan drugs. Results: There are three hundred and eighteen orphan drugs (184 ingredients) registered in Ministry of Food and Drug Safety. Among the three hundred and eighteen orphan drugs, Two hundred and twenty-eight drugs (102 ingredients) were selected. Information on each item was collected and documented with generic and brand names, manufacturers, wholesalers, indications, FDA approval status and insurance coverage. Forty-three tertiary hospitals and thirty-two rare incurable hospitals responded to the survey questionnaire (57.3%). According to the survey result, the antineoplastics and immunomodulating agents group has the highest percentage (40%) usage in the hospital. Of fortythree tertiary hospitals, thirteen hospitals manage orphan drugs separately (30.2%). Based on the reply, most of the healthcare professionals commented the drug information related to efficacy and safety including medication counseling of orphan drugs is insufficient. Conclusion: Through this study we anticipate providing an understanding of orphan drug usage status in Korea. We found the limited resources to the information on orphan drugs and this information requires updating on a regular basis. This can be the basis for further studies about preparing drug information, educational resources for rare disease patients.

• Health Policy and Management
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• v.19 no.4
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• pp.66-77
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• 2009

This study aims to examine the effect of socioeconomic status (hereafter, SES) on healthcare utilization of the patients with rare and incurable diseases. Information of 2,973 patients who were self-employed insured and utilized healthcare service in 2007 was drawn from the National Health Insurance (hereafter, NHI) claim data. SES was set as four groups based on the monthly contribution. Outcome variable was the expense for outpatient and in-hospital services, which was log-transformed and square-rooted in oder to obtain normal distribution. Covariates included age, gender, residence and diagnosis. To examine the effects after controlling for covariates, we employed generalized estimating equation model, since patients with the same diagnosis are likely to have similar characteristics of demographics and healthcare utilization. Univariate statistics showed that lower SES was associated with less utilization of healthcare services. After controlling for covariates, a significantly smaller amount of money was expended for the lowest SES group compared to the highest one. Rural residence was associated with less utilization, except that residents in Seoul significantly more utilized outpatient services in tertiary hospitals. Considering that there is a subsidy program for the low income patients, such differences in healthcare utilization according to SES seems to result from the burden of out-of-pocket payments for uncovered services of the NHI.

• Journal of The Korean Society of Integrative Medicine
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• v.9 no.1
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• pp.69-90
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• 2021

Purpose : This study explores unmet medical services within a region for patients admitted to a single medical institution in one region and was to analyze the importance and satisfaction of hospital selection attributes. Through this, we tried to solve the unmet medical needs of patients and provide useful basic data in terms of hospital management in the region. Methods : It were collected to a total of 250 questionnaires for patients admitted to the regional integrative medical hospital. However, 232 samples were used for the final analysis, excluding 18 copies not reported in good faith. For the analysis, first, demographic frequency analysis of inpatients and inpatients was performed, and second, characteristics of patients, including frequent disease receiving treatment, were analyzed. Next, descriptive statistics analysis was conducted on unmet medical service intentions. In terms of hospital selection attribute, the items of continuity maintenance (I quadrant), priority visibility (II quadrant), low priority (III quadrant), and excessive effort (IV quadrant) were derived using the IPA (importance-performance analysis) matrix technique. Results : The derived results were classified by item and area. In the priority administration area, it was the reputation and recognition of medical institutions and the service area of medical institutions. In the case of items, there were 6 items including the importance of surgery and medical expenses, and diet at hospitalization. 1) Conclusion : Thus a result of this study, resources are efficiently allocated to priority correction areas with high importance but low satisfaction and circulatory medical treatment is performed in the departments required by patients who use medical care and, various methods, such as preparing a policy to support medical expenses, should be sought.

• 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.

• Journal of Korean Academic Society 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.

• The Journal of the Korea Contents Association
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• v.17 no.3
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• pp.238-252
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• 2017

In the digital media environment, individuals' information behavior about donation has been more interactive than ever. This study tried to figure out which factors impact communicative actions, based on the situational theory of problem solving(STOPS) in the donation situation for children with a rare incurable disease. This study tried to figure out the instrumental role of communicative action in donation situation. The findings from the survey(N=524) revealed that problem recognition and involvement recognition have a positive influence on a situational motivation, while constraint recognition had a negative influence. A referent criterion and a situational motivation have a positive influence on communicative actions. Also, a perceived moral obligation and a anticipated guilt have additional explanation of situational motivation for children with a rare incurable disease.

• Journal of muscle and joint health
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• v.28 no.2
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• pp.200-208
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• 2021

Purpose: The purpose of this study was to establish the foundations for the application of appropriate programs for pain reduction in patients with rheumatoid arthritis. Methods: The literature on patients with rheumatoid arthritis were found on an electronic search site for South Korean academic papers. The search terms "rheumatism" and "rheumatoid arthritis" were used independently. The combined terms "rheumatism and pain" and "rheumatoid arthritis and pain" were also used. For the meta-analysis, the R version 3.5.1 program was utilized. Results: The meta-analysis of eight papers showed a large effect size of -4.11. The programs were most effective in the order of aquatic exercise, aromatherapy, self-help education, muscle strength exercises, and tai chi. Conclusion: This study could provide the basis for presenting appropriate programs for pain management in patients with rheumatoid arthritis.

• Health Policy and Management
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• v.24 no.2
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• pp.109-119
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• 2014

In accordance with the government's plan to expand the national health insurance (NHI) coverage for severe diseases such as cancer, heart disease, cerebrovascular disease, and rare and incurable disease, the diagnostic ultrasound services have been covered by NHI from October 1, 2013. The quality is very important factor in providing diagnostic services because they influence on the diagnosis, treatment, and outcome of diseases. In particular, equipments and health care providers plays an important role in providing qualitative services. The purpose of this paper is to examine the major feature of ultrasound services covered by health security system and to review quality assurance policies in other countries such as Australia, Japan, the USA, and Canada. In addition, we assessed the implication of those policies. We especially put emphasis on the types and qualifications of healthcare professionals and measures to manage equipments. All countries have reviewed on policies to promote the quality such as educational requirements of professionals or restrictions on the duration of equipment usage. Various measures should be implemented to assure the qualitative ultrasound service.

• Journal of Korean Society for Quality Management
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• v.51 no.4
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• pp.531-550
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• 2023

Purpose: The unique nature of life-and-death healthcare services sets them apart from other service industries. While many studies exist on the relationship between healthcare services and customer satisfaction, most of them focus on mildly ill patients, ignoring the differences between critically ill and non-seriously ill patients. This study discusses the actual quality of healthcare services for patients who are facing life-threatening illnesses and are on life support, as well as their right to protection and dignity. Methods: The survey conducted to 149 patients with the four major illnesses: cancer, heart disease, brain disease and rare and incurable disease, those who have experiences with senior general hospitals. Results: The basic statistics of this study are adequate to represent the four major critical illnesses, and the reliability and validity of this study's hypotheses, which were measured by multiple items, were analyzed, and the internal consistency was judged to be high. In addition, it was found that the convergent validity was good and the discriminant validity was also secured. When examining the goodness of fit of the hypotheses, the SRMR, which is the standardized root mean square of residuals that measures the difference between the covariance matrix of the data variables and the theoretical covariance matrix structure of the model, met the optimal criteria. Conclusion: The academic implications of this study are differentiated from other studies by moving away from evaluating the quality of healthcare services for mildly ill patients and focusing on the rights and dignity of patients with life-threatening illnesses in four senior general hospitals. In terms of academic implications, this study enriches the depth of related studies by demonstrating the right to protection and dignity as a factor of patient-centeredness based on physical environment quality, interaction quality, and outcome quality, which are presented as sub-factors of healthcare quality. We found that the three quality factors classified by Brady and Cronin (2001) are optimized for healthcare quality assessment and management, and that the results of patients' interaction quality assessment can be used to provide a comprehensive quality rating for hospitals. Health and human rights are inextricably linked, so assessing the degree to which rights and dignity are protected can be a superior and more comprehensive measurement tool than traditional health level measures for healthcare organizations. Practical implications: Improving the quality of the physical environment and the quality of outcomes is an important challenge for hospital managers who attract patients with life and death conditions, but given the scale and economics of time, money, and human inputs, improving the quality of interactions and defining them as performance indicators in hospital quality management is an efficient way to create maximum value in the short term.