family ? 해석2) 친구나 가족과 관계를 맺거나 어떤 것을 함께하기가 어려웠습니까?
8. making it difficult to work to earn a living ?
11. making you eat less of the things you like?
해석1) 좋아하는 음식을 덜 먹어야 했습니까?
해석2) 당신이 좋아하는 음식을 덜 먹어야 했습니 까?
12. making you short of breath?
해석1) 숨쉬기가 힘들었습니까?
해석2) 숨이 찼습니까?
13. making you tired, fatigued or lacking energy?
해석1) 피곤함이나 에너지가 부족함을 느꼈습니 까?
해석2) 지치고 피곤하거나 에너지가 부족한 것을 느꼈습니까?
14. making you stay in a hospital?
해석1) 병원에 입원을 했습니까?
해석2) 병원에 입원해야 했습니까?
15. costing you money for medical care?
해석1) 의료비 지출이 있었습니까?
해석2) 의료비로 인한 비용지출이 있었습니까?
16. giving you side effects from treatments?
해석1) 치료로 인한 부작용이 있었습니까?
해석2) 치료로 인한 부작용이 있었습니까?
17. making you feel you are a burden to your family or friends?
해석1) 가족이나 친구에게 부담이 된다고 느꼈습 니까?
해석2) 친구나 가족에게 짐이 된다고 느꼈습니까?
18. making you feel a loss of self-control in your life?
해석1) 당신의 생활에서 자제력을 잃었다고 느낀
20. making it difficult for you to concentrate or
번역본 (2명) 검토 (3명)
출’이라고 번역해도 충분히 자연스럽다고 결
었습니까?
검토(3명) 역번역
The purpose of the following questions are to find out how your pulmonary hypertension affected your everyday life during the last month(four weeks). The items listed below describe various ways of how people can be affected. If you are sure that an item does not apply to you or has nothing to do with pulmonary hypertension, circle 0 (no) and move on to the next item. If an item does apply to you, circle a number between 1 to 5 according to how much it hindered you from living your everyday life.
1달 동안 폐동맥고혈압으로 인해 일상 생활에서 다음과 같은 문제를 겪었습 니까?
Did you have the following problems in your everyday life because of pulmonary hypertension during the last month?
발목이나 다리가 부었습니까? Was there any swelling in your ankles or legs?
낮에 활동하던 중에도 앉거나 누워서 쉬어야 했습니까?
Did you have to sit or lie down to rest when you were active during the day?
걷거나 계단을 오르기가 힘들었습니 까?
Did you have difficulties walking or climbing stairs?
집안일을 하기가 힘들었습니까? Did you have difficulties doing housework?
Was it difficult having a smooth relationship or doing something with friends or family?
생계를 위해 일하기가 힘들었습니까? Did you have difficulties working for a living?
여가생활, 스포츠, 취미생활을 즐기기 어려웠습니까?
Was it difficult to enjoy leisure times, sports or hobbies?
성생활이 어려웠습니까? Did you have difficulties with sexual 3) LPH 역번역
activities?
좋아하는 음식을 덜 먹게 되었습니까? Did you have to eat less of the things you like?
숨이 찼습니까? Did you have shortness of breath?
지치고, 피곤하거나 기력이 떨어진다
고 느꼈습니까? Were you tired, fatigued or lacking energy?
지난 한 달 내에 폐동맥고혈압과 관련 하여 병원에 입원해야 했습니까?
Did you have to stay in a hospital due to a problem concerning pulmonary hypertension during the last month?
폐동맥고혈압과 관련된 의료비 지출이 있었습니까?
Was there a cost for medical care concerning pulmonary hypertension?
치료로 인한 부작용이 있었습니까? Was there any side effects from treatments?
가족이나 친구에게 짐이 된다고 느꼈
습니까? Did you feel that you are a burden to your family or friends?
일상생활에서 자제력을 잃었다고 느꼈 습니까?
Did you feel you had lost self-control in your daily life?
걱정이 되었습니까? Were you worried?
집중하거나 무언가를 기억하기가 어려 웠습니까?
Was it difficult to concentrate or remember something?
우울함을 느꼈습니까? Did you feel depressed?
폐동맥고혈압에 대상 삶의 질 설문지
폐동맥고혈압에 대한 삶의 질 설문지
13. 성생활이 어려웠습니까? 0 1 2 3 4 5 14. 좋아하는 음식을 덜 먹게 되었습니까? 0 1 2 3 4 5
15. 숨이 찼습니까? 0 1 2 3 4 5
16. 지치고, 피곤하거나 기력이 떨어진다고 느꼈습니
까? 0 1 2 3 4 5
17. 지난 한 달 동안 폐동맥고혈압과 관련하여 병원
에 입원한 적이 있습니까? 0 1 2 3 4 5
18. 의료비 지출에 경제적 부담을 느낀 적이 있습니
까? 0 1 2 3 4 5
19. 치료로 인한 부작용이 있었습니까? 0 1 2 3 4 5
20. 친구나 가족에게 짐이 된다고 느낀 적이 있습니
까? 0 1 2 3 4 5
21. 일상생활에서 자제력을 잃었다고 느꼈습니까? 0 1 2 3 4 5
22. 걱정이 되었습니까? 0 1 2 3 4 5
23. 집중하거나 무언가를 기억하기가 어려웠습니까? 0 1 2 3 4 5
24. 우울하다고 느꼈습니까? 0 1 2 3 4 5
25. 불안하다고 느꼈습니까? 0 1 2 3 4 5
26. 현재 삶이 불만족스럽습니까? 0 1 2 3 4 5
27. 내 건강에 대해 직장이나 지역사회의 배려가 적
다고 느꼈습니까? 0 1 2 3 4 5
28. 배우자(없으면 가장 가까운 사람)가 현재의 어려
움을 극복하는데 힘이 되어주지 못했습니까? 0 1 2 3 4 5
부록 4. 연구대상자 설명문 및 동의서
부록 5. 설문지
ABSTRACT
Factors Affecting the Quality of life among the Patients with Pulmonary Artery Hypertension
Kim, Jae Hee Department of nursing The Graduate School Yonsei University
Pulmonary artery hypertension(PAH) is a rare disease leading to right ventricular failure and premature death, if not treated appropriately. The most prevalent symptoms of PAH such as shortness of breath with exertion and fatigue cause limited physical function and may impact on the quality of life (QoL) among patients with PAH. However, no studies have been conducted to measure the QoL of patients with PAH in Korea. The purpose of this study was to determine the factors affecting the QoL of patients with PAH.
The first step is translating the LPH(The Living with pulmonary questionnaire) and modifying it through qualitative research and cognitive interviews. The modified LPH tool was applied to 76 subjects, both the validity and the reliability were tested. In the second step, the quality of life and the related factors were analyzed. Total 138 patients who visited a PAH outpatient clinic in Seoul, Korea from April 5 to May 31, 2017 participated in this study. QoL was measured by Medical Outcomes Survey Short Form-12(SF-12) and Korean version LPH., physical function by the Korean activity scale index (KASI). symptoms by the pulmonary artery hypertension symptom interference scale (PAHSS) and anxiety by State Anxiety Inventory(SAI). Multiple regression analyses were performed to analyze
the relationship between the factors and QoL.
1. The Korean version of the LPH is consisted of 28 items' in 6 point Likert scale.
According to the exploratory factor analysis result, it was classified into the physical domain (13 items), the emotional domain (8 items), the sub-symptom domain (4 items) and others (3 items).
2. The reliability of the Korean version of the LPH tool turned out to be Cronbach's alpha =.96. It's significant correlation with the SF-12(r=-.862, p<.001), VAS(r=-.775, p<.001), physical function(r=-.862, p<.001), WHO functional class(r=-.862, p<.001) proved its criterion-related validity.
3. The average of general health-related quality of life measured by SF-12 was 61.97±20.05, the average of VAS was 59.73±20.64, and the average of disease-specific health-related quality of life measured by the Korean version of LPH was 59.10±33.41.
4. QoL was likely to be higher in patients more educated, holding jobs, doing exercise, with lower right ventricular systolic pressure. And the significant correlations were found among QoL and physical function (p<.001), symptoms (p<.001), depression (p<.001), anxiety (p<.001), and social support (p<.001).
5. The final model for general health related QoL of the patients with PAH was significantly associated with physical function(p<.001), symptoms(p<.024), and anxiety(p<.001), explaining 79.7%. Conclusions
6. The final model for disease-specific health related quality of life of the patients with PAH was significantly associated with physical function(p<.001), symptoms(p<.001), and anxiety(p<.008), explaining 83.3%.
This study suggests that an interventional approach to improve physical function, symptoms, and anxiety is needed for the Patients with PAH.
Key words: Pulmonary artery hypertension, Quality of life, Physical function, Symptom, Anxiety
영문요약
Factors Affecting the Quality of life among the Patients with Pulmonary Artery Hypertension
Kim, Jae Hee Department of nursing The Graduate School Yonsei University
1. Introduction
PAH (Pulmonary Artery Hypertension) is a fatal disease that patients end up dying due to right-sided heart failure as the inside area of pulmonary artery is narrowed down, while pressure increases due to pathological alteration of pulmonary artery (Sobanski, Launay, Hachulla, & Humbert, 2016). PAH is relevant to a rare disease that only 15 to 50 people out of one million population suffer from them. In the beginning of the 1980s, PAH has become a major concern as national registration business was proceeded as a rare disease in America (Corciova & Arsenescu-Georgescu, 2012). Rare is diversely defined in each country.
In Korea, it is used in equivalent terms with 'rare and intractable disease' and also defined when the number of population suffering from the disease is less than 20 thousand (Korea Centers for Disease Control and Prevention, 2017). Rare and intractable disease is in the meaning that combines 'rarity' of disease when compared with general diseases and 'intractability' for difficulty on the treatment (Hoyoung Choi, 2016). Therefore, it is defined as a social disease that is difficult to meet patients and their family members and diagnose conditions, chronic, hard
to expect full recovery, and also entails much economic, mental, and domestic burden along with physical pain on patients due to high expenses even though there are treatments available to use (Minyoung Lee & Minhwa Yoon, 2010).
As for such rare and intractable diseases, government has started expanding the medical expenses supporting business from 2012 and operating the rare and intractable disease help-line (www.helpline.nih.go.kr) to provide information.
However, psychological and social support has been evaluated to be insufficient compared to various demands of patients suffering from rare and intractable diseases (Hyunhee Lee, 2012). In addition, as for rare and intractable diseases, treatment medicines have been less developed due to low profitability. In the perspective of research, it is difficult to find subjects along with low efficiency in the utilization of results. Therefore, due to less related researches compared to other diseases, it has been called as 'loner' in the field of medical system (Hoyoung Choi, 2016).
The number of PAH patients suffering from rare and intractable diseases is estimated to be about 5000 in Korea. However, there has not been accurate statistics for the prevalence and survival rate (Chung et al., 2015). However, related researches are limited to the pathological physiology on diseases and verification of effects from treatment drugs, while domestic researches in dealing with the quality of lives of PAH patients and psychological/social issues have not been confirmed. Therefore, they are regarded to be in a blind spot in the field of medicine and health in Korea.
As for prevalence of PAH, average age turned out to be 45.3, and 71.5% of female patients were known to have average survival period as 2.8 years if they were not to be treated (Orem, 2017). 3 years-survival rate constituted 48% without specific treatment up to 10 years ago. However, as the targeted agent has recently been developed, survival rate was extended (Orem, 2017). According to the
research by Benza et al. (2012), 3-years survival rate constituted 68%. In the study by Escrbano et al. (2012), it was 75%. 3 years-survival rate in the recent studies turned out to be 84.4% (Chung et al., 2015). However, after targeted agents were developed, 5 years-survival rate turned out to be as low from 50 to 60%.
Therefore, it is still classified into a fatal disease (Chung et al., 2015).
Causes of PAH have not been clearly revealed. However, it is known to be idiopathic as it mostly occurs on young women without particular causes or to occur as secondary phase due to connective tissue disease, congenital heart disease, other diseases, and drug toxin (Harari, 2016). PAH occurs due to the narrowed artery and vascular resistance due to proliferation from endothelium, smooth muscle layer, and adventitial layer, and hyperplasia and muscularization (Harari, 2016). In the beginning, pulmonary artery pressure starts increasing followed by an increase in pressure on right ventricle, right heart failure, difficulty in breathing, edema, fatigue, arrhythmia, and faint (Vonk Noordegraaf, Groeneveldt, & Bogaard, 2016). Physical symptoms of PAH are similar with the ones of cardiac insufficiency. However, PAH instantaneously causes ventricular tachycardia or ventricular fibrillation due to the load when blood is released from narrowed pulmonary artery when right ventricle contracts and hence Sudden death on patients. Hereupon, PAH patients tend to experience the anxiety and fear of unexpected death other than difficultly from symptoms from symptoms (Tartavoulle, 2015). In the study by Vanhoof et al., (2014), 32.6% of the PAH patients had depression, and 48% of them turned out to experience anxiety.
Symptoms such as difficulty in breathing and fatigue of PAH tend to limit physical activities on daily lives, and reduced physical functions negatively influence on lives along with depression (Larisch et al., 2014). In addition, low survival rate and Sudden death are lead to the anxiety and fear on death influencing on the quality of lives (Larisch et al., 2014). Life quality model related
to health by Ferrel (Ferrell, Dow, Leigh, Ly, & Gulasekaram, 1995) explains that quality is not dependent upon one particular area but is integrated with physical, psychological, social, and spiritual areas. In order to comprehensively identify the factors related to life quality of PAH patients, it is required to make an approach on various aspects depending on life quality areas.
In the foreign researches in investigating the life quality of patients suffering from cardiac insufficiency with similar symptoms, average score turned out to be 40.7 according to the results of measurement with MLHF(Minnesota Living with Heart failure) (Rajati et al., 2016). However, life quality of PAH patients measured with the same tool (life quality increases with lower values) turned out to be 49.5 (Chen et al., 2011). Therefore, life quality of PAH patients was lower than the one of patient suffering from cardiac insufficiency. In the foreign study comparing the life quality of PAH patients with regular group, score turned out to be 50 in physical and mental areas in the regular group according to the results of measurement with SF-30. Therefore, they represented a similar distribution of scores. However, PAT patients represented significantly lower score distribution compared to the regular group in the physical function and limitation on physical roles (Mathai et al., 2016). In addition, the severer the PAH symptoms were, the more physical activities were limited. Limitation on activity function has caused psychological issues including depression and anxiety and hence lowering the life quality (Matura et al, 2016). Low life quality was correlated with the survival rate in the end. Life quality measured with SF-36 supplemented age, types of disease, and status of heart function in the proportional risk regression model by Cox.
Physical areas and mental areas turned out to influence on survival rate with HR 0.95(CI: 0.92~0.98, p<.009) and HR 0.97(CI: 0.95~0.99, p<.006) (Mathai et al., 2016).
Therefore, importance of life quality has been confirmed.
In order to confirm the life quality of PAH patients in Korea, it is required to
use characteristics of diseases and tools reflected with socio-cultural backgrounds (Youngho Yoon, 2011). However, heath-related life quality tool of PAH patients (LPH, the living with pulmonary questionnaire) has been developed and evaluated by Bonner et al., (2013). Therefore, they have not been verified with PAH patients in Korea. Wisdom et al. (2013) have emphasized that it was important to confirm the constitutional concept of tools and questionnaires through advanced interview with subjects as primary procedures when developing or modifying tools. As for qualitative research of PAH patients, there are studies analyzing the contents posted on the club bulletin board on Internet in foreign countries (Matura, McDonough, Aglietti, Herzog, & Gallant, 2013) and cultural statements recording and analyzing videos for daily lives of PAH patients (Kingman, Hinzmann, Sweet,
& Vachiery, 2014). However, qualitative research through advanced interview has not been confirmed. This study is intended to attempt advanced interview with PAH patients in Korea to modify and supplement life quality measuring tools (LPH) on PAH patients developed in foreign countries.
In order to increase life quality of PAH patients, there is a need to analyze factors that influence on life quality of PAH patients. It is difficult to equivalently apply the life quality related factors in PAH patients to PAH patients in Korea with different socio-cultural backgrounds as they are part of the researches conducted in foreign countries. In addition, most of the studies have been limited to physiological factors and symptoms while analyzing several variables and correlation. Therefore, it is required to proceed work for comprehensively verifying
In order to increase life quality of PAH patients, there is a need to analyze factors that influence on life quality of PAH patients. It is difficult to equivalently apply the life quality related factors in PAH patients to PAH patients in Korea with different socio-cultural backgrounds as they are part of the researches conducted in foreign countries. In addition, most of the studies have been limited to physiological factors and symptoms while analyzing several variables and correlation. Therefore, it is required to proceed work for comprehensively verifying