胡文郁臺灣大學：護理學研究所高維菁Kao, Wei-ChingWei-ChingKao2007-11-272018-07-072007-11-272018-07-072004http://ntur.lib.ntu.edu.tw//handle/246246/55749本研究目的旨在探討血液腫瘤病患接受造血幹細胞移植之醫療決策經驗和移植後生活品質。收案條件為接受造血幹細胞移植治療出院後存活期超過三個月以上之血液腫瘤病患。採結構式問卷調查法，以郵寄方式進行，採立意取樣，選取某醫學中心接受造血幹細胞移植之成人血液腫瘤病患共178位。 問卷所收集之資料，以SPSS11.0版，進行資料建檔及統計處理分析。重要結果發現如下：（1）血液腫瘤病患接受造血幹細胞移植的醫療決策經驗中，有92﹪參與醫療決策，但最主要的決策者仍是醫師，病患與家屬肯定醫師的專業，認為能做移植是有希望、有重生的機會。（2）移植前對於移植相關健康照護資訊的落差佔12.4﹪~27﹪，認為應告知而未告知的訊息前五項為：移植後對內分泌的影響、可以運用的社會資源、移植後生育問題、移植失敗和復發的可能性和移植後對存活期與生活品質的影響。（3）移植期間病患的壓力源主要來自於對生命與生活的威脅，整體所承受的痛苦分數（5.5±2.1分），以身體方面（6.9±2.3分）與心理方面（6.3±2.6分）的痛苦較高，有63﹪在移植前已做好最壞打算，包括：把握移植前與家人相處時間、交代後事、甚至於已預立遺囑和放棄急救的打算。（4）病患移植後每位病患平均有11±8.1項困擾之症狀，困擾程度為5.3±4.8分；困擾症狀的發生率較高的前五項為：疲倦、眼睛症狀、皮膚症狀、口乾和注意力不集中；困擾程度較嚴重的前五項症狀為：皮膚症狀、疲倦、眼睛症狀、感染和性生活不協調與疼痛。困擾症狀總數與程度不會因移植方式、存活期和時間而有所不同。女性病患在移植後最感困擾的症狀是：月經失調或停經、更年期症狀和性生活問題。（5）病患移植後的生活品質在中等程度以上，平均為7.5±3.6分；以社會支持的得分較高（8.0±5.7分），而靈性存在的得分較低（6.6±2.8分）。其中生活品質最好的前三項為：受到家人關愛、感覺被支持、較少感覺到傷心和難過；最差的三項為：覺得自己的人生活得沒有價值、無法掌握自己的人生、覺得生活沒有意義和目標。（6）病患移植後生活品質的重要影響因素為：移植期間的痛苦程度、移植後症狀困擾程度與經濟的來源不足。（7）移植病患對於治療的滿意度為8.6±1.3分，最滿意的是對於移植治療決策的滿意度9.1±1.4分；最不滿意的是治療對於生活品質提昇的滿意度，2.8﹪對於移植感到後悔；若能重新選擇有7.3﹪表示不會選擇接受移植。 研究結果可以提供臨床醫護人員參考，如何加強病患在決策的過程提供完整且具個別性的衛教資訊，在移植期間減輕病患的痛苦及合併症的發生並能在出院後提供完善的出院規劃，協助病患在移植後減輕症狀困擾、提昇生活品質，進而擁有幸福的人生。此外，亦可提供血液腫瘤患及家屬，在選擇是否接受造血幹細胞移植醫療決策之參考。The purpose of this study is to understand the hematology /oncology patients’ decision-making experiences and the life quality as well as other associated factors during post hematopoietic stem cell transplantation (HSCT). The sample composes of 178 patients from March 2004 to June 2004 with its data collected through the method of self-reporting (i.e. structuralized questionnaire). The questionnaire includes stressors scale，symptom distress scale and life quality scale. All interview data is packaged for SPSS11.0. Results: 1. 92% of the subjects (hematology patients) participate in the decision-making process for the HSCT, but doctors still play the most critical role in the process. The patients and their family members acknowledge the doctor’s competence and believe that the transplant would be another chance and a new hope for the patients to be “reborn”. 2. 12.4% ~ 27% of the subjects feel that there is an inconsistency between the amount of medical information they were given prior to the transplant and the amount of information that they believe is needed to go through the transplant (In other words, these subjects think that they deserve more preparation/transplant-related information than what they were given. ), specifically in the following areas: effects on endocrine after the transplant, available outside social resources, birth issues/problems after the transplant, possibility of unsuccessful transplant or recrudesce of the hematological illnesses and the post-transplant effects on the quality of life. 3. Much of the subjects’ stress during the transplant origins from the threat that they are receiving dealing death and the ability to lead a normal life again. Overall the encountered pain scale is (5.5±2.1), with physical（6.9±2.3）and psychological（6.3±2.6）aspects being the highest; 63% of the subjects has planned for the worst case scenarios, such as spending more time with family before the transplant, taking care personal as well as business matters, some of which even includes setting up and notarizing an official will and the possibility of giving up further attempts to bring back the patient in emergency cases. 4. On average, each subject has 11±8.1 bothersome side-effect symptoms, pain level being 5.3±4.8. The subjects rated the following five symptoms with the most occurrences: easily-tiredness, eye irritations, skin irritations, dry mouth, and inability to focus on things. The subjects also rated the following five symptoms as the most bothersome of all: skin irritation, easily tiredness, eye irritation, infections and uncoordinated sexual life with other uneasiness and painfulness experienced during sexual intercourse. The total occurrences of these symptoms and the level of painfulness do not correlate with the method of transplant or the length of the time the patient has been successfully transplanted. Female subjects have reported unstable menstrual cycle, early menopause symptoms and sex life problems. 5. Living quality for the subjects remain above average after the transplant (7.5±3.6), with the highest rating for societal support （8.0±5.7）and lower rating for spiritual existence (6.6±2.8). Of all aspects of living quality, family encouragement, sense of being supported and feeling not as depressed are the three highest rated aspects, whereas the feeling of uselessness, inability to control one’s own life and lack of direction in seeking the purpose and goal in life serve as the three most negatively rated aspects. 6. Important factors of the subjects’ living quality include the level of painfulness experienced during the transplant, side-effects experienced after the transplant and financial concern. 7. Subjects’ satisfaction for the treatment has been rated as 8.6±1.3, with the decision to accept the transplant as most highly satisfied (9.1±1.4) and the living quality after the transplant being the least satisfied aspect. 2.8% of the subjects show regret for the transplant, and 7.8% of them would not agree to the transplant if they have the chance to choose again. The results section of this study serves as a reference guide for the nursing crew, in terms of how to better support patients during the decision making process, and completely, also, accurately provide patients with individual HSCT-related information prior to the transplant. In addition, these results should help the nurses to better understand how to leaven patients’ level of painfulness as well as reducing the amount of possible side effects from taking place, helping them to receive better life-long planning to again, decrease the pain and increase the life quality of these patients. Moreover, this study could also act as a reference for future hematology patients and their families in making decisions concerning HSCT.目 錄 頁數 致謝………….………..…………….………………………..…….…..…Ⅰ 中文摘要………….………………………………..…………………..…Ⅲ 英文摘要………….………………………………..…………………..…Ⅴ 目錄………….………………………………..…………….…………..…Ⅷ 圖表目錄………….…………………….………………………………..ⅩⅠ 第壹章 緒論 第一節 研究背景與重要性.…………………………….……………..1 第二節 研究目的………………………………….…..………………6 第三節 研究架構... ……………………………………..…………….7 第四節 名詞界定……………...………………………..……………..9 第貳章 文獻查證 第一節 造血幹細胞移植……………………………………………..11 第二節 醫療決策……………………………………..………………14 第三節 骨髓移植與生活品質……………….…….…………………22 第四節 治療滿意度……………………………..………………….…37 第參章 研究方法 第一節 研究設計…….…………………………………………..…...40 第二節 研究對象與場所……………………………………………..41 第三節 研究工具….………………………………………………….42 第四節 研究工具信效度檢定…………………………………..…...44 第五節 資料收集步驟….……….……………….…………………..47 第六節 倫理關注….…………………………….…………..…….....48 第七節 資料分析方法………………………………..………...…....49 第肆章 結果 第一節 造血幹細胞移植病患基本資料………………………..……...51 第二節 接受造血幹細胞移植病患之醫療決策經驗……………….....54 第三節 病患接受造血幹細胞移植期間痛苦程度與移植後之症狀困擾與生活品質…………………………………………………….59 第四節 病患接受造血幹細胞移植後對移植治療的滿意度、看法及重新選擇治療的意願……………………………………..…………61 第五節 移植後生活品質之重要影響因素……….…………..………..63 第六節 影響移植後治療滿意度和重新選擇之重要預測因子……….64 第伍章 討論 第一節 移植病患醫療決策之自主性與壓力源………………..……...65 第二節 移植病患與捐贈者對移植相關資訊的瞭解落差……………..68 第三節 病患接受造血幹細胞移植後之生活品質與重要影響因素..…..70 第四節 移植病患對於造血幹細胞移植治療的滿意度……..…………72 第五節 病患對於重新選擇治療的意願……….……………..………...73 第陸章 結論與建議 第一節 結論……………………………………………………..………74 第二節 護理應用與建議…………………………………………..……77 第三節 研究限制與未來研究之建議…………………………….……79 參考資料 中文部分………………………………………………………………80 英文部分………………………………………………………………80 附錄 附件一、決策與決定的定義……………………………………84 附件二、半結構式訪談指引……………………………………85 附件三、研究問卷………………………………………………86 附件四、內容效度專家名單…………………………………………97 附件五、收案機構研究倫理委員會審查同意函……………………98 圖表目錄 頁數 圖1研究概念架構…….………..…………….………………………..…8 圖2修正後之概念架構….………………………………..…………..…76 表一、 造血幹細胞移植病患基本資料…………………..…………..…99 表二、造血幹細胞移植病患之疾病與治療狀況……………..………….101 表三、異體親屬造血幹細胞移植病患捐贈者之基本資料………..…….103 表四、病患接受造血幹細胞移植時健康照護需求量表之因素分析結果.104 表五、病患接受造血幹細胞移植時健康照護訊息告知之落差…..…….105 表六、病患接受造血幹細胞移植前健康照護訊息之需求……………….106 表七、病患過去接受造血幹細胞移植之醫療決策經驗……..………….107 表八、造血幹細胞移植病患醫療決策參與者之影響力………………….109 表九、造血幹細胞移植病患移植前之壓力源………..………………….110 表十、造血幹細胞移植病患醫療決策壓力源量表之因素分析….…….111 表十一、造血幹細胞移植病患醫療決策壓力源各項平均得分…………112 表十二、造血幹細胞移植病患移植期間身、心、社會和靈性痛苦程度113 表十三、造血幹細胞移植病患身體困擾症狀之發生率與困擾程度……114 表十四、造血幹細胞移植病患生活品質量表之因素分析…..…….……115表十五、造血幹細胞移植病患生活品質各項得分情形.…..……………116 表十六、病患對造血幹細胞移植治療之滿意度….………..……………118表十七、造血幹細胞移植病患對移植治療之看法與選擇…..…………119 表十八、研究對象人口學特性、疾病與治療方式、醫療滿意度與生活品質之變異數分析……………………………………………………….….122 表十九、治療期間痛苦、症狀困擾、生活品質與治療滿意度相關因素之積差相關分析………………………………………………….124 表二十、研究對象對移植治療滿意度量表、生活品質量表之多變項回歸分析………………………………………………………….…125 表二十一、病患選擇接受造血幹細胞移植治療意願之Logistic回歸分析………………………………………………………………..126 附表1、問卷收案情形……………………………………………………127 附表2、比較造血幹細胞移植病患男性與女性身體困擾的發生率與困擾度………………………………………………………………128 附表3、比較男性和女性造血幹細胞移植病患移植後之生活品質….129en-US造血幹細胞移植醫療決策滿意度壓力源生活品質life qualitysatisfactionHematopoietic Stem Cell Transplantation (HSCT)medical decision makingstressor[SDGs]SDG3other