Decision-Making and Life Quality of Cancer Patients with Hematopoietic Stem cell Transplantation
Date Issued
2004
Date
2004
Author(s)
Kao, Wei-Ching
DOI
zh-TW
Abstract
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.
Subjects
造血幹細胞移植
醫療決策
滿意度
壓力源
生活品質
life quality
satisfaction
Hematopoietic Stem Cell Transplantation (HSCT)
medical decision making
stressor
SDGs
Type
other