造血幹細胞移植後兒童及其主要照顧者之生活品質及其相關因素之探討

Abstract

近年來造血幹細胞移植的技術不斷精進，死亡率下降，將來會有愈來愈多的兒童接受造血幹細胞移植，然而接受造血幹細胞移植對於兒童及其家庭的生活品質均造成相當大的衝擊，如何讓兒童及其主要照顧者的生活品質正常化乃是一重要的課題。故本研究主要目的在於探討兒童接受造血幹細胞移植後，與其主要照顧者之生活品質，與”兒童身體症狀困擾”及”兒童和主要照顧者生活品質”之相關性。研究設計採橫斷式描述性研究，使用結構式問卷，分為兒童及主要照顧者兩部分；兒童的問卷包括：兒童基本屬性資料表，癌症兒童生活品質量表（QOLCC）及身體症狀困擾量表；主要照顧者的問卷採台灣簡明版世界衛生組織生活品質問卷（WHOQOL－BREF）。以立意取樣法，研究對象為現年7歲以上，20歲以下於兒童時期曾於台北某教學醫院接受造血幹細胞移植後11年內之兒童及其主要照顧者，收案期間自2008年11月15日至2009年2月28日，共有37位兒童及其主要照顧者參與。研究資料經譯碼建檔後，以SPSS 13.0 for windows套裝軟體進行資料的統計分析。研究結果主要發現如下： 一、 兒童之生活品質： 1. 兒童接受造血幹細胞移植後於生理功能之生活品質較好，得分為2.70±3.81，於認知功能之生活品質較差，得分為4.35±4.11。 2. 移植後時間（距移植日的時間）大於6個月之兒童於身體症狀困擾項目較移植後小於6個月之兒童少，且於生理功能、心理功能、疾病症狀功能分量表及總量表之生活品質較好；兒童休學中在生理功能、社會功能及總量表之生活品質較就學中或在家教育者差；兒童完全停藥於生理功能方面之生活品質較定期服藥者好；兒童主要照顧者為母親於生理功能、心理功能及總量表之生活品質較非母親照顧者好；兒童移植後時間（距移植日的時間）愈短且就診頻率愈多（頻繁）者生理功能之生活品質則較差。 二、 主要照顧者之生活品質： 1. 兒童主要照顧者於生理健康範疇之生活品質較好，得分為15.18±1.95，心理範疇之生活品質較差得分為13.39±2.33。 2. 就診頻率方面：每月就診次數愈多（頻繁），主要照顧者於心理範疇、社會範疇之生活品質愈差。 3. 兒童身體症狀困擾方面：兒童味覺改變之症狀困擾愈嚴重者，主要照顧者於生理健康範疇及心理範疇之生活品質愈差，疼痛症狀困擾愈嚴重者，主要照顧者於生理健康範疇、心理範疇及整體之生活品質愈差。 4. 主要照顧者基本屬性資料：教育程度為專科/大學（含以上者）者較國中/高中職（含以下）之整體生活品質高。若主要照顧者本身罹患疾病者，其生活品質於生理健康範疇、社會關係範疇及整體生活品質較無罹患疾病者差。 5. 兒童接受造血幹細胞移植後之整體生活品質與主要照顧者之整體生活品質呈正相關，兒童生活品質愈好則主要照顧者生活品質愈好。 本研究結果顯示接受造血幹細胞移植後之兒童及其主要照顧者，需要護理人員長期追蹤並適時提供護理指導與關懷，並可提供修訂護理指導工具及出院追蹤之參考，期望造血幹細胞移植的兒童及其主要照顧者能獲得妥善的照護，並享有更好的生活品質。

More and more children have gone through hematopoietic stem cell transplantation (HSCT) to treat their diseases, and thanks to the advancement of technology and practice of HSTC, mortality rates of Children have greatly decreased in recent years. However, the negative impacts of post HSCT on children and their families’ quality of life are tremendous. How to help patients recover not only from the disease but physically, socially and psychologically after the treatment is imperative. It is equally important to help children and their primary caregiver lives return normal sooner. The purpose of this study is to understand the quality of life and its related factors in children post HSCT and their primary caregivers. This research was designed as a cross-sectional study with structured questionnaire, and the data were collected by purposive sampling. The questionnaire was divided into two parts: the children post HSCT and their primary caregivers. There are three main categories in the part of the children post HSCT- (1) General information, (2) Quality Of Life for Children with Cancer (QOLCC), and (3) Physical Symptoms scales. The other part of the questionnaire for the primary caregivers is adopted from WHOQOL-BREF. From November 15, 2008, to February 28, 2009, 37 post-HSCT children/ caregiver pairs within 11 years of HSCT were recruited from a medical center in Taipei, Taiwan. Age of children ranged from 7 to 20, and the data were analyzed by the software SPSS 13.0 for windows. The major findings are as below: 1. Quality of life in Children： (1) They got the best quality of life in Physical Scale Domain (average score 2.70±3.81), and the worst in Cognitive Problem Module Domain (average score 4.35±4.11) among the six domains of QOLCC scale. (2) The quality of life of children transplanted prior to six months ago was better than those transplanted within six months in terms of Physical Scale, Psychological Scale, Disease and Treatment-Related Symptoms/Problems domains on the scale sheet of QOLCC. Children’s overall quality of life was worse for those suspended from school than those either returned to school or home-schooled themselves in the domains of Physical Scale and Social Scale. Children who had been off medications were found to have better quality of life than whom were still on regular medications. If their mothers were primary caregivers, they owned a superior overall quality of life in the domains of Physical Scale and Psychological Scale. The shorter period of post-transplant and higher frequency of clinic visits were associated with the worse quality of life in the domain of physical Scale. 2. Quality of life of the primary caregivers： (1) They got the best score (15.18±1.95) in the domain of Physical Domain, and the worst score (13.39±2.33) in the Psychological Domain. (2) The frequency of clinic visits lowered the quality of life in the Psychological and Social Relation Domain. (3) In terms of patients’ bothersome physical symptoms, the severity of parageusia was reversely correlated with the primary caregivers’ quality of life in the Physical Domain and Psychological Domain. Similarly, the severity of pain was harmful for the primary caregivers’ quality of life in the physical, Psychological Domain and overall scores of quality of life (total QOL), too. (4) For higher-educated primary caregivers with bachelor degree or above, they had better quality of life. We also find that primary caregivers’ health status influence the quality of life, eg, diseased primary caregivers had impaired quality of life in the Physical Domain, Social Relation Domain and overall quality of life. (5) The children’s and their primary caregivers’ quality of life disclosed a positive correlation significantly in all Domains. The results of this study pointed out that children and their primary caregivers were demanded for further information and nursing, and they should be followed indefinitely. As we knew more about the physical symptoms of children, it is helpful to amend nursing instructions. We hope that children and their primary caregivers will obtain a continuous and comprehensive nursing care and improve their quality of life in the future.