【摘要】：研究背景急性淋巴細(xì)胞性白血病(Acute Lymphoblastic Leukemia,ALL)是兒童期最常見的惡性腫瘤,其高發(fā)年齡為2-4歲,由于患兒年齡較小,認(rèn)知和自護(hù)能力有限,其照護(hù)主要由父母作為照顧者來進(jìn)行。ALL患兒父母承擔(dān)諸多患兒照護(hù)責(zé)任,缺乏疾病知識和照護(hù)經(jīng)驗(yàn),因此存在多方面的支持性照護(hù)需求,亟需專業(yè)可及的指導(dǎo)、支持和干預(yù)。移動(dòng)醫(yī)療在慢性病自我管理、健康促進(jìn),提高治療依從性等衛(wèi)生保健方面具有積極的推動(dòng)作用。智能手機(jī)上安裝的第三方應(yīng)用程序也因其便捷性、實(shí)時(shí)性、可及性及互動(dòng)性等優(yōu)勢,成為近年來移動(dòng)醫(yī)療發(fā)展的重要技術(shù)手段,逐漸開始應(yīng)用于醫(yī)療照護(hù)領(lǐng)域。課題組前期與美國華盛頓國立兒童醫(yī)學(xué)中心科研團(tuán)隊(duì)共同合作,在上海市科學(xué)技術(shù)委員會(huì)政府間國際合作課題的資助下,引入“移動(dòng)醫(yī)療”新理念,結(jié)合ALL患兒父母需求的內(nèi)容與規(guī)律,研發(fā)了適用于Android系統(tǒng)的“白血病健康管理智能手機(jī)應(yīng)用程序”。鑒于此,如何構(gòu)建以應(yīng)用程序?yàn)楹诵牡募毙粤馨图?xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案,并開展臨床應(yīng)用及其效果評價(jià)是亟需解決的重要研究問題。目的1、構(gòu)建急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案;2、開展急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的有效性評價(jià)。方法1、急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建(1)主要干預(yù)工具“白血病健康管理智能手機(jī)應(yīng)用程序”的可用性評價(jià)1)可用性及其評價(jià)方法學(xué)文獻(xiàn)研究:對國內(nèi)外文獻(xiàn)進(jìn)行檢索,分析“可用性”的概念形成及發(fā)展、概念涉及的相關(guān)屬性、可用性評價(jià)常用方法、評價(jià)工具等。2)癌癥相關(guān)移動(dòng)醫(yī)療應(yīng)用程序可用性評價(jià)的概括綜述(Scoping Review):嚴(yán)格遵循Arksey和O’Malley提出的五步法(確立研究問題,確定相關(guān)研究,文獻(xiàn)篩選,提取數(shù)據(jù),收集、總結(jié)、報(bào)告研究結(jié)果)對2000.1至2013.12的癌癥相關(guān)移動(dòng)醫(yī)療應(yīng)用程序可用性評價(jià)的文獻(xiàn)進(jìn)行檢索和篩選,對納入文獻(xiàn)進(jìn)行概括綜述。3)應(yīng)用程序可用性評價(jià):采用混合研究方法,先后納入醫(yī)護(hù)人員和ALL患兒父母對應(yīng)用程序的可用性進(jìn)行評價(jià),通過質(zhì)性訪談了解研究對象對應(yīng)用程序的使用感受;并通過后臺收集ALL患兒父母對應(yīng)用程序健康宣教相關(guān)3個(gè)模塊使用情況數(shù)據(jù),結(jié)合質(zhì)性和量性數(shù)據(jù)對應(yīng)用程序的可用性進(jìn)行評價(jià)。(2)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建1)基于智能手機(jī)應(yīng)用程序的癌癥相關(guān)移動(dòng)醫(yī)療干預(yù)的概括綜述(Scoping Review):遵循Arksey和O’Malley提出的五步法,對2000.1至2014.12的國內(nèi)外癌癥相關(guān)基于智能手機(jī)應(yīng)用程序的移動(dòng)醫(yī)療干預(yù)進(jìn)行檢索和篩選,對納入文獻(xiàn)進(jìn)行概括綜述。2)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建:結(jié)合文獻(xiàn)研究結(jié)果、應(yīng)用程序的可用性評價(jià)結(jié)果和本課題研究對象的實(shí)際情況,構(gòu)建急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案。3)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的優(yōu)化:邀請專家進(jìn)行專家工作會(huì)議,討論初步構(gòu)建的方案,根據(jù)專家意見進(jìn)行修改和優(yōu)化,形成急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案。2、急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的有效性評價(jià)為盡量減少干預(yù)組與對照組研究對象間的沾染,本研究首先在上海市兒童醫(yī)學(xué)中心、蘇州大學(xué)附屬兒童醫(yī)院中招募對照組ALL患兒父母進(jìn)行基線調(diào)查,3個(gè)月后對對照組研究對象進(jìn)行第二次調(diào)查。待對照組所有患兒父母間隔3個(gè)月的2次調(diào)查均結(jié)束后,再在病區(qū)內(nèi)招募干預(yù)組研究對象。對干預(yù)組ALL患兒父母進(jìn)行與對照組相同的基線調(diào)查,后按制定的“急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案”實(shí)施干預(yù),干預(yù)實(shí)施3個(gè)月后對干預(yù)組患兒父母進(jìn)行第二次調(diào)查。分析量性數(shù)據(jù)來評價(jià)該方案對于ALL患兒父母在社會(huì)支持、焦慮、抑郁、照顧負(fù)擔(dān)、疾病不確定感、生活質(zhì)量、疾病和照護(hù)相關(guān)知識的了解和需求程度的影響,并進(jìn)行質(zhì)性訪談了解干預(yù)組患兒父母接受干預(yù)的感受。結(jié)果1、急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建(1)主要干預(yù)工具“白血病健康管理智能手機(jī)應(yīng)用程序”的可用性評價(jià)1)可用性及其評價(jià)方法學(xué)文獻(xiàn)研究:對可用性的概念形成及發(fā)展、概念涉及的相關(guān)屬性、可用性評價(jià)常用方法、評價(jià)工具進(jìn)行了分析。2)癌癥相關(guān)移動(dòng)醫(yī)療應(yīng)用程序可用性評價(jià)的概括綜述(Scoping Review):共檢索到文獻(xiàn)7178篇,最終納入全文文獻(xiàn)10篇和無全文的會(huì)議摘要6篇,發(fā)表時(shí)間為2007至2013年。對納入文獻(xiàn)中應(yīng)用程序所針對的癌癥種類、可用性評價(jià)的研究設(shè)計(jì)、研究對象、持續(xù)時(shí)間、評價(jià)方法、評價(jià)的可用性要素等進(jìn)行了分析。3)應(yīng)用程序可用性評價(jià):可用性評價(jià)期間未出現(xiàn)應(yīng)用程序故障,研究對象配合度高,均全程參與可用性評價(jià)。醫(yī)護(hù)人員和患兒父母認(rèn)為應(yīng)用程序具有可理解性、易學(xué)性、易用性、有效性和滿意性的特點(diǎn),可用性良好�；純焊改副硎驹敢饫^續(xù)使用應(yīng)用程序輔助其照護(hù)患兒。應(yīng)用程序可作為為ALL患兒父母提供支持的移動(dòng)醫(yī)療工具,并有助于促進(jìn)ALL患兒父母為患兒提供高質(zhì)量照護(hù)。(2)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建1)基于智能手機(jī)應(yīng)用程序的癌癥相關(guān)移動(dòng)醫(yī)療干預(yù)的概括綜述(Scoping Review):共檢索到文獻(xiàn)8088篇,最終納入基于智能手機(jī)應(yīng)用程序的癌癥相關(guān)移動(dòng)醫(yī)療干預(yù)研究5篇,其中3篇為研究計(jì)劃,發(fā)表時(shí)間為2009至2014年。對納入的研究所用應(yīng)用程序、研究設(shè)計(jì)、干預(yù)對象、樣本量、研究方法、干預(yù)時(shí)間、結(jié)果評價(jià)、研究結(jié)果和結(jié)論進(jìn)行了分析。2)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的構(gòu)建:初步構(gòu)建的急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案包括應(yīng)用程序使用指南、干預(yù)方案、評價(jià)體系及后臺管理方案。3)急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的優(yōu)化:通過專家工作會(huì)議對方案進(jìn)行修訂,最終形成了以應(yīng)用程序和微信公眾平臺為主要干預(yù)要素的干預(yù)方案,并配以應(yīng)用程序使用指南、評價(jià)體系和基于網(wǎng)頁的后臺管理方案的急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案。2、急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案的有效性評價(jià)于2015.6在上海兒童醫(yī)學(xué)中心和蘇州兒童醫(yī)院招募對照組ALL患兒父母50例,3個(gè)月后43名患兒父母完成前后兩次的調(diào)查。后招募51名ALL患兒父母入干預(yù)組,49名患兒父母全程參與了持續(xù)3個(gè)月的干預(yù)。兩組在研究前后兩次調(diào)查數(shù)據(jù)差值比較結(jié)果顯示,相比對照組患兒父母,干預(yù)組患兒父母焦慮減輕(P=0.030),疾病不確定感減輕(P=0.007),社會(huì)功能(P=0.014)提高,對疾病和照護(hù)相關(guān)知識的了解程度提高(P=0.000),對疾病和照護(hù)相關(guān)知識的需求程度降低(P=0.000)。質(zhì)性訪談結(jié)果顯示干預(yù)組患兒父母對整個(gè)干預(yù)反應(yīng)良好,整體照護(hù)滿意度良好。結(jié)論1、本課題關(guān)于癌癥相關(guān)移動(dòng)醫(yī)療應(yīng)用程序可用性評價(jià)和基于智能手機(jī)應(yīng)用程序的癌癥相關(guān)移動(dòng)醫(yī)療干預(yù)的概括綜述全面回顧了相關(guān)文獻(xiàn),突顯了本課題在癌癥移動(dòng)醫(yī)療領(lǐng)域內(nèi)的先進(jìn)性,同時(shí)也為本課題構(gòu)建移動(dòng)醫(yī)療支持性照護(hù)方案及后續(xù)開展移動(dòng)醫(yī)療領(lǐng)域內(nèi)相關(guān)研究提供了極高的參考和指導(dǎo)價(jià)值。2、課題組前期構(gòu)建的應(yīng)用程序的可用性良好,具有可理解性、易學(xué)性、易用性、有效性和滿意性的特點(diǎn),可作為為ALL患兒父母提供支持的移動(dòng)醫(yī)療工具,并有助于促進(jìn)ALL患兒父母為患兒提供高質(zhì)量照護(hù)。3、本課題構(gòu)建了“急性淋巴細(xì)胞性白血病患兒父母移動(dòng)醫(yī)療支持性照護(hù)方案”,并通過分組實(shí)驗(yàn)證實(shí)了該方案的有效性,減輕了ALL患兒父母焦慮和疾病不確定感,提升了其社會(huì)功能,提高了患兒父母對疾病和照護(hù)相關(guān)知識的了解程度,降低了對疾病和照護(hù)相關(guān)知識的需求程度,ALL患兒父母對整個(gè)干預(yù)反應(yīng)良好。本課題對移動(dòng)醫(yī)療在癌癥患兒父母支持性照護(hù)干預(yù)中的應(yīng)用與發(fā)展具有借鑒和參考價(jià)值。
[Abstract]:Background Acute Lymphoblastic Leukemia (ALL) is the most common malignant tumor in childhood. Its high incidence age is 2-4 years old. Due to the younger age and limited ability of cognition and self-care, the care of the children is mainly taken by parents as caregivers to undertake many children's care responsibility and lack of disease in children with.ALL. Knowledge and care experience, so there are many supportive care needs, and there is an urgent need for professional and effective guidance, support and intervention. Mobile medical care has a positive impact on health care such as chronic disease self management, health promotion, and improvement of treatment compliance. The third party applications installed on the smartphone are also convenient because of their convenience. As an important technical means of mobile medical development in recent years, it has gradually begun to apply to the field of medical care. The project group co operated with the research team of the National Center for children's medicine in Washington, D.C., and introduced in the support of the intergovernmental international cooperation project of the Shanghai Committee of science and technology. The new concept of mobile medical treatment, combined with the contents and rules of the parents' needs of ALL children, developed a "smart phone application for leukemia health management" for the Android system. In view of this, how to construct a mobile medical supportive care program for children with acute lymphoblastic leukemia at the core of the application and to carry out clinical practice Application and effect evaluation is an important research problem which needs to be solved urgently. Objective 1, construction of parental mobile medical supportive care scheme for children with acute lymphoblastic leukemia. 2, the effectiveness evaluation of parental mobile medical supportive care scheme for children with acute lymphoblastic leukemia. Method 1, children with acute lymphoblastic leukemia. Construction of parental mobile medical supportive care scheme (1) the availability evaluation of the main intervention tool "leukemia health management smart phone application" 1) availability and evaluation methodology: retrieval of domestic and foreign literature, analysis of the concept formation and development of "usability", related attributes and availability of concepts. Evaluation of common methods, evaluation tools, etc..2) a summary of the usability evaluation of cancer related mobile medical applications (Scoping Review): strictly follow the five step method proposed by Arksey and O 'Malley (establishing research problems, determining related research, literature screening, extracting data, collecting, summarizing, and reporting research results) on the cancer phase of 2000.1 to 2013.12 Search and screen the usability evaluation of mobile medical applications, summarize the availability of.3) application evaluation: a mixed study method is used to evaluate the usability of the application program by medical staff and parents of ALL children, and to understand the application program by qualitative interview. Use the feeling; and collect the data of the application of the 3 modules of the ALL children's parents to the application health education through the background, and evaluate the usability of the application with the qualitative and quantitative data. (2) the construction of the parental mobile medical support scheme for the children with acute lymphoblastic leukemia (1) based on the Smartphone Application A summary of cancer related mobile medical interventions (Scoping Review): following the five step method proposed by Arksey and O 'Malley, retrieval and screening of mobile medical intervention based on smart phone applications for 2000.1 to 2014.12 cancers at home and abroad, and a summary review of the literature,.2) children with acute lymphoblastic leukemia The construction of parental mobile medical supportive care scheme: combined with the results of literature study, the results of usability evaluation of the application and the actual situation of this subject, the construction of parental mobile medical support care scheme for acute lymphoblastic leukemia children.3) parents mobile medical support for acute lymphoblastic leukemia children The optimization of the care scheme: inviting experts to meet the expert working meeting, discussing the preliminary construction plan, modifying and optimizing according to the expert opinion, forming the parents mobile medical supportive care program.2 for the children with acute lymphoblastic leukemia, the effectiveness of the parental mobile medical support care scheme for acute lymphoblastic leukemia patients. In order to minimize the contamination between the subjects of the intervention group and the control group, the study first took the baseline survey of the parents of the control group of ALL children recruited from the Shanghai children's medical center and the Children's Hospital Affiliated to Suzhou University in the control group. After 3 months, the subjects of the control group were examined second times. The parents of all children in the control group were between 3 months and 2 months. The same baseline survey was carried out between the parents of the ALL children in the intervention group and the control group, and the intervention was carried out according to the parents mobile medical support care scheme for children with acute lymphoblastic leukemia. After 3 months of intervention, the parents of the intervention group were second. Analysis of quantitative data to evaluate the impact of the scheme on the parents of ALL children in social support, anxiety, depression, care burden, disease uncertainty, quality of life, knowledge of disease and care related knowledge and demand, and to conduct qualitative interviews to understand the feelings of parents in the intervention group. Results 1, acute lymphocytes. The construction of parental mobile medical support care scheme for children with sexual leukemia (1) the availability evaluation of the main intervention tool "leukemia health management smart phone application" 1) availability and evaluation methodology literature research: concept formation and development of usability, related attributes involved in concept, common methods of usability evaluation, and evaluation of usability An overview of the usability evaluation of cancer related mobile medical applications (Scoping Review): a total of 7178 articles were retrieved, and 6 of the 10 and no full text summaries were included, and the publication time was 2007 to 2013. The availability evaluation of the types of cancer in the literature included in the literature. Research design, research object, duration, evaluation method, availability factors of evaluation, etc..3 application usability evaluation: no application failure during usability evaluation, high coordination of research objects, all participation evaluation. Medical and child parents think the application is understandable, The parents expressed their willingness to continue to use the application program to assist the care of the children. The application can be used as a mobile medical tool to support the parents of ALL children and to help the parents of ALL children to provide high quality care for the children. (2) acute lymphoblastic sex The construction of a mobile medical supportive care scheme for children with leukemia 1) a summary of cancer related mobile medical interventions based on smart phone applications (Scoping Review): a total of 8088 papers were retrieved, and 5 cancer related mobile medical intervention studies based on smart phone applications were included, of which 3 were the research programs. The time of publication was 2009 to 2014. The application program, research design, object of intervention, sample size, research methods, intervention time, result evaluation, results and conclusions were analyzed in.2) the construction of parental mobile care plan for children with acute lymphoblastic leukemia: initial construction of acute lymphoblastic cells. Parents mobile medical supportive care programs for children with sexual leukemia include application guidelines, intervention programs, evaluation system and backstage management scheme.3) the optimization of parental mobile medical support care scheme for children with acute lymphoblastic leukemia: the program is revised through expert meeting, and the application program is finally formed. The intervention program with the WeChat public platform as the main intervention element, with the application guide, the evaluation system and the backstage management scheme based on the web page, the parents mobile medical support care program.2 for the children with acute lymphoblastic leukemia, and the parents mobile medical support care scheme for the children with acute lymphoblastic leukemic disease. The effectiveness evaluation was conducted in 2015.6 children's parents of ALL in Shanghai Children's Medical Center and Suzhou children's Hospital, 50 parents were recruited in the control group, and two times before and after completion of 43 children's parents were completed in 3 months. 51 parents of children with ALL were recruited into the intervention group, and 49 children were involved in the last 3 months' intervention. The two groups were investigated and two times before and after the study. The difference results showed that the parents of the children of the control group were less anxious (P=0.030), the disease uncertainty (P=0.007), the social function (P=0.014), the knowledge of disease and care related knowledge increased (P=0.000), the degree of demand for disease and care related knowledge was reduced (P=0.000). Qualitative interview results were found. The results showed that the parents of the intervention group responded well to the whole intervention and had a good overall care satisfaction. Conclusion 1. A comprehensive review of the usability evaluation of cancer related mobile medical applications and the cancer related mobile medical intervention based on the Smartphone Application is a comprehensive review of the related literature, which highlights the movement of this subject in cancer movement. The advanced nature in the medical field also provides a very high reference and guidance value.2 for the construction of mobile medical support care scheme and subsequent mobile medical field, which has good usability, comprehensible, easy to use, usability, effectiveness and satisfaction. It can be used as a mobile medical tool to support the parents of ALL children, and helps to promote the parents of children of ALL to provide high quality care for children with.3. This project has constructed a "parental mobile medical supportive care program for children with acute lymphoblastic leukemia", and confirmed the effectiveness of the scheme by grouping experiments and alleviated the ALL suffering. Children's parents' anxiety and disease uncertainty raised their social function, improved their parents' understanding of disease and care related knowledge, reduced the degree of demand for disease and care related knowledge, and the parents of ALL children responded well to the whole intervention. The application and development are of reference and reference value.
【學(xué)位授予單位】：第二軍醫(yī)大學(xué)
【學(xué)位級別】：博士
【學(xué)位授予年份】：2017
【分類號】：R473.73

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