在台灣,血癌的發生率逐年攀升,而隨著醫療的進步,血癌病人的存活率也大幅提升。血癌治療過程造成的暫時或永久性不孕,可能對病人造成心理衝擊,並影響其生活品質。本研究目的在於了解血癌病人對生殖保存的需求及認知,了解醫護人員對生殖保存的觀點與經驗,並進一步探討臨床執行生殖保存照護的挑戰。研究採深度訪談法輔以觀察法來蒐集資料,共訪談13位血癌的病人及13位血液腫瘤科與生殖醫學科相關醫護人員。 研究結果分三部分進行討論,依序為病人的需求與態度、醫護人員的態度與看法,以及現行治療流程的問題。在第一部分,受訪的13位病人中有10位曾接受生殖保存諮詢,其中有4位病人成功保存生殖細胞。研究者發現,病人對於治療後不孕風險與生殖保存的相關知識普遍不足,在疾病確診時,大多以癌症治療與自身存活為優先考量,但在被告知有機會時,大多表示願意嘗試生殖保存。在第二部分,研究者發現,醫護人員與病人溝通生殖保存的困難包括如下:病人急需開始治療、病人狀況不佳、醫病溝通費時、自身對生殖保存知識不足、不清楚如何告知病人,以及缺乏其他病人經驗。在第三部分,研究結果指出,病人在現行生殖保存制度下面臨諸多挑戰,包括醫師態度消極、病人缺乏可以諮詢與溝通的對象,以及不同專科缺乏合作準則與規範。 隨著存活率的提升,血癌病人的生殖問題需要更多關注。為了提供血癌病人更友善的醫療照護資源,提升其生活品質,研究者醫療照護團隊提出以下建議:可提供病人有關治療可能引起不孕風險的相關資訊與服務諮詢、建立並執行生殖保存照護流程、強化跨專科合作、於治療前與病人溝通生殖問題,並對有需求的病人提供醫療協助。 關鍵字:血癌、生殖保存、腫瘤生殖、不孕、癌症存活者
The incidence of hematologic malignancies has increased steadily in Taiwan. Along with the improvement of medical treatment, the survival of patients with hematologic malignancies has greatly improved. Cancer treatment may cause temporary or permanently infertility, which may lead to psychological distress and reduced quality of life. As patients live longer, the consequences of cancer treatments and fertility preservation are of increasing importance. The aims of this study was to understand the knowledge, needs and experiences of fertility preservation (FP) of patients with hematologic malignancies, and the perceptions and practices of healthcare providers concerning FP for patients with hematologic malignancies. This study also aimed to identify the challenges of FP in health care settings. In-depth interviews with 13 patients and 13 health care providers along with on-site observation were conducted. Research findings were presented in three parts, respectively addressing patients’ needs and attitudes, health care providers’ perspective, and problems of current treatment procedures. In the first part, findings showed that among all the 13 interviewed patients, 10 had received counseling, and among them 4 had successfully completed FP. Most patients were unaware of infertility risk of cancer treatment and uninformed with FP information. At the time of cancer diagnosis, most patients were pre-occupied with cancer treatment and own survival, but once informed, most of them expressed an aspiration to preserve fertility. In the second part, healthcare providers were found to encounter multiple barriers in initiating discussions about FP with patients, which included the health conditions of patients, the urgent need for treatment, and their perceived insufficiency in knowledge concerning FP procedures and in awareness of experiences of other cases. In the third part, the findings indicated that patients faced several challenges, including the passive attitudes of their physicians, the lack of the counselors or coordinators about FP, and the lack of collaborative guidelines or practices among different subspecialties. The fertility issues of patients with hematologic malignancies deserve attention, as their survival rate has been improved. To ensure the provisions of more friendly medical care resources and to improve life quality of patients with hematologic malignancies, the researcher proposed the following suggestions to the health care team: to provide patients the information concerning the infertility risks caused by cancer treatment and consultation services, establish and implement treatment procedures that incorporate FP, strengthen collaboration across sub-specialties, communicate with patients about FP before the initiation of cancer treatment, and provide medical assistance to patients in needs. Key words: hematologic malignancies, fertility preservation, oncofertility, infertility, cancer survivors