Fauske Lena, Hompland Ivar, Lorem Geir, Hall Kirsten Sundby, Bondevik Hilde
Department of Oncology, Norwegian Radium Hospital, Oslo University Hospital, P.O. Box 5960, Nydalen-0424, Oslo, Norway.
Department of Interdisciplinary Health Sciences, Institute of Health and Society, University of Oslo, P.O. Box 1089, Blindern-0317, Oslo, Norway.
Sarcoma. 2020 Oct 6;2020:1814394. doi: 10.1155/2020/1814394. eCollection 2020.
This study explored how patients with metastatic gastrointestinal stromal tumour (GIST) experience the psychosocial challenges associated with their disease and its treatment, as well as how that experience influenced their practical, relational, vocational, and existential life.
This qualitative study has an explorative design and applied a phenomenological and hermeneutical approach. We conducted in-depth, semistructured interviews with 20 patients with metastatic GIST in long-term clinical remission. The gathered data were interpreted using a thematic analysis.
Living with metastatic GIST, as well as the side effects of the required medication, led to changes that limited the participants' daily life. They expressed how tiredness, impaired memory, and physical challenges were among the detrimental impacts of the disease on their family life, vocational life, social life, and leisure time. Adjustments were necessary to ensure they had sufficient energy to cope with the practical and relational aspects of everyday life. Feelings of uncertainty stemming from drug resistance, disease progression, and the possibility of early death were also experienced as challenging. Half the participants stated that it was difficult to keep negative mental health issues at bay, and all of them considered the time spent waiting for their scheduled follow-up scan to be burdensome.
It is important to focus increased attention on how the daily practical and psychosocial life of patients with chronic cancer, including metastatic GIST, is affected by their disease. Doing so might provide health-care workers with clues regarding how best to guide and support such patients throughout their emotional journey and, therefore, to improve their quality of life. As new medical treatments can also prolong survival and induce long-term clinical remission in relation to several other forms of metastatic cancer, the findings concerning GIST reported in this study might have widespread implications.
本研究探讨了转移性胃肠道间质瘤（GIST）患者如何应对与其疾病及其治疗相关的心理社会挑战，以及这种经历如何影响他们的实际生活、人际关系、职业生活和生存状态。
本定性研究采用探索性设计，并运用现象学和诠释学方法。我们对20例处于长期临床缓解期的转移性GIST患者进行了深入的半结构化访谈。使用主题分析法对收集到的数据进行解释。
患有转移性GIST以及所需药物的副作用导致了一些变化，限制了参与者的日常生活。他们表示，疲劳、记忆力减退和身体挑战是该疾病对其家庭生活、职业生活、社交生活和休闲时间的有害影响之一。有必要进行调整，以确保他们有足够的精力应对日常生活的实际和人际关系方面。耐药性、疾病进展和早期死亡可能性所带来的不确定性也被视为具有挑战性。一半的参与者表示难以抑制负面心理健康问题，并且他们所有人都认为等待预定的后续扫描的时间很漫长。
重要的是要更加关注慢性癌症患者，包括转移性GIST患者的日常实际生活和心理社会生活如何受到其疾病的影响。这样做可能会为医护人员提供线索，以了解如何在患者的情感历程中最好地指导和支持他们，从而提高他们的生活质量。由于新的医学治疗方法也可以延长其他几种转移性癌症患者的生存期并诱导长期临床缓解，本研究中关于GIST的研究结果可能具有广泛的意义。
