Stenmarker Margaretha, Enskär Karin, Björk Maria, Pinkava Mirka, Rolander Bo, Golsäter Marie
Department of Pediatrics, Institution for Clinical Sciences, The Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden.
Department of Care Science, Faculty of Health and Society, Malmö University, Malmö, Sweden.
Asia Pac J Oncol Nurs. 2020 Sep 14;7(4):336-345. doi: 10.4103/apjon.apjon_22_20. eCollection 2020 Oct-Dec.
This cross-sectional study aimed to present how the unique cancer experience in childhood influences young adults' quality of life (QOL).
Qualitative and quantitative methods were used to code and analyze a study-specific questionnaire (133 items). These data are presented in accordance with a conceptual QOL/health-related QOL model.
The participants included 34 women and 28 men ( = 62) diagnosed with solid tumors/lymphoma in the period 1983-2003, who had been treated at the same childhood cancer center in Sweden. The current mean age was 28.7 years (range: 18-45, standard deviation [SD]: 6.3, median value: 28.5), the mean age at diagnosis was 12.9 years (range: 8-17, SD: 2.3, median value: 13), and the mean time elapsed since treatment was 15.7 years (range: 4-28, SD: 2.4, median value: 15). The response rate was 65%. Higher levels of psychological maturity were reported by women versus men ( = 0.01) and by survivors diagnosed with cancer during adolescence versus school age ( = 0.04). Male participants reported lower levels of physical limitations ( = 0.03) and emotional distress when being of treatment and in contact with health care services ( = 0.04). The strongest factor influencing QOL during therapy was parental support (97%), while the strongest factors after therapy were to live a life similar to peers (82%) and to be satisfied with one's life situation (81%). During treatment, limitations influencing QOL were related to lack of school support (2%), and after treatment, to deteriorated relationships with siblings (5%).
Life-threatening diseases at young ages have long-term psychosocial effects with ambiguous results at multiple levels. To capture these experiences, we recommend clinical studies that are based on conceptual clarifying frameworks and adopt a quantitative and qualitative research approach.
本横断面研究旨在呈现童年时期独特的癌症经历如何影响青年成年人的生活质量（QOL）。
采用定性和定量方法对一份特定研究问卷（133项）进行编码和分析。这些数据依据一个概念性的生活质量/健康相关生活质量模型呈现。
参与者包括34名女性和28名男性（n = 62），他们在1983 - 2003年期间被诊断患有实体瘤/淋巴瘤，曾在瑞典的同一儿童癌症中心接受治疗。当前平均年龄为28.7岁（范围：18 - 45岁，标准差[SD]：6.3，中位数：28.5），诊断时的平均年龄为12.9岁（范围：8 - 17岁，SD：2.3，中位数：13），治疗后经过的平均时间为15.7年（范围：4 - 28年，SD：2.4，中位数：15）。应答率为65%。女性报告的心理成熟度水平高于男性（p = 0.01），青春期被诊断患有癌症的幸存者报告的心理成熟度水平高于学龄期被诊断者（p = 0.04）。男性参与者报告的身体限制水平较低（p = 0.03），在接受治疗并与医疗服务接触时的情绪困扰水平较低（p = 0.04）。治疗期间影响生活质量的最主要因素是父母的支持（97%），而治疗后最主要的因素是过上与同龄人相似的生活（82%）以及对自己的生活状况感到满意（81%）。治疗期间，影响生活质量的限制因素与缺乏学校支持有关（2%），治疗后与和兄弟姐妹关系恶化有关（5%）。
年轻时危及生命的疾病具有长期的社会心理影响，在多个层面产生不明确的结果。为了捕捉这些经历，我们建议基于概念清晰的框架并采用定量和定性研究方法的临床研究。
