van Leeuwen Marieke, Kieffer Jacobien M, Efficace Fabio, Fosså Sophie D, Bolla Michel, Collette Laurence, Colombel Marc, De Giorgi Ugo, Holzner Bernhard, van de Poll-Franse Lonneke V, van Poppel Hendrik, White Jeff, de Wit Ronald, Osanto Susanne, Aaronson Neil K
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute-Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, Amsterdam, The Netherlands.
Unit, Italian Group for Adult Hematologic Diseases (GIMEMA) Data Center, Via Benevento 6, Rome, Italy.
Health Qual Life Outcomes. 2017 May 11;15(1):97. doi: 10.1186/s12955-017-0670-4.
Understanding of the physical, functional and psychosocial health problems and needs of cancer survivors requires cross-national and cross-cultural standardization of health-related quality of life (HRQoL) questionnaires that capture the full range of issues relevant to cancer survivors. To our knowledge, only one study has investigated in a comprehensive way whether a questionnaire used to evaluate HRQoL in cancer patients under active treatment is also reliable and valid when used among (long-term) cancer survivors. In this study we evaluated, in an international context, the psychometrics of HRQoL questionnaires for use among long-term, disease-free, survivors of testicular and prostate cancer.
In this cross-sectional study, we recruited long-term survivors of testicular and prostate cancer from Northern and Southern Europe and from the United Kingdom who had participated in two phase III EORTC clinical trials. Participants completed the SF-36 Health Survey, the EORTC QLQ-C30 questionnaire, the QLQ-PR25 (for prostate cancer) or the QLQ-TC26 (for testicular cancer) questionnaires, and the Impact of Cancer questionnaire. Testicular cancer survivors also completed subscales from the Nordic Questionnaire for Monitoring the Age Diverse Workforce.
Two hundred forty-two men (66% response rate) were recruited into the study. The average time since treatment was more than 10 years. Overall, there were few missing questionnaire data, although scales related to sexuality, satisfaction with care and relationship concerns of men without partners were missing in more than 10% of cases. Debriefing showed that in general the questionnaires were accepted well. Many of the survivors scored at the upper extremes of the questionnaires, resulting in floor and ceiling effects in 64% of the scales. All of the questionnaires investigated met the threshold of 0.70 for group level reliability, with the exception of the QLQ-TC26 (mean reliability .64) and the QLQ-PR25 (mean reliability .69). The questionnaires were able to discriminate clearly between patients with and without comorbid conditions.
The currently available HRQoL questionnaires exhibit acceptable psychometric properties and were well received by patients, but additional efforts are needed to ensure that the full range of survivor-specific issues is assessed.
了解癌症幸存者的身体、功能及心理社会健康问题与需求，需要对健康相关生活质量（HRQoL）问卷进行跨国和跨文化标准化，以涵盖与癌症幸存者相关的所有问题。据我们所知，仅有一项研究全面调查了用于评估正在接受积极治疗的癌症患者HRQoL的问卷，在（长期）癌症幸存者中使用时是否同样可靠且有效。在本研究中，我们在国际背景下评估了用于睾丸癌和前列腺癌长期无病幸存者的HRQoL问卷的心理测量学特性。
在这项横断面研究中，我们从北欧、南欧和英国招募了参与两项欧洲癌症研究与治疗组织（EORTC）III期临床试验的睾丸癌和前列腺癌长期幸存者。参与者完成了SF-36健康调查、EORTC QLQ-C30问卷、QLQ-PR25（用于前列腺癌）或QLQ-TC26（用于睾丸癌）问卷，以及癌症影响问卷。睾丸癌幸存者还完成了北欧监测不同年龄段劳动力问卷的子量表。
共招募了242名男性（应答率66%）进入研究。自治疗结束后的平均时间超过10年。总体而言，问卷数据缺失较少，不过超过10%的病例中与性、对护理的满意度以及无伴侣男性的关系问题相关的量表存在缺失。反馈表明，总体上问卷接受度良好。许多幸存者在问卷的高分端得分，导致64%的量表出现地板效应和天花板效应。除QLQ-TC26（平均信度0.64）和QLQ-PR25（平均信度0.69）外，所有调查的问卷在组水平信度上均达到0.70的阈值。这些问卷能够清晰地区分有无合并症的患者。
目前可用的HRQoL问卷表现出可接受的心理测量学特性，且患者接受度良好，但还需要进一步努力以确保评估涵盖幸存者所有特定问题。
