International evaluation of the psychometrics of health-related quality of life questionnaires for use among long-term survivors of testicular and prostate cancer

Abstract

BackgroundUnderstanding 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.MethodsIn 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.ResultsTwo 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.ConclusionsThe 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.

Results of a randomized trial of treatment modalities in patients with low or early-intermediate risk prostate cancer (PREFERE trial)

“…The QLQ-C30 items were transformed into a global health scale and five functioning scales (emotional, physical, cognitive, social, and role), as well as three multi-item and six single-item symptom scales. Further, patients were asked to fill QLQ-PR25 which includes questions on sexual activity and function (van Andel et al 2008 ; van Leeuwen et al 2017 ). QLQ reports were scheduled within 3 months post-randomization, and then after 1, 2, 3, 5, 7, 10, 13, and 17 years.…”

Danish translation and pilot testing of the European Organization for Research and Treatment of Cancer QLQ-TC 26 (EORTC QLQ-TC26) questionnaire to assess health-related quality of life in patients with testicular cancer

“…There has been prior commentary about the limitations of the EORTC QLQ-TC26 as a new instrument [ 4 ], however, with more time and sufficient use, the EORTC QLQ-TC26 will be better able to be assessed for utility in testicular-cancer specific QoL measurement. Phase IV field testing for the EORTC QLQ-TC26 is currently underway to assess for dimensionality, reliability, sensitivity to change and instrument validity [ 10 ].…”

“…Testicular cancer (TC) is the most common cancer in men between the ages of 15–45 years [ 1 ]. During and after treatment, some TC patients and survivors may face detrimental complications, including anxiety, depression, fatigue, infertility and sexual dysfunction [ 2 , 3 ], while others report health-related quality of life (HRQoL) values similar to the general population when using EORTC HRQoL measuring instruments [ 3 , 4 ]. However, these prior findings have not evaluated the specific features unique to TC, and many individuals experience lowered HRQoL as result of illness or treatment [ 5 ].…”

Functions of genes related to testicular germ cell tumour development

“…TGCT is highly curable with approximately 95% survival rate (Shanmugalingam et al ., ), but treatment may be associated with long‐term morbidities such as infertility, metabolic syndrome and cardiovascular diseases (van Leeuwen et al ., ). Furthermore, the TGCT incidence has increased several fold over the last 50 years.…”