The Quality of Working Life Questionnaire for Cancer Survivors (QWLQ-CS): a Pre-test Study

BACKGROUND: Returning to and continuing work is important to many cancer survivors, but also represents a challenge. We know little about subjective work outcomes and how cancer survivors perceive being returned to work. Therefore, we developed the Quality of Working Life Questionnaire for Cancer Survivors (QWLQ-CS). Our aim was to pre-test the items of the initial QWLQ-CS on acceptability and comprehensiveness. In addition, item retention was performed by pre-assessing the relevance scores and response distributions of the items in the QWLQ-CS. METHODS: Semi-structured interviews were conducted after cancer survivors, who had returned to work, filled in the 102 items of the QWLQ-CS. To improve acceptability and comprehensiveness, the semi-structured interview inquired about items that were annoying, difficult, confusing, twofold or redundant. If cancer survivors had difficulty explaining their opinion or emotion about an item, the interviewer used verbal probing technique to investigate the cancer survivor’s underlying thoughts. The cancer survivors’ comments on the items were analysed, and items were revised accordingly. Decisions on item retention regarding the relevance of items and the response distributions were made by means of pre-set decision rules. RESULTS: The 19 cancer survivors (53 % male) had a mean age of 51 ± 11 years old. They were diagnosed between 2009 and 2013 with lymphoma, leukaemia, prostate cancer, breast cancer, or colon cancer. Acceptability of the QWLQ-CS was good - none of the items were annoying - but 73 items were considered difficult, confusing, twofold or redundant. To improve acceptability, for instance, the authors replaced the phrase ‘disease’ with ‘health situation’ in several items. Consequently, comprehensiveness was improved by the authors rephrasing and adjusting items by adding clarifying words, such as ‘in the work situation’. The pre-assessment of the relevance scores resulted in a sufficient number of cancer survivors indicating the items as relevant to their quality of working life, and no evident indication for uneven response distributions. Therefore, all items were retained. CONCLUSIONS: The 104 items of the preliminary QWLQ-CS were found relevant, acceptable and comprehensible by cancer survivors who have returned to work. The QWLQ-CS is now suitable for larger sample sizes of cancer survivors, which is necessary to test the psychometric properties of this questionnaire. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-016-1440-4) contains supplementary material, which is available to authorized users.