Quality of working life of cancer survivors: development of a cancer-specific questionnaire

J Cancer Surviv (2016) 10:394–405 DOI 10.1007/s11764-015-0485-4 Quality of working life of cancer survivors: development of a cancer-specific questionnaire Merel de Jong 1 & Sietske J. Tamminga 1 & Angela G. E. M. de Boer 1 & Monique H. W. Frings-Dresen 1 Received: 6 August 2015 / Accepted: 27 August 2015 / Published online: 14 September 2015 # The Author(s) 2015. This article is published with open access at Springerlink.com Abstract Purpose The aim of this study was to generate, and select quality of working life issues for the development of an initial version of the Quality of Working Life Questionnaire for Cancer Survivors (QWLQ-CS). Methods Quality of working life issues were generated through focus groups with cancer survivors and oncological occupational physicians, and interviews with employers, supervisors, and organization officers. A selection of these quality of working life issues was made based on relevance and importance by conducting an online questionnaire among the cancer survivors and oncological occupational physicians. Researchers formulated the issues into items for the QWLQ-CS. Results A total of 24 cancer survivors, six oncological occupational physicians and 11 employers, supervisors, and organization officers participated. The 222 quality of working life issues identified through the focus groups, interviews, and literature were converted into an online questionnaire. Cancer survivors (N=20) found 44 issues not relevant or important with respect to their quality of working life. The researchers reviewed the remaining 178 issues and formulated them into 102 items classified by five categories: work perception, job characteristics, the social structure and environment, organizational characteristics, and the effect of the disease and treatment. Conclusions The initial version of the QWLQ-CS exists out of 102 items which cover the experiences and perceptions of cancer survivors in the work environment. All items were * Merel de Jong 1 Coronel Institute of Occupational Health, Academic Medical Center, University of Amsterdam, P.O. Box 22660, 1100 DD Amsterdam, The Netherlands indicated by working cancer survivors as relevant and important. Implications for cancer survivors This initial version of the QWLQ-CS may increase awareness of the potential problems or emotional difficulties working cancer survivors face during the work continuation process. Keywords Quality of working life . Cancer survivors . Questionnaire . Work continuation Introduction As cancer is developing into a chronic disease because of enhanced treatments and life prognosis, the number of people that continue living with a diagnosis of cancer is rising [1], and a substantial proportion of cancer survivors return to work after their diagnosis. Consequently, the number of working cancer survivors will increase. In addition, higher prevalence rates of cancer in older workers and the raising of the retirement age also contribute to this trend [2–4]. Work is important to cancer survivors; it signifies a return to normalcy and control, and it contributes to quality of life [5, 6]. Nevertheless, cancer survivors often experience changes when returning to work, for instance in work-based social support, altered work priorities, and impaired work ability [7]. These experiences result in problems, such as fatigue, loss of confidence, or being overprotected by the employer [8], and might interfere with the return-to-work (RTW) or work continuation process. The problems are perceived as barriers, such as a lack of understanding from the work environment that hampers a post-RTW phase [9]. In short, cancer survivors face many challenges in their working life. Previously, the working life of cancer survivors was studied by measuring for example work participation, J Cancer Surviv (2016) 10:394–405 productivity, and work loss [10–12]. This type of research encompasses quantitative outcomes that can be measured in an objective manner, but it does not include work-related problems experienced by cancer survivors at work. How cancer survivors perceive work-related problems, or a subjective perspective on their working life, has not been a topic of interest in major research. Hence, the working life of cancer survivors is often evaluated in a quantitative manner rather than a qualitative one, and the subjective work-related problems mentioned above are not taken into account. The importance of approaching working life in a subjective manner is demonstrated by studies that associated high Quality of Working Life (QWL) with increased job satisfaction and lower levels of turnover intentions in Bhealthy^ employees [13, 14]. Most research on QWL has been performed solely among Bhealthy employees^. Previous studies on QWL focused on individuals’ experiences in the job, organizational, and social environment [15–17]. Even the questionnaires used today for measuring QWL were developed for healthy employees [15, 16, 18, 19], or specific occupations, such as nurses [20]. However, these groups differ from the group of employed cancer survivors because of the different problems cancer survivors face in their work due to their health problems and treatment. For instance, the NIOSH Quality of Worklife module [18] includes items about physical and mental health, but not items about cognitive limitations that can result from chemotherapy and that can influence the QWL of cancer survivors. The same applies to the Quality of Working Life Systematic Inventory (QWLSI) [19] that consists of items relevant to QWL, yet does not incorporate the emotional impact of cancer on the meaning of work or its possible influence on the QWL of cancer survivors. In addition, the Brooks’ Quality of Nursing Work Life Survey [20] is developed for nurses, and is therefore less relevant for cancer survivors with different professional backgrounds. In sum, a new valid and reliable QWL questionnaire is required, specific to cancer survivors. The aim of this study was to generate and select QWL issues for the development of an initial version of the Quality of Working Life Questionnaire for Cancer Survivors (QWLQCS). Our research questions are as follows: 1. What issues contribute to the QWL of cancer survivors? 2. What relevant and important issues should be selected for the initial version of the Quality of Working Life Questionnaire for Cancer Survivors (QWLQ-CS)? Methods Study design The guidelines for developing Questionnaire Modules of the EORTC Quality of Life Group [21] are designed for 395 developing new questionnaires modules, and therefore also useful in developing our Quality of Working Life Questionnaire for Cancer Survivors (QWLQ-CS). Based on the guidelines, this study is divided into two different parts. The objective of the first part was to generate QWL issues by means of a qualitative study, while the second part was aimed at making a selection of these QWL issues by conducting an online questionnaire. For (...truncated)