Return to work experiences of patients treated with stem cell transplantation for a hematologic malignancy

Supportive Care in Cancer https://doi.org/10.1007/s00520-018-4596-0 ORIGINAL ARTICLE Return to work experiences of patients treated with stem cell transplantation for a hematologic malignancy S. Persoon 1 & L. M. Buffart 2,3,4 & M. J. M. Chinapaw 5 & F. Nollet 1 & M. H. Frings-Dresen 6 & S. Koning 1,5 & M. J. Kersten 7 & S. J. Tamminga 6 Received: 11 October 2017 / Accepted: 10 December 2018 # The Author(s) 2019 Abstract Purpose This qualitative study aimed to identify hematopoietic stem cell transplantation (HSCT) survivors’ (1) work perceptions; (2) barriers to and facilitators of return to work (RTW); and (3) possible solutions to improve RTW. Method Fifteen patients treated with HSCT 1–5 years ago participated in face-to-face semi-structured interviews. Interviews were analyzed following the steps of thematic content analyses. Results RTW was often characterized as a complex and prolonged trajectory, and it was frequently incomplete in working hours, tasks, and/or responsibilities. Work perceptions varied between patients; most valued work as positive, but some also reported a decline in work capacity and/or in importance. Perceived barriers included the duration and side effects of cancer treatment, the presence of comorbidity and poor health before diagnosis, having difficulties commuting and doing household tasks. Perceived facilitators were financial incentives, keeping in touch with the workplace, support of other patients and family, and looking after one’s health. Proposed solutions to improve RTW included discussing RTW at the hospital, enhanced employer support, improved accessibility of rehabilitation programs, and more information about the consequences of being sick-listed. Conclusions Many HSCT survivors value work as important and they are motivated to RTW. Insight in work perceptions, RTW barriers, and solutions might help researchers, healthcare professionals, and employers to develop and/or tailor individualized multidisciplinary care to facilitate RTW. Keywords Hematopoietic stem cell transplantation . Hematologic malignancy . Return to work (RTW) . Qualitative research * S. J. Tamminga 1 Amsterdam UMC, University of Amsterdam, Rehabilitation Medicine, Amsterdam Movement Sciences institute, Amsterdam, The Netherlands 2 Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Epidemiology and Biostatistics, Amsterdam Public Health research institute, Amsterdam, The Netherlands 3 Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam, The Netherlands 4 Exercise Medicine Research Institute, Edith Cowan University, Joondalup, Australia 5 Amsterdam UMC, Vrije Universiteit Amsterdam, Department of Public and Occupational Health, Amsterdam Public Health research institute, Amsterdam, The Netherlands 6 Amsterdam UMC, University of Amsterdam, Coronel Institute of Occupational Health, Amsterdam, The Netherlands 7 Amsterdam UMC, University of Amsterdam, Department of Hematology, Amsterdam, The Netherlands Introduction Hematopoietic stem cell transplantation (HSCT) has improved the survival of patients with various hematologic malignancies [1]. However, this aggressive type of treatment is frequently associated with short- and long-term medical complications [1–3], physical and psychological symptoms [2, 4], and reduced quality of life (QoL) [4, 5]. Not surprisingly, a substantial proportion of HSCT survivors does not, or only partially, return to work (RTW) [6–13]. A previous study found for instance that only 36% of the HSCT survivors who worked full-time before transplant had returned to full-time work 1 year after transplant [8], and this proportion had increased to 60% after 5 years [8]. The same study showed that 36% of the HSCT survivors working full-time 3 years after transplant reported ongoing work-related limitations with a diminished ability to accomplish as much at work compared with the pre-illness situation [8]. Similarly, in a Swedish Support Care Cancer study, approximately 40% of the patients that were on average 10 years post-transplant reported a reduced physical work capacity [9]. Improving sustainable RTW might improve Qol [14, 15]. Previous reviews in which the experiences with work of patients with various types of cancer were evaluated reported that (return to) work may restore a sense of normalcy and/or a sense of the former self, and provide financial security, distraction [15, 16], and social interaction [16]. Currently, only limited data are available on the attitudes toward and experiences with RTW of HSCT survivors. Recently, an American qualitative study evaluated the long-term experiences with work and finances among patients treated with autologous stem cell transplantation [17]. Notable were the reported financial challenges and health insurance difficulties [17]. Furthermore, a previous Australian qualitative study explored the survivorship and RTW experiences of patients treated for hematologic malignancies, of whom half were treated with HSCT [18]. This study focused on patients who faced major problems with returning to work, the facilitators of successful RTW and recommendations for supportive care organizations, and to a lesser extent on perceived problems while being at work [18]. The findings of these studies, notwithstanding their importance, may not be generalizable to other countries given the country-specific laws and regulations. In the Netherlands, both patients and employers are responsible for RTW. During the first 2 years of sick-leave, patients cannot be fired because of illness and they receive at least 70% of their salary. Subsequently, patients are assessed for disability pension [19]. Given the scarcity of literature on this topic, more research on HSCT survivors’ experiences with their RTW is warranted. This will aid the development of interventions supporting survivors to successfully RTW. Therefore, this qualitative study aimed to identify HSCT survivors’ (1) (return to) work perceptions; (2) barriers to and facilitators of RTW; and (3) possible solutions to improve RTW. Patient recruitment and study procedures Patients were recruited from the outpatient clinic of the hematology department of an academic hospital using a convenience sampling process. They were eligible for participation if they were: (1) treated with HSCT for a hematologic malignancy 1–5 years earlier; (2) aged between 18 and 60 years at the time of the HSCT; (3) working at least 12 h per week in the year prior to the HSCT; (4) fluent in Dutch; (5) in remission since the HSCT; and (6) having no severe physical or mental comorbidity at time of the interview. Recruitment was stopped after 15 interviews. We determined this sample size a priori based on our experience with reaching data saturation after inclusion of 12 patients in a previous qualitative study regarding barriers to and facilitators of RTW of breast cancer survivors [21], assuming that we wo (...truncated)