Let's work it out : aspects of the occupational situation of survivors of allogeneic haematopoietic stem cell transplantation

Abstract: Background: Work is an important part of life and contributes to an individual’s physical and mental well-being. Being diagnosed with a life-threatening haematological disease that requires an allogeneic haematopoietic stem cell transplantation (allo-HSCT) disrupts patients’ occupational situation as most end up on long-term sick leave. During recent decades, overall survival has improved and transplant-related mortality has decreased due to advances in transplantation procedures and supportive care. The treatment is nevertheless intense, and many survivors end up with long-lasting late effects that negatively affect their health, quality of life and return-to-work process. However, the scientific knowledge regarding the occupa-tional situation of allo-HSCT survivors is limited. Aim: The overarching aim of this thesis was to increase knowledge and gain a deeper understanding by exploring the occupational situation of allo-HSCT survivors with special focus on factors associated with sick leave and return to work. Methods: Both quantitative and qualitative research approaches were used. Participants of working age were recruited upon admission to the allo-HSCT unit and asked to complete questionnaires at six different data collection time points up to three years after allo-HSCT. In studies I – III, descriptive statistics and logistic regression analyses were used to analyse self-reported questionnaire data together with data collected from the participants’ medical re-cords and potential associations with self-reported data on sick leave and return to work (Study I, n=189; Study II, n=122; Study III, n=104). Study IV had a qualitative approach where 15 participants from the larger study sample who were working full time prior to diagnosis and were still on some level of sick leave three years after allo-HSCT, participated in semi-structured interviews three to six years after allo-HSCT. The findings were analysed using qualitative content analysis. Findings: One year after allo-HSCT, 76% of participants were still on sick leave, of whom 39% were on full-time sick leave. In univariate logistic regression analyses, factors that were found to be significantly associated with sick leave were presence of chronic graft-versus-host disease (cGvHD) one year post-transplantation, a high symptom burden and low physi-cal activity 4 months post-treatment as well as symptoms of depression and low vocational satisfaction 7 months after allo-HSCT. All except vocational satisfaction remained significant in multivariable analyses. One year after allo-HSCT, 28% of participants had returned to work >50%, which increased to 60% two years post-treatment. In univariate analyses, factors significantly associated with return to work >50% were higher education and not being diag-nosed with cGvHD with the latter being the only factor remaining significant in multivariable analysis. Work-related factors, such as being able to work from home, flexible working hours, being part of decision-making regarding work, were also analysed for potential associ-ations but none were found. However, in the qualitative study (IV), different individual work-related factors were identified with flexibility in working schedules and opportunities to work from home emerging as key components. Participants also described how an affected health due to late effects, such as fatigue, medical consequences and stress intolerance, had a nega-tive impact on both their return-to-work process and life in general. Conclusion: This thesis contributes to an increased awareness and a deeper understanding of the occupational situation of allo-HSCT survivors in the first six years following transplantation along with factors influencing their occupational situation. Results indicate that allo-HSCT survivors often face long-term sick leave and that return to work is a lengthy process in which health status and psychosocial factors appear to play a greater role than work-related factors. Qualitative findings suggest that, on an individual basis, flexible working conditions, particularly in terms of time, place and assignments, were considered facilitating factors in the return-to-work process. Supporting allo-HSCT survivors through person-centred rehabilitation, including physical, mental and occupational aspects, is essential in order for both the healthcare system and employers to provide support in allo-HSCT survivors’ return-to-work process.