Impact of GvHD on quality of life in long-term survivors of haematopoietic transplantation

Being in work or the equivalent is an important goal after allo-SCT and is used as an indicator of recovery. The aim was to elucidate occupational status and factors associated with work among SCT survivors. Adults in working age with a haematological disease (n = 177) were followed up within a median of 8 (range 28) years post allo-SCT. Predictors of not being in work at all or working part-time because of sick leave, disability pension or early old-age pension were analyzed using logistic regression analyses. At diagnosis, 82% of the participants were working full-time and 2% were on sick leave or old-age pension. At follow-up, 52% were working full-time, 27% were working part-time and 17% were on sick leave, disability pension or old-age pension. Not working at all was associated with multi-morbidity (P = 0.01) and poorer health (P = 0.00). Working part-time was associated with a higher age at diagnosis (P = 0.00), being a woman (P = 0.03), being born abroad (P = 0.03) and multi-morbidity (P = 0.00). In conclusion, the majority of survivors were in paid work at follow-up; however, a substantial number were not working or worked part-time.

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Occupational status among adult survivors following allo-SCT

Winterling

Johansson

Wennman-Larsen

et al. 2014

“…Although our analysis demonstrated no difference in OS, the decreased risk of Xgrade II aGVHD is important to note. Research showing that quality of life is negatively impacted by aGVHD 35 and health care costs are significantly higher with the development of aGVHD 36 indicate the importance of reducing aGVHD. (25) 14 (33) 102 (29) Female (D) to male (P), n (%)…”

Section: Discussionmentioning

confidence: 99%

The impact of frequent HLA haplotypes in high linkage disequilibrium on donor search and clinical outcome after unrelated haematopoietic SCT

Jöris

Lankester

Borne

et al. 2012

The MHC region on chromosome 6 contains a large number of non-HLA genes next to the HLA genes. Matching for HLA in unrelated hematopoietic SCT (HSCT) does not necessarily mean that these non-HLA genes are also matched. We selected 348 Northwest European patients transplanted with an HLA-A-, -B-, -C-, -DRB1-, -DQB1-matched unrelated donor (MUD) between 1987 and 2008. Patients' haplotypes were identified via descend. We were unable to determine the haplotypes of the donor; therefore we used frequent haplotypes (FH) in high linkage disequilibrium (LD) as a proxy for haplotype matching. Presence of a FH in a patient positively affected the probability and speed of identifying a matched unrelated donor. Competing risk survival analysis showed that patients with one or two FH have a statistically significantly decreased probability of developing Xgrade II acute GVDH (aGVHD) without increased risk of relapse compared to patients without FH (HR (95% CI): 0.53 (0.31-0.91)). This association was strongest for those FH with the highest LD between both HLA-A and -C or -B, and HLA-C or -B and -DRB1 (HR (95% CI): 0.49 (0.26-0.92)). These results extend evidence that non-HLA allele coding regions have a significant impact on development of Xgrade II aGVHD. We conclude that there is more to successful HSCT than matching for HLA genes.

“…1,3 Recommended tools like the Lee symptom scale for adults, the SF-36 and the FACT-BMT have shown good correlation with different cGVHD severity scores but clearly there are no pediatric instruments. [22][23][24][25] HRQL measures should be easy to administer and give preference to quantitative, rather than semiquantitative data. HRQL is a widely acknowledged clinical outcome criteria, and many instruments have been developed and validated.…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in pediatric patients after allogeneic SCT: development of the PedsQL Stem Cell Transplant module and results of a pilot study

Lawitschka

Guclu

Varni

et al. 2014

With increased survival after pediatric allogeneic hematopoietic SCT health-related quality of life (HRQL) has emerged as an essential health outcome. The impact of transplant and chronic GVHD (cGVHD)-associated morbidity remains a major obstacle. In 2005, the National Institutes of Health (NIH) Consensus Conference on Criteria for Clinical Trials in cGVHD recommended HRQL tools as an independent measure of the impact of disease burden. The NIH recommendations did not provide a cGVHD-specific tool for HRQOL measures in children. This report focuses on the development of an SCT-specific instrument to assess HRQL in children and adolescents. For the assessment of generic HRQL we chose the PedsQL (Pediatric Quality of Life Inventory) Generic Cores Scales, which have been used in a large number of healthy, acutely ill and chronically ill children and adolescents. To capture SCT-and, specifically, cGVHD-related problems, we developed the PedsQL Stem Cell Transplant module by reviewing the literature, taking over some items/scales of other PedsQL modules, interviewing patients, parents and members of the health-care team, and applying the PedsQL measurement methods. The final PedsQL Stem Cell Transplant module consists of the HRQL domains: pain and hurt, fatigue/sleeping problems/weakness, nausea, worry/anxiety about disease/treatment, nutritional problems, neurocognitive problems, communication about disease/treatment, loneliness, physical functioning and additional somatic complaints (pruritus, skin inflammation, oral problems, eyes or breathing) including patients' and parents' assessment. It was tested in 35 pediatric patients, who were referred to our SCT Outpatient Clinic about 100 days post SCT. Both the generic PedsQL and the SCT-specific scales showed high internal consistency, with Cronbach alpha levels of ⩾ 0.70 in almost all scales. Most problems were detected within the HRQL domains of physical functioning and pain. The summary scores of the generic PedsQL and the PedsQL Stem Cell Transplant module showed high correlations (r = 0.89 in patients' and r = 0.81 in parents' assessments). Moreover, both tools discriminated between patients with and without cGVHD. The PedsQL Stem Cell Transplant module is practical for use and suitable across a broad age range (2-18 years) both in patients with and without cGVHD. However, it is still a pilot instrument and needs further development and testing in a larger patient population.