Four hundred and twenty-one adult allogeneic haematopoietic stem cell transplant (HSCT) survivors participated in a cross-sectional study to assess sexual dysfunction and infertility post-transplant. Survey instruments included the Sydney Post-Blood and Marrow Transplant (BMT) Survey, Functional Assessment of Cancer Treatment (FACT) -BMT, the Depression, Anxiety, Stress Scales (DASS 21), the Chronic Graft-versus-Host Disease (cGVHD) Activity Assessment-Patient Self Report (Form B), the Lee cGVHD Symptom Scale and The Post-Traumatic Growth Inventory. Most HSCT survivors reported sexual difficulties (51% of males; 66% of females). Men reported erectile dysfunction (79%) and decreased libido (616%) and women reported loss of libido (83%), painful intercourse (73%) and less enjoyment of sex (68%). Women also commonly reported vaginal dryness (73%), vaginal narrowing (34%) and vaginal irritation (26%). Woman had much higher rates of genital cGvHD than men (22% vs. 5%). Age and cGVHD were significantly associated with sexual dysfunction.
2Few survivors had children following transplant (33%). However, for those of reproductive age at HSCT, 22% reported trying to conceive, with 103% reporting success. This study is the largest to date exploring sexual function in survivors of allo-HSCT. These data provides the basis for health service reform to better meet the needs of HSCT survivors, including evidence to support counselling and education both pre-and post-transplant.
HSCT has a profound and pervasive impact on the life of survivors-reducing their horizons and shrinking various parts of their worlds. While HSCT survivors can describe the ways in which their life has changed, many of their fears, anxieties, regrets and concerns are existential in nature and are ill-defined-making it exceeding unlikely that they would be adequately captured by standard psychometric measures of QoL post HSCT.
Allogeneic Blood and Marrow Transplant (BMT) survivors are at high risk of secondary cancers. Although current guidelines endorse survivors following Country‐specific general population screening recommendations to mitigate this risk, little is known about cancer screening adherence in Australian BMT survivors. We conducted a cross‐sectional survey of 441 BMT survivors who were >1 year post transplant, to explore rates of screening for secondary cancers and to identify barriers to cancer screening recommendations. Survey instruments included the Sydney Post‐BMT Survey, FACT‐BMT, DASS 21, The Chronic Graft versus Host Disease (GVHD) Activity Assessment–Patient Self‐Report (Form B), the Lee Chronic GVHD Symptom Scale, Fear of Cancer Recurrence Scale, and The Post Traumatic Growth Inventory. Fifty‐seven percent of respondents were male, median age 54 years, and 40% were >6 years post‐BMT. Rates of cancer screening adherence were as follows: cervical 63.4%, breast 53.3%, skin 52.4%, and bowel 32.3%. Older BMT survivors and those >2 years post transplant were more likely to undergo cancer screening. Improved quality of life was associated with screening for skin, breast, and cervical cancer. Fear of cancer recurrence negatively impacted on cervical screening. For those who had not undergone screening, the majority reported not being advised to do so by their treatment team. This study is the largest and most comprehensive to date exploring cancer screening adherence in BMT survivors in Australia. These data provide the basis for health service reform to better meet the needs of BMT survivors and provide evidence to support counseling and education of both patients and professionals.
Despite oral complications commonly occurring after Allo-BMT, many survivors receive inadequate dental care. These results emphasize the need for improved oral health education, the importance of regular dental checks and improvement in the delivery of dental health services for BMT survivors.
Four hundred forty-one adult allogeneic blood and marrow transplantation (BMT) survivors participated in a cross-sectional survey to assess long-term follow-up (LTFU) model of care preference. Survey instruments included the Sydney Post BMT Survey, Functional Assessment of Cancer Therapy-BMT, Depression Anxiety Stress Scales 21, the Chronic GVHD Activity Assessment-Patient Self Report (Form B), the Lee Chronic GVHD Symptom Scale and the Post-Traumatic Growth Inventory. We found most BMT survivors (74%) would prefer LTFU with their transplantation physicians alone or in combination with transplantation center-linked services (satellite clinics or telemedicine) Over one-quarter indicated a preference for receiving comprehensive post-transplantation care in a "satellite" clinic staffed by their BMT team situated closer to their place of residence, with higher income, higher educational level, and sexual morbidity being significant social factors influencing this preference. Regular exercise was reported less often in those who preferred telemedicine, which may reflect reduced mobility. The factor most strongly associated with a preference for transplantation center follow-up was the severity of chronic graft-versus-host disease. Full- and part-time work were negatively associated with transplantation center follow-up, possibly implying decreased dependency on the center and some return to normalcy. This study is the first to explore the preferences of BMT survivors for long-term post-transplantation care. These data provides the basis for LTFU model of care development and health service reform consistent with the preferences of BMT survivors.
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