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To establish the demographic, medical, transplant, and lifestyle factors that impact Quality of Life (QoL) in long-term survivors of allogeneic Hematopoietic Stem Cell Transplantation (allo-HSCT).Cross-sectional study utilizing self-report measures.In this cross-sectional study of 441 adult survivors of allo-HSCT, participants completed questionnaires assessing QoL, psychological, social, demographic, and clinical variables.Factors associated with improved QoL post-allo-HSCT included time since transplant, female gender, attendance at outpatient appointments, health screening uptake, exercise, and resumption of travel. Factors significantly associated with impaired QoL included chronic morbidities (GVHD), taking psychotropic medication, failure to resume sexual activity (in men), male gender, psychological distress, low income or decline in work status, transition to non-physical work, and necessity for post-allo-HSCT care from various health professionals.Identification of survivors more likely to experience a reduced QoL following allo-HSCT may enable the targeting of health services to the most vulnerable, and the development of interventions and resources. The data from this study led to the development of HSCT Long-Term Follow Up Clinical Guidelines in New South Wales.

The aim of this qualitative study was to gain a rich understanding of the impact that haematopoietic stem cell transplantation (HSCT) has on long-term survivor’s quality of life (QoL). Participants included 441 survivors who had undergone HSCT for a malignant or non-malignant disease. Data were obtained by a questionnaire positing a single open-ended question asking respondents to list the three issues of greatest importance to their QoL in survivorship. Responses were analysed and organised into QoL themes and subthemes. Major themes identified included the following: the failing body and diminished physical effectiveness, the changed mind, the loss of social connectedness, the loss of the functional self and the patient for life. Each of these themes manifests different ways in which HSCT survivor’s world and opportunities had diminished compared to the unhindered and expansive life that they enjoyed prior to the onset of disease and subsequent HSCT. 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.

The aims of this study were to describe the long-term nutrition, body weight and body image issues facing survivors of Allogeneic Blood and Marrow Transplant (BMT) and their impact on quality of life. It also describes survivors’ perception of enteral feeding during BMT. Four hundred and forty-one survivors who had undergone a BMT in NSW, Australia between 2000 and 2012 (n = 441/583) completed the Sydney Post BMT Study Survey (SPBS). Forty-five percent of survivors less than 2-year post-transplant reported a dry mouth, 36 % reported mouth ulcers and 19 % had diarrhoea. This was consistent across all survivor groups, regardless of time since transplant. Patients with one or more gastrointestinal (GI) symptoms had significantly lower quality of life scores. There was a significant difference in quality of life scores when comparing those with no GI symptoms to those with one or more symptoms (P =

Allogeneic haematopoietic stem cell transplantation (allo-HSCT) entails long-term morbidities that impair survivors' quality of life through broad physical and psychosocial sequelae. Current data and survival measurements may be inadequate for contemporary Australian allo-HSCT recipients. This study sought to comprehensively describe survivorship in an up-to-date, local setting through validated measurements and a novel questionnaire designed to complement and address limitations of current instruments. All adults who received an allo-HSCT between 2000 and 2012 in New South Wales were eligible and included, if alive, those literate and consenting to the study, which encompassed seven survey instruments. Four hundred and forty-three survivors participated, which is 76% of contactable (n=583) and 66% of eligible survivors (n= 669). Chronic GVHD (cGVHD) and co-morbidity rates were similar to published data. Noteworthy results include prevalent sexual dysfunction (66% females, 52% males), loss of income (low income increased from 21 to 36%, P

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.

Background Oral and dental disease is a major cause of long-term morbidity following allogeneic blood and marrow transplantation (Allo-BMT). This study aimed to describe the extent and range of oral and dental complications in BMT recipients and to identify gaps in service provision provided to this high-risk group. Methods Participants were Allo-BMT recipients, aged >18 years, and received transplants between 2000 and 2012 in NSW. They completed seven surveys, the purpose-designed Sydney Post-BMT Study survey and six other validated instruments. Results Of 441 respondents, many reported dry mouth (45.1%), dental caries (36.7%), mouth ulcers (35.3%), oral GVHD (35.1%), gingivitis (16.2%), tooth abscess (6.1%) and oral cancer (1.5%). Regular dental visits were reported by 66.2% of survivors. Middle-high income, older age and geographic location showed a positive association with regular dental visits. Of those who did not visit the dentist regularly, 37% stated they did not feel it necessary, 36% reported cost and 20% stated it was not advised by the treating team. Conclusion 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.

Background This cross-sectional survey aimed to establish the prevalence of infectious diseases and vaccination uptake in long-term allogeneic hematopoietic stem cell transplants (HSCT) survivors in New South Wales, in order to reduce long-term post-HSCT morbidity and mortality and enhance long-term care. Patients and methods Hematopoietic stem cell transplants survivors aged over 18 years and transplanted between 2000-2012 in New South Wales (NSW) were eligible to participate. Survivors self-completed the Sydney Post BMT Study survey, FACT-BMT (V4), Chronic Graft versus Host Disease (cGVHD) Activity Assessment Self Report, Lee Chronic GvHD Symptom Scale, DASS21, Post Traumatic Growth Inventory, and the Fear of Recurrence Scale. Results Of the 583 HSCT survivors contacted, 441 (78%) completed the survey. Respondents included 250 (57%) males and median age was 54 years (range 19-79 years). The median age at the time of transplant was 49 years (Range: 17-71), the median time since HSCT was 5 years (Range: 1-14) and 69% had cGVHD. Collectively, 41.7% of survivors reported a vaccine preventable disease (VPD) with the most common being influenza-like-illness (38.4%), varicella zoster/shingles (27.9%), pap smear abnormalities (9.8%), pneumococcal disease (5.1%), and varicella zoster (chicken pox) (4.6%). Only 31.8% had received the full post-HSCT vaccination schedule, and the majority (69.8%) of these had received the vaccines via their General Practitioner. cGVHD was not found to be a significant factor on multivariate analysis for those who were vaccinated. There was a trend toward lower vaccination rates in patients in a lower income strata. Conclusions Vaccinating post-HSCT survivors to prevent infections and their consequences have an established role in post-HSCT care. Improving rates of post-HSCT vaccination should be a major priority for BMT units.

In addition to prescribed conventional medicines, many allogeneic hematopoietic stem cell transplant (HSCT) survivors also use complementary and alternative medical therapies (CAM), however, the frequency and types of CAMs used by allogeneic HSCT survivors remain unclear. Study participants were adults who had undergone an allogeneic HSCT between 1st January 2000 and 31st December 2012. Participants completed a 402‐item questionnaire regarding the use of CAM, medical complications, specialist referrals, medications and therapies, infections, vaccinations, cancer screening, lifestyle, and occupational issues and relationship status following stem cell transplantation. A total of 1475 allogeneic HSCT were performed in the study period. Of the 669 recipients known to be alive at study sampling, 583 were contactable and were sent study packs. Of 432 participants who returned the completed survey (66% of total eligible, 76% of those contacted), 239 (54.1%) HSCT survivors used at least one form of CAM. These included dietary modification (13.6%), vitamin therapy (30%), spiritual or mind–body therapy (17.2%), herbal supplements (13.5%), manipulative and body‐based therapies (26%), Chinese medicine (3.5%), reiki (3%), and homeopathy (3%). These results definitively demonstrate that a large proportion of HSCT survivors are using one or more form of CAM therapy. Given the potential benefits demonstrated by small studies of specific CAM therapies in this patient group, as well as clearly documented therapies with no benefit or even toxicity, this result shows there is a large unmet need for additional studies to ascertain efficacy and safety of CAM therapies in this growing population.

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 (61·6%) 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. Few survivors had children following transplant (3·3%). However, for those of reproductive age at HSCT, 22% reported trying to conceive, with 10·3% reporting success. This study is the largest to date exploring sexual function in survivors of allo-HSCT. This 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.