Louisa Brown

A survey of fertility and sexual health following allogeneic haematopoietic stem cell transplantation in New South Wales, Australia.

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.

Adherence to cancer screening guidelines in Australian survivors of allogeneic blood and marrow transplantation (BMT)

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.

Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?

PurposeThe 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).MethodParticipants 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.ResultsMajor 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.ConclusionsHSCT 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.

Epidemiology of complementary and alternative medicine therapy use in allogeneic hematopoietic stem cell transplant survivorship patients in Australia

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.

The experience of survival following allogeneic haematopoietic stem cell transplantation in New South Wales, Australia

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<0.001) and employment (full-time employment fell from 64 to 33%, P<0.001), suboptimal vaccination (31% complete), and health screening (≈50%). Risk factors for poor vaccination and health screening were cGVHD, younger age, less education, rural/regional residence and transplantation <2 years. This study suggests that improvement in survivorship may necessitate structural changes in the current delivery of health services.

Changes to work status and household income of long-term allogeneic blood and marrow transplant survivors in New South Wales, Australia

As long-term survival following Blood and Marrow Transplant (BMT) improves, it is increasingly important to explore the long-term impact it has on survivors’ lives, including their work status and household income. Previous studies suggest that 50–70% of survivors return to work within 1 year of BMT and up to 72% at 10 years post BMT. The accuracy of these estimates are open to question however, as these studies are small, combine survivors of both autologous and allogeneic transplant, reflect historical age-bias in selection for transplantation, and appear inconsistent with reports that more than half of survivors and families report a decline in income post BMT and experience significant financial hardship as a result. In this multi-centre, cross-sectional study we aimed to identify the changes in work status and household income in a large cohort of allogeneic BMT survivors, and examine the demographic, socioeconomic, transplant factors and sequelae associated with those changes. Eligible participants were allogenic BMT survivors >18 years, transplanted between January 2000 and December 2012 in New South Wales, Australia, who could read and write English, and provide consent. Potential participants were identified from the transplant databases of the adults BMT centres in NSW, and were asked to complete seven questionnaires; the Sydney Post-BMT Study Survey, FACT-BMT Version 4, DASS21, The Chronic GVHD Activity Assessment – Patient Self Report (Form B), The Lee Chronic GVHD Symptom Scale, the Fear of Cancer Recurrence (FoCR) Scale and The Post Traumatic Growth Inventory (PTGI). The Sydney Post BMT Study Survey (SPBS) was developed by the research team and comprised 402 questions grouped into 20 domains including socio-demographics, pre and post transplant work status, functioning and household income. The questionnaire used tick box responses, short answer questions and 5-step Likert scales to measure attitudes. It was piloted to assess face and content validity and to check for comprehension. For each consenting participant data was also collected on diagnosis and transplant details. Income and occupational data were stratified by survivor demographics and baseline transplant characteristics using