Kevin Scott Baker

Late effects in survivors of acute leukemia treated with hematopoietic cell transplantation: a report from the Bone Marrow Transplant Survivor Study

The Bone Marrow Transplant Survivor Study is a retrospective cohort study in which participants who received hematopoietic cell transplantation (HCT) between 1974 and 1998 and survived for ⩾2 years completed a 255-item questionnaire on late effects occurring after HCT. There were 281 survivors with acute myeloid leukemia (AML) and 120 with acute lymphoblastic leukemia (ALL). Siblings of participants (n=319) were recruited for comparison. Median age at interview was 36.5 years for survivors and 44 years for siblings. Median follow-up after HCT was 8.4 years. Conditioning included total body irradiation in 86% of AML and 100% of ALL subjects. The frequencies of late effects did not differ between ALL and AML survivors. Compared with siblings, survivors had a higher frequency of diabetes, hypothyroidism, osteoporosis, exercise-induced shortness of breath, neurosensory impairments and problems with balance, tremor or weakness. In multivariable analysis, the risk of these outcomes did not differ by diagnosis. Survivors after allogeneic HCT had higher odds of diabetes (odds ratio (OR)=3.9, P=0.04), osteoporosis (OR=3.1, P=0.05), abnormal sense of touch (OR=2.6, P=0.02) and reported their overall health as fair or poor (OR=2.2, P=0.03). Ongoing surveillance for these late effects and appropriate interventions are required to improve the health status of ALL and AML survivors after HCT.

Metabolic syndrome and cardiovascular risk in survivors after hematopoietic cell transplantation

Increasing numbers of hematopoietic cell transplantations (HCTs) are being performed annually with a greater number of long-term survivors. There is increasing concern regarding the late complications and long-term effects that are secondary to treatment exposures before HCT as well as during the HCT conditioning therapy. In both the autologous as well as allogeneic transplant setting, transplant survivors experience mortality rates higher than the general population and the risk of premature cardiovascular (CV)-related death is increased 2.3-fold compared with the general population. The etiology of CV-related deaths in HCT survivors is multifactorial; however, increasing evidence suggests that HCT survivors are at higher risk of developing adverse CV risk factors leading to the development of the metabolic syndrome (a constellation high triglyceride levels, low high-density lipoprotein-cholesterol, hypertension, high fasting blood sugars and increased waist circumference), which then predisposes individuals to risk for early CV-related death. Resistance to insulin is the primary underlying pathophysiologic mechanism that contributes to the development of metabolic syndrome and HCT survivors have been shown to be more likely to develop hypertension, hyperlipidemia and to be insulin resistant. However, the relationship between HCT-related treatment exposures (total body irradiation, high dose chemotherapy, calcineurin inhibitors, steroids, etc) and transplant-related complications (such as GVHD) with the development of CV risk factors and insulin resistance is still in the early stages of investigation. Greater knowledge of the concern regarding CV risk in HCT survivors among both patients and care providers will provide the opportunity for appropriate screening as well as interventions for modifiable risk factors.

Health behaviors and cancer screening practices in long-term survivors of hematopoietic cell transplantation (HCT): a report from the BMT Survivor Study

Patients undergoing hematopoietic cell transplantation (HCT) are at increased risk of chronic health conditions, including second malignant neoplasms and cardiovascular disease. Little is known about health behaviors and cancer screening practices among HCT survivors that could moderate the risk of these conditions. The BM transplant survivor study examined health behaviors and cancer screening practices in individuals who underwent HCT between 1976 and 1998, and survived 2+ years. Health behavior was deemed as high risk, if an individual was a current smoker and if they reported risky alcohol intake (⩾4 drinks per day (males), ⩾3 drinks per day (females)) on days of alcohol consumption. Cancer screening assessment was per American Cancer Society recommendations. There were 1040 survivors: 42.7% underwent allogeneic HCT; 43.8% were female; median time from HCT: 7.4 years (range 2.0–27.7 years). Median age at study participation: 43.8 years (range 18.3–73.0 years). Multivariate regression analysis revealed younger age (<35 years) at study participation (Odds ratio (OR)=4.7; P<0.01) and lower education (<college: OR=2.1; P<0.01) to be significantly associated with high-risk behavior. Survivors were significantly less likely to report high-risk behavior (OR=0.5; P<0.01) and more likely to have had a screening mammogram (OR=2.8; P=0.05) when compared with gender-matched sibling controls (N=309).

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

Conducting patient‐reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty‐seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3–6 and 12–18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper–pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3–6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient‐preferred instruments may optimize future research success.

Challenges and Opportunities for International Cooperative Studies in Pediatric Hematopoeitic Cell Transplantation: Priorities of the Westhafen Intercontinental Group

More than 20% of allogeneic hematopoietic cell transplantations (HCTs) are performed in children and adolescents at a large number of relatively small centers. Unlike adults, at least one-third of HCTs in children are performed for rare, nonmalignant indications. Clinical trials to improve HCT outcomes in children have been limited by small numbers and these pediatric-specific features. The need for a larger number of pediatric HCT centers to participate in trials has led to the involvement of international collaborative groups. Representatives of the Pediatric Blood and Marrow Transplant Consortium, European Group for Blood and Marrow Transplantations Pediatric Working Group, International Berlin-Frankfurt-Munster (iBFm) Stem Cell Transplantation Committee, and Childrens Oncology Groups Hematopoietic Stem Cell Transplantation Discipline Committee met on October 3, 2012, in Frankfurt, Germany to develop a consensus on the highest priorities in pediatric HCT. In addition, it explored the creation of an international consortium to develop studies focused on HCT in children and adolescents. This meeting led to the creation of an international HCT network, dubbed the Westhafen Intercontinental Group, to develop worldwide priorities and strategies to address pediatric HCT issues. This review outlines the priorities of need as identified by this consensus group.

Financial and work related impact of cancer in young adult (YA) survivors.

15 Background: YA survivors face challenges unique from those of survivors of childhood cancer or of older adults. The potential impact of cancer or its treatment upon employment and finances for YA survivors is unknown. METHODS Eligibility included diagnosis of malignancy between ages 18-39, 1-5 years from diagnosis and > 1 year from therapy completion. Participants (see Table) were randomly selected from tumor registries of 7 academic institutions; 875 (41% of attempted contacts) enrolled and completed online patient reported outcomes survey related to the effects of cancer/treatment on employment, finances, and cancer-related distress. RESULTS Overall 84% were employed sometime between cancer diagnosis and study enrollment. Of those, 76% took paid time off (40% < 2 mo, 29% 2-5 mo, 31% > 6 mo). Unpaid time off was required by 39% (37% < 2 mo, 25% 2-5 mo, 38% > 6 mo). Other impairments included inability to carry out physical (59%) or mental (55%) tasks required for their job, being less productive (67%), and not pursuing an advancement/promotion (21%). Financial impacts were substantial: 61% worried about medical bills, 31% went into debt related to their cancer/treatment. Of those incurring debt, most (53%) reported this amount to be <

The benefits and burdens of cancer: A prospective, longitudinal cohort study of adolescents and young adults.

10,000, 29%

Health care utilization among long-term cancer survivors.

10,000-

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the “Resilience in Adolescents and Young Adults With Cancer” Study: AYA Engagement and PRO Research

24,999, and 18% >

Late mortality in two-year survivors of hematopoietic cell transplantation (HCT) performed in children and adolescents: Report from the BMT-Survivor Study

25,000; 13 (4.8%) filed for bankruptcy. Chi squares comparing those receiving extensive treatment vs. surgery only indicated greater likelihood of financial debt (10.6, P=.001) and residual distress (13.9, P < .001) if treated with more than surgery. CONCLUSIONS Most YA survivors experience a significant negative impact on employment and finances related to their cancer and treatment, which occurs at a critical time in their careers and at a life phase inherently more financially unstable. Longitudinal follow-up is required to better quantify the long-term burden on work and finances from cancer diagnosed in young adulthood. [Table: see text].