Rochelle R. Smits-Seemann

Barriers to follow-up care among survivors of adolescent and young adult cancer

PurposeThough the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.MethodsWe recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.ResultsSurvivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.ConclusionsThough cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.Implications for cancer survivorsSeveral factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.

A retrospective analysis of treatment‐related hospitalization costs of pediatric, adolescent, and young adult acute lymphoblastic leukemia

This retrospective study examined the longitudinal hospital outcomes (costs adjusted for inflation, hospital days, and admissions) associated with the treatment of pediatric, adolescent, and young adult acute lymphoblastic leukemia (ALL). Patients between one and 26 years of age with newly diagnosed ALL, who were treated at Primary Childrens Hospital (PCH) in Salt Lake City, Utah were included. Treatment and hospitalization data were retrieved from system‐wide cancer registry and enterprise data warehouse. PCH is a member of the Childrens Oncology Group (COG) and patients were treated on, or according to, active COG protocols. Treatment‐related hospital costs of ALL were examined by computing the average annual growth rates (AAGR). Longitudinal regressions identified patient characteristics associated with costs. A total of 505 patients (46.9% female) were included. The majority of patients had B‐cell lineage ALL, 6.7% had T‐ALL, and the median age at diagnosis was 4 years. Per‐patient, first‐year ALL hospitalization costs at PCH rose from

ReCAP: Gaps in Insurance Coverage for Pediatric Patients With Acute Lymphoblastic Leukemia

24,197 in 1998 to

Infection-related mortality in Hispanic and non-Hispanic children with cancer

37,924 in 2012. The AAGRs were 6.1, 13.0, and 7.6% for total, pharmacy, and room and care costs, respectively. Average days (AAGR = 5.2%) and admissions (AAGR = 3.8%) also demonstrated an increasing trend. High‐risk patients had 47% higher costs per 6‐month period in the first 5 years from diagnosis than standard‐risk patients (P < 0.001). Similarly, relapsed ALL and stem cell transplantations were associated with significantly higher costs than nonrelapsed and no transplantations, respectively (P < 0.001). Increasing treatment‐related costs of ALL demonstrate an area for further investigation. Value‐based interventions such as identifying low‐risk fever and neutropenia patients and managing them in outpatient settings should be evaluated for reducing the hospital burden of ALL.

Adolescent and Young Adult Cancer Survivors' Valuation of Post-Treatment Recommended Care

PURPOSE Continuous insurance coverage is an important component of effective health care. Evaluation of insurance gaps in pediatric cancer care is an understudied area. METHODS We conducted a retrospective analysis of payer data from outpatient oncology encounters at Primary Childrens Hospital (Salt Lake City, UT) over the first 2 years of therapy for pediatric patients with acute lymphoblastic leukemia diagnosed from 1998 to 2010 (N = 380). Using logistic regression, we evaluated demographic and clinical predictors (age at diagnosis, sex, ethnicity, high/standard acute lymphoblastic leukemia risk, and rural/urban county of residence at diagnosis) of a gap in health insurance. RESULTS The median age at diagnosis was 4 years (interquartile range, 3 to 8 years), and 172 patients (45%) were girls. In the first 2 years of treatment, 45 patients (12%) experienced a gap in health insurance. The odds of having a gap in insurance coverage decreased by 16% each year from 1998 to 2010 (odds ratio, 0.84; 95% CI, 0.76 to 0.93; test for trend, P = .001). Public insurance at diagnosis was associated with a four-fold increased likelihood of experiencing an insurance gap (odds ratio, 4.09; 95% CI, 1.98 to 8.44; P < .001) compared with patients with private insurance at diagnosis. CONCLUSION Gaps in insurance coverage during pediatric cancer treatment are not uncommon, which highlights the importance of discussing insurance status at diagnosis and throughout a patients treatment course to help patients and their families prepare for any changes and avoid unnecessary financial burden. Future research should focus on examining the effect of insurance gaps on patient outcomes and evaluating likelihood of gaps in insurance after health care reform.

Risk of hospitalization among survivors of childhood and adolescent acute lymphoblastic leukemia compared to siblings and a general population sample

Hispanic children with cancer experience poorer survival than their White counterparts. Infection is a known cause of cancer‐related mortality; however, little is known about the risk of infection‐related death among Hispanic children with cancer. We examine the association of Hispanic ethnicity with infection‐related mortality and life‐threatening events among children with cancer.

Conditional survival of pediatric, adolescent, and young adult soft tissue sarcoma and bone tumor patients

PURPOSE Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treatment care using focus groups and a willingness to pay (WTP) survey. WTP, a measure of value, indicates the dollar amount individuals are willing to pay to use a service. METHODS Participants were recruited through the Utah Cancer Registry. N = 28 survivors diagnosed with cancer at ages 15-39 and currently aged ≥18 participated in focus groups, and N = 4 in phone interviews (participation rate = 50%). All participants responded to a demographic survey and WTP questions based on one-time and monthly payments for annual visits. Focus group participants responded to an open-ended question on the value of follow-up care. Interval regressions identified factors associated with WTP. Qualitative analysis summarized themes for the open-ended question. RESULTS Focus group participants reported valuing follow-up care as it brings peace of mind and helps them manage their health. Yet, 38% reported not having a cancer-related visit in the previous year. Only 27% and 43% of survivors agreed to pay any one-time and monthly payments, respectively. The monthly payment mean WTP was

Follow-Up Care Provider Preferences of Adolescent and Young Adult Cancer Survivors

41 (95% confidence interval [CI]: 31-84), equating to

An investigation of survivorship clinic attendance among childhood cancer survivors living in a five-state rural region

494 annually, which is greater than the mean WTP for one-time payment (

Do survivors of adolescent and young adult cancer value follow-up cancer care?

362, 95% CI: 293-432, p < 0.001), suggesting that survivors may prefer monthly payments. Several factors, including being female and in better health, predicted higher WTP. CONCLUSION Many AYA cancer survivors report not visiting their doctors annually for post-treatment care despite verbally valuing care. Models that demonstrate high quality and distribute costs over time should be evaluated to encourage survivors to receive recommended care.