Anne Kirchhoff - Academia.edu (original) (raw)
Papers by Anne Kirchhoff
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 20, 2018
In addition to the long-term physical and psychological sequelae of cancer therapy, adult survivo... more In addition to the long-term physical and psychological sequelae of cancer therapy, adult survivors of childhood cancer are at an elevated risk for financial hardship. Financial hardship can have material, psychological, and behavioral effects, including high out-of-pocket medical costs, asset depletion and debt, limitations in or inability to work, job lock, elevated stress and worry, and a delaying or forgoing of medical care because of cost. Most financial hardship research has been conducted in survivors of adult cancers. The few studies focused on childhood cancer survivors have shown that these individuals are at elevated risk for having difficulties with affording needed health care and report high out-of-pocket medical expenses, difficulty with paying medical bills, or consideration of filing for bankruptcy. Childhood cancer survivors are more likely to be unable to work or to have missed work because of poor health. They are more likely to report difficulties with obtaining...
Cancer, Jan 17, 2016
The current study was conducted to examine the prevalence and correlates of mental distress among... more The current study was conducted to examine the prevalence and correlates of mental distress among survivors of adolescent and young adult (AYA) cancer and a comparison group. A total of 875 AYA cancer survivors who were diagnosed between the ages of 15 and 39 years and who were at least 5 years from their initial diagnosis were identified from the 2013 and 2014 National Health Interview Surveys. A comparison group was created. The Kessler nonspecific mental/psychological distress scale was used to examine none/low, moderate, and severe distress. The issues of whether individuals talked to mental health professionals within the previous year and if they could afford mental health care also were examined. Variables (ie, demographics, behavioral [eg, smoking status], comorbidity, and mental health visits) associated with distress among the 2 groups were identified using multinomial logistic regressions. Survivors reported mental distress more often than the comparison group (moderate: ...
Journal of Cancer Survivorship, 2016
Current studies report mixed results in health status and health behaviors after a diagnosis of c... more Current studies report mixed results in health status and health behaviors after a diagnosis of cancer. The aim of our study is to investigate potential differences in lifestyle factors among cancer survivors and cancer-free individuals in a prospective cohort study conducted in the United States. Using data from the Prostate, Lung, Colorectal and Ovarian (PLCO) Trial, 10,133 cancer survivors were identified and compared to 81,992 participants without cancer to evaluate differences in body mass index (BMI), smoking, NSAID use, and physical activity. Cancer survivors, compared to the cancer-free, were significantly less likely to engage in physical activity (odds ratio (OR) = 0.82, 95% CI = 0.77-0.88). Compared to those who were obese at baseline, cancer survivors were more likely to be at normal BMI at follow-up compared to the cancer-free (OR = 1.90, 95% CI = 1.42-2.54). Cancer survivors were less likely to report regular aspirin use as compared to the cancer-free population (OR = 0.86, 95 % CI = 0.82-0.92). Of the current smokers, cancer survivors were more likely to be former smokers at follow-up compared to the cancer-free (OR = 1.50, 95% CI = 1.30-1.74). Upon stratification by baseline health markers, cancer survivors practice healthier lifestyle habits such as smoking cessation and maintenance of a healthy weight. However, cancer survivors are less likely to be physically active as compared to cancer-free individuals, regardless of baseline practices. For cancer survivors who reported poor health status and behaviors at baseline, a cancer diagnosis may encourage the practice of healthier lifestyle behaviors.
Journal of Adolescent and Young Adult Oncology, 2016
To explore adolescent and young adult (AYA) cancer survivors' int... more To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors.
Journal of cancer education : the official journal of the American Association for Cancer Education, Jan 3, 2016
Assessments of cancer survivors' health-related needs are often limited to national estimates... more Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs...
Journal of Cancer Survivorship, 2016
We describe national patterns of health insurance coverage and care accessibility and affordabili... more We describe national patterns of health insurance coverage and care accessibility and affordability in a national sample of adult childhood cancer survivors (CCS) compared to adults without cancer. Using data from the 2010-2014 National Health Interview Survey (NHIS), we selected a sample of all CCS age 21 to 65 years old and a 1:3 matched sample of controls without a history of cancer. We examined insurance coverage, care accessibility and affordability in CCS and controls. We tested for differences in the groups in bivariate analyses and multivariable logistic regression models. Of all respondents age 21-65 in the full NHIS sample, 443 (0.35 %) were CCS. Fewer CCS were insured (76.4 %) compared to controls (81.4 %, p = 0.067). Significantly more CCS reported delaying medical care (24.7 vs 13.0 %), needing but not getting medical care in the previous 12 months (20.0 vs 10.0 %), and having trouble paying medical bills (40.3 vs 19.7 %) compared to controls (p < 0.0001 for all). More CCS reported trouble with care affordability in the previous 12 months compared to controls on six categories of care and for a combined measure of affordability (p < 0.0001 for composite of all). Adjusted analyses demonstrated that these differences comparing CCS to controls remained significant. CCS report problems with health care accessibility and affordability. These analyses support the development of policies to assure that CCS have access to affordable services. Efforts to improve access to high-quality and affordable insurance for CCS may help reduce the gaps in getting medical care and problems with affordability. Health care providers should be aware that such problems exist and should discuss affordability and ability to obtain care with patients.
Journal of Adolescent and Young Adult Oncology, 2016
Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We... more Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We examine dental care use and barriers among long-term survivors of adolescent and young adult (AYA) cancer in comparison to individuals without a history of cancer. The 2008-2012 Medical Expenditure Panel Survey (MEPS) identified 1216 individuals diagnosed with cancer at AYA ages (15-39 years), who were at least 5 years from diagnosis. A comparison group was matched using age, sex, and other factors. We evaluated self-reported dental visits in the previous 12 months, and inability and delay in receiving necessary dental care among survivors and the comparison group. Furthermore, individual factors associated with dental care use were identified using multivariable logistic regressions. Of survivors, 60.86% reported no dental visits in the previous year compared to 51.96% of the comparison individuals (p < 0.001). Survivors were more likely to report inability (10.71% vs. 6.29%, p = 0.001) and delay (8.12% vs. 4.45%, p = 0.001) in getting necessary dental care than the comparison group. Notably, survivors without dental insurance were more likely to report inability and delay. Female survivors were more likely to use dental care than males (odds ratio = 1.76, 95% confidence interval 1.15-2.71, p = 0.01). Hispanic survivors, those diagnosed at younger ages, and uninsured survivors were less likely to have at least one dental visit. Survivors of AYA cancer need timely surveillance to manage late effects, including dental complications. Yet, these survivors, particularly those who are uninsured, delay dental care more often than individuals from the general population. Survivor-specific interventions are needed to reduce dental care barriers.
Joint Commission Journal on Quality and Patient Safety Joint Commission Resources, Mar 1, 2008
Cancer Epidemiology, 2015
Few studies have evaluated conditional survival (probability of surviving y years given patients ... more Few studies have evaluated conditional survival (probability of surviving y years given patients have already survived x years) for pediatric/adolescent patients diagnosed with cancer. To provide more accurate information on ongoing survival, we evaluate conditional survival for pediatric and adolescent patients with cancer. The statewide Utah Cancer Registry identified 3344 patients born in Utah diagnosed with cancer at ages 0-21 years, from 1973 to 2009. The Utah Population Database provided demographic information. We estimated five-year conditional survival at diagnosis, and one and three years after diagnosis, by risk factors such as cancer type, sex, diagnosis age and treatment era (1973-1994 vs. 1995-2009). Conditional survival estimates at one (85.1%, 95% CI: 83.7-86.5) and three years (92.9%, 95% CI: 91.8-93.9) after diagnosis were significantly higher than survival at diagnosis (77.2%, 95% CI: 75.6-78.9), although results varied by cancer type and initial prognosis. Diagnosis age affected survival for cancers where age is a risk factor. For example, five-year survival at one year after diagnosis was higher for younger (≤18 months of age) patients compared to older (>18 months) patients with neuroblastoma (95.4%, 95% CI: 90.9-99.9 vs. 56.8%, 95% CI: 41.8-71.7, p<0.001). Conditional survival improved over time for many cancers. Minimal differences were observed by sex. Substantial improvements were observed in conditional survival at one and three years after diagnosis compared with survival at diagnosis. Several risk factors affected these outcomes. Clearer understandings of survival will help in administering effective survivorship care and decreasing prognosis-related anxiety/stress for patients and families.
Journal of Adolescent and Young Adult Oncology, 2015
This study uses qualitative methods to identify barriers to and facilitators of exercise and heal... more This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18-39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Survivors (M age = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors.
Journal of Cancer Education, 2015
Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) fo... more Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) for optimal health management, yet clinical delivery of SCPs varies. We evaluated oncology providers' familiarity with and preferences for delivering SCPs to inform the implementation of a future SCP program at our institution. From November 2013 to April 2014, oncology providers from the Primary Children's Hospital in Salt Lake City, UT, completed a survey (n = 41) and a 45-min focus group (n = 18). Participants reported their familiarity with and training in SCP guidelines, opinions on SCPs, and barriers to delivering SCPs. As a secondary analysis, we examined differences in survey responses between physicians and nurses with Fisher's exact tests. Focus group transcripts and open-ended survey responses were content analyzed. Participants reported high familiarity with late effects of cancer treatment (87.8 %) and follow-up care that cancer survivors should receive (82.5 %). Few providers had delivered an SCP (oncologists 35.3 % and nurses 5.0 %; p = 0.03). Barriers to providing SCPs included lack of knowledge (66.7 %), SCP delivery is not expected in their clinic (53.9 %), and no champion (48.7 %). In qualitative comments, providers expressed that patient age variation complicated SCP delivery. Participants supported testing an SCP intervention program (95.1 %) and felt this should be a team-based approach. Strategies for optimal delivery of SCPs are needed. Participants supported testing an SCP program to improve the quality of patient care. Team-based approaches, including nurses and physicians, that incorporate provider training on and support for SCP delivery are needed to improve pediatric cancer care.
Joint Commission journal on quality and patient safety / Joint Commission Resources, 2008
Despite significant interest in the business case for quality improvement (QI), there are few eva... more Despite significant interest in the business case for quality improvement (QI), there are few evaluations of the impact of QI programs on outpatient organizations. The financial impact of the Health Disparities Collaboratives (HDC), a national QI program conducted in community health centers (HCs), was examined. Chief executive officers (CEOs) from health centers in two U.S. regions that participated in the Diabetes HDC (N = 74) were surveyed. In case studies of five selected centers, program costs/revenues, clinical costs/revenues, overall center financial health, and indirect costs/benefits were assessed. CEOs were divided on the HDC's overall effect on finances (38%, worsened; 48%, no change; 14%, improved). Case studies showed that the HDC represented a new administrative cost ($6-$22/patient, year 1) without a regular revenue source. In centers with billing data, the balance of diabetes-related clinical costs/revenues and payor mix did not clearly worsen or improve with the...
The Journal of Rural Health, 2014
We evaluated whether primary care physicians (PCPs) from urban and rural practices differ on atti... more We evaluated whether primary care physicians (PCPs) from urban and rural practices differ on attitudes and behaviors related to quality improvement (QI) activities, patient relationships, and professionalism/self-regulation. Data from a national survey that assessed physician attitudes and behaviors based on the Physician Charter on Medical Professionalism were used. Of the 1,891 survey respondents, N = 840 were PCPs (n = 274 family medicine (response rate = 67.5%); n = 257 general internal medicine (60.8%); and n = 309 pediatricians (72.7%)). Using Rural-Urban Commuting Area (RUCA) codes, PCPs were classified as urban and rural according to their practice ZIP code. A total of n = 691 physicians were urban and n = 127 rural. Attitudes regarding participating in QI did not differ by practice location; however, rural PCPs were more likely to have reviewed an other physician's records for QI than urban PCPs (65.6% vs 48.0%, P < .001). Rural physicians were more likely to agree that physicians should talk with their patients about the cost of care than urban PCPs (40.5% vs 29.2%, P = .02). While all PCPs endorsed attitudes regarding the importance of professional behaviors (eg, reporting impaired/incompetent colleagues, disclosing medical errors) at generally similar levels, their behaviors differed. More rural physicians had a personal knowledge of an impaired/incompetent physician than urban physicians (20.7% vs 12.7%, P = .02). PCPs from rural and urban areas share similar attitudes regarding the importance of participating in QI and fulfilling professional responsibilities. However, certain behaviors (eg, knowledge of impaired colleagues) do differ. These results should be confirmed in larger studies of rural PCPs.
Journal of Cancer Survivorship, 2012
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 10, 2015
233 Background: Cancer diagnosis and treatment can be associated with crippling financial burden,... more 233 Background: Cancer diagnosis and treatment can be associated with crippling financial burden, but whether this extends long-term into survivorship is unknown. We sought to examine survivors' out-of-pocket (OOP) medical costs and their effects. From May 2011-April 2012, we surveyed a randomly selected sample of cancer survivors from the Childhood Cancer Survivor Study to assess survivors' 1) financial distress, 2) monetary insecurity and 3) cost-motivated health behavior in the past year. We estimated the proportion of survivors with high OOP costs (≥10% of their annual household income). To determine associations between high OOP costs and the 3 outcomes of financial burden noted above, we used logistic regression to calculate odds ratios (OR) and 95% confidence intervals (CI) for each of the outcomes, adjusting for sex, marital status, insurance, employment and income. Of 1,101 mailed surveys, we received 698 (63% response) with a median age of 39 years (range 25-60) an...
Pediatric blood & cancer, 2016
Childhood cancer survivors can have a high burden of chronic conditions related to cancer treatme... more Childhood cancer survivors can have a high burden of chronic conditions related to cancer treatment, some of which are debilitating or potentially life-threatening. Much remains to be learned about late effects in bone and soft tissue sarcoma survivors. The Utah Cancer Registry was used to identify survivors of bone (N = 71) and soft tissue sarcomas (N = 98) who were diagnosed at ages 0-20 years between 1973 and 2007 and were alive at least 5 years after diagnosis. We selected an age-sex-matched comparison cohort (N = 934). Hospitalizations from 1996 to 2012 were extracted from the Utah Department of Health statewide inpatient hospitalization discharge records. Cox, Poisson, and Gamma regressions were used to evaluate the risk of hospitalization, rate of admission, and length of stay for survivors versus the comparison cohort. Primary ICD-9 codes defined the most common reasons for hospitalizations. The hazard ratio (HR) of any hospitalization was higher for survivors in reference t...
Journal of Adolescent and Young Adult Oncology, 2016
Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treat... more 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. 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. 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 41(9541 (95% confidence interval [CI]: 31-84), equating to 41(95494 annually, which is greater than the mean WTP for one-time payment ($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. 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.
Journal of Cancer Survivorship, 2016
Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) c... more Though 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. We 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. Survivors 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. Though 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. Several 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.
Journal of adolescent and young adult oncology, Jan 15, 2016
This report examines facilitators and barriers to independence for a sample of survivors of child... more This report examines facilitators and barriers to independence for a sample of survivors of childhood and adolescent cancer. We conducted 53 semistructured, in-depth interviews with adult survivors of cancer diagnosed at ages 0-20 years. Researchers qualitatively coded themes to reflect responses to the question inquiring about how cancer may have affected survivors' independence from their parents. Among the 21 survivors who reported that cancer affected their independence, themes included challenges and motivators to independence following cancer. Challenges to independence included overprotection by parents, financial dependence, problems in healthcare decision-making, and emotional dependence. Motivators included self-confidence, desire for independence, parental support, and inadequate family support. Supportive care for survivors of childhood and adolescent cancers should include services to help them in their journey toward developmental independence.
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 20, 2018
In addition to the long-term physical and psychological sequelae of cancer therapy, adult survivo... more In addition to the long-term physical and psychological sequelae of cancer therapy, adult survivors of childhood cancer are at an elevated risk for financial hardship. Financial hardship can have material, psychological, and behavioral effects, including high out-of-pocket medical costs, asset depletion and debt, limitations in or inability to work, job lock, elevated stress and worry, and a delaying or forgoing of medical care because of cost. Most financial hardship research has been conducted in survivors of adult cancers. The few studies focused on childhood cancer survivors have shown that these individuals are at elevated risk for having difficulties with affording needed health care and report high out-of-pocket medical expenses, difficulty with paying medical bills, or consideration of filing for bankruptcy. Childhood cancer survivors are more likely to be unable to work or to have missed work because of poor health. They are more likely to report difficulties with obtaining...
Cancer, Jan 17, 2016
The current study was conducted to examine the prevalence and correlates of mental distress among... more The current study was conducted to examine the prevalence and correlates of mental distress among survivors of adolescent and young adult (AYA) cancer and a comparison group. A total of 875 AYA cancer survivors who were diagnosed between the ages of 15 and 39 years and who were at least 5 years from their initial diagnosis were identified from the 2013 and 2014 National Health Interview Surveys. A comparison group was created. The Kessler nonspecific mental/psychological distress scale was used to examine none/low, moderate, and severe distress. The issues of whether individuals talked to mental health professionals within the previous year and if they could afford mental health care also were examined. Variables (ie, demographics, behavioral [eg, smoking status], comorbidity, and mental health visits) associated with distress among the 2 groups were identified using multinomial logistic regressions. Survivors reported mental distress more often than the comparison group (moderate: ...
Journal of Cancer Survivorship, 2016
Current studies report mixed results in health status and health behaviors after a diagnosis of c... more Current studies report mixed results in health status and health behaviors after a diagnosis of cancer. The aim of our study is to investigate potential differences in lifestyle factors among cancer survivors and cancer-free individuals in a prospective cohort study conducted in the United States. Using data from the Prostate, Lung, Colorectal and Ovarian (PLCO) Trial, 10,133 cancer survivors were identified and compared to 81,992 participants without cancer to evaluate differences in body mass index (BMI), smoking, NSAID use, and physical activity. Cancer survivors, compared to the cancer-free, were significantly less likely to engage in physical activity (odds ratio (OR) = 0.82, 95% CI = 0.77-0.88). Compared to those who were obese at baseline, cancer survivors were more likely to be at normal BMI at follow-up compared to the cancer-free (OR = 1.90, 95% CI = 1.42-2.54). Cancer survivors were less likely to report regular aspirin use as compared to the cancer-free population (OR = 0.86, 95 % CI = 0.82-0.92). Of the current smokers, cancer survivors were more likely to be former smokers at follow-up compared to the cancer-free (OR = 1.50, 95% CI = 1.30-1.74). Upon stratification by baseline health markers, cancer survivors practice healthier lifestyle habits such as smoking cessation and maintenance of a healthy weight. However, cancer survivors are less likely to be physically active as compared to cancer-free individuals, regardless of baseline practices. For cancer survivors who reported poor health status and behaviors at baseline, a cancer diagnosis may encourage the practice of healthier lifestyle behaviors.
Journal of Adolescent and Young Adult Oncology, 2016
To explore adolescent and young adult (AYA) cancer survivors' int... more To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors.
Journal of cancer education : the official journal of the American Association for Cancer Education, Jan 3, 2016
Assessments of cancer survivors' health-related needs are often limited to national estimates... more Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs...
Journal of Cancer Survivorship, 2016
We describe national patterns of health insurance coverage and care accessibility and affordabili... more We describe national patterns of health insurance coverage and care accessibility and affordability in a national sample of adult childhood cancer survivors (CCS) compared to adults without cancer. Using data from the 2010-2014 National Health Interview Survey (NHIS), we selected a sample of all CCS age 21 to 65 years old and a 1:3 matched sample of controls without a history of cancer. We examined insurance coverage, care accessibility and affordability in CCS and controls. We tested for differences in the groups in bivariate analyses and multivariable logistic regression models. Of all respondents age 21-65 in the full NHIS sample, 443 (0.35 %) were CCS. Fewer CCS were insured (76.4 %) compared to controls (81.4 %, p = 0.067). Significantly more CCS reported delaying medical care (24.7 vs 13.0 %), needing but not getting medical care in the previous 12 months (20.0 vs 10.0 %), and having trouble paying medical bills (40.3 vs 19.7 %) compared to controls (p < 0.0001 for all). More CCS reported trouble with care affordability in the previous 12 months compared to controls on six categories of care and for a combined measure of affordability (p < 0.0001 for composite of all). Adjusted analyses demonstrated that these differences comparing CCS to controls remained significant. CCS report problems with health care accessibility and affordability. These analyses support the development of policies to assure that CCS have access to affordable services. Efforts to improve access to high-quality and affordable insurance for CCS may help reduce the gaps in getting medical care and problems with affordability. Health care providers should be aware that such problems exist and should discuss affordability and ability to obtain care with patients.
Journal of Adolescent and Young Adult Oncology, 2016
Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We... more Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We examine dental care use and barriers among long-term survivors of adolescent and young adult (AYA) cancer in comparison to individuals without a history of cancer. The 2008-2012 Medical Expenditure Panel Survey (MEPS) identified 1216 individuals diagnosed with cancer at AYA ages (15-39 years), who were at least 5 years from diagnosis. A comparison group was matched using age, sex, and other factors. We evaluated self-reported dental visits in the previous 12 months, and inability and delay in receiving necessary dental care among survivors and the comparison group. Furthermore, individual factors associated with dental care use were identified using multivariable logistic regressions. Of survivors, 60.86% reported no dental visits in the previous year compared to 51.96% of the comparison individuals (p < 0.001). Survivors were more likely to report inability (10.71% vs. 6.29%, p = 0.001) and delay (8.12% vs. 4.45%, p = 0.001) in getting necessary dental care than the comparison group. Notably, survivors without dental insurance were more likely to report inability and delay. Female survivors were more likely to use dental care than males (odds ratio = 1.76, 95% confidence interval 1.15-2.71, p = 0.01). Hispanic survivors, those diagnosed at younger ages, and uninsured survivors were less likely to have at least one dental visit. Survivors of AYA cancer need timely surveillance to manage late effects, including dental complications. Yet, these survivors, particularly those who are uninsured, delay dental care more often than individuals from the general population. Survivor-specific interventions are needed to reduce dental care barriers.
Joint Commission Journal on Quality and Patient Safety Joint Commission Resources, Mar 1, 2008
Cancer Epidemiology, 2015
Few studies have evaluated conditional survival (probability of surviving y years given patients ... more Few studies have evaluated conditional survival (probability of surviving y years given patients have already survived x years) for pediatric/adolescent patients diagnosed with cancer. To provide more accurate information on ongoing survival, we evaluate conditional survival for pediatric and adolescent patients with cancer. The statewide Utah Cancer Registry identified 3344 patients born in Utah diagnosed with cancer at ages 0-21 years, from 1973 to 2009. The Utah Population Database provided demographic information. We estimated five-year conditional survival at diagnosis, and one and three years after diagnosis, by risk factors such as cancer type, sex, diagnosis age and treatment era (1973-1994 vs. 1995-2009). Conditional survival estimates at one (85.1%, 95% CI: 83.7-86.5) and three years (92.9%, 95% CI: 91.8-93.9) after diagnosis were significantly higher than survival at diagnosis (77.2%, 95% CI: 75.6-78.9), although results varied by cancer type and initial prognosis. Diagnosis age affected survival for cancers where age is a risk factor. For example, five-year survival at one year after diagnosis was higher for younger (≤18 months of age) patients compared to older (>18 months) patients with neuroblastoma (95.4%, 95% CI: 90.9-99.9 vs. 56.8%, 95% CI: 41.8-71.7, p<0.001). Conditional survival improved over time for many cancers. Minimal differences were observed by sex. Substantial improvements were observed in conditional survival at one and three years after diagnosis compared with survival at diagnosis. Several risk factors affected these outcomes. Clearer understandings of survival will help in administering effective survivorship care and decreasing prognosis-related anxiety/stress for patients and families.
Journal of Adolescent and Young Adult Oncology, 2015
This study uses qualitative methods to identify barriers to and facilitators of exercise and heal... more This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18-39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Survivors (M age = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors.
Journal of Cancer Education, 2015
Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) fo... more Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) for optimal health management, yet clinical delivery of SCPs varies. We evaluated oncology providers' familiarity with and preferences for delivering SCPs to inform the implementation of a future SCP program at our institution. From November 2013 to April 2014, oncology providers from the Primary Children's Hospital in Salt Lake City, UT, completed a survey (n = 41) and a 45-min focus group (n = 18). Participants reported their familiarity with and training in SCP guidelines, opinions on SCPs, and barriers to delivering SCPs. As a secondary analysis, we examined differences in survey responses between physicians and nurses with Fisher's exact tests. Focus group transcripts and open-ended survey responses were content analyzed. Participants reported high familiarity with late effects of cancer treatment (87.8 %) and follow-up care that cancer survivors should receive (82.5 %). Few providers had delivered an SCP (oncologists 35.3 % and nurses 5.0 %; p = 0.03). Barriers to providing SCPs included lack of knowledge (66.7 %), SCP delivery is not expected in their clinic (53.9 %), and no champion (48.7 %). In qualitative comments, providers expressed that patient age variation complicated SCP delivery. Participants supported testing an SCP intervention program (95.1 %) and felt this should be a team-based approach. Strategies for optimal delivery of SCPs are needed. Participants supported testing an SCP program to improve the quality of patient care. Team-based approaches, including nurses and physicians, that incorporate provider training on and support for SCP delivery are needed to improve pediatric cancer care.
Joint Commission journal on quality and patient safety / Joint Commission Resources, 2008
Despite significant interest in the business case for quality improvement (QI), there are few eva... more Despite significant interest in the business case for quality improvement (QI), there are few evaluations of the impact of QI programs on outpatient organizations. The financial impact of the Health Disparities Collaboratives (HDC), a national QI program conducted in community health centers (HCs), was examined. Chief executive officers (CEOs) from health centers in two U.S. regions that participated in the Diabetes HDC (N = 74) were surveyed. In case studies of five selected centers, program costs/revenues, clinical costs/revenues, overall center financial health, and indirect costs/benefits were assessed. CEOs were divided on the HDC's overall effect on finances (38%, worsened; 48%, no change; 14%, improved). Case studies showed that the HDC represented a new administrative cost ($6-$22/patient, year 1) without a regular revenue source. In centers with billing data, the balance of diabetes-related clinical costs/revenues and payor mix did not clearly worsen or improve with the...
The Journal of Rural Health, 2014
We evaluated whether primary care physicians (PCPs) from urban and rural practices differ on atti... more We evaluated whether primary care physicians (PCPs) from urban and rural practices differ on attitudes and behaviors related to quality improvement (QI) activities, patient relationships, and professionalism/self-regulation. Data from a national survey that assessed physician attitudes and behaviors based on the Physician Charter on Medical Professionalism were used. Of the 1,891 survey respondents, N = 840 were PCPs (n = 274 family medicine (response rate = 67.5%); n = 257 general internal medicine (60.8%); and n = 309 pediatricians (72.7%)). Using Rural-Urban Commuting Area (RUCA) codes, PCPs were classified as urban and rural according to their practice ZIP code. A total of n = 691 physicians were urban and n = 127 rural. Attitudes regarding participating in QI did not differ by practice location; however, rural PCPs were more likely to have reviewed an other physician's records for QI than urban PCPs (65.6% vs 48.0%, P < .001). Rural physicians were more likely to agree that physicians should talk with their patients about the cost of care than urban PCPs (40.5% vs 29.2%, P = .02). While all PCPs endorsed attitudes regarding the importance of professional behaviors (eg, reporting impaired/incompetent colleagues, disclosing medical errors) at generally similar levels, their behaviors differed. More rural physicians had a personal knowledge of an impaired/incompetent physician than urban physicians (20.7% vs 12.7%, P = .02). PCPs from rural and urban areas share similar attitudes regarding the importance of participating in QI and fulfilling professional responsibilities. However, certain behaviors (eg, knowledge of impaired colleagues) do differ. These results should be confirmed in larger studies of rural PCPs.
Journal of Cancer Survivorship, 2012
Journal of clinical oncology : official journal of the American Society of Clinical Oncology, Jan 10, 2015
233 Background: Cancer diagnosis and treatment can be associated with crippling financial burden,... more 233 Background: Cancer diagnosis and treatment can be associated with crippling financial burden, but whether this extends long-term into survivorship is unknown. We sought to examine survivors' out-of-pocket (OOP) medical costs and their effects. From May 2011-April 2012, we surveyed a randomly selected sample of cancer survivors from the Childhood Cancer Survivor Study to assess survivors' 1) financial distress, 2) monetary insecurity and 3) cost-motivated health behavior in the past year. We estimated the proportion of survivors with high OOP costs (≥10% of their annual household income). To determine associations between high OOP costs and the 3 outcomes of financial burden noted above, we used logistic regression to calculate odds ratios (OR) and 95% confidence intervals (CI) for each of the outcomes, adjusting for sex, marital status, insurance, employment and income. Of 1,101 mailed surveys, we received 698 (63% response) with a median age of 39 years (range 25-60) an...
Pediatric blood & cancer, 2016
Childhood cancer survivors can have a high burden of chronic conditions related to cancer treatme... more Childhood cancer survivors can have a high burden of chronic conditions related to cancer treatment, some of which are debilitating or potentially life-threatening. Much remains to be learned about late effects in bone and soft tissue sarcoma survivors. The Utah Cancer Registry was used to identify survivors of bone (N = 71) and soft tissue sarcomas (N = 98) who were diagnosed at ages 0-20 years between 1973 and 2007 and were alive at least 5 years after diagnosis. We selected an age-sex-matched comparison cohort (N = 934). Hospitalizations from 1996 to 2012 were extracted from the Utah Department of Health statewide inpatient hospitalization discharge records. Cox, Poisson, and Gamma regressions were used to evaluate the risk of hospitalization, rate of admission, and length of stay for survivors versus the comparison cohort. Primary ICD-9 codes defined the most common reasons for hospitalizations. The hazard ratio (HR) of any hospitalization was higher for survivors in reference t...
Journal of Adolescent and Young Adult Oncology, 2016
Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treat... more 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. 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. 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 41(9541 (95% confidence interval [CI]: 31-84), equating to 41(95494 annually, which is greater than the mean WTP for one-time payment ($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. 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.
Journal of Cancer Survivorship, 2016
Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) c... more Though 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. We 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. Survivors 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. Though 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. Several 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.
Journal of adolescent and young adult oncology, Jan 15, 2016
This report examines facilitators and barriers to independence for a sample of survivors of child... more This report examines facilitators and barriers to independence for a sample of survivors of childhood and adolescent cancer. We conducted 53 semistructured, in-depth interviews with adult survivors of cancer diagnosed at ages 0-20 years. Researchers qualitatively coded themes to reflect responses to the question inquiring about how cancer may have affected survivors' independence from their parents. Among the 21 survivors who reported that cancer affected their independence, themes included challenges and motivators to independence following cancer. Challenges to independence included overprotection by parents, financial dependence, problems in healthcare decision-making, and emotional dependence. Motivators included self-confidence, desire for independence, parental support, and inadequate family support. Supportive care for survivors of childhood and adolescent cancers should include services to help them in their journey toward developmental independence.