Pediatr Blood Cancer 2015;62:456–462
Comparison of Survival at Adult Versus Pediatric Treatment Centers for Rare Pediatric Tumors in an Adolescent and Young Adult (AYA) Population in the State of Georgia Thomas Cash, MD, MSc,1* Muna Qayed, MD, MSc,1 Kevin C. Ward, PhD,2 Ann C. Mertens, PhD,1 and Louis Rapkin, MD1 Background. The type of treatment center where 15–21-year-old adolescent and young adult (AYA) patients with rare pediatric tumors achieve their best clinical outcome is unknown. Procedure. We performed a retrospective analysis using the Georgia Cancer Registry (GCR) of 15–21-year old patients with a malignant, rare pediatric tumor diagnosed during the period from 2000–2009. Patients were identified as being treated at one of five Georgia pediatric cancer centers or at an adult center. Data were analyzed for 10 year overall survival, patient characteristics associated with death, and patient characteristics present at diagnosis associated with choice of treatment center. Results. There was a total of 479 patients in our final study population, of which 379 (79.1%) were treated at an adult center and 100 (20.9%) were treated at a pediatric center. Patients
treated at an adult center had a 10 year overall survival of 86% compared to 85% for patients treated at a pediatric center (P ¼ 0.31). Race and poverty were not significantly associated with death. Patients with nasopharyngeal carcinoma (OR ¼ 7.38; 95% CI ¼ 2.30–23.75) and ‘other carcinomas’ (OR ¼ 2.64; 95% CI ¼ 1.25– 5.60) were more likely to be treated at a pediatric center. Patients with higher-stage disease (OR ¼ 4.24; 95% CI ¼ 1.71–10.52) and higher poverty (OR ¼ 2.32; 95% CI ¼ 1.23–4.37) were also more likely to be treated at a pediatric center. Conclusion. Our data suggest that there is no difference in survival for 15–21-year old patients with rare pediatric tumors when treated at an adult or pediatric center. Pediatr Blood Cancer 2015;62:456–462. # 2014 Wiley Periodicals, Inc.
Key words: adolescent and young adult oncology; carcinoma; cancer outcomes; melanoma; rare pediatric tumors; survival comparison
INTRODUCTION Over the last three decades adolescent and young adult (AYA) patients with cancer have not experienced the same improvement in survival as that seen in younger or older patients. During the same time period the incidence of cancer increased more rapidly for AYA patients than any other age group [1]. Part of the challenge in treating AYA patients is deciding where they should be treated for their malignancy. This is difficult for the entire 15–29-year old AYA population, but becomes even more challenging for the subset of AYA patients that are 15–21 years of age, because they could be treated at either a pediatric or adult center. The discrepancy in survival, often referred to as the AYA Gap, has also occurred in part due to the lack of recognition that this population requires focused attention to the unique biology of its malignancies and to its psychosocial and supportive care needs [2,3]. Due to the lack of survival improvement for this population of patients, it is critical to better understand where they can achieve their optimal clinical outcomes in order to maximize treatment strategies. In pediatric oncology, much of the improvement in survival has come as a result of patients being treated on cooperative group clinical trials. Furthermore, it has been observed that the single factor most highly correlated with the AYA gap is lack of participation in clinical trials [4]. Historically, more than 90% of patients younger than 15 years are treated at institutions that participate in NCI-sponsored clinical trials with 70–80% of patients being treated on an open study [4]. In contrast, only 20% of patients who are 15–19 years of age are treated at such institutions, and only 10% of patients in this age group participate in clinical trials [5]. The numbers are even lower among 20–29 year olds, where only 10% are treated at institutions that are members of either adult or pediatric cooperative groups, and only 1% participates in cooperative group trials [5]. Poor enrollment on clinical trials is even more noticeable among AYA patients with a rare pediatric tumor histology, such as carcinoma or melanoma [6,7]. The factors that determine if an AYA patient with a rare tumor is treated at a pediatric or adult facility have never been adequately C
described in an objective manner. Because of the paucity of information available on the lack of improvement in survival, the focus of these analyses is on the diagnosis of rare tumors within this younger AYA population. The objectives of this study were to (1) identify the patient characteristics present at diagnosis that influence whether 15–21-year old patients with rare pediatric tumors receive treatment at an adult or pediatric center; (2) determine the effect of the treatment center (adult vs. pediatric) on therapy received for 15–21-year old patients with rare pediatric tumors; and (3) determine the effect of the treatment center (adult vs. pediatric) on survival for 15–21-year old patients with rare pediatric tumors.
METHODS This is a retrospective cohort study performed with data collected from the Georgia Cancer Registry (GCR). The GCR is a statewide population-based cancer registry charged with collecting all cancer cases diagnosed among Georgia residents since January 1, 1995. The registry participates in both the Center for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) and the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program and has a reported incidence capture rate of 98% [8]. 1 Department of Pediatrics, Children’s Healthcare of Atlanta, Emory University, Atlanta, Georgia; 2Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia
Grant sponsor: National Institutes of Health; Grant number: UL1TR000454 Conflict of interest : None of the authors of this manuscript have any conflicts of interest to report.
Corresponding to: Thomas Cash, Health Sciences Research Building, Brumley Bridge, 3rd Floor, W-350, 1760 Haygood Drive, Atlanta, GA 30322. E-mail: [email protected] Received 28 April 2014; Accepted 14 September 2014
2014 Wiley Periodicals, Inc. DOI 10.1002/pbc.25326 Published online 12 November 2014 in Wiley Online Library (wileyonlinelibrary.com).
Rare Pediatric Cancer Survival Comparison Patients included in the study were between 15–21 years of age when diagnosed with a malignant, rare pediatric tumor during the period from 2000–2009. Because 15–21-year old patients would be eligible for treatment at either an adult or pediatric facility, we chose to limit our study to only this subset of the AYA population. For our analysis we further divided patients into a young (15–18 years) and old (19–21 years) age group. Defining rare tumors in pediatrics is difficult considering that pediatric cancer itself is rare with only 12,400 new cases diagnosed yearly in the US in patients under the age of 20 [9]. We defined rare pediatric tumors as those malignancies classified as ‘Other Malignant Epithelial Neoplasms and Melanomas’ in the International Classification of Childhood Cancer (ICCC) Subgroup XI [10]. The data collected from the GCR included sex, race, ethnicity, age at diagnosis, tumor histology, grade, stage, primary site, diagnosis year, type of treatment (radiation, surgery, chemotherapy, combined, or none), treatment center (adult vs. pediatric), distance to the closest pediatric center, poverty status, date of last contact, and survival status. Patients were divided into four diagnosis groups including melanoma, thyroid carcinoma, nasopharyngeal carcinoma, and other carcinomas. The ‘other carcinomas’ group was comprised of 46 different subtypes and included carcinomas of the colon (N ¼ 16), lung (N ¼ 14), cervix (N ¼ 14), breast (N ¼ 12), parotid gland (N ¼ 10), ovary (N ¼ 8), and kidney (N ¼ 6). The primary site data collected from the GCR was collapsed into the organ system-based primary site locations of head and neck, gastrointestinal (GI), lung, skin, genitourinary (GU), thyroid, and other. Patients diagnosed or ever treated at one of the five pediatric centers in Georgia were designated by the GCR as being treated at a pediatric center while all others were designated as being treated at an adult center. Socioeconomic status was assessed by obtaining information about economic poverty. Patients in the GCR are geocoded to the census tract level based on their address at the time of diagnosis. Each patient is then linked by their census tract to 2000. US census data to determine the percentage of individuals in the tract living below the federal poverty line. Patients are next grouped into one of four categories: those living in a census tract where: (1)
Comparison of Survival at Adult Versus Pediatric Treatment Centers for Rare Pediatric Tumors in an Adolescent and Young Adult (AYA) Population in the State of Georgia Thomas Cash, MD, MSc,1* Muna Qayed, MD, MSc,1 Kevin C. Ward, PhD,2 Ann C. Mertens, PhD,1 and Louis Rapkin, MD1 Background. The type of treatment center where 15–21-year-old adolescent and young adult (AYA) patients with rare pediatric tumors achieve their best clinical outcome is unknown. Procedure. We performed a retrospective analysis using the Georgia Cancer Registry (GCR) of 15–21-year old patients with a malignant, rare pediatric tumor diagnosed during the period from 2000–2009. Patients were identified as being treated at one of five Georgia pediatric cancer centers or at an adult center. Data were analyzed for 10 year overall survival, patient characteristics associated with death, and patient characteristics present at diagnosis associated with choice of treatment center. Results. There was a total of 479 patients in our final study population, of which 379 (79.1%) were treated at an adult center and 100 (20.9%) were treated at a pediatric center. Patients
treated at an adult center had a 10 year overall survival of 86% compared to 85% for patients treated at a pediatric center (P ¼ 0.31). Race and poverty were not significantly associated with death. Patients with nasopharyngeal carcinoma (OR ¼ 7.38; 95% CI ¼ 2.30–23.75) and ‘other carcinomas’ (OR ¼ 2.64; 95% CI ¼ 1.25– 5.60) were more likely to be treated at a pediatric center. Patients with higher-stage disease (OR ¼ 4.24; 95% CI ¼ 1.71–10.52) and higher poverty (OR ¼ 2.32; 95% CI ¼ 1.23–4.37) were also more likely to be treated at a pediatric center. Conclusion. Our data suggest that there is no difference in survival for 15–21-year old patients with rare pediatric tumors when treated at an adult or pediatric center. Pediatr Blood Cancer 2015;62:456–462. # 2014 Wiley Periodicals, Inc.
Key words: adolescent and young adult oncology; carcinoma; cancer outcomes; melanoma; rare pediatric tumors; survival comparison
INTRODUCTION Over the last three decades adolescent and young adult (AYA) patients with cancer have not experienced the same improvement in survival as that seen in younger or older patients. During the same time period the incidence of cancer increased more rapidly for AYA patients than any other age group [1]. Part of the challenge in treating AYA patients is deciding where they should be treated for their malignancy. This is difficult for the entire 15–29-year old AYA population, but becomes even more challenging for the subset of AYA patients that are 15–21 years of age, because they could be treated at either a pediatric or adult center. The discrepancy in survival, often referred to as the AYA Gap, has also occurred in part due to the lack of recognition that this population requires focused attention to the unique biology of its malignancies and to its psychosocial and supportive care needs [2,3]. Due to the lack of survival improvement for this population of patients, it is critical to better understand where they can achieve their optimal clinical outcomes in order to maximize treatment strategies. In pediatric oncology, much of the improvement in survival has come as a result of patients being treated on cooperative group clinical trials. Furthermore, it has been observed that the single factor most highly correlated with the AYA gap is lack of participation in clinical trials [4]. Historically, more than 90% of patients younger than 15 years are treated at institutions that participate in NCI-sponsored clinical trials with 70–80% of patients being treated on an open study [4]. In contrast, only 20% of patients who are 15–19 years of age are treated at such institutions, and only 10% of patients in this age group participate in clinical trials [5]. The numbers are even lower among 20–29 year olds, where only 10% are treated at institutions that are members of either adult or pediatric cooperative groups, and only 1% participates in cooperative group trials [5]. Poor enrollment on clinical trials is even more noticeable among AYA patients with a rare pediatric tumor histology, such as carcinoma or melanoma [6,7]. The factors that determine if an AYA patient with a rare tumor is treated at a pediatric or adult facility have never been adequately C
described in an objective manner. Because of the paucity of information available on the lack of improvement in survival, the focus of these analyses is on the diagnosis of rare tumors within this younger AYA population. The objectives of this study were to (1) identify the patient characteristics present at diagnosis that influence whether 15–21-year old patients with rare pediatric tumors receive treatment at an adult or pediatric center; (2) determine the effect of the treatment center (adult vs. pediatric) on therapy received for 15–21-year old patients with rare pediatric tumors; and (3) determine the effect of the treatment center (adult vs. pediatric) on survival for 15–21-year old patients with rare pediatric tumors.
METHODS This is a retrospective cohort study performed with data collected from the Georgia Cancer Registry (GCR). The GCR is a statewide population-based cancer registry charged with collecting all cancer cases diagnosed among Georgia residents since January 1, 1995. The registry participates in both the Center for Disease Control and Prevention’s National Program of Cancer Registries (NPCR) and the National Cancer Institute’s Surveillance, Epidemiology and End Results (SEER) Program and has a reported incidence capture rate of 98% [8]. 1 Department of Pediatrics, Children’s Healthcare of Atlanta, Emory University, Atlanta, Georgia; 2Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia
Grant sponsor: National Institutes of Health; Grant number: UL1TR000454 Conflict of interest : None of the authors of this manuscript have any conflicts of interest to report.
Corresponding to: Thomas Cash, Health Sciences Research Building, Brumley Bridge, 3rd Floor, W-350, 1760 Haygood Drive, Atlanta, GA 30322. E-mail: [email protected] Received 28 April 2014; Accepted 14 September 2014
2014 Wiley Periodicals, Inc. DOI 10.1002/pbc.25326 Published online 12 November 2014 in Wiley Online Library (wileyonlinelibrary.com).
Rare Pediatric Cancer Survival Comparison Patients included in the study were between 15–21 years of age when diagnosed with a malignant, rare pediatric tumor during the period from 2000–2009. Because 15–21-year old patients would be eligible for treatment at either an adult or pediatric facility, we chose to limit our study to only this subset of the AYA population. For our analysis we further divided patients into a young (15–18 years) and old (19–21 years) age group. Defining rare tumors in pediatrics is difficult considering that pediatric cancer itself is rare with only 12,400 new cases diagnosed yearly in the US in patients under the age of 20 [9]. We defined rare pediatric tumors as those malignancies classified as ‘Other Malignant Epithelial Neoplasms and Melanomas’ in the International Classification of Childhood Cancer (ICCC) Subgroup XI [10]. The data collected from the GCR included sex, race, ethnicity, age at diagnosis, tumor histology, grade, stage, primary site, diagnosis year, type of treatment (radiation, surgery, chemotherapy, combined, or none), treatment center (adult vs. pediatric), distance to the closest pediatric center, poverty status, date of last contact, and survival status. Patients were divided into four diagnosis groups including melanoma, thyroid carcinoma, nasopharyngeal carcinoma, and other carcinomas. The ‘other carcinomas’ group was comprised of 46 different subtypes and included carcinomas of the colon (N ¼ 16), lung (N ¼ 14), cervix (N ¼ 14), breast (N ¼ 12), parotid gland (N ¼ 10), ovary (N ¼ 8), and kidney (N ¼ 6). The primary site data collected from the GCR was collapsed into the organ system-based primary site locations of head and neck, gastrointestinal (GI), lung, skin, genitourinary (GU), thyroid, and other. Patients diagnosed or ever treated at one of the five pediatric centers in Georgia were designated by the GCR as being treated at a pediatric center while all others were designated as being treated at an adult center. Socioeconomic status was assessed by obtaining information about economic poverty. Patients in the GCR are geocoded to the census tract level based on their address at the time of diagnosis. Each patient is then linked by their census tract to 2000. US census data to determine the percentage of individuals in the tract living below the federal poverty line. Patients are next grouped into one of four categories: those living in a census tract where: (1)
