59
through: (I) identifying and tracking survivors, (2) identifying survivors’ needs, (3) offering comprehensive medical care, (4) educating survivors and their families, and (5) defining problems and issues surrounding survival through research. The program is based on several concepts to ensure smooth operation. These include a nurse coordinator, continued patient accrual, the use of a computerized data base, patient education, and medical management of patient problems related to their cancer and its treatment Each patient is treated as an individual so that his or her needs can be specifically addressed. Most questions and problems center around growth and development, reproduction, and second cancers. Much of the intervention required involves dispelling myths, evaluating potential problems, referring patients to specialty areas as needed, and preventative health care education. Because cure is not enough alone, offering a long-term follow-up program to survivors is an essential part of continued care for the child and family diagnosed with cancer. survivors
The Childhood Cancer Survivor Cohort Study: What Can We Learn? Joseph P. Neglia, MD, MPH
and Leslie L.
Robison, PhD
As a result of improved treatment for childhood cancers, an ever-increasing population of long-term survivors is developing. Estimates of the size of this population suggest that in the year 2000 there will be over 200,000 long-term (>5-year) survivors in the United States. The effects of the assimilation of this large cohort of persons into the population at large is unknown, and there currently exist no mechanisms by which this group can be traced once they have severed ties with their treating physician or institution. As a mechanism to facilitate follow-up of this unique population and allow for investigation of late consequences of diagnosis and therapy, the Childhood Cancer Survivor Cohort Study has been developed. As proposed, this is a collaborative study of over 20 institutions across the United States. Approximately 20;000 long-term survivors who meet the entry criteria for the study will be enrolled. These criteria include diagnosis before age 21, 5 years of continuous remission, discontinuation of therapy, and diagnosis after January 1, 1970. Eligible patients who have been lost to follow-up at their institution will be traced to reduce any possible bias associated with this status. Study participants will be contacted on an annual or bi-annual schedule through the mail. Specific aims of the study include: determination of the age-, sex-, and race-specific mortality rates for this population; determination of late-onset cancers or chronic diseases; examination of the fertility and offspring of survivors; surveying the health-related behaviors of this population (ie, diet, exercise, use of tobacco); delineation of the use of the health care system by long-term survivors; and the occurrence of other cancers within these families. Additionally, a sibling cohort of survivors will be constructed to act as controls for treatment-associated end points and overall mortality. This cohort will offer the first opportunity to study late effects of current childhood cancer therapies in a population large enough to allow investigation of agent and diagnosis interactions, and will provide a mechanism for long-term monitoring of these individuals. From Department of Pediatrics, University of Minnesota, Minneapolis, MN. © Pediatric Oncology Nurses.
1991 by Association of
Downloaded from jpo.sagepub.com at UNIV CALIFORNIA SAN DIEGO on June 11, 2015
through: (I) identifying and tracking survivors, (2) identifying survivors’ needs, (3) offering comprehensive medical care, (4) educating survivors and their families, and (5) defining problems and issues surrounding survival through research. The program is based on several concepts to ensure smooth operation. These include a nurse coordinator, continued patient accrual, the use of a computerized data base, patient education, and medical management of patient problems related to their cancer and its treatment Each patient is treated as an individual so that his or her needs can be specifically addressed. Most questions and problems center around growth and development, reproduction, and second cancers. Much of the intervention required involves dispelling myths, evaluating potential problems, referring patients to specialty areas as needed, and preventative health care education. Because cure is not enough alone, offering a long-term follow-up program to survivors is an essential part of continued care for the child and family diagnosed with cancer. survivors
The Childhood Cancer Survivor Cohort Study: What Can We Learn? Joseph P. Neglia, MD, MPH
and Leslie L.
Robison, PhD
As a result of improved treatment for childhood cancers, an ever-increasing population of long-term survivors is developing. Estimates of the size of this population suggest that in the year 2000 there will be over 200,000 long-term (>5-year) survivors in the United States. The effects of the assimilation of this large cohort of persons into the population at large is unknown, and there currently exist no mechanisms by which this group can be traced once they have severed ties with their treating physician or institution. As a mechanism to facilitate follow-up of this unique population and allow for investigation of late consequences of diagnosis and therapy, the Childhood Cancer Survivor Cohort Study has been developed. As proposed, this is a collaborative study of over 20 institutions across the United States. Approximately 20;000 long-term survivors who meet the entry criteria for the study will be enrolled. These criteria include diagnosis before age 21, 5 years of continuous remission, discontinuation of therapy, and diagnosis after January 1, 1970. Eligible patients who have been lost to follow-up at their institution will be traced to reduce any possible bias associated with this status. Study participants will be contacted on an annual or bi-annual schedule through the mail. Specific aims of the study include: determination of the age-, sex-, and race-specific mortality rates for this population; determination of late-onset cancers or chronic diseases; examination of the fertility and offspring of survivors; surveying the health-related behaviors of this population (ie, diet, exercise, use of tobacco); delineation of the use of the health care system by long-term survivors; and the occurrence of other cancers within these families. Additionally, a sibling cohort of survivors will be constructed to act as controls for treatment-associated end points and overall mortality. This cohort will offer the first opportunity to study late effects of current childhood cancer therapies in a population large enough to allow investigation of agent and diagnosis interactions, and will provide a mechanism for long-term monitoring of these individuals. From Department of Pediatrics, University of Minnesota, Minneapolis, MN. © Pediatric Oncology Nurses.
1991 by Association of
Downloaded from jpo.sagepub.com at UNIV CALIFORNIA SAN DIEGO on June 11, 2015
