Disparities in pediatric cancer survivorship care: A systematic review

BACKGROUND Childhood cancer survivors (CCS) experience many long-term health problems that can be mitigated with recommended survivorship care. However, many CCS do not have access to survivorship care nor receive recommended survivorship care. We reviewed the empirical evidence of disparities in survivorship care for CCS. METHODS This systematic review searched PubMed, CINAHL, and PsycINFO for studies on survivorship care for CCS (PROSPERO: CRD42021227965) and abstracted the reported presence or absence of disparities in care. We screened 7945 citations, and of those, we reviewed 2760 publications at full text. RESULTS A total of 22 studies reported in 61 publications met inclusion criteria. Potential disparities by cancer treatment (N = 14), diagnosis (N = 13), sex (N = 13), and current age (N = 13) were frequently studied. There was high quality of evidence (QOE) of survivorship care disparities associated with non-White race, Hispanic ethnicity, and being uninsured. Moderate QOE demonstrated disparities among CCS who were unemployed and older. Lower QOE was found for disparities based on cancer diagnosis, cancer treatment, age at diagnosis, time since diagnosis, sex, insurance type, income, educational attainment, and geographic area. CONCLUSIONS We found strong empirical evidence of disparities in survivorship care for CCS associated with race, ethnicity, and insurance status. Multiple other disparate groups, such as those by employment, income, insurance type, education, cancer diagnosis, age at diagnosis, time since diagnosis, cancer treatment, geographic area, sex, and self-identified gender warrant further investigation. Prospective, multilevel research is needed to examine the role of other patient characteristics as potential disparities hindering adequate survivorship care in CCS.

[1]  J. Milam,et al.  The Impact of Hispanic Ethnicity and Language on Communication Among Young Adult Childhood Cancer Survivors, Parents, and Medical Providers and Cancer-Related Follow-Up Care , 2022, JCO oncology practice.

[2]  N. Sicignano,et al.  Late Effects Screening of Acute Lymphoblastic Leukemia Survivors in the Military Healthcare System. , 2022, Military Medicine.

[3]  G. Armstrong,et al.  Impact of COVID‐19 pandemic on a large cohort of adult survivors of childhood cancer , 2021, Pediatric blood & cancer.

[4]  M. Cousineau,et al.  Insurance Coverage Change and Survivorship Care among Young Adult Survivors of Childhood Cancer. , 2021, Health services research.

[5]  M. Cousineau,et al.  Project Forward: A Population-Based Cohort Among Young Adult Survivors of Childhood Cancers , 2021, JNCI cancer spectrum.

[6]  M. Cousineau,et al.  Barriers to Physician-Based Skin Examinations for Adolescent and Young Adult Survivors of Melanoma in the Project Forward Study. , 2021, JAMA dermatology.

[7]  K. Ness,et al.  Forgoing needed medical care among long-term survivors of childhood cancer: racial/ethnic-insurance disparities , 2021, Journal of Cancer Survivorship.

[8]  J. Milam,et al.  Parental Cancer-related Information Seeking, Health Communication and Satisfaction with Medical Providers of Childhood Cancer Survivors: Differences by Race/Ethnicity and Language Preference , 2021, Journal of health communication.

[9]  Carmen L. Wilson,et al.  Cohort Profile: The St. Jude Lifetime Cohort Study (SJLIFE) for paediatric cancer survivors. , 2020, International journal of epidemiology.

[10]  M. Ienca,et al.  The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer , 2020, BMC Health Services Research.

[11]  J. Unger,et al.  Relationships between parent and adolescent/young adult mental health among Hispanic and non-Hispanic childhood cancer survivors , 2020, Journal of psychosocial oncology.

[12]  G. Armstrong,et al.  Longitudinal pain and pain interference in long‐term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study , 2020, Cancer.

[13]  J. Fish,et al.  Cost of survivorship care and adherence to screening-aligning the priorities of health care systems and survivors. , 2020, Translational behavioral medicine.

[14]  A. Marghoob,et al.  Skin Cancer Early Detection Practices among Adult Survivors of Childhood Cancer Treated with Radiation. , 2019, The Journal of investigative dermatology.

[15]  C. Ronckers,et al.  The involvement of primary care physicians in care for childhood cancer survivors , 2019, Pediatric blood & cancer.

[16]  A. Mertens,et al.  Survivor clinic attendance among pediatric- and adolescent-aged survivors of childhood cancer , 2018, Journal of Cancer Survivorship.

[17]  M. Cousineau,et al.  Insurance Coverage, and Having a Regular Provider, and Utilization of Cancer Follow-up and Noncancer Health Care Among Childhood Cancer Survivors , 2019, Inquiry : a journal of medical care organization, provision and financing.

[18]  J. Milam,et al.  Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors , 2018, Supportive Care in Cancer.

[19]  L. Diller,et al.  Understanding predictors of continued long‐term pediatric cancer care across the region: A report from the Consortium for New England Childhood Cancer Survivors , 2017, Pediatric blood & cancer.

[20]  Mark L. Greenberg,et al.  Specialized survivor clinic attendance increases adherence to cardiomyopathy screening guidelines in adult survivors of childhood cancer , 2017, Journal of Cancer Survivorship.

[21]  Ken R. Smith,et al.  Effect of Population Socioeconomic and Health System Factors on Medical Care of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study. , 2017, Journal of adolescent and young adult oncology.

[22]  J. Fish,et al.  Looking for trouble: Adherence to late‐effects surveillance among childhood cancer survivors , 2017, Pediatric blood & cancer.

[23]  M. Schapira,et al.  Associates of Engagement in Adult-Oriented Follow-Up Care for Childhood Cancer Survivors. , 2017, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[24]  A. Mertens,et al.  Young Adult Cancer Survivors’ Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care , 2015, Journal of Cancer Education.

[25]  N. Kadan-Lottick,et al.  Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors , 2016, Journal of Cancer Survivorship.

[26]  Yimei Li,et al.  Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care , 2016, Journal of Cancer Survivorship.

[27]  Mark L. Greenberg,et al.  Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer , 2016, Journal of Cancer Survivorship.

[28]  F. Gumy-Pause,et al.  Follow‐up care of adolescent survivors of childhood cancer: The role of health beliefs , 2016, Pediatric blood & cancer.

[29]  Mark L. Greenberg,et al.  Specialized survivor clinic attendance is associated with decreased rates of emergency department visits in adult survivors of childhood cancer , 2015, Cancer.

[30]  Mark L. Greenberg,et al.  Identifying Predictors of Longitudinal Decline in the Level of Medical Care Received by Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study. , 2015, Health services research.

[31]  J. Milam,et al.  Cancer‐related follow‐up care among Hispanic and non‐Hispanic childhood cancer survivors: The Project Forward study , 2015, Cancer.

[32]  Molly H. Gardner,et al.  Barriers to the Use of Psychosocial Support Services Among Adolescent and Young Adult Survivors of Pediatric Cancer. , 2014, Journal of adolescent and young adult oncology.

[33]  C. Kuehni,et al.  Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study , 2014, Supportive Care in Cancer.

[34]  M. Hudson,et al.  Survivors of childhood and adolescent cancer: life-long risks and responsibilities , 2013, Nature Reviews Cancer.

[35]  J. Stinson,et al.  Judging the quality of evidence in reviews of prognostic factor research: adapting the GRADE framework , 2013, Systematic Reviews.

[36]  A. Glaser,et al.  The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer , 2013, Psycho-oncology.

[37]  G. Armstrong,et al.  Clinical ascertainment of health outcomes among adults treated for childhood cancer. , 2013, JAMA.

[38]  C. Bombardier,et al.  Assessing Bias in Studies of Prognostic Factors , 2013, Annals of Internal Medicine.

[39]  A. Kazak,et al.  A revision of the intensity of treatment rating scale: Classifying the intensity of pediatric cancer treatment , 2012, Pediatric blood & cancer.

[40]  G. Armstrong,et al.  Hospitalization rates among survivors of childhood cancer in the childhood cancer survivor study cohort , 2012, Pediatric blood & cancer.

[41]  L. Schwartz,et al.  Factors that contribute to post-treatment follow-up care for survivors of childhood cancer , 2012, Journal of Cancer Survivorship.

[42]  S. Sheps,et al.  Patterns of physician follow-up among young cancer survivors: report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program. , 2011, Canadian family physician Medecin de famille canadien.

[43]  C. Eiser,et al.  Can health beliefs help in explaining attendance to follow‐up care? The Swiss Childhood Cancer Survivor Study , 2011, Psycho-oncology.

[44]  S. Bhatia Disparities in cancer outcomes: Lessons learned from children with cancer , 2011, Pediatric blood & cancer.

[45]  M. Hudson,et al.  Impact of insurance type on survivor‐focused and general preventive health care utilization in adult survivors of childhood cancer , 2011, Cancer.

[46]  C. Recklitis,et al.  Suicide ideation in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[47]  M. Hudson,et al.  Impact of radiation and chemotherapy on risk of dental abnormalities , 2009, Cancer.

[48]  M. Hudson,et al.  Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer , 2008, Journal of cancer survivorship : research and practice.

[49]  S. Rai,et al.  Marriage, employment, and health insurance in adult survivors of childhood cancer , 2007, Journal of cancer survivorship : research and practice.

[50]  M. Hudson,et al.  Minority adult survivors of childhood cancer: a comparison of long-term outcomes, health care utilization, and health-related behaviors from the childhood cancer survivor study. , 2005, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[51]  A. Glaser,et al.  Hospital attendance patterns in long term survivors of cancer , 2004, Archives of Disease in Childhood.

[52]  M. Hudson,et al.  An examination of the dental utilization practices of adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. , 2004, Journal of public health dentistry.

[53]  Kevin C Oeffinger,et al.  Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study , 2004, The Annals of Family Medicine.

[54]  P. Hinds,et al.  Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study. , 2002, Medical and pediatric oncology.

[55]  D. Schwartz,et al.  Predictors of Suboptimal Follow-up in Pediatric Cancer Survivors , 2017, Journal of pediatric hematology/oncology.