Practice Recommendations: Managing the Educational Needs of Pediatric Hematology & Oncology Patients

By Association of Pediatric Hematology Oncology Educational Specialists

Children diagnosed with cancer or chronic blood disorders experience significant interruptions in their school
routines. The Association of Pediatric Hematology Oncology Educational Specialists (APHOES) has developed this comprehensive resource to provide professionals with a framework for developing school intervention programs to meet the needs of students with cancer or chronic blood disorders.

• Language: English
• Publisher: BookBaby
• Release date: Aug 1, 2014
• ISBN: 9781483534299

Book preview

ISBN: 978-1-4835342-9-9

Table of Contents

Preface

Key Practice Recommendations

Acknowledgments

Chapter 1  Mapping the Course: Introduction to School Intervention Programs

Chapter 2  Getting Started: Making the Initial Contact with Patients, Families, and Schools

Chapter 3  Staying on Track: Monitoring Academic Progress and Performance

Chapter 4  Ready, Set, Go…School Re-Entry: Faculty and Classroom Presentations

Chapter 5  Moving Forward…Childhood Cancer Survivorship: Educational Issues and Cognitive Late Effects

Chapter 6  Obstacles and Hurdles: An Intervention Program Assisting Students with Blood Disorders

Chapter 7  Time: Support During Palliative and Bereavement Care

Chapter 8  Back of the Pack: Supporting Siblings in School

Appendices

A.  Sample Consent to Contact School

B.  Sample Intake Form

C.  Books for Children, Parents and Teachers

D.  Questions that May Arise During a Classroom Visit for a Child Who has Died, with Suggested Responses

E.  Cancer Resources

F.   Blood Disorders Resources

G.  Scholarships.

H.  Glossary of School-Related Terms

I.   Annotated Bibliography of School Issues for Students with Cancer

J.   Annotated Bibliography of School Issues for Students with Blood Disorders

K.  Sample School-Related Letters and Forms

L.  Annotated Bibliography-School Issues for Siblings

Preface

Children diagnosed with cancer or chronic blood disorders experience significant interruptions in school routines. Assistance should be provided to minimize the impact of illness and medical treatment on education. Assistance should also be provided to ease students’ transition back to the classroom when their health allows. Hospital-based school intervention programs and identified liaisons from the medical setting should work with school personnel to provide educational assessments, planning and interventions.

The Association of Pediatric Hematology Oncology Educational Specialists (APHOES) strives to bridge the gap between hospital and school through partnership, advocacy and communication. APHOES has developed practice recommendations to provide professionals and other organizations with a framework for developing school intervention programs to meet the needs of students with cancer or chronic hematologic disorders. The intent is to increase the availability of such services for patients receiving medical care throughout the United States and to encourage future efforts in the field to develop evidence-based standards of care.

Developing these practice recommendations was particularly challenging. There are few empirical studies of the educational difficulties experienced by pediatric hematology-oncology patients and of interventions targeting these challenges. Additionally, there are few published recommendations or guidelines for school intervention programs and professionals addressing the educational needs of children diagnosed with cancer or hematologic disorders. Therefore, the APHOES practice recommendations reflect primarily the consensus-based clinical experiences and expert opinions of the APHOES membership.

Some of the empirical work informing the development of the APHOES Practice Recommendations is cited below:

Barrera, M., Shaw, A. K., Speechley, K. N., Maunsell, E., & Pogany, L. (2005). Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer, 104(8), 1751-1760. doi: 10.1002/cncr.21390

Daly, B. P., Kral, M. C., & Brown, R. T. (2008). Cognitive and academic problems associated with childhood cancers and sickle cell disease. School Psychology Quarterly, 23(2), 230-242. doi: 10.1037/1045-3830.23.2.230

Gerhardt, C. A., Dixon, M., Miller, K., Vannatta, K., Valerius, K. S., Correll, J., & Noll, R. B. (2007). Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental & Behavioral Pediatrics, 28(6), 448-455. doi: 10.1097/DBP.0b013e31811ff8e1

Koontz, K., Short, A. D., Kalinyak, K., & Noll, R. B. (2004). A randomized, controlled pilot trial of a school intervention for children with sickle cell anemia. Journal of Pediatric Psychology, 29(1), 7-17. doi: 10.1093/jpepsy/jsh002

Mitby, P. A., Robison, L. L., Whitton, J. A., Zevon, M. A., Gibbs, I. C., Tersak, J. M.,…Mertens, A. C. (2003). Utilization of special education services and educational attainment among long-term survivors of childhood cancer. Cancer, 97(4), 1115-1126. doi: 10.1002/cncr.11117

Rey-Casserly, C., & Meadows, M. E. (2008). Developmental perspectives on optimizing educational and vocational outcomes in child and adult survivors of cancer. Developmental Disabilities Research Reviews, 14(3), 243-250. doi: 10.1002/ddrr.31

Schatz, J. (2004). Brief report: Academic attainment in children with sickle cell disease. Journal of Pediatric Psychology, 29(8), 627-633. doi: 10.1093/jpepsy/jsh065

Schatz, J., Brown, R. T., Pascual, J. M., Hsu, L., & DeBaun, M. R. (2001). Poor school and cognitive functioning with silent infarcts and sickle cell disease. Neurology, 56, 1109-1111.

The existing related practice guidelines reviewed during the development of the APHOES Practice Recommendations include:

Children’s Oncology Group. (2008, October). Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers (Version 3). Retrieved from http://www.survivorshipguidelines.org/pdf/LTFUGuidelines.pdf

International Society of Paediatric Oncology. (2002, September). Childhood cancer-Guidelines for standards of treatment and care. Retrieved from http://www.siop.nl/about-siop/committees/ad-hoc-committees/standards-of-care-and-training-2002-document

Landier, W. (ed.) (2007). Establishing and enhancing services for childhood cancer survivors: Long-term follow-up program resource guide. Retrieved from http://www.childrensoncologygroup.org/index.php/research-257/survivorship-guidelines

Nathan, P. C., Patel, S. K., Dilley, K., Goldsby, R., Harvey, J., Jacobsen, C.,…Armstrong, F. D. (2007). Guidelines for identification of, advocacy for, and intervention in neurocognitive problems in survivors of childhood cancer: A report from the Children’s Oncology Group. Archives of Pediatrics and Adolescent Medicine, 161(8), 798-806. doi: 10.1001/archpedi.161.8.798

National Collaborating Centre for Cancer. (2005, August). Improving outcomes in children and young people with cancer. Retrieved from http://www.nice.org.uk/guidance/csgcyp

Scottish Intercollegiate Guidelines Network. (2013). Long term follow up of survivors of childhood cancer: A national clinical guideline. Retrieved from http://www.sign.ac.uk/guidelines/fulltext/132/index.html

The following elements guided the development of the APHOES Practice Recommendations:

Health Questions

1.    Do children with certain types of cancer or chronic blood disorders have a risk of developing educational difficulties?

2.    What factors increase the risk of educational problems in children diagnosed with cancer or chronic hematologic disorders?

3.    How can school intervention programs address the educational needs of children diagnosed with cancer or chronic blood disorders?

4.    What type of learning problems or cognitive effects can develop in children diagnosed with cancer or chronic blood disorders?

5.    What types of assessments, monitoring and interventions are recommended?

6.    How can school intervention programs assist families and school personnel during palliative and bereavement care?

Target Population

School-aged children with chronic blood disorders or cancer.

Target Users

All professionals working with families, students, the medical team, and school personnel in managing the educational needs of children diagnosed with chronic blood disorders or cancer.

Funding Sources

The individuals involved in the development of the APHOES Practice Recommendations have no conflict of interest with respect to the development of this document. The APHOES Practice Recommendations were developed independently from any funding body.

Overview of Material

APHOES Practice Recommendations release dates: May, 2011. Version 1.0; September 2013. Version 2.0; and April 2015. Version 3.0

APHOES would like to express its appreciation and gratitude to Paula Robinson, M.D., MSc and the C17 Standards and Guidelines Committee’s School Re-entry Working Group for reviewing the APHOES Practice Recommendations and providing valuable feedback and suggestions.

Electronic Source

APHOES Practice Recommendations are available at www.aphoes.org.

Review and Updating

The APHOES Practice Recommendations for Managing the Educational Needs of Pediatric Hematology and Oncology Patients, Version 1.0 was issued in 2011 and updated to Version 2.0 in 2013. Version 3.0, formatted for electronic readers and digital distribution, is released in 2015. The APHOES Editorial Committee will review the Recommendations on a regular basis to determine need for updates. Updates will be noted on the APHOES website (www.aphoes.org). We suggest that professionals check this website regularly for the latest revisions and updates.

Copyright

The APHOES Practice Recommendations for Managing the Educational Needs of Pediatric Hematology and Oncology Patients is copyrighted by APHOES and may not be reproduced without the express written permission of APHOES. APHOES reserves the right at any time, and at its sole discretion, to change or revoke this authorization.

Disclaimer

Professionals who are not regularly involved in the care of children with cancer or hematologic disorders are encouraged to consult with a pediatric hematologist/oncologist and a liaison to schools from the medical team if concerns or questions arise when reviewing or implementing the APHOES practice recommendations. The APHOES recommendations are not intended to replace clinical judgment or medical assessment. APHOES disclaims any responsibility for the application or use of these practice recommendations.

Key APHOES Practice Recommendations:

1.    The need for school support begins at diagnosis. As soon as possible, a single professional based in the hospital should be designated as the school liaison for each child diagnosed with cancer or a chronic hematologic disorder.

2.    Soon after diagnosis, the liaison working with the child, family and school staff should create an academic plan.

3.    Clear, on-going communication between the liaison, child, parents, and teachers is essential. In particular, a meeting should be considered upon the child’s return to school, at the beginning of an academic year, and/or when the child transitions to a new school.

4.    School attendance is encouraged as soon as it is medically safe and appropriate. Factors such as infection risk due to neutropenia, safety of external central lines, and mobility should be balanced against the improvements in quality of life associated with school participation.

5.    Factors to be considered when assessing a child’s ability to attend school relate to the child’s condition and treatment. The student’s psychosocial readiness, pain level, degree of fatigue, strength and, for a student with cancer, the degree of bone marrow suppression should all be assessed. Consideration must be given to treatment type, duration, and frequency.

6.    Children at risk for educational difficulties because of their illness and/or treatment should be identified, assessed, and monitored. Risk factors to consider include: diagnosis, treatment, age, gender, functioning, family history, impairments, chronic illness, barriers to services, prolonged interruption in academic instruction, and/or a difficult transition back to school.

7.    A meeting including the liaison and/or others from the medical team, student, and family should occur prior to the student’s return to school to discuss the family’s concerns, fears, and expectations, and to plan for and facilitate the student’s smooth transition back into the classroom. If a meeting involving all of these parties is not feasible due to distance between the hospital and school or other factors, the liaison and medical team should