Supporting Adolescents and Young Adults With Cancer Through Transitions: Position Statement From the Canadian Task Force on Adolescents and Young Adults With Cancer
transition
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. METHODS:: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed case-controlled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. RESULTS:: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). CONCLUSIONS:: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society.
2014-01
Wilkins KL; D'Agostino NM; Penney AM; Barr RD; Nathan PC
Journal Of Pediatric Hematology/oncology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/MPH.0000000000000103" target="_blank" rel="noreferrer">10.1097/MPH.0000000000000103</a>
Translation and cultural adaptation of Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) with application to survivors of childhood cancer in Brazil
PedPal Lit; Sickness Impact Profile Survivors/psychology Translating; Adult Brazil ChildCulture Female Humans Male Neoplasms/ethnology/physiopathology/therapy Psychometrics/instrumentationQuality of Life Quality-Adjusted Life YearsQuestionnaires Research Support; and review of the back-translat ions by original developers of the HUI. The final questionnaires were tested by surveying a sample of convenience of 50 patients recruited at the Centro de Tratamento e Pesquisa-Hospital do Cancer in Sao Paulo; back-translation by two independent translators of the forward translation; Brazil. RESULTS: Fifty patients were enrolled in the study. No assessor; consensus between translators on a forward translation; patient or nurse or physician; preference-based systems for describing health status and HRQL. Developed in Canada; understandabl(TRUNCATED)
2005
Shimoda S; De Camargo B; Horsman J; Furlong W; Lopes LF; Seber A; Barr RD
Quality of Life Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s11136-004-6127-3" target="_blank" rel="noreferrer">10.1007/s11136-004-6127-3</a>
Use of paediatric versus adult oncology treatment centres by adolescents 15-19 years old: the Canadian Childhood Cancer Surveillance and Control Program
Disease; PedPal Lit; Adolescent Cancer Care Facilities/utilization Child Child Health Services/utilization Comparative Study Delivery of Health Care Humans Neoplasms/epidemiology/therapy Ontario/epidemiology Research Support; and can be improved.; the demographic
2005
Klein-Geltink J; Shaw AK; Morrison HI; Barr RD; Greenberg ML
European Journal Of Cancer
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ejca.2004.10.023" target="_blank" rel="noreferrer">10.1016/j.ejca.2004.10.023</a>
Adolescents and young adults with cancer: An orphaned population
Adult; Neoplasms; Adolescents; Adult Children
Adolescents and young adults (AYAs [15 to 29 years of age]) with cancer have a distinct cancer epidemiology, evolving hormonal milieu, maturing development, transitions in autonomy, increasing demands in education, entry into the workplace and family responsibilities. The prevalence of epithelial cancers in AYA patients represents a major shift from the embryonal cancers that predominate in early childhood. Thus, one would expect a specialized expertise to be required in caring for these patients, who typically fall between paediatric and oncology spheres of practice. Complex issues contribute to the lower survival rates noted for AYAs compared with those of younger patients, even with the same cancer. Cooperative group clinical trial participation has been crucial in advancing the excellent outcomes accomplished in paediatric oncology, yet participation by adolescents in clinical trials (either adult or paediatric) is typically low. There is increasing evidence that both appropriate location of care and access to specialists in paediatric or adult oncology contribute to favourable outcomes. Issues specific to AYA patients should be studied rigorously so that evidence-based approaches may be used to reduce waiting times, ensure prompt referral to appropriate centres, increase accrual to clinical trials, foster compliance, provide comprehensive supportive care and promote programs designed to enhance survivorship.
2006
Fernandez CV; Barr RD
Paediatrics & Child Health
2006
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Journal Article
<a href="http://doi.org/10.1093/pch/11.2.103" target="_blank" rel="noreferrer">10.1093/pch/11.2.103</a>
Children, cancer, and nutrition--A dynamic triangle in review
Child; Humans; infant; Prognosis; Nutritional Support; Health Status; Survival Analysis; Incidence; Preschool; Non-U.S. Gov't; Research Support; infant; Nutritional Status; Newborn; Nutritional Failure; Child welfare; Developing Countries; Malnutrition/epidemiology/physiopathology; Neoplasms/complications/therapy; Nutrition Assessment
The overall cure rate for cancer in childhood now exceeds 70% and is projected to reach 85% by the year 2010 in industrialized countries. Therefore, major attention is being placed on reducing the side effects of therapy. However, 85% of the world's children live in developing countries, where access to adequate care often is limited and health status frequently is influenced adversely by prevalent infectious diseases and malnutrition. Despite several confounding factors (different definitions of nutritional status, the wide variety of measures used for its assessment, the selection biases by disease and stage, treatment protocols of variable dose intensity and efficacy, small sample sizes of the studies conducted in the last 20 years), it is accepted that the prevalence of malnutrition at diagnosis averages 50% in children with cancer in developing countries; whereas, in industrialized countries, it is related to the type of tumor and the extent of the disease, ranging from < 10% in patients with standard-risk acute lymphoblastic leukemia to 50% in patients with advanced neuroblastoma. The importance of nutritional status in children with cancer is related to its possible influence on the course of the disease and survival. Some authors have described decreased tolerance of chemotherapy associated with altered metabolism of antineoplastic drugs, increased infection rates, and poor clinical outcome in malnourished children. In this article, the authors review methods of nutritional assessment and the pathogenesis of nutritional morbidity in children with cancer as well as correlations of nutritional status with diagnosis, treatment, and outcome.
2004
Sala A; Pencharz P; Barr RD
Cancer
2004
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Journal Article
<a href="http://doi.org/10.1002/cncr.11833" target="_blank" rel="noreferrer">10.1002/cncr.11833</a>
Osteopenia in children with acute lymphoblastic leukemia: a pilot study of amelioration with Pamidronate
Child; Female; Humans; Male; Pilot Projects; Leukemia; Drug Administration Schedule; Bone Diseases; adolescent; Preschool; P.H.S.; Research Support; U.S. Gov't; Clodronate; Acute; Anti-Inflammatory Agents/administration & dosage/therapeutic use; Antineoplastic Agents/administration & dosage/therapeutic use; Antineoplastic Combined Chemotherapy Protocols/therapeutic use; Asparaginase/therapeutic use; Dexamethasone/therapeutic use; Diphosphonates/administration & dosage/therapeutic use; Doxorubicin/therapeutic use; L1/complications/drug therapy; Lymphocytic; Metabolic/drug therapy/etiology
2002
Barr RD; Guo CY; Wiernikowski J; Webber C; Wright M; Atkinson S
Medical & Pediatric Oncology
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/mpo.10057" target="_blank" rel="noreferrer">10.1002/mpo.10057</a>