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
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/10.1093/pch/11.2.103" target="_blank" rel="noreferrer">10.1093/pch/11.2.103</a>
Development of a quality of life instrument for children with advanced cancer: The pediatric advanced care quality of life scale (PAC-QoL)
quality of life; measure; oncology
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation. Pediatr Blood Cancer 2014; 61:1840-1845. © 2014 Wiley Periodicals, Inc.
2014-10
Cataudella D; Morley TE; Nesin A; Fernandez CV; Johnston DL; Sung L; Zelcer S
Pediatric Blood & Cancer
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/10.1002/pbc.25115" target="_blank" rel="noreferrer">10.1002/pbc.25115</a>