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Health-Related Quality of Life

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Cancer in Adolescents and Young Adults

Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

The adolescent and young adult (AYA) period is unique; individuals are faced with personal and developmental challenges, which are amplified by having a diagnosis of cancer. Understanding the unique challenges of AYA is critical and may be assessed through the use of clinically meaningful and psychometrically sound scales measuring the impact of cancer on health-related quality of life (HRQL). The purpose of this chapter is to identify patient-reported outcome (PRO) instruments used with AYA with cancer to develop a preliminary conceptual framework of the HRQL content deemed important for AYA. Findings from two previous systematic reviews and a search of Medline, PsycINFO, EMBASE, and CINAHL from January 2008 to December 2014 were conducted by our team to identify self-report cancer-specific PRO instruments for AYA. Twelve instruments developed for cancer patients and survivors were identified. A content analysis of 418 items from these instruments led to the identification of six major domains as follows: psychological, social, physical, general, sexual, and spiritual. Important differences in content were noted between PRO instruments designed for pediatric patients versus young adults. Specifically, pediatric tools lacked items to measure spirituality, goal setting/future plans, and sexual and reproductive health, while instruments designed specifically for AYA tended to measure the breadth of concerns of AYA. Using the most appropriate PRO instrument in clinical research and/or practice is crucial. Therefore, in selecting a PRO instrument to measure the HRQL of AYA, it is important to carefully consider how an instrument was developed and whether its content will appropriately answer the research question or clinical evaluative purpose.

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References

  1. Thomas DM, Albritton KH, Ferrari A (2010) Adolescent and young adult oncology: an emerging field. J Clin Oncol 28:4781–4782

    Article  PubMed  Google Scholar 

  2. Spear LP (2000) The adolescent brain and age-related behavioral manifestations. Neurosci Behav Rev 24:417–463

    Article  CAS  Google Scholar 

  3. Arnett JJ (2000) Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 55:469–480

    Article  CAS  PubMed  Google Scholar 

  4. Zebrack BJ (2011) Psychological, social and behavioral issues for young adults with cancer. Cancer 117:2289–2294

    Article  PubMed  Google Scholar 

  5. WHO (1948) World Health Organization constitution. Geneva.

    Google Scholar 

  6. Moons P, Budts W, De Geest S (2006) Critique on the conceptualisation of quality of life: a review and evaluation of different conceptual approaches. Int J Nurs Stud 43:891–901

    Article  PubMed  Google Scholar 

  7. Post MW, de Witte LP, Schrijvers AJ (1999) Quality of life and the ICIDH: towards an integrated conceptual model for rehabilitation outcomes research. Clin Rehabil 13:5–15

    Article  CAS  PubMed  Google Scholar 

  8. U.S. Food and Drug Administration (2014) Clinical outcome assessment qualification program. FDA. Available from: http://www.fda.gov/Drugs/DevelopmentApprovalProcess/DrugDevelopmentToolsQualificationProgram/ucm284077.htm

  9. Fayed N, De Camargo OK, Kerr E, Rosenbaum P, Dubey A, Bostan C et al (2012) Generic patient‐reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol 54:1085–1095

    Article  PubMed  Google Scholar 

  10. Fayed N, Schiariti V, Bostan C, Cieza A, Klassen A (2011) Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions. Qual Life Res 20:1247–1258

    Article  PubMed  Google Scholar 

  11. Matza LS, Patrick DL, Riley AW, Alexander JJ, Rajmil L, Pleil AM et al (2013) Pediatric patient-reported outcome instruments for research to support medical product labeling: report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value Health 16:461–479

    Article  PubMed  Google Scholar 

  12. Fayer PM, Machin D (2007) Quality of life: the assessment, analysis and interpretation of patient-reported outcomes, 2nd edn. Wiley, Sussex

    Book  Google Scholar 

  13. Brod M, Tesler LE, Christensen TL (2009) Qualitative research and content validity: developing best practices based on science and experience. Qual Life Res 18:1263–1278

    Article  PubMed  Google Scholar 

  14. Anthony SJ, Selkirk E, Sung L, Klaassen R, Dix D, Scheinemann K, Klassen AF (2014) Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model. Qual Life Res 3:771–789

    Article  Google Scholar 

  15. Varni JW, Seid M, Rode CA (1999) The PedsQL™: measurement model for the pediatric quality of life inventory. Med Care 37:126–139

    Article  CAS  PubMed  Google Scholar 

  16. Feeny D, Furlong W, Boyle M, Torrance GW (1995) Multi-attribute health status classification systems. Health Util Index Pharmacoeconomics 7:490–502

    CAS  Google Scholar 

  17. Feeny DH, Torrence G, Furlong W (1996) Health utilities index. In: Quality of life and pharmacoeconomics in clinical trials Lippincott-Raven Publishers, United States, vol 2. pp 239–252

    Google Scholar 

  18. Landgraf JM, Abetz L, Ware JE (2006) The CHQ user’s manual. Quality Metric Incorporated 3, Lincoln

    Google Scholar 

  19. Black N (2013) Patient reported outcome measures could help transform healthcare. Br Med J 346:1–5

    Article  Google Scholar 

  20. Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A et al (1993) The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol 11:570–579

    Article  CAS  PubMed  Google Scholar 

  21. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ et al (1993) The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376

    Article  CAS  PubMed  Google Scholar 

  22. Drotar D (1998) Measuring health-related quality of life in children and adolescents: implications for research and practice. Psychology Press, Mahwah, NJ

    Google Scholar 

  23. Klaassen RJ, Krahn M, Gaboury I, Hughes J, Anderson R, Grundy P et al (2010) Evaluating the ability to detect change of health‐related quality of life in children with Hodgkin disease. Cancer 116:1608–1614

    Article  PubMed  Google Scholar 

  24. Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M et al (2010) PRO development: rigorous qualitative research as the crucial foundation. Qual Life Res 19:1087–1096

    Article  PubMed  PubMed Central  Google Scholar 

  25. Nightingale CL, Quinn GP, Shenkman EA, Curbow BA, Zebrack BJ, Krull KR et al (2011) Health-related quality of life of young adult survivors of childhood cancer: a review of qualitative studies. J Adolesc Young Adult Oncol 1:124–132

    Article  PubMed  PubMed Central  Google Scholar 

  26. Quinn GP, Huang IC, Murphy D, Zidonik-Eddelton K, Krull KR (2013) Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res 22:111–118

    Article  PubMed  PubMed Central  Google Scholar 

  27. Kuhlthau K, Luff D, Delahaye J, Wong A, Yock T, Huang M, Park ER (2015) Health-related quality of life of adolescent and young adult survivors of central nervous system tumors: identifying domains from a survivor perspective. J Pediatr Oncol Nurs 1–9

    Google Scholar 

  28. Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K (2010) Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health Qual Life Outcomes 8:1–13

    Article  Google Scholar 

  29. Ward-Smith P, Hamlin J, Bartholemew J, Stegenga K (2007) Quality of life among adolescents with cancer. J Pediatr Oncol Nurs 24:166–171

    Article  PubMed  Google Scholar 

  30. Ward-Smith P, McCaskie B, Rhoton S (2007) Adolescent evaluated quality of life: a longitudinal study. J Pediatr Oncol Nurs 24:329–333

    Article  PubMed  Google Scholar 

  31. Bekkering WP, Vlieland TP, Koopman HM, Schaap GR, Schreuder HW, Beishuizen A et al (2009) The Bt-DUX: development of a subjective measure of health-related quality of life in patients who underwent surgery for lower extremity malignant bone tumor. Pediatr Blood Cancer 53:348–355

    Article  PubMed  Google Scholar 

  32. Hoyt MA, Cano SJ, Saigal CS, Stanton AL (2013) Health-related quality of life in young men with testicular cancer: validation of the Cancer Assessment for Young Adults (CAYA). J Cancer Surviv 7:630–640

    Article  PubMed  Google Scholar 

  33. Zebrack B (2009) Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer. J Cancer Surviv 3:174–180

    Article  PubMed  Google Scholar 

  34. Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W (2010) Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res 19:207–218

    Article  PubMed  PubMed Central  Google Scholar 

  35. Bhatia S, Jenney ME, Bogue MK, Rockwood TH, Feusner JH, Friedman DL, Robison LL, Kane RL (2002) The Minneapolis-Manchester quality of life instrument: reliability and validity of the adolescent form. J Clin Oncol 20:4692–4698

    Article  PubMed  Google Scholar 

  36. Hutchings HA, Upton P, Cheung WY, Maddocks A, Eiser C, Williams JG, Russell IT, Jackson S, Jenney ME (2007) Adaptation of the Manchester-Minneapolis quality of life instrument for use in the UK population. Arch Dis Child 92:855–860

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  37. Lai J, Cella D, Tomita T, Bode RK, Newmark M, Goldman S (2007) Developing a health-related quality of life instrument for childhood brain tumor survivors. Childs Nerv Syst 23:47–57

    Article  PubMed  Google Scholar 

  38. Palmer SN, Meeske KA, Katz ER, Burwinkle TM, Varni JW (2007) The PedsQOL™ brain tumor module: initial reliability and validity. Pediatr Blood Cancer 49:287–293

    Article  PubMed  Google Scholar 

  39. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P (2002) The PedsQOL™ in pediatric cancer. Reliability and validity of the pediatric quality of life inventory™ generic core scales, multidimensional fatigue scale, and cancer module. Cancer 94:2090–2106

    Article  PubMed  Google Scholar 

  40. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM (1998) The Pediatric Cancer Quality of Life Inventory (PCQOL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 21:179–204

    Article  CAS  PubMed  Google Scholar 

  41. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A (1998) The Pediatric Cancer Quality of Life Inventory-32 (PCQOL-32). I. Reliability and validity. Cancer 82:1184–1196

    Article  CAS  PubMed  Google Scholar 

  42. Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJ (1999) The Pediatric Cancer Quality of Life Inventory-32 (PCQOL-32). II. Feasibility and range of measurement. J Behav Med 22:397–406

    Article  CAS  PubMed  Google Scholar 

  43. Varni JW (2015) The PedsQL translations [Internet]. Available from: http://www.pedsql.org/translations.html

  44. Ferrell BR, Dow KH, Grant M (1995) Measurement of the quality of life in cancer survivors. Qual Life Res 4:523–531

    Article  CAS  PubMed  Google Scholar 

  45. Zebrack BJ, Chesler MA (2001) A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer. Qual Life Res 10:319–329

    Article  CAS  PubMed  Google Scholar 

  46. Yeh C, Chao K, Hung L (2004) The Quality of Life for Cancer Children (QOLCC) in Taiwan (part I): reliability and construct validity by confirmatory factor analysis. Psychooncology 13:161–170

    Article  PubMed  Google Scholar 

  47. Yeh C, Hung L, Chao K (2004) The Quality of Life for Cancer Children (QOLCC) for Taiwanese children with cancer (part II): feasibility, cross-informants variance and clinical validity. Psychooncology 13:171–176

    Article  PubMed  Google Scholar 

  48. Yeh C, Hung L (2003) Construct validity of newly developed quality of life assessment instrument for child and adolescent cancer patients in Taiwan. Psychooncology 12:345–356

    Article  PubMed  Google Scholar 

  49. Calaminus G, Weinspach S, Teske C, Göbel U (2000) Quality of life in children and adolescents with cancer. Klin Padiatr 212:211–215

    Article  CAS  PubMed  Google Scholar 

  50. Eiser C, Havermans T, Craft A, Kernahan J (1995) Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 72:302–307

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  51. Wu AW, Snyder C, Clancy CM, Steinwachs DM (2010) Adding the patient perspective to comparative effectiveness research. Health Aff 29:1863–1871

    Article  Google Scholar 

  52. Department of Health (2010) Equity and excellence: liberating the NHS [Internet]. London. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213823/dh_117794.pdf

  53. Spearman C (1904) The proof and measurement of association between two things. Am J Psychol 15:72–101

    Article  Google Scholar 

  54. Wainer H, Dorans NJ, Flaugher R, Green BF, Mislevy RJ (1990) Computerized adaptive testing: a primer. Lawrence Erlbaum Associates, Mahwah

    Google Scholar 

  55. Revicki D, Cella D (1997) Health status assessment for the twenty-first century: item response theory, item banking and computer adaptive testing. Qual Life Res 6:595–600

    Article  CAS  PubMed  Google Scholar 

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Author information

Authors and Affiliations

  1. Department of Pediatrics, McMaster University, Hamilton, ON, Canada

    Anne Klassen, Natasha Wickert & Elena Tsangaris

  2. Division of Hematology-Oncology, Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada

    Robert Klaassen

  3. Transplant and Regenerative Medicine Centre, Hospital for Sick Children, Toronto, ON, Canada

    Samantha Anthony

Authors
  1. Anne Klassen
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  2. Natasha Wickert
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  3. Elena Tsangaris
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  4. Robert Klaassen
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  5. Samantha Anthony
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Corresponding author

Correspondence to Anne Klassen .

Editor information

Editors and Affiliations

  1. Bend, Oregon, USA

    Archie Bleyer

  2. McMaster University, Hamilton, Ontario, Canada

    Ronald Barr

  3. RiesSearch LLC, Rockville, Maryland, USA

    Lynn Ries

  4. University College Hospital, London, United Kingdom

    Jeremy Whelan

  5. Pediatric Oncology Unit, National Tumor Institute, Milano, Italy

    Andrea Ferrari

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Klassen, A., Wickert, N., Tsangaris, E., Klaassen, R., Anthony, S. (2017). Health-Related Quality of Life. In: Bleyer, A., Barr, R., Ries, L., Whelan, J., Ferrari, A. (eds) Cancer in Adolescents and Young Adults. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-33679-4_30

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  • DOI: https://doi.org/10.1007/978-3-319-33679-4_30

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