Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2010

Open Access 01-12-2010 | Review

Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review

Authors: Tara Clinton-McHarg, Mariko Carey, Rob Sanson-Fisher, Anthony Shakeshaft, Kathy Rainbird

Published in: Health and Quality of Life Outcomes | Issue 1/2010

Login to get access

Abstract

Background

Adolescent and young adult (AYA) cancer survivors require psychometrically rigorous measures to assess their psychosocial well-being. Without methodologically adequate scales the accuracy of information obtained on the prevalence of needs, predictors of risk, and the potential success of any interventions, can be questioned. This review assessed the psychometric properties of measures designed specifically to identify the psychosocial health of this unique population.

Methods

Medline, PsycINFO, CINAHL and EMBASE databases were searched to identify measures developed to assess the psychosocial health of AYA cancer survivors. Searches were limited to the years 1998-2008. A search of Medline revealed that the number of publications related to the assessment of psychosocial well-being in AYA cancer survivors prior to this period were minimal. The psychometric properties of identified measures were evaluated against pre-determined and generally accepted psychometric criteria including: reliability (internal consistency and test-retest); validity (face, content, construct, and criterion); responsiveness; acceptability; and feasibility.

Results

Seven quality of life measures met the inclusion criteria. No measures of unmet need were identified. All seven measures reported adequate internal consistency, face, content, and construct validity. Test-retest reliability, criterion (predictive) validity, responsiveness, acceptability, and feasibility were rarely examined.

Conclusions

There is a need to further evaluate the psychometric properties of existing quality of life measures for AYA cancer survivors. Valid, reliable, and acceptable measures which can assess the psychosocial needs of this population should also be developed.
Appendix
Available only for authorised users
Literature
1.
go back to reference Mathers C, Lopez A, Murray C: The Burden of Disease and Mortality by Condition: Data, Methods and Results for 2001. In Global Burden of Disease and Risk Factors. Edited by: Lopez A, Mathers C, Ezzati M, Jamison D, Murray C. New York: Oxford University Press; 2006:45–93. 174. Mathers C, Lopez A, Murray C: The Burden of Disease and Mortality by Condition: Data, Methods and Results for 2001. In Global Burden of Disease and Risk Factors. Edited by: Lopez A, Mathers C, Ezzati M, Jamison D, Murray C. New York: Oxford University Press; 2006:45–93. 174.
2.
go back to reference Soliman H, Agresta SV: Current issues in adolescent and young adult cancer survivorship. Cancer Control 2008,15(1):55–62.PubMed Soliman H, Agresta SV: Current issues in adolescent and young adult cancer survivorship. Cancer Control 2008,15(1):55–62.PubMed
3.
go back to reference Pollock BH, Birch JM: Registration and classification of adolescent and young adult cancer cases. Pediatric Blood & Cancer 2008,50(5 Suppl):1090–1093.CrossRef Pollock BH, Birch JM: Registration and classification of adolescent and young adult cancer cases. Pediatric Blood & Cancer 2008,50(5 Suppl):1090–1093.CrossRef
4.
go back to reference Thomas DM, Seymour JF, O'Brien T, Sawyer SM, Ashley DM: Adolescent and young adult cancer: a revolution in evolution? Internal Medicine Journal 2006,36(5):302–307. 10.1111/j.1445-5994.2006.01062.xPubMedCrossRef Thomas DM, Seymour JF, O'Brien T, Sawyer SM, Ashley DM: Adolescent and young adult cancer: a revolution in evolution? Internal Medicine Journal 2006,36(5):302–307. 10.1111/j.1445-5994.2006.01062.xPubMedCrossRef
5.
go back to reference Desandes E: Survival from adolescent cancer. Cancer Treatment Reviews 2007,33(7):609–615. 10.1016/j.ctrv.2006.12.007PubMedCrossRef Desandes E: Survival from adolescent cancer. Cancer Treatment Reviews 2007,33(7):609–615. 10.1016/j.ctrv.2006.12.007PubMedCrossRef
6.
go back to reference Boyle P, Levin B: World Cancer Report 2008. Lyon: International Agency for Research on Cancer; 2008. Boyle P, Levin B: World Cancer Report 2008. Lyon: International Agency for Research on Cancer; 2008.
7.
go back to reference Birch JM, Pang D, Alston RD, Rowan S, Geraci M, Moran A, Eden TOB: Survival from cancer in teenagers and young adults in England, 1979–2003. British Journal of Cancer 2008,99(5):830–835. 10.1038/sj.bjc.6604460PubMedCentralPubMedCrossRef Birch JM, Pang D, Alston RD, Rowan S, Geraci M, Moran A, Eden TOB: Survival from cancer in teenagers and young adults in England, 1979–2003. British Journal of Cancer 2008,99(5):830–835. 10.1038/sj.bjc.6604460PubMedCentralPubMedCrossRef
8.
go back to reference Bleyer A, O'Leary M, Barr R, Ries L, eds: Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975–2000. Bethesda, MD: National Cancer Institute, NIH; 2006. Bleyer A, O'Leary M, Barr R, Ries L, eds: Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975–2000. Bethesda, MD: National Cancer Institute, NIH; 2006.
9.
go back to reference Gatta G, Zigon G, Capocaccia R, Coebergh JW, Desandes E, Kaatsch P, Pastore G, Peris-Bonet R, Stiller CA, Eurocare Working Group: Survival of European children and young adults with cancer diagnosed 1995–2002. European Journal of Cancer 2009,45(6):992–1005. 10.1016/j.ejca.2008.11.042PubMedCrossRef Gatta G, Zigon G, Capocaccia R, Coebergh JW, Desandes E, Kaatsch P, Pastore G, Peris-Bonet R, Stiller CA, Eurocare Working Group: Survival of European children and young adults with cancer diagnosed 1995–2002. European Journal of Cancer 2009,45(6):992–1005. 10.1016/j.ejca.2008.11.042PubMedCrossRef
10.
go back to reference Australian Institute of Health and Welfare: Young Australians: Their Health and Well-being 2007. Canberra: AIHW; 2007. Australian Institute of Health and Welfare: Young Australians: Their Health and Well-being 2007. Canberra: AIHW; 2007.
11.
go back to reference Evan EE, Zeltzer LK: Psychosocial dimensions of cancer in adolescents and young adults. Cancer 2006,107(7 Suppl):1663–1671. 10.1002/cncr.22107PubMedCrossRef Evan EE, Zeltzer LK: Psychosocial dimensions of cancer in adolescents and young adults. Cancer 2006,107(7 Suppl):1663–1671. 10.1002/cncr.22107PubMedCrossRef
12.
go back to reference Abrams AN, Hazen EP, Penson RT: Psychosocial issues in adolescents with cancer. Cancer Treatment Reviews 2007,33(7):622–630. 10.1016/j.ctrv.2006.12.006PubMedCrossRef Abrams AN, Hazen EP, Penson RT: Psychosocial issues in adolescents with cancer. Cancer Treatment Reviews 2007,33(7):622–630. 10.1016/j.ctrv.2006.12.006PubMedCrossRef
13.
go back to reference Whyte F, Smith L: A literature review of adolescence and cancer. European Journal of Cancer Care 1997,6(2):137–146. 10.1046/j.1365-2354.1997.00022.xPubMedCrossRef Whyte F, Smith L: A literature review of adolescence and cancer. European Journal of Cancer Care 1997,6(2):137–146. 10.1046/j.1365-2354.1997.00022.xPubMedCrossRef
14.
go back to reference Rowland JH, Hewitt M, Ganz PA: Cancer Survivorship: A New Challenge in Delivering Quality Cancer Care. J Clin Oncol 2006,24(32):5101–5104. 10.1200/JCO.2006.09.2700PubMedCrossRef Rowland JH, Hewitt M, Ganz PA: Cancer Survivorship: A New Challenge in Delivering Quality Cancer Care. J Clin Oncol 2006,24(32):5101–5104. 10.1200/JCO.2006.09.2700PubMedCrossRef
15.
go back to reference Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Tersak JM, Ness KK: Social outcomes in the Childhood Cancer Survivor Study cohort. Journal of Clinical Oncology 2009,27(14):2390–2395. 10.1200/JCO.2008.21.1458PubMedCentralPubMedCrossRef Gurney JG, Krull KR, Kadan-Lottick N, Nicholson HS, Nathan PC, Zebrack B, Tersak JM, Ness KK: Social outcomes in the Childhood Cancer Survivor Study cohort. Journal of Clinical Oncology 2009,27(14):2390–2395. 10.1200/JCO.2008.21.1458PubMedCentralPubMedCrossRef
16.
go back to reference Zebrack BJ, Chesler MA: A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer. Quality of Life Research 2001,10(4):319–329. 10.1023/A:1012228823115PubMedCrossRef Zebrack BJ, Chesler MA: A psychometric analysis of the Quality of Life-Cancer Survivors (QOL-CS) in survivors of childhood cancer. Quality of Life Research 2001,10(4):319–329. 10.1023/A:1012228823115PubMedCrossRef
17.
go back to reference Ameringer S, Serlin RC, Hughes SH, Frierdich SA, Ward S: Concerns about pain management among adolescents with cancer: developing the Adolescent Barriers Questionnaire. Journal of Pediatric Oncology Nursing 2006,23(4):220–232. 10.1177/1043454206289736PubMedCrossRef Ameringer S, Serlin RC, Hughes SH, Frierdich SA, Ward S: Concerns about pain management among adolescents with cancer: developing the Adolescent Barriers Questionnaire. Journal of Pediatric Oncology Nursing 2006,23(4):220–232. 10.1177/1043454206289736PubMedCrossRef
18.
go back to reference Bleyer WA: Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Medical & Pediatric Oncology 2002,38(1):1–10.CrossRef Bleyer WA: Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Medical & Pediatric Oncology 2002,38(1):1–10.CrossRef
19.
go back to reference Evan EE, Kaufman M, Cook AB, Zeltzer LK: Sexual health and self-esteem in adolescents and young adults with cancer. Cancer 2006,107(7 Suppl):1672–1679. 10.1002/cncr.22101PubMedCrossRef Evan EE, Kaufman M, Cook AB, Zeltzer LK: Sexual health and self-esteem in adolescents and young adults with cancer. Cancer 2006,107(7 Suppl):1672–1679. 10.1002/cncr.22101PubMedCrossRef
20.
go back to reference Jones BL: Promoting healthy development among survivors of adolescent cancer. Family & Community Health 2008,31(Suppl 1):S61–70.CrossRef Jones BL: Promoting healthy development among survivors of adolescent cancer. Family & Community Health 2008,31(Suppl 1):S61–70.CrossRef
21.
go back to reference Bleyer A: Young adult oncology: the patients and their survival challenges. CA: a Cancer Journal for Clinicians 2007,57(4):242–255. 10.3322/canjclin.57.4.242 Bleyer A: Young adult oncology: the patients and their survival challenges. CA: a Cancer Journal for Clinicians 2007,57(4):242–255. 10.3322/canjclin.57.4.242
22.
go back to reference Hedstrom M, Kreuger A, Ljungman G, Nygren P, von Essen L: Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer. Pediatric Blood & Cancer 2006,46(7):773–779.CrossRef Hedstrom M, Kreuger A, Ljungman G, Nygren P, von Essen L: Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer. Pediatric Blood & Cancer 2006,46(7):773–779.CrossRef
23.
go back to reference Janiszewski PM, Oeffinger KC, Church TS, Dunn AL, Eshelman DA, Victor RG, Brooks S, Turoff AJ, Sinclair E, Murray JC, Bashore L, Ross R: Abdominal obesity, liver fat, and muscle composition in survivors of childhood acute lymphoblastic leukemia. Journal of Clinical Endocrinology & Metabolism 2007,92(10):3816–3821.CrossRef Janiszewski PM, Oeffinger KC, Church TS, Dunn AL, Eshelman DA, Victor RG, Brooks S, Turoff AJ, Sinclair E, Murray JC, Bashore L, Ross R: Abdominal obesity, liver fat, and muscle composition in survivors of childhood acute lymphoblastic leukemia. Journal of Clinical Endocrinology & Metabolism 2007,92(10):3816–3821.CrossRef
24.
go back to reference Langeveld NE, Stam H, Grootenhuis MA, Last BF: Quality of life in young adult survivors of childhood cancer. Supportive Care in Cancer 2002,10(8):579–600. 10.1007/s00520-002-0388-6PubMedCrossRef Langeveld NE, Stam H, Grootenhuis MA, Last BF: Quality of life in young adult survivors of childhood cancer. Supportive Care in Cancer 2002,10(8):579–600. 10.1007/s00520-002-0388-6PubMedCrossRef
25.
go back to reference Pang JWY, Friedman DL, Whitton JA, Stovall M, Mertens AC, Robison LL, Weiss NS: Employment status among adult survivors in the Childhood Cancer Survivor Study. Pediatric Blood & Cancer 2008,50(1):104–110.CrossRef Pang JWY, Friedman DL, Whitton JA, Stovall M, Mertens AC, Robison LL, Weiss NS: Employment status among adult survivors in the Childhood Cancer Survivor Study. Pediatric Blood & Cancer 2008,50(1):104–110.CrossRef
26.
go back to reference Langeveld NE, Ubbink MC, Last BF, Grootenhuis MA, Voute PA, De Haan RJ: Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psycho-Oncology 2003,12(3):213–225. 10.1002/pon.628PubMedCrossRef Langeveld NE, Ubbink MC, Last BF, Grootenhuis MA, Voute PA, De Haan RJ: Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psycho-Oncology 2003,12(3):213–225. 10.1002/pon.628PubMedCrossRef
27.
go back to reference Shalet S, Brennan B: Puberty in Children with Cancer. Hormone Research 2002,57(S2):39–42. 10.1159/000058099PubMedCrossRef Shalet S, Brennan B: Puberty in Children with Cancer. Hormone Research 2002,57(S2):39–42. 10.1159/000058099PubMedCrossRef
28.
go back to reference Pacey AA: Fertility issues in survivors from adolescent cancers. Cancer Treatment Reviews 2007,33(7):646–655. 10.1016/j.ctrv.2007.02.001PubMedCrossRef Pacey AA: Fertility issues in survivors from adolescent cancers. Cancer Treatment Reviews 2007,33(7):646–655. 10.1016/j.ctrv.2007.02.001PubMedCrossRef
29.
go back to reference Bloom JR, Petersen DM, Kang SH: Multi-dimensional quality of life among long-term (5+ years) adult cancer survivors. Psycho-Oncology 2007,16(8):691–706. 10.1002/pon.1208PubMedCrossRef Bloom JR, Petersen DM, Kang SH: Multi-dimensional quality of life among long-term (5+ years) adult cancer survivors. Psycho-Oncology 2007,16(8):691–706. 10.1002/pon.1208PubMedCrossRef
30.
go back to reference Calman K: Definitions and Dimensions of Quality of Life. In Quality of Life of Cancer Patients. Edited by: Aaronson N, Beckman J. New York: Raven Press; 1987:1–10. Calman K: Definitions and Dimensions of Quality of Life. In Quality of Life of Cancer Patients. Edited by: Aaronson N, Beckman J. New York: Raven Press; 1987:1–10.
31.
go back to reference Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Group: Evaluation of an instrument to assess the needs of patients with cancer. Cancer 2000,88(1):217–225. 10.1002/(SICI)1097-0142(20000101)88:1<217::AID-CNCR29>3.0.CO;2-YPubMedCrossRef Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A, Supportive Care Review Group: Evaluation of an instrument to assess the needs of patients with cancer. Cancer 2000,88(1):217–225. 10.1002/(SICI)1097-0142(20000101)88:1<217::AID-CNCR29>3.0.CO;2-YPubMedCrossRef
32.
go back to reference Rainbird KJ, Perkins JJ, Sanson-Fisher RW: The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. a study of validity, reliability and acceptability. Psycho-Oncology 2005,14(4):297–306. 10.1002/pon.845PubMedCrossRef Rainbird KJ, Perkins JJ, Sanson-Fisher RW: The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. a study of validity, reliability and acceptability. Psycho-Oncology 2005,14(4):297–306. 10.1002/pon.845PubMedCrossRef
33.
go back to reference Pearce NJM, Sanson-Fisher R, Campbell HS: Measuring quality of life in cancer survivors: a methodological review of existing scales. Psycho-Oncology 2008,17(7):629–640. 10.1002/pon.1281PubMedCrossRef Pearce NJM, Sanson-Fisher R, Campbell HS: Measuring quality of life in cancer survivors: a methodological review of existing scales. Psycho-Oncology 2008,17(7):629–640. 10.1002/pon.1281PubMedCrossRef
34.
go back to reference Wen K-Y, Gustafson DH: Needs assessment for cancer patients and their families. Health & Quality of Life Outcomes 2004, 2: 11.CrossRef Wen K-Y, Gustafson DH: Needs assessment for cancer patients and their families. Health & Quality of Life Outcomes 2004, 2: 11.CrossRef
35.
go back to reference Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K: Quality of life among adolescents with cancer. Journal of Pediatric Oncology Nursing 2007,24(3):166–171. 10.1177/1043454207299656PubMedCrossRef Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K: Quality of life among adolescents with cancer. Journal of Pediatric Oncology Nursing 2007,24(3):166–171. 10.1177/1043454207299656PubMedCrossRef
36.
go back to reference Ward-Smith P, McCaskie B, Rhoton S: Adolescent-evaluated quality of life: a longitudinal study. Journal of Pediatric Oncology Nursing 2007,24(6):329–333. 10.1177/1043454207308067PubMedCrossRef Ward-Smith P, McCaskie B, Rhoton S: Adolescent-evaluated quality of life: a longitudinal study. Journal of Pediatric Oncology Nursing 2007,24(6):329–333. 10.1177/1043454207308067PubMedCrossRef
37.
go back to reference Eiser C, Morse R: A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood 2001,84(3):205–211. 10.1136/adc.84.3.205PubMedCentralPubMedCrossRef Eiser C, Morse R: A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood 2001,84(3):205–211. 10.1136/adc.84.3.205PubMedCentralPubMedCrossRef
38.
go back to reference Eiser C, Morse R: Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment 2001,5(4):1–157.PubMedCrossRef Eiser C, Morse R: Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment 2001,5(4):1–157.PubMedCrossRef
39.
go back to reference Solans M, Pane S, Estrada M-D, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L: Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health 2008,11(4):742–764. 10.1111/j.1524-4733.2007.00293.xPubMedCrossRef Solans M, Pane S, Estrada M-D, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L: Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health 2008,11(4):742–764. 10.1111/j.1524-4733.2007.00293.xPubMedCrossRef
40.
go back to reference Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Quality of Life Research 2001,10(4):347–357. 10.1023/A:1012253723272PubMedCrossRef Eiser C, Morse R: Can parents rate their child's health-related quality of life? Results of a systematic review. Quality of Life Research 2001,10(4):347–357. 10.1023/A:1012253723272PubMedCrossRef
41.
go back to reference Lynn Snow A, Cook KF, Lin P-S, Morgan RO, Magaziner J: Proxies and other external raters: methodological considerations. Health Services Research 2005,40(5 Pt 2):1676–1693. 10.1111/j.1475-6773.2005.00447.xPubMedCentralPubMedCrossRef Lynn Snow A, Cook KF, Lin P-S, Morgan RO, Magaziner J: Proxies and other external raters: methodological considerations. Health Services Research 2005,40(5 Pt 2):1676–1693. 10.1111/j.1475-6773.2005.00447.xPubMedCentralPubMedCrossRef
42.
go back to reference Lohr KN, Aaronson NK, Alonso J, Burnam MA, Patrick DL, Perrin EB, Roberts JS: Evaluating quality-of-life and health status instruments: development of scientific review criteria. Clinical Therapeutics 1996,18(5):979–992. 10.1016/S0149-2918(96)80054-3PubMedCrossRef Lohr KN, Aaronson NK, Alonso J, Burnam MA, Patrick DL, Perrin EB, Roberts JS: Evaluating quality-of-life and health status instruments: development of scientific review criteria. Clinical Therapeutics 1996,18(5):979–992. 10.1016/S0149-2918(96)80054-3PubMedCrossRef
43.
go back to reference Anastasi A, Urbina S: Psychological Testing. Upper Saddle River, NJ: Prentice Hall; 1997. Anastasi A, Urbina S: Psychological Testing. Upper Saddle River, NJ: Prentice Hall; 1997.
44.
go back to reference McDowell I: Measuring Health: A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 2006.CrossRef McDowell I: Measuring Health: A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 2006.CrossRef
45.
go back to reference Mokkink L, Terwee C, Stratford P, Alonso J, Patrick D, Riphagen I, Knol D, Bouter L, de Vet H: Evaluation of the methodological quality of systematic reviews of health status measurement instruments. Quality of Life Research 2009,18(3):313–333. 10.1007/s11136-009-9451-9PubMedCrossRef Mokkink L, Terwee C, Stratford P, Alonso J, Patrick D, Riphagen I, Knol D, Bouter L, de Vet H: Evaluation of the methodological quality of systematic reviews of health status measurement instruments. Quality of Life Research 2009,18(3):313–333. 10.1007/s11136-009-9451-9PubMedCrossRef
46.
go back to reference Marx RG, Menezes A, Horovitz L, Jones EC, Warren RF: A comparison of two time intervals for test-retest reliability of health status instruments. Journal of Clinical Epidemiology 2003,56(8):730–735. 10.1016/S0895-4356(03)00084-2PubMedCrossRef Marx RG, Menezes A, Horovitz L, Jones EC, Warren RF: A comparison of two time intervals for test-retest reliability of health status instruments. Journal of Clinical Epidemiology 2003,56(8):730–735. 10.1016/S0895-4356(03)00084-2PubMedCrossRef
47.
go back to reference Viswanathan M: Measurement Error and Research Design. CA: Sage Publications; 2005. Viswanathan M: Measurement Error and Research Design. CA: Sage Publications; 2005.
48.
go back to reference Cohen J: Statistical Power Analysis for the Behavioural Sciences. Hillsdale, NJ: Erlbaum; 1988. Cohen J: Statistical Power Analysis for the Behavioural Sciences. Hillsdale, NJ: Erlbaum; 1988.
49.
go back to reference Kaiser H: Directional statistical decisions. Psychological Review 1960,67(3):160–167. 10.1037/h0047595PubMedCrossRef Kaiser H: Directional statistical decisions. Psychological Review 1960,67(3):160–167. 10.1037/h0047595PubMedCrossRef
50.
go back to reference Streiner D, Norman G: Health Measurement Scales: A Practical Guide to their Development and Use. Fourth edition. New York: Oxford University Press; 2008.CrossRef Streiner D, Norman G: Health Measurement Scales: A Practical Guide to their Development and Use. Fourth edition. New York: Oxford University Press; 2008.CrossRef
51.
go back to reference Pedhazur E, Schmelkin L: Measurement, Design, and Analysis: An Integrated Approach. Hillsdale, NJ: Lawrence Erlbaum Associates; 1991. Pedhazur E, Schmelkin L: Measurement, Design, and Analysis: An Integrated Approach. Hillsdale, NJ: Lawrence Erlbaum Associates; 1991.
52.
go back to reference Bhatia S, Jenney ME, Bogue MK, Rockwood TH, Feusner JH, Friedman DL, Robison LL, Kane RL: The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. Journal of Clinical Oncology 2002,20(24):4692–4698. 10.1200/JCO.2002.05.103PubMedCrossRef Bhatia S, Jenney ME, Bogue MK, Rockwood TH, Feusner JH, Friedman DL, Robison LL, Kane RL: The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. Journal of Clinical Oncology 2002,20(24):4692–4698. 10.1200/JCO.2002.05.103PubMedCrossRef
53.
go back to reference Hutchings HA, Upton P, Cheung WY, Maddocks A, Eiser C, Williams JG, Russell IT, Jackson S, Jenney MEM: Adaptation of the Manchester-Minneapolis Quality of Life instrument for use in the UK population. Archives of Disease in Childhood 2007,92(10):855–860. 10.1136/adc.2006.098947PubMedCentralPubMedCrossRef Hutchings HA, Upton P, Cheung WY, Maddocks A, Eiser C, Williams JG, Russell IT, Jackson S, Jenney MEM: Adaptation of the Manchester-Minneapolis Quality of Life instrument for use in the UK population. Archives of Disease in Childhood 2007,92(10):855–860. 10.1136/adc.2006.098947PubMedCentralPubMedCrossRef
54.
go back to reference Cantrell MA, Lupinacci P: Investigating the determinants of health-related quality of life among childhood cancer survivors. Journal of Advanced Nursing 2008,64(1):73–83. 10.1111/j.1365-2648.2008.04760.xPubMedCrossRef Cantrell MA, Lupinacci P: Investigating the determinants of health-related quality of life among childhood cancer survivors. Journal of Advanced Nursing 2008,64(1):73–83. 10.1111/j.1365-2648.2008.04760.xPubMedCrossRef
55.
go back to reference Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002,94(7):2090–2106. 10.1002/cncr.10428PubMedCrossRef Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002,94(7):2090–2106. 10.1002/cncr.10428PubMedCrossRef
56.
go back to reference Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R: Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research 2004,13(1):223–234. 10.1023/B:QURE.0000015305.44181.e3PubMedCrossRef Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R: Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research 2004,13(1):223–234. 10.1023/B:QURE.0000015305.44181.e3PubMedCrossRef
57.
go back to reference Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ: Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health & Quality of Life Outcomes 2008, 6: 7.CrossRef Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ: Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health & Quality of Life Outcomes 2008, 6: 7.CrossRef
58.
go back to reference Ewing JE, King MT, Smith NF: Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder. Quality of Life Research 2009,18(2):231–244. 10.1007/s11136-008-9424-4PubMedCrossRef Ewing JE, King MT, Smith NF: Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder. Quality of Life Research 2009,18(2):231–244. 10.1007/s11136-008-9424-4PubMedCrossRef
59.
go back to reference Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM: The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine 1998,21(2):179–204. 10.1023/A:1018779908502PubMedCrossRef Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM: The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine 1998,21(2):179–204. 10.1023/A:1018779908502PubMedCrossRef
60.
go back to reference Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A: The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998,82(6):1184–1196. 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1PubMedCrossRef Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A: The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998,82(6):1184–1196. 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1PubMedCrossRef
61.
go back to reference Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJ: The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement. Journal of Behavioral Medicine 1999,22(4):397–406. 10.1023/A:1018730204210PubMedCrossRef Varni JW, Rode CA, Seid M, Katz ER, Friedman-Bender A, Quiggins DJ: The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32). II. Feasibility and range of measurement. Journal of Behavioral Medicine 1999,22(4):397–406. 10.1023/A:1018730204210PubMedCrossRef
62.
go back to reference Seid M, Varni JW, Rode CA, Katz ER: The Pediatric Cancer Quality of Life Inventory: a modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer - Supplement 1999, 12: 71–76. 10.1002/(SICI)1097-0215(1999)83:12+<71::AID-IJC13>3.0.CO;2-5CrossRef Seid M, Varni JW, Rode CA, Katz ER: The Pediatric Cancer Quality of Life Inventory: a modular approach to measuring health-related quality of life in children with cancer. International Journal of Cancer - Supplement 1999, 12: 71–76. 10.1002/(SICI)1097-0215(1999)83:12+<71::AID-IJC13>3.0.CO;2-5CrossRef
63.
go back to reference Eiser C, Havermans T, Craft A, Kernahan J: Development of a measure to assess the perceived illness experience after treatment for cancer. Archives of Disease in Childhood 1995,72(4):302–307. 10.1136/adc.72.4.302PubMedCentralPubMedCrossRef Eiser C, Havermans T, Craft A, Kernahan J: Development of a measure to assess the perceived illness experience after treatment for cancer. Archives of Disease in Childhood 1995,72(4):302–307. 10.1136/adc.72.4.302PubMedCentralPubMedCrossRef
64.
go back to reference Eiser C, Kopel S, Cool P, Grimer R: The Perceived Illness Experience Scale (PIE): reliability and validity revisited. Child: Care, Health & Development 1999,25(3):179–190. Eiser C, Kopel S, Cool P, Grimer R: The Perceived Illness Experience Scale (PIE): reliability and validity revisited. Child: Care, Health & Development 1999,25(3):179–190.
65.
go back to reference Evans SE, Radford M: Current lifestyle of young adults treated for cancer in childhood. Archives of Disease in Childhood 1995,72(5):423–426. 10.1136/adc.72.5.423PubMedCentralPubMedCrossRef Evans SE, Radford M: Current lifestyle of young adults treated for cancer in childhood. Archives of Disease in Childhood 1995,72(5):423–426. 10.1136/adc.72.5.423PubMedCentralPubMedCrossRef
66.
go back to reference Minton O, Stone P: A systematic review of the scales used for the measurement of cancer-related fatigue (CRF). Annals of Oncology 2009,20(1):17–25. 10.1093/annonc/mdn537PubMedCrossRef Minton O, Stone P: A systematic review of the scales used for the measurement of cancer-related fatigue (CRF). Annals of Oncology 2009,20(1):17–25. 10.1093/annonc/mdn537PubMedCrossRef
67.
go back to reference Kirkova J, Davis MP, Walsh D, Tiernan E, O'Leary N, LeGrand SB, Lagman RL, Russell KM: Cancer symptom assessment instruments: a systematic review. Journal of Clinical Oncology 2006,24(9):1459–1473. 10.1200/JCO.2005.02.8332PubMedCrossRef Kirkova J, Davis MP, Walsh D, Tiernan E, O'Leary N, LeGrand SB, Lagman RL, Russell KM: Cancer symptom assessment instruments: a systematic review. Journal of Clinical Oncology 2006,24(9):1459–1473. 10.1200/JCO.2005.02.8332PubMedCrossRef
Metadata
Title
Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review
Authors
Tara Clinton-McHarg
Mariko Carey
Rob Sanson-Fisher
Anthony Shakeshaft
Kathy Rainbird
Publication date
01-12-2010
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2010
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-8-25

Other articles of this Issue 1/2010

Health and Quality of Life Outcomes 1/2010 Go to the issue