Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments

References

• Thomas DM, Albritton KH, Ferrari A. Adolescent and young adult oncology: an emerging field. J Clin Oncol. 2010;28(32):4781–4782.
   PubMed Web of Science ®Google Scholar
• Seitz D, Besier T, Debatin KM, et al. Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer. 2010;46(9):1596–1606.
   PubMed Web of Science ®Google Scholar
• Juvakka T, Kylmä J. Hope in adolescents with cancer. Eur J Oncol Nurs. 2009;13(3):193–199.
   Web of Science ®Google Scholar
• Haase JE, Phillips CR. The adolescent/young adult experience. J Ped Onc Nurs. 2004;21(3):145–149.
   PubMedGoogle Scholar
• Bellizzi KM, Smith A, Schmidt S, et al; Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study Collaborative Group. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012;118(20):5155–5162.
   PubMed Web of Science ®Google Scholar
• Felder-Puig R, Gallo A, Waldenmair M, Gadner H, Topf R. The TCCS – a short measure to evaluate treatment-related coping and compliance in hospitalised childhood cancer patients and their primary caregivers. Support Care Cancer. 2004;12(1):41–47.
   Web of Science ®Google Scholar
• Seitz DC, Besier T, Goldbeck L. Psychosocial interventions for adolescent cancer patients: a systematic review of the literature. Psychooncology. 2009;18(7):683–690.
   Web of Science ®Google Scholar
• Sansom-Daly UM, Wakefield CE, Bryant RA, et al. Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA. BMC Cancer. 2012;12(1):339.
   PubMedGoogle Scholar
• Kazak AE, Simms S, Barakat L, et al. Surviving cancer competently intervention program (SCCIP): a cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Fam Process. 1999;38(2):175–191.
   PubMed Web of Science ®Google Scholar
• Tonorezos ES, Oeffinger KC. Research challenges in adolescent and young adult cancer survivor research. Cancer. 2011;117(S10):2295–2300.
   Google Scholar
• Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol. 2010;28(32):4800–4809.
   PubMed Web of Science ®Google Scholar
• Morgan S, Davies S, Palmer S, Plaster M. Sex, drugs, and rock ‘n’ roll: caring for adolescents and young adults with cancer. J Clin Oncol. 2010;28(32):4825–4830.
   Web of Science ®Google Scholar
• Nagel K, Wizowski L, Duckworth J, Cassano J, Hahn SA, Neal M. Using plain language skills to create an educational brochure about sperm banking for adolescent and young adult males with cancer. J Ped Onc Nurs. 2008;25(4):220–226.
   Web of Science ®Google Scholar
• Jones BL, Parker-Raley J, Barczyk A. Adolescent cancer survivors: identity paradox and the need to belong. QualHealth Res. 2011;21(8):1033–1040.
   PubMed Web of Science ®Google Scholar
• Schiffman JD, Csongradi E, Suzuki LK. Internet use among adolescent and young adults (AYA) with cancer. Pediatr Blood Cancer. 2008;51(3):410–415.
   Web of Science ®Google Scholar
• Burke ME, Albritton K, Marina N. Challenges in the recruitment of adolescents and young adults to cancer clinical trials. Cancer. 2007;110(11):2385–2393.
   Web of Science ®Google Scholar
• Martin S, Ulrich C, Munsell M, Taylor S, Lange G, Bleyer A. Delays in cancer diagnosis in underinsured young adults and older adolescents. Oncologist. 2007;12(7):816–824.
   PubMed Web of Science ®Google Scholar
• Wakefield CE, McLoone JK, Fleming CAK, et al. Adolescent cancer and health-related decision-making: An Australian multi-perspective family analysis of appointment attendance and involvement in medical and lifestyle choices. J Adolesc Young Adult Oncol. 2012;1(4):173–180.
   Web of Science ®Google Scholar
• Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012;30(11):1221–1226.
   Web of Science ®Google Scholar
• Ferrari A, Montello M, Budd T, Bleyer A. The challenges of clinical trials for adolescents and young adults with cancer. Pediatr Blood Cancer. 2008;50(S5):1101–1104.
   Google Scholar
• Sender LS. Approaches to increasing clinical trial access and enrollment for adolescents and young adults with cancer. J Adolesc Young Adult Oncol. 2011;1(2):69.
   Web of Science ®Google Scholar
• Aubin S. Challenges conducting qualitative psychosocial research for adolescent and young adult patients and survivors. J Adolesc Young Adult Oncol. 2011;1(2):71–76.
   Web of Science ®Google Scholar
• Ferrari A, Thomas D, Franklin ARK, et al. Starting an adolescent and young adult program: Some success stories and some obstacles to overcome. J Clin Oncol. 2010;28(32):4850–4857.
   PubMed Web of Science ®Google Scholar
• Quinn GP, Vadaparampil ST. Fertility preservation and adolescent/ young adult cancer patients: Physician communication challenges. J Adolesc Health. 2009;44(4):394–400.
   PubMed Web of Science ®Google Scholar
• Burke CA. Mindfulness-based approaches with children and adolescents: A preliminary review of current research in an emergent field. J Child Fam Stud. 2010;19(2):133–144.
   Web of Science ®Google Scholar
• Mokkink LB, Terwee CB, Stratford PW, et al. Evaluation of the methodological quality of systematic reviews of health status measurement instruments. Qual Life Res. 2009;18(3):313–333.
   PubMed Web of Science ®Google Scholar
• Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K. Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health Qual Life Outcomes. 2010;8(1):25.
   Google Scholar
• Bryman A, Cramer D. Quantitative Data Analysis for Social Scientists. Revised ed. London: Routledge; 1994.
   Google Scholar
• McDowell I, Newell C. Measuring Health: A Guide to Rating Scales and Questionnaires. 2nd ed. New York: Oxford University Press; 1996.
   Google Scholar
• Streiner D, Norman G. Health Measurement Scales. Oxford: Oxford University Press; 1995.
   Google Scholar
• Nunnally J. Introduction to Psychological Measurement. New York: McGraw-Hill; 1970.
   Google Scholar
• Stewart JL, Lynn MR, Mishel MH. Psychometric evaluation of a new instrument to measure uncertainty in children and adolescents with cancer. Nurs Res. 2010;59(2):119–126.
   Web of Science ®Google Scholar
• CanTeen. Adolescent and Young Adult Oncology Psychosocial Care Manual. Australia: CanTeen; 2011.
   Google Scholar
• Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliat Support Care. 2012. In press.
   Web of Science ®Google Scholar
• Patel SK, Mullins W, Turk A, Dekel N, Kinjo C, Sato JK. Distress screening, rater agreement, and services in pediatric oncology. Psychooncology. 2011;20(12):1324–1333.
   PubMed Web of Science ®Google Scholar
• Liptak C, Manley P, Recklitis C. The feasibility of a psychosocial screening program for survivors of pediatric brain tumors. Neuro Oncol. 2012;14:i136.
   Web of Science ®Google Scholar
• Chien TW, Wang WC, Chien CC, Hwang WS. Rasch analysis of positive changes following adversity in cancer patients attending community support groups. Psychooncology. 2011;20(1):98–105.
   PubMed Web of Science ®Google Scholar
• Phillips-Salimi CR, Haase JE, Kintner EK, Monahan PO, Azzouz F. Psychometric properties of the Herth Hope Index in adolescents and young adults with cancer. J Nurs Meas. 2007;15(1):3–23.
   Google Scholar
• Currier JM, Hermes S, Phipps S. Brief report: Children’s response to serious illness: Perceptions of benefit and burden in a pediatric cancer population. J Pediatr Psychol. 2009;34(10):1129–1134.
   PubMed Web of Science ®Google Scholar
• Liebenberg L, Ungar M, Van de Vijver F. Validation of the child and youth resilience measure-28 (CYRM-28) among Canadian youth. Res Soc Work Pract. 2012;22(2):219–226.
   Web of Science ®Google Scholar
• Starfield B, Ensminger M, Riley A, et al. Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics. 1993;91(2):430–435.
   PubMed Web of Science ®Google Scholar
• Goodman R. Psychometric properties of the strengths and difficulties questionnaire. J Am Acad Child Adolesc Psychiatry. 2001 ;40(11):1337–1345.
   PubMed Web of Science ®Google Scholar
• Barakat LP, Alderfer MA, Kazak AE. Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr Psychol. 2006;31(4):413–419.
   PubMed Web of Science ®Google Scholar
• Clinton-McHarg T, Carey M, Sanson-Fisher R, D’Este C, Shakeshaft A. Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire – Young People (CNQ-YP). Health Qual Life Outcomes. 2012;10:13.
   Web of Science ®Google Scholar
• Boyes A, Girgis A, Lecathelinais C. Brief assessment of adult cancer patients’ perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). J Eval Clin Pract. 2009;15(4):602–606.
   PubMed Web of Science ®Google Scholar
• Cossich T, Schofield P, McLachlan S. Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res. 2004;13(7):1225–1233.
   PubMed Web of Science ®Google Scholar
• Coyle N, Goldstein ML, Passik S, Fishman B, Portenoy R. Development and validation of a patient needs assessment tool (PNAT) for oncology clinicians. Cancer Nurs. 1996;19(2):81.
   Web of Science ®Google Scholar
• Ross L, Petersen MA, Johnsen AT, Lundstrom LH, Groenvold M. Are different groups of cancer patients offered rehabilitation to the same extent? A report from the population-based study “The Cancer Patient’s World”. Support Care Cancer. 2012;20(5):1089–1100.
   Web of Science ®Google Scholar
• Wu LM, Chin CC, Chen CH, Lai FC, Tseng YY. Development and validation of the paediatric cancer coping scale. J Adv Nurs. 2011;67(5):1142–1151.
   Web of Science ®Google Scholar
• Schwartz CE, Daltroy LH, Brandt U, Friedman R, Stolbach L. A psychometric analysis of the Mental Adjustment to Cancer scale. Psychol Med. 1992;22(01):203–210.
   Google Scholar
• Spirito A, Stark LJ, Williams C. Development of a brief coping checklist for use with pediatric populations. J Pediatr Psychol. 1988;13(4):555–574.
   PubMed Web of Science ®Google Scholar
• Brown RT, Kaslow NJ, Hazzard AP, et al. Psychiatric and family functioning in children with leukemia and their parents. J Am Acad Child Adolesc Psychiatry. 1992;31(3):495–502.
   Web of Science ®Google Scholar
• Trask PC, Paterson AG, Trask CL, Bares CB, Birt J, Maan C. Parent and adolescent adjustment to pediatric cancer: associations with coping, social support, and family function. J Ped Onc Nurs. 2003;20(1):36–47.
   PubMedGoogle Scholar
• 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. Qual Life Res. 2009;18(2):231–244.
   Web of Science ®Google Scholar
• Zebrack B, Chesler M. A psychometric analysis of the Quality of Life- Cancer Survivors (QOL-CS) in survivors of childhood cancer. Qual. Life Res. 2001;10(4):319–329.
   Web of Science ®Google Scholar
• Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K. Quality of life among adolescents with cancer. J Ped Onc Nurs. 2007;24(3):166–171.
   Web of Science ®Google Scholar
• Ward-Smith P, McCaskie B, Rhoton S. Adolescent-evaluated quality of life: a longitudinal study. J Ped Onc Nurs. 2007;24(6):329–333.
   Web of Science ®Google Scholar
• Zebrack BJ, Ganz PA, Bernaards CA, Petersen L, Abraham L. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psychooncology. 2006;15(5):407–421.
   PubMed Web of Science ®Google Scholar
• Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W. Psychometric evaluation of the Impact of Cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res. 2010;19(2):207–218.
   Web of Science ®Google Scholar
• Bhatia S, Jenney ME, Bogue MK, et al. The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. J Clin Oncol. 2002;20(24):4692–4698.
   PubMed Web of Science ®Google Scholar
• Varni JW, Burwinkle TM, Katz ER, et al. 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.
   PubMed Web of Science ®Google Scholar
• Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A. The pediatric cancer quality of life inventory-32 (PCQL-32). Cancer. 1998;82(6):1184–1196.
   Web of Science ®Google Scholar
• 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. Int J Cancer Suppl. 1999;12:71–76.
   Google Scholar
• Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child. 1995;72(4):302–307.
   Web of Science ®Google Scholar
• Eiser C, Kopel S, Cool P, Grimer R. The Perceived Illness Experience Scale (PIE): reliability and validity revisited. Child Care Health Dev. 1999;25(3):179–190.
   Web of Science ®Google Scholar
• Park CL, Wortmann JH, Hale-Smith AE, Cho D, Blank TO. Assessing quality of life in young adult cancer survivors: validity of the Survivorship-related Quality of Life Scale. American Psychological Association National Convention; August 2–5, 2012, 2012; Orlando, FL, USA.
   Google Scholar
• Park CL, Wortmann JH, Hale-Smith AE, Cho D, Blank TO. Assessing quality of life in young adult cancer survivors: development of the survivorship-related Quality of Life Scale. 6th Biennial Cancer Survivorship Research Conference; June 14–16, 2012; Arlington, VA, USA.
   Google Scholar
• Park EB, Emmons KM, Malloy NW, Seifer E. A qualitative exploration of health perceptions and behaviors among adult survivors of childhood cancers. J Cancer Educ. 2002;17(4):211–215.
   Web of Science ®Google Scholar
• Carlson LE, Speca M, Patel KD, Goodey E. Mindfulness-based stress reduction in relation to quality of life, mood, symptoms of stress and levels of cortisol, dehydroepiandrosterone sulfate (DHEAS) and melatonin in breast and prostate cancer outpatients. Psychoneuroendocrinology. 2004;29(4):448–474.
   PubMed Web of Science ®Google Scholar
• Cunningham AJ, Phillips C, Lockwood GA, Hedley DW, Edmonds CV Association of involvement in psychological self-regulation with longer survival in patients with metastatic cancer: an exploratory study. Adv Mind Body Med. 2000;16(4):276–287.
   Google Scholar
• Cunningham AJ, Phillips C, Stephen J, et al. Fighting for life: a qualitative analysis of the process of psychotherapy-assisted self-help in patients with metastatic cancer. Integr Cancer Ther. 2002;1(2):146–161.
   PubMedGoogle Scholar
• Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10(1):19–28.
   PubMed Web of Science ®Google Scholar
• Bultz BD, Carlson LE. Emotional distress: the sixth vital sign in cancer care. J Clin Oncol. 2005;23(26):6440–6441.
   PubMed Web of Science ®Google Scholar
• Carlson LE, Bultz BD. Cancer distress screening. Needs, models, and methods. J Psychosom Res. 2003;55(5):403–409.
   PubMed Web of Science ®Google Scholar
• Thompson K, Palmer S, Dyson G. Adolescents and young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–212.
   Web of Science ®Google Scholar
• Zebrack B, Mathews-Bradshaw B, Siegel S. Quality cancer care for adolescents and young adults: a position statement. J Clin Oncol. 2010;28(32):4862–4867.
   PubMed Web of Science ®Google Scholar
• Boehmer S, Luszczynska A. Two kinds of items in quality of life instruments: ‘indicator and causal variables’ in the EORTC qlq-c30. Qual Life Res. 2006;15(1):131–141.
   Web of Science ®Google Scholar
• Soliman H, Agresta SV Current issues in adolescent and young adult cancer survivorship. Cancer Control. 2008;15(1):55–62.
   PubMedGoogle Scholar
• Smith AB, Selby PJ, Velikova G, et al. Factor analysis of the Hospital Anxiety and Depression Scale from a large cancer population. Psychology and Psychotherapy: Theory, Research and Practice. 2002;75:165–176.
   PubMed Web of Science ®Google Scholar
• Lovibond PF, Lovibond SH. The structure of negative emotional states: comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther. 1995;33(3):335–343.
   PubMed Web of Science ®Google Scholar
• Andrews G, Slade T. Interpreting scores on the Kessler Psychological Distress Scale (K10). Aust N Z J Public Health. 2001;25(6):494–497.
   PubMed Web of Science ®Google Scholar
• Greco LA, Baer RA, Smith GT. Assessing mindfulness in children and adolescents: development and validation of the Child and Adolescent Mindfulness Measure (CAMM). Psychol Assess. 2011;23(3):606–614.
   PubMed Web of Science ®Google Scholar
• Greco LA, Lambert W, Baer RA. Psychological inflexibility in childhood and adolescence: development and evaluation of the Avoidance and Fusion Questionnaire for Youth. Psychol Assess. 2008;20(2):93–102.
   PubMed Web of Science ®Google Scholar
• Leavitt M, Martinson IM, Liu CY, et al. Common themes and ethnic differences in family caregiving the first year after diagnosis of childhood cancer: part II. J Pediatr Nurs. 1999;14(2):110–122.
   PubMedGoogle Scholar
• Ramirez AJ, Bogdanovic MR, Jasovic GM. Psychosocial adjustment to cancer: cultural considerations. The European Journal of Psychiatry. 1991;5:9–18.
   Web of Science ®Google Scholar
• Giuliano AR, Mokuau N, Hughes C, et al. Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors. Ann Epidemiol. 2000;10(8):S22–S34.
   PubMed Web of Science ®Google Scholar
• Abbott J, Baumann U, Conway S, et al. Cross cultural differences in health related quality of life in adolescents with cystic fibrosis. Disabil Rehabil. 2001;23(18):837–844.
   Web of Science ®Google Scholar
• Klopovich PM, Clancy BJ. Sexuality and the adolescent with cancer. Semin Oncol Nurs. 1985;1(1):42–48.
   Google Scholar
• Mattsson E, Ringnèr A, Ljungman G, von Essen L. Positive and negative consequences with regard to cancer during adolescence. Experiences two years after diagnosis. Psychooncology. 2007;16(11):1003–1009.
   Web of Science ®Google Scholar