Skip to main content
Log in

Instruments to measure anxiety in children, adolescents, and young adults with cancer: a systematic review

  • Review Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

The primary objective was to describe anxiety measurement instruments used in children and adolescents with cancer or undergoing hematopoietic stem cell transplantation (HSCT) and summarize their content and psychometric properties.

Methods

We conducted searches of MEDLINE, Embase, PsycINFO, HAPI, and CINAHL. We included studies that used at least one instrument to measure anxiety quantitatively in children or adolescents with cancer or undergoing HSCT. Two authors independently identified studies and abstracted study demographics and instrument characteristics.

Results

Twenty-seven instruments, 14 multi-item and 13 single-item, were used between 78 studies. The most commonly used instrument was the State-Trait Anxiety Inventory in 46 studies. Three multi-item instruments (Children’s Manifest Anxiety Scale—Mandarin version, PROMIS Pediatric Anxiety Short Form, and the State-Trait Anxiety Inventory) and two single-item instruments (Faces Pain Scale-Revised and 10-cm Visual Analogue Scale, both adapted for anxiety) were found to be reliable and valid in children with cancer.

Conclusions

We identified 14 different multi-item and 13 different single-item anxiety measurement instruments that have been used in pediatric cancer or HSCT. Only three multi-item and two single-item instruments were identified as being reliable and valid among pediatric cancer or HSCT patients and would therefore be appropriate to measure anxiety in this population.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References

  1. Canadian Cancer Society’s Steering Committee on Cancer Statistics (2015) Canadian Cancer Statistics 2015. In: Editor (ed)^(eds) Book Canadian Cancer Statistics 2015. Canadian Cancer Society, City

  2. Phipps S, Buckholdt KE, Fernandez L, Wiener L, Kupst MJ, Madan-Swain A, Mullins L, Robert R, Sahler OJ, Vincent N, Noll RB (2012) Pediatric oncologists’ practices of prescribing selective serotonin reuptake inhibitors (SSRIs) for children and adolescents with cancer: a multi-site study. Pediatr Blood Cancer 58:210–215

    Article  PubMed  Google Scholar 

  3. Noll RB, Patel SK, Embry L, Hardy KK, Pelletier W, Annett RD, Patenaude A, Lown EA, Sands SA, Barakat LP, Committee COGBS (2013) Children’s Oncology Group’s 2013 blueprint for research: behavioral science. Pediatr Blood Cancer 60:1048–1054

    Article  PubMed  Google Scholar 

  4. Pai AL, Greenley RN, Lewandowski A, Drotar D, Youngstrom E, Peterson CC (2007) A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol 21:407–415

    Article  PubMed  Google Scholar 

  5. Lauer AL (2015) Treatment of anxiety and depression in adolescents and young adults with cancer. J Pediatr Oncol Nurs

    Google Scholar 

  6. Woodgate RL, Degner LF, Yanofsky R (2003) A different perspective to approaching cancer symptoms in children. J Pain Symptom Manag 26:800–817

    Article  Google Scholar 

  7. Kazak AE, Simms S, Rourke MT (2002) Family systems practice in pediatric psychology. J Pediatr Psychol 27:133–143

    Article  PubMed  Google Scholar 

  8. Kaziunas E, Hanauer DA, Ackerman MS, Choi SW (2016) Identifying unmet informational needs in the inpatient setting to increase patient and caregiver engagement in the context of pediatric hematopoietic stem cell transplantation. J Am Med Inform Assoc 23:94–104

    Article  PubMed  Google Scholar 

  9. Packman W, Weber S, Wallace J, Bugescu N (2010) Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant 45:1134–1146

    Article  CAS  PubMed  Google Scholar 

  10. Meyers CA, Weitzner M, Byrne K, Valentine A, Champlin RE, Przepiorka D (1994) Evaluation of the neurobehavioral functioning of patients before, during, and after bone marrow transplantation. J Clin Oncol 12:820–826

    Article  CAS  PubMed  Google Scholar 

  11. Pot-Mees C (1989) The psychological effects of bone marrow transplantation in children. Eburon Delft, Delft

    Google Scholar 

  12. Wu LM, Sheen JM, Shu HL, Chang SC, Hsiao CC (2013) Predictors of anxiety and resilience in adolescents undergoing cancer treatment. J Adv Nurs 69:158–166

    Article  PubMed  Google Scholar 

  13. Gianinazzi ME, Rueegg CS, Wengenroth L, Bergstraesser E, Rischewski J, Ammann RA, Kuehni CE, Michel G, for Swiss Pediatric Oncology G (2013) Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology 22:2051–2058

    Article  PubMed  Google Scholar 

  14. Firoozi M, Besharat MA, Rahimian Boogar E (2013) Emotional regulation and adjustment to childhood cancer: role of the biological, psychological and social regulators on pediatric oncology adjustment. Iran J Cancer Prev 6:65–72

    PubMed  PubMed Central  Google Scholar 

  15. Myers RM, Balsamo L, Lu X, Devidas M, Hunger SP, Carroll WL, Winick NJ, Maloney KW, Kadan-Lottick NS (2014) A prospective study of anxiety, depression, and behavioral changes in the first year after a diagnosis of childhood acute lymphoblastic leukemia: a report from the Children’s Oncology Group. Cancer 120:1417–1425

    Article  PubMed  PubMed Central  Google Scholar 

  16. National Institutes of Health (2015) NCI dictionary of cancer terms, “anxiety”. In: Editor (ed)^(eds) Book NCI dictionary of cancer terms, “anxiety”, City

  17. Kazak AE, Brier M, Alderfer MA, Reilly A, Fooks Parker S, Rogerwick S, Ditaranto S, Barakat LP (2012) Screening for psychosocial risk in pediatric cancer. Pediatr Blood Cancer 59:822–827

    Article  PubMed  PubMed Central  Google Scholar 

  18. Stark D, Kiely M, Smith A, Velikova G, House A, Selby P (2002) Anxiety disorders in cancer patients: their nature, associations, and relation to quality of life. J Clin Oncol 20:3137–3148

    Article  CAS  PubMed  Google Scholar 

  19. Mavrides N, Pao M (2014) Updates in paediatric psycho-oncology. Int Rev Psychiatry 26:63–73

    Article  PubMed  PubMed Central  Google Scholar 

  20. Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW (2004) Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101:2116–2125

    Article  PubMed  Google Scholar 

  21. Varni JW, Katz ER, Colegrove R Jr, Dolgin M (1995) Adjustment of children with newly diagnosed cancer: cross-informant variance. J Psychosoc Oncol 13:23–38

    Article  Google Scholar 

  22. Andersen BL, DeRubeis RJ, Berman BS, Gruman J, Champion VL, Massie MJ, Holland JC, Partridge AH, Bak K, Somerfield MR, Rowland JH, American Society of Clinical O (2014) Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol 32:1605–1619

    Article  PubMed  PubMed Central  Google Scholar 

  23. Redeker NS, Lev EL, Ruggiero J (2000) Insomnia, fatigue, anxiety, depression, and quality of life of cancer patients undergoing chemotherapy. Sch Inq Nurs Pract 14:275–290 discussion 291-278

    CAS  PubMed  Google Scholar 

  24. Dunn LB, Aouizerat BE, Cooper BA, Dodd M, Lee K, West C, Paul SM, Wara W, Swift P, Miaskowski C (2012) Trajectories of anxiety in oncology patients and family caregivers during and after radiation therapy. Eur J Oncol Nurs 16:1–9

    Article  PubMed  Google Scholar 

  25. Mitchell AJ, Chan M, Bhatti H, Halton M, Grassi L, Johansen C, Meader N (2011) Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: a meta-analysis of 94 interview-based studies. Lancet Oncol 12:160–174

    Article  PubMed  Google Scholar 

  26. Howell D, Keller-Olaman S, Oliver T, Hack T, Broadfield L, Biggs K, Chung J, Esplen M-J, Gravelle D, Green E, Gerin-Lajoie C, Hamel M, Harth T, Johnston P, Swinton N, Syme A (2010) A Pan-Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress (Depression, Anxiety) in Adults with Cancer. Canadian Partnership Against Cancer (Cancer Journey Action Group) and the Canadian Association of Psychosocial Oncology, Toronto

  27. Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ (2015) Standards for the psychosocial care of children with cancer and their Families: an introduction to the special issue. Pediatr Blood Cancer 62(Suppl 5):S419–S424

    Article  PubMed  Google Scholar 

  28. Wyrwich KW, Bullinger M, Aaronson N, Hays RD, Patrick DL, Symonds T, Clinical Significance Consensus Meeting G (2005) Estimating clinically significant differences in quality of life outcomes. Qual Life Res 14:285–295

    Article  PubMed  Google Scholar 

  29. Yost KJ, Eton DT, Garcia SF, Cella D (2011) Minimally important differences were estimated for six Patient-Reported Outcomes Measurement Information System-cancer scales in advanced-stage cancer patients. J Clin Epidemiol 64:507–516

    Article  PubMed  PubMed Central  Google Scholar 

  30. Ginty AT (2013) Psychometric properties. In: Gellman MD, Turner JR (eds) Encyclopedia of behavioural medicine. Springer, New York, pp 1563–1564

    Chapter  Google Scholar 

  31. Furr RM, Bacharach VR (2013) Psychometrics and the importance of psychological measurement. SAGE Publications, New York

    Google Scholar 

  32. Sullivan GM (2011) A primer on the validity of assessment instruments. J Grad Med Educ 3:119–120

    Article  PubMed  PubMed Central  Google Scholar 

  33. Moher D, Liberati A, Tetzlaff J, Altman DG, Group P (2010) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg 8:336–341

    Article  PubMed  Google Scholar 

  34. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174

    Article  CAS  PubMed  Google Scholar 

  35. Hayden JA, Cote P, Bombardier C (2006) Evaluation of the quality of prognosis studies in systematic reviews. Ann Intern Med 144:427–437

    Article  PubMed  Google Scholar 

  36. Mokkink LB, Terwee CB, Gibbons E, Stratford PW, Alonso J, Patrick DL, Knol DL, Bouter LM, de Vet HC (2010) Inter-rater agreement and reliability of the COSMIN (COnsensus-based Standards for the selection of health status Measurement Instruments) checklist. BMC Med Res Methodol 10:82

    Article  PubMed  PubMed Central  Google Scholar 

  37. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, Bouter LM, de Vet HC (2010) The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol 63:737–745

    Article  PubMed  Google Scholar 

  38. Terwee CB, Mokkink LB, Knol DL, Ostelo RW, Bouter LM, de Vet HC (2012) Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res 21:651–657

    Article  PubMed  Google Scholar 

  39. Kersun LS, Rourke MT, Mickley M, Kazak AE (2009) Screening for depression and anxiety in adolescent cancer patients. J Pediatr Hematol Oncol 31:835–839

    Article  PubMed  Google Scholar 

  40. Broome ME, Lillis PP, McGahee TW, Bates T (1992) The use of distraction and imagery with children during painful procedures. Oncol Nurs Forum 19:499–502

    CAS  PubMed  Google Scholar 

  41. Wu LM, Chin CC, Chen CH, Lai FC, Tseng YY (2011) Development and validation of the paediatric cancer coping scale. J Adv Nurs 67:1142–1151

    Article  PubMed  Google Scholar 

  42. Wu LM, Liu Y, Chen HM, Tseng HC, Lin WT (2016) Psychometric properties of the RCMAS-2 in pediatric cancer patients. Eur J Oncol Nurs 20:36–41

    Article  PubMed  Google Scholar 

  43. Liu Y, Wang J, Hinds PS, Wang J, Shen N, Zhao X, Ding J, Yuan C (2015) The emotional distress of children with cancer in China: an item response analysis of C-Ped-PROMIS anxiety and depression short forms. Qual Life Res Int J Qual Life Asp Treat Care Rehab 24:1491–1501

    Article  Google Scholar 

  44. DeWalt DA, Gross HE, Gipson DS, Selewski DT, DeWitt EM, Dampier CD, Hinds PS, Huang IC, Thissen D, Varni JW (2015) PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Qual Life Res 24:2195–2208

    Article  PubMed  PubMed Central  Google Scholar 

  45. Ameringer S, Elswick RK Jr, Shockey DP, Dillon R (2013) A pilot exploration of symptom trajectories in adolescents with cancer during chemotherapy. Cancer Nurs 36:60–71

    Article  PubMed  PubMed Central  Google Scholar 

  46. Hancock M, Phipps S (2006) Assessing adaptive style in children: concordance of different classification approaches. Personal Individ Differ 41:885–896

    Article  Google Scholar 

  47. Germann JN, Leonard D, Stuenzi TJ, Pop RB, Stewart SM, Leavey PJ (2015) Hoping is coping: a guiding theoretical framework for promoting coping and adjustment following pediatric cancer diagnosis. J Pediatr Psychol 40:846–855

    Article  PubMed  Google Scholar 

  48. Hockenberry-Eaton M, Dilorio C, Kemp V (1995) The relationship of illness longevity and relapse with self-perception, cancer stressors, anxiety, and coping strategies in children with cancer. J Pediatr Oncol Nurs 12:71–79

    Article  CAS  PubMed  Google Scholar 

  49. Hockenberry-Eaton M, Kemp V, DiIorio C (1994) Cancer stressors and protective factors: predictors of stress experienced during treatment for childhood cancer. Res Nurs Health 17:351–361

    Article  CAS  PubMed  Google Scholar 

  50. Phipps S, Srivastava DK (1997) Repressive adaptation in children with cancer. Health Psychol: Off J Div Health Psychol, Am Psychol Assoc 16:521–528

    Article  CAS  Google Scholar 

  51. Schneider SM, Workman M (1999) Effects of virtual reality on symptom distress in children receiving chemotherapy. CyberPsychol Behav 2:125–134

    Article  CAS  PubMed  Google Scholar 

  52. Sharan P, Mehta M, Chaudhry VP (1999) Psychiatric morbidity in children suffering from acute lymphoblastic leukemia. Pediatr Hematol Oncol 16:49–54

    Article  CAS  PubMed  Google Scholar 

  53. Jay SM, Ozolins M, Elliott CH, Caldwell S (1983) Assessment of children’s distress during painful medical procedures. Health Psychol 2:133–147

    Article  Google Scholar 

  54. Li HCW, Chung OKJ, Chiu SY (2010) The impact of cancer on children’s physical, emotional, and psychosocial well-being. Cancer Nurs 33:47–54

    Article  PubMed  Google Scholar 

  55. Dufresne A, Dugas M, Samson Y, Barr P, Turcot L, Marc I (2010) Do children undergoing cancer procedures under pharmacological sedation still report pain and anxiety? A preliminary study. Pain Med 11(215–223):219p

    Google Scholar 

  56. Zeltzer L, LeBaron S (1982) Hypnosis and nonhypnotic techniques for reduction of pain and anxiety during painful procedures in children and adolescents with cancer. J Pediatr 101:1032–1035

    Article  CAS  PubMed  Google Scholar 

  57. Velentgas P, Dreyer NA, Wu AW (2013) Chapter 6: outcome definition and measurement. In: Velentgas P, Dreyer NA, Nourjah P (eds) Developing a protocol for observational comparative effectiveness research: a user’s guide. Agency for Healthcare Research and Quality, Rockville

    Google Scholar 

  58. Firoozi M, Besharat MA, Farahani H, Ghaed Rahmat A (2011) “Vitality” a missing link in adjustment to childhood cancer. Iran J Cancer Prev 4:109–113

    CAS  PubMed  PubMed Central  Google Scholar 

  59. Penn A, Lowis SP, Hunt LP, Shortman RI, Stevens MC, McCarter RL, Curran AL, Sharples PM (2008) Health related quality of life in the first year after diagnosis in children with brain tumours compared with matched healthy controls; a prospective longitudinal study. Eur J Cancer 44:1243–1252

    Article  PubMed  Google Scholar 

  60. Vannatta K, Gerhardt CA, Wells RJ, Noll RB (2007) Intensity of CNS treatment for pediatric cancer: prediction of social outcomes in survivors. Pediatr Blood Cancer 49:716–722

    Article  PubMed  Google Scholar 

  61. Jurbergs N, Russell KM, Long A, Phipps S (2008) Adaptive style and differences in parent and child report of health-related quality of life in children with cancer. Psychooncology 17:83–90

    Article  PubMed  Google Scholar 

  62. Reeve BB, Teresi JA (2016) Overview to the two-part series: measurement equivalence of the Patient Reported Outcomes Measurement Information System® (PROMIS®) short forms. Psychol Test Assess Model 58:31–35

    Google Scholar 

  63. Reeve BB, Hays RD, Bjorner JB, Cook KF, Crane PK, Teresi JA, Thissen D, Revicki DA, Weiss DJ, Hambleton RK, Liu H, Gershon R, Reise SP, Lai JS, Cella D, Group PC (2007) Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Med Care 45:S22–S31

    Article  PubMed  Google Scholar 

  64. Spielberger CD (1973) State-Trait Anxiety Inventory for children. Consulting Psychology Press, New York

    Google Scholar 

  65. Barnes LL, Harp D, Jung WS (2002) Reliability generalization of scores on the Spielberger State-Trait Anxiety Inventory. Educ Psychol Meas 62:603–618

    Article  Google Scholar 

Download references

Acknowledgements

We would like to thank Cheri Nickel for her excellent support in assisting us with the database searches that were conducted for this study and Dr. Mark Dobrow for his critical review of the protocol for this research.

Author information

Authors and Affiliations

Authors

Contributions

All authors contributed to the study conception and design, TL and LT contributed to the acquisition of data, analysis, and interpretation of data, and all authors contributed to the manuscript writing and revisions and have approved the final version for publication.

Corresponding author

Correspondence to Tanya Lazor.

Ethics declarations

Conflict of interest

This research is unfunded. The first author (TL) has full control of all primary data and agrees to allow the journal to review the data if requested.

Electronic supplementary material

Appendix 1

(DOCX 24 kb).

Appendix 2

(DOCX 34 kb).

Appendix 3

(DOC 397 kb).

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Lazor, T., Tigelaar, L., Pole, J.D. et al. Instruments to measure anxiety in children, adolescents, and young adults with cancer: a systematic review. Support Care Cancer 25, 2921–2931 (2017). https://doi.org/10.1007/s00520-017-3743-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-017-3743-3

Keywords

Navigation