REVIEW ARTICLE Instruments to measure anxiety in children, adolescents, and young adults with cancer: a systematic review Tanya Lazor 1 & Leonie Tigelaar 1 & Jason D. Pole 2 & Claire De Souza 3 & Deborah Tomlinson 1 & Lillian Sung 1,4 Received: 25 October 2016 /Accepted: 4 May 2017 # Springer-Verlag Berlin Heidelberg 2017 Abstract Purpose The primary objective was to describe anxiety measurement instruments used in children and adoles- cents 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 instru- ment 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 instru- ments (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 dif- ferent 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 reli- able and valid among pediatric cancer or HSCT patients and would therefore be appropriate to measure anxiety in this population. Keywords Anxiety . Assessment . Cancer . Hematopoietic stem cell transplantation . Children . Patient-reported outcomes Introduction Childhood cancer 5-year survival rates currently surpass 83% [1]. As survival rates continue to improve, focus has expanded from disease outcomes to improved quality of life (QoL) and psychosocial well-being of pediatric oncology patients and hematopoietic stem cell transplant (HSCT) recipients. Despite improvements in the prognosis for children with can- cer, the negative psychosocial impact of a cancer diagnosis and treatment can be substantial [2, 3]. Stressors include changes in daily activities and family roles, coping with ad- verse side effects, disruption of developmental milestones, and the possibility of death [4–7]. Children who undergo HSCT face a symptom burden similar to that of children re- ceiving chemotherapy for cancer, including anxiety Electronic supplementary material The online version of this article (doi:10.1007/s00520-017-3743-3) contains supplementary material, which is available to authorized users. * Tanya Lazor tanya.lazor@sickkids.ca 1 Program in Child Health Evaluative Sciences, Peter Gilgan Centre for Research and Learning, The Hospital for Sick Children, 686 Bay Street, Toronto, ON M5G 0A4, Canada 2 Pediatric Oncology Group of Ontario, 480 University Avenue, Toronto, ON M5G 1V2, Canada 3 Department of Psychiatry, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada 4 Division of Haematology/Oncology, The Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G 1X8, Canada Support Care Cancer DOI 10.1007/s00520-017-3743-3