Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study.
BACKGROUND
Hearing loss is a potential late effect after childhood cancer. Questionnaires are often used to assess hearing in large cohorts of childhood cancer survivors and it is important to know if they can provide valid measures of hearing loss. We therefore assessed agreement and validity of questionnaire-reported hearing in childhood cancer survivors using medical records as reference.


METHODS
In this validation study, we studied 361 survivors of childhood cancer from the Swiss Childhood Cancer Survivor Study (SCCSS) who had been diagnosed after 1989 and had been exposed to ototoxic cancer treatment. Questionnaire-reported hearing was compared to the information in medical records. Hearing loss was defined as ≥ grade 1 according to the SIOP Boston Ototoxicity Scale. We assessed agreement and validity of questionnaire-reported hearing overall and stratified by questionnaire respondents (survivor or parent), sociodemographic characteristics, time between follow-up and questionnaire and severity of hearing loss.


RESULTS
Questionnaire reports agreed with medical records in 85% of respondents (kappa 0.62), normal hearing was correctly assessed in 92% of those with normal hearing (n = 249), and hearing loss was correctly assessed in 69% of those with hearing loss (n = 112). Sensitivity of the questionnaires was 92%, 74%, and 39% for assessment of severe, moderate and mild bilateral hearing loss; and 50%, 33% and 10% for severe, moderate and mild unilateral hearing loss, respectively. Results did not differ by sociodemographic characteristics of the respondents, and survivor- and parent-reports were equally valid.


CONCLUSIONS
Questionnaires are a useful tool to assess hearing in large cohorts of childhood cancer survivors, but underestimate mild and unilateral hearing loss. Further research should investigate whether the addition of questions with higher sensitivity for mild degrees of hearing loss could improve the results.
Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Annette
http://orcid.org/0000-0001-8295-3574
A
Weiss
Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Grit
G
Sommer
Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
Rahel
R
Kuonen
Division of Pediatric Hematology/ Oncology, University Children`s Hospital Basel, Basel, Switzerland.
Katrin
K
Scheinemann
Department of Pediatric Oncology, University Children`s Hospital Zurich, University of Zurich, Zurich, Switzerland.
Michael
M
Grotzer
Department of ENT, Head and Neck Surgery, University Hospital Bern, University of Bern, Bern, Switzerland.
Martin
M
Kompis
Swiss Childhood Cancer Registry, Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.|Children's University Hospital of Bern, University of Bern, Bern, Switzerland.
Claudia E
CE
Kuehni
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D034381:Hearing Loss / Q000139:chemically induced* / Q000175:diagnosis*; D006320:Hearing Tests; D006801:Humans; D008297:Male; D008499:Medical Records; D009369:Neoplasms / Q000628:therapy*; D057566:Self Report; D012680:Sensitivity and Specificity; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D017741:Survivors; D055815:Young Adult