Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study

Annette Weiss, Grit Sommer, Rahel Kuonen, Katrin Scheinemann, Michael Grotzer, Martin Kompis, Claudia E Kuehni, Swiss Paediatric Oncology Group (SPOG), Annette Weiss, Grit Sommer, Rahel Kuonen, Katrin Scheinemann, Michael Grotzer, Martin Kompis, Claudia E Kuehni, Swiss Paediatric Oncology Group (SPOG)

Abstract

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.

Procedure: 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.

Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

Figures

Fig 1. Flow chart of study population.
Fig 1. Flow chart of study population.
Abbreviations: SPOG, Swiss Pediatric Oncology Group; SCCSS, Swiss Childhood Cancer Survivor Study.aSPOG clinics including the following clinics with paediatric oncology units: Kantonsspital Aarau AG, Universitäts-Kinderspital Basel, Ospedale S. Giovanni Bellinzona, Universitäts-Kinderklinik Bern, Hospital des Enfants Geneve, CHUV Lausanne, Kantonsspital Luzern, Ostschweizer Kinderspital St. Gallen, Universitäts-Kinderspital Zürich. bIncludes survivors who have received platinum compounds or cranial radiation.cIncludes survivors who have not received platinum compounds or cranial radiation.
Fig 2. Flow chart on data collection…
Fig 2. Flow chart on data collection via medical records.
Abbreviations: SIOP, International Society of Pediatric Oncology; ENT, Ear-nose-throat. aWe collected information from medical records of the paediatric oncological departments and ENT departments. bWhen we found more than one report or hearing test with differing results, we used the most recent report/test.

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