Limited evidence of non-response bias despite modest response rate in a nationwide survey of long-term cancer survivors-results from the NOR-CAYACS study

Hanne C Lie; Corina S Rueegg; Sophie D Fosså; Jon H Loge; Ellen Ruud; Cecilie E Kiserud

doi:10.1007/s11764-019-00757-x

Limited evidence of non-response bias despite modest response rate in a nationwide survey of long-term cancer survivors-results from the NOR-CAYACS study

J Cancer Surviv. 2019 Jun;13(3):353-363. doi: 10.1007/s11764-019-00757-x. Epub 2019 Apr 16.

Authors

Hanne C Lie^{1

2

3}, Corina S Rueegg⁴, Sophie D Fosså⁵, Jon H Loge^{6

7}, Ellen Ruud^{8

9}, Cecilie E Kiserud⁵

Affiliations

¹ Department of Paediatric Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway. h.c.lie@medisin.uio.no.
² Department of Behavioural Sciences in Medicine, Institute of Basic Medical Sciences in Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway. h.c.lie@medisin.uio.no.
³ National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, PO 4953, Nydalen, NO-0424, Oslo, Norway. h.c.lie@medisin.uio.no.
⁴ Oslo Centre for Biostatistics and Epidemiology, Oslo University Hospital and Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway.
⁵ National Advisory Unit on Late Effects after Cancer Treatment, Oslo University Hospital, Radiumhospitalet, PO 4953, Nydalen, NO-0424, Oslo, Norway.
⁶ Department of Behavioural Sciences in Medicine, Institute of Basic Medical Sciences in Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
⁷ Regional Advisory Unit in Palliative Care, Department of Oncology, Oslo University Hospital, Oslo, Norway.
⁸ Department of Paediatric Medicine, Oslo University Hospital, Rikshospitalet, Oslo, Norway.
⁹ Institute of Clinical Medicine, University of Oslo, Oslo, Norway.

PMID: 30993649
DOI: 10.1007/s11764-019-00757-x

Abstract

Purpose: Declining response rates threaten the generalizability of health surveys. We investigate (1) the effect of item order on response rate; (2) characteristics of early , late and non-responders; and (3) potential non-response bias in a population-based health survey of childhood, adolescent and young adult cancer survivors (CAYACS).

Methods: We mailed a questionnaire survey to 5361 eligible CAYACS identified by the Cancer Registry of Norway (CRN), representing a range of cancer diagnoses. The 302-item questionnaire included a range of survivorship-related questions and validated patient-reported outcome measures. To investigate item-order effects on response rates, we constructed two versions of the questionnaire presenting cancer-related or socio-demographic items first. The CRN provided demographic and clinical information for the total population. Risk of non-response bias was estimated by (1) comparing outcomes between early and late responders (answered after a reminder), and (2) by applying inverse probability of participation weights to construct a total population (with 100% response) and then compare 21 a priori selected outcomes between early responders, all responders (early + late) and the total population (all eligible).

Results: Survey item order did not affect response rates (cancer first 49.8% vs socio-demographic first 50.2%). Shorter time since diagnosis, male gender and a malignant melanoma diagnosis remained significant predictors of non-response in a multivariable multinomial regression model. There were no significant differences on 16/21 survey outcomes between early and late responders, and 18/21 survey outcomes between early responders, all responders and the total population.

Conclusion: Despite a modest response rate, we found little evidence for a response bias in our study.

Implications for cancer survivors: Surveys of survivor-reported outcomes with low response rates may still be valuable and generalizable to the total survivor population.

Keywords: Childhood cancer survivors; Health survey; Non-response bias; Response rate.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Aged
Bias
Cancer Survivors / psychology*
Female
Humans
Male
Middle Aged
Neoplasms / mortality*
Norway / epidemiology
Patient Reported Outcome Measures*
Registries
Surveys and Questionnaires
Young Adult