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Do we reach the patients with the most problems? Baseline data from the WebCan study among survivors of head-and-neck cancer, Denmark

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Abstract

Purpose

This study seeks to assess the differences in disease and socioeconomic characteristics, late effects and long-term quality of life (QoL) after head-and-neck cancer (HNC) among participants and non-participants.

Methods

Five hundred sixty recurrence-free survivors treated for HNC at least 6 months previously were invited to participate in a repeated measure, controlled intervention study of computerized Patient Reported Outcome (PRO), which is provided to treating physicians at the point of care. Two hundred sixty-six consented to participate, and 292 declined; of those who declined, 103 filled in the baseline questionnaire. Late effects and QoL were evaluated on the EORTC QLQ C-30 and EORTC QLQ H&N35 and HADS questionnaires, and an empirically derived symptom list was prepared with hospital clinicians.

Results

Participants were younger, had a higher educational level, were more likely to cohabit, less likely to smoke, used less alcohol and were more likely to have HPV than those who declined but did not differ by gender, cancer site, stage or time since diagnosis. Participants reported significantly better QoL and functioning and less severe symptoms than those who declined participation other than filling in the baseline questionnaire.

Conclusions

Late symptoms are common in HNC survivors. A wide diversity of self-reported late effects was found in this trial with participants significantly less affected than non-participants.

Implications for Cancer Survivors

Generalizable data on non-participation may aid in the interpretation of studies on HNC survivors in general and may have relevance for targeting recruitment and maintenance in rehabilitation and follow-up care, outside clinical trials.

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Research support

This study was supported by the Danish Cancer Society (number R17-A744), The Health Foundation (number 2010B043), and The Danish Agency for Science, Technology and Innovation (number 10-078272).

Conflict of interest

We declare that we have no conflict of interest.

Author information

Authors and Affiliations

  1. Survivorship, Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark

    Trille Kjaer, Christoffer Johansen, Randi Karlsen & Susanne Oksbjerg Dalton

  2. Department of Oncology, Rigshospitalet, Blegdamsvej 9, 2100, Copenhagen, Denmark

    Christoffer Johansen & Mikael Rørth

  3. Department of Oncology, Herlev Hospital, Herlev Ringvej 75, 2730, Herlev, Denmark

    Elo Andersen & Anni Linnet Nielsen

  4. Department of Statistics, Bioinformatics and Registry, Danish Cancer Society Research Center, Strandboulevarden 49, 2100, Copenhagen, Denmark

    Kirsten Frederiksen

Authors
  1. Trille Kjaer
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  2. Christoffer Johansen
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  3. Elo Andersen
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Correspondence to Trille Kjaer.

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Kjaer, T., Johansen, C., Andersen, E. et al. Do we reach the patients with the most problems? Baseline data from the WebCan study among survivors of head-and-neck cancer, Denmark. J Cancer Surviv 10, 251–260 (2016). https://doi.org/10.1007/s11764-015-0471-x

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  • DOI: https://doi.org/10.1007/s11764-015-0471-x

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