TY - JOUR
T1 - Do we reach the patients with the most problems? Baseline data from the WebCan study among survivors of head-and-neck cancer, Denmark
AU - Kjaer, Trille
AU - Johansen, Christoffer
AU - Andersen, Elo
AU - Karlsen, Randi
AU - Nielsen, Anni Linnet
AU - Frederiksen, Kirsten
AU - Rørth, Mikael
AU - Dalton, Susanne Oksbjerg
PY - 2016/4/1
Y1 - 2016/4/1
N2 - 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.
AB - 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.
KW - Cancer survivorship
KW - Head-and-neck cancer
KW - Intervention study
KW - Late effect
KW - Non-participant
KW - Patient-reported outcome
UR - http://www.scopus.com/inward/record.url?scp=84938539642&partnerID=8YFLogxK
U2 - 10.1007/s11764-015-0471-x
DO - 10.1007/s11764-015-0471-x
M3 - Article
C2 - 26227655
AN - SCOPUS:84938539642
SN - 1932-2259
VL - 10
SP - 251
EP - 260
JO - Journal of Cancer Survivorship
JF - Journal of Cancer Survivorship
IS - 2
ER -