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Tytuł pozycji:

Use of a cancer registry is preferable to a direct-to-community approach for recruitment to a cohort study of wellbeing in women newly diagnosed with invasive breast cancer

Tytuł :
Use of a cancer registry is preferable to a direct-to-community approach for recruitment to a cohort study of wellbeing in women newly diagnosed with invasive breast cancer
Autorzy :
Farrugia Helen
La China Maria
Fradkin Pam
Davis Susan R
Lijovic Marijana
Wolfe Rory
Bell Robin J
Pokaż więcej
Temat :
Neoplasms. Tumors. Oncology. Including cancer and carcinogens
RC254-282
Źródło :
BMC Cancer, Vol 8, Iss 1, p 126 (2008)
Wydawca :
BMC, 2008.
Rok publikacji :
2008
Kolekcja :
LCC:Neoplasms. Tumors. Oncology. Including cancer and carcinogens
Typ dokumentu :
article
Opis pliku :
electronic resource
Język :
English
ISSN :
1471-2407
Relacje :
http://www.biomedcentral.com/1471-2407/8/126; https://doaj.org/toc/1471-2407
DOI :
10.1186/1471-2407-8-126
Dostęp URL :
https://doaj.org/article/4eceedc380b947289d16a1e63d460abc
Prawa :
Journal Licence: CC BY
Numer akcesji :
edsdoj.4eceedc380b947289d16a1e63d460abc
Czasopismo naukowe
Abstract Background Breast cancer (BC) mortality is declining such that the number of survivors of BC in the community is increasing. BC survivors report a range of sequelae from their cancer and its management beyond the period of their immediate treatment. Previous studies to document these have generally been small, clinic-based or commenced years after diagnosis. We have recruited a large cohort of women newly diagnosed with invasive BC from the community who will be followed for five years in order to systematically document the physical, psychological and socio-economic consequences of BC and its treatment. The aim of this manuscript is to describe the issues encountered in the recruitment of this community-based study population. Methods Women residing in the southern Australian state of Victoria newly diagnosed with invasive BC were recruited to this cohort study using two approaches: directly from the community using an advertising campaign and contemporaneously using an invitation to participate from the Victorian Cancer Registry (VCR). Results Over the two and half year recruitment period, 2135 women were recruited and agreed to receive the enrollment questionnaire (EQ). Of these, 1684 women were eligible and completed an EQ, with the majority of participants having been recruited through the VCR (n = 1321). Only 16% of women contacted by the VCR actively refused participation following a letter of invitation and phone follow-up. The age distribution and tumour characteristics of participants are consistent with state-wide data and their residential postcodes include 400 of a possible 699. Recruitment through a direct community awareness program aimed at women with newly diagnosed invasive BC was difficult, labour-intensive and expensive. Barriers to the recruitment process were identified. Conclusion Most of the women in this study were recruited through a state-based cancer registry. Limitations to recruitment occurred because we required questionnaires to be completed within 12 months of diagnosis in a setting where there is several months delay in notification of new cases to the Registry. Characteristics of the cohort suggest that it is generally representative of women in the state of Victoria newly diagnosed with BC.

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