The University of Southampton
University of Southampton Institutional Repository

A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes

A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes
A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes
The aim of the study was to compare psychosocial outcomes for 50 new clinic attendees, referred for cancer genetic counselling to five UK centres. The centres represented England, Scotland and Wales, and were randomly selected from groups ranked by different levels of clinical activity in cancer genetics practice. Questionnaires assessed demographic data, risk perception, mental health and use of health services pre-consultation and at 1 and 12 months follow-up. Satisfaction was measured for attendees and referring doctors at follow-up. A total of 256 unaffected adults fulfilled the study criteria. The five centres varied widely with respect to service organisation and activity, but all had a greater proportion of unaffected attendees with a breast cancer risk (61-91%) than either a bowel cancer risk (0-33%) or ovarian cancer risk (3-25%). There were no significant differences in the psychosocial data between centres pre-counselling. No significant change over time occurred for any of the centres for risk perception or general psychological distress. There were significant differences between centres in reduction of cancer worry from baseline to 12 months and with the number of women who were recommended to have mammographic surveillance who had not received this. Overall, one-third of women for whom mammography had been recommended had not been screened within 1 year of follow-up. Subsequent attendance at the GP, but not at a hospital, was associated with risk level, but differences between centres could not be analysed. Satisfaction differed significantly between centres for 4 : 14 aspects of service provision and with 3 : 17 items concerning communication; satisfaction was high overall. Over 90% of referring doctors were moderately/very satisfied with the service, but 23% were dissatisfied with waiting times and 19% with access to preventive treatment. Results differed significantly between centres for doctor's satisfaction with the provision of referral criteria and prescribing information. In conclusion, there were relatively few significant differences in psychosocial outcomes between centres, considering the wide variation in service organisation and activity. These significant differences were not consistent across the centres, therefore, differences could not be linked to specific aspects of service provision.
breast cancer family history, risk counselling, psychological distress, satisfaction
0007-0920
884-892
Hopwood, P.
aed6184b-149a-4459-b68e-87a9e22241f0
Wonderling, D.
34bbce3b-a8dc-4732-a363-8f03ca54f9a8
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa
Cull, A.
2ff5c459-96ff-49c6-9ae0-3c85c292be4a
Douglas, F.
9dc3db90-827e-419d-86f1-48e22b6845ab
Cole, T.
5330af8b-76ec-4957-87b2-3aa3580a74c0
Eccles, D.
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Gray, J.
b0346c64-2be9-40be-a5cc-7de6af3d5d41
Murday, V.
0470cfd9-cb74-4f32-96be-ed0f5620c896
Steel, M.
33f64eae-77ca-49fe-98d3-6f8524129b84
Burn, J.
8b4d729f-6058-4227-b64e-d630764e861e
McPherson, K.
7c48feb0-824c-46f5-9d7f-78e43cdfcdf9
Hopwood, P.
aed6184b-149a-4459-b68e-87a9e22241f0
Wonderling, D.
34bbce3b-a8dc-4732-a363-8f03ca54f9a8
Watson, M.
168c5230-279a-4c51-9065-eefcd18191fa
Cull, A.
2ff5c459-96ff-49c6-9ae0-3c85c292be4a
Douglas, F.
9dc3db90-827e-419d-86f1-48e22b6845ab
Cole, T.
5330af8b-76ec-4957-87b2-3aa3580a74c0
Eccles, D.
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Gray, J.
b0346c64-2be9-40be-a5cc-7de6af3d5d41
Murday, V.
0470cfd9-cb74-4f32-96be-ed0f5620c896
Steel, M.
33f64eae-77ca-49fe-98d3-6f8524129b84
Burn, J.
8b4d729f-6058-4227-b64e-d630764e861e
McPherson, K.
7c48feb0-824c-46f5-9d7f-78e43cdfcdf9

Hopwood, P., Wonderling, D., Watson, M., Cull, A., Douglas, F., Cole, T., Eccles, D., Gray, J., Murday, V., Steel, M., Burn, J. and McPherson, K. (2004) A randomised comparison of UK genetic risk counselling services for familial cancer: psychosocial outcomes. British Journal of Cancer, 91 (5), 884-892. (doi:10.1038/sj.bjc.6602081).

Record type: Article

Abstract

The aim of the study was to compare psychosocial outcomes for 50 new clinic attendees, referred for cancer genetic counselling to five UK centres. The centres represented England, Scotland and Wales, and were randomly selected from groups ranked by different levels of clinical activity in cancer genetics practice. Questionnaires assessed demographic data, risk perception, mental health and use of health services pre-consultation and at 1 and 12 months follow-up. Satisfaction was measured for attendees and referring doctors at follow-up. A total of 256 unaffected adults fulfilled the study criteria. The five centres varied widely with respect to service organisation and activity, but all had a greater proportion of unaffected attendees with a breast cancer risk (61-91%) than either a bowel cancer risk (0-33%) or ovarian cancer risk (3-25%). There were no significant differences in the psychosocial data between centres pre-counselling. No significant change over time occurred for any of the centres for risk perception or general psychological distress. There were significant differences between centres in reduction of cancer worry from baseline to 12 months and with the number of women who were recommended to have mammographic surveillance who had not received this. Overall, one-third of women for whom mammography had been recommended had not been screened within 1 year of follow-up. Subsequent attendance at the GP, but not at a hospital, was associated with risk level, but differences between centres could not be analysed. Satisfaction differed significantly between centres for 4 : 14 aspects of service provision and with 3 : 17 items concerning communication; satisfaction was high overall. Over 90% of referring doctors were moderately/very satisfied with the service, but 23% were dissatisfied with waiting times and 19% with access to preventive treatment. Results differed significantly between centres for doctor's satisfaction with the provision of referral criteria and prescribing information. In conclusion, there were relatively few significant differences in psychosocial outcomes between centres, considering the wide variation in service organisation and activity. These significant differences were not consistent across the centres, therefore, differences could not be linked to specific aspects of service provision.

This record has no associated files available for download.

More information

Submitted date: 28 April 2003
Published date: 10 August 2004
Keywords: breast cancer family history, risk counselling, psychological distress, satisfaction

Identifiers

Local EPrints ID: 26388
URI: http://eprints.soton.ac.uk/id/eprint/26388
ISSN: 0007-0920
PURE UUID: e5b1e6bb-01a8-4379-8b89-86344422e59c
ORCID for D. Eccles: ORCID iD orcid.org/0000-0002-9935-3169

Catalogue record

Date deposited: 20 Apr 2006
Last modified: 16 Mar 2024 02:39

Export record

Altmetrics

Contributors

Author: P. Hopwood
Author: D. Wonderling
Author: M. Watson
Author: A. Cull
Author: F. Douglas
Author: T. Cole
Author: D. Eccles ORCID iD
Author: J. Gray
Author: V. Murday
Author: M. Steel
Author: J. Burn
Author: K. McPherson

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×