2008 Barcelona - European Society of Human Genetics

EMPAG Posters
to optimize counseling service . We necessitate to analyze psychosocial
features to fit counseling process to client personality and needs.
To reach this goal, since 2004 we have evaluated needs for information,
motivations and psychosocial characteristics of individuals asking
for OGC because of their familial history of common cancers (breast,
colon, thyroid, etc.). 110 counselees fulfilled a questionnaire before
receiving OGC assessing: sociodemographic features, health locus of
control, monitoring/blunting, general self efficacy, motivations, emotional
state and perceived risk . 76 were affected by cancer and 34
were unaffected . Cancer risk was assessed either with genetic testing
or with validated probabilistic models . Our results have showed that
counselees have: no clinical psychological distress, high level of self
efficacy but not a specific style of information seeking. They feel at high
risk for cancer running in the family and they strongly want information
about surveillance and prevention actions . Perceived risk is related to
some psychological variables (coping and mood) and in unaffected
people it is not related to cancer risk estimated . We can conclude that,
individual seeking OGC have adaptive psychological resources that let
them cope with familial cancer risk, and that evaluating psychological
profile has several implications into clinical practice, because psychological
variables significantly influence risk perception.
EP14.17
triangulation of methods: a novel approach to investigating
valued outcomes from using clinical genetics services
M. McAllister 1 , K. Payne 2 , R. MacLeod 3 , D. Donnai 1 , L. Davies 2 ;
1 Nowgen (A Centre for Genetics in Healthcare) & Medical Genetics Research
Group, The University of Manchester, St Mary’s Hospital, Manchester, United
Kingdom, 2 Nowgen (A Centre for Genetics in Healthcare) & Health Economics
Research at Manchester, School of Community-based Medicine, The University
of Manchester, Manchester, United Kingdom, 3 Medical Genetics Research
Group, The University of Manchester, St Mary’s Hospital, Manchester, United
Kingdom.
The patient benefits from using clinical genetics services are hard to
measure, and there is little consensus about appropriate outcome
measures . This paper describes a programme of research that aimed
to work towards a core set of outcome measures suitable for evaluating
clinical genetics services . The approach involved 4 types of triangulation
(method, investigator, discipline and data) . Three methods
were used:
(1) A systematic review of the literature identified the validated outcome
measures (30 genetics-specific and 37 generic) used, or developed,
to evaluate clinical genetics services .
(2) A Delphi survey, aimed at identifying the degree of consensus
about the relevance of existing outcome measures, was completed by
a panel of 115 genetics clinicians and 72 patients of clinical genetics
services . At least 75% of the panel agreed that the following outcome
domains were useful: knowledge of the genetic condition, decisionmaking,
perceived personal control, risk perception, satisfaction, meeting
of expectations, coping, accuracy of diagnosis and quality of life .
(3) Qualitative research (7 focus groups and 19 interviews) with patients
of clinical genetics services, patient representatives and genetics
health professionals explored the outcomes valued by those stakeholders,
and resulted in construction of a model of empowerment .
Data triangulation clarified that the qualitative findings support many of
those from the Delphi, but identified some additional valued outcome
domains that are not captured by available outcome measures, such
as empowerment of other relatives and future generations . In conclusion,
triangulation is a useful approach to investigate complex areas,
such as outcome measurement .
EP14.18
Psychological evaluation of familial ovarian cancer screening
(PsyFOcs): study update and baseline psychological data
D. Lancastle 1 , K. Brain 1 , L. Fraser 2 , U. Menon 2 , A. Rosenthal 2 , I. Jacobs 2 , J.
Mackay 2 , R. Iredale 1 , C. Phelps 1 , M. Rogers 1 , J. Austoker 3 , C. Bankhead 3 , A.
Clements 3 , E. Watson 4 ;
1 School of Medicine, Cardiff, United Kingdom, 2 Gynaecological Oncology, Institute
for Women’s Health, UCL, London, United Kingdom, 3 Primary Care Research
Education Group, Oxford, United Kingdom, 4 School of Health and Social
Care, Oxford Brookes University, Oxford, United Kingdom.
Purpose: The UK Familial Ovarian Cancer Screening Study (UK FO-
CSS) aims to determine the effectiveness of ovarian cancer screen-
ing for women at significantly increased risk of familial ovarian cancer.
Phase 2 of the study involves annual transvaginal ultrasound scan
(TVS) of the ovaries and 4-monthly CA125 blood tests with further
tests prompted by rising CA125 or abnormal TVS .
Method: PsyFOCS is a prospective cohort study which aims to determine
the psychological effects of ovarian cancer screening . Around
66% of women invited to PsyFOCS returned pre-screening baseline
questionnaires .
Results: Baseline analyses (N=991) showed that clinical levels of
depression and anxiety were reported by 2 .63% (n=26) and 14 .63%
(n=145) of women respectively . However, over a third (n=369, 37 .24%)
were moderately or highly distressed about their ovarian cancer risk
according to the Impact of Event Scale (IES). There were no significant
associations between IES distress and prior ovarian TVS (p= .50) or
the number (p= .95) or reported stressfulness (p= .56) of repeat ovarian
cancer screening in the past . However, highly distressed women were
significantly younger than those reporting moderate or low distress
(p