Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

Hopwood, Penelope; Keeling, F; Long, Alison; Pool, Claire; Evans, D. Gareth; Howell, Anthony

doi:10.1002/(sici)1099-1611(1998090)7:5<402::aid-pon317>3.3.co;2-o

Psycho‐Oncology

1998

DOI: 10.1002/(sici)1099-1611(1998090)7:5<402::aid-pon317>3.3.co;2-o

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Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

Penelope Hopwood

F Keeling

Alison Long

et al.

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Cited by 55 publications

(74 citation statements)

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“…Our earlier research on a similar cohort suggests that psychiatric morbidity is not high in women with a family history of cancer,4 and factors other than personal risk seem to play a part in the aetiology of these disorders. However, early loss of a mother does have an ongoing negative impact on the personal lives and mental health of some high risk women.…”

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confidence: 78%

“…Women were found to adopt a more accurate perception of their risk without an increase in scores on general measures of anxiety at any time point post-counselling 4. There was a suggestion from questionnaire data that women with an accurate appraisal of risk after genetic counselling had the best levels of mental health and psychiatric diagnoses derived by interview were not caused by risk counselling.…”

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confidence: 99%

“…There was a suggestion from questionnaire data that women with an accurate appraisal of risk after genetic counselling had the best levels of mental health and psychiatric diagnoses derived by interview were not caused by risk counselling. However, some women with psychiatric morbidity reported that the early loss of a mother was very difficult to resolve,4 a problem also reported in adolescent daughters of breast cancer patients 5. The relationship between early loss and cancer worry in high risk women has not been previously reported.…”

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confidence: 99%

“…The service was staffed by a consultant cancer geneticist, a consultant medical oncologist with expertise in risk assessment, and a Research Fellow in cancer genetics. Earlier research showed that women's risk perceptions post-counselling did not vary according to which clinician had provided risk counselling 4. Referrals were received from general practitioners (>70%) and from surgeons/other clinicians but women could not self-refer.…”

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confidence: 99%

“…The study population was formed by 500 newly referred women offered an appointment at the clinic, who had completed Lerman's Cancer Worry Scale (CWS)8 9 and the Manchester Family History Clinic Questionnaire4 (to assess risk perception) before their first attendance at the Family History Clinic.…”

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confidence: 99%

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Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Hopwood

2001

Journal of Medical Genetics

104

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confidence: 78%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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confidence: 99%

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Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Hopwood

2001

Journal of Medical Genetics

104

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Clinical follow-up after bilateral risk reducing (?prophylactic?) mastectomy: mental health and body image outcomes

et al. 2000

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Background: In Manchester, approximately 120 women at ≥1: 4 lifetime risk of breast cancer have considered preventative surgery since 1992. Women treated within the Manchester protocol receive two genetic counselling sessions, a psychological assessment and a surgical consultation pre‐operatively and annual follow‐up post‐operatively. The vast majority of women have breast reconstruction. Methods: Since 1996, mental health and body image have been assessed in women attending annual follow‐up using self‐report questionnaires: the 28‐item General Health Questionnaire (GHQ) and 10‐item Body Image Scale (BIS). Women with high scores are assessed by clinical interview together with a proportion who have no significant problems. Results: Between 1995 and 1999, 76 women completed surgery. Ten were awaiting post‐operative review and 60 (91%) attended for follow‐up of whom 45 (75%) were interviewed. Questionnaire data were available for 52 (79%) women, mean age 40.8 years (range 27–58). Six women were gene mutation carriers and of these three had had breast cancer. One additional patient was affected but had not been genetically tested. Eight (17%) of 47 women with assessments in the first post‐operative year scored in the ‘caseness’ range on the GHQ: the mean GHQ score was 3.8 (S.D. 6.7), range 0–25. Results were comparable with those for women attending the Family History Clinic for risk assessment. The mean score on the BIS was 5.1 (S.D. 5.5), range 0–25, comparable with scores for women undergoing conservative surgery for breast cancer. Twenty‐one percent of women reported no negative change in body image following surgery (i.e. zero questionnaire summary scores) and the majority of changes reported were of minor degree (item scores 0 or 1). The most frequently reported changes were in sexual attractiveness (55%), feeling less physically attractive (53%) and self‐consciousness about appearance (53%): a third of women felt less feminine to a minimal degree. These results appeared stable over time. A minority of women had more serious psychological or body image concerns, usually in relation to surgical complications: they received further psychiatric intervention. Conclusions: For the majority of women there is no evidence of significant mental health or body image problems in the first 3 years following Bilateral Prophylactic Mastectomy (BPM), but women who have complications warrant additional psychological help. Careful pre‐operative preparation and long‐term monitoring are advocated in this new field of cancer prevention. Copyright © 2000 John Wiley & Sons, Ltd.

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Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups

et al. 2000

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Research to date has mainly focused on the short‐term psychological impact of genetic risk counselling for breast cancer. This study aimed to explore the long‐term consequences for women of being informed about an increased risk of breast cancer in terms of: the effect on their everyday lives, their coping strategies and their unmet needs in terms of the current service. The participants were 25 women with a family history of breast cancer who had received genetic risk counselling and had consequently been receiving clinical surveillance for at least 2 years. They took part in one of seven telephone focus groups and subsequently completed a feedback questionnaire. Transcripts of the focus groups were qualitatively analysed by three independent researchers with inter‐rater agreement between pairs of raters ranging from Kappa=0.61–0.79. Six key issues emerged from the data, which provide an important insight into the long‐term consequences of living with an increased risk of breast cancer concerning: (1) psychological adaptation, (2) behavioural adaptation, (3) family issues, (4) clinical surveillance, (5) provision of information, and (6) peer support. These findings, together with the quantitative results of the feedback questionnaire, have clinical implications that require further investigation in larger scale quantitative research. Copyright © 2000 John Wiley & Sons, Ltd.

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Psychological support needs for women at high genetic risk of breast cancer: some preliminary indicators

Cited by 55 publications

References 0 publications

Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Risk perception and cancer worry: an exploratory study of the impact of genetic risk counselling in women with a family history of breast cancer

Clinical follow-up after bilateral risk reducing (?prophylactic?) mastectomy: mental health and body image outcomes

Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups

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