Development and evaluation of a general information leaflet for women with a family history of breast cancer

Journal of Cancer Education

Volumn 17, Issue 3, 2002, Pages 155-160

  Andermann, Anne A J ^a   Austoker, Joan ^a   Watson, Eila K ^a   Lucassen, Anneke M ^a   Mackay, James ^a  

^a UNIVERSITY OF OXFORD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; EVALUATION; EVIDENCE BASED MEDICINE; FAMILY HISTORY; FEMALE; HUMAN; MEDICAL INFORMATION; PRIMARY MEDICAL CARE; PRIORITY JOURNAL;

ADULT; AGED; BREAST NEOPLASMS; FEMALE; GENETIC COUNSELING; GREAT BRITAIN; HUMANS; MIDDLE AGED; NEEDS ASSESSMENT; OVARIAN NEOPLASMS; PATIENT EDUCATION; PATIENT SATISFACTION; PILOT PROJECTS; PROGRAM DEVELOPMENT; PROGRAM EVALUATION; QUESTIONNAIRES; RISK ASSESSMENT; TEACHING MATERIALS;

EID: 0036739832     PISSN: 08858195     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (50)

1. Eccles D, Evans D, Mackay J, on behalf of the UK Cancer Family Study Group. Guidelines for a genetic risk based approach to advising women with a family history of breast cancer. J Med Genet. 2000;37:203-9.
2. Andermann A. Patient education, risk communication and informed choice: women with a family history of breast cancer who present to primary care (DPhil thesis). Oxford University, Oxford, U.K., 2000.
3. Hallowell N, Murton F. Statham H, et al. Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview and observational study. BMJ. 1997;314:281-3.
4. Warner E, Goel V, Ondrusek N, et al. Pilot study of an information aid for women with a family history of breast cancer. Health Expectations. 1999;2:118-28.
5. Austoker J, Ong G. Written information needs of women who are recalled for further investigation of breast screening: results of a multi-centre study. J Med Screen. 1994;1:238-44.
6. Vetto J, Dubois P, Vetto I. The impact of distribution of a patient-education pamphlet in a multidisciplinary breast clinic. J Cancer Educ. 1996;11:148-52.
7. Centre for Health Information Quality. Hi Quality Matters: improving the quality of information for patients. 2000;8:1-8.
8. Green M, Fost N. An interactive computer program for educating and counseling patients about genetic susceptibility to breast cancer. J Cancer Educ. 1997;2:204-8.
9. National Action Plan on Breast Cancer, Genetic testing for breast cancer risk: it's your choice. Washington, DC: National Cancer Institute, 1997.
10. Estimating Breast Cancer Risk: Questions and Answers for Women. Washington DC: National Cancer Institute, 1998.
11. Stalmeier P, Unic I, Verhoef L, et al. Evaluation of a shared decision-making program for women suspected to have a genetic predisposition to breast cancer: preliminary results. Med Decis Making. 1999; 19:230-41.
12. Breast cancer and family history: What you need to know. Woolloomooloo, NSW: National Breast Cancer Center, 1997.
13. Jackson A. Breast Cancer in Families: A Leaflet for Women with a Family History of Breast Cancer. Unpublished.
14. Mackay J. Cancer Genetics. London, U.K.: The Cancer Research Campaign, 1997.
15. Chamock D, Shepperd S, Needham G, et al. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health. 1999;53:105-11.
16. The QUICK (Quality Information Checklist) Website. London and Winchester, U.K.: Health Education Authority and Centre for Health Information Quality, 1999. Available from URL: 〈http://www.quick.org.uk〉.
17. Amos A. In her own best interests? Women and health education: a review of the last fifty years. Health Educ J. 1993;52/3:140-50.
18. Arthur V. Written patient information: a review. J Adv Nurs. 1995; 21:1081-6.
19. Centre for Health Information Quality. Topic Bulletin: Getting Started in Involving Consumers in the Provision and Production of Health Information, 1999;4:1-8.
20. Audrain J, Rimer B, Cella D, et al. Genetic counselling and testing for breast-ovarian cancer susceptibility: what do women want? J Clin Oncol. 1998;16:133-8.
21. Napoli M. What do women want to know? J Natl Cancer Inst Monogr. 1997;22:11-3.
22. Ryan E, Skinner C. Risk beliefs and interest in counseling: focus group interviews among first degree relatives of breast cancer patients. J Cancer Educ. 1999;14:99-103.
23. Geller G, Bernhardt B, Doksum T, et al, Decision making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at risk women? J Clin Oncol, 1998;16:2868-76.
24. Tessaro I, Borstelmann N, Regan K, et al. Genetic testing for susceptibility to breast cancer: findings from women's focus groups. J Womens Health. 1997;6:317-27.
25. Williams T. Risk perception, risk communication and message framing: breast cancer and family history (PhD thesis). Victoria, Australia: Deakin University, 1999.
26. Centre for Health Information Quality. Topic Bulletin: The Evidence Base for Consumer Health Information. 1999;5:1-8.
27. Cancer Research Campaign Factsheet 1.1: Incidence UK. London, U.K.: The Cancer Research Campaign, 1998.
28. Pharoah P, Day N, Duffy S, et al. Family history and the risk of breast cancer: a systematic review and meta-analysis. Intl J Cancer. 1997; 71:800-9.
29. Ford D, Easton D, Bishop T, et al, and the Breast Cancer Linkage Consortium. Risks of cancer in BRCA1-mutation carriers. Lancet. 1994;343:692-5.
30. Castilla L, Couch F, Erdos M, et al. Mutations in the BRCA1 gene in families with early-onset breast and ovarian cancer. Nat Genet. 1994;8:387-91.
31. Evans D, Fentiman I, McPherson K, et al. Familial breast cancer. BMJ. 1994;308:183-7.
32. Hoskins K, Stopfer J, Calzone K, et al. Assessment and counseling for women with a family history of breast cancer: a guide for clinicians. JAMA. 1995;273:577-85.
33. Consensus meeting on the management of women with a family history of breast cancer on 12 January 1998. Cambridge, U.K.: R&D Office of the Angia and Oxford NHS Executive and the Unit for Public Health Genetics, 1998.
34. Brekelmans C, Bartels C, Crepin E, et al., on behalf of the Rotterdam Committee of Medical and Genetic Counseling. Breast cancer screening in high risk women. Dis Markers. 1999;15(1-3):34-6.
35. Kerkilowske K. Efficacy of screening mammography among women aged 40 to 49 and 50 to 59 years: comparison of relative and absolute benefit. J Natl Cancer Inst Monogr. 1997;22:79-86.
36. Lalloo F, Boggis C, Evans D, et al. Screening by mammography, women with a family history of breast cancer. Eur J Cancer. 1998; 34:937-40.
37. Bruzzi P. Tamoxifen for the prevention of breast cancer: important questions remain unanswered, and existing trials should continue. BMJ. 1998;316:1181-2.
38. Clarke M. Ovarian ablation in breast cancer, 1896 to 1998: milestones along hierarchy of evidence from case report to Cochrane review. BMJ. 1998;317:1246-8.
39. Hartmann L, Schaid D, Woods J, et al. Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. N Engl J Med. 1999;340:77-84.
40. Doak C, Doak L, Root J. Teaching patients with low literacy skills. 2nd ed. Philadelphia, PA: J. B. Lippincott, 1996.
41. Vahabi M, Ferris L. Improving written patient education materials: a review of the evidence. Health Educ J. 1995;54:99-106.
42. Bishop P, Barlow J. Williams N, et al. Reflections on a multidisciplinary approach to evaluation of patient literature materials. Health Educ J. 1997;56:404-13.
43. Coulter A, Entwistle V, Gilbert D. Informing Patients: An Assessment of the Quality of Patient Information Materials. London, U.K.: The King's Fund. 1998.
44. Madden S, Johnston M, Parbhoo S. Evaluation of women's worries and the effects of a preparatory booklet for patients attending a breast clinic. Breast. 1994;3:169-72.
45. Making Health Communication Programs Work. Bethesda, MD: National Institutes of Health, 1992.
46. de Bock G, Perk D, Oosterwijk J, et al. Women worried about their familial breast cancer risk-a study on genetic advice in general practice. Fam Pract. 1997;14:40-3.
47. Wilson J (ed). Patient Information Forum Newsletter. 1999;1:1-8.
48. Centre for Health Information Quality. Topic Bulleti: Involving consumers in the development and evaluation of health information. 1999;4:1-8.
49. Watson E, Clements A, Yudkin P, et al. Evaluation of the impact of two education interventions on GP management of familial breast/ ovarian cancer cases: a cluster randomised controlled trial. Br J Gen Pract. 2001;51:817-21.
50. Dixon-Woods M. Dissemination of printed information for patients: a qualitative study of general practices. Health Educ J. 1998;57: 16-30.