Information and support needs of women with primary relatives with breast cancer: Development of the information and support needs questionnaire

Journal of Advanced Nursing

Volumn 35, Issue 4, 2001, Pages 497-507

  Chalmers, Karen I ^a,b   Luker, Karen A ^b   Leinster, Samuel J ^c   Ellis, Ian ^d   Booth, Katie ^b  

^a UNIVERSITY OF MANITOBA   (Canada)

^b UNIVERSITY OF MANCHESTER   (United Kingdom)

^c UNIVERSITY OF EAST ANGLIA   (United Kingdom)

^d ALDER HEY CHILDREN S HOSPITAL   (United Kingdom)

Author keywords

Breast cancer; Information and support needs; Instrument development; Pilot; Pilot test; Primary relatives; Questionnaire; Risk

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; BREAST TUMOR; FEMALE; GENETIC COUNSELING; GENETICS; HEALTH SERVICE; HUMAN; MASS SCREENING; MIDDLE AGED; NEEDS ASSESSMENT; PILOT STUDY; QUESTIONNAIRE; UNITED KINGDOM;

ADULT; BREAST NEOPLASMS; ENGLAND; FEMALE; GENETIC COUNSELING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MASS SCREENING; MIDDLE AGED; NEEDS ASSESSMENT; PILOT PROJECTS; QUESTIONNAIRES; WOMEN'S HEALTH SERVICES;

EID: 0035431088     PISSN: 03092402     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1365-2648.2001.01866.x     Document Type: Article

References (72)

1. Andrieu N., Clavel F., Auguier A., Gairard B., Bremond A., Lansac J., Piana L. & Flamant R. (1991) Association between breast cancer and family malignancies. European Journal of Cancer 27, 244-248.
2. Audrain J., Schwartz M.D., Lerman C., Hughes C., Peshkin B.N. & Biesecker B. (1998) Psychological distress in women seeking genetic counselling for breast cancer risk: the contributions of personality and appraisal. Annals of Behavioral Medicine 19, 370-377.
3. Baker G.A., Owens G.A., Thornton E.W. & Chadwick D.W. (1991) Multi-attribute utility approach: a novel approach to the assessment of quality of life for people with intractable epilepsy. In Proceedings of the European Health Psychology Society of 4th Annual Conference (Johnson M., Herbert M. & Marteau T., eds), British Psychology Society Publications, Oxford.
4. Beckett M., Redman S. & Lee C. (1991) Breast self-examination, cancer knowledge and breast disease in a sample of Hunter Valley women. Special issue: behavioral research in cancer. Behavior Change 7, 136-142.
5. Benedict S., Goon G., Hoomani J. & Holder P. (1997) Breast cancer detection by daughters of women with breast cancer. Cancer Practice 5, 213-219.
6. Black W., Nease R. & Tosteson A.N. (1995) Perceptions of breast cancer risk and screening effectiveness in women younger than 50 years. Journal of the National Cancer Institute 87, 720-731.
7. Bottorff J., Ratner P., Johnson J., Lovato C. & Joab S.A. (1998) Communicating cancer risk information: the challenges of uncertainty. Patient Education and Counseling 33, 67-81.
8. Brain K., Norman P., Gray J. & Mansel R. (1999) Anxiety and adherence to breast self-examination in women with a family history of breast cancer. Psychosomatic Medicine 61, 181-187.
9. Burke W., Culver J., Bowen D., Lowry D., Durfy S., McTiernan A. & Andersen M. (2000) Genetic counseling for women with an intermediate family history of breast cancer. American Journal of Medical Genetics 90, 361-378.
10. Calle E.E., Martin L.M., Thun M., Miracle H. & Health C.W. (1993) Family history, age and risk of breast cancer. American Journal of Epidemiology 138, 675-681.
11. Cawley M., Kostic J. & Cappello C. (1990) Informational and psychosocial needs of women choosing conservative surgery/primary radiation for early stage breast cancer. Cancer Nursing 13, 90-94.
12. Chalmers K. & Thomson K. (1996) Commg to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qualitative Health Research 6, 256-282.
13. Chalmers K., Thomson K. & Degner L. (1996) Information, support and communication needs of women with a family history of breast cancer. Cancer Nursing 19, 204-213.
14. Claus E., Risch N. & Thompson W. (1991) Genetic analysis of breast cancer and steroid hormone study. American Journal of Human Genetics 48, 232-242.
15. Claus E., Risch N. & Thompson W.D. (1994) Autosomal dominant inheritance of early-onset breast cancer. Implications for Prediction. Cancer 73, 643-651.
16. Cowley L., Heyman B., Stanton M. & Milner S. (2000) How women receiving adjuvant chemotherapy for breast cancer cope with their treatment: a risk management perspective. Journal of Advanced Nursing 31, 314-321.
17. Cull A., Anderson E., Campbell S., Mackay J., Smyth E. & Steel M. (1999) The impact of genetic counseling about breast cancer risk on women's risk perceptions and levels of distress. British Journal of Cancer 79, 501-508.
18. Degner L., Bowman D., Kristjanson L., O'Neil J. & Sloan J. (1994) Profiles of Information Needs in Women with Breast Cancer: Cross Cultural Comparisons. Research Report. University of Manitoba, Winnipeg, Canada.
19. Degner L., Kristjanson L., Bowman D., Sloan J., Carriere K., O'Neil J., Bilodeau B., Watson P. & Mueller B. (1997) Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association 277, 1485-1492.
20. Department of Health (1993) The Health of the Nation Key Area Handbook: Cancers. HMSO, London.
21. Dillman D.A. (1978) Mail and Telephone Surveys. The Total Design Method. Whiley Interscience, Boston.
22. Drossaert C., Boer H. & Seydel E.R. (1996) Perceived risk, anxiety, mammogram uptake, and breast self-examination of women with a family history of breast cancer: the role of knowing to be at increased risk. Cancer Detection and Prevention 20, 76-85.
23. Evans D.G., Fentiman I.S., McPherson K., Asbury D., Ponder B. & Howell A. (1994) Familial breast cancer. British Medical Journal of 308, 183-187.
24. Field P.A. & Morse J. (1996) Nursing Research. The Application of Qualitative Approaches. Chapman & Hall, London.
25. Frank T.S., Deffenbaugh A.M., Hulick M. & Gumpper K. (1999) Hereditary susceptibility to breast cancer: significance of age of onset in family history and contribution of BRCA1 and BRCA2. Disease Markers 16, 89-92.
26. Graydon J., Galloway S., Palmer-Wickham S., Harrison D., Rich van der Bij L., West P., Burlein-Hall S. & Evans-Bpyden B. (1997) Information needs of women during early treatment for breast cancer. Journal of Advanced Nursing 26, 59-64.
27. Hallowell N., Murton F., Stratham H., Green J.M. & Richards M.P. (1997) Women's needs for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview and observation study. British Medical Journal 314, 281-283.
28. Harrison D., Galloway S., Graydon J., Palmer-Wickham S. & Rich-van-der-Bij L. (1999) Information needs and preferences for information of women with breast cancer over a first course of radiation therapy. Patient Education and Counseling 38, 217-225.
29. Herbert-Croteau N., Goggin P. & Kishchuk N. (1997) Estimation of breast cancer risk by women aged 40 and over: a population-based study. Canadian Journal of Public Health 88, 392-396.
30. Hill D. & Shugg D. (1989) Breast self-examination practices and attitudes among breast cancer, benign breast disease and general practice patients. Health Education Research 4, 193-203.
31. Iglehart J.D., Miron A., Rimer B.K., Winer E.P., Berry D. & Shildkraut M.J. (1998) Overestimation of hereditary breast cancer risk. Annals of Surgery 228, 375-384.
32. Kash K.M., Holland J.C., Osborne M.P. & Miller D.G. (1995) Psychological counseling strategies for women at risk of breast cancer. Journal of the National Cancer Institute Monographs 17, 73-79.
33. Keeney R.L. & Raiffa H. (1976) Decisions with Multiple Objectives. Preferences and Value Tradeoffs. Wiley, New York.
34. Lancaster D.R. (1991) Coping with Appraised Threat of Breast Cancer: Primary Prevention Coping Behaviours Utilized by Women at Increased Risk. Unpublished PhD Thesis. Wayne State University, MI, USA.
35. Lerman C. & Croyle R. (1994) Psychological issues in genetic testing from breast cancer susceptibility. Archives of Internal Medicine 154, 609-616.
36. Lerman C., Daly M., Sands C., Balshem A., Lustbader E., Heggan T., Goldstein L., James J. & Enstrom P. (1993) Mammography adherence and psychological distress among women at risk for breast cancer. Journal of the National Cancer Institute 85, 1074-1080.
37. Leydon G., Boulton M., Moyniham C., Mossman J., Boudioni M. & McPherson K. (2000) Cancer patients' information seeking behaviour: in depth interview study. British Medical Journal 320, 909-913.
38. Luker K.A., Beaver K., Leinster S.J. & Owens R.G. (1996) Information needs and sources of information for women with breast cancer: a follow-up study. Journal of Advanced Nursing 23, 487-495.
39. Luker K.A., Beaver K., Leinster S.J., Owens R.G., Degner L.F. & Sloan J.A. (1995) The information needs of women newly diagnosed with breast cancer. Journal of Advanced Nursing 22, 134-141.
40. Lynch H., Watson P., Conway T., Lynch J., Slominski S., Narod S., Feunteun J. & Lenoir G. (1993) DNA screening for breast-ovarian cancer susceptibility based on linked markers. Archives of Internal Medicine 153, 1979-1987.
41. Magnusson C., Colditz G., Rosner B., Bergstrom R. & Persson I. (1998) Association of family history and other risk factors with breast cancer risk. Cancer Causes and Control 9, 259-267.
42. Manning P. & Cullum-Swan B. (1994) Narrative, content and semiotic analysis. In Handbook of Qualitative Analysis (Denzin N. & Lincoln Y., eds), Sage, London, pp. 463-477.
43. McCredie M., Skegg D.C. & Williams S. (1997) Family history and risk of breast cancer in New Zealand. International Journal of Cancer 73, 503-507.
44. McPherson K., Steel C. & Dixon J.M. (2000) Breast cancer -Epidemiology, risk factors, and genetics. British Medical Journal 321, 624-628.
45. Merseyside and Cheshire Cancer Registry (1994) Breast Cancer Bulletin: Stimulating the Debate. North West Regional Health Authority, Liverpool.
46. Miki Y., Swensen J., Schattuck-Eidens Futtreal A., Harshman K., Tavtigian S., Liu Q., Cochran C., Bennett L.M. & Ding W. (1994) A strong candidate for the breast and ovarian cancer susceptibility gent BRCA1. Science 266, 66-71.
47. National Cancer Institute of Canada (NCIC) (1999) Canadian Cancer Statistics 1999. NCIC, Toronto.
48. Negri E., Braga C., La-Vecchia C., Francheschi S. & Parazzine F. (1997) Family history of breast cancer. International Journal of Cancer 72, 735-738.
49. Nunnally J.C. (1978) Psychometric Theory. McGraw-Hill, Toronto.
50. Oppenheim A.N. (1966) Questionnaire Design and Attitude Measurement. Heinemann, London.
51. Ottman R., Pike M., King M., Casagrande J. & Henderson B. (1986) Familial breast cancer in a population-based series. American Journal of Epidemiology 123, 15-21.
52. Page D.L., Steel C.M. & Dixon J.M. (1995) Carcinoma in situ and patients at high risk of breast cancer. British Medical Journal 310, 39-42.
53. Pharoah P., Lipscombe J., Redman K., Day N., Easton D. & Ponder B. (2000) Family predisposition to breast cancer in a British population. Implication for Prevention European Journal of Cancer 36, 773-779.
54. Rees C.E. & Bath P.A. (2000a) The information needs and source preference of women with breast cancer and their family members: a review of the literature published between 1988 and 1998. Journal of Advanced Nursing 31, 833-841.
55. Rees C.E. & Bath P.A. (2000b) Meeting the information needs of daughters of women with early breast cancer: patients and health care professionals as providers. Cancer Nursing 23, 71-79.
56. Richardson J.L., Danley K., Mondrus G.T., Deapen D. & Mack T. (1993) Mammography and physician breast exams after the diagnosis of breast cancer in a twin or non-twin sister. Cancer Causes and Control 4, 251-260.
57. Schildkraut J., Risch N. & Thompson W. (1989) Evaluating genetic association among ovarian, breast, and endometrial cancer: evidence for a breast/ovarian cancer relationship. American Journal of Human Genetics 45, 521-529.
58. Schwartz A., King M., Belle S., Satariano W. & Swanson G. (1985) Risk of breast cancer to relatives of young breast cancer patients. Journal of National Cancer Institute 75, 665-668.
59. Sellers T.A., King R.A., Cerhan J.R., Chen P.L., Grabrick D.M., Kushi L.H., Oetting W.S., Vierkant R.A., Vachon C.M., Couch F.J., Therneau T.M., Olson J.E., Pankratz V.S., Hartmann L.C. & Anderson V.E. (1999) Fifty-year follow-up of cancer incidence in a historical cohort of Minnesota breast cancer families. Cancer Epidemiological Biomarkers Prevention 8, 1051-1057.
60. de Silva D., Gilbert F., Needham G., Deans H., Turnpenny P. & Haites N. (1995) Identification of women at high genetic risk of breast cancer through the National Health Service Breast Screening Programme (NHSBSP). Journal of Medical Genetics 32, 862-866.
61. Smith B., Gadd M., Lawler C., MacDonald D., Grundberg S., Chi F., Carlson K., Comegno A. & Souba W. (1996) Perception of breast cancer risk among women in breast center and primary care settings: correlation with age and family history of breast cancer. Surgery 120, 297-303.
62. Tavtigian S.V., Simard J., Rommens J., Couch F., Shattuck-Eidens D., Neuhausen S., Merajver S., Thorlacius S., Offit K., Stoppa-Eyonnet D., Belanger C., Bell S., Bogden R. & Chen Q. (1996) The complete BRCA2 gene and mutations in chromosome 13q-linked kindreds. National Genetics 12, 333-337.
63. Thirlaway K. & Fallowfield L. (1993) The psychological consequences of being at risk of developing breast cancer. European Journal of Cancer Prevention 2, 467-471.
64. Thorne S., Balneaves L. & Reimer J. (1999) Practical support for women with breast cancer. Canadian Oncology Nursing 9, 74-77, 82-85.
65. Tomasson H. & Tomasson K. (1996) Oral contraceptives and risk of breast cancer. A historical prospective case-control study. Acta Obstetrics and Gynecology Scandinavia 75, 157-161.
66. Torrance G., Boyle M. & Horwood S. (1982) Application of multi-attribute theory to measure social preferences for health states. Operations Research 30, 1043-1069.
67. Vernon S.W., Voget V.G., Halabi S. & Bondy M. (1993) Factors associated with perceived risk of breast cancer among women attending a screening program. Breast Cancer Research and Treatment 28, 137-144.
68. Vogel V. (1991) High risk populations as targets for breast cancer prevention trials. Preventive Medicine 20, 86-100.
69. Vogel V.G., Schreiber-Graves D., Vernon S.W., Lord J.A., Winn R.J. & Peters G.N. (1990) Mammographie screening of women with increased risk of breast cancer. Cancer 66, 1613-1620.
70. Watson M., Duvivier V., Wade-Walsh M., Ashley S., Davidson J., Papaikonomou M., Murday V., Sacks N. & Eeles R. (1998) Family-history of breast cancer: What do women understand and recall about their genetic risk? Journal of Medical Genetics 35, 731-738.
71. Wellisch D.K., Gritz E., Schain W., Wang H. & Siau J. (1991) Psychological functioning of daughters of breast cancer patients. Part 1: daughters and comparison subjects. Psychosomatics 32, 324-335.
72. Ziogas A., Gildea M., Cohen P., Bringman D., Taylor T.H., Seminara D., Barker D., Casey G., Haile R., Liao S., Thomas D., Noble B., Kurosaki T. & Anton-Culver H. (2000) Cancer risk estimates for family members of a population-based family registry for breast and ovarian cancer. Cancer Epidemiological Biomarkers Prevention 9, 103-111.