Focus group approach for developing written patient information in oncogenetics

Genetic Testing

Volumn 11, Issue 2, 2007, Pages 193-197

  Lasset, Christine ^a   Charavel, Marie ^b   Bonadona, Valérie ^a,c  

^a UNIVERSITÉ DE LYON   (France)

^b UNIV GRENOBLE ALPES   (France)

^c CENTRE LÉON BÉRARD   (France)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CANCER GENETICS; GENETIC ANALYSIS; HUMAN; INFORMATION PROCESSING; MEDICAL DOCUMENTATION; ONCOGENE; PATIENT INFORMATION; QUALITY CONTROL;

ATTITUDE TO HEALTH; FOCUS GROUPS; GENETICS, MEDICAL; HUMANS; ONCOGENES; PAMPHLETS; PATIENT EDUCATION;

EID: 34447282191     PISSN: 10906576     EISSN: None     Source Type: Journal    
DOI: 10.1089/gte.2006.0500     Document Type: Article

References (26)

1. American Society of Clinical Oncology Curriculum (1998) Cancer genetics & cancer predisposition testing. ASCO.
2. Appleton S, Fry A, Rees G, Rush R, Cull A (2000) Psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. Psychooncology 9:511-521.
3. Colin WF, Ropka ME, Jones SM, Miesfeldt S (2003) Information needs about hereditary breast cancer among women with early-onset breast cancer. Cancer Detect Prev 27:345-352.
4. Coulter A, Entwistle V, Gilbert D (1998) Informing patients: an assessment of the quality of patient information materials. King's Fund, London.
5. Dale W (1998) Evaluating focus group data: barriers to screening for prostate cancer patients. Cancer Treat Res 97:115-128.
6. Deane KA and Degner LF (1997) Determining the information needs of women after breast biopsy procedures. AORN J 65:767-776.
7. Di Prospero LS, Seminsky M, Honeyford J, Doan B, Franssen E, Meschino W, Chart P, Warmer E (2001) Psychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: findings from a focus group and a needs-assessment survey. CMAJ 164:1005-1009.
8. Duke SS, McGraw SA, Avis NE, Sherman A (2000) A focus group study of DES daughters: implications for health care providers. Psychooncology 9:439-444.
9. Ferrell BR, Grant MM, Funk B, Otis-Green S, Garcia N (1997) Quality of life in breast cancer survivors as identified by focus groups. Psychooncology 6:13-23.
10. Ford D, Easton DF, Stratton M, et al. (1998) Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Linkage Consortium. Am J Hum Genet 62:676-689.
11. Hallowell N (1998) Providing letters to patients. Patients find summary letters useful. Br Med J 316:18-30.
12. Hallowell N (2000) A qualitative study of the information needs of high-risk women undergoing prophylactic oophorectomy. Psychooncology 9:486-495.
13. Hallowell N, Murton F, Statham H, Green JM, Richards MP (1997) Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study. Br Med J 314:281-283.
14. Iredale R, Brain K, Gray J (2003) The information and support needs of women at high risk of familial breast and ovarian cancer: how can cancer genetic services give patients what they want? Fam Cancer 2:119-121.
15. Kenen R, Ardern-Jones A, Eeles R (2006) "Social separation among women under 40 years of age diagnosed with breast cancer and carrying a BRCA1 or BRCA2 mutation. J Genet Couns 15:149-162.
16. Kinney AY, DeVellis BM, Skrzynia C, Millikan R (2001) Genetic testing for colorectal carcinoma susceptibility: focus group responses of individuals with colorectal carcinoma and first-degree relatives. Cancer 91:57-65.
17. Kitzinger J (1994) The methodology of focus groups: the importance of interactions between research participants. Sociol Health Illness 16:103-121.
18. Kitzinger J (1995) Qualitative research. Introducing focus groups. Br Med J 311:299-302.
19. Krueger RA (1994) Focus groups: a practical guide for applied research, 2nd ed. Sage Publications. Thousand Oaks, CA.
20. Law Pertaining to Patient Rights and Healthcare Quality (2002) Loi relative aux droits des malades et à la qualité du système de santé. Accessed at http://www.santc.gouv.fr/.
21. Mellon S, Berry-Bobovski L, Gold R, Levin N, Tainsky MA (2006) Communication and decision-making about seeking inherited cancer risk information: findings from female survivor-relative focus groups. Psychooncology 15:193-208.
22. Ness RM, Holmes A, Klein R, Greene J, Dittus R (1998) Outcome slates of colorectal cancer: identification and description using patient focus groups. Am J Gastroenterol 93:1491-1497.
23. Pasacreta JV (1999) Psychosocial issues associated wilh increased breast and ovarian cancer risk: findings from focus groups. Arch Psychiatr Nurs 3:127-136.
24. Ramsey SD, Wilson S, Spencer A, Geidzinska A, Newcomb P (2003) Attitudes towards genetic screening for predisposition to colon cancer among cancer patients, their relatives and members of the community. Results of focus group interviews. Community Genet 6:29-36.
25. Tessaro I, Borstelmann N, Regan K, Rimer BK, Winer E (1997) Genetic testing for susceptibility to breast cancer: findings from women's focus groups. J Womens Health 6:317-327.
26. Vuckovic N, Harris EL, Valanis B, Stewart B (2003) Consumer knowledge and opinions of genetic testing for breast cancer risk. Am J Obstet Gynecol 189:48-53.