{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2023,10,4]],"date-time":"2023-10-04T06:11:49Z","timestamp":1696399909169},"reference-count":21,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2014,1,5]],"date-time":"2014-01-05T00:00:00Z","timestamp":1388880000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2015,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre\u2010requisite for a clinic appointment.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non\u2010return of the forms.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants and Design<\/jats:title><jats:p>Based on a single regional \u2018breast cancer family\u2019 service in the <jats:styled-content style=\"fixed-case\">UK<\/jats:styled-content>, Analysis of quantitative data comparing women who did not return forms (<jats:italic>n<\/jats:italic>\u00a0=\u00a055) with those who had done so (<jats:italic>n<\/jats:italic>\u00a0=\u00a059), together with qualitative evaluation of potential barriers to form\u2010completion through semi\u2010structured telephone interviews with a random subset of \u2018non\u2010returners\u2019 (<jats:italic>n<\/jats:italic>\u00a0=\u00a023).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Non\u2010returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non\u2010returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non\u2010compliance. Twenty\u2010one participants confirmed that they would welcome an appointment at a \u2018breast cancer family\u2019 clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk.<\/jats:p><\/jats:sec><jats:sec><jats:title>Discussion and Conclusions<\/jats:title><jats:p>Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.12166","type":"journal-article","created":{"date-parts":[[2014,1,6]],"date-time":"2014-01-06T03:52:44Z","timestamp":1388980364000},"page":"1735-1743","source":"Crossref","is-referenced-by-count":1,"title":["Why do women not return family history forms when referred to breast cancer genetics services? A mixed\u2010method study"],"prefix":"10.1111","volume":"18","author":[{"given":"Kirstie A.","family":"Hanning","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Steel","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Goudie","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lorna","family":"McLeish","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jackie","family":"Dunlop","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica","family":"Myring","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Frank","family":"Sullivan","sequence":"additional","affiliation":[{"name":"Population Health Sciences School of Medicine University of Dundee Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jonathan","family":"Berg","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics and Tayside Familial Breast\/Ovarian Cancer Service Ninewells Hospital and Medical School Dundee UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gerry","family":"Humphris","sequence":"additional","affiliation":[{"name":"School of Medicine University of St Andrews St Andrews UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gozde","family":"Ozakinci","sequence":"additional","affiliation":[{"name":"School of Medicine University of St Andrews St Andrews UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2014,1,5]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-012-9589-4"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bjc.6603389"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-0004.2000.580408.x"},{"key":"e_1_2_9_5_1","first-page":"1","volume-title":"Inherited Cancer Syndromes: Current Clinical Management","author":"Acton RT","year":"2003"},{"key":"e_1_2_9_6_1","volume-title":"Familial Breast Cancer; Clinical Guideline No.14","author":"National Institute for Clinical Excellence (NICE)","year":"2004"},{"key":"e_1_2_9_7_1","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1017\/CBO9780511545863.014","volume-title":"Familial Breast and Ovarian Cancer: Genetics, Screening and Management","author":"Hodgson SV","year":"2002"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-007-9125-0"},{"key":"e_1_2_9_9_1","doi-asserted-by":"crossref","first-page":"143","DOI":"10.1017\/CBO9780511545863.011","volume-title":"Familial Breast and Ovarian Cancer: Genetics, Screening and Management","author":"Gray J","year":"2002"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10689-006-7849-x"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.37.3.197"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/fampra\/19.1.65"},{"key":"e_1_2_9_13_1","unstructured":"McLeishL.Demands and needs of women attending two Scottish family history breast cancer clinics. MSc Thesis.University of Manchester 2003."},{"key":"e_1_2_9_14_1","volume-title":"Deprivation and Health in Scotland","author":"Carstairs V","year":"1991"},{"key":"e_1_2_9_15_1","first-page":"171","article-title":"Younger women at increased risk for breast cancer: perceived risk, psychological well\u2010being, and surveillance behavior","volume":"16","author":"Lerman C","year":"1994","journal-title":"Journal of the National Cancer Institute Monographs"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.38.2.139"},{"key":"e_1_2_9_17_1","doi-asserted-by":"crossref","first-page":"504","DOI":"10.1093\/oxfordjournals.bmb.a072488","article-title":"Genetic aspects of breast cancer","volume":"47","author":"Steel M","year":"1991","journal-title":"British Medical Bulletin"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/djh017"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bjc.6602081"},{"key":"e_1_2_9_20_1","first-page":"151","volume-title":"The Self\u2010Regulation of Health and Illness Behaviour","author":"Cameron LD","year":"2003"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1016\/0959-8049(95)00601-X"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(71)92410-X"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fhex.12166","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.12166","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,3]],"date-time":"2023-10-03T16:25:57Z","timestamp":1696350357000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.12166"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,1,5]]},"references-count":21,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2015,10]]}},"alternative-id":["10.1111\/hex.12166"],"URL":"https:\/\/doi.org\/10.1111\/hex.12166","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,1,5]]}}}