{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,26]],"date-time":"2026-02-26T07:11:26Z","timestamp":1772089886237,"version":"3.50.1"},"reference-count":65,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2012,2,20]],"date-time":"2012-02-20T00:00:00Z","timestamp":1329696000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Journal of Advanced Nursing"],"published-print":{"date-parts":[[2012,9]]},"abstract":"<jats:sec><jats:label\/><jats:p><jats:sc>muir l.a., george p.m. &amp; whitehead l. (2012)<\/jats:sc>\u2003Using the experiences of people with familial hypercholesterolaemia to help reduce the risk of cardiovascular disease: a qualitative systematic review. <jats:italic>Journal of Advanced Nursing<\/jats:italic><jats:bold>68<\/jats:bold>(9), 1920\u20131932.<\/jats:p><\/jats:sec><jats:sec><jats:title>Abstract<\/jats:title><jats:p><jats:bold>Aims.\u2002<\/jats:bold> This paper presents the results of a systematic review of qualitative studies identifying the experiences and perceptions of people living with familial hypercholesterolaemia.<\/jats:p><jats:p><jats:bold>Background.\u2002<\/jats:bold> Familial hypercholesterolaemia is a genetic condition that causes cardiovascular disease and early death. It can be easily diagnosed and treated. Diagnostic rates sit around 20% of the at\u2010risk population in western countries. Screening the relatives of diagnosed people is the best way of identifying those at risk so that, if necessary, treatment can be offered. Presentation for screening can depend on diagnosed people informing relatives of their increased risk and advising them to volunteer for testing. We conducted this review to identify if this approach to screening contributes to low diagnostic and treatment rates.<\/jats:p><jats:p><jats:bold>Data sources.\u2002<\/jats:bold> Searches were made of 11 electronic databases and grey literature from 1990\u2013February 2011.<\/jats:p><jats:p><jats:bold>Review method.\u2002<\/jats:bold> A systematic review of studies that met the review aim was undertaken. Relevant data were extracted and a narrative synthesis conducted.<\/jats:p><jats:p><jats:bold>Results.\u2002<\/jats:bold> Poor health literacy, family and other social dynamics can both impede the ability and reduce the likelihood of diagnosed people approaching and adequately explaining the risk of familial hypercholesterolaemia to relatives. Relatives may misunderstand the significance of their messages or not see them as personally relevant.<\/jats:p><jats:p><jats:bold>Conclusion.\u2002<\/jats:bold> To ensure contact takes place and relatives are able to make informed decisions around being tested, expert clinicians must evaluate the health literacy and social contexts of diagnosed people before assigning them responsibility for contacting family and actively provide support and follow up.<\/jats:p><\/jats:sec>","DOI":"10.1111\/j.1365-2648.2012.05957.x","type":"journal-article","created":{"date-parts":[[2012,2,21]],"date-time":"2012-02-21T03:19:21Z","timestamp":1329794361000},"page":"1920-1932","source":"Crossref","is-referenced-by-count":15,"title":["Using the experiences of people with familial hypercholesterolaemia to help reduce the risk of cardiovascular disease: a qualitative systematic review"],"prefix":"10.1111","volume":"68","author":[{"given":"Lauretta A.","family":"Muir","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter M.","family":"George","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa","family":"Whitehead","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2012,2,20]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2004.05.010"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.1997.00440260117015"},{"key":"e_1_2_11_4_1","volume-title":"HSAC Report","author":"Basu A.","year":"2010"},{"key":"e_1_2_11_5_1","volume-title":"Literacy and health outcomes. Evidence Report\/Technology","author":"Berkman N.","year":"2004"},{"issue":"2","key":"e_1_2_11_6_1","first-page":"200","article-title":"What are the chances? Evaluating risk and benefit information in consumer health materials","volume":"92","author":"Burkell J.","year":"2004","journal-title":"Journal of the Medical Library Association"},{"issue":"3","key":"e_1_2_11_7_1","first-page":"363","article-title":"\u201cWhat does this mean?\u201d How Web\u2010based consumer health information fails to support information seeking in the pursuit of informed consent for screening test decisions","volume":"93","author":"Burkell J.","year":"2005","journal-title":"Journal of the Medical Library Association"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.atherosclerosis.2003.11.010"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2009.01.008"},{"key":"e_1_2_11_10_1","volume-title":"The Handbook of Research Synthesis","author":"Cooper H.","year":"1994"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-009-9271-7"},{"key":"e_1_2_11_12_1","unstructured":"DeMottK. NhereraL. ShawE.J. MinhasR. HumphriesS.E. KathoriaM. RitchieG. NunesV. DaviesD. LeeP. McDowellI. NeilA. QureshiN. RowlandsP. SeedM. StraceyH. ThorogoodM.&WatsonM.(2008)Clinical Guidelines and Evidence Review for Familial hypercholesterolaemia: The Identification and Management of Adults and Children with Familial Hypercholesterolaemia.National Collaborating Centre for Primary Care and Royal College of General Practitioners London."},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2009-1162B"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2288-6-35"},{"key":"e_1_2_11_15_1","volume-title":"Meaningful Relationships: Talking, Sense, and Relating","author":"Duck S.W.","year":"1994"},{"issue":"2","key":"e_1_2_11_16_1","doi-asserted-by":"crossref","first-page":"78","DOI":"10.1159\/000016141","article-title":"Patient understanding of genetic principles and their expectations of genetic services within the NHS: a qualitative study","volume":"1","author":"Emery J.","year":"1998","journal-title":"Public Health Genomics"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1080\/02813430500504305"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1370\/afm.529"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2007.08.001"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1080\/02813430601183215"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.327.7417.741"},{"key":"e_1_2_11_22_1","volume-title":"Familial Hypercholesterolemia","author":"Goldstein J.","year":"2001"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00175"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2011.05636.x"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0091-7435(02)00065-8"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1097\/00005082-200407000-00004"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(00)04334-8"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/109019818401100101"},{"key":"e_1_2_11_29_1","first-page":"45","volume-title":"Health Behavior and Health Education: Theory, Research and Practice","author":"Janz N.","year":"2002"},{"key":"e_1_2_11_30_1","volume-title":"Appraise evidence","author":"Joanna Briggs Institute","year":"2010"},{"issue":"9","key":"e_1_2_11_31_1","doi-asserted-by":"crossref","first-page":"1096","DOI":"10.1111\/j.1651-2227.2003.tb02584.x","article-title":"Quality of life, anxiety and concerns among statin\u2010treated children with familial hypercholesterolaemia and their parents","volume":"92","author":"de Jongh S.","year":"2003","journal-title":"Acta P\u00e6diatrica"},{"issue":"4","key":"e_1_2_11_32_1","doi-asserted-by":"crossref","first-page":"244","DOI":"10.1159\/000064200","article-title":"How disturbing is it to be approached for a genetic cascade screening programme for familial hypercholesterolaemia?","volume":"4","author":"van Maarle M.C.","year":"2001","journal-title":"Public Health Genomics"},{"key":"e_1_2_11_33_1","doi-asserted-by":"publisher","DOI":"10.1136\/jmg.40.1.e3"},{"key":"e_1_2_11_34_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.324.7349.1303"},{"key":"e_1_2_11_35_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0021-9150(02)00330-1"},{"key":"e_1_2_11_36_1","doi-asserted-by":"publisher","DOI":"10.1093\/pubmed\/fdg010"},{"key":"e_1_2_11_37_1","doi-asserted-by":"publisher","DOI":"10.1258\/096914106778440617"},{"key":"e_1_2_11_38_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2702.2000.00424.x"},{"key":"e_1_2_11_39_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32592"},{"key":"e_1_2_11_40_1","volume-title":"The health targets 2009\/10","author":"Ministry of Health","year":"2009"},{"key":"e_1_2_11_41_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1000097"},{"key":"e_1_2_11_42_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.1991.tb03436.x"},{"issue":"1326","key":"e_1_2_11_43_1","first-page":"97","article-title":"Preventing cardiovascular disease: a review of the effectiveness of identifying the people with familial hypercholesterolaemia in New Zealand","volume":"123","author":"Muir L.A.","year":"2010","journal-title":"New Zealand Medical Journal"},{"key":"e_1_2_11_44_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201360"},{"key":"e_1_2_11_45_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-9001-8"},{"key":"e_1_2_11_46_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2007.04.008"},{"key":"e_1_2_11_47_1","doi-asserted-by":"publisher","DOI":"10.1080\/03085140050174750"},{"key":"e_1_2_11_48_1","volume-title":"Model of care familial hypercholesterolemia","author":"Office of Population Health Genomics","year":"2008"},{"key":"e_1_2_11_49_1","first-page":"173","volume-title":"Personal relationships and social support","author":"Pierce G.R.","year":"1990"},{"issue":"6","key":"e_1_2_11_50_1","doi-asserted-by":"crossref","first-page":"1028","DOI":"10.1037\/0022-3514.61.6.1028","article-title":"General and relationship\u2010based perceptions of social support \u2010 are 2 constructs better than one","volume":"61","author":"Pierce G.R.","year":"1991","journal-title":"Journal of Personality and Social Psychology"},{"key":"e_1_2_11_51_1","doi-asserted-by":"publisher","DOI":"10.1177\/0265407597143004"},{"key":"e_1_2_11_52_1","doi-asserted-by":"publisher","DOI":"10.1172\/JCI200318925"},{"key":"e_1_2_11_53_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-9566.1993.tb00363.x"},{"key":"e_1_2_11_54_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.NOR.0000337283.55670.75"},{"key":"e_1_2_11_55_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(99)00099-4"},{"key":"e_1_2_11_56_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(00)04053-8"},{"key":"e_1_2_11_57_1","volume-title":"The Health Belief Model","author":"Strecher V.J.","year":"1997"},{"key":"e_1_2_11_58_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1651-2227.1996.tb13916.x"},{"issue":"2","key":"e_1_2_11_59_1","doi-asserted-by":"crossref","first-page":"249","DOI":"10.1542\/peds.98.2.249","article-title":"Psychosocial function during treatment for familial hypercholesterolemia","volume":"98","author":"Tonstad S.","year":"1996","journal-title":"Pediatrics"},{"key":"e_1_2_11_60_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(00)03587-X"},{"key":"e_1_2_11_61_1","doi-asserted-by":"publisher","DOI":"10.1001\/archinte.163.1.65"},{"key":"e_1_2_11_62_1","doi-asserted-by":"publisher","DOI":"10.1038\/ncpcardio0941"},{"key":"e_1_2_11_63_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.hlc.2010.02.002"},{"key":"e_1_2_11_64_1","doi-asserted-by":"publisher","DOI":"10.1177\/1363459309103915"},{"key":"e_1_2_11_65_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2010.03.053"},{"issue":"5","key":"e_1_2_11_66_1","doi-asserted-by":"crossref","first-page":"273","DOI":"10.1159\/000121398","article-title":"Patients\u2019 understandings and experiences of familial hypercholesterolemia","volume":"11","author":"Weiner K.","year":"2008","journal-title":"Public Health Genomics"}],"container-title":["Journal of Advanced Nursing"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1365-2648.2012.05957.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1365-2648.2012.05957.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,30]],"date-time":"2023-10-30T08:11:40Z","timestamp":1698653500000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1365-2648.2012.05957.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,2,20]]},"references-count":65,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2012,9]]}},"alternative-id":["10.1111\/j.1365-2648.2012.05957.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1365-2648.2012.05957.x","archive":["Portico"],"relation":{},"ISSN":["0309-2402","1365-2648"],"issn-type":[{"value":"0309-2402","type":"print"},{"value":"1365-2648","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,2,20]]}}}