{"id":"https://openalex.org/W2024959357","doi":"https://doi.org/10.1002/ajmg.a.36971","title":"Stress and coping in parents of children with Prader\u2010Willi syndrome: Assessment of the impact of a structured plan of care","display_name":"Stress and coping in parents of children with Prader\u2010Willi syndrome: Assessment of the impact of a structured plan of care","publication_year":2015,"publication_date":"2015-03-08","ids":{"openalex":"https://openalex.org/W2024959357","doi":"https://doi.org/10.1002/ajmg.a.36971","mag":"2024959357","pmid":"https://pubmed.ncbi.nlm.nih.gov/25755074"},"language":"en","primary_location":{"id":"doi:10.1002/ajmg.a.36971","doi":"https://doi.org/10.1002/ajmg.a.36971","is_oa":false,"landing_page_url":"https://doi.org/10.1002/ajmg.a.36971","pdf_url":null,"source":{"id":"https://openalex.org/S180901878","display_name":"American Journal of Medical Genetics Part A","issn_l":"1552-4825","issn":["1552-4825","1552-4833"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-3","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Medical Genetics Part A","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5066952732","display_name":"Tatiana Tvrdik","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Tatiana Tvrdik","raw_affiliation_strings":["Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Debbie Mason","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Debbie Mason","raw_affiliation_strings":["Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5113026499","display_name":"Karin M. Dent","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Karin M Dent","raw_affiliation_strings":["Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Lisa Thornton","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210165030","display_name":"Prader Willi Syndrome Association","ror":"https://ror.org/05wry3s62","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I4210165030"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lisa Thornton","raw_affiliation_strings":["Utah Prader\u2010Willi Syndrome Association Salt Lake City Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Utah Prader\u2010Willi Syndrome Association Salt Lake City Utah","institution_ids":["https://openalex.org/I4210165030"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5045453619","display_name":"Sidney N hornton","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I108785884","display_name":"Intermountain Healthcare","ror":"https://ror.org/04mvr1r74","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I108785884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Sidney N hornton","raw_affiliation_strings":["Homer Warner Center for Informatics Research, Intermountain Healthcare, Salt Lake City, Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Homer Warner Center for Informatics Research, Intermountain Healthcare, Salt Lake City, Utah","institution_ids":["https://openalex.org/I108785884"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5039716945","display_name":"David H. Viskochil","orcid":"https://orcid.org/0000-0001-5364-3366","observed_orcids":["https://orcid.org/0000-0001-5364-3366"]},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"David H Viskochil","raw_affiliation_strings":["Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics; Division of Medical Genetics; University of Utah; Salt Lake City Utah","institution_ids":["https://openalex.org/I223532165"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5000079406","display_name":"David A. Stevenson","orcid":"https://orcid.org/0000-0001-8601-0020","observed_orcids":["https://orcid.org/0000-0001-8601-0020","https://orcid.org/0000-0002-0686-4075"]},"institutions":[{"id":"https://openalex.org/I223532165","display_name":"University of Utah","ror":"https://ror.org/03r0ha626","country_code":"US","type":"education","lineage":["https://openalex.org/I223532165"]},{"id":"https://openalex.org/I4210137306","display_name":"Stanford Medicine","ror":"https://ror.org/03mtd9a03","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210137306","https://openalex.org/I97018004"]},{"id":"https://openalex.org/I97018004","display_name":"Stanford University","ror":"https://ror.org/00f54p054","country_code":"US","type":"education","lineage":["https://openalex.org/I97018004"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"David A Stevenson","raw_affiliation_strings":["Department of Pediatrics, Division of Medical Genetics, Stanford University, Stanford, California","Department of Pediatrics, Division of Medical Genetics, University of Utah, Salt Lake City, Utah"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatrics, Division of Medical Genetics, Stanford University, Stanford, California","institution_ids":["https://openalex.org/I4210137306","https://openalex.org/I97018004"]},{"raw_affiliation_string":"Department of Pediatrics, Division of Medical Genetics, University of Utah, Salt Lake City, Utah","institution_ids":["https://openalex.org/I223532165"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I223532165"],"apc_list":{"value":4710,"currency":"USD","value_usd":4710},"apc_paid":null,"fwci":3.3063,"has_fulltext":false,"cited_by_count":23,"citation_normalized_percentile":{"value":0.90848378,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":89,"max":99},"biblio":{"volume":"167","issue":"5","first_page":"974","last_page":"982"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.9750999808311462,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},"topics":[{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":0.9750999808311462,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11928","display_name":"Genetic Syndromes and Imprinting","score":0.016100000590085983,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T13574","display_name":"Family Support in Illness","score":0.0010999999940395355,"subfield":{"id":"https://openalex.org/subfields/3312","display_name":"Sociology and Political Science"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/prader-willi-syndrome","display_name":"Prader-Willi syndrome","score":1.0},{"id":"https://openalex.org/keywords/parenting-stress","display_name":"parental stress","score":0.9990000128746033},{"id":"https://openalex.org/keywords/coping-styles","display_name":"coping styles","score":0.8019999861717224},{"id":"https://openalex.org/keywords/family-integration","display_name":"family integration","score":0.7129999995231628},{"id":"https://openalex.org/keywords/hyperphagia","display_name":"hyperphagia","score":0.7390000224113464},{"id":"https://openalex.org/keywords/developmental-delay","display_name":"developmental delay","score":0.7450000047683716},{"id":"https://openalex.org/keywords/perceived-stress-scale","display_name":"Perceived Stress Scale","score":0.675000011920929},{"id":"https://openalex.org/keywords/parents-of-chronically-ill-children","display_name":"parents of children with chronic illness","score":0.6579999923706055}],"concepts":[{"id":"https://openalex.org/C73282008","wikidata":"https://www.wikidata.org/wiki/Q1759895","display_name":"Coping (psychology)","level":2,"score":0.7803417444229126},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5249894857406616},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.5117978453636169},{"id":"https://openalex.org/C72563966","wikidata":"https://www.wikidata.org/wiki/Q1303415","display_name":"Cohort","level":2,"score":0.46336719393730164},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.46141064167022705},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.40261781215667725},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3823517858982086},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.06910791993141174},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000368","descriptor_name":"Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000369","descriptor_name":"Aged, 80 and over","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002884","descriptor_name":"Chromosomes, Human, Pair 15","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006963","descriptor_name":"Hyperphagia","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":true},{"descriptor_ui":"D006963","descriptor_name":"Hyperphagia","qualifier_ui":"Q000503","qualifier_name":"physiopathology","is_major_topic":false},{"descriptor_ui":"D006963","descriptor_name":"Hyperphagia","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D011218","descriptor_name":"Prader-Willi Syndrome","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":true},{"descriptor_ui":"D011218","descriptor_name":"Prader-Willi Syndrome","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D011218","descriptor_name":"Prader-Willi Syndrome","qualifier_ui":"Q000473","qualifier_name":"pathology","is_major_topic":false},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D013315","descriptor_name":"Stress, Psychological","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":true},{"descriptor_ui":"D013315","descriptor_name":"Stress, Psychological","qualifier_ui":"Q000503","qualifier_name":"physiopathology","is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1002/ajmg.a.36971","doi":"https://doi.org/10.1002/ajmg.a.36971","is_oa":false,"landing_page_url":"https://doi.org/10.1002/ajmg.a.36971","pdf_url":null,"source":{"id":"https://openalex.org/S180901878","display_name":"American Journal of Medical Genetics Part A","issn_l":"1552-4825","issn":["1552-4825","1552-4833"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-3","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Medical Genetics Part A","raw_type":"journal-article"},{"id":"pmid:25755074","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/25755074","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American journal of medical genetics. Part A","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"display_name":"Good health and well-being","score":1.0,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[{"display_name":"Clinical Trial","id":"https://openalex.org/study-designs/clinical-trial"}],"awards":[],"funders":[{"id":"https://openalex.org/F4320310050","display_name":"University of Utah","ror":"https://ror.org/03r0ha626"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":41,"referenced_works":["https://openalex.org/W82303675","https://openalex.org/W585257419","https://openalex.org/W1483749847","https://openalex.org/W1527402472","https://openalex.org/W1586503456","https://openalex.org/W1742975542","https://openalex.org/W1950150241","https://openalex.org/W1972730605","https://openalex.org/W1978876846","https://openalex.org/W1988640762","https://openalex.org/W1992861345","https://openalex.org/W1996299251","https://openalex.org/W1997737692","https://openalex.org/W2002133797","https://openalex.org/W2002566744","https://openalex.org/W2003583556","https://openalex.org/W2005204294","https://openalex.org/W2008354340","https://openalex.org/W2015224173","https://openalex.org/W2022695076","https://openalex.org/W2038141152","https://openalex.org/W2054951076","https://openalex.org/W2056139523","https://openalex.org/W2064286904","https://openalex.org/W2065899830","https://openalex.org/W2077743537","https://openalex.org/W2086903590","https://openalex.org/W2107043135","https://openalex.org/W2109553967","https://openalex.org/W2120350958","https://openalex.org/W2120831749","https://openalex.org/W2125108705","https://openalex.org/W2125408049","https://openalex.org/W2125530169","https://openalex.org/W2134109139","https://openalex.org/W2135681818","https://openalex.org/W2139155630","https://openalex.org/W2141740510","https://openalex.org/W2145474298","https://openalex.org/W3216687147","https://openalex.org/W4214825111"],"related_works":["https://openalex.org/W3092273782","https://openalex.org/W4407732312","https://openalex.org/W82035047","https://openalex.org/W4416851169","https://openalex.org/W1483749847","https://openalex.org/W2336328057","https://openalex.org/W2329993818","https://openalex.org/W2948301044","https://openalex.org/W7214745579","https://openalex.org/W2415534686"],"abstract_inverted_index":{"Hyperphagia,":[0],"developmental":[1],"delays,":[2],"and":[3,28,57,74,76,99,110,113,120,138,167,174,186,191],"maladaptive":[4],"behaviors":[5,153,194],"are":[6],"common":[7],"in":[8,14,184],"Prader-Willi":[9],"syndrome":[10],"(PWS)":[11],"likely":[12],"resulting":[13],"heightened":[15],"parental":[16,87,180],"stress.":[17],"Objectives":[18],"were":[19],"to":[20,64,95,155,196],"evaluate":[21],"stress,":[22],"describe":[23],"usefulness":[24],"of":[25,32,36,67,71,83,105,124],"coping":[26,131,171,193],"behaviors,":[27],"assess":[29],"the":[30,72,81,84,96,125,128,136,141,147,161,176],"impact":[31],"a":[33,65,187],"structured":[34],"Plan":[35],"Care":[37],"(PC)":[38],"on":[39],"parents":[40,68,134,200],"with":[41,43,101,201,203],"children":[42,106,202],"PWS.":[44,204],"Parents":[45,55],"answered":[46,135],"Perceived":[47],"Stress":[48],"Scale":[49],"(PSS-14),":[50],"Coping":[51,152],"Health":[52],"Inventory":[53],"for":[54,199],"(CHIP),":[56],"narrative/demographic":[58],"surveys.":[59],"The":[60],"PC":[61,148,162,188],"was":[62,92,127],"introduced":[63],"cohort":[66],"after":[69,80,140,146,160,175],"completion":[70],"PSS-14":[73,137],"CHIP":[75,139],"re-administered":[77],"4-6":[78],"month":[79],"introduction":[82],"PC.":[85,142,177],"Higher":[86],"stress":[88,144,181,190],"(n":[89],"=":[90,150,164],"57)":[91],"observed":[93],"compared":[94],"general":[97],"population,":[98],"associated":[100],"parent's":[102],"age,":[103],"number":[104],"living":[107],"at":[108],"home,":[109],"child's":[111],"age":[112],"residential":[114],"setting.":[115],"\"Maintaining":[116],"family":[117,157,197],"integration,":[118],"cooperation,":[119],"an":[121],"optimistic":[122],"definition":[123],"situation\"":[126],"most":[129],"useful":[130],"pattern.":[132],"Thirty-eight":[133],"Parental":[143],"decreased":[145,189],"(P":[149,163],"0.035).":[151],"related":[154,195],"\"maintaining":[156],"integration\"":[158],"increased":[159,183,192],"0.042).":[165],"Women":[166],"men":[168],"preferred":[169],"different":[170],"patterns":[172],"before":[173],"In":[178],"conclusion,":[179],"is":[182],"PWS,":[185],"stability":[198]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":2},{"year":2023,"cited_by_count":1},{"year":2022,"cited_by_count":4},{"year":2021,"cited_by_count":2},{"year":2020,"cited_by_count":3},{"year":2019,"cited_by_count":1},{"year":2018,"cited_by_count":1},{"year":2017,"cited_by_count":6},{"year":2016,"cited_by_count":1}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2016-06-24T00:00:00"}