{"id":"https://openalex.org/W7225290752","doi":"https://doi.org/10.6084/m9.figshare.34919755","title":"Additional file 2 of Patient-reported experiences of people living with a rare disease with secondary and tertiary care: a scoping review","display_name":"Additional file 2 of Patient-reported experiences of people living with a rare disease with secondary and tertiary care: a scoping review","publication_year":2026,"publication_date":"2026-11-04","ids":{"openalex":"https://openalex.org/W7225290752","doi":"https://doi.org/10.6084/m9.figshare.34919755"},"language":"en","primary_location":{"id":"doi:10.6084/m9.figshare.34919755","doi":"https://doi.org/10.6084/m9.figshare.34919755","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34919755","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["datacite"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://doi.org/10.6084/m9.figshare.34919755","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5037922892","display_name":"Rita Francisco","orcid":"https://orcid.org/0000-0002-4398-3401","observed_orcids":["https://orcid.org/0000-0002-4398-3401"]},"institutions":[{"id":"https://openalex.org/I1285072804","display_name":"European Organisation for Rare Diseases","ror":"https://ror.org/019w4mg02","country_code":"FR","type":"nonprofit","lineage":["https://openalex.org/I1285072804"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Rita Francisco","raw_affiliation_strings":["European Organisation for Rare Diseases"],"raw_orcid":"https://orcid.org/0000-0002-4398-3401","affiliations":[{"raw_affiliation_string":"European Organisation for Rare Diseases","institution_ids":["https://openalex.org/I1285072804"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5069168470","display_name":"Michel Wensing","orcid":"https://orcid.org/0000-0001-6569-8137","observed_orcids":["https://orcid.org/0000-0001-6569-8137"]},"institutions":[{"id":"https://openalex.org/I223822909","display_name":"Heidelberg University","ror":"https://ror.org/038t36y30","country_code":"DE","type":"education","lineage":["https://openalex.org/I223822909"]}],"countries":["DE"],"is_corresponding":false,"raw_author_name":"Michel Wensing","raw_affiliation_strings":["Heidelberg University"],"raw_orcid":"https://orcid.org/0000-0001-6569-8137","affiliations":[{"raw_affiliation_string":"Heidelberg University","institution_ids":["https://openalex.org/I223822909"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5040814922","display_name":"Jennifer Jones","orcid":"https://orcid.org/0000-0001-6936-6092","observed_orcids":["https://orcid.org/0000-0001-6936-6092"]},"institutions":[{"id":"https://openalex.org/I153648349","display_name":"University of Leicester","ror":"https://ror.org/04h699437","country_code":"GB","type":"education","lineage":["https://openalex.org/I153648349"]},{"id":"https://openalex.org/I4210150250","display_name":"Genetic Alliance UK (United Kingdom)","ror":"https://ror.org/05dv2tv03","country_code":"GB","type":"company","lineage":["https://openalex.org/I4210150250"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Jennifer Jones","raw_affiliation_strings":["Genetic Alliance UK (United Kingdom)","University of Leicester"],"raw_orcid":"https://orcid.org/0000-0001-6936-6092","affiliations":[{"raw_affiliation_string":"Genetic Alliance UK (United Kingdom)","institution_ids":["https://openalex.org/I4210150250"]},{"raw_affiliation_string":"University of Leicester","institution_ids":["https://openalex.org/I153648349"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5093685896","display_name":"Jessie Dubief","orcid":"https://orcid.org/0000-0001-8846-6240","observed_orcids":["https://orcid.org/0000-0001-8846-6240"]},"institutions":[{"id":"https://openalex.org/I1285072804","display_name":"European Organisation for Rare Diseases","ror":"https://ror.org/019w4mg02","country_code":"FR","type":"nonprofit","lineage":["https://openalex.org/I1285072804"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Jessie Dubief","raw_affiliation_strings":["European Organisation for Rare Diseases"],"raw_orcid":"https://orcid.org/0000-0001-8846-6240","affiliations":[{"raw_affiliation_string":"European Organisation for Rare Diseases","institution_ids":["https://openalex.org/I1285072804"]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":4,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.87335031,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11722","display_name":"Patient Satisfaction in Healthcare","score":0.7577999830245972,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11722","display_name":"Patient Satisfaction in Healthcare","score":0.7577999830245972,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10827","display_name":"Patient-Provider Communication in Healthcare","score":0.044599998742341995,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T11639","display_name":"Mental Health and Patient Involvement","score":0.03319999948143959,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/rare-diseases","display_name":"rare diseases","score":0.8799999952316284},{"id":"https://openalex.org/keywords/patient-reported-experience","display_name":"patient-reported experience","score":0.9610000252723694},{"id":"https://openalex.org/keywords/secondary-care","display_name":"secondary care","score":0.890999972820282},{"id":"https://openalex.org/keywords/tertiary-care","display_name":"tertiary care","score":0.9890000224113464},{"id":"https://openalex.org/keywords/patient-experience","display_name":"patient experience","score":0.6010000109672546},{"id":"https://openalex.org/keywords/health-care-access","display_name":"health care access","score":0.5120000243186951}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5605999827384949},{"id":"https://openalex.org/C2779701055","wikidata":"https://www.wikidata.org/wiki/Q929833","display_name":"Rare disease","level":3,"score":0.47450000047683716},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.3885999917984009},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.34860000014305115},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.320499986410141},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.32030001282691956},{"id":"https://openalex.org/C509550671","wikidata":"https://www.wikidata.org/wiki/Q126945","display_name":"Medical education","level":1,"score":0.31310001015663147},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.3061000108718872},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.2741999924182892},{"id":"https://openalex.org/C2777601897","wikidata":"https://www.wikidata.org/wiki/Q3409113","display_name":"Presentation (obstetrics)","level":2,"score":0.2734000086784363},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.26899999380111694},{"id":"https://openalex.org/C2778137410","wikidata":"https://www.wikidata.org/wiki/Q2732820","display_name":"Government (linguistics)","level":2,"score":0.26579999923706055},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.25270000100135803}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.6084/m9.figshare.34919755","doi":"https://doi.org/10.6084/m9.figshare.34919755","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34919755","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},{"id":"doi:10.6084/m9.figshare.34919755.v1","doi":"https://doi.org/10.6084/m9.figshare.34919755.v1","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34919755.v1","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"}],"best_oa_location":{"id":"doi:10.6084/m9.figshare.34919755","doi":"https://doi.org/10.6084/m9.figshare.34919755","is_oa":true,"landing_page_url":"https://doi.org/10.6084/m9.figshare.34919755","pdf_url":null,"source":{"id":"https://openalex.org/S4377196282","display_name":"Figshare","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I4210132348","host_organization_name":"Figshare (United Kingdom)","host_organization_lineage":["https://openalex.org/I4210132348"],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":null,"is_accepted":false,"is_published":false,"raw_source_name":null,"raw_type":"JournalArticle"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":0.9763000011444092,"display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7225336393","https://openalex.org/W7225319586","https://openalex.org/W7225298360","https://openalex.org/W7225245262","https://openalex.org/W6902286925","https://openalex.org/W6958584743","https://openalex.org/W6902235765","https://openalex.org/W7212018885","https://openalex.org/W6902180877","https://openalex.org/W6920825227"],"abstract_inverted_index":null,"counts_by_year":[],"updated_date":"2026-11-07T11:25:07.637180","created_date":"2026-11-06T00:00:00"}
