{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,30]],"date-time":"2025-10-30T05:03:42Z","timestamp":1761800622562,"version":"build-2065373602"},"reference-count":61,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2025,1,8]],"date-time":"2025-01-08T00:00:00Z","timestamp":1736294400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100019418","name":"NIHR Maudsley Biomedical Research Centre","doi-asserted-by":"publisher","award":["IS\u2010BRC\u20101215\u201020018"],"award-info":[{"award-number":["IS\u2010BRC\u20101215\u201020018"]}],"id":[{"id":"10.13039\/100019418","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100012041","name":"Versus Arthritis","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100012041","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100011705","name":"MQ Mental Health Research","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011705","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bpspsychub.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["British J Health Psychol"],"published-print":{"date-parts":[[2025,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>This study aims to explore patients' and clinicians' understanding and experiences of refractory disease (RD) and persistent physical and emotional symptoms (PPES) in patients with inflammatory arthritis (IA), namely rheumatoid arthritis or polyarticular juvenile idiopathic arthritis from their perspectives through interviews and\/or focus groups.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A qualitative study was conducted, following a pragmatic epistemology approach with framework analysis employed.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Semi\u2010structured interviews or focus groups with IA patients (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200925) and multi\u2010disciplinary rheumatology HCPs (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200932) were conducted at one time point to obtain participants respective understanding and experiences of managing RD\/PPES, and its impact on the patient\u2010professional relationship.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Three key themes were identified from both patients and professionals' experiences of RD\/PPES: (1) relevant treatment experiences, (2) symptoms (with or without inflammation) and (3) impact: physical, psychological and social. These themes included 28 specific categories that would be considered as components characterizing RD\/PPES, most common to both patients and HCPs with six being patient\u2010specific and only one HCP\u2010specific. The specific biopsychosocial symptoms and impacts of RD\/PPES pertain to pain, fatigue, stiffness, joint involvement and physical, psychological and social functioning and quality of life, covering disease\u2010related distress, mobility and independence. Wider influential factors such as comorbidities, non\u2010adherence, health\/medication beliefs and behaviours and social support were also identified.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Common persistent symptoms that have both mental and physical impact characterize RD\/PPES in IA and therefore a more integrated holistic approach to treatment is needed from multi\u2010disciplinary HCPs, including health psychologists.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/bjhp.12780","type":"journal-article","created":{"date-parts":[[2025,1,8]],"date-time":"2025-01-08T07:00:34Z","timestamp":1736319634000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Characteristics of refractory disease and persistent symptoms in inflammatory arthritis: Qualitative framework analysis of interviews with patients and health care professionals"],"prefix":"10.1111","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9402-9669","authenticated-orcid":false,"given":"Hema","family":"Chaplin","sequence":"first","affiliation":[{"name":"Health Psychology Section Institute of Psychiatry, Psychology and Neuroscience, King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carol","family":"Simpson","sequence":"additional","affiliation":[{"name":"Centre for Rheumatic Diseases, Department of Inflammation Biology King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kate","family":"Wilkins","sequence":"additional","affiliation":[{"name":"Centre for Rheumatic Diseases, Department of Inflammation Biology King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica","family":"Meehan","sequence":"additional","affiliation":[{"name":"Health Psychology Section Institute of Psychiatry, Psychology and Neuroscience, King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nora","family":"Ng","sequence":"additional","affiliation":[{"name":"Guy's and St Thomas' NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Galloway","sequence":"additional","affiliation":[{"name":"Centre for Rheumatic Diseases, Department of Inflammation Biology King's College London  London UK"},{"name":"King's College Hospital NHS Foundation Trust  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ian C.","family":"Scott","sequence":"additional","affiliation":[{"name":"Primary Care Centre Versus Arthritis, School of Medicine Keele University  Keele UK"},{"name":"Haywood Academic Rheumatology Centre, Haywood Hospital, Midlands Partnership University NHS Foundation Trust  Stoke\u2010on\u2010Trent UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Debajit","family":"Sen","sequence":"additional","affiliation":[{"name":"University College London Hospitals NHS Foundation Trust  London UK"},{"name":"Versus Arthritis Centre for Adolescent Rheumatology University College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Tattersall","sequence":"additional","affiliation":[{"name":"Sheffield Teaching Hospitals NHS Foundation Trust  Sheffield UK"},{"name":"Barbara Ansell National Network for Adolescent and Young Adult Rheumatology  UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rona","family":"Moss\u2010Morris","sequence":"additional","affiliation":[{"name":"Health Psychology Section Institute of Psychiatry, Psychology and Neuroscience, King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Heidi","family":"Lempp","sequence":"additional","affiliation":[{"name":"Centre for Rheumatic Diseases, Department of Inflammation Biology King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1714-9963","authenticated-orcid":false,"given":"Sam","family":"Norton","sequence":"additional","affiliation":[{"name":"Health Psychology Section Institute of Psychiatry, Psychology and Neuroscience, King's College London  London UK"},{"name":"Centre for Rheumatic Diseases, Department of Inflammation Biology King's College London  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2025,1,8]]},"reference":[{"key":"e_1_2_13_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11135\u2010011\u20109600\u20104"},{"key":"e_1_2_13_3_1","unstructured":"BANNAR. (2017).Barbara Ansell National Network for Adolescent and young adult Rheumatology (BANNAR) statement of understanding of current clinical practice for biologic and biosimilar use in JIA in the UK.http:\/\/bannar.org.uk\/default%20documents\/BANNAR%20statement%20of%20understanding%20of%20current%20clinical%20practice%20forbiologic%20and%20biosimilar%20use%20in%20JIA%20in%20the%20UK%20due%20review%20Dec%202018.pdf"},{"key":"e_1_2_13_4_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0114350"},{"key":"e_1_2_13_5_1","unstructured":"British Society of Rheumatology. (2021).Rheumatology workforce: A crisis in numbers.https:\/\/rheumatology.org.uk\/Portals\/0\/Documents\/Policy\/Reports\/BSR\u2010workforce\u2010report\u2010crisis\u2010numbers.pdf"},{"key":"e_1_2_13_6_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6999.251"},{"key":"e_1_2_13_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102017\u2010212862"},{"key":"e_1_2_13_8_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41584\u2010020\u201000541\u20107"},{"key":"e_1_2_13_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/psy.0000000000001076"},{"key":"e_1_2_13_10_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0289760"},{"key":"e_1_2_13_11_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keab237"},{"key":"e_1_2_13_12_1","doi-asserted-by":"publisher","DOI":"10.1093\/rap\/rkae076"},{"key":"e_1_2_13_13_1","doi-asserted-by":"publisher","DOI":"10.5455\/apr.031720141940"},{"key":"e_1_2_13_14_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102014\u2010205636"},{"key":"e_1_2_13_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471\u20102474\u201015\u2010108"},{"key":"e_1_2_13_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.11407"},{"key":"e_1_2_13_17_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471\u20102288\u201013\u2010117"},{"key":"e_1_2_13_18_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kez497"},{"key":"e_1_2_13_19_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen\u20102016\u2010012331"},{"key":"e_1_2_13_20_1","doi-asserted-by":"publisher","DOI":"10.1027\/1016\u20109040\/a000353"},{"key":"e_1_2_13_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD010208.pub2"},{"key":"e_1_2_13_22_1","doi-asserted-by":"publisher","DOI":"10.3102\/0013189x033007014"},{"key":"e_1_2_13_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/msc.1555"},{"key":"e_1_2_13_24_1","doi-asserted-by":"publisher","DOI":"10.1054\/math.2001.0426"},{"key":"e_1_2_13_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365\u20102648.2007.04559.x"},{"key":"e_1_2_13_26_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.3578"},{"key":"e_1_2_13_27_1","doi-asserted-by":"publisher","DOI":"10.1186\/1471\u20102474\u201013\u2010200"},{"key":"e_1_2_13_28_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10865\u2010016\u20109782\u20102"},{"key":"e_1_2_13_29_1","doi-asserted-by":"publisher","DOI":"10.1037\/amp0000151"},{"key":"e_1_2_13_30_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_13_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2014.05.001"},{"key":"e_1_2_13_32_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23540"},{"key":"e_1_2_13_33_1","doi-asserted-by":"publisher","DOI":"10.1002\/msc.1136"},{"key":"e_1_2_13_34_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732314563489"},{"key":"e_1_2_13_35_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjhp.12072"},{"key":"e_1_2_13_36_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102020\u2010217344"},{"key":"e_1_2_13_37_1","unstructured":"National Audit Office. (2009).Services for people with rheumatoid arthritis.https:\/\/www.nao.org.uk\/report\/services\u2010for\u2010people\u2010with\u2010rheumatoid\u2010arthritis\/"},{"key":"e_1_2_13_38_1","article-title":"Rheumatoid arthritis in adults: Management","author":"NICE","year":"2009","journal-title":"Clinical Guideline"},{"key":"e_1_2_13_39_1","article-title":"Abatacept, adalimumab, etanercept and tocilizumab for treating juvenile idiopathic arthritis","author":"NICE","year":"2015","journal-title":"Technology Appraisal Guidance"},{"key":"e_1_2_13_40_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13075\u2010016\u20101151\u20106"},{"key":"e_1_2_13_41_1","doi-asserted-by":"publisher","DOI":"10.1097\/acm.0000000000000388"},{"key":"e_1_2_13_42_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10488\u2010013\u20100528\u2010y"},{"key":"e_1_2_13_43_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjhp.12644"},{"key":"e_1_2_13_44_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.autrev.2011.04.023"},{"key":"e_1_2_13_45_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102018\u2010213030"},{"volume-title":"Theory at a glance: A guide for health promotion practice","year":"2005","author":"Rimer B. K.","key":"e_1_2_13_46_1"},{"key":"e_1_2_13_47_1","doi-asserted-by":"publisher","DOI":"10.4324\/9780203413081_chapter_9"},{"key":"e_1_2_13_48_1","doi-asserted-by":"publisher","DOI":"10.1093\/eurjcn\/zvab038"},{"key":"e_1_2_13_49_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40271\u2010015\u20100130\u20103"},{"key":"e_1_2_13_50_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.41461"},{"key":"e_1_2_13_51_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjhp.12393"},{"key":"e_1_2_13_52_1","doi-asserted-by":"publisher","DOI":"10.1186\/s41927\u2010021\u201000220\u20104"},{"key":"e_1_2_13_53_1","doi-asserted-by":"publisher","DOI":"10.1186\/ar578"},{"key":"e_1_2_13_54_1","doi-asserted-by":"publisher","DOI":"10.1136\/ard.2009.123919"},{"issue":"2","key":"e_1_2_13_55_1","first-page":"72","article-title":"Framework analysis: A qualitative methodology for applied policy research","volume":"4","author":"Srivastava A.","year":"2009","journal-title":"Journal of Administration and Governance"},{"key":"e_1_2_13_56_1","doi-asserted-by":"publisher","DOI":"10.3310\/hta20350"},{"key":"e_1_2_13_57_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis\u20102013\u2010204798"},{"key":"e_1_2_13_58_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/ken323"},{"key":"e_1_2_13_59_1","doi-asserted-by":"publisher","DOI":"10.1590\/S0482-50042009000400013"},{"issue":"10","key":"e_1_2_13_60_1","first-page":"2016","article-title":"Minimal disease activity for rheumatoid arthritis: A preliminary definition","volume":"32","author":"Wells G. A.","year":"2005","journal-title":"The Journal of Rheumatology"},{"key":"e_1_2_13_61_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13075\u2010020\u201002179\u2010y"},{"volume-title":"Minutes from ARUK clinical study group refractory disease workshop: Prevalence of refractory disease in the UK","year":"2015","author":"Young A.","key":"e_1_2_13_62_1"}],"container-title":["British Journal of Health Psychology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/bpspsychub.onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/bjhp.12780","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,30]],"date-time":"2025-10-30T05:00:15Z","timestamp":1761800415000},"score":1,"resource":{"primary":{"URL":"https:\/\/bpspsychub.onlinelibrary.wiley.com\/doi\/10.1111\/bjhp.12780"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,8]]},"references-count":61,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025,2]]}},"alternative-id":["10.1111\/bjhp.12780"],"URL":"https:\/\/doi.org\/10.1111\/bjhp.12780","archive":["Portico"],"relation":{},"ISSN":["1359-107X","2044-8287"],"issn-type":[{"type":"print","value":"1359-107X"},{"type":"electronic","value":"2044-8287"}],"subject":[],"published":{"date-parts":[[2025,1,8]]},"assertion":[{"value":"2023-10-15","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2024-12-20","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-01-08","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e12780"}}