{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T22:03:41Z","timestamp":1780092221958,"version":"3.54.0"},"reference-count":101,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2026,2,13]],"date-time":"2026-02-13T00:00:00Z","timestamp":1770940800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000862","name":"Sir Halley Stewart Trust","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000862","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100000835","name":"University of Bath","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000835","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,5,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>We identified and evaluated measures of identity used with adolescents\/young adults aged 16\u201324\u2009years living with long-term physical health conditions (LTC-P), focusing on the conceptualization, development, and psychometric properties of measures. Review funded by Sir Halley Stewart Trust and the University of Bath. Review protocol: https:\/\/osf.io\/bhkze.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Method<\/jats:title>\n                    <jats:p>Five databases (APA PsychNET, PubMed, Web of Science, SCOPUS, and CINAHL) were searched. Studies were included if they were peer-reviewed, reported participants aged 16\u201324 years with LTC-P, and used a quantitative identity measure. Psychometric properties and risk of bias were evaluated using Consensus-Based Standards for the Selection of Health Measurement Instruments V1 (COSMIN) quality criteria, and content validity was reviewed narratively. Data analysis and synthesis followed COSMIN methodology for reviews.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thirty-seven papers met inclusion criteria, involving 9,486 participants and 16 identity measures. Across the papers, identity was defined and conceptualized in varied ways. Only three measures, the Illness Identity Questionnaire (IIQ), Dimensions of Identity Development Scale (DIDS), and Identity Motives Scale (IMS), were used in multiple studies and assessed for psychometric quality. Evaluated properties included structural validity, internal consistency, measurement invariance, and construct validity. The IIQ and DIDS were tentatively recommended for use. The IMS was rated as needing further validation due to limited content validity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The IIQ and DIDS may be appropriate when their conceptual focus aligns with research objectives. Remaining measures should be used cautiously; many lack developmental or condition-specific relevance. Future identity measure development should integrate lived experience, expert input, and rigorous psychometric testing to ensure tools are both meaningful and fit for purpose in target populations.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/jpepsy\/jsag001","type":"journal-article","created":{"date-parts":[[2026,1,5]],"date-time":"2026-01-05T12:23:11Z","timestamp":1767615791000},"page":"412-437","source":"Crossref","is-referenced-by-count":0,"title":["Measures of identity in adolescents\/young adults with long-term physical health conditions: a systematic review"],"prefix":"10.1093","volume":"51","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-2897-2701","authenticated-orcid":false,"given":"Tessa","family":"Rugg","sequence":"first","affiliation":[{"name":"Department of Psychology, University of Bath , Bath,","place":["United Kingdom"]},{"name":"Centre for Pain Research, University of Bath , Bath,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7355-0706","authenticated-orcid":false,"given":"Line","family":"Caes","sequence":"additional","affiliation":[{"name":"Division of Psychology, Faculty of Natural Science, University of Stirling , Stirling,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher","family":"Eccleston","sequence":"additional","affiliation":[{"name":"Centre for Pain Research, University of Bath , Bath,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5226-9878","authenticated-orcid":false,"given":"Bernie","family":"Carter","sequence":"additional","affiliation":[{"name":"Faculty of Health, Social Care and Medicine, Edge Hill University , Ormskirk,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8461-4151","authenticated-orcid":false,"given":"Jeremy","family":"Gauntlett-Gilbert","sequence":"additional","affiliation":[{"name":"Bath Centre for Pain Services, Royal United Hospital , Bath,","place":["United Kingdom"]},{"name":"Centre for Health and Clinical Research, University of the West of England , Bristol,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4965-3259","authenticated-orcid":false,"given":"Clare E","family":"Pain","sequence":"additional","affiliation":[{"name":"Department of Paediatric Rheumatology, Alder Hey Children\u2019s NHS Foundation Trust , Liverpool,","place":["United Kingdom"]},{"name":"Institute of Life Course and Medical Sciences, University of Liverpool , Liverpool,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1595-5574","authenticated-orcid":false,"given":"Abbie","family":"Jordan","sequence":"additional","affiliation":[{"name":"Department of Psychology, University of Bath , Bath,","place":["United Kingdom"]},{"name":"Centre for Pain Research, University of Bath , Bath,","place":["United Kingdom"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,2,13]]},"reference":[{"key":"2026052917570751100_jsag001-B1","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1007\/BF02087622","article-title":"Toward the development of an objective assessment of ego-identity status","volume":"8","author":"Adams","year":"1979","journal-title":"Journal of Youth and Adolescence"},{"key":"2026052917570751100_jsag001-B2","doi-asserted-by":"publisher","first-page":"99","DOI":"10.1016\/j.adolescence.2019.01.003","article-title":"Further insight into adolescent personal identity statuses: Differences based on self-esteem, family climate, and family communication","volume":"71","author":"Albert Sznitman","year":"2019","journal-title":"Journal of Adolescence"},{"key":"2026052917570751100_jsag001-B3","doi-asserted-by":"publisher","first-page":"1982","DOI":"10.1111\/epi.13215","article-title":"Altered self-identity and autobiographical memory in epilepsy","volume":"56","author":"Allebone","year":"2015","journal-title":"Epilepsia"},{"key":"2026052917570751100_jsag001-B4","doi-asserted-by":"publisher","first-page":"2005","DOI":"10.1111\/jan.14404","article-title":"A systematic review of the impact of chronic pain on adolescents\u2019 school functioning and school personnel responses to managing pain in the schools","volume":"76","author":"Alsaggaf","year":"2020","journal-title":"Journal of Advanced Nursing"},{"key":"2026052917570751100_jsag001-B5","doi-asserted-by":"publisher","first-page":"779","DOI":"10.3390\/jcm9030779","article-title":"Assessment of the psychological situation in adults with congenital heart disease","volume":"9","author":"Andonian","year":"2020","journal-title":"Journal of Clinical Medicine"},{"key":"2026052917570751100_jsag001-B6","doi-asserted-by":"publisher","first-page":"45","DOI":"10.4103\/hm.hm_32_21","article-title":"Psychological well-being in adults with congenital heart disease: Testing the predictive value of illness identity","volume":"5","author":"Andonian","year":"2021","journal-title":"Heart and Mind"},{"key":"2026052917570751100_jsag001-B700","doi-asserted-by":"publisher","first-page":"334","DOI":"10.1016\/j.ijcard.2014.11.084","article-title":"Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS): Rationale, design, and methods","volume":"179","author":"International Society for Adult Congenital Heart Disease (ISACHD)","year":"2015","journal-title":"International Journal of Cardiology"},{"key":"2026052917570751100_jsag001-B7","doi-asserted-by":"publisher","first-page":"247","DOI":"10.1080\/15283488.2021.1919115","article-title":"Perceived severity of chronic illness diagnosis and psychological well-being: Exploring the multiplicity and dimensions of perceived identity change","volume":"22","author":"April","year":"2022","journal-title":"Identity"},{"key":"2026052917570751100_jsag001-B8","doi-asserted-by":"publisher","first-page":"469","DOI":"10.1037\/0003-066X.55.5.469","article-title":"Emerging adulthood: A theory of development from the late teens through the twenties","volume":"55","author":"Arnett","year":"2000","journal-title":"The American Psychologist"},{"key":"2026052917570751100_jsag001-B3270805","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1006\/jado.1995.1012","article-title":"Development and preliminary validation of the Ego Identity ProcessQuestionnaire","volume":"18","author":"Balistreri","year":"1995","journal-title":"Journal of Adolescence"},{"issue":"2","key":"2026052917570751100_jsag001-B114033674","doi-asserted-by":"publisher","first-page":"183","DOI":"10.1177\/074355488612005","article-title":"A revision of theextended version of the objective measure of ego identity status: An identityinstrument for use with late adolescents","volume":"1","author":"Bennion","year":"1986","journal-title":"Journal of Adolescentresearch"},{"key":"2026052917570751100_jsag001-B9","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1016\/j.ppedcard.2018.05.001","article-title":"Psychological impact of sports restriction in asymptomatic adolescents with hypertrophic cardiomyopathy, dilated cardiomyopathy, and long QT syndrome","volume":"49","author":"Berg","year":"2018","journal-title":"Progress in Pediatric Cardiology"},{"key":"2026052917570751100_jsag001-B10","doi-asserted-by":"publisher","first-page":"518","DOI":"10.1002\/nur.10011","article-title":"Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale","volume":"24","author":"Berger","year":"2001","journal-title":"Research in Nursing & Health"},{"key":"2026052917570751100_jsag001-B11","doi-asserted-by":"publisher","first-page":"39","DOI":"10.1006\/drev.2000.0514","article-title":"Determinants and mechanisms in ego identity development: A review and synthesis","volume":"21","author":"Bosma","year":"2001","journal-title":"Developmental Review"},{"key":"2026052917570751100_jsag001-B12","doi-asserted-by":"publisher","first-page":"908","DOI":"10.1111\/jora.12678","article-title":"Dynamics of identity development in adolescence: A decade in review","volume":"31","author":"Branje","year":"2021","journal-title":"Journal of Research on Adolescence: The Official Journal of the Society for Research on Adolescence"},{"key":"2026052917570751100_jsag001-B13","doi-asserted-by":"publisher","first-page":"850","DOI":"10.1080\/09540121.2019.1659914","article-title":"The role of social support in moderating the relationship between HIV centrality, internalised stigma and psychological distress for people living with HIV","volume":"32","author":"Brener","year":"2020","journal-title":"AIDS Care"},{"key":"2026052917570751100_jsag001-B2758381","doi-asserted-by":"publisher","first-page":"1166","DOI":"10.1080\/09540121.2012.752784","article-title":"Experiences of HIV stigma: The role of visible symptoms, HIV centrality and community attachment for people living with HIV","volume":"25","author":"Brener","year":"2013","journal-title":"AIDS Care"},{"key":"2026052917570751100_jsag001-B14","doi-asserted-by":"publisher","first-page":"277","DOI":"10.1007\/s10902-016-9818-x","article-title":"Depression, positive and negative affect, optimism and health-related quality of life in recently diagnosed multiple sclerosis patients: The role of identity, sense of coherence, and self-efficacy","volume":"19","author":"Calandri","year":"2018","journal-title":"Journal of Happiness Studies"},{"key":"2026052917570751100_jsag001-B15","doi-asserted-by":"publisher","first-page":"72","DOI":"10.1016\/j.dhjo.2018.07.008","article-title":"Young adults\u2019 adjustment to a recent diagnosis of multiple sclerosis: The role of identity satisfaction and self-efficacy","volume":"12","author":"Calandri","year":"2019","journal-title":"Disability and Health Journal"},{"key":"2026052917570751100_jsag001-B16","doi-asserted-by":"publisher","first-page":"589815","DOI":"10.3389\/fpsyg.2020.589815","article-title":"The role of identity motives on quality of life and depressive symptoms: A comparison between young adults with multiple sclerosis and healthy peers","volume":"11","author":"Calandri","year":"2020","journal-title":"Frontiers in Psychology"},{"key":"2026052917570751100_jsag001-B17","doi-asserted-by":"publisher","first-page":"639","DOI":"10.1016\/j.jpag.2020.07.006","article-title":"From engulfment to enrichment: Associations between illness representations, self-concept, and psychological adjustment in Mayer-Rokitansky-K\u00fcster-Hauser syndrome","volume":"33","author":"Carroll","year":"2020","journal-title":"Journal of Pediatric and Adolescent Gynecology"},{"key":"2026052917570751100_jsag001-B18","doi-asserted-by":"publisher","first-page":"282","DOI":"10.1080\/15283488.2017.1379908","article-title":"How self-perceptions of identity change in person, role, and social identities relate to depression","volume":"17","author":"Carter","year":"2017","journal-title":"Identity"},{"key":"2026052917570751100_jsag001-B19","volume-title":"HIV-positive identity and health behaviors in adolescents living with HIV","author":"Carter","year":"2005"},{"key":"2026052917570751100_jsag001-B20","doi-asserted-by":"crossref","first-page":"168","DOI":"10.1111\/1467-9566.ep10491512","article-title":"Loss of self: A fundamental form of suffering in the chronically ill","volume":"5","author":"Charmaz","year":"1983","journal-title":"Sociology of Health & Illness"},{"key":"2026052917570751100_jsag001-B21","doi-asserted-by":"publisher","first-page":"657","DOI":"10.1111\/j.1533-8525.1995.tb00459.x","article-title":"The body, identity, and self: Adapting to impairment","volume":"36","author":"Charmaz","year":"1995","journal-title":"The Sociological Quarterly"},{"key":"2026052917570751100_jsag001-B22","doi-asserted-by":"publisher","first-page":"911","DOI":"10.1093\/jpepsy\/jsj115","article-title":"Introduction to special issue: Evidence-based assessment in pediatric psychology","volume":"33","author":"Cohen","year":"2008","journal-title":"Journal of Pediatric Psychology"},{"key":"2026052917570751100_jsag001-B23","doi-asserted-by":"crossref","first-page":"672","DOI":"10.1177\/1049732316628835","article-title":"Developing a personal and social identity with type 1 diabetes during adolescence: A hypothesis generative study","volume":"26","author":"Commissariat","year":"2016","journal-title":"Qualitative Health Research"},{"key":"2026052917570751100_jsag001-B24","doi-asserted-by":"publisher","first-page":"53","DOI":"10.1111\/pedi.12932","article-title":"Identity and treatment adherence in predominantly ethnic minority teens and young adults with type 1 diabetes","volume":"21","author":"Commissariat","year":"2020","journal-title":"Pediatric Diabetes"},{"key":"2026052917570751100_jsag001-B25","doi-asserted-by":"publisher","first-page":"66","DOI":"10.1016\/j.jcjd.2022.08.007","article-title":"Assessing incorporation of type 1 diabetes into identity: Validation of the accepting diabetes and personal treatment (ADAPT) survey in teens and young adults","volume":"47","author":"Commissariat","year":"2023","journal-title":"Canadian Journal of Diabetes"},{"key":"2026052917570751100_jsag001-B808029360","year":"2024"},{"key":"2026052917570751100_jsag001-B26","doi-asserted-by":"publisher","first-page":"4062","DOI":"10.1111\/jocn.15006","article-title":"Healthcare transition for adolescents and young adults with long-term conditions: Qualitative study of patients, parents and healthcare professionals\u2019 experiences","volume":"28","author":"Coyne","year":"2019","journal-title":"Journal of Clinical Nursing"},{"key":"2026052917570751100_jsag001-B27","doi-asserted-by":"publisher","first-page":"145","DOI":"10.1111\/cdep.12226","article-title":"Identity formation in adolescence: The dynamic of forming and consolidating identity commitments","volume":"11","author":"Crocetti","year":"2017","journal-title":"Child Development Perspectives"},{"key":"2026052917570751100_jsag001-B28","doi-asserted-by":"publisher","first-page":"694","DOI":"10.1080\/09540121.2010.532539","article-title":"\u201cHIV isn\u2019t me\u2026\u201d: HIV+ adolescents\u2019 experiences in a positive context of support and treatment","volume":"23","author":"Di Risio","year":"2011","journal-title":"AIDS Care"},{"key":"2026052917570751100_jsag001-B29","doi-asserted-by":"publisher","first-page":"41","DOI":"10.1007\/s10461-014-0758-3","article-title":"HIV stigma and physical health symptoms: Do social support, adaptive coping, and\/or identity centrality act as resilience resources?","volume":"19","author":"Earnshaw","year":"2015","journal-title":"AIDS and Behavior"},{"key":"2026052917570751100_jsag001-B30","doi-asserted-by":"publisher","first-page":"765","DOI":"10.1016\/j.ejpain.2007.11.002","article-title":"Adolescent social development and chronic pain","volume":"12","author":"Eccleston","year":"2008","journal-title":"European Journal of Pain (London, England)"},{"key":"2026052917570751100_jsag001-B31","first-page":"397)","volume-title":"Childhood and society","author":"Erikson","year":"1950"},{"key":"2026052917570751100_jsag001-B32","volume-title":"Identity: Youth and crisis","author":"Erikson","year":"1968"},{"key":"2026052917570751100_jsag001-B33","doi-asserted-by":"publisher","first-page":"370","DOI":"10.1177\/1948550617693063","article-title":"Construct validation in social and personality research: Current practice and recommendations","volume":"8","author":"Flake","year":"2017","journal-title":"Social Psychological and Personality Science"},{"key":"2026052917570751100_jsag001-B34","doi-asserted-by":"publisher","first-page":"2011","DOI":"10.1037\/dev0000299","article-title":"An integrated developmental model for studying identity content in context","volume":"53","author":"Galliher","year":"2017","journal-title":"Developmental Psychology"},{"key":"2026052917570751100_jsag001-B35","doi-asserted-by":"publisher","first-page":"203","DOI":"10.1093\/jpepsy\/12.2.203","article-title":"Ego identity development of adolescents with cancer","volume":"12","author":"Gavaghan","year":"1987","journal-title":"Journal of Pediatric Psychology"},{"key":"2026052917570751100_jsag001-B36","doi-asserted-by":"publisher","first-page":"983","DOI":"10.1177\/13591045221125631","article-title":"Illness perceptions and illness identity in adolescents and emerging adults with neuromuscular disorders","volume":"28","author":"Geuens","year":"2023","journal-title":"Clinical Child Psychology and Psychiatry"},{"key":"2026052917570751100_jsag001-B37","doi-asserted-by":"publisher","first-page":"748","DOI":"10.1007\/s10461-012-0338-3","article-title":"Identity-related growth and loss in a sample of HIV-positive gay and bisexual men: Initial scale development and psychometric evaluation","volume":"17","author":"Golub","year":"2013","journal-title":"AIDS and Behavior"},{"key":"2026052917570751100_jsag001-B38","doi-asserted-by":"publisher","first-page":"271","DOI":"10.1080\/03630242.2019.1626789","article-title":"Adjustment to multiple sclerosis and identity satisfaction among newly diagnosed women: What role does motherhood play?","volume":"60","author":"Graziano","year":"2020","journal-title":"Women & Health"},{"key":"2026052917570751100_jsag001-B31869927","doi-asserted-by":"publisher","first-page":"419","DOI":"10.1007\/BF02088639","article-title":"Development of an objective measure to assess ego identity in adolescence: Validation and replication","volume":"13","author":"Grotevant","year":"1984","journal-title":"Journal of Youth and Adolescence"},{"key":"2026052917570751100_jsag001-B39","doi-asserted-by":"publisher","first-page":"128","DOI":"10.1542\/peds.2014-2105","article-title":"Adolescent health and adult education and employment: A systematic review","volume":"136","author":"Hale","year":"2015","journal-title":"Pediatrics"},{"key":"2026052917570751100_jsag001-B40","doi-asserted-by":"publisher","first-page":"363","DOI":"10.1016\/S0304-3959(03)00251-3","article-title":"Role loss and emotional adjustment in chronic pain","volume":"105","author":"Harris","year":"2003","journal-title":"Pain"},{"key":"2026052917570751100_jsag001-B378748246","doi-asserted-by":"publisher","first-page":"e20","DOI":"10.1097\/DBP.0000000000000956","article-title":"Psychosocial adjustment in emerging adults with and without Spina Bifida: A 14-year follow-up study","volume":"43","author":"Holmbeck","year":"2022","journal-title":"J Devbehav Pediatr"},{"key":"2026052917570751100_jsag001-B42","doi-asserted-by":"publisher","first-page":"355","DOI":"10.1006\/jado.2002.0480","article-title":"Identity development in adolescents living with HIV","volume":"25","author":"Hosek","year":"2002","journal-title":"Journal of Adolescence"},{"key":"2026052917570751100_jsag001-B43","doi-asserted-by":"publisher","first-page":"e09109","DOI":"10.1016\/j.heliyon.2022.e09109","article-title":"Cultural adaption and psychometric validation of the Danish Illness Identity Questionnaire (IIQ-DK) in adolescents and emerging adults with type 1 diabetes","volume":"8","author":"Ingersgaard","year":"2022","journal-title":"Heliyon"},{"key":"2026052917570751100_jsag001-B44","doi-asserted-by":"publisher","first-page":"2028","DOI":"10.1007\/s10964-017-0656-x","article-title":"\u201cI can\u2019t Take Hold of Some Kind of a Life\u201d: The role of social connectedness and confidence in engaging \u201cLost\u201d adolescents with their lives","volume":"46","author":"Ja","year":"2017","journal-title":"Journal of Youth and Adolescence"},{"key":"2026052917570751100_jsag001-B3449375","doi-asserted-by":"publisher","first-page":"932","DOI":"10.1097\/AJP.0000000000000880","article-title":"Loss-adjusting: Young People's Constructions of a Future Living With Complex Regional Pain Syndrome","volume":"36","author":"Jones","year":"2020","journal-title":"The Clinical Journal of Pain"},{"key":"2026052917570751100_jsag001-B45","doi-asserted-by":"publisher","first-page":"e678","DOI":"10.1097\/PR9.0000000000000678","article-title":"A developmental arrest? Interruption and identity in adolescent chronic pain","volume":"3","author":"Jordan","year":"2018","journal-title":"Pain Reports"},{"key":"2026052917570751100_jsag001-B46","doi-asserted-by":"publisher","first-page":"216","DOI":"10.1111\/cch.12638","article-title":"\u201cI\u2019m not what I used to be\u201d: A qualitative study exploring how young people experience being diagnosed with a chronic illness","volume":"45","author":"Kirk","year":"2019","journal-title":"Child: Care, Health and Development"},{"key":"2026052917570751100_jsag001-B47","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1207\/s1532706xid0601_6","article-title":"Identity development-in-context: The school as an important context for identity development","volume":"6","author":"Lannegrand-Willems","year":"2006","journal-title":"Identity"},{"key":"2026052917570751100_jsag001-B48","doi-asserted-by":"publisher","first-page":"361","DOI":"10.1007\/s10880-012-9344-x","article-title":"Assessment of identity and quality of life in diabetic and renal transplant adolescents in comparison to healthy adolescents","volume":"20","author":"Lugasi","year":"2013","journal-title":"Journal of Clinical Psychology in Medical Settings"},{"key":"2026052917570751100_jsag001-B49","doi-asserted-by":"publisher","first-page":"605","DOI":"10.1007\/s10964-005-8949-x","article-title":"Identity statuses based on 4 rather than 2 identity dimensions: Extending and refining Marcia\u2019s paradigm","volume":"34","author":"Luyckx","year":"2005","journal-title":"Journal of Youth and Adolescence"},{"key":"2026052917570751100_jsag001-B50","doi-asserted-by":"publisher","first-page":"48","DOI":"10.1016\/j.yebeh.2017.12.036","article-title":"Illness identity in young adults with refractory epilepsy","volume":"80","author":"Luyckx","year":"2018","journal-title":"Epilepsy & Behavior: E&B"},{"key":"2026052917570751100_jsag001-B51","doi-asserted-by":"publisher","first-page":"58","DOI":"10.1016\/j.jrp.2007.04.004","article-title":"Capturing ruminative exploration: Extending the four-dimensional model of identity formation in late adolescence","volume":"42","author":"Luyckx","year":"2008","journal-title":"Journal of Research in Personality"},{"key":"2026052917570751100_jsag001-B52","doi-asserted-by":"publisher","first-page":"970","DOI":"10.1002\/ejsp.669","article-title":"Accommodating a new identity: Possible selves, identity change and well-being across two life-transitions","volume":"40","author":"Manzi","year":"2010","journal-title":"European Journal of Social Psychology"},{"key":"2026052917570751100_jsag001-B53","doi-asserted-by":"publisher","first-page":"551","DOI":"10.1037\/h0023281","article-title":"Development and validation of ego-identity status","volume":"3","author":"Marcia","year":"1966","journal-title":"Journal of Personality and Social Psychology"},{"key":"2026052917570751100_jsag001-B54","doi-asserted-by":"publisher","first-page":"e42","DOI":"10.1097\/MPG.0000000000002946","article-title":"Illness identity in adolescents with celiac disease","volume":"72","author":"Meyer","year":"2021","journal-title":"Journal of Pediatric Gastroenterology and Nutrition"},{"key":"2026052917570751100_jsag001-B55","doi-asserted-by":"publisher","first-page":"1171","DOI":"10.1007\/s11136-017-1765-4","article-title":"COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures","volume":"27","author":"Mokkink","year":"2018","journal-title":"Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation"},{"key":"2026052917570751100_jsag001-B56","doi-asserted-by":"publisher","first-page":"1","DOI":"10.3310\/hta23220","article-title":"Interventions to improve the mental health of children and young people with long-term physical conditions: Linked evidence syntheses","volume":"23","author":"Moore","year":"2019","journal-title":"Health Technology Assessment (Winchester, England)"},{"key":"2026052917570751100_jsag001-B57","doi-asserted-by":"publisher","first-page":"491","DOI":"10.1093\/eurjcn\/zvab117","article-title":"Absence from work or school in young adults with congenital heart disease: Is illness identity associated with absenteeism?","volume":"21","author":"Na","year":"2022","journal-title":"European Journal of Cardiovascular Nursing"},{"key":"2026052917570751100_jsag001-B58","author":"NHS England","year":"2024"},{"key":"2026052917570751100_jsag001-B59","doi-asserted-by":"publisher","first-page":"389","DOI":"10.1016\/j.childyouth.2014.10.017","article-title":"Improving practice: The importance of connections in establishing positive identity and meaning in the lives of vulnerable young people","volume":"47","author":"Noble-Carr","year":"2014","journal-title":"Children and Youth Services Review"},{"key":"2026052917570751100_jsag001-B60","doi-asserted-by":"publisher","first-page":"429","DOI":"10.1007\/s10880-018-9552-0","article-title":"Illness identity in adults with a chronic illness","volume":"25","author":"Oris","year":"2018","journal-title":"Journal of Clinical Psychology in Medical Settings"},{"key":"2026052917570751100_jsag001-B61","doi-asserted-by":"publisher","first-page":"757","DOI":"10.2337\/dc15-2559","article-title":"Illness identity in adolescents and emerging adults with type 1 diabetes: Introducing the illness identity questionnaire","volume":"39","author":"Oris","year":"2016","journal-title":"Diabetes Care"},{"key":"2026052917570751100_jsag001-B62","doi-asserted-by":"publisher","first-page":"239","DOI":"10.1093\/pm\/pnz173","article-title":"Persons with complex regional pain syndrome renegotiate social roles and intimacy: A qualitative study","volume":"21","author":"Packham","year":"2020","journal-title":"Pain Medicine (Malden, Mass.)"},{"key":"2026052917570751100_jsag001-B63","doi-asserted-by":"publisher","first-page":"n71","DOI":"10.1136\/bmj.n71","article-title":"The PRISMA 2020 statement: An updated guideline for reporting systematic reviews","volume":"372","author":"Page","year":"2021","journal-title":"BMJ (Clinical Research ed.)"},{"key":"2026052917570751100_jsag001-B1139046","doi-asserted-by":"publisher","first-page":"956","DOI":"10.1111\/bjhp.12584","article-title":"The relationship between illness identity and the self-management of Inflammatory Bowel Disease","volume":"27","author":"Peters","year":"2022","journal-title":"British Journal of Health Psychology"},{"key":"2026052917570751100_jsag001-B64","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1111\/cdep.12279","article-title":"The development of self and identity in adolescence: Neural evidence and implications for a value-based choice perspective on motivated behavior","volume":"12","author":"Pfeifer","year":"2018","journal-title":"Child Development Perspectives"},{"key":"2026052917570751100_jsag001-B65","doi-asserted-by":"publisher","first-page":"249","DOI":"10.1080\/1034912X.2015.1020922","article-title":"Solving developmental tasks in adolescents with a chronic physical illness or physical\/sensory disability: A meta-analysis","volume":"62","author":"Pinquart","year":"2015","journal-title":"International Journal of Disability, Development and Education"},{"key":"2026052917570751100_jsag001-B66","doi-asserted-by":"publisher","first-page":"55","DOI":"10.1002\/cd.23219998406","article-title":"Identity development and peer group participation","volume":"1999","author":"Pugh","year":"1999","journal-title":"New Directions for Child and Adolescent Development"},{"key":"2026052917570751100_jsag001-B67","doi-asserted-by":"publisher","first-page":"497","DOI":"10.1007\/s11136-020-02653-9","article-title":"Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: The role of disease severity, age of onset, and embarrassment of the condition","volume":"30","author":"Qualter","year":"2021","journal-title":"Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation"},{"key":"2026052917570751100_jsag001-B68","doi-asserted-by":"publisher","first-page":"634","DOI":"10.1037\/a0015815","article-title":"Living with a concealable stigmatized identity: The impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health","volume":"97","author":"Quinn","year":"2009","journal-title":"Journal of Personality and Social Psychology"},{"key":"2026052917570751100_jsag001-B27808762","doi-asserted-by":"publisher","first-page":"625","DOI":"10.1097\/DBP","article-title":"Identity dynamics and peer relationship quality in adolescents with a chronic disease: The sample case of congenital heart disease","volume":"33","author":"Rassart","year":"2012","journal-title":"Journal of Developmental and Behavioral Pediatrics : JDBP"},{"key":"2026052917570751100_jsag001-B69","doi-asserted-by":"publisher","first-page":"326","DOI":"10.1037\/hea0001063","article-title":"Illness identity and adjusting to type I diabetes: A four-wave longitudinal study","volume":"40","author":"Rassart","year":"2021","journal-title":"Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association"},{"key":"2026052917570751100_jsag001-B70","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1007\/s12529-022-10072-y","article-title":"Illness identity in inflammatory bowel disease","volume":"30","author":"Rassart","year":"2023","journal-title":"International Journal of Behavioral Medicine"},{"key":"2026052917570751100_jsag001-B3349730","doi-asserted-by":"publisher","first-page":"449","DOI":"10.1007\/s10964-019-01180-2","article-title":"The social context and illness identity in youth with type 1 diabetes: A three-wave longitudinal study","volume":"49","author":"Raymaekers","year":"2020","journal-title":"Journal of Youth and Adolescence"},{"key":"2026052917570751100_jsag001-B71","doi-asserted-by":"publisher","first-page":"2","DOI":"10.1186\/s41687-023-00540-8","article-title":"A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: A systematic review","volume":"7","author":"Rothmund","year":"2023","journal-title":"Journal of Patient-Reported Outcomes"},{"key":"2026052917570751100_jsag001-B72","doi-asserted-by":"publisher","first-page":"223","DOI":"10.1016\/S2352-4642","article-title":"The age of adolescence","volume":"2","author":"Sawyer","year":"2018","journal-title":"The Lancet. Child & Adolescent Health"},{"key":"2026052917570751100_jsag001-B6035313","doi-asserted-by":"publisher","first-page":"1335201","DOI":"10.3389\/fpsyg.2024.1335201","article-title":"Love beyond gluten: Self-esteem, illness identity, and social support in romantic rejection concerns among adolescents with celiac disease","volume":"15","author":"Shani","year":"2024","journal-title":"Frontiers in Psychology"},{"key":"2026052917570751100_jsag001-B73","doi-asserted-by":"publisher","first-page":"173","DOI":"10.1111\/papt.12265","article-title":"Are there reliable and valid measures of anxiety for people with psychosis? A systematic review of psychometric properties","volume":"94","author":"Smith","year":"2021","journal-title":"Psychology and Psychotherapy"},{"key":"2026052917570751100_jsag001-B74","doi-asserted-by":"publisher","first-page":"225","DOI":"10.1136\/archdischild-2022-324874","article-title":"School lives of adolescent school students living with chronic physical health conditions: A qualitative evidence synthesis","volume":"108","author":"Spencer","year":"2023","journal-title":"Archives of Disease in Childhood"},{"key":"2026052917570751100_jsag001-B75","doi-asserted-by":"publisher","first-page":"165","DOI":"10.1037\/rep0000126","article-title":"Developing a measure to assess identity reconstruction in patients with multiple sclerosis","volume":"62","author":"Stepleman","year":"2017","journal-title":"Rehabilitation Psychology"},{"key":"2026052917570751100_jsag001-B76","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1080\/15283488.2021.1947819","article-title":"Exploring exploration: Identity exploration in real-time interactions among peers","volume":"22","author":"Sugimura","year":"2022","journal-title":"Identity"},{"key":"2026052917570751100_jsag001-B77","first-page":"33","volume-title":"The social psychology of intergroup relations","author":"Tajfel","year":"1979"},{"key":"2026052917570751100_jsag001-B78","doi-asserted-by":"publisher","first-page":"34","DOI":"10.1016\/j.jclinepi.2006.03.012","article-title":"Quality criteria were proposed for measurement properties of health status questionnaires","volume":"60","author":"Terwee","year":"2007","journal-title":"Journal of Clinical Epidemiology"},{"key":"2026052917570751100_jsag001-B79","doi-asserted-by":"publisher","first-page":"213","DOI":"10.1007\/s10461-011-0071-3","article-title":"The role of multiple identities in adherence to medical appointments among gay\/bisexual male adolescents living with HIV","volume":"17","author":"Harper","year":"2013","journal-title":"AIDS and Behavior"},{"key":"2026052917570751100_jsag001-B80","doi-asserted-by":"publisher","first-page":"382","DOI":"10.1177\/0146167202286009","article-title":"Positive and negative effects of HIV infection in women with low socioeconomic resources","volume":"28","author":"Updegraff","year":"2002","journal-title":"Personality and Social Psychology Bulletin"},{"key":"2026052917570751100_jsag001-B53219338","doi-asserted-by":"publisher","first-page":"4743","DOI":"10.1111\/jan.14949","article-title":"Illness identity in adults with congenital heart disease: Longitudinal trajectories and associations with patient-reported outcomes and healthcare use","volume":"77","author":"Van Bulck","year":"2021","journal-title":"Journal of Advanced Nursing"},{"key":"2026052917570751100_jsag001-B1332059","doi-asserted-by":"publisher","first-page":"e008723","DOI":"10.1161\/JAHA.118.008723","article-title":"Illness identity: A novel predictor for healthcare use in adults with congenital heart disease","volume":"7","author":"Van Bulck","year":"2018","journal-title":"J Am Heart Assoc"},{"key":"2026052917570751100_jsag001-B81","doi-asserted-by":"publisher","first-page":"328","DOI":"10.1037\/hea0001366","article-title":"Personal and illness identity in youth with type 1 diabetes: Developmental trajectories and associations","volume":"43","author":"Vanderhaegen","year":"2024","journal-title":"Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association"},{"key":"2026052917570751100_jsag001-B82","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1007\/s10648-018-9457-3","article-title":"The role of school in adolescents\u2019 identity development. A literature review","volume":"31","author":"Verhoeven","year":"2019","journal-title":"Educational Psychology Review"},{"key":"2026052917570751100_jsag001-B4168292","doi-asserted-by":"publisher","first-page":"519","DOI":"10.1080\/13548506.2019.1653482","article-title":"Identity formation in adolescents and emerging adults with type 1 diabetes","volume":"25","author":"Verschueren","year":"2020","journal-title":"Psychology, Health & Medicine"},{"key":"2026052917570751100_jsag001-B83","doi-asserted-by":"crossref","DOI":"10.1017\/CBO9780511996214","volume-title":"Measurement in medicine: A practical guide","author":"Vet","year":"2011"},{"key":"2026052917570751100_jsag001-B84","doi-asserted-by":"publisher","first-page":"308","DOI":"10.1037\/0022-3514.90.2.308","article-title":"Beyond self-esteem: Influence of multiple motives on identity construction","volume":"90","author":"Vignoles","year":"2006","journal-title":"Journal of Personality and Social Psychology"},{"key":"2026052917570751100_jsag001-B85","doi-asserted-by":"publisher","first-page":"E15","DOI":"10.5888\/pcd22.240539","article-title":"Trends in multiple chronic conditions among US adults, by life stage, behavioral risk factor surveillance system, 2013\u20132023","volume":"22","author":"Watson","year":"2025","journal-title":"Preventing Chronic Disease"},{"key":"2026052917570751100_jsag001-B86","doi-asserted-by":"publisher","first-page":"431","DOI":"10.1080\/08870449608400270","article-title":"The illness perception questionnaire: A new method for assessing the cognitive representation of illness","volume":"11","author":"Weinman","year":"1996","journal-title":"Psychology & Health"},{"key":"2026052917570751100_jsag001-B87","doi-asserted-by":"publisher","first-page":"217","DOI":"10.1111\/1467-9566.ep11346888","article-title":"Reshaping of self: A pendular reconstruction of self and identity among adults with traumatic spinal cord injury","volume":"15","author":"Yoshida","year":"1993","journal-title":"Sociology of Health & Illness"}],"container-title":["Journal of Pediatric Psychology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jpepsy\/article-pdf\/51\/5\/412\/66892851\/jsag001.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jpepsy\/article-pdf\/51\/5\/412\/66892851\/jsag001.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,29]],"date-time":"2026-05-29T21:57:15Z","timestamp":1780091835000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jpepsy\/article\/51\/5\/412\/8482928"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2,13]]},"references-count":101,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2026,2,13]]},"published-print":{"date-parts":[[2026,5,1]]}},"URL":"https:\/\/doi.org\/10.1093\/jpepsy\/jsag001","relation":{},"ISSN":["0146-8693","1465-735X"],"issn-type":[{"value":"0146-8693","type":"print"},{"value":"1465-735X","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,5]]},"published":{"date-parts":[[2026,2,13]]}}}