{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T06:17:50Z","timestamp":1780553870985,"version":"3.54.1"},"reference-count":53,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2014,9,18]],"date-time":"2014-09-18T00:00:00Z","timestamp":1410998400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Patient"],"published-print":{"date-parts":[[2015,2]]},"DOI":"10.1007\/s40271-014-0085-9","type":"journal-article","created":{"date-parts":[[2014,9,17]],"date-time":"2014-09-17T17:08:07Z","timestamp":1410973687000},"page":"65-73","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":47,"title":["Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study"],"prefix":"10.1007","volume":"8","author":[{"given":"Maya","family":"Doyle","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2014,9,18]]},"reference":[{"issue":"2","key":"85_CR1","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1056\/NEJMra020552","volume":"347","author":"WA Gahl","year":"2002","unstructured":"Gahl WA, Thoene JG, Schneider JA. Cystinosis. N Engl J Med. 2002;347(2):111\u201321. doi: 10.1056\/NEJMra020552347\/2\/111 .","journal-title":"N Engl J Med"},{"key":"85_CR2","doi-asserted-by":"crossref","first-page":"1019","DOI":"10.1007\/978-3-540-76341-3_41","volume-title":"Pediatric nephrology","author":"WA Gahl","year":"2009","unstructured":"Gahl WA. Cystinosis. In: Avner E, Harmon W, Niaudet P, Yoshikawa N, editors. Pediatric nephrology. Springer: Berlin; 2009. p. 1019\u201338."},{"issue":"4","key":"85_CR3","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1016\/j.jpeds.2004.03.056","volume":"145","author":"R Kleta","year":"2004","unstructured":"Kleta R, Bernardini I, Ueda M, Varade WS, Phornphutkul C, Krasnewich D, et al. Long-term follow-up of well-treated nephropathic cystinosis patients. J Pediatr. 2004;145(4):555\u201360. doi: 10.1016\/j.jpeds.2004.03.056 .","journal-title":"J Pediatr"},{"issue":"2","key":"85_CR4","doi-asserted-by":"crossref","first-page":"254","DOI":"10.1007\/BF00860767","volume":"9","author":"JA Schneider","year":"1995","unstructured":"Schneider JA. Approval of cysteamine for patients with cystinosis. Pediatr Nephrol. 1995;9(2):254.","journal-title":"Pediatr Nephrol"},{"issue":"6","key":"85_CR5","doi-asserted-by":"crossref","first-page":"863","DOI":"10.1007\/s00467-007-0650-8","volume":"23","author":"G Nesterova","year":"2008","unstructured":"Nesterova G, Gahl WA. Nephropathic cystinosis: late complications of a multisystemic disease. Pediatr Nephrol. 2008;23(6):863\u201378. doi: 10.1007\/s00467-007-0650-8 .","journal-title":"Pediatr Nephrol"},{"issue":"1","key":"85_CR6","doi-asserted-by":"crossref","first-page":"51","DOI":"10.1007\/s00467-012-2242-5","volume":"28","author":"G Nesterova","year":"2013","unstructured":"Nesterova G, Gahl WA. Cystinosis: the evolution of a treatable disease. Pediatr Nephrol. 2013;28(1):51\u20139. doi: 10.1007\/s00467-012-2242-5 .","journal-title":"Pediatr Nephrol"},{"issue":"1","key":"85_CR7","doi-asserted-by":"crossref","first-page":"109","DOI":"10.1177\/0038038588022001007","volume":"22","author":"J Scott","year":"1988","unstructured":"Scott J. Social network analysis. Sociology. 1988;22(1):109\u201327. doi: 10.1177\/0038038588022001007 .","journal-title":"Sociology"},{"issue":"4","key":"85_CR8","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1053\/j.ackd.2007.04.007","volume":"14","author":"SD Cohen","year":"2007","unstructured":"Cohen SD, Sharma T, Acquaviva K, Peterson RA, Patel SS, Kimmel PL. Social support and chronic kidney disease: an update. Adv Chronic Kidney Dis. 2007;14(4):335\u201344. doi: 10.1053\/j.ackd.2007.04.007 .","journal-title":"Adv Chronic Kidney Dis"},{"issue":"6","key":"85_CR9","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1001\/jama.285.6.805-JMS0214-2-1","volume":"285","author":"M Patsos","year":"2001","unstructured":"Patsos M. MSJAMA: the Internet and medicine: building a community for patients with rare diseases. JAMA. 2001;285(6):805.","journal-title":"JAMA"},{"key":"85_CR10","doi-asserted-by":"crossref","unstructured":"Beall J. Internet resources in rare diseases. Health Care Internet. 2001;5(4):11-17. doi: 10.1300\/J138v05n04_02 .","DOI":"10.1300\/J138v05n04_02"},{"issue":"3","key":"85_CR11","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1007\/s11606-010-1526-3","volume":"26","author":"JA Greene","year":"2011","unstructured":"Greene JA, Choudhry NK, Kilabuk E, Shrank WH. Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med. 2011;26(3):287\u201392.","journal-title":"J Gen Intern Med"},{"issue":"1","key":"85_CR12","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1097\/00002820-200501000-00001","volume":"28","author":"EO Im","year":"2005","unstructured":"Im EO, Chee W, Tsai HM, Lin LC, Cheng CY. Internet cancer support groups: a feminist analysis. Cancer Nurs. 2005;28(1):1\u20137.","journal-title":"Cancer Nurs"},{"issue":"2","key":"85_CR13","doi-asserted-by":"crossref","first-page":"236","DOI":"10.1177\/1359105310371398","volume":"16","author":"L Elwell","year":"2011","unstructured":"Elwell L, Grogan S, Coulson N. Adolescents living with cancer the role of computer-mediated support groups. J Health Psychol. 2011;16(2):236\u201348.","journal-title":"J Health Psychol"},{"issue":"1","key":"85_CR14","doi-asserted-by":"crossref","first-page":"e10","DOI":"10.2196\/jmir.7.1.e10","volume":"7","author":"JN Lasker","year":"2005","unstructured":"Lasker JN, Sogolow ED, Sharim RR. The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailinglist. J Med Internet Res. 2005;7(1):e10. doi: 10.2196\/jmir.7.1.e10 .","journal-title":"J Med Internet Res"},{"issue":"4","key":"85_CR15","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1080\/08870446.2011.592981","volume":"27","author":"PK Mo","year":"2012","unstructured":"Mo PK, Coulson NS. Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV\/AIDS. Psychol Health. 2012;27(4):445\u201359.","journal-title":"Psychol Health"},{"issue":"2","key":"85_CR16","doi-asserted-by":"crossref","first-page":"173","DOI":"10.1016\/j.pec.2007.06.002","volume":"68","author":"NS Coulson","year":"2007","unstructured":"Coulson NS, Buchanan H, Aubeeluck A. Social support in cyberspace: a content analysis of communication within a Huntington\u2019s disease online support group. Patient Educ Couns. 2007;68(2):173\u20138. doi: 10.1016\/j.pec.2007.06.002 .","journal-title":"Patient Educ Couns"},{"issue":"4","key":"85_CR17","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1080\/07347330802359776","volume":"26","author":"A Werner-Lin","year":"2008","unstructured":"Werner-Lin A. Formal and informal support needs of young women with BRCA mutations. J Psychosoc Oncol. 2008;26(4):111\u201333.","journal-title":"J Psychosoc Oncol"},{"key":"85_CR18","unstructured":"Platten MJ (2012) Mental health, self-esteem and quality of life of adults with cystic fibrosis and their use of an online discussion forum. Dissertation, University of Edinburgh"},{"issue":"5","key":"85_CR19","doi-asserted-by":"crossref","first-page":"1867","DOI":"10.1016\/j.chb.2008.02.004","volume":"24","author":"A Barak","year":"2008","unstructured":"Barak A, Boniel-Nissim M, Suler J. Fostering empowerment in online support groups. Comput Human Behav. 2008;24(5):1867\u201383. doi: 10.1016\/j.chb.2008.02.004 .","journal-title":"Comput Human Behav"},{"issue":"2","key":"85_CR20","doi-asserted-by":"crossref","first-page":"125","DOI":"10.1080\/13691180500146185","volume":"8","author":"C Haythornthwaite","year":"2005","unstructured":"Haythornthwaite C. Social networks and Internet connectivity effects. Inform Commun Soc. 2005;8(2):125\u201347. doi: 10.1080\/13691180500146185 .","journal-title":"Inform Commun Soc"},{"key":"85_CR21","unstructured":"Hotz V (2011) Cystinosis Foundation Inc. Beyond borders. RareConnect. 2011. http:\/\/www.rareconnect.org\/en\/community\/zystinose\/article\/cystinosis-foundation-inc-beyond-borders . Accessed June 2012."},{"key":"85_CR22","volume-title":"Roller skating with rickets","author":"J Jondle","year":"2012","unstructured":"Jondle J. Roller skating with rickets. USA: Jessica Jondle; 2012."},{"key":"85_CR23","volume-title":"The National Organization for Rare Disorders and the experiences of the rare disorder community","author":"M Krammer","year":"2003","unstructured":"Krammer M. The National Organization for Rare Disorders and the experiences of the rare disorder community. Danbury: National Organization for Rare Disorders; 2003."},{"issue":"4","key":"85_CR24","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1300\/J138v05n04_02","volume":"5","author":"J Beall","year":"2001","unstructured":"Beall J. Internet resources in rare diseases. Health Care Internet. 2001;5(4):11\u20137. doi: 10.1300\/J138v05n04_02 .","journal-title":"Health Care Internet"},{"key":"85_CR25","volume-title":"Emerging adulthood: the winding road from the late teens through the twenties","author":"JJ Arnett","year":"2004","unstructured":"Arnett JJ. Emerging adulthood: the winding road from the late teens through the twenties. USA: Oxford University Press; 2004."},{"key":"85_CR26","unstructured":"Cystinosis Research Network, Doyle M, Hammond C. Results of the living with cystinosis survey. 2011."},{"issue":"1","key":"85_CR27","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1037\/1091-7527.25.1.68","volume":"25","author":"A Spilkin","year":"2007","unstructured":"Spilkin A, Ballantyne A. Behavior in children with a chronic illness: a descriptive study of child characteristics, family adjustment, and school issues in children with cystinosis. Fam Syst Health. 2007;25(1):68\u201384.","journal-title":"Fam Syst Health"},{"key":"85_CR28","volume-title":"Theoretical sensitivity: advances in the methodology of grounded theory","author":"BG Glaser","year":"1978","unstructured":"Glaser BG. Theoretical sensitivity: advances in the methodology of grounded theory. Mill Valley: Sociology; 1978."},{"key":"85_CR29","volume-title":"Constructing grounded theory: a practical guide through qualitative analysis","author":"K Charmaz","year":"2006","unstructured":"Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. USA: Sage Publications Ltd; 2006."},{"key":"85_CR30","volume-title":"Qualitative methods in social work research","author":"D Padgett","year":"2008","unstructured":"Padgett D. Qualitative methods in social work research. 2nd ed. USA: Sage Publications, Inc; 2008.","edition":"2"},{"issue":"5","key":"85_CR31","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1037\/0003-066X.55.5.469","volume":"55","author":"JJ Arnett","year":"2000","unstructured":"Arnett JJ. Emerging adulthood\u2014a theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469\u201380. doi: 10.1037\/\/0003-066x.55.5.469 .","journal-title":"Am Psychol"},{"issue":"6","key":"85_CR32","doi-asserted-by":"crossref","first-page":"1304","DOI":"10.1542\/peds.110.S3.1304","volume":"110","author":"American Academy of Pediatrics","year":"2002","unstructured":"American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6):1304\u20136.","journal-title":"Pediatrics"},{"issue":"1","key":"85_CR33","doi-asserted-by":"crossref","first-page":"182","DOI":"10.1542\/peds.2011-0969","volume":"128","author":"WC Cooley","year":"2011","unstructured":"American Academy of Pediatrics, American Academy of Family Physicians, American College of P, Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182\u2013200. doi: 10.1542\/peds.2011-0969 .","journal-title":"Pediatrics"},{"key":"85_CR34","volume-title":"Gerund grounded theory: the basic social process dissertation","author":"BG Glaser","year":"1996","unstructured":"Glaser BG, Kaplan WD. Gerund grounded theory: the basic social process dissertation. Mill Valley: Sociology; 1996."},{"issue":"2","key":"85_CR35","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1093\/sw\/54.2.101","volume":"54","author":"DK Padgett","year":"2009","unstructured":"Padgett DK. Qualitative and mixed methods in social work knowledge development. Social Work. 2009;54(2):101\u20135.","journal-title":"Social Work"},{"issue":"1","key":"85_CR36","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1177\/1049731503257870","volume":"14","author":"JW Anastas","year":"2004","unstructured":"Anastas JW. Quality in qualitative evaluation: issues and possible answers. Res Soc Work Pract. 2004;14(1):57\u201365.","journal-title":"Res Soc Work Pract"},{"key":"85_CR37","volume-title":"Getting out of the data: grounded theory conceptualisation","author":"BG Glaser","year":"2011","unstructured":"Glaser BG. Getting out of the data: grounded theory conceptualisation. Mill Valley: Sociology; 2011."},{"key":"85_CR38","volume-title":"The coding manual for qualitative researchers","author":"J Salda\u00f1a","year":"2013","unstructured":"Salda\u00f1a J. The coding manual for qualitative researchers. 2nd ed. USA: Sage; 2013.","edition":"2"},{"key":"85_CR39","unstructured":"Shal P. CRN education and awareness update. The Cystinosis Advocate; 2012. p. 16\u20137."},{"key":"85_CR40","unstructured":"Access To Credible Genetics Resource Network, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Genetic Alliance. Trust it or trash it? 2012. http:\/\/www.trustortrash.org\/ ."},{"issue":"4","key":"85_CR41","doi-asserted-by":"crossref","first-page":"242","DOI":"10.7326\/0003-4819-147-4-200708210-00006","volume":"147","author":"WA Gahl","year":"2007","unstructured":"Gahl WA, Balog JZ, Kleta R. Nephropathic cystinosis in adults: natural history and effects of oral cysteamine therapy. Ann Intern Med. 2007;147(4):242\u201350.","journal-title":"Ann Intern Med"},{"issue":"2","key":"85_CR42","doi-asserted-by":"crossref","first-page":"179","DOI":"10.1038\/ki.2011.277","volume":"81","author":"A Brodin-Sartorius","year":"2012","unstructured":"Brodin-Sartorius A, Tete MJ, Niaudet P, Antignac C, Guest G, Ottolenghi C, et al. Cysteamine therapy delays the progression of nephropathic cystinosis in late adolescents and adults. Kidney Int. 2012;81(2):179\u201389. doi: 10.1038\/ki.2011.277 .","journal-title":"Kidney Int"},{"key":"85_CR43","volume-title":"Cystinosis kids are living time bombs without meds","author":"SD James","year":"2012","unstructured":"James SD. Cystinosis kids are living time bombs without meds. ABCNews: Good Morning America; 2012."},{"key":"85_CR44","doi-asserted-by":"crossref","first-page":"45","DOI":"10.2147\/TACG.S17597","volume":"4","author":"FF Costa","year":"2011","unstructured":"Costa FF, Foly LS, Coutinho MP. DataGenno: building a new tool to bridge molecular and clinical genetics. Appl Clin Genet. 2011;4:45\u201354.","journal-title":"Appl Clin Genet"},{"key":"85_CR45","unstructured":"Newman ED. Managing medical information (tools, rules, and what\u2019s cool). In: Harrington J, Newman ED (eds). Great Health Care: Making it Happen. Springer, New York, 2012:65\u201372."},{"key":"85_CR46","unstructured":"Tanis M. Online social support groups. The Oxford handbook of internet psychology. 2007;139."},{"key":"85_CR47","volume-title":"Stigma: notes on the management of spoiled identity","author":"E Goffman","year":"1963","unstructured":"Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs: Prentice-Hall; 1963."},{"key":"85_CR48","doi-asserted-by":"crossref","unstructured":"Daw J, Margolis R, Verdery AM. Siblings, friends, course-mates, club-mates: how adolescent health behavior homophily varies by race, class, gender, and health status. Soc Sci Med. Epub 2014 Mar 12.","DOI":"10.1016\/j.socscimed.2014.02.047"},{"issue":"1","key":"85_CR49","first-page":"18","volume":"18","author":"PF Lazarsfeld","year":"1954","unstructured":"Lazarsfeld PF, Merton RK. Friendship as a social process: a substantive and methodological analysis. Freedom Control Mod Soc. 1954;18(1):18\u201366.","journal-title":"Freedom Control Mod Soc"},{"key":"85_CR50","unstructured":"Holton JA. Rehumanising knowledge work through fluctuating support networks: a grounded theory. Grounded Theory Rev Int J. 2007;6(2). http:\/\/groundedtheoryreview.com\/2007\/03\/30\/1162\/ ."},{"issue":"1","key":"85_CR51","doi-asserted-by":"crossref","first-page":"c12","DOI":"10.1159\/000245065","volume":"114","author":"MH Vaisbich","year":"2010","unstructured":"Vaisbich MH, Koch VH. Report of a Brazilian multicenter study on nephropathic cystinosis. Nephron Clin Pract. 2010;114(1):c12\u20138. doi: 10.1159\/000245065 .","journal-title":"Nephron Clin Pract"},{"key":"85_CR52","unstructured":"Tsigin AN, Kagan MY, Kartamysheva NN, Karagulian NA, Levchenko EN. Nephropathic cystinosis: an underestimated problem in pediatric nephrology. Clin Nephrol. 2011;4:20\u20133."},{"key":"85_CR53","doi-asserted-by":"crossref","first-page":"405","DOI":"10.1146\/annurev.soc.34.040507.134601","volume":"34","author":"KP Smith","year":"2008","unstructured":"Smith KP, Christakis NA. Social networks and health. Annu Rev Sociol. 2008;34:405\u201329.","journal-title":"Annu Rev Sociol"}],"container-title":["The Patient - Patient-Centered Outcomes Research"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-014-0085-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s40271-014-0085-9\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-014-0085-9","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,4,17]],"date-time":"2022-04-17T08:16:24Z","timestamp":1650183384000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s40271-014-0085-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,9,18]]},"references-count":53,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2015,2]]}},"alternative-id":["85"],"URL":"https:\/\/doi.org\/10.1007\/s40271-014-0085-9","relation":{},"ISSN":["1178-1653","1178-1661"],"issn-type":[{"value":"1178-1653","type":"print"},{"value":"1178-1661","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,9,18]]}}}