206
Views
0
CrossRef citations to date
0
Altmetric
Research Article

Improving Health Information for Rare Disease Patients and Caregivers: A Survey of Preferences for Health Information Seeking Channels and Formats

ORCID Icon, ORCID Icon &
Pages 83-96 | Received 17 Jan 2023, Accepted 10 Feb 2023, Published online: 28 Mar 2023

References

  • National Institute of Health. FAQs about rare diseases [Internet]; n.d. [accessed 2023 Jan 17]. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases.
  • Moliner AM, Waligóra J. The European Union policy in the field of rare diseases. Public Health Genom. 2013;16(6):268–77. doi:10.1159/000355930.
  • EURORDIS. What is a rare disease? [Internet]. Rare Disease Europe; n.d. [accessed 2023 Jan 17]. https://www.eurordis.org/information-support/what-is-a-rare-disease/.
  • Gallo AM, Hadley EK, Angst DB, Knafl KA, Smith CA. Parents’ concerns about issues related to their children’s genetic conditions. J Pediatr Nurs. 2008 Jan;13(1):4–14. doi:10.1111/j.1744-6155.2008.00129.x.
  • Wang T, Lund B. Categories of information need expressed by parents of individuals with rare genetic disorders in a Facebook community group: a case study with implications for information professionals. J Consum Health Internet. 2020 Jan 2;24(1):20–34. doi:10.1080/15398285.2020.1713700.
  • van den Bree MB, Miller G, Mansell E, Thapar A, Flinter F, Owen MJ. The internet is parents’ main source of information about psychiatric manifestations of 22q11. 2 deletion syndrome (22q11. 2DS). Eur J Med Genet. 2013 Aug 1;56(8):439–41. doi:10.1016/j.ejmg.2013.05.001.
  • Pelentsov LJ, Laws TA, Esterman AJ. The supportive care needs of parents caring for a child with a rare disease: a scoping review. Disabil Health J. 2015;8(4):475–91. doi:10.1016/j.dhjo.2015.03.009.
  • Wiljer D, Catton P. Multimedia formats for patient education and health communication: does user preference matter? J Med Internet Res. 2003 Aug 29;5(3):e889. doi:10.2196/jmir.5.3.e19.
  • Paterson BL, Brewer J, Stamler LL. Engagement of parents in on-line social support interventions. J Pediatr Nurs. 2013 Apr 1;28(2):114–24. doi:10.1016/j.pedn.2012.05.001.
  • Nicholl H, Tracey C, Begley T, King C, AM L. Internet use by parents of children with rare conditions: findings from a study on parents’ web information needs. J Med Internet Res. 2017 Feb 28;19(2):e5834. doi:10.2196/jmir.5834.
  • Borup J, West RE, Thomas R. The impact of text versus video communication on instructor feedback in blended courses. Educ Technol Res Dev. 2015 Apr;63(2):161–84. doi:10.1007/s11423-015-9367-8.
  • AN H, Rankin-Erickson JL. A picture is worth a thousand words: using visual images to improve comprehension for middle school struggling readers. Read Teach. 2003 May 1;56(8):758–70.
  • Wilberschied L, Berman PM. Effect of using photos from authentic video as advance organizers on listening comprehension in an FLES Chinese class. Foreign Lang Ann. 2004 Dec;37(4):534–40. doi:10.1111/j.1944-9720.2004.tb02420.x.
  • Clarke MA, Moore JL, Steege LM, Koopman RJ, Belden JL, Canfield SM, Meadows SE, Elliott SG, Kim MS. Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: a literature review. J Health Inform. 2016 Dec;22(4):992–1016. doi:10.1177/1460458215602939.
  • McKenna KY, Bargh JA. Coming out in the age of the Internet: identity” demarginalization” through virtual group participation. J Pers Soc Psychol. 1998 Sep;75(3):681. doi:10.1037/0022-3514.75.3.681.
  • Hasler L, Ruthven I. Escaping information poverty through internet newsgroups. Proc Int AAAI Conf Weblogs Soc Media. 2011;5(1):153–160.
  • Eichhorn KC. Soliciting and providing social support over the internet: an investigation of online eating disorder support groups. J ComputT-Mediat Comm. 2008 Oct 1;14(1):67–78. doi:10.1111/j.1083-6101.2008.01431.x.
  • Davison KP, Pennebaker JW, Dickerson SS. Who talks? The social psychology of illness support groups. Am Psychol. 2000 Feb;55(2):205. doi:10.1037/0003-066X.55.2.205.
  • Meier A, Lyons E, Frydman G, Forlenza M, Rimer B. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007 May 14;9(2):e591. doi:10.2196/jmir.9.2.e12.
  • 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 Mar 31;7(1):e137. doi:10.2196/jmir.7.1.e10.
  • Brashers DE, Neidig JL, Reynolds NR, Haas SM. Uncertainty in illness across the HIV/AIDS trajectory. JANAC. 1998 Jan 1;9(1):66–77. doi:10.1016/S1055-3290(98)80078-2.
  • Gundersen T. ‘One wants to know what a chromosome is’: the internet as a coping resource when adjusting to life parenting a child with a rare genetic disorder. SHI. 2011 Jan;33(1):81–95.
  • McKay SD, Dolan LA, Morcuende JA. Treatment results of late-relapsing idiopathic clubfoot previously treated with the Ponseti method. J Pediatr Orthop. 2012 Jun 1;32(4):406–11. doi:10.1097/BPO.0b013e318256117c.
  • Kole A, Faurisson F, Mavris M. Experiences and expectations of rare disease patients on diagnosis and care in Europe. J Voice. 2009;12:241–45.
  • Babrow AS, Hines SC, Kasch CR. Managing uncertainty in illness explanation: an application of problematic integration theory. In: Whaley BB, editor. Explaining illness: research, theory, and strategies. Mahwah (NJ): Lawrence Erlbaum Associates, Inc.; 2000. p. 41–68.
  • Limb L, Nutt S, Sen A. Experiences of rare diseases: an insight from patients and families. Rare Disease UK; n.d. [accessed 2022 Jan 17]. https://www.raredisease.org.uk/media/1594/rduk-family-report.pdf.
  • Litzkendorf S, Babac A, Rosenfeldt D, Schauer F, Hartz T, Lührs V, von der Schulenburg JM, Frank M. Information needs of people with rare diseases-what information do patients and their relatives require. J Rare Dis Diagn Ther. 2016 Mar 24;2(2):40.
  • Morgan T, Schmidt J, Haakonsen C, Lewis J, Della Rocca M, Morrison S, Biesecker B, Kaphingst KA. Using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011. JMIR Res Protoc. 2014 Feb 24;3(1):e2916. doi:10.2196/resprot.2916.
  • Pauer F, Litzkendorf S, Göbel J, Storf H, Zeidler J. von der Schulenburg JM. Rare diseases on the internet: an assessment of the quality of online information. J Med Internet Res. 2017 Jan 18;19(1):e7056. doi:10.2196/jmir.7056.
  • Stanarević Katavić S. Health information behaviour of rare disease patients: seeking, finding and sharing health information. Health Info Libr J. 2019 Dec;36(4):341–56. doi:10.1111/hir.12261.
  • Fox S. Peer-to-peer healthcare [Internet]. Pew Research Center; 2011 Aug 2 [accessed 2023 Jan 17]. https://www.pewresearch.org/internet/2011/08/02/peer-to-peer-healthcare/.
  • Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A, Thombs BD. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: a scoping review. Patient. 2017;10(3):283–93. doi:10.1007/s40271-016-0213-9.
  • Aymé S, Kole A, Groft S. Empowerment of patients: lessons from the rare diseases community. Lancet. 2008 Jun 14;371(9629):2048–51. doi:10.1016/S0140-6736(08)60875-2.
  • Doyle M. Peer support and mentorship in a US rare disease community: findings from the cystinosis in emerging adulthood study. Patient. 2015 Feb;8(1):65–73. doi:10.1007/s40271-014-0085-9.
  • Goffman E. Stigma: notes on the management of spoiled identity. Englewood Cliffs (NJ): Prentice Hall; 1963.
  • Gentina E, Chen R. Digital natives’ coping with loneliness: Facebook or face-to-face? Inf Manag J. 2019 Sep 1;56(6):103138.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.