Click here to download

Rare diseases: information and communication in the patient journey
Journal Title: SOCIOLOGIA DELLA COMUNICAZIONE  
Author/s: Michaela Liuccio 
Year:  2018 Issue: 55 Language: Italian 
Pages:  18 Pg. 30-47 FullText PDF:  239 KB
DOI:  10.3280/SC2018-055003
(DOI is like a bar code for intellectual property: to have more infomation:  clicca qui   and here 



Keywords: Rare diseases, patients, information, communication

  1. Dutta-Bergeman M.J. (2004), The Impact of Completeness and Web Use Motivation on the Credibility of e-Health Information, in «the Journal of Communication», 54 (2): 253-269,
  2. Agarwal AK, Murinson BB. (2012), New dimensions in patient-physician interaction: values, autonomy, and medical information in the patient-centered clinical encounter, «Rambam Maimonides Medical Journal», 3(3),
  3. Albanesi C. (2004), I focus group, Carocci, Roma.
  4. AlGhamdi K.M., Moussa A.A. (2012), Internet use by the public to search for health-related information, in «International Journal of Medical Informatics», 8 (1): 363-373.
  5. Anderson M., Elliott E.J., Zurynski Y.A. (2013), Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support, in «Orphanet Journal of Rare Diseases», 8(1):22,, DOI: 10.1186/1750-1172-8-22
  6. Andersen K.M., Medaglia R., Henriksen H.Z. (2012), Social media in public health care: Impact domain propositions, in «Government Information Quarterly», 29 (4): 462-469,
  7. Ardigo A. (1997), Società e salute. Lineamenti di sociologia sanitaria, FrancoAngeli, Milano.
  8. Augè M., Herzlich C. (a cura di) (1986), Il senso del male. Antropologia, storia e sociologia della malattia, Il Saggiatore, Milano.
  9. Carpenter D.M., DeVellis R.F., Hogan S.L., Fisher E.B., DeVellis B.M., Jordan J.M. (2011), Use and perceived credibility of medication information sources for patients with a rare illness: differences by gender, in «Journal of Health Communication» 16(6):629-42,, DOI: 10.1080/10810730.2011.551995
  10. Doyle M. (2015), Peer Support and Mentorship in a US Rare Disease Community: Findings from the Cystinosis in Emerging Adulthood Study, in «Patient», 8 (1): 65-73,
  11. Du Pré A. (2014), Communicating about health: current issues and perspectives, Oxford University Press, Oxford.
  12. Dwyer A.A., Quinton R., Morin D., Pitteloud N. (2014), Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support, in Orphanet Journal of Rare Diseases», 9:83,, DOI: 10.1186/1750-1172-9-83
  13. Frisina A. (2010), Focus group, il Mulino, Bologna.
  14. Griffith G.M., Hastings R.P., Nash S., Petalas M., Oliver C., Howlin P., Moss J., Petty J., Tunnicliffe P. (2011), You have to sit and explain it all, and explain yourself. Mothers’ experiences of support services for their offspring with a rare genetic intellectual disability syndrome, in «Journal of Genetic Counseling», 20(2):165-77,
  15. Groft S.C., de la Paz M.P. (2010), Rare diseases. Avoiding misperceptions and establishing realities: the need for reliable epidemiological data, in «Advances in Experimental Medicine and Biology», 686:3-1 , ISSN: 0065-2598.
  16. Hannawa A.F., Garcia-Jiménez L., Candrian C., Rossmann C., Schulz P.J. (2015), Identifying the Field of Health Communication, in «Journal of Health Communication: International Perspectives», 20(5):1-10,, DOI: 10.1080/10810730.2014.999891
  17. Hesselgrave B.L. (2003), Helping to manage the high cost of rare diseases, «Managed Care Quarterly»,11(1):1-6.
  18. Hilton-Kamm D., Sklansky M., Chang R.K. (2014), How not to tell parents about their child’s new diagnosis of congenital heart disease: an Internet survey of 841 parents, in «Pediatric Cardiology», 35(2):239-52,
  19. Hilton-Kamm D., Chang R.K., Sklansky M. (2012), Prenatal diagnosis of hypoplastic left heart syndrome: impact of counseling patterns on parental perceptions and decisions regarding termination of pregnancy, in «Pediatric Cardiology», 33(8):1402-10, DOI: 10.1007/s00246-012-0366-9
  20. Huyard C. (2009), What, if anything, is specific about having a rare disorder? Patients’ judgements on being ill and being rare, in «Health Expectations», 12(4):361-70,
  21. Jhaveri K.D., Schrier P.B., Mattana J. (2013), Paging Doctor Google!, in «Heuristics vs. technology», 2:90,
  22. Jhonson J.D. (2003), On contexts of information seeking, in «Information Processing and management», 39 (5): 735-760,, DOI: 10.1016/S0306-4573(02)00030-4
  23. Korda H., Itani Z. (2013), Harnessing social media for health promotion and behavior change, in «Health Promotion Practice», 14 (1): 15-23,, DOI: 10.1177/1524839911405850
  24. Kowalski C., Kahana E., Kuhr K., Ansmann L., Pfaff H. (2014), Changes over time in the utilization of disease-related Internet information in newly diagnosed breast cancer patients 2007 to 2013, in «Journal of Medical Internet Research», 16(8),
  25. Kreps G.L., Thornton B.C. (1984), Health Communication. Theory and Practice, Longman Inc., New York.
  26. Lambert S.D., Loiselle C.G. (2007), Health Information Seeking Behavior, in «Qualitative Health Research», 17 (8): 1006-1019,, DOI: 10.1177/1049732307305199
  27. Liuccio M., Belotti R., Comune A., Zambito V., Schulz P. (2015), Communication in rare diseases: A literature review, in «Journal of communications research», 7: 215-225, ISSN: 1935-3537.
  28. Morgan T, Schmidt J, Haakonsen C., Lewis J., Della Rocca M., Morrison S., Biesecker B., Kaphingst K.A. (2014), Using the Internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011, in «JMIR Research Protocol», 3(1):e10,
  29. Polich G.R. (2012), Rare disease patient groups as clinical researchers, in «Drug Discovery Today», 17(3-4):167-72,
  30. Schumacher K.R., Stringer K.A., Donohue J.E., Yu S., Shaver A., Caruthers R.L., Zikmund-Fisher B.J., Fifer C., Goldberg C., Russell M.W. (2014), Social media methods for studying rare diseases, in «Pediatrics», 133(5):e1345-53,
  31. Siliquini R., Ceruti M., Lovato E., Bert F., Bruno S., De Vito E. et al. (2011), Surfing the Internet for health information: An Italian survey on use and population choice, in «BMC Medical Informatics and Decision Making», 11 (1): 1-9,, DOI: 10.1186/1472-6947-11-21
  32. Sundar S.S., Rice R.E., Kim H.S., Sciamanna C.N. (2011), Online health information: Conceptual challenges and theoretical opportunities in Thompson T.L., Parrot R., Nussbaum J.F. (eds.) The Routledge Handbook of Health Communication, Routledge, New York, pp. 181-202.
  33. Thompson T.L., Parrot R., Nussbaum J.F. (2011), The Routledge Handbook of Health Communication, Routledge, New York.
  34. Velasco E., Agheneza T., Denecke K., Kirchner G., Eckmanns T. (2014), Social media and Internet-based data in global systems for public health surveillance: a systematic review, in «Milbank Quarterly», 92(1):7-33,, DOI: 10.1111/1468-0009.12038
  35. Wicks P., Massagli M., Frost J., Brownstein C., Okun S., Vaughan T., Bradley R., Heywood J. (2010), Sharing health data for better outcomes on PatientsLikeMe, in «J Med Internet Res.» , 12(2):e19,
  36. Zanni G.R.(2012), Locating useful patient brochures and handouts, in «Consult Pharm.» 27(5):366-70,

Michaela Liuccio, Rare diseases: information and communication in the patient journey in "SOCIOLOGIA DELLA COMUNICAZIONE " 55/2018, pp. 30-47, DOI:10.3280/SC2018-055003

   

FrancoAngeli is a member of Publishers International Linking Association a not for profit orgasnization wich runs the CrossRef service, enabing links to and from online scholarly content