501
Views
21
CrossRef citations to date
0
Altmetric
Research Articles

Information needs and information-seeking preferences of ALS patients and their carers

, , , , &
Pages 505-512 | Received 11 Feb 2014, Accepted 03 Jun 2014, Published online: 10 Jul 2014

References

  • Johnson JD, Case DO. Health Information Seeking. New York: Peter Lang Publishing, 2012.
  • Richter JG, Becker A, Specker C, Monser R, Schneider M. Disease-oriented internet use in outpatients with inflammatory diseases. J Rheumatol. 2004;63:216–22.
  • van de Poll-Franse LV, van Eenbergen MC. Internet use by cancer survivors: current use and future wishes. Support Care Cancer. 2008;16:1189–895.
  • Pennekamp PH, Diedrich O, Schmitt O, Kraft CN. Frequency and utility of internet use by orthopaedic patients. Z Orthop Ihre Grenzgeb. 2006;144:459–63.
  • Muusses LD, van Weert JC, van Dulmen S, Jansen J. Chemotherapy and information-seeking behavior: characteristics of patients using mass-media information sources. Psychooncology. 2012;21:993–1002.
  • Lejbkowicz I, Paperna T, Stein N, Dishon S, Miller A. Internet usage by patients with multiple sclerosis: implications to participatory medicine and personalized health care. Mult Scler Int. 2010;2010:640749.
  • James N, Daniels H, Rahman R, McConkey C, Derry J, Young A.A study of information seeking by cancer patients and their carers. Clin Oncol. (R Coll Radiol.) 2007;19:356–62.
  • Basch EM, Thaler HT, Shi W, Yakren S, Schrag D. Use of information resources by patients with cancer and their companions. Cancer. 2004;100:2476–83.
  • Burkell JA, Wolfe DL, Potter PJ, Jutai JA. Information needs and information sources of individuals living with spinal cord injury. Health Info Libr J. 2006;23:257–65.
  • Hay MC, Cadigan RJ, Khanna D, Strathmann C, Lieber E, Altman R, et al. Prepared patients: internet information seeking by new rheumatology patients. Arthritis Rheum. 2008;59:575–82.
  • Chiò A, Montuschi A, Cammarosano S, de Mercanti S, Cavallo E, Ilardi A, et al. ALS patients’ and caregivers’ communication preferences and information seeking behaviour. Eur J Neurol. 2008;15:55–60.
  • Peters TL, Floeter MK. Usage of support services in primary lateral sclerosis. Amyotroph Lateral Scler. 2009;10:185–7.
  • Gordon PH. Amyotrophic lateral sclerosis: an update for 2013 clinical features, pathophysiology, management and therapeutic trials. Aging Dis. 2013;4:295–310.
  • Eurostat (2013) Broadband and connectivity – households (isoc_bde15b_h) 2013 Available from: http://ec.europa.eu/eurostat. Last accessed 21.11.2013.
  • Andreassen HK, Bujnowska-Fedak MM, Chronaki CE, Dumitru RC, Pudule I, Santana S, et al. European citizens’ use of E-health services: a study of seven countries. BMC Public Health. 2007;7:53.
  • Kummervold PE, Wynn R. Health information accessed on the internet: the development in five European countries. Int J Telemed Appl. 2012;2012:297416.
  • Centeno-Cortés C, Núñez-Olarte JM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients’ responses. Palliat Med. 1994;8:39–44.
  • Meyza J. Truth-telling, information, and communication with cancer patients in Poland. Ann N Y Acad Sci. 1997; 809:468–79.
  • Blackhall LJ, Frank G, Murphy S, Michel V. Bioethics in a different tongue: the case of truth-telling. J Urban Health. 2001;78:59–71.
  • Grassi L, Giraldi T, Messina EG, Magnani K, Valle E, Cartei G. Physicians’ attitudes to and problems with truth-telling to cancer patients. Support Care Cancer. 2000; 8:40–5.
  • Edworthy SM. Crawling through the web: what did our patients find. J Rheumatol. 2001;28:1–2.
  • Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
  • Abdulla S, Vielhaber S, Machts J, Heinze HJ, Dengler R, Petri S. Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure. J Neurol. 2013;260:2242–55.
  • Turner MR, Wicks P, Brownstein CA, Massagli MP, Toronjo M, Talbot K, Al-Chalabi A. Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry. 2011;82:853–4.
  • Ellis CM, Simmons A, Jones DK, Bland J, Dawson JM, Horsfield MA, et al. Diffusion tensor MRI assesses corticospinal tract damage in ALS. Neurology. 1999;53:1051–8.
  • Tanaka Y, Yoshikura N, Harada N, Yamada M, Koumura A, Sakurai T, et al. Late-onset patients with sporadic amyotrophic lateral sclerosis in Japan have a higher progression rate of ALSFRS-R at the time of diagnosis. Intern Med. 2012;51:579–84.
  • Haverkamp LJ, Appel V, Appel SH. Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain. 1995;11:707–19.
  • Shoesmith CL, Findlater K, Rowe A, Strong MJ. Prognosis of amyotrophic lateral sclerosis with respiratory onset. J Neurol Neurosurg Psychiatry. 2007;78:629–31.
  • Statistisches Bundesamt. Statistisches Jahrbuch 2013. Chapter 7 Kultur, Medien, Freizeit, Wiesbaden, pp 185–216. www.destatis.de 2013.
  • Cotten SR, Gupta SS. Characteristics of online and offline health information seekers and factors that discriminate between them. Soc Sci Med. 2004;59:1795–806.
  • Flynn KE, Smith MA, Freese J. When do older adults turn to the internet for health information? Findings from the Wisconsin longitudinal study. J Gen Intern Med. 2006; 21:1295–301.
  • EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis: Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chiò A, van Damme P, Hardiman O, Kollewe K, Morrison KE, Petri S, Pradat PF, Silani V, Tomik B, Wasner M, Weber M. EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS): revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
  • Borasio GD, Sloan R, Pongratz DE. Breaking the news in amyotrophic lateral sclerosis. J Neurol Sci. 1998;160 (Suppl 1):S127–33.
  • McCluskey L, Casarett D, Siderowf A. Breaking the news: a survey of ALS patients and their caregivers. Amyotroph Lateral Scler Other Motor Neuron Disord. 2004;5:131–5.
  • Hallingbye T, Serafini M. Assessment of the quality of post-herpetic neuralgia treatment information on the internet. J Pain. 2011;12:1149–54.
  • Langille M, Veldhuyzen van Zanten S, Shanavaz SA, Massoud E. Systematic evaluation of obstructive sleep apnoea websites on the internet. J Otolaryngol Head Neck Surg. 2012;41:265–72.
  • Suarez-Almazor ME, Kendall C, Dorgan M. Surfing the net: information on the world wide web for persons with arthritis: patient empowerment or patient deceit?J Rheumatol. 2001;28:185–91.
  • van Uden-Kraan CF, Drossaert CH, Taal E, Smit WM, Moens HJ, Siesling S, et al. Health related internet use by patients with somatic diseases: frequency of use and characteristics of users. Inform Health Soc Care. 2009; 34:18–29.

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.