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Sökning: WFRF:(Koltowska Häggström Maria 1957 ) > Support Needs of Pa...

  • Kreitschmann-Andermahr, IlonkaUniv Duisburg Essen, Dept Neurosurg, D-45147 Essen, Germany (författare)

Support Needs of Patients with Cushing's Disease and Cushing's Syndrome : Results of a Survey Conducted in Germany and the USA

  • Artikel/kapitelEngelska2018

Förlag, utgivningsår, omfång ...

  • Hindawi Publishing Corporation,2018
  • electronicrdacarrier

Nummerbeteckningar

  • LIBRIS-ID:oai:DiVA.org:uu-369445
  • https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-369445URI
  • https://doi.org/10.1155/2018/9014768DOI

Kompletterande språkuppgifter

  • Språk:engelska
  • Sammanfattning på:engelska

Ingår i deldatabas

Klassifikation

  • Ämneskategori:ref swepub-contenttype
  • Ämneskategori:art swepub-publicationtype

Anmärkningar

  • Background. Cushing's disease (CD) and Cushing's syndrome (CS) are chronic illnesses, characterized by symptoms of prolonged hypercortisolism, which often changes to hypocortisolism after successful treatment. In view of the high disease burden of CD/CS patients and long-term impaired quality of life, the present survey was conducted to gain information about subjective illness distress and patients' specific needs in terms of supportive measures beyond medical interventions. Patients and Methods. Cross-sectional questionnaire study including patients with CD treated in 2 German neurosurgical tertiary referral centers and CD/CS patient members of a US-based patient support group completed a survey inquiring about disease burden, coping strategies, and support needs. Additionally, the degree of interest in different offers, e.g., internet-based programs and seminars, was assessed. Results. 84 US and 71 German patients answered the questionnaire. Patients in both countries indicated to suffer from Cushing-related symptoms, reduced performance, and psychological problems. 48.8% US patients and 44.4% German patients stated that good medical care and competent doctors helped them the most in coping with the illness. US patients were more interested in support groups (p = 0.035) and in courses on illness coping (p = 0.008) than the German patients, who stated to prefer brochures (p = 0.001). 89.3% of US patients would attend internet-based programs compared to 75.4% of German patients (p = 0.040). There were no differences between groups for the preferred duration of and the willingness to pay for such a program, but US patients would travel longer distances to attend a support meeting (p = 0.027). Conclusion. Patients in both countries need skilled physicians and long-term medical care in dealing with the effects of CD/CS, whereas other support needs differ between patients of both countries. The latter implies that not only disease-specific but also culture-specific training programs would need to be considered to satisfy the needs of patients in different countries.

Ämnesord och genrebeteckningar

Biuppslag (personer, institutioner, konferenser, titlar ...)

  • Siegel, SonjaUniv Duisburg Essen, Dept Neurosurg, D-45147 Essen, Germany (författare)
  • Gammel, ChristaUniv Hosp Erlangen, Dept Neurosurg, D-91054 Erlangen, Germany (författare)
  • Campbell, KarenCushings Support & Res Fdn, Plymouth, MA 02360 USA (författare)
  • Edwin, LeslieCushings Support & Res Fdn, Plymouth, MA 02360 USA (författare)
  • Grzywotz, AgnieszkaUniv Duisburg Essen, Dept Neurosurg, D-45147 Essen, Germany (författare)
  • Kuhna, VictoriaEv Hosp Oldenburg, Dept Neurosurg, D-26121 Oldenburg, Germany (författare)
  • Koltowska-Häggström, Maria,1957-Uppsala universitet,Institutionen för kvinnors och barns hälsa(Swepub:uu)makot956 (författare)
  • Mueller, OliverUniv Duisburg Essen, Dept Neurosurg, D-45147 Essen, Germany (författare)
  • Buchfelder, MichaelUniv Hosp Erlangen, Dept Neurosurg, D-91054 Erlangen, Germany (författare)
  • Kleist, BernadetteUniv Duisburg Essen, Dept Neurosurg, D-45147 Essen, Germany (författare)
  • Univ Duisburg Essen, Dept Neurosurg, D-45147 Essen, GermanyUniv Hosp Erlangen, Dept Neurosurg, D-91054 Erlangen, Germany (creator_code:org_t)

Sammanhörande titlar

  • Ingår i:International Journal of Endocrinology: Hindawi Publishing Corporation1687-83371687-8345

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