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A review of the enhanced CJD surveillance feasibility study in the elderly in Scotland, UK.
Kanguru, Lovney; Cudmore, Sarah; Logan, Gemma; Waddell, Briony; Smith, Colin; Molesworth, Anna; Knight, Richard.
Afiliación
  • Kanguru L; National CJD Research & Surveillance Unit (NCJDRSU), Centre for Clinical Brain Sciences, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU, UK. Lovney.Kanguru@ed.ac.uk.
  • Cudmore S; National CJD Research & Surveillance Unit (NCJDRSU), Centre for Clinical Brain Sciences, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU, UK.
  • Logan G; NHS Lothian and Queen Margaret University, Musselburgh, Scotland.
  • Waddell B; Department of Neurology, Ninewells Hospital, Dundee, Scotland.
  • Smith C; National CJD Research & Surveillance Unit (NCJDRSU), Centre for Clinical Brain Sciences, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU, UK.
  • Molesworth A; Edinburgh Brain Bank (EBB), Centre for Clinical Brain Sciences, University of Edinburgh, Chancellor's Building, 49 Little France Crescent, Edinburgh, UK.
  • Knight R; National CJD Research & Surveillance Unit (NCJDRSU), Centre for Clinical Brain Sciences, University of Edinburgh, Western General Hospital, Edinburgh, EH4 2XU, UK.
BMC Geriatr ; 24(1): 12, 2024 01 03.
Article en En | MEDLINE | ID: mdl-38172703
ABSTRACT

BACKGROUND:

Variant Creutzfeldt - Jakob disease (vCJD) arose from dietary contamination with bovine-spongiform-encephalopathy (BSE). Because of concerns that vCJD-cases might be missed in the elderly, a feasibility study of enhanced CJD surveillance on the elderly was begun in 2016. Recruitment was lower than predicted. We describe a review of the challenges encountered in that study identification, referral, and recruitment, and the effects of actions based on the results of that review.

METHODS:

Review was conducted in 2017. Study data for all eligible cases identified and referred from one participating service (Anne Rowling clinic (ARC)) was curated and anonymised in a bespoke database. A questionnaire was sent out to all the clinicians in medicine of the elderly, psychiatry of old age and neurology (including ARC) specialties in NHS Lothian, exploring possible reasons for low recruitment.

RESULTS:

Sixty-eight cases were referred from the ARC (March 2016-September 2017) 25% were recruited. Most cases had been referred because of diagnostic uncertainty. No difference was seen between those recruited and the non-recruited, apart from age and referrer. Twelve of 60 participating clinicians completed the questionnaire only 4 had identified eligible cases. High workload, time constraints, forgetting to refer, unfamiliarity with the eligibility criteria, and the rarity of eligible cases, were some of the reasons given. Suggestions as to how to improve referral of eligible cases included regular email reminders, feedback to referrers, improving awareness of the study, visible presence of the study team, and integration of the study with other research oriented services. These results were used to increase recruitment but without success.

CONCLUSION:

Recruitment was lower than predicted. Actions taken following a review at 21 months did not lead to significant improvement; recruitment remained low, with many families/patients declining to take part (75%). In assessing the failure to improve recruitment, two factors need to be considered. Firstly, the initial referral rate was expected to be higher because of existing patients already known to the clinical services, with later referrals being only newly presenting patients. Secondly, the unplanned absence of a dedicated study nurse. Searching digital records/anonymised derivatives to identify eligible patients could be explored.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Síndrome de Creutzfeldt-Jakob Tipo de estudio: Diagnostic_studies / Prognostic_studies / Screening_studies Límite: Aged / Animals / Humans País/Región como asunto: Europa Idioma: En Revista: BMC Geriatr / BMC geriatr. (Online) / BMC geriatrics (Online) Asunto de la revista: GERIATRIA Año: 2024 Tipo del documento: Article

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Síndrome de Creutzfeldt-Jakob Tipo de estudio: Diagnostic_studies / Prognostic_studies / Screening_studies Límite: Aged / Animals / Humans País/Región como asunto: Europa Idioma: En Revista: BMC Geriatr / BMC geriatr. (Online) / BMC geriatrics (Online) Asunto de la revista: GERIATRIA Año: 2024 Tipo del documento: Article