Evidence map›Paper›PMID 35649593›Full record

ArticleBMJ open2022

Canadian healthcare capacity gaps for disease-modifying treatment in Huntington's disease: a survey of current practice and modelling of future needs.

Angèle Bénard, Sylvain Chouinard, Blair R Leavitt, Nathalie Budd, Jennifer W Wu, Kerrie Schoffer

Open access · goldAbstract read
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.2field-weighted citation impact, top 57% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 2 citations in OpenAlex.

  1. Huntington's Disease and Dentistry: A Review of Its Etiology, Clinical Presentation, Symptomatic Pharmacotherapy, and Dental Management.Special care in dentistry : official publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 5 institutions in 1 country.

Angèle BénardHuntington Society of Canada, Waterloo, Ontario, Canada.
Sylvain ChouinardDepartment of Medicine, Université de Montréal, Montreal, Quebec, Canada.
Blair R LeavittDepartment of Medical Genetics and Department of Medicine, Division of Neurology, University of British Columbia, Vancouver, British Columbia, Canada.
Nathalie BuddHoffmann-La Roche Limited, Mississauga, Ontario, Canada nathalie.budd@roche.com.ORCID 0000-0002-9430-4712
Jennifer W WuHoffmann-La Roche Limited, Mississauga, Ontario, Canada.
Kerrie SchofferDivision of Neurology, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, Canada.
Roche (Canada) · CACentre Hospitalier de l’Université de Montréal · CADalhousie University · CAMultiple Sclerosis Society of Canada · CAUniversity of British Columbia · CA

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesDisease-modifying therapies in development for Huntington's disease (HD) may require specialised administration and additional resource capacity. We sought to understand current and future capacity for HD management in Canada considering the possible introduction of an intrathecal (IT) disease-modifying treatment (DMT). DESIGN, SETTING AND

participantsUsing a case study, mixed methods framework, online surveys followed by semistructured interviews were conducted in late 2020 and early 2021. Neurologists from Canadian HD (n=16) and community (n=11) centres and social workers (n=16) were invited to complete online surveys assessing current HD management and potential capacity to support administration of an IT DMT. OUTCOME MEASURES: Survey responses, anticipated demand and assumed resource requirements were modelled to reveal capacity to treat (ie, % of eligible patients) by centre. Resource bottlenecks and incremental support required (full-time equivalent, FTE) were also determined.

resultsNeurologists from 15/16 HD centres and 5/11 community centres, plus 16/16 social workers participated. HD centres manage 94% of patients with HD currently seeking care in Canada, however, only 20% of IT DMT-eligible patients are currently seen by neurologists. One-third of centres have no access to nursing support. The average national incremental nursing, room, neurologist and social worker support required to provide IT DMT to all eligible patients is 0.73, 0.36, 0.30 and 0.21 FTE per HD centre, respectively. At peak demand, current capacity would support the treatment of 6% of IT DMT-eligible patients. If frequency of administration is halved, capacity for IT-DMT administration only increases to 11%.

conclusionsIn Canada, there is little to no capacity to support the administration of an IT DMT for HD. Current inequitable and inadequate resourcing will require solutions that consider regional gaps and patient needs.

Indexed as

Huntington DiseaseCanadaDelivery of Health CareHospital Bed CapacityHumansSurveys and QuestionnairesEPIDEMIOLOGYHEALTH SERVICES ADMINISTRATION & MANAGEMENTHuman resource managementNEUROLOGYQUALITATIVE RESEARCHTHERAPEUTICS

Identifiers

PMID35649593
PMCPMC9161103
OpenAlexW4281993294

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.