Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs
Objectives Disease-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) di...
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| Format: | Article |
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BMJ Publishing Group
2022-06-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/6/e062740.full |
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| author | Sylvain Chouinard Blair R Leavitt Angèle Bénard Nathalie Budd Jennifer W Wu Kerrie Schoffer |
| author_facet | Sylvain Chouinard Blair R Leavitt Angèle Bénard Nathalie Budd Jennifer W Wu Kerrie Schoffer |
| author_sort | Sylvain Chouinard |
| collection | DOAJ |
| description | Objectives Disease-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 participants Using 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.Results Neurologists 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%.Conclusions In 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. |
| format | Article |
| id | doaj-art-301483857d1143f782853b253d6f2a90 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-06-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-301483857d1143f782853b253d6f2a902025-01-27T20:15:10ZengBMJ Publishing GroupBMJ Open2044-60552022-06-0112610.1136/bmjopen-2022-062740Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needsSylvain Chouinard0Blair R Leavitt1Angèle Bénard2Nathalie Budd3Jennifer W Wu4Kerrie Schoffer59 Department of Movement Disorders, Centre Hospitalier Universitaire de Montréal-Hôtel Dieu, CHUM, Montréal, QC, CanadaDepartment of Medical Genetics and Department of Medicine, Division of Neurology, University of British Columbia, Vancouver, British Columbia, CanadaHuntington Society of Canada, Waterloo, Ontario, CanadaHoffmann-La Roche Limited, Mississauga, Ontario, CanadaHoffmann-La Roche Limited, Mississauga, Ontario, CanadaDivision of Neurology, Dalhousie University Faculty of Medicine, Halifax, Nova Scotia, CanadaObjectives Disease-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 participants Using 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.Results Neurologists 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%.Conclusions In 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.https://bmjopen.bmj.com/content/12/6/e062740.full |
| spellingShingle | Sylvain Chouinard Blair R Leavitt Angèle Bénard Nathalie Budd Jennifer W Wu Kerrie Schoffer Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs BMJ Open |
| title | Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs |
| title_full | Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs |
| title_fullStr | Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs |
| title_full_unstemmed | Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs |
| title_short | Canadian healthcare capacity gaps for disease-modifying treatment in Huntington’s disease: a survey of current practice and modelling of future needs |
| title_sort | canadian healthcare capacity gaps for disease modifying treatment in huntington s disease a survey of current practice and modelling of future needs |
| url | https://bmjopen.bmj.com/content/12/6/e062740.full |
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