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BACKGROUND The most advanced disease-modifying therapies (DMTs) in development for Huntington's disease (HD) require intrathecal (IT) administration, which may create or exacerbate bottlenecks in resource capacity. OBJECTIVE To understand the readiness of healthcare systems for intrathecally administered HD DMTs in terms of resource capacity dynamics and implications for patients' access to treatment. METHODS Forty HD centres across 12 countries were included. Qualitative and quantitative data on current capacity in HD centres and anticipated capacity needs following availability of a DMT were gathered via interviews with healthcare professionals (HCPs). Data modelling was used to estimate the current capacity gap in HD centres. RESULTS From interviews with 218 HCPs, 25% of HD centres are estimated to have the three components required for IT administration (proceduralists, nurses and facilities). On average, 114 patients per centre per year are anticipated to receive intrathecally administered DMTs in the future. At current capacity, six of the sampled centres are estimated to be able to deliver DMTs to all the anticipated patients based on current resources. The estimated waiting time for IT administration at current capacity will average 60 months (5 years) by the second year after DMT availability. CONCLUSION Additional resources are needed in HD centres for future DMTs to be accessible to all anticipated patients. Timely collaboration by the HD community will be needed to address capacity gaps. Healthcare policymakers and payers will need to address costs and navigate challenges arising from country- or region-specific healthcare delivery schemes.

Introduction The parent study was a survey in 28 headache centers (6 countries) which identified five potential root causes for long waiting lists that limit patient access to specialist care. Here we performed an extension of the parent study to increase the panel of centers contacted, the representativeness of the analysis, and the statistical validity of the results, and to explore the role of dedicated headache clinics, triage, and specialized nurses. Methods We conducted a 19-question survey using a sample of 239 headache centers (16 countries). The five-area framework identified in the parent study was confirmed and further developed by describing treatment center archetypes according to their setting (general neurology versus dedicated clinic) and resources available within the center (number of healthcare professional [HCPs] full-time-equivalent positions). Results In total, 474 HCPs were interviewed across 16 countries. The proportion of patients with chronic migraine and episodic migraine varied across centers and countries. There was limited access to specialized centers in this enlarged sample; with global average waiting list of 3.7 months for the first visit and 2.5 months for the follow-up visit. Long waiting lists for headache patient care is a major issue in several countries, with the waiting lists for new patient visits extending up to 14 months. The presence of a dedicated nurse was correlated positively with the use of triage for prioritization of patient access (correlation coefficient: 0.85) and completing migraine diary (0.71). Conclusion This study confirmed differences across treatment center archetypes in terms of patients, waiting lists, level of delegation to nurse, and patient education and compliance, and provides support for the potential benefit of dedicated clinical settings for headache patients. The survey highlighted the potential role of nurses in patient education and waiting list prioritization, consequently benefiting headache centers.

Whilst no disease-modifying-therapies (DMTs) are currently available for Huntington’s disease (HD), the investigational drugs most advanced in clinical development are administered intrathecally, requiring additional resources in HD clinics. We investigated the impact of upcoming DMTs for HD on healthcare systems and the implications of possible resource capacity gaps on access to care.The capacity to perform intrathecal drug administrations was assessed in 35 HD specialist centres from nine countries. Interviews with >170 healthcare professionals were performed and resources available in each HD centre were compared to the predicted amount of future resources that the estimated eligible patient population would need.Only 20% of participating HD teams currently have the required resources to perform intrathecal injec- tions: a skilled ‘proceduralist’, one or more nurses to assist in the procedure, and the appropriate space. When considering all resources available in the hospital, only 17% of HD-specialist clinics are estimated to have enough capacity to serve the eligible population. When simulating the additional referral-in of patients from non-HD-specialised clinics, only 6% of HD clinics have enough capacity.To ensure adequate care, capacity-constrained healthcare systems will need to plan adequately and ensure providers have sufficient training and resources to deliver new intrathecally administered DMTs.kopano.mukelabai@roche.com

Introduction:Migraine is one of the leading reasons for patient access to neurology services. Waiting lists can limit patients’ ability to access specialist care, even at specialised headache centres. Our study aims to investigate this issue, identify possible root causes and also document existing good practices.Methods:We conducted a study in a sample of 28 headache centres and their networks in six countries by performing in-depth interviews with 166 healthcare professionals.Results:The waiting list for new patients and follow-up visits exceeded 3 months in 61% and 36% of centres, respectively. Patients waited on average 6 months for their first consultation, with peaks beyond 12 months. Five areas were identified as common rootcauses:(1) inappropriate referral of patients with low-frequency episodic migraine or patients under acute treatment, (2) lack of triage/priority allocation, (3) limited resource availability or resources dedicated to migraine, (4) limited delegation of activities, and (5) suboptimal management of follow-up visits.Conclusion:Our work highlights a gap between best practices for migraine management proposed in the literature and current real-world practice. Guidelines recommend a “network” approach to bridge different levels of care. Based on our findings, consistency in practice amongst specialised headache clinics and integration with primary care represent an important area for further improvement.