Toward earlier diagnosis and treatment of rare neurological disorders: the value of coordinated care and specialist centers

Giunti, Paola; Morris, Stephen; Relja, Maja; Pastores, Gregory M.; Quoidbach, Vinciane

doi:10.3325/cmj.2019.60.156

Cited by 5 publications

(2 citation statements)

References 3 publications

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Section: Introductionmentioning

confidence: 99%

“…Early intervention in both the diagnosis and management of patients with the ataxia is critical in working towards maintaining functional ability and therefore independence. Specialist ataxia centres (SAC) can provide the necessary clinical expertise and coordination of care and therefore address the specific needs of ataxia patients [9]. This ataxia study aims to examine health gains resulting from specialist healthcare interventions in comparison with non-specialised ones and converge data evidence to policy recommendations on how to improve the care pathway [10].…”

Section: Introductionmentioning

confidence: 99%

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Patient pathways for rare diseases in Europe: ataxia as an example

Vallortigara,

Greenfield,

Hunt

et al. 2023

Orphanet J Rare Dis

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Background Progressive ataxias are rare and complex neurological disorders that represent a challenge for the clinicians to diagnose and manage them. This study explored the patient pathways of individuals attending specialist ataxia centres (SAC) compared with non–specialist settings. We investigated specifically how diagnosis was reached, the access to healthcare services, treatments, and care satisfaction. The focus of this study was on early intervention, coordination of treatment to understand the care provision in different countries. Methods A patient survey was done in the UK, Germany and Italy to gather information about diagnosis and management of the ataxias in specialist (SAC) and non-specialist settings, utilisation of other primary and secondary health care services, and patients’ satisfaction of received treatment. Results Patients gave positive feedback about the role of SAC in understanding their condition, ways to manage their ataxia (p < 0.001; UK) and delivering care adapted to their needs (p < 0.001; UK), in coordinating referrals to other healthcare specialists, and in offering opportunities to take part in research studies. Similar barriers for patients were identified in accessing the SACs among the selected countries, UK, Germany, and Italy. Conclusions This study provides crucial information about the ataxia patients care pathways in three European countries. Overall, the results showed a trend in patients’ satisfaction being better in SAC compared to non-SAC. The outcomes can be used now for policy recommendations on how to improve treatment and care for people with these very rare and complex neurological diseases across Europe.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Patient pathways for rare diseases in Europe: ataxia as an example

Vallortigara,

Greenfield,

Hunt

et al. 2023

Orphanet J Rare Dis

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Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey

Morris,

Vallortigara,

Greenfield

et al. 2023

Orphanet J Rare Dis

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Background Little is known about the costs of treating ataxia and whether treatment at a specialist ataxia centre affects the cost of care. The aim of this study was to investigate whether patients who attended specialist ataxia centres in three European countries reported differences in their health care use and costs compared with patients who did not attend a specialist ataxia centre. We compared mean resource use and health service costs per patient affected by ataxia in the United Kingdom, Italy and Germany over a 12-month period. Data were obtained from a survey distributed to people with ataxia in the three countries. We compared mean resource use for each contact type and costs, stratifying patients by whether they were currently attending a specialist ataxia centre or had never attended one. Results Responses were received from 181 patients from the United Kingdom, 96 from Italy and 43 from Germany. Differences in the numbers of contacts for most types of health service use between the specialist ataxia centre and non-specialist ataxia centre groups were non-significant. In the United Kingdom the mean total cost per patient was €2209 for non-specialist ataxia centre patients and €1813 for specialist ataxia centre patients (P = 0.59). In Italy these figures were €2126 and €1971, respectively (P = 0.84). In Germany they were €2431 and €4087, respectively (P = 0.19). Inpatient stays made the largest contribution to total costs. Conclusions Within each country, resource use and costs were broadly similar for specialist ataxia centre and non-specialist ataxia centre groups. There were differences between countries in terms of health care contacts and costs.

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Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey

Morris

Vallortigara

Greenfield

et al. 2023

Preprint

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Background Little is known about the costs of treating ataxia and whether treatment at a specialist ataxia centre affects the cost of care. The aim of this study was to investigate whether patients who attended specialist ataxia centres in three European countries reported differences in their health care use and costs compared with patients who did not attend a specialist ataxia centre. We compared mean resource use and health service costs per patient affected by ataxia in the United Kingdom, Italy and Germany over a 12-month period. Data were obtained from a survey distributed to people with ataxia in the three countries. We compared mean resource use for each contact type and costs, stratifying patients by whether they were currently attending a specialist ataxia centre or had never attended one.Results Responses were received from 181 patients from the United Kingdom, 96 from Italy and 43 from Germany. Differences in the numbers of contacts for most types of health service use between the specialist ataxia centre and non-specialist ataxia centre groups were non-significant. In the United Kingdom the mean total cost per patient was €2209 for non-specialist ataxia centre patients and €1813 for specialist ataxia centre patients (P = 0.59). In Italy these figures were €2126 and €1971, respectively (P = 0.84). In Germany they were €2431 and €4087, respectively (P = 0.19). Inpatient stays made the largest contribution to total costs.Conclusions Within each country, resource use and costs were broadly similar for specialist ataxia centre and non-specialist ataxia centre groups. There were differences between countries in terms of health care contacts and costs.

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Toward earlier diagnosis and treatment of rare neurological disorders: the value of coordinated care and specialist centers

Cited by 5 publications

References 3 publications

Patient pathways for rare diseases in Europe: ataxia as an example

Patient pathways for rare diseases in Europe: ataxia as an example

Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey

Impact of specialist ataxia centres on health service resource utilisation and costs across Europe: cross-sectional survey

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