Dataset Information

Personal and societal costs of multiple sclerosis in the UK: A population-based MS Registry study.

ABSTRACT: Objectives:To investigate through survey and data linkage, healthcare resource use and costs (except drugs), including who bears the cost, of multiple sclerosis in the United Kingdom by disease severity and type. Methods:The United Kingdom Multiple Sclerosis Register deployed a cost of illness survey, completed by people with multiple sclerosis and linked this with data within the United Kingdom Multiple Sclerosis Register and from their hospital records. Resource consumption was categorised as being medical or non-medical and costed by National Health Service and social services estimates for 2018. Results:We calculated £509,003 in non-medical costs over a year and £435,488 in medical costs generated over 3 months. People with multiple sclerosis reported self-funding 75% of non-medical costs with non-medical interventions having long-term potential benefits. Costs increased with disability as measured by patient-reported Expanded Disability Status Score and Multiple Sclerosis Impact Scale, with Multiple Sclerosis Impact Scale physical being a more powerful predictor of costs than the patient-reported Expanded Disability Status Score. Two distinct groups were identified: medical and non-medical interventions (n?=?138); and medical interventions only (n?=?399). The medical and non-medical group reported increased disease severity and reduced employment but incurred 80% more medical costs per person than the medical-only group. Conclusions:The importance of disability in driving costs is illustrated with balance between medical and non-medical costs consistent with the United Kingdom health environment. People with multiple sclerosis and their families fund a considerable proportion of non-medical costs but non-medical interventions with longer term impact could affect future medical costs.

SUBMITTER: Nicholas RS

PROVIDER: S-EPMC6977221 | biostudies-literature | 2020 Jan-Mar

REPOSITORIES: biostudies-literature

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Personal and societal costs of multiple sclerosis in the UK: A population-based MS Registry study.

Nicholas Richard S RS Heaven Martin L ML Middleton Rodden M RM Chevli Manoj M Pulikottil-Jacob Ruth R Jones Kerina H KH Ford David V DV

Multiple sclerosis journal - experimental, translational and clinical 20200122 1

<h4>Objectives</h4>To investigate through survey and data linkage, healthcare resource use and costs (except drugs), including who bears the cost, of multiple sclerosis in the United Kingdom by disease severity and type.<h4>Methods</h4>The United Kingdom Multiple Sclerosis Register deployed a cost of illness survey, completed by people with multiple sclerosis and linked this with data within the United Kingdom Multiple Sclerosis Register and from their hospital records. Resource consumption was ...[more]

PMID: 32030197

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Project description:Data on familial recurrence rates of complex diseases such as multiple sclerosis give important hints to aetiological factors such as the importance of genes and environment. By linking national registries, we sought to avoid common limitations of clinic-based studies such as low numbers, poor representation of the population and selection bias. Through the Swedish Multiple Sclerosis Registry and a nationwide hospital registry, a total of 28 396 patients with multiple sclerosis were identified. We used the national Multi-Generation Registry to identify first and second degree relatives as well as cousins, and the Swedish Twin Registry to identify twins of patients with multiple sclerosis. Crude and age corrected familial risks were estimated for cases and found to be in the same range as previously published figures. Matched population-based controls were used to calculate relative risks, revealing lower estimates of familial multiple sclerosis risks than previously reported, with a sibling recurrence risk (?s = 7.1; 95% confidence interval: 6.42-7.86). Surprisingly, despite a well-established lower prevalence of multiple sclerosis amongst males, the relative risks were equal among maternal and paternal relations. A previously reported increased risk in maternal relations could thus not be replicated. An observed higher transmission rate from fathers to sons compared with mothers to sons suggested a higher transmission to offspring from the less prevalent sex; therefore, presence of the so-called 'Carter effect' could not be excluded. We estimated the heritability of multiple sclerosis using 74 757 twin pairs with known zygosity, of which 315 were affected with multiple sclerosis, and added information from 2.5 million sibling pairs to increase power. The heritability was estimated to be 0.64 (0.36-0.76), whereas the shared environmental component was estimated to be 0.01 (0.00-0.18). In summary, whereas multiple sclerosis is to a great extent an inherited trait, the familial relative risks may be lower than usually reported.

Project description:AimTo estimate annual societal costs associated with chemotherapy for early breast cancer in the UK.DesignMixed methods: (a) an incidence-based cost-of-illness model was developed of indirect costs in patients with breast cancer and carers, and estimated from diagnosis through active treatment until death; (b) interviews with stakeholders were also undertaken to understand actual experiences and impacts of these costs.Data sourcesModel data were collated from relevant national data sources covering general population statistics, UK cancer registries, clinical guidelines and published literature, and patient survey data. Patient and staff views were collected through semistructured interviews.ParticipantsModel: patients with early breast cancer receiving systemic anticancer therapy in the UK. Interviews were undertaken with women who had chemotherapy and medical practitioners involved in breast cancer care.ResultsTotal costs of chemotherapy in the UK economy are over £248 million. Societal productivity losses amount to £141.4 million, which includes £3.2 million associated with premature mortality, short-term and long-term work absence (£28.6 million and £105 million, respectively). £3.4 million is associated with mortality losses from secondary malignancies due to adjuvant chemotherapy. A further £1.1 million in lost productivity arises from informal care provision. Out-of-pocket costs per round of chemotherapy account for £4.2 million, or an annual average of almost £1100 per patient. Interview findings support the cost burden modelled and also highlight the impact on cognitive function of patients and how this could increase the cost burden to patients, their families and wider society. In addition, estimated costs for carer emotional well-being are £82 million in lost quality of life.ConclusionChemotherapy use carries significant indirect costs for society, as well as patients and their carers. These wider costs and societal perspective should be considered by commissioners to ensure chemotherapy is better targeted at those who most need it and to avoid placing unnecessary costs on patients, their caregivers and wider society.

Dataset Information

Personal and societal costs of multiple sclerosis in the UK: A population-based MS Registry study.

Publications

Personal and societal costs of multiple sclerosis in the UK: A population-based MS Registry study.

Similar Datasets

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