Tuberous Sclerosis Complex: A Survey of Health Care Resource Use and Health Burden

Rentz, Anne M.; Skalicky, Anne; Liu, Zhimei; Wheless, James W.; Dunn, David W.; Frost, Michael; Nakagawa, Jo Anne; Magestro, Matthew; Prestifilippo, Judith

doi:10.1016/j.pediatrneurol.2014.11.013

Cited by 38 publications

(66 citation statements)

References 25 publications

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“…TSC patients often present with a broad spectrum of manifestation profiles impacting multiple organ systems 2,16 , thus, management of this condition is associated with substantial utilization of healthcare resources 23,24,35 . Accordingly, this study found that TSC patients require at least 2-fold more frequent drug prescriptions, procedures, diagnostic tests, and visits to healthcare professionals than the general CPRD population).…”

Section: Discussionmentioning

confidence: 99%

“…A lack of appropriate transition in care may lead to higher costs, as patients may present to emergency services with complications that could have been prevented by pro-active monitoring 22 and management by TSC clinics which are under-utilized 16 . Given the complex and variable nature of TSC as a life-long disease 16 , it is likely to pose a disproportionate economic burden on healthcare services 10,[23][24][25][26] . Therefore, greater understanding of the healthcare resources utilized to manage TSC and potential points of sub-optimal care will enable the delivery of more efficient and effective care to patients.…”

Section: Introductionmentioning

confidence: 99%

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The economic burden of tuberous sclerosis complex in the UK: A retrospective cohort study in the Clinical Practice Research Datalink

Kingswood

Crawford

Johnson

et al. 2016

Journal of Medical Economics

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Background: Tuberous sclerosis complex (TSC) is a multi-system genetic disorder characterized by the development of diverse clinical manifestations. The complexity of this disease is likely to result in substantial challenges and costs in disease management throughout the patient's lifetime. This retrospective database study aims to quantify healthcare resources utilized by TSC patients. Methods: TSC patients in the Clinical Practice Research Datalink linked to the Hospital Episodes Statistics database were identified between January 1987 and June 2013. Analyses were conducted over the most recent 3-year period of data and stratified by pediatric (< 18) and adult patients. Prescriptions, procedures, diagnostic tests, and healthcare encounters were reported in comparison with a matched comparator cohort. Costs and key economic drivers by primary organ system manifestations were also examined. Results: A total of 286 patients with TSC were identified and consistently reported 2-fold greater resource use than the matched presumably healthy controls. Despite this comparatively greater resource use, half of TSC patients did not record any procedures, and 20% of patients did not record any diagnostic tests; however, inpatient hospitalizations were greater for the TSC cohort (3.1 vs 1.3), but length of stay was comparable. TSC patients had costs totaling £12,681 per patient over the 3-year period, a figure 2.7-fold greater than the total costs in the comparator cohort (£4,777). Costs for patients with specific primary manifestations were even greater, with brain manifestations incurring £22,139 per affected patient. Kidney and nervous system manifestations were the main cost drivers. Conclusions: The economic burden of TSC and its impact on NHS healthcare resources is mostly attributable to the broad spectrum of manifestations that develop within multiple organ systems. TSC patients may benefit from co-ordinated care based on their requirement for high numbers of healthcare visits across specialties.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The economic burden of tuberous sclerosis complex in the UK: A retrospective cohort study in the Clinical Practice Research Datalink

Kingswood

Crawford

Johnson

et al. 2016

Journal of Medical Economics

Self Cite

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“…[1,2] The prevalence of TSC worldwide is reported as 1 in 6 000 newborns. [1][2][3][4] Equivalent data from Africa are lacking. In Africa, the burden of disease is dominated by infectious aetiologies.…”

Section: In Practicementioning

confidence: 99%

Tuberous sclerosis complex in the Western Cape, South Africa: The clinical presentation features

et al. 2017

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“…Skin lesions are among the most common manifestations of TSC in adult patients (3, 8). An important point is that absence of seizures in adult patients presenting with TSC-related skin findings should not dampen TSC consideration.…”

Section: Discussionmentioning

confidence: 99%

The Adult Phenotype of Tuberous Sclerosis Complex

Nathan

Burke²,

Trickett³

et al. 2016

Acta Derm Venerol

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Tuberous Sclerosis Complex: A Survey of Health Care Resource Use and Health Burden

Cited by 38 publications

References 25 publications

The economic burden of tuberous sclerosis complex in the UK: A retrospective cohort study in the Clinical Practice Research Datalink

The economic burden of tuberous sclerosis complex in the UK: A retrospective cohort study in the Clinical Practice Research Datalink

Tuberous sclerosis complex in the Western Cape, South Africa: The clinical presentation features

The Adult Phenotype of Tuberous Sclerosis Complex

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