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Social/economic costs and health-related quality of life in patients with rare diseases in Europe

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Listed:
  • Julio López-Bastida

    (University of Castilla-La Mancha
    Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC))

  • Juan Oliva-Moreno

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    University of Castilla-La Mancha)

  • Renata Linertová

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    Fundación Canaria de Investigación Sanitaria (FUNCANIS))

  • Pedro Serrano-Aguilar

    (Red de Investigación en Servicios Sanitarios en Enfermedades Crónicas (REDISSEC)
    Evaluation and Planning Service at Canary Islands Health Service (SESCS))

Abstract

No abstract is available for this item.

Suggested Citation

  • Julio López-Bastida & Juan Oliva-Moreno & Renata Linertová & Pedro Serrano-Aguilar, 2016. "Social/economic costs and health-related quality of life in patients with rare diseases in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 1-5, April.
    • Handle: RePEc:spr:eujhec:v:17:y:2016:i:1:d:10.1007_s10198-016-0780-7
    DOI: 10.1007/s10198-016-0780-7
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    References listed on IDEAS

    as
    1. Julio López-Bastida & Renata Linertová & Juan Oliva-Moreno & Manuel Posada-de-la-Paz & Pedro Serrano-Aguilar & Panos Kanavos & Domenica Taruscio & Arrigo Schieppati & Georgi Iskrov & Petra Baji & Clau, 2016. "Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 17(1), pages 99-108, April.
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    Cited by:

    1. L. M. Peña-Longobardo & J. Oliva-Moreno & C. Fernández-Rodriguez, 2023. "The effect of hepatitis C—associated premature deaths on labour productivity losses in Spain: a ten-year analysis," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(8), pages 1271-1283, November.
    2. Raúl Del Pozo-Rubio & Pablo Moya-Martínez & Marta Ortega-Ortega & Juan Oliva-Moreno, 2020. "Shadow and extended shadow cost sharing associated to informal long-term care: the case of Spain," Health Economics Review, Springer, vol. 10(1), pages 1-12, December.
    3. Valentin Brodszky & Zsuzsanna Beretzky & Petra Baji & Fanni Rencz & Márta Péntek & Alexandru Rotar & Konstantin Tachkov & Susanne Mayer & Judit Simon & Maciej Niewada & Rok Hren & László Gulácsi, 2019. "Cost-of-illness studies in nine Central and Eastern European countries," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 155-172, June.
    4. Alvaro Rafael Villar Hernández & Fernando Molero Alonso & Álvaro Jesús Aguado Marín & Manuel Posada de la Paz, 2022. "Transcultural Validation of a Spanish Version of the Quality of Life in Epidermolysis Bullosa Questionnaire," IJERPH, MDPI, vol. 19(12), pages 1-11, June.
    5. Takeya Adachi & Ayman W. El-Hattab & Ritu Jain & Katya A. Nogales Crespo & Camila I. Quirland Lazo & Maurizio Scarpa & Marshall Summar & Duangrurdee Wattanasirichaigoon, 2023. "Enhancing Equitable Access to Rare Disease Diagnosis and Treatment around the World: A Review of Evidence, Policies, and Challenges," IJERPH, MDPI, vol. 20(6), pages 1-37, March.
    6. Michela Meregaglia & Elena Nicod & Michael Drummond, 2023. "The estimation of health state utility values in rare diseases: do the approaches in submissions for NICE technology appraisals reflect the existing literature? A scoping review," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 24(7), pages 1151-1216, September.
    7. Isaac Aranda-Reneo & Luz María Peña-Longobardo & Juan Oliva-Moreno & Svenja Litzkendorf & Isabelle Durand-Zaleski & Eduardo F. Tizzano & Julio López-Bastida, 2020. "The Burden of Spinal Muscular Atrophy on Informal Caregivers," IJERPH, MDPI, vol. 17(23), pages 1-12, December.
    8. Chris Sampson;Martina Garau, 2019. "How Should We Measure Quality of Life Impact in Rare Disease? Recent Learnings in Spinal Muscular Atrophy," Briefing 002146, Office of Health Economics.
    9. Marialuisa Saviano & Sergio Barile & Francesco Caputo & Mattia Lettieri & Stefania Zanda, 2019. "From Rare to Neglected Diseases: A Sustainable and Inclusive Healthcare Perspective for Reframing the Orphan Drugs Issue," Sustainability, MDPI, vol. 11(5), pages 1-21, March.
    10. Javier Güeita-Rodriguez & Pilar Famoso-Pérez & Jaime Salom-Moreno & Pilar Carrasco-Garrido & Jorge Pérez-Corrales & Domingo Palacios-Ceña, 2020. "Challenges Affecting Access to Health and Social Care Resources and Time Management among Parents of Children with Rett Syndrome: A Qualitative Case Study," IJERPH, MDPI, vol. 17(12), pages 1-16, June.
    11. López-Bastida, J. & Ramos-Goñi, J.M. & Aranda-Reneo, I. & Trapero-Bertran, M. & Kanavos, P. & Rodriguez Martin, B., 2019. "Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?," Health Policy, Elsevier, vol. 123(2), pages 152-158.
    12. Yllka Kodra & Marianna Cavazza & Marta de Santis & Andrea Guala & Maria-Elena Liverani & Patrizio Armeni & Maura Masini & Domenica Taruscio, 2020. "Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome," IJERPH, MDPI, vol. 17(16), pages 1-14, August.
    13. Alicia Aurora Rodríguez & Óscar Martínez & Imanol Amayra & Juan Francisco López-Paz & Mohammad Al-Rashaida & Esther Lázaro & Patricia Caballero & Manuel Pérez & Sarah Berrocoso & Maitane García & Paul, 2021. "Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease," IJERPH, MDPI, vol. 18(6), pages 1-16, March.
    14. Alicia Aurora Rodríguez & Imanol Amayra & Juan Francisco López-Paz & Oscar Martínez & Maitane García & Mónika Salgueiro & Mohammad Al-Rashaida & Paula María Luna & Paula Pérez-Nuñez & Nicole Passi & I, 2022. "The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study," IJERPH, MDPI, vol. 19(19), pages 1-15, September.
    15. Patrizio Armeni & Marianna Cavazza & Entela Xoxi & Domenica Taruscio & Yllka Kodra, 2021. "Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal," IJERPH, MDPI, vol. 18(3), pages 1-18, January.
    16. Petra Baji & Dominik Golicki & Valentina Prevolnik-Rupel & Werner B. F. Brouwer & Zsombor Zrubka & László Gulácsi & Márta Péntek, 2019. "The burden of informal caregiving in Hungary, Poland and Slovenia: results from national representative surveys," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 20(1), pages 5-16, June.
    17. Luz María Peña-Longobardo & Isaac Aranda-Reneo & Juan Oliva-Moreno & Svenja Litzkendorf & Isabelle Durand-Zaleski & Eduardo Tizzano & Julio López-Bastida, 2020. "The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe," IJERPH, MDPI, vol. 17(16), pages 1-12, August.

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