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Special Report

The invisible hands made visible: recognizing the value of informal care in healthcare decision-making

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Pages 557-561 | Published online: 09 Jan 2014

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Andrea Bracco & Marieke Krol. (2013) Economic evaluations in European reimbursement submission guidelines: current status and comparisons. Expert Review of Pharmacoeconomics & Outcomes Research 13:5, pages 579-595.
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Quitterie Roquebert & Marianne Tenand. (2023) Informal care at old age at home and in nursing homes: determinants and economic value. The European Journal of Health Economics.
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Leonarda G. M. Bremmers, Leona Hakkaart-van Roijen, Eleonora S. Gräler, Carin A. Uyl-de Groot & Isabelle N. Fabbricotti. (2022) How Do Shifts in Patients with Mental Health Problems’ Formal and Informal Care Utilization Affect Informal Caregivers?: A COVID-19 Case Study. International Journal of Environmental Research and Public Health 19:24, pages 16425.
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Milagros Rico-Blázquez, Víctor Quesada-Cubo, Elena Polentinos-Castro, Raquel Sánchez-Ruano, M Ángeles Rayo-Gómez, Isabel del Cura-González, Milagros Rico-Blázquez, Rosario Almena-Martín, Ángeles Almodovar-López, Julia Alonso-Arcas, Elvira Álvarez-Navarro, Henar Álvarez-Santos, Begoña Andrés-Alonso, Virginia Antolín-Díaz, Mercedes Araujo-Calvo, Encarnación Ayuso-Gil, Cynthia A. Barbero-Macías, Inés Bermejo-Mayoral, Ana Berninches-Heredero, Lourdes Botanes-Peñafiel, Lorena Cámara-González, Isabel Careaga-González, Sergio de-Casas-Albendea, Carmen Castilla-Álvarez, Belén Castro-Sánchez, Noelia Castro-Torrado, María J. Clemente-del-Castillo, Pilar Dávila-Moriña, Juana Díaz-de-Espada-León, Analía Domínguez-González, Lorena Domínguez-Pérez, Dolores Domínguez-Puebla, Mónica Escribano-Zaera, Luisa Escudero-Muñoz, Raquel Fernández-Arnaldo, Teresa Fernández-del-Campo-Coca, Mercedes Fernández-Ortega, Rafaela Fernández-Rodríguez, Virginia García-Campo, Isabel García-del-Río, María J. García-Garrudo, Elena García-Gómez-de-Cardiñanos, Juan García-Ruíz, Petra García-San, Jorge Geanini-Torres, Rosa Gómez-Quevedo, Eva Gómez-Robledo, Carmen Gómez-Pesquera, Begoña González-Fernández, Aranzazu González-Valls, Natalie Harris-de-la-Vega, Susana Herrero-Yusta, Sonia de-la-Iglesia-Moreno, Silvia Jiménez-Maillo, Luisa Juárez-Zapatero, Raquel Juez-Pimienta, Francisca Lara-Bueno, Pilar Lasala-Raso, Lucía Letón-Gutiérrez, Margarita Leza-Leza, Raquel López-del-Cid, Laura López-Kölmer, Paz Lozano-Fernández, Elisa López-Serrano, Elena Martín-Ávila, María Martín-Martín, Sara Martín-Martínez, Anunciación Martínez-Arroyo, Carmen Martínez-Palomo, Cristina Martínez-Ruíz, Pilar Martínez-Zafra, Alicia Mateo-Madurga, Natalia Méndez-Junco, Antonia Minguito-Lobos, Paloma Molina-Gómez, Marina Moreno-Collado, Ana B. Moreno-Moreno, Cristina Olmos-Sancho, Remedios Peláez-Toré, Raquel Pérez-Barrios, Pérez-Barrios Pérez-García, Esmeralda Pulido-López, Ana B. Ramírez-Puerta, Luz del Rey-Moya, Araceli Rivera-Álvarez, Paz Rodrigo-Rodrigo, María N. Ruiz-Martín, AnaI Serna-Urnicia, Josefa Sidera-Jiménez, Encarnación Tornay-Muñoz, Laura Villanova-Cuadra, Isabel Villanueva-Alameda, Cristina Villanueva-Sanz & Emiliana Villares-Motino. (2022) Health-related quality of life in caregivers of community-dwelling individuals with disabilities or chronic conditions. A gender-differentiated analysis in a cross-sectional study. BMC Nursing 21:1.
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Diana Pacheco Barzallo, Rina Hernandez, Mirjam Brach & Armin Gemperli. (2021) The economic value of long‐term family caregiving. The situation of caregivers of persons with spinal cord injury in Switzerland. Health & Social Care in the Community 30:5.
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Selma C.W. Musters, Sani Kreca, Susan van Dieren, Hanneke van der Wal-Huisman, Johannes A. Romijn, Wendy Chaboyer, Els J.M. Nieveen van Dijkum & Anne M. Eskes. (2022) Activating Relatives To get Involved in care after Surgery (ARTIS): Study Protocol for a Prospective Cohort Study (Preprint). JMIR Research Protocols.
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Emanuele Blasioli & Elkafi Hassini. (2022) e-Health Technological Ecosystems: Advanced Solutions to Support Informal Caregivers and Vulnerable Populations During the COVID-19 Outbreak. Telemedicine and e-Health 28:2, pages 138-149.
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Wanyue Dong, Anthony B. Zwi, Chi Shen, Yue Wu & Jianmin Gao. (2021) Exploring the relationship between functional limitations of the older adults and the health-related quality of life of their spouse in Shaanxi Province, China. Health and Quality of Life Outcomes 19:1.
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Wenwei Liu, Huimin Zhang, Suwei Yuan & Tongzhou Lyu. (2021) Well‐being losses by providing informal care to elderly people: Evidence from 310 caregivers in Shanghai, China. Health & Social Care in the Community 29:3, pages 694-702.
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Petra Baji, Werner B. F. Brouwer, Job van Exel, Dominik Golicki, Valentina Prevolnik Rupel, Zsombor Zrubka, László Gulácsi, Valentin Brodszky, Fanni Rencz & Márta Péntek. (2020) Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary. Quality of Life Research 30:2, pages 629-641.
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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. International Journal of Environmental Research and Public Health 17:23, pages 8989.
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Petra Baji, Miklós Farkas, Dominik Golicki, Valentina Prevolnik Rupel, Renske Hoefman, Werner B. F. Brouwer, Job van Exel, Zsombor Zrubka, László Gulácsi & Márta Péntek. (2020) Development of Population Tariffs for the CarerQol Instrument for Hungary, Poland and Slovenia: A Discrete Choice Experiment Study to Measure the Burden of Informal Caregiving. PharmacoEconomics 38:6, pages 633-643.
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S. Arora, S. Goodall, R. Viney & S. Einfeld. (2019) Health‐related quality of life amongst primary caregivers of children with intellectual disability. Journal of Intellectual Disability Research 64:2, pages 103-116.
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Oliver Daniel Mowforth, Benjamin Marshall Davies & Mark Reinhard Kotter. (2019) Quality of Life Among Informal Caregivers of Patients With Degenerative Cervical Myelopathy: Cross-Sectional Questionnaire Study. Interactive Journal of Medical Research 8:4, pages e12381.
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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 20:S1, pages 5-16.
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Juan Oliva-Moreno, Luz María Peña-Longobardo, Leticia García-Mochón, María del Río Lozano, Isabel Mosquera Metcalfe & María del Mar García-Calvente. (2019) The economic value of time of informal care and its determinants (The CUIDARSE Study). PLOS ONE 14:5, pages e0217016.
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Renske J. Hoefman, Job van Exel & Werner B. F. Brouwer. (2018) The Monetary Value of Informal Care: Obtaining Pure Time Valuations Using a Discrete Choice Experiment. PharmacoEconomics 37:4, pages 531-540.
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Sheena Arora, Stephen Goodall, Rosalie Viney & Stewart Einfeld. (2018) Using Discrete-Choice Experiment Methods to Estimate the Value of Informal Care: The Case of Children with Intellectual Disability. PharmacoEconomics 37:4, pages 501-511.
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Filomena Pinto, Eduardo Fernandes, Daniel Virella, Alexandre Abrantes & Maria Teresa Neto. (2019) Born Preterm: A Public Health Issue. Portuguese Journal of Public Health 37:1, pages 38-49.
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Ana Patricia Marques, Antonio Filipe Macedo, Laura Hernandez-Moreno, Pedro Lima Ramos, Thomas Butt, Gary Rubin & Rui Santana. (2018) The use of informal care by people with vision impairment. PLOS ONE 13:6, pages e0198631.
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Juan Oliva-MorenoLuz María Peña-LongobardoJavier MarJaime MasjuanStéphane SoulardNuria Gonzalez-RojasVirginia BecerraMiguel Ángel CasadoCovadonga TorresMaría YebenesManuel QuintanaJose Alvarez-Sabín. (2018) Determinants of Informal Care, Burden, and Risk of Burnout in Caregivers of Stroke Survivors. Stroke 49:1, pages 140-146.
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Renske J. Hoefman, Job van Exel & Werner B. F. Brouwer. (2016) Measuring Care-Related Quality of Life of Caregivers for Use in Economic Evaluations: CarerQol Tariffs for Australia, Germany, Sweden, UK, and US. PharmacoEconomics 35:4, pages 469-478.
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Juan Oliva-Moreno, Marta Trapero-Bertran, Luz Maria Peña-Longobardo & Raúl del Pozo-Rubio. (2016) The Valuation of Informal Care in Cost-of-Illness Studies: A Systematic Review. PharmacoEconomics 35:3, pages 331-345.
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Renske Hoefman, Hareth Al-Janabi, Nikki McCaffrey, David Currow & Julie Ratcliffe. (2014) Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations. Quality of Life Research 24:5, pages 1255-1273.
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Maureen A. Lefton-Greif, Sande O. Okelo, Jennifer M. Wright, Joseph M. Collaco, Sharon A. McGrath-Morrow & Michelle N. Eakin. (2014) Impact of Children?s Feeding/Swallowing Problems: Validation of a New Caregiver Instrument. Dysphagia 29:6, pages 671-677.
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Renske J. Hoefman, Job van Exel & Werner Brouwer. (2013) How to Include Informal Care in Economic Evaluations. PharmacoEconomics 31:12, pages 1105-1119.
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Marieke Krol, Werner Brouwer & Frans Rutten. (2013) Productivity Costs in Economic Evaluations: Past, Present, Future. PharmacoEconomics 31:7, pages 537-549.
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Eve Wittenberg & Lisa A. Prosser. (2013) Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature. PharmacoEconomics 31:6, pages 489-500.
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Eve Wittenberg, Grant A. Ritter & Lisa A. Prosser. (2012) Evidence of Spillover of Illness among Household Members. Medical Decision Making 33:2, pages 235-243.
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Renske J Hoefman, Job van Exel & Werner BF Brouwer. (2013) Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument. Health and Quality of Life Outcomes 11:1, pages 173.
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Emmanouil Mentzakis, Paul McNamee, Mandy Ryan & Matthew Sutton. (2011) Valuing Informal Care Experience: Does Choice of Measure Matter?. Social Indicators Research 108:1, pages 169-184.
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Jan-Marc Hodek, J-Matthias von der Schulenburg & Thomas Mittendorf. (2011) Measuring economic consequences of preterm birth - Methodological recommendations for the evaluation of personal burden on children and their caregivers. Health Economics Review 1:1.
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