Calidad de vida en personas con hemofilia: una revisión de la literatura
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Palacios, Ximena |
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03/12/2013
31/12/1969
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Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria. Introduction: Hemophilia is a rare disease, however, treatment development for hemophilic patients in last decades have generated changes in their quality of life. This has resulted in several researches about it. Objective: Review literature about quality of life in hemophilic patients, produced in 2008-2012. Method: Some scientific data bases were consulted using as keywords "hemophilia" and "quality of life". The information was collected and organized according to proposed objectives in physiological, psychosocial and cultural "negative factors" and "protecting factors" of quality of life; General or specific "Quality of life assessment tools"; and empirical background from the last five years about assessment or treatment of quality of life. Results: Overall, available information about the epidemiologic behavior of hemophilia is limited. Interest for protecting and negative factors is mainly of physiological type, although psychosocial and cultural factors were found, indicating the importance of further research on the subject. There are few quality of life specific assessment tools for hemophilia. Empirical background focuses on assessment. Conclusion: Hemophilic patients’ quality of life study deserves to be addressed in an interdisciplinary way. |
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application/pdf |
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spa |
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Escuela de Medicina y Ciencias de la Salud |
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info:eu-repo/semantics/embargoedAccess |
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reponame:Repositorio Institucional EdocUR instname:Universidad del Rosario Bahls, S., Campos, F. R., Keller, J., Sabbag, A., Gusso, A. E., De Assunção, D. C., (…), & Echterhoff, R. (2006). Levantamento de sintomas depressivos em crianças e adolescentes com hemofilia. Journal Brasileiro Psiquiatria. 55(1), 20-25. Recuperado de http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0047-20852006000100003&lng=en&tlng=pt. 10.1590/S0047-20852006000100003 Barlow, J. H., Stapley, J., Ellard, D. R., & Gilchrist, M. (2007). Information and self-management needs of people living with bleeding disorders: a survey. Haemophilia, 13(3), 264-270. doi: 10.1111/j.1365-2516.2007.01444.x Barry, T., & Elander, J. (2002). Pain coping strategies among patients with haemophilia. Psychology, Health & Medicine. 7(3), 271-281. doi: 10.1080/13548500220139430 Bermeo, S. M., Silva, C. T., Fonseca, D. J. y Restrepo, C. M. (2007). Hemofilia: Diagnóstico molecular y alternativas de tratamiento. Colombia Médica, 38(3), 308-315. Recuperado de http://www.bioline.org.br/pdf?rc07054 Bok, S., & Lappé, M. (1974). Case Studies in Bioethics: The Threat of Hemophilia. The Hastings Center Report, 4(2), 8-10. doi: 10.2307/3560334 Bolton-Maggs, P., & Pasi, J. (2003). Haemophilias A and B. The Lancet, 361(9371), 1801-1809. Recuperado de http://www.freewebs.com/haemophiliaa-unsw/Haemophilias%20A%20and%20B.pdf Brown, T., Lee, W., Joshi, A., & Pashos, C. (2009). Health-related quality of life and productivity impact in haemophilia patients with inhibitors. Haemophilia, 15(4), 911-917. doi: 10.1111/j.1365-2516.2009.02032.x Bullinger, M., & von Mackensen, S. (2008). Psycho-social Determinants of Quality of Life in Children and Adolescents with Haemophilia- A Cross-Cultural Approach. Clinical Psychology and Psychotherapy, 15(3), 164-172. doi: 10.1002/cpp.569. Bullinger, M., & Von Mackensen, S. (2003). Quality of life in children and families with bleeding disorders. Journal of Pediatric Hematology Oncology, 25(1), 64-67. Recuperado de http://www.ncbi.nlm.nih.gov/pubmed/14668644 Buxbaum, N. P., Ponce, M., Saidi, P., & Michaels, L. A. (2010). Psychosocial correlates of physical activity in adolescents with haemophilia. Haemophilia, 16(4), 656–661. doi: 10.1111/j.1365-2516.2010.02217.x Cassis, F. R. M. Y., Querol, F. Forsyth, A,. & Iorios, A. (2012). Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia, 18(3), 101-114. doi: 10.1111/j.1365-2516.2011.02683.x Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699-706. doi: 10.1111/j.1365-2788.2005.00738.x Cuesta, R. y Gómez, A. (2012). Hemofilia, la importancia de la fisioterapia en un trastorno de la coagulación poco común, pero conocido. Fisioterapia, 34(3), 97-98. doi: 10.1016/j.ft.2012.03.001 Dávila, M. E. (2007). Características clínicas y sobrevida de personas hemofílicas atendidas en el Centro Nacional de Sangre de Nicaragua, 2000-2006. (Tesis de Maestría) Universidad Nacional Autónoma de Nicaragua, Managua, Nicaragua. Recuperado de http://cedoc.cies.edu.ni/digitaliza/t389/doc-contenido.pdf Del Rincón, C., Remor, E. y Arranz, P. (2007). Estudio psicométrico preliminar de la versión española del Pediatric Inventory for Parents (PIP). International Journal of Clinical and Health Psychology, 7 (2), 435-452. Recuperado de http://www.redalyc.org/articulo.oa?id=33717060012 Den Uijl I., Fischer, K., van der Bom, J., Grobbee, D., Rosendaal, F., & Plug, I. (2009). Clinical outcome of moderate haemophilia compared with severe and mild haemophilia. Haemophilia, 15(1), 83-90. doi: 10.1111/j.1365-2516.2008.01837.x Duarte, M., Llinás, A. y Pauwels, A. (2005). Hemofilia. En Chalem, F.; Campos, J.; Esguerra, R. y Chalem, P. (Eds.), Tratado de Medicina Interna (pp. 1798- 1806). Colombia: Médica Celsus. Elander, J., Robinson, G., Mitchell, K., & Morris, J. (2009). An assessment of the relative influence of pain coping, negative thoughts about pain, and pain acceptance on health-related quality of life among people with hemophilia. Pain, 145(1-2), 169-175. doi: 10.1016/j.pain.2009.06.004 Fogarty, P. F. (2011). Biological Rationale for New Drugs in the Bleeding Disorders Pipeline. American Society of Hematology, 2011(1), 397-404. doi: 10.1182/asheducation-2011.1.397. Fontes, E. M. A., Amorim, L., Carvalho, S., & Farah, M. B. (2001). Hemophilia Care in the state of Rio de Janeiro, Brazil. Revista panamericana do Salud Publica, 13(2-3), 124-128. Recuperado de http://www.scielosp.org/pdf/rpsp/v13n2-3/15727.pdf Fuentes, F., Palomo, G., Leiva, O. y Fuentes, E. (2012). Evaluación de la calidad de vida en pacientes hemofílicos de Curicó, Región del Maule. Revista Médica del Maule, 28(1), 21-28. Recuperado de http://www.sciwords.org/index.php/revmedmaule/article/view/3/3 Franchini, M., & Manucci, P. M. (2009). Co-morbidities and quality of life in elderly persons with haemophilia. British Journal of Haematology, 148(4), 522-533. doi: 10.1111/j.1365-2141.2009.08005.x Franchini, M., & Manucci, P. M. (2012). Past, present and future of haemophilia: a narrative review. Orphanet Journal of Rare Diseases, 7(24), 1-8. doi: 10.1186/1750-1172-7-24 Fructuoso, M., Castro, R., Oliveira, I., Prata, C., & Morgado, T. (2011). Quality of life in chronic kidney disease. Revista Nefrología, 31(1), 91-96. Recuperado de http://www.revistanefrologia.com/modules.php?name=articulos&idarticulo=10483&idlangart=EN Geerts E, van de Wiel, H., & Tamminga R., (2008). A pilot study on the effects of the transition of paediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness related distress and health-related quality of life. Haemophilia, 14(5), 1007-1013. doi: 10.1111/j.1365-2516.2008.01798.x Ghanizadeh, A., & Baligh-Jahromi, P. (2009). Depression, anxiety and suicidal behavior in children and adolescents with haemophilia. Haemophilia, 15(2), 528–532. doi: 10.1111/j.1365-2516.2008.01971.x Gringeri A., Mantovani L. G., Scalone L., & Mannucci P. M., (2003). Cost of care and quality of life for patients with hemophilia complicated by inhibitors: the COCIS Study Group. Blood, 102(7), 2358-2363. doi: 10.1182/blood-2003-03-0941 Haas, B. K. (1999). A multidisciplinary concept analysis of quality of life. West Journal of Nursing Research, 21(6), 728-742. doi: 10.1177/01939459922044153 Hartl, H., Reitter, S., Eidher, U., Ramschak, H., Ay, C., & Pabinger, I. (2008). The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs. Haemophilia, 14(4), 703-708. doi: 10.1111/j.1365-2516.2008.01684.x Hoots, W., Ebbesen, L., Konkle, B., Auerswald, G., Roberts, H., Weatherall, J., Ferran, J., & Ljung, R. (2008). Secondary prophylaxis with recombinant activated factor VII improves health-related quality of life of haemophilia patients with inhibitors. Haemophilia, 14(3), 466-475. doi: 10.1111/j.1365-2516.2008.01654.x Humphries, T. H., & Kessler, C. M. (2012). The challenge of pain evaluation in haemophilia: can pain evaluation and quantification be improved by using pain instruments from other clinical situations? Haemophilia, 19(2), 181-187. doi: 10.1111/hae.12023 Isidro de Pedro, A. I. (2002). Afrontamiento y mejora de la calidad de vida en afectados de hemofilia. Intervención Psicosocial, 11(3), 333-347. Recuperado de http://www.redalyc.org/articulo.oa?id=179818139006 Janse, A. J., Sinnema, G., Uiterwaal, C. S. P. M., Kimpen, J. L. L., & Gemke, R. J. B. J. (2008). Quality of life in chronic illness: children, parents and paediatricians have different, but stable perceptions. Acta Paediatrica, 97(8), 1118-1124. doi: 10.1111/j.1651-2227.2008.00847.x Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain—a critical-review of the literature. Pain, 47(3), 249–283. doi: 10.1016/0304-3959(91)90216-K Kaplan, R. M., & Ries, A. L. (2007). Quality of Life: Concept and Definition. Journal of Chronic Obstructive Pulmonary. Disease, 4(3), 263-271. Doi: 10.1080/15412550701480356 Khawaji, M., Astermark, J., & Berntorp, E. (2012). Lifelong prophylaxis in a large cohort of adult patients with severe haemophilia: a beneficial effect on orthopaedic outcome and quality of life. European Journal of Haematology, 88(4), 329-335. doi: 10.1111/j.1600-0609.2012.01750.x Klamroth, R., Pollman, H., Hermans, C.; Faradji, A., Yarlas, A., Epstein, J., & Mewenstein, B. (2011). The relative burden of haemophilia A and the impact of target joint development on health-related quality of life: results from the ADVATE Post-Authorization Safety Surveillance (PASS) study. Haemophilia, 17(3), 412-421. doi: 10.1111/j.1365-2516.2010.02435.x Knobe, K., & Berntorp, E. (2011). Haemophilia and joint disease: pathophysiology, evaluation, and management. Journal of Comorbidity, 1(1), 51-59. Recuperado de http://jcomorbidity.com/index.php/test/article/view/2/8 Koller, M., & Lorenz, W. (2003). Survival of the quality of life concept. British Journal of Surgery, 90(10), 1175-1177. doi: 10.1002/bjs.4351 Kruse-Jarres, R. (2011). Current Controversies in the Formation and Treatment of Alloantibodies to Factor VIII in Congenital Hemophilia A. American Society of Hematology, 2011(1), 407-412. doi 10.1182/asheducation-2011.1.407. Lambing, A., Kohn-converse, B., Hanagavadi, S., & Varma V. (2012). Use of acupuncture in the management of chronic haemophilia pain. Haemophilia, 18(4), 613-617. doi: 10.1111/j.1365-2516.2012.02766.x Lee, C. A., Berntorp, E. E., & Hoots, W. K. (2010). Textbook of Hemophilia. (2a ed.) Reino Unido: Wiley-Blackwell. Lindvall, K., von Mackensen, S., & Berntorp, E. (2012). Quality of life in adult patients with haemophilia – a single centre experience from Sweden. Haemophilia, 18(4), 527-531. doi: 10.1111/j.1365-2516.2012.02765.x Llewellyn, C. D., Miners, A. H., Lee, C. A., Harrington, C., & Weinman, J. (2003). The Illness perceptions and treatment beliefs of individuals with severe haemophilia and their role in adherence to home treatment. Psychology and Health, 18(2), 185-200. doi: 10.1080/0887044031000098198 McDaniel, R.W., & Bach, C. A. (1994). Quality of life: a concept analysis. Rehabilitation Nursing Research, 3(1), 18–22. McKevitt, C., Redfern, J., La-Placa, V., & Wolfe, C. (2003). Defining and using quality of life: a survey of health care professionals. Clinical Rehabilitation, 17(8), 865-870. doi: 10.1191/0269215503cr690oa Meeberg, G. A. (1993). Quality of life: a concept analysis. Journal of Advanced Nursing 18(1), 32–38. doi: 10.1046/j.1365-2648.1993.18010032.x Mehramiri, A., Parand, S., Haghpanah, S., & Karimi, M. (2012). Attitudes of haemophilic patients towards their health and socio-economic problems in Iran. Haemophilia, 18(1), 122-128. doi: 10.1111/j.1365-2516.2011.02586. Mercan, A., Sarper, N., Inanir, M., Mercan, H., Zengin, E., & Caki, S. (2010). Hemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-A-Qol Questionnaires) of children and adults: Result of a Single Center from Turkey. Pediatric Hematology and Oncology, 27(6), 449-461. doi: 10.3109/08880018.2010.489933. Miller, R., Sabin, C., Goldman, E., Clemente, C., Sadowski, H., Taylor, B., & Lee, C. (2000). Coping styles in families with haemophilia. Psychology, Health & Medicine, 5(1), 3-12. doi: 10.1080/135485000105963 Miller, D. G.., & Stamatoyannopoulos, G.. (2001). Gene Therapy for Hemophilia. The New England Journal of Medicine, 344(23), 1782-1784. Montgomery, R. R., & Shi, Q. (2010). Alternative Strategies for Gene Therapy of Hemophilia. American Society of Hematology, 2010(1), 197-202. doi: 10.1182/asheducation-2010.1.197. Nazzaro, A. M., Owens, S., Hoots, K., & Larson, K. L. (2006). Knowledge, Attitudes, and Behavios of youths in the US Hemophilia Population: Results of a National Survey. American Journal of Public Health, 96(9), 1618-1622. doi: 10.2105/AJPH.2005.075234) Negrier, C., Seuser, A., Forsyth, A., Lobet, S., Llinas, A., Rosas, M., & Heijnen, L. (2013). The benefits of exercise for patients with haemophilia and recommendations for safe and effective physical activity. Haemophilia, 19(4), 487-498. doi: 10.1111/hae.12118 Neufeld, E. J., Recht, M., Sabio, H., Saxena, K., Solem, C. T., Pickard, A. S., (…), & Cooper, D. L. (2012). Effect of Acute Bleeding on Daily Quality of Life Assessments in Patients with Congenital Hemophilia with Inhibitors and Their Families: Observations from the Dosing Observational Study in Hemophilia. Value in Health, 15(6), 916-925. doi: 10.1016/j.jval.2012.05.005. Nieves, R. (2004). Registro de personas con hemofilia. Ciencia y sociedad. 29(2), 287-301. Recuperado de http://www.redalyc.org/articulo.oa?id=87029205 Noone, D., O´Mahoney, B., & Prihodova, L. (2011). A survey of the outcome of prophylaxis, on-demand or combined treatment in 20–35 year old men with severe haemophilia in four European countries. Haemophilia, 17(5), e831-e848. doi: 10.1111/j.1365-2516.2011.02582.x Nutbeam, D. (1998). Health Promotion Glossary. Health Promotion I nternational,13(4), 349-364. Recuperado de: http://www.bvsde.paho.org/bvsacd/cd26/promocion/v13n4/349.pdf Park, J. (2000). “The Worst Hassle Is You Can’t Play Rugby”: Haemophilia and Masculinity in New Zealand.Current Anthropology, 41(3), 444-453. doi: 10.1086/300151 Philipp, C. (2010). The Aging Patient with Hemophilia: Complications, Comorbidities, and Management Issues. American Society of Hematology, 2010(1), 191-196. doi: 10.1182/asheducation-2010.1.191. Plug, I., Peters, M., & Mauser-Bunschoten, E. P. (2008). Social participation of patients with hemophilia in the Netherlands. Blood, 111(4), 1811–1815. 10.1182/blood-2007-07-102202 Ponder, K. P. (2011). Hemophilia Gene Therapy: A Holy Grail Found. Molecular Therapy, 19(3), 427-428. doi: 10.1038/mt.2011.13 Poon J. L., Lou M., Doctor J., Zhou Z. Y., Gwadry-Sridhar F., Baker J., (…), & Johnson, K.. (2011). The Hemophilia Utilization Group Study (Hugs-Vb): Health-Related Quality Of Life In Hemophilia B. Value in Health, 14(3), A210. doi: 10.1016/j.jval.2011.02.1157 Remor, E., Young, N. L., Von Mackensen, S., & Lopatinas, E. G. (2004). Disease-specific quality-of-life measurement tools for haemophilia patients. Haemophilia, 10(4), p. 30-34. doi: 10.1111/j.1365-2516.2004.01004.x Remor, E. (2005). Desarrollo de una medida específica para la Evaluación de la Calidad de Vida en Pacientes Adultos Viviendo con Hemofilia en América-Latina: el Hemolatin-QoL. Revista Interamericana de Psicología, 39(2), 211-220. Disponible en: http://www.psicorip.org/Resumos/PerP/RIP/RIP036a0/RIP03923.pdf Remor, E., Arranz, P., Quintana, M., Villar, A., Jiménez-Yuste, V., Diaz, L., (…), & Hernández-Navarro, F. (2005). Psychometric field study of the new haemophilia quality of life questionnaire for adults: The Hemofilia-QoL. Haemophilia, 11(6), 603-610. doi: 10.1111/j.1365-2516.2004.01004.x Remor, E. (2011). Predictors of treatment difficulties and satisfaction with haemophilia therapy in adult patients. Haemophilia, 17(5), e901-e905. doi: 10.1111/j.1365-2516.2011.02578.x Riva, S., Bullinger, M., Amann, E., & von Mackensen, S. (2010). Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY). Health and Quality of Life Outcomes, 8(139), 1-14. doi: 10.1186/1477-7525-8-139. Rodríguez, L. (2011). Salud y autocuidado en madres de niños con hemofilia: estudio de casos. Revista Costarricense de Psicología, 30(45-46), 1-16. Recuperado de http://www.revistacostarricensedepsicologia.com/articulos/RCP-45/1-RCP-Vol.30-No45-46.pdf Santagostino E, Mancuso M. E., Rocino A., Mancuso, G., Mazzuconi, M. G., Tagliaferri, A., (…), & Mannucci, P. M. (2005). Environmental risk factors for inhibitor development in children with haemophilia A: a case-control study. British Journal of Haematology, 130(3), 422-427. doi: 10.1111/j.1365-2141.2005.05605.x Santavirta, N., Bjorvell, H., Solovieva, S., Alaranta, H., Hurskainen, K., & Konttinen, Y. T. (2001). Coping Strategies, Pain, and Disability in Patients With Hemophilia and Related Disorders. Arthritis Care & Research, 45(1), 48-55. doi: 10.1002/1529-0131(200102)45:1<48::AID-ANR83>3.0.CO;2-1 Schalock, R. L. (2004). The concept of quality of life: what we know do not know. Journal of Intellectual Disability Research, 48(3), 203-216. doi: 10.1111/j.1365-2788.2003.00558.x Schmaier, A. H. (2011). Laboratory evaluation of hemostatic and thrombotic disorders. En: Hoffman R, Benz EJ Jr, Shattil SJ, et al, (Eds.), Hoffman Hematology: Basic Principles and Practice. (5a ed). Estados Unidos: Churchill Livingstone Elsevier. Siboni, S., Mannucci, P., Gringeri, A., Franchini, M., Tagliaferri, A., Ferreti,M., (…), & von Mackensen, S. (2009). Health status and quality of life of elderly persons with severe hemophilia born before the advent of modern replacement therapy. Journal of Thrombosis and Haemostasis, 7(5), 780-786. doi: 10.1111/j.1538-7836.2009.03318.x. Solovieva, S., Santavirta, N., Santavirta, S., & Konttinen, Y.T. (2004). Assessing quality of life in individuals with Hereditary Blood Coagulation Disorders. Quality of Life, 13(5), 987-1000. Recuperado de http://www.jstor.org/discover/10.2307/4038907?uid=3737808&uid=2129&uid=2&uid=70&uid=4&sid=21102944237043 Spilsbury, M. (2004). Models for psychosocial services in the developed and developing world. Haemophilia, 10(4), 25-29. doi: 10.1111/j.1365-2516.2004.01002.x Spira, J., Plyushch, O., Andreeva, T., Zorenko, V., Zozulya, N., Velichkoi, I., (…), & Baru, M. (2012). Safety and efficacy of a long-acting liposomal formulation of plasma-derived factor VIII in haemophilia A patients. British Journal of Haematology, 158(1), 138-152. doi: 10.1111/j.1365-2141.2012.09115.x Srivastava, A., Brewer, K, Mauser-Bunschoten, E. P., Key, N. S., Kitchen, S., Llinas, A., (…), & Street A. (2012). Guidelines for the management of hamophilia (2a ed.).doi: 10.1111/j.1365-2516.2012.02909.x Taylor, G. (2004). Challenges for Social Work in Hemophilia Care. Health & Social Work, 29(2), 149-152. doi: 10.1093/hsw/29.2.149 Taylor, R. M., Gibson, F., & Franck, L. S. (2008). A concept analysis of health-related quality of life in young people with cronic illness. Journal of Clinical Nursing. 17(14), 1823-1833. doi: 10.1111/j.1365-2702.2008.02379.x. Thomas, D. ,& Gaslin, T. C. (2001). Camping-up self-esteem in children with hemophilia. Issues in Comprehensive Pediatric Nursing, 24(4), 253-263. Disponible en: http://dx.doi.org/10.1080/014608601753260344 Valentino, L. (2009). The benefits of prophylactic treatment with APCC in patients with haemophilia and high-titre inhibitors: a retrospective case series. Haemophilia, 15(3), 733-742. doi: 10.1111/j.1365-2516.2009.01980.x. Valentino, L., Pipe, S., Tarantino, M., Ye, X., Xiong, Y., & Luo M. (2012). Healthcare resource utilization among haemophilia A patients in the United States. Haemophilia, 18(3), 332-338. doi: 10.1111/j.1365-2516.2011.02677.x. Ventegodt, S., Merrick, J., & Andersen, N. J. (2003). Measurement of Quality of Life VI. Quality-Adjusted Life Years (QALY) is an Unfortunate Use of the Quality-of-Life Concept. The Scientific World Journal. 3(1), 1015-1019. Recuperado de http://www.ncbi.nlm.nih.gov/pubmed/14570991 Ventegodt, S., Merrick, J., & Andersen, N. J. (2003). Quality of Life Theory I. The IQOL Theory: An Integrative Theory of the Global Quality of Life Concept. The Scientific World Journal. 3(1), 1030-1040. Recuperado de http://www.ncbi.nlm.nih.gov/pubmed/14570993 Von Mackensen, S., Gringeri, A., Siboni, S. M., & Mannucci, P. M. (2012). Health-related quality of life and psychological well-being in elderly patients with haemophilia. Haemophilia, 18(3), 345-352. doi: 10.1111/j.1365-2516.2011.02643.x. Walsh, M., Macgregor, D., Stuckless, S., Barrett, B., Kawaja, M., & Scullys, M. (2008). Health-related quality of life in a cohort of adult patients with mild hemophilia A. Journal of Thrombosis and Haemostasis, 6(5), 755-761. doi: 10.1111/j.1538-7836.2008.02929.x. Witkop, M., Lambing, A., Divine, G., Kachalsky, E., Rhuslow D., & Dinnen J. (2012). A national study of pain in the bleeding disorders community: a description of haemophilia pain. Haemophilia, 18(3), e115-e119. doi: 10.1111/j.1365-2516.2011.02709.x. Witkop, M., Lambing, A., Kachalsky, E., Divine, G., Rushlow, D., & Dinnen, J. (2011). Assessment of acute and persistent pain management in patients with haemophilia. Haemophilia, 17(4), 612-619. doi: 10.1111/j.1365-2516.2010.02479.x. World Federation of Haemophilia. (2013). World Federation of Hemophilia: Cornerstone of global development. Recuperado de: http://www.wfh.org/en/about-us. Zhou, Z. Y., Wu, J., Baker, J., Curtis, R., Forsberg, A., Huszti, H., (…), & Johnson K. (2011). Haemophilia Utilization Group Study – Part Va (HUGS Va): design, methods and baseline data. Haemophilia, 17(5), 729-736. doi: 10.1111/j.1365-2516.2011.02595.x. |
| Palavras-Chave | #HEMOFILIA #CALIDAD DE VIDA #Haemophilia #Quality of life |
| Tipo |
info:eu-repo/semantics/bachelorThesis info:eu-repo/semantics/submittedVersion |
