Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study

References

• Ljung R, Gretenkort Andersson N. The current status of prophylactic replacement therapy in children and adults with haemophilia. Br J Haematol. 2015;169(6):777–786. doi:10.1111/bjh.13365
   PubMed Web of Science ®Google Scholar
• Flood E, Pocoski J, Michaels LA, Bell JA, Valluri S, Sasanè R. Illustrating the impact of mild/moderate and severe haemophilia on health-related quality of life: hypothesised conceptual models. Eur J Haematol. 2014;93(75):9–18. doi:10.1111/ejh.12328
   Web of Science ®Google Scholar
• Pulles AE, Mastbergen SC, Schutgens REG, Lafeber FPJG, van Vulpen LFD. Pathophysiology of hemophilic arthropathy and potential targets for therapy. Pharmacol Res. 2017;115:192–199. doi:10.1016/j.phrs.2016.11.032
   PubMed Web of Science ®Google Scholar
• Tagliaferri A, Feola G, Molinari AC, et al. Benefits of prophylaxis versus on-demand treatment in adolescents and adults with severe haemophilia A: the POTTER study. Thromb Haemost. 2015;114(07):35–45. doi:10.1160/TH14-05-0407
   PubMed Web of Science ®Google Scholar
• Hoots WK, Shapiro AD. Inhibitors in hemophilia: mechanisms, prevalence, diagnosis, and eradication. In: Post TW, editor. UpToDate. Waltham, MA: UpToDate Inc; 2020.
   Google Scholar
• Djerassi I, Bhanchet P, Hsies Y, Wolman IJ. Clinical use of cold precipitated antihemophilic globulin (factor VIII, CPAG). Transfusion. 1965;5:533–538. doi:10.1111/j.1537-2995.1965.tb01200.x
   Web of Science ®Google Scholar
• Lee CA, Kernoff PBA. Blood Product Therapy in Haemophilia: Historic Papers. London: Science Press; 1986.
   Google Scholar
• Colvin BT. Haemophilia in the UK. Past, present and future. Haemophilia. 1995;1(S2):4–5. doi:10.1111/j.1365-2516.1995.tb00113.x
   Web of Science ®Google Scholar
• Isarangkura P. Haemophilia care in the developing world: benchmarking for excellence. Haemophilia. 2002;8:205–210. doi:10.1046/j.1365-2516.2002.00600.x
   PubMed Web of Science ®Google Scholar
• Mannucci PM, Schutgens RE, Santagostino E, Mauser-Bunschoten EP. How I treat age-related morbidities in elderly persons with hemophilia. Blood. 2009;114:5256–5263. doi:10.1182/blood-2009-07-215665
   PubMed Web of Science ®Google Scholar
• Konkle BA. Clinical challenges within the aging hemophilia population. Thromb Res. 2011;127(1):S10–3. doi:10.1016/j.thromres.2010.10.004
   Web of Science ®Google Scholar
• O’Mahnony B. Global haemophilia care. Haemophilia. 2000;6(2):1–2.
   Google Scholar
• Rickard KA. The International Haemophilia Training Centres of the World Federation of Hemophilia: a 30-year review. Haemophilia. 2000;6:471–473. doi:10.1046/j.1365-2516.2000.00446.x
   Web of Science ®Google Scholar
• World Federation of Hemophilia. Report on the WFH Global Survey on Hemophilia 2001 for National Member Organization. 2001.
   Google Scholar
• Shumaker SA, Naughton MJ. The international assessment of health related quality of life: a theoretical perspective. In: Shumaker SA, Berzon RA, editors. The International Assessment of Health Related Quality of Life. Theory, Translation, Measurement and Analysis. New York: Rapid Communication; 1995:3–10.
   Google Scholar
• Leventhal H, Benyamini Y, Brownlee S. Illness representations: theoretical foundations. In: Petrie KJ, Weinman J, editors. Perceptions of Health and Illness: Current Research and Applications. Amsterdam: Harwood Academic Publishers; 1997:19–45.
   Google Scholar
• Leventhal H, Diefenbach MA, Leventhal EA. Illness cognition: using common sense to understand treatment adherence and affect cognition interactions. Cognit Ther Res. 1992;16:143–163. doi:10.1007/BF01173486
   Web of Science ®Google Scholar
• Llewellyn C, Minersb A, Leec A, Harrington C, Weinman J. The illness perceptions and treatment beliefs of individuals with severe haemophilia and their role in adherence to home treatment. Psychol Health. 2003;18:185–200. doi:10.1080/0887044031000098198
   Web of Science ®Google Scholar
• Lamiani G, Strada I, Mancuso ME, Coppola A, Vegni E, Moja EA. Factors influencing illness representations and perceived adherence in haemophilic patients: a pilot study. Haemophilia. 2015;21:598–604. doi:10.1111/hae.12654
   Web of Science ®Google Scholar
• Reynolds NR, Eller LS, Nicholas PK, et al. HIV illness representation as a predictor of self-care management and health outcomes: a multi-site, cross-cultural study. AIDS Behav. 2009;13:258–267. doi:10.1007/s10461-007-9297-5
   PubMed Web of Science ®Google Scholar
• Coppola A, Cerbone AM, Mancuso G, Mansueto MF, Mazzini C, Zanon E. Confronting the psychological burden of haemophilia. Haemophilia. 2011;17:21–27. doi:10.1111/j.1365-2516.2010.02280.x
   PubMed Web of Science ®Google Scholar
• Cassis FY, Querol F, Forsyth A, Iorio A. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia. 2012;18(3):e101–e114. doi:10.1111/j.1365-2516.2011.02683.x
   PubMed Web of Science ®Google Scholar
• Urzua A, Jarne N. Quality of life and coping styles in people with chronic diseases. Interam J Psychol. 2008;42:151–160.
   Google Scholar
• Sarafino EP. Health Psychology: Biopsychological Interactions. Wiley: New York; 2008.
   Google Scholar
• Bottos AM, Zanon E, Sartori MT, Girolami A. Psychological aspects and coping styles of parents with Haemophilic child undergoing a programme of counseling and psychological support. Haemophilia. 2007;13:305–310. doi:10.1111/j.1365-2516.2006.01428.x
   Web of Science ®Google Scholar
• Wiedebusch S, Pollmann H, Siegmund B, Muthny FA. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia. 2008;14:1014–1022. doi:10.1111/j.1365-2516.2008.01803.x
   PubMed Web of Science ®Google Scholar
• Canclini M, Saviolo-Negrin N, Zanon E, Bertoletti R, Girolami A, Pagnan A. Psychological aspects and coping in haemophilic patients: a case–control study. Haemophilia. 2003;9:619–624. doi:10.1046/j.1365-2516.2003.00807.x
   Web of Science ®Google Scholar
• Elander J, Morris J, Robinson G. Pain coping and acceptance as longitudinal predictors of health-related quality of life among people with haemophilia-related joint pain. Eur J Pain. 2013;17:929–938. doi:10.1002/j.1532-2149.2012.00258.x
   PubMed Web of Science ®Google Scholar
• Binnema M, Schrijvers LH, Bos R, Schuurmans MJ, Fischer K. Coping in adult patients with severe haemophilia. Haemophilia. 2014;20:513–518. doi:10.1111/hae.12366
   Web of Science ®Google Scholar
• Brodin E, Baghaei F, Sunnerhagen KS. Self-reported activity and functioning in daily life; the perspective of persons with haemophilia living in Sweden. Eur J Haematol. 2015;95(4):336–341. doi:10.1111/ejh.12503
   Web of Science ®Google Scholar
• Pacheco-Huergo V, Viladrich C, Pujol-Ribera E, et al. Perception in chronic illnesses: linguistic validation of the revised Illness Perception Questionnaire and the Brief Illness Perception Questionnaire for a Spanish population. Aten Primaria. 2012;44(5):280–287. doi:10.1016/j.aprim.2010.11.022
   PubMed Web of Science ®Google Scholar
• Remor E, Arranz P, Quintana M, et al. Psychometric field study of the new haemophilia quality of life questionnaire for adults: the ‘Hemofilia-QoL’. Haemophilia. 2005;11(6):603–610. doi:10.1111/j.1365-2516.2005.01144.x
   Web of Science ®Google Scholar
• Cano-García FJ, Rodríguez-Franco L, García-Martínez J. Spanish adaptation of the inventory of coping strategies. Actas Esp Psiquiatr. 2007;35(1):29–39.
   Web of Science ®Google Scholar
• Feldman BM, Funk SM, Bergstrom BM, et al. Validation of a new paediatric joint scoring system from the International Hemophilia Prophylaxis Study Group: validity of the hemophilia joint health score. Arthritis Care Res. 2011;63(2):223–230. doi:10.1002/acr.20353
   Web of Science ®Google Scholar
• Witkop M, Neff A, Buckner TW, et al. Self-reported prevalence, description and management of pain in adults with haemophilia: methods, demographics and results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study. Haemophilia. 2017;23(4):556–565. doi:10.1111/hae.13214
   PubMed Web of Science ®Google Scholar
• Solovieva S. Clinical severity of disease, functional disability and health-related quality of life. Three-year follow-up study of 150 Finnish patients with coagulation disorders. Haemophilia. 2001;7:53–63.
   Web of Science ®Google Scholar
• Fischer K, Van der Bom JG, Mauser-Bunschoten EP, Roosendaal G, Van den Berg HM. Effects of haemophilic arthropathy on health-related quality of life and socioeconomic parameters. Haemophilia. 2005;11:43–48. doi:10.1111/j.1365-2516.2005.01065.x
   Web of Science ®Google Scholar
• Schrijvers LH, Schuurmans MJ, Fischer K. Promoting self-management and adherence during prophylaxis: evidence-based recommendations for haemophilia professionals. Haemophilia. 2016;22(4):499–506. doi:10.1111/hae.12904
   PubMed Web of Science ®Google Scholar
• Torres-Ortuño A, Cid-Sabatel R, Garcia-Dasi M, Barrero J. Life experience of the adult and ageing patient with haemophilia. Practical aspects for psychological support. Vox Sang. 2017;112(4):301–309. doi:10.1111/vox.12501
   PubMed Web of Science ®Google Scholar
• Srivastava A, Santagostino E, Dougall A, et al. WFH guidelines for the management of hemophilia, 3rd edition. Haemophilia. 2020;26(S6):1–158. doi:10.1111/hae.14046
   PubMed Web of Science ®Google Scholar
• Katsarou O, Touloumi G, Antoniou A, Kouramba A, Hatzakis A, Karafoulidou A. Progression of HIV infection in the post-HAART era among a cohort of HIV+ Greek haemophilia patients. Haemophilia. 2005;11(4):360–365. doi:10.1111/j.1365-2516.2005.01109.x
   Web of Science ®Google Scholar
• Torres-Ortuño A, Cuesta-Barriuso R, Nieto-Munuera J. The influence of HIV, HCV and inhibitors on the quality of life and behavior of the disease in patients with haemophilia: an observational study. J AIDS Clin Res. 2016;7(1):534.
   Google Scholar
• Theorell T, Blomkvist V, Jonsson H, Schulman S, Berntorp E, Stigendal L. Social support and the development of immuno function in human immunodeficiency virus infection. Psychosom Med. 1995;57:32–36. doi:10.1097/00006842-199501000-00005
   PubMed Web of Science ®Google Scholar
• Osooli M, Steen Carlsson K, Baghaei F, et al. The association between health utility and joint status among people with severe haemophilia A: findings from the KAPPA register. Haemophilia. 2017;23:e180–e187. doi:10.1111/hae.13231
   Web of Science ®Google Scholar