Factors Associated With Subjective Well-Being In Adults With Hemophilia
Abstract
Objectives: To evaluate the positively and negatively factors associated with the subjective well-being of adults with hemophilia from two associations of patients.
Methods: This study is a cross-sectional survey, carried out with convenience sampling in two patient associations. Data collection took place in November and December of 2015. The evaluation protocol consisted of the application of two instruments: Hemophilia Well-Being Index and a collection form of sociodemographic and clinical data.
Results: Fifty-three adults with hemophilia, and male, participated in the study. Their age ranged from 21 to 54 years old. It was observed a higher prevalence of participants with single marital status and third education level. The age and marital status of the participants did not influence their well-being.
Conclusion: The high level of education was positively associated with the well-being of the participants, related to the item “economic situation.”
Keywords: Hemophilia A; Hemophilia B; Adult; Subjective Well-Being Scale.
References
1. Del Giglio A, Kaliks R. Princípios de hematologia clínica. Barueri, SP: Manole, 2007.
2. Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Perfil das coagulopatias hereditárias no Brasil: 2014. Brasília: Editora MS, 2015.
3. Srivastava A, Brewer AK, Mauser-Bunschoten EP, Key NS, Kitchen S, Llinas A et al. Guidelines for the management of hemophilia. Haemophilia. 2013; 19: 1-47.
4. Berntorp E, Shapiro AD. Modern haemophilia care. The Lancet. 2012; 379: 1447-56.
5. Zago MA, Falcão RP, Pasquini R. Hematologia: fundamentos e prática. 1ª ed. São Paulo: Atheneu, 2004.
6. Soucie JM, Cianfrini C, Janco RL, Kulkarni R, Hambleton J, Evatt B et al. Joint range-of-motion limitations among young males with hemophilia: prevalence and risk factors. Blood. 2004; 103 (7): 2467-73.
7. Mauser-Bunschoten EP, Fransen Van de Putte DE, Schutgens REG. Co-morbidity in the ageing haemophilia patient: the down side of increased life expectancy. Haemophilia. 2009; 15: 853-63.
8. Ribeiro CC, Silveira A, Silva I, Ribeiro C, Gestal R, Vasconcelos C. Health related quality of life of chronic patients with immune system diseases: a piloty study. Rev. Bras. Enferm. 2012; 65 (3): 454-9.
9. Gill T, Feinstein AR. A critical appraisal of the quality-of-life measurements. Journal of the American Medical Association. 1994; 272: 619-26.
10. Carruyo-Vizcaíno C, Vizcaíno G, Carrizo E, Arteaga-Vizcaíno M, Sarmiento S, Vizcaíno-Carruyo J. Actitud de los individuos adultos con hemofilia hacia su enfermedad. Invest. clín. 2004; 45 (3): 257-67.
11. Remor E. Development and psychometric testing of the Hemophilia Well-being Index. International Journal of Behavioral Medicine. 2013; 20: 609-617.
12. Remor E. Quality of life in hemophilia. En: E.C. Rodríguez-Merchán & L. Valentino. Current and future issues in hemophilia care. Oxford, UK: Wiley-Blackwell, 2011. DOI: 10.1002/9781119979401.ch11
13. Remor E. Psychometric field testing of the Hemolatin-QoL questionnaire. Heamophilia. 2016. DOI:10.1111/hae.13055 (in press).
14. Garbin LM, Carvalho EC, Canini SRMS, Dantas RAS. Avaliação da qualidade de vida relacionada à saúde em pacientes portadores de hemofilia. Cienc. Cuid. Saude. 2007; 6 (2): 197-205.
15. Almeida ALSC, Almeida JOSC, Oliveira JRC, Ferreira LB. Qualidade de vida em pacientes portadores de hemofilia. Universitas: Ciências da Saúde. 2011; 9 (1): 61-76.
16. Nunes AA, Rodrigues BSC, Soares EM, Soares S, Miranzi SSC. Qualidade de vida de pacientes hemofílicos acompanhados em ambulatório de hematologia. Rev. Bras. Hematol. Hemoter. 2009; 31 (6): 437-43.
17. Caio MV, Silva RBP, Magna LA, Ramalho AS. Genética comunitária e hemofilia em uma população brasileira. Cad. Saúde Pública. 2001; 17: 535-605.
18. Hartl HK, Reitter S, Eidher U, Ramschak H, Ay C, Pabinger I. The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs. Haemophilia. 2008; 14: 703-8.
19. Shapiro A, Keyes CLM. Marital status and social well being: are the married always better off? Soc. Indic. Res. 2008; 88: 329-46.
20. Ferreira AA, Leite ICG, Bustamente-Teixeira MT, Corrêa CSL, Cruz DT, Rodrigues DOW, Ferreira MCB. Health-related quality of life in hemofhilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center. Rev. Bras. Hematol. Hemoter. 2013; 35 (5): 314-8.
21. Keyes CLM, Shmotkin D, Ryff CD. Optimizing well being: the empirical encounter of two traditions. Journal of Personality and Social Psychology. 2002; 82 (6): 1007-22.
22. Siqueira MMM, Gomide-Jr S. Vínculos do indivíduo com o trabalho e com a organização. In: Zanelli JC, Borges-Andrade JE, Bastos AVB. (Org.) Psicologia, organizações e trabalho no Brasil. Porto Alegre: Artmed, 2004.
23. Siqueira MMM, Padovam VAR. Bases teóricas do bem-estar subjetivo, bem-estar psicológico e bem-estar no trabalho. Psicologia: Teoria e Pesquisa. 2008; 24 (2): 201-9.
24. Diener E, Suh E, Lucas RE, Smith HL. Subjective well being: three decades of progress. Psychological Bulletin. 1999; 125 (2): 276-302.
25. Botelho ASC, Pereira MG. Qualidade de vida, otimismo, enfrentamento, morbidade psicológica e estresse familiar em pacientes com câncer colorretal em quimioterapia. Estudos em Psicologia. 2015; 20 (10): 50-60.
26. Triemstra AHM, Van Der Ploeg HM, Smit C, Briet E, Ader JH, Rosendaal FR. Well-being of haemophilia patients: a model for direct and indirect effects of medical parameters on the physical and psychosocial functioning. Soc. Sci. Med. 1998; 47 (5): 581-93.
27. Wisniewski D, Kluthcovsky ACGC. O perfil dos pacientes portadores de coagulopatias de uma região do sul do Brasil. Cogitare Enferm. 2008; 13 (2): 212-9.
28. Lorenzi TF. Manual de hematologia: propedêutica e clínica. 2ª ed. Rio de Janeiro: Medsi, 1999.
29. Fischer K, Valentino L, Ljung R, Blanchette V. Prophylaxis for severe haemophilia: clinical challenges in the absence as well as in the presence of inhibitors. Haemophilia. 2008; 14 (suppl. 3): 196-201.
30. Carmo RA, Oliveira GC, Guimarães MDC, Oliveira MS, Lima AA, Buzek SC et al. Hepatitis C virus infection among Brazilian hemophiliacs: a virological, clinical and epidemiological study. Brazilian Journal of Medical and Biological Research. 2002; 35: 589-598.
31. Binnema M, Schrijvers LH, Bos R, Schuurmans MJ, Fischer K. Coping in adult patients with severe haemophilia. Haemophilia. 2014; 20: 513-18, 2014.
32. Giacomoni CH. Bem-estar subjetivo: em busca da qualidade de vida. Temas em Psicologia da SBP. 2004; 12 (1): 43-50.
2. Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Perfil das coagulopatias hereditárias no Brasil: 2014. Brasília: Editora MS, 2015.
3. Srivastava A, Brewer AK, Mauser-Bunschoten EP, Key NS, Kitchen S, Llinas A et al. Guidelines for the management of hemophilia. Haemophilia. 2013; 19: 1-47.
4. Berntorp E, Shapiro AD. Modern haemophilia care. The Lancet. 2012; 379: 1447-56.
5. Zago MA, Falcão RP, Pasquini R. Hematologia: fundamentos e prática. 1ª ed. São Paulo: Atheneu, 2004.
6. Soucie JM, Cianfrini C, Janco RL, Kulkarni R, Hambleton J, Evatt B et al. Joint range-of-motion limitations among young males with hemophilia: prevalence and risk factors. Blood. 2004; 103 (7): 2467-73.
7. Mauser-Bunschoten EP, Fransen Van de Putte DE, Schutgens REG. Co-morbidity in the ageing haemophilia patient: the down side of increased life expectancy. Haemophilia. 2009; 15: 853-63.
8. Ribeiro CC, Silveira A, Silva I, Ribeiro C, Gestal R, Vasconcelos C. Health related quality of life of chronic patients with immune system diseases: a piloty study. Rev. Bras. Enferm. 2012; 65 (3): 454-9.
9. Gill T, Feinstein AR. A critical appraisal of the quality-of-life measurements. Journal of the American Medical Association. 1994; 272: 619-26.
10. Carruyo-Vizcaíno C, Vizcaíno G, Carrizo E, Arteaga-Vizcaíno M, Sarmiento S, Vizcaíno-Carruyo J. Actitud de los individuos adultos con hemofilia hacia su enfermedad. Invest. clín. 2004; 45 (3): 257-67.
11. Remor E. Development and psychometric testing of the Hemophilia Well-being Index. International Journal of Behavioral Medicine. 2013; 20: 609-617.
12. Remor E. Quality of life in hemophilia. En: E.C. Rodríguez-Merchán & L. Valentino. Current and future issues in hemophilia care. Oxford, UK: Wiley-Blackwell, 2011. DOI: 10.1002/9781119979401.ch11
13. Remor E. Psychometric field testing of the Hemolatin-QoL questionnaire. Heamophilia. 2016. DOI:10.1111/hae.13055 (in press).
14. Garbin LM, Carvalho EC, Canini SRMS, Dantas RAS. Avaliação da qualidade de vida relacionada à saúde em pacientes portadores de hemofilia. Cienc. Cuid. Saude. 2007; 6 (2): 197-205.
15. Almeida ALSC, Almeida JOSC, Oliveira JRC, Ferreira LB. Qualidade de vida em pacientes portadores de hemofilia. Universitas: Ciências da Saúde. 2011; 9 (1): 61-76.
16. Nunes AA, Rodrigues BSC, Soares EM, Soares S, Miranzi SSC. Qualidade de vida de pacientes hemofílicos acompanhados em ambulatório de hematologia. Rev. Bras. Hematol. Hemoter. 2009; 31 (6): 437-43.
17. Caio MV, Silva RBP, Magna LA, Ramalho AS. Genética comunitária e hemofilia em uma população brasileira. Cad. Saúde Pública. 2001; 17: 535-605.
18. Hartl HK, Reitter S, Eidher U, Ramschak H, Ay C, Pabinger I. The impact of severe haemophilia on the social status and quality of life among Austrian haemophiliacs. Haemophilia. 2008; 14: 703-8.
19. Shapiro A, Keyes CLM. Marital status and social well being: are the married always better off? Soc. Indic. Res. 2008; 88: 329-46.
20. Ferreira AA, Leite ICG, Bustamente-Teixeira MT, Corrêa CSL, Cruz DT, Rodrigues DOW, Ferreira MCB. Health-related quality of life in hemofhilia: results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol) at a Brazilian blood center. Rev. Bras. Hematol. Hemoter. 2013; 35 (5): 314-8.
21. Keyes CLM, Shmotkin D, Ryff CD. Optimizing well being: the empirical encounter of two traditions. Journal of Personality and Social Psychology. 2002; 82 (6): 1007-22.
22. Siqueira MMM, Gomide-Jr S. Vínculos do indivíduo com o trabalho e com a organização. In: Zanelli JC, Borges-Andrade JE, Bastos AVB. (Org.) Psicologia, organizações e trabalho no Brasil. Porto Alegre: Artmed, 2004.
23. Siqueira MMM, Padovam VAR. Bases teóricas do bem-estar subjetivo, bem-estar psicológico e bem-estar no trabalho. Psicologia: Teoria e Pesquisa. 2008; 24 (2): 201-9.
24. Diener E, Suh E, Lucas RE, Smith HL. Subjective well being: three decades of progress. Psychological Bulletin. 1999; 125 (2): 276-302.
25. Botelho ASC, Pereira MG. Qualidade de vida, otimismo, enfrentamento, morbidade psicológica e estresse familiar em pacientes com câncer colorretal em quimioterapia. Estudos em Psicologia. 2015; 20 (10): 50-60.
26. Triemstra AHM, Van Der Ploeg HM, Smit C, Briet E, Ader JH, Rosendaal FR. Well-being of haemophilia patients: a model for direct and indirect effects of medical parameters on the physical and psychosocial functioning. Soc. Sci. Med. 1998; 47 (5): 581-93.
27. Wisniewski D, Kluthcovsky ACGC. O perfil dos pacientes portadores de coagulopatias de uma região do sul do Brasil. Cogitare Enferm. 2008; 13 (2): 212-9.
28. Lorenzi TF. Manual de hematologia: propedêutica e clínica. 2ª ed. Rio de Janeiro: Medsi, 1999.
29. Fischer K, Valentino L, Ljung R, Blanchette V. Prophylaxis for severe haemophilia: clinical challenges in the absence as well as in the presence of inhibitors. Haemophilia. 2008; 14 (suppl. 3): 196-201.
30. Carmo RA, Oliveira GC, Guimarães MDC, Oliveira MS, Lima AA, Buzek SC et al. Hepatitis C virus infection among Brazilian hemophiliacs: a virological, clinical and epidemiological study. Brazilian Journal of Medical and Biological Research. 2002; 35: 589-598.
31. Binnema M, Schrijvers LH, Bos R, Schuurmans MJ, Fischer K. Coping in adult patients with severe haemophilia. Haemophilia. 2014; 20: 513-18, 2014.
32. Giacomoni CH. Bem-estar subjetivo: em busca da qualidade de vida. Temas em Psicologia da SBP. 2004; 12 (1): 43-50.
Published
2017-05-01
How to Cite
HOLSBACH, Denise Rodrigues et al.
Factors Associated With Subjective Well-Being In Adults With Hemophilia.
International Archives of Medicine, [S.l.], v. 10, may 2017.
ISSN 1755-7682.
Available at: <http://imedicalsociety.org/ojs/index.php/iam/article/view/2465>. Date accessed: 23 apr. 2019.
doi: https://doi.org/10.3823/2430.
Issue
Section
Hematology
Copyright policies & self-archiving
We are a RoMEO green journal.
Author's Pre-print: 
author can archive pre-print (ie pre-refereeing)
Author's Post-print: author can archive post-print (ie final draft post-refereeing)
Publisher's Version/PDF: author can archive publisher's version/PDF
Copyright ownership
- Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
- Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
- Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access and Benefits of Publishing Open Access).
This journal provides immediate open access to its content on the principle that making research freely available to the public supports a greater global exchange of knowledge.
Articles are published Under License of Creative Commons Attribution 4.0 License ©
