medigraphic.com
ISSN 1561-2996 (Electronic)
ISSN 0864-0289 (Print)

2022, Number 2

<< Back Next >>

Rev Cubana Hematol Inmunol Hemoter 2022; 38 (2)

Self-esteem and coping skills: predictors of quality of life in patients with hemophilia

Aguiar-Palacios LH, González-Arratia López-Fuentes NI, Ruíz MAO, Domínguez EAC, Martínez-Alvarado JR, Padilla-Bautista JA, Torres MMA

Language: Spanish
References: 25
Page: 1-7
PDF size: 635.99 Kb.


ABSTRACT

Introduction: Hemophilia is a bleeding disorder that causes severe pain and damage to the joints. People with this health condition often present psychosocial problems such as low self-esteem and difficulty facing their disease, which can negatively impact their health-related quality of life (HRQoL).
Objective: To analyze the predictive effect of self-esteem and coping strategies towards HRQL in people with hemophilia.
Methods: This was a quantitative, non-experimental, correlational study, with a convenience sample, carried out in 60 participants with hemophilia, ages between 15 and 67 years (mean = 27.43, standard deviation = 11.32). The Specific Quality of Life for Hemophilia, Self-esteem and Coping with Chronic Pain questionnaires were used. Descriptive analyzes. Pearson correlation and multiple linear regression analysis were performed with the stepwise method.
Results: It was found that the level of HRQL was mostly moderate, however, low levels were observed in the Sports and free time and Future dimensions. The Success dimension of the self-esteem scale positively correlated with the Sports and free time dimensions (r(60) = 0.59). Physical health (r(60) = 0.54) and Self-perception (r(60) = 0.48) of the quality of life scale, in addition to having shown a high level of prediction of quality of life (R2 = 0.35, p = 0.00).
Conclusions: It was found that self-esteem turns out to be a predictor variable of HRQL in patients with hemophilia. It is necessary to strengthen self-esteem and the way of coping with chronic pain in people with this condition in favor of their quality of life and well-being.


REFERENCES

  1. Soucie JM, Miller CH, Dupervil B, Le B, Buckner TW. Occurrence rates of haemophilia among males in the United States based on surveillance conducted in specialized haemophilia treatment centres, Haemophilia. 2020;26(3):487-93 DOI: https://doi.org/10.1111/hae.139981.

  2. Robinson WD, Jones AC, McPhee DP. Living with a rare chronic illness: A phenomenological. systemic examination of hemophilia complicated by an inhibitor. Am J Fam Ther. 2020;48(3):1-21 DOI: https://doi.org/10.1080/01926187.2019.17088312.

  3. Page D. Comprehensive care for hemophilia and other inherited bleeding disorders. Transfus Apher Sci. 2019;58(5):565-8. DOI: https://doi.org/10.1016/j.transci.2019.08.0053.

  4. Stoffman J, Andersson NG, Branchford B, Batt K, D'Oiron R, Escuriola Ettingshausen C. et al. Common themes and challenges in hemophilia care: a multinational perspective. Hematology (Amsterdam, Netherlands). 2019; 24(1):39-48. DOI: https://doi.org/10.1080/10245332.2018.15052254.

  5. Federación de Hemofilia de la República Mexicana, A.C. Registro Mexicano de Coagulopatías. 2021, [acceso: 11/02/2021]; Disponible en: https://rmc-mx.org/5.

  6. Chhabra A, Spurden D, Fogarty PF, Tortella BJ, Rubinstein E, Harris S. et al. Real-world outcomes associated with standard half-life and extended half-life factor replacement products for treatment of haemophilia A and B, Blood Coagul Fibrinolysis. 2020;31(3):186-92. DOI: https://doi.org/10.1097/MBC.00000000000008856.

  7. Morfini M, Marchesini E. The availability of new drugs for hemophilia treatment. Expert Rev Clin Pharmacol. 2020 Jul;13(7):721-738. DOI: https://doi.org/10.1080/17512433.2020.17761097.

  8. van Vulpen LFD, Holstein K, Martinoli C. Joint disease in haemophilia: Pathophysiology, pain and imaging, Haemophilia. 2018;24:44-9. DOI: https://doi.org/10.1111/hae.134498.

  9. Davari M, Gharibnaseri Z, Ravanbod R, Sadeghi A. Health status and quality of life in patients with severe hemophilia A: A cross-sectional survey. Hematol Rep. 2019 Jun 14;11(2):7894. DOI: https://doi.org/10.4081/hr.2019.78949.

  10. Cuesta-Barriuso R, Torres-Ortuño A, Nieto-Munuera J, López-Pina JA. Effectiveness of an Educational Physiotherapy and Therapeutic Exercise Program in Adult Patients With Hemophilia: A Randomized Controlled Trial. Arch Phys Med Rehabil. 2017 May;98(5):841-8. DOI: https://doi.org/10.1016/j.apmr.2016.10.01410.

  11. Limperg PF, Haverman L, Maurice-Stam H, Coppens M, Valk C, Kruip MJHA. et al. Health-related quality of life. developmental milestones, and self-esteem in young adults with bleeding disorders. Quality Life Res. 2018;27(1):159-71. DOI: https://doi.org/10.1007/s11136-017-1696-011.

  12. Kempton CL, Wang M, Recht M, Neff A, Shapiro AD, Soni A. et al. Reliability of patient-reported outcome instruments in US adults with hemophilia: The Pain. Functional Impairment and Quality of life (P-FiQ) study, Patient Prefer Adherence. 2017 Sep 19;11:1603-12. DOI: https://doi.org/10.2147/PPA.S14138912.

  13. Batt K, Boggio L, Neff A, Buckner TW, Wang M, Quon D. et al. Patient-reported outcomes and joint status across subgroups of US adults with hemophilia with varying characteristics: Results from the Pain. Functional Impairment, and Quality of Life (P-FiQ) study. Eur J Haematol. 2018;100:14-24. DOI: https://doi.org/10.2147/PPA.S14139013.

  14. Wang M, Batt K, Kessler C, Neff A, Iyer NN, Cooper DL. et al. Internal consistency and item-total correlation of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adult people with hemophilia: results from the Pain. Functional Impairment, and Quality of life (P-FiQ) study, Patient Prefer Adherence. 2017;11:1831-9, DOI: https://doi.org/10.2147/PPA.S14139114.

  15. Gogtay NJ, Thatte UM. Principles of correlation analysis. J Assoc Physicians India. 2017 [acceso 25/01/2021];65(3):78-81. Disponible en: https://pubmed.ncbi.nlm.nih.gov/28462548/15.

  16. Mackensen S, Campos IG, Acquadro C, Strandberg LM. Cross-cultural adaptation and linguistic validation of age-group-specific haemophilia patient-reported outcome (PRO) instruments for patients and parents. Haemophilia. 2013;19(2):e73-83. DOI: https://doi.org/10.1111/hae.1205416.

  17. González-Arratia LFNI. Autoestima, Medición y estrategias de intervención para una reconstrucción del ser. México: Universidad Autónoma del Estado de México; 2011

  18. Domínguez LA, van Barneveld JO, Fuentes NIGAL, Flores GM. Validación de un cuestionario de estrategias de afrontamiento ante el dolor crónico para una muestra mexicana. Temas selectos de biomedicina en Ciencias de la Salud. México: Universidad Autónoma del Estado de México. Repositorio Institucional, 2017, [acceso 23/02/2021]; Disponible en: https://ri.uaemex.mx/handle/20.500.11799/6747818.

  19. . FaulF. G*Power Statistical Power Analyses for Mac and Windows. Germany: Universität Kiel; 2019. [acceso 12/01/2021] Disponible en: Disponible en: https://www.psychologie.hhu.de/arbeitsgruppen/allgemeine-psychologie-und-arbeitspsychologie/gpower.html 19.

  20. Cárdenas-Castro M, Arancibia-Martini H. Potencia estadística y cálculo del tamaño del efecto en G*Power: complementos a las pruebas de significación estadística y su aplicación en psicología. Salud Soc. 2016;5(2):210-44. DOI: https://doi.org/10.22199/S07187475.2014.0002.0000620.

  21. van Os SB, Troop NA, Sullivan KR, Hart DP. Adherence to Prophylaxis in Adolescents and Young Adults with Severe Haemophilia: A Quantitative Study with Patients. PLoS ONE. 2017;12(1):1-18. DOI: https://doi.org/10.1371/journal.pone.016988021.

  22. Trindade GC, Viggiano LG de L, Brant ER, Lopes CA de O, Faria ML, Ribeiro PHN de S, Pinheiro M de B. et al. Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires. Hematology. Transfusion And Cell Therapy. 2019;41(4):335-41. DOI: https://doi.org/10.1016/j.htct.2019.03.01022.

  23. Salomon T, Chaves DG, Brener S, Martins PRJ, Mambrini JVM, Peixoto SV. Determining the health-related quality of life in individuals with haemophilia in developing economies: results from the Brazilian population. Haemophilia. 2017;23(1):42-9. DOI: https://doi.org/10.1111/hae.1313023.

  24. Reinicke K, Søgaard IS, Mentzler S. Masculinity Challenges for Men With Severe Hemophilia. Am J Men's health, 2019;13(4):1557988319872626. DOI: https://doi.org/10.1177/155798831987262624.

  25. Sheeran P, Maki A, Montanaro E, Avishai-Yitshak A, Bryan A, Klein WMP. et al. The impact of changing attitudes, norms, and self-efficacy on health-related intentions and behavior: A meta-analysis. Health Psychol. 2016;35(11):1178-88. DOI: https://doi.org/10.1037/hea000038725.




2020     |     www.medigraphic.com