Quality of life of hemophiliac - patients and satisfaction with their prophylactic treatment in Colombia - REVISTA AVFT.COM
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Quality of life of hemophiliac
patients and satisfaction with their
prophylactic treatment in Colombia
Calidad de vida de los pacientes hemofílicos y satisfacción con su tratamiento profiláctico en Colombia
Antistio Alviz-Amador1*, Arnulfo Tarón-Dunoyer2, Antonio Díaz-Caballero3
1
Pharmaceutical Chemist, University of Cartagena. MSc Pharmacology, University of Cartagena. Ph.D. in Biomedical Sciences, University of Cartagena.
Auxiliar Professor Faculty of Pharmaceutical Sciences, University of Cartagena, Health Campus. Leader of Pharmacology and therapeutics research group.
Cartagena, Colombia
2
Pharmaceutical chemist. Master in Science and Technology of Biotechnological Processes, Havana University. Titular Professor, University of Cartagena,
Colombia..
AVFT Archivos Venezolanos de Farmacología y Terapéutica
3
Dentist, University of Cartagena. Periodontics Specialist, Javeriana University, Bogotá. Master in Education, Universidad Del Norte, Barranquilla. Ph.D. in
Biomedical Sciences, University of Cartagena. Titular Professor, University of Cartagena. Leader of GITOUC research group.
Corresponding author: Antistio Alviz-Amador. Faculty of Pharmaceutical Sciences, University of Cartagena, Health Campus. Postal Code: 130015. E-mail:
Volumen 40, número 9, 2021 ISSN 2610-7988
aalviza@unicartagena.edu.co
Received/Recibido: 09/25/2021 Accepted/Aceptado: 10/15/2021 Published/Publicado: 12/12/2021 DOI: http://doi.org/10.5281/zenodo.5834683
Abstract Resumen
Background: Hemophilia is an X-linked congenital bleed- Antecedentes: la hemofilia es un trastorno hemorrágico congé-
ing disorder caused by a deficiency of coagulation factors. By nito ligado al cromosoma X causado por una deficiencia de fac-
which the therapy with recombinant and factors coagulation tores de coagulación. Por lo que la terapia con recombinantes y
protein is necessary all life. This causes both physical and psy- factores de proteína de coagulación es necesaria durante toda la
chosocial changes that affect the quality of life. The objective of vida. Esto provoca cambios tanto físicos como psicosociales que
this research was to determine the association between quality afectan la calidad de vida. El objetivo de esta investigación fue
of life, treatment satisfaction, and clinical severity of vulnerable determinar la asociación entre la calidad de vida, la satisfacción
hemophiliac patients of Cartagena-Colombia. Methods: An ob- con el tratamiento y la gravedad clínica de los pacientes hemofí-
servational study was conducted by reviewing medical records licos vulnerables de Cartagena-Colombia. Métodos: Se realizó un
of hemophiliacs. Quality of Life (QoL) Questionnaire Hemophilia estudio observacional mediante la revisión de historias clínicas
Mexico and treatment satisfaction (TS) questionnaires were de hemofílicos. Cuestionario de Calidad de Vida (QoL) Hemofilia
895
applied to patients with Hemophilia in Cartagena-Colombia. México y cuestionarios de satisfacción con el tratamiento (TS) se
Associations between QoL and clinical severity and bivariate aplicaron a pacientes con Hemofilia en Cartagena-Colombia. Se
correlations between QoL and TS were assessed. Results: 29 evaluaron las asociaciones entre la CdV y la gravedad clínica y
hemophiliac patients between 1 and 60 years old were evalu- las correlaciones bivariadas entre la CdV y el ST. Resultados: se
ated. 80% of patients were classified with moderate and severe evaluaron 29 pacientes hemofílicos entre 1 y 60 años. El 80% de
hemophilia. 76% of individuals presented high QoL and 24% los pacientes se clasificaron con hemofilia moderada y grave. El
an average QoL; low QoL dimensions were: Knowledge about 76% de los individuos presentó CV alta y el 24% una CV media;
the disease, risks, physical discomforts, emotional aspects, and Las dimensiones de baja CV fueron: Conocimiento sobre la en-
school or work absenteeism. TS was high, with results of 5.74 fermedad, riesgos, malestares físicos, aspectos emocionales y ab-
± 0.06 (0-6 scale). There were correlations between some vari- sentismo escolar o laboral. TS fue alto, con resultados de 5,74 ±
ables of TS with values of R2> 0.1, p 0.1, pIntroduction less than 1%) from Cartagena were included, they had to sign
previous informed consent.
Hemophilia is an X-linked congenital bleeding disor-
der caused by a deficiency of coagulation factor VIII (FVIII) Exclusion criteria: patients with a bleeding disorder other than
(Hemophilia A) or coagulation factor IX (FIX) (Hemophil- hemophilia, with psychotic disorders, and who did not agree to
ia B)1,2. The deficiency is the result of mutations of the take part in the study.
respective clotting factor genes, it is considered a rare disease
that has a frequency of approximately one case in 10.0003. Ac- Quality of life of patients with Hemophilia
cording to annual surveys from the World Federation of He- The authors applied a specific questionnaire QoLHMex for he-
mophilia (WFH), approximately 400,000 subjects are living with mophiliac patients. This instrument was developed by Dr. Osorio
hemophilia worldwide, as for Colombia, in agreement with the is made up of 63 reagents with different subscripts, for a total
high-cost account report, there are 1834 Hemophiliac patients. of 162 items, with two response options (Yes or No) and has 13
According to this baseline, a prevalence of 0.88 /10,000 affili- dimensions: Concentration, Self-esteem, Family Support, Activ-
ated males and 0.75 /10,000 male births was defined4. ity Level, Knowledge about the Disease, Risks, Physical Disor-
ders, Feelings about the Disease, Social Area, Emotional Area,
90% of severe HA or HB develop internal bleeding episodes Future, Truancy, and Joint Problems19.
into muscles or joints and usually begin at an early age3,5–12. The
clinical manifestation of hemophilia is hemorrhage, it normally Psychologist Maricela Osorio Guzmán Ph.D. provided the test,
affects joints and muscles in the lower and upper limbs, internal and a group of experts where Dr. Osorio Guzmán, author of
bleedings of digestive and urinary systems are also common, in questionnaire and psychology professionals validated it to Co-
like manner but less frequent, Central Nervous System (CNS) lombian patients with hemophilia15,20.
can be affected, this being the most severe bleeding, and the
Patient satisfaction with pharmacological treatment
one that generates greater morbidity and mortality3,8,12–14.
The ESTAR satisfaction questionnaire for HIV patients that was
Diagnosis and treatment of hemophilia is a complex process, adapted to Hemophilia was used to determine TS of patients
this condition goes hand in hand with both physical and psy- with prophylactic replacement therapy, experts and a consis-
chosocial disorders that affect the Quality of Life (QoL) of the tency analysis using Cronbach’s Alpha validated it21,22.
patients. According to some authors such as Sarmiento et al.
Statistical analysis
(2006), the consequences and complications of hemophilia
Statistical analysis included descriptive statistics for demograph-
result from inappropriate management with treatment with
ic, clinical, QoL, and TS data. Between QoL and TS data, Bivari-
clotting factors that lack quality, quantity, and biological safe-
ate Pearson correlations were performed, accepting as P value
ty (since they may cause inhibitors or antibodies and may notQuality of life Satisfaction with pharmacological treatment
76% of patients presented a high QoL and the remaining 24% Table 2 shows TS values. It can be seen that the dimension satis-
an average QoL. These outcomes are similar to those presented faction with antihemophilic treatment was 5.6 ± 0.21 on a scale
by Osorio et al. in 2013, where 67% of patients had an average of 0 to 6, reflecting great satisfaction, with 90% of patients in
or high QoL15. six and only 0.03% in zero. The highest evaluated dimension
was satisfaction with continuing treatment, which achieved an
Table 1 summarizes the main data, showing that patients pre- average of 5.90 ± 0.07, reflecting satisfaction with following up
sented lower QoL perception on the following dimensions: on medication, in this case as in the aforementioned, 90% of
knowledge about disease (5), physical discomforts (7), emo- patients were in six and 0.03% in zero.
tional aspects (10), and school or work absenteeism (12).
The lowest dimension was satisfaction with how antihemophilic
Table 1. Quality of Life: QoLHMeX Questionnaire treatment adapts to your lifestyle, which obtained an average
value of 5.50±0.16 thus getting a ceiling effect of 90% patients
QoL dimensions QoL level frequency percentage
in six and only 0.03% in zero.
High 24 83
1) Concentration Average 5 17 Table 2. Condensed data on satisfaction with antihemophilic treat-
Archivos Venezolanos de Farmacología y Terapéutica
Low 0 0 ment, adapted from the ESTAR study
High 23 79 Floor effect Ceiling effect
Dimensions rank N Mean ± ESM
(% minV) (% maxV)
(2) Self-steem Average 6 21
Volumen 40, número 9, 2021 ISSN 2610-7988
Low 0 0 A. Satisfaction with
antihemophilic 0a6 29 5.60 ± 0.21 0.03 90
High 14 48
treatment
(3) Family support Average 15 52
Low 0 0 B. satisfaction with
antihemophilic treatment 0a6 29 5.80 ± 0.14 0.03 90
High 25 86
efficacy
(4) Activity level Average 4 14
Low 0 0 C. Satisfaction with side
0a6 29 5.90 ± 0.10 0.03 90
effects of antihemophilics
High 23 79
(5) Knowledge about the disease Average 5 17 D. Satisfaction with
0a6 29 5.80 ± 0.10 0.03 90
Low 1 3 treatment requirements
High 13 45 E. Satisfaction with
0a6 29 5.70 ± 0.18 0.03 90
treatment comfort
(6) Risks Average 15 52
Low 1 3 F. Satisfaction with disease
0a6 29 5.70 ± 0.11 0.03 90
High 6 21 knowledge
AVFT
(7) Physical discomforts Average 22 76 G. Satisfaction with how
Low 1 3 antihemophilic treatment 0a6 29 5.50 ± 0.16 0.03 90
adapts to your lifestyle
High 2 7
(8) Feelings about the disease Average 27 93 H. Satisfaction with
0a6 29 5.90 ± 0.07 0.03 90 897
continuing treatment
Low 0 0
High 22 76 Mean 0a6 29 5.70 ± 0.06
(9) Social aspects Average 7 24 Typified Dimensions from A to H
Low 0 0
High 14 48
(10) Emotional aspects Average 13 45 Associations between dimensions and questionnaires
Low 2 7 Table 3 presents results from bivariate Pearson correlations be-
High 29 100 tween dimension data obtained from the QoLHMex test. Each
(11) Future Average 0 0 dimension was assigned a number from 1 to 13.
Low 0 0
High 5 17 Table 3. Pearson’s bivariate correlation between data from QOL-
Mex test dimensions.
(12) School or work absenteeism Average 21 72
(1) (3) (4) (5) (6) (7) (9) (10) (13)
Low 3 10
(2) 0.498** 0.398**
High 21 72 (5) 0.375* -0.567** -0.412*
(13) Joint problems Average 8 28 (13) 0.372* 0.412*
Low 0 0 QoL
0.464* 0.469* 0.503* 0.446* 0.447* 0.666***
total
High 22 76
*. Correlation is significant at 0.05 level (bilateral). **. Correlation is significant at
Total Average 7 24 0.01 level (bilateral).
Low 0 0
www.revistaavft.comNumbers are dimensions typified in QoL-MeX questionnaire (1 Statement of principal findings
to 13), see Table 1. In relation to QoL perception, these results represent the first
data in Colombia where QoL is correlated with clinical variables
Table 4 shows the results of Pearson’s bivariate correlation and TS in hemophiliacs, which constitutes the main findings
between data from the TS test and some dimensions of the of this study. Dimensions where patients presented lower QoL,
QoLHMex Test. were: knowledge about the disease, physical discomforts, emo-
tional aspects, and school or work absenteeism, which is justi-
Table 4. Correlation between dimensions of QoL-MEX test vs TS
test fied, considering that are patients with moderate-to-severe he-
mophilia who consume prophylactic treatment with factor con-
Dimensions (1) (2) (6) (7) (12)
centrates. It is noteworthy that out of 7 patients with average
D. 0.406*
QoL perception all were adults, similar results to those reported
E. -0.368* -0.391*
by Dekoven et al. in 2012, who through a specific questionnaire
F. 0.,407*
G. -0.407*
determined that adults with hemophilia present greater physi-
cal disabilities25. Most studies using specific QoL questionnaires
H. 0.486**
**. Correlation is significant at 0.01 level (bilateral).*. La correlación es significante al
have found a clear relationship between QoL and physical dis-
nivel 0,05 (bilateral) (delete). Numbers are dimensions typified in QoL-MeX question- abilities such as hemarthrosis and arthropathies26,27.
naire (1 to 13), see Table 1; and letters are variables of the TS questionnaire, see Table 2.
Overall, patients showed great satisfaction regarding their an-
Table 5 exhibits associations between hemophilia severity and tihemophilic treatment. It should be noted that even though
QoL. It can be seen that 83.33% of patients with average QoL the used questionnaire was adapted from ARPAS I study carried
had severe hemophilia, while only 52% of patients with high out in patients with HIV28, pharmacochemistry experts and psy-
QoL presented severe hemophilia. chologists validate it by verifying the objectivity of the answers.
In addition, a consistency analysis with Cronbach’s alpha was
Table 5. Relationship between clinical severity and QoL.
also conducted (0.63). Results suggest that patients embrace
QoL level
Clinical severity Total treatment with factor concentrates and know how important
Low % Average % High % it is for their lives, which is why receiving medication on time is
Moderate 0 0 1 16.67 11 47.83 12 reflected as a satisfactory condition22.
Severe 0 0 5 83.33 12 52.17 17
Total 0 0 6 20.69 23 79.31 29 QoLHMex test showed that the self-esteem dimension has a clear
correlation with concentration and knowledge about the disease
QoL level with R2 of 0.498** and 0.398**, respectively. Self-esteem and
Clinical severity Total self-concept can affect memory, activity level, and concentration
Low % Average % High %
capacity in everyday life, including treatment dynamics, this man-
Moderate 0 0 1 0.08 11 91.66 12
ifests more frequently in adolescents, who according to a report
Severe 0 0 5 29.41 12 70.58 17
by Cassis in 20072, may neglect medication and physiotherapy as
Total 0 0 6 20.69 23 79.31 29
they prefer to ignore the medical complications and treatment
importance, this is also related to the dimension knowledge
about the disease, since greater knowledge means greater self-
898 Discussion esteem, similarly teens are often focused on the present and may
not consider future consequences2.
86% of patients from this study presented HA and 14% HB,
these findings are in agreement with those published by Sousa Knowledge about the disease dimension was directly correlated
et al. in 201324 who conducted a study in the hematology cen- with risks showing an R2 = 0.375*, this suggests that patients
ter of Paraiba-Brazil. In addition, Stonebraker’s study in 2011, who know more about hemophilia are more aware of both
on the prevalence of hemophilia worldwide, reported similar present and future risks. However, an inverse correlation was
statistics to those found by this work. Similarly, the report situa- appreciated between knowledge about the disease and the di-
tion of Hemophilia in Colombia published by the National Fund mensions of physical discomfort and emotional aspects, with
for high-cost diseases stated that HA represented 83.3% of he- R2 of -0.567** and -0.412, respectively, which is also under-
mophiliacs3,23,24. standable since a direct correlation was found between the di-
mensions of Joint Problems, physical discomfort and emotional
Regarding prophylactic treatment, the situation of Hemophilia aspects (R2 = 0.372* and 0.412* respectively), this is probably
in Colombia reported that 60.6% of patients with HA receive because when patients know about their disease, reduction of
prophylactic treatment and 3.7% receive prophylactic treat- physical discomforts can be achieved by taking necessary pre-
ment plus on-demand treatment, which are similar outcomes cautions, and by being concerned about complications that may
to those presented by this study. In Colombia, 55.4% of pa- come from the condition, patients who know and understand
tients with HB receive prophylactic treatment, and 3.6% receive the risks of hemophilia will have better chances at prevention,
prophylactic treatment plus on-demand. Prophylactic treatment unlike those who are unaware. Likewise, when joint problems
was more frequent since patients presented moderate-to-se- appear in hemophiliac patients, physical discomforts increase,
vere hemophilia24. and the emotional aspect is more affected, therefore it becomes
important to work on self-confidence and self-knowledge.Patients with high and average QoL were directly correlated These results could be interpreted within the context of the
with QoLHMex test dimension family support, activity level, larger literature that, despite hemophilia severity, patients have
physical discomforts, emotional aspects, and social aspects (R2 a high QoL perception, which is contradictory to what Osorio et
= 0.464*; 0.469 *; 0.503*; 0.446*; 0.447* and 0.666***, re- al. reported in 201115, where only 15.8% of patients with se-
spectively). This result shows that patients QoL perception have vere hemophilia presented high QoL perception, but it is similar
a clear correlation to dimensions associated with the pathol- to what Azjen and Fishbein reported in 1980 in their theory of
ogy, both physically and psychologically; a similar outcome was reasoned action30.
reported by Carruyo-Vizcaíno et al. in 200431 were it was sug-
gested that the mental health of individuals with hemophilia Strengths and limitations
depends on the family environment since they are an important One limitation of this and other studies on hemophiliac patients
part of a comprehensive treatment, and families’ attitude to- is that there is not enough literature that validates or generates
wards the disease can influence on clinical improvement and QoL tests in Spanish. However, the main strength of our study
response to treatment29. is that emerges as a proposal for future research.
Results from this study agree to the “Theory of reasoned ac- Implications for policy, practice and research
tion”30, where authors reported the Attitude Model in Pa- Few studies in Colombia evaluate the quality of life of hemo-
Archivos Venezolanos de Farmacología y Terapéutica
tients with Hemophilia (Modelo de Actitud en Pacientes con philia patients on prophylactic therapy with coagulation factors
Hemofilia, MAPACHE, in Spanish), which stated that 72% of using a specific quality of life instrument in Spanish, so this first
hemophiliacs gave greater importance to disease clinical as- exploration constitutes a valuable input to be applied in health
Volumen 40, número 9, 2021 ISSN 2610-7988
pects, 40% knew general aspects of the condition, and only institutions that receive hemophilia patients, to implement poli-
18% gave importance to factor deficiency, its treatments, and cies and action plans aimed at improving the quality of life of
psychosocial aspects. MAPACHE got a slightly positive overall patients at the regional and national level.
attitude (4.44±1.12 EE) towards disease in most hemophiliacs
(74.5%)29.
Conclusions
Regarding TS vs QoLHMex questionnaire, correlation of vari-
able Satisfaction with treatment requirements with physical dis- This study constitutes one of the first investigations in the Ca-
comfort dimension was 0.406*, while the correlation between ribbean Coast of Colombia where QoL of hemophiliac patients
Satisfaction with treatment comfort and physical discomforts is evaluated, therefore the impact of this disease on function-
presented R2 of -0.368*, thus showing direct and inverse cor- ality and well-being was also assessed. We can conclude that
relations, respectively. It can be deduced that a greater comfort QoL perception of patients was high despite being diagnosed
with treatment results in less physical discomfort, some patients as moderate-to-severe hemophiliacs, in addition, TS was also
stated that when treatment is more demanding, it could cause high, having a positive correlation with some QoL aspects di-
more discomfort at the time of application and because of ac- rectly related to hemophilia and emotional aspects.
AVFT
quisition difficulties, this was also validated by the inverse cor-
relation obtained between the variable Satisfaction with treat- Acknowledgments: Authors give special thanks to Maria Del
ment comfort and Work or school absenteeism dimension with Socorro Mendoza Perez (Vice President of the Atlantic Coast
R2 of -0.391, which suggest that patients who feel more com- Chapter of the Colombian Hemophilia League). And to psychol-
ogist Maricela Osorio Guzmán Ph.D. 899
fortable with their treatment, present less absenteeism.
The variable Satisfaction with disease knowledge presented a Author Contributions Antistio Alvíz Amador designed, per-
direct correlation with the self-esteem dimension (R2 = 0.407*), formed, analyzed, and wrote the research paper; Antonio Diaz
thus showing that patients who are more aware of their disease Caballero assisted with data analysis and writing of the paper,
have higher self-esteem, corroborating like this the direct cor- and Arnulfo Taron Dunoyer designed and performed of data
relation between these two dimensions of QoLHMex test. Like- analysis. All authors revised the manuscript and approved the
wise, it is important to mention that the calculated correlation ultimate version.
between the variable’s knowledge about the disease from both
Compliance with ethical standards
questionnaires recorded equal information, which constitutes
reliability in applied instruments. Conflict of interest
An inverse correlation was obtained between the variable Satis- The authors declare no conflict of interest
faction with how antihemophilic treatment adapts to your life-
style and Risks dimension, (R2 = -0.407*), adaptation to treat- Ethical Considerations
ment means fewer risks, which is logical since patients who
are more adapted to their treatment have less probability of The authors documented the information of hemophiliac pa-
suffering unexpected medical events. Finally, Satisfaction with tients following guidelines of Resolution 8430 of 1993, of the
continuing treatment and the concentration dimension showed Ministry of Health of the Republic of Colombia. Helsinki Report
a direct correlation (R2 = 0.486**), greater satisfaction with was also accepted as an ethical benchmark in this research.
lifetime treatment contributes to a better concentration capac-
ity and more responsiveness to environmental risk factors.
www.revistaavft.comData availability References
The personal data that allowed the realization of the present
1. Ministerio de salud y protección social, salud idete. Protocolo clínico
study are kept in an Excel database with the information of para tratamiento con profilaxis de personas con hemofilia a severa sin
each participating patient, these could not be available without inhibidores. 2015.
the patient’s personal information, since this violates the ethical
principle of confidentiality according to the Colombian regula- 2. Cassis FRMY. Atención psicosocial para personas con hemofilia. WFH.
2007.
tions Resolution 8430 of 1993.
3. Stonebraker JS, Unidos E, Bolton-maggs PHB, Unido R, Soucie JM,
The quality of life data generated in the present study are in Brooker M. H echos y C ifras informes de prevalencia de la hemo-
an Excel database and could likewise be provided without the filia alrededor del mundo College of Management. Haemophilia.
personal information of patients. 2011;16(8):20-32.
Short title: Quality of life of hemophiliacs 4. Acuña Merchan Lizbeth et al. Situación de la Hemofilia en Colombia.
2019.
Conflict of interests: None declared by the authors.
5. Consenso de médicos Especialistas en Hemofilia de la Republica Ar-
gentina. Guía de Tratamiento de la Hemofilia. Buenos Aires; 2011.
Place of realization: University of Cartagena, Faculty of Pharma-
ceutical Sciences. 6. Cuellar F, Lozano J, Sarmiento J, Villanueva L, Alvarez ML, Murillo
LM MM. De Las Hemofilias A y B En Medellin. Acta Medica Colomb.
Acknowledgments: Authors give special thanks to Maria Del 1985;10(5):192-6.
Socorro Mendoza Perez (Vice President of the Atlantic Coast
7. Ermeo S, Ilva C, Onseca D, Estrepo C. Colombia Médica Hemofilia:
Chapter of the Colombian Hemophilia League). And to psychol-
diagnóstico molecular y alternativas de tratamiento Colombia Médica.
ogist Maricela Osorio Guzmán Ph.D. Colomb Medica. 2007;38(3):308-15.
Author Contributions Antistio Alvíz-Amador designed, per- 8. Fundación de la Hemofilia. Guía de Tratamiento de la Hemofilia. Fun-
formed, analyzed, and wrote the research paper. Antonio Diaz dacion de hemofilia. Buenos Aires; 2011.
assisted with data analysis and writing of the paper. Arnulfo
9. García Barrado, Ana I. Valoracion de la Artropatia hemofiliza y su evo-
Taharon Dunoyer designed and performed data analysis. All au- lucion mediante escalas de radiologia simple y resonacia magnetica.
thors revised the manuscript and approved the ultimate version. Universidad de zaragoza; 2014.
Compliance with ethical standards 10. Gilbert MS. Complicaciones Musculoesqueleticas De La Hemofilia: Las
Conflict of interest The authors declare no conflict of interest Articulaciones. Federacion Mundial de Hemofilia. 1892.
11. Merchán Rodríguez. Problemas ortopédicos del paciente hemofílico
Ethical Considerations Authors documented the information of
adulto Orthopaedic problems of adult hemophiliacs. Rev Ortop Trau-
hemophiliac patients following guidelines of Resolution 8430 matol. 2001;45(2):151-9.
of 1993, of the Ministry of Health of the Republic of Colombia.
Helsinki Report was also accepted as an ethical benchmark in 12. Srivastava A., Brewer A. K, Mauser-Bunschoten EP, Key NS, Kitchen S,
this research. Llinas a., et al. Guidelines for the management of hemophilia. Haemo-
philia. 2013;19(1).
Abbreviations 13. Benítez Aranda H., Castro Noriega Sonia., Esparza Flores María.,
900
González Martínez Francisco j. MRFJ. Algoritmos Ortopedia y rehabili-
CNS: Central Nervous System tación en la hemofilia. 1.a ed. Biotherapies for life CSL Behring, editor.
México D.F: Guías nacionales de tratamiento; 2015. 1-38 p.
HA: Hemophilia A
14. Min salud i. protocolo clínico para tratamiento con profilaxis de perso-
HB. Hemophilia B nas con hemofilia a severa sin inhibidores. Bogota DC; 2015.
QoL: Quality of life 15. Osorio Guzmán Maricela, Marín Palomares Teresa BRGE& RONG.
Calidad de Vida de Pacientes Pediátricos con Hemofilia. Consulta Ex-
QoLHMex: Quality of Life Questionnaire Hemophilia Mexico terna de un Hospital Público de la Ciudad de México. Rev Psicol GEPU.
2013;4(1):11-26.
TS: Treatment satisfaction
16. Sarmiento, S., Carruyo-Vizcaíno, C., Carrizo, E., Vizcaíno, J. C., Artea-
ga-Vizcaíno, M., Vizcaíno G. Funcionamiento social en niños hemofíli-
WFH: World Federation of Hemophilia
cos. Análisis de encuesta para determinar factores psicopatológicos de
riesgo. Rev Méd Chile. 2006;134: 53-59.
17. Srivastava a, Brewer a K, Mauser-Bunschoten EP, Key NS, Kitchen S, Lli-
nas A, et al. Guidelines for the management of hemophilia. Haemoph
Off J World Fed Hemoph. enero de 2013;19(1):e1-47.
18. Grass M, Fernando L. Calidad de vida y hemofilia: Una revisión de la
literatura Quality of life and hemophilia: A literature review. Rev CES
Psicol. 2015;8(1):169-91.
19. la Osorio Guzmán M, ia Bazán Riverón GE. Psychometric properties ofthe quality of life questionnaire in pediatric patients with hemophilia
Mexico (QoLHMEX). Rev Electrónica Sicol Iztacala. 2012;15(3):1112-
28.
20. Escobar-p J, Cuervo-Martínez A. Validez de contenido y juicio de ex-
pertos: UNA. Av En Medicion. 2008;6:27-36.
21. Ventura Cerda JM, Casado Gomez M A., Morales Gonzalez JM, Orte-
ga Valin L, Ibarra Barrueta O, Escobar Rodriguez I. Caracteristicas psi-
comètricas de la escala de satisfaccion con el tratamiento antirretrovi-
ral (ESTAR): Estudio ARPAS (I). Farm Hosp. 2007;31(6):331-9.
22. Alviz Antistio., Martinez Julian., Caraballo Roger. CT. Adherencia al
tratamiento antiretroviral y calidad de vida de pacientes VIH-SIDA
de Cartagena desde la optica de la atencion farmaceutica. Vitae.
2013;57(s105):105.
23. Sousa ET De, Veloso HH, Silva NDA Da, Araújo JSM De. Perfil epidemi-
ológico dos portadores de hemofilia do hemocentro da Paraíba. Rev
Odontológica Bras Cent. 2013;22(61):103-9.
Archivos Venezolanos de Farmacología y Terapéutica
24. Acuña Merchán Lizbeth, Sánchez Quintero patricia, Soler Voney Luis
Alberto AL fernanda. La situacion de la Hemofilia en Colombia 2015.
Volumen 40, número 9, 2021 ISSN 2610-7988
Cuenta de Alto Costo: Fondo Colombiano de enfermedades de Alto
Costo. 2015;1-95.
25. Dekoven M, Wisniewski T, Petrilla a., Holot N, Lee WC, Cooper DL,
et al. Health-related quality of life in hemophilia patients with inhibi-
tors and their caregivers. Haemophilia. 2013;19(2):287-93.
26. Mackensen V, Gringeri A, Siboni SM, Mannucci PM. Health-relat-
ed quality of life and psychological well-being in elderly patients
with haemophilia. Haemoph Off J World Fed Hemoph. mayo de
2012;18(3):345-52.
27. Ferreira AA, Leite ICG, Bustamante-Teixeira MT, Corrêa CSL, da Cruz
DT, Rodrigues DDOW, et al. Health-related quality of life in hemophilia:
results of the Hemophilia-Specific Quality of Life Index (Haem-a-Qol)
at a Brazilian blood center. Rev Bras Hematol E Hemoter. enero de
2013;35(5):314-8.
AVFT
28. Cerdá, Ventura. Martín C MVerdugo, Tébenes Cortés, Casado Gómez.
Adherence, satisfaction and health-related quality of life in HIV-infect-
ed patients with antiretroviral therapy in Spain. The ARPAS study. Farm
Hosp. 2014;38(4):291-9.
29. Carruyo-Vizcaíno Cecilia, Gilberto Vizcaíno Cecilia, Carrizo Edgardo, 901
Arteaga-Vizcaíno Melvis SS y V-CJennifer. Actitud de los Individuos
Adultos con Hemofilia hacia su Enfermedad. Invest Clín. 2004;45(3).
30. Vallerand RJ, Deshaies P, Cuerrier JP, Pelletier LG, Mongeau C. Ajzen
and Fishbein’s Theory of Reasoned Action as Applied to Moral Behav-
ior: A Confirmatory Analysis. J Pers Soc Psychol. 1992;62(1):98-109.
www.revistaavft.comYou can also read
