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Rubén Cuesta-Barriuso,1,2 Ana Torres-Ortuño,3 Joaquín Nieto-Munuera,3 José Antonio López-Pina4 1Department of Physiotherapy, University of Murcia, Murcia, Spain; 2Royal Victoria Eugenia Foundation, Madrid, Spain; 3Department of Psychiatry and Social Psychology, University of Murcia, Murcia, Spain; 4Department of Basic Psychology and Methodology, University of Murcia, Murcia, SpainCorrespondence: Rubén Cuesta-BarriusoDepartment of Physiotherapy, University of Murcia, Campus Espinardo, Murcia, 30200, SpainTel +34 868 887 286Email ruben.cuestab@gmail.comBackground: Hemophilia is characterized by the development of joint bleeds that cause long-term joint damage (hemophilic arthropathy). Joint damage leads to disability and affects psychosocial aspects in patients with hemophilia.Objective: To compare the clinical situation, perception of disease and quality of life, and coping strategies in adult patients with hemophilia in El Salvador and Spain.Methods: In this comparative clinical study, 43 patients with hemophilia aged between 18 and 50 years old from Spain and El Salvador participated. After obtaining the patients’ consent, they completed the Illness Perception Questionnaire-Revised (IPQ-R), Hemophilia-QoL and Inventory of Coping strategies questionnaires. Joint status was assessed using the Hemophilia Joint Health Score and based on a record of clinical and treatment data.Results: Hemophilia patients from Spain showed an improved perception of quality of life (p < 0.05), although there were only differences in the self-criticism variable (p = 0.04) for coping strategies. Joint damage and age correlated (p < 0.05) negatively with perception of disease, perceived quality of life and coping strategies in both populations. There were differences (p < 0.05) between the two populations based on HIV and HCV coinfections in perception of disease and perceived quality of life.Conclusion: Patients with hemophilia in El Salvador exhibit a poorer perception of disease and quality of life. Despite differences in access to treatment from one country to the other, there is no difference in coping with the disease. Older patients are better able to adapt to the disease.Keywords: hemophilia, joint disease, quality of life, illness perception, coping strategies

Ana Torres-Ortuño,1 Rubén Cuesta-Barriuso,2,3 Joaquín Nieto-Munuera,1 Álvaro Castiello-Munuera,1 José Antonio López-Pina4 1Department of Psychiatry and Social Psychology, University of Murcia, Murcia, Spain; 2Department of Physiotherapy, University of Murcia, Murcia, Spain; 3Royal Foundation Victoria Eugenia, Madrid, Spain; 4Department of Basic Psychology and Methodology, University of Murcia, Murcia, SpainCorrespondence: Rubén Cuesta-BarriusoDepartment of Physiotherapy, University of Murcia, Murcia, SpainTel +34 868887286Email ruben.cuestab@gmail.comIntroduction: The episodic or on-demand administration of clotting factor concentrates in hemophilia patients in the event of hemorrhage is employed to restore hemostasis. Adherence to on-demand treatments needs to be assessed in order to improve patient management, avoiding adverse effects and serious clinical complications.Aim: To validate the Spanish version of the treatment adherence scale in patients with hemophilia, namely, Validated Hemophilia Regimen Treatment Adherence Scale-PRN (VERITAS-PRN).Methods: Eighty-five patients were recruited in three hemophilia patient associations in Spain. The VERITAS-PRN scale was adapted through a back-translation process from English to Spanish. A native Spanish bilingual translator translated the scale from English to Spanish, and subsequently another native English bilingual translator translated the scale from Spanish to English. The scale was applied twice (two months apart) to assess test–retest reliability.Results: Internal consistency reliability was slightly lower in the VERITAS-PRN in Spanish (0.80) versus the English version (0.85). There were no differences (p > 0.05) between the means of the dimensions or in the total scores between the sample of patients in Spain and the USA. The test–retest reliability coefficient of the scores on the total scale was 0.80 [CI, 0.74– 0.86]. The test–retest reliability coefficient was greater than 0.90 in all subscales.Conclusion: The Spanish version of VERITAS-PRN has high consistency and empirical validity. This scale is useful for assessing the degree of adherence to treatment in adult patients with hemophilia following episodic infusion treatment.Keywords: hemophilia, adherence, validity, reliability, on-demand treatment, VERITAS-PRN

Ana Torres-Ortuño,1,2 Rubén Cuesta-Barriuso,3,4 Joaquín Nieto-Munuera,1 Álvaro Castiello-Munuera,1 Manuel Moreno-Moreno,2,4,5 José Antonio López-Pina6 1Department of Psychiatry and Social Psychology, Faculty of Medicine, University of Murcia, Murcia, Spain; 2Association of Hemophilia, Murcia, Spain; 3Department of Physiotherapy, School of Biomedical and Health Sciences, European University of Madrid, Madrid, Spain; 4Royal Foundation Victoria Eugenia, Madrid, Spain; 5Hematology and Hemotherapy Service, University Clinical Hospital Virgen de la Arrixaca, Murcia, Spain; 6Department of Basic Psychology and Methodology, Faculty of Psychology, University of Murcia, Murcia, SpainCorrespondence: Ana Torres-OrtuñoDepartment of Psychiatry and Social Psychology, Faculty of Medicine, University of Murcia, Campus de Espinardo s/n, 30100, SpainTel +34 868887170Fax +34 913508Email atorres.ortuno@gmail.comPurpose: To build a multidimensional questionnaire of adherence for a patient with hemophilia that includes not only clinical but also psychosocial aspects.Patients and Methods: One hundred and forty-six patients with haemophilia (A and B) were recruited from several Hemophilia Treatment Centers for this study. The recruitment was performed through a personal interview (20– 25 mins for each patient). A literature review was carried out (different databases). In the first version (136 items), all items were subjected to an external judgment (experts in hemophilia) and also presented and discussed with a group of patients. It was made a study of content validity and homogeneity index and reliability coefficients of score were calculated with an alpha coefficient. Empirical validation was made with Pearson correlation.Results: The Haemo-Adhaesione scale was composed of 5 dimensions and 10 questions about basic haemophilia concepts. It was shown to be valid and reliable to assess adherence in the Spanish population. Its internal consistency was good in all dimensions. The Rasch model was used to confirm the multidimensional structure of the scale. Significant and negative correlations were observed with the VERITAS-Pro and VERITAS-PRN scale in all dimensions, and in the total score.Conclusions: The Haemo-Adhaesione scale is a good measure of adherence for PWH. Its multidimensional structure favors the inclusion of the objective and subjective aspects implicit in its definition, as well as its dynamic nature. Patients with greater adherence are those who have more awareness of their disease, and as a result, they are more compliant with prescription and their self-care. It also discriminates between patients who follow one treatment or another.Keywords: hemophilia, adherence, young, adults, scale

Rubén Cuesta-Barriuso,1–3 Ana Torres-Ortuño,4 Pilar Galindo-Piñana,4 Joaquín Nieto-Munuera,4 Natalie Duncan,5 José Antonio López-Pina6 1Department of Physiotherapy, School of Biomedical and Health Sciences, European University of Madrid, 2Fishemo, Centro Especial de Empleo, Spanish Federation of Hemophilia, 3Royal Foundation Victoria Eugenia, Madrid, 4Department of Psychiatry and Social Psychology, Faculty of Medicine, University of Murcia, Murcia, Spain; 5Indiana Hemophilia & Thrombosis Center, Indianapolis, IN, USA; 6Department of Basic Psychology and Methodology, Faculty of Psychology, University of Murcia, Murcia, Spain Purpose: We aimed to conduct a validation in Spanish of the Validated Hemophilia Regimen Treatment Adherence Scale – Prophylaxis (VERITAS-Pro) questionnaire for use in patients with hemophilia under prophylactic treatment.Patients and methods: The VERITAS-Pro scale was adapted through a process of back translation from English to Spanish. A bilingual native Spanish translator translated the scale from English to Spanish. Subsequently, a bilingual native English translator translated the scale from Spanish to English. The disagreements were resolved by agreement between the research team and translators. Seventy-three patients with hemophilia, aged 13–62 years, were enrolled in the study. The scale was applied twice (2 months apart) to evaluate the test–retest reliability.Results: Internal consistency reliability was lower on the Spanish VERITAS-Pro than on the English version. Test–retest reliability was high, ranging from 0.83 to 0.92. No significant differences (P>0.05) were found between test and retest scores in subscales of VERITAS-Pro. In general, Spanish patients showed higher rates of nonadherence than American patients in all subscales.Conclusion: The Spanish version of the VERITAS-Pro has high levels of consistency and empirical validity. This scale can be administered to assess the degree of adherence of prophylactic treatment in patients with hemophilia. Keywords: hemophilia, adherence treatment, validity, reliability