Risk of major comorbidities among workers with hemophilia

Chu, Wei‐Min; Ho, Hsin-En; Wang, Jiaan-Der; Chan, Wei-Cheng; Liou, Yi‐Sheng; Ho, Wen‐Chao; Hu, Sung-Yuan; Tsan, Yu‐Tse

doi:10.1097/md.0000000000009803

Cited by 11 publications

(9 citation statements)

References 32 publications

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“…These results are aligned with a previous study by (Chu et al, 2018), who identified problems in physical health and mobility as a consequence of bleeding episodes.…”

Section: Educationsupporting

confidence: 91%

Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children’s Hospital Multan

Afzal

Hussain

Rehman

2021

GSR

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The main aim of the study was to explore the perceived socio-economic burden on parents of children suffering from haemophilia and societal behavior towards patient and caregiver. A qualitative approach was utilized to narrate experiences of parenting a hemophilic child. To fulfil the said objective, 14 parents were interviewed by using sequential sampling with the help of an interview guide. All the informants included in the study were taken from Children hospital, Multan. The researcher analyzed all emerging themes from text to disseminate information. Results revealed that the majority of the parents were less educated and belonged to a middle-class background. And having a child with Haemophilia is a life-shifting phenomenon for parents. Lack of awareness regarding disease among mother caregiver was also identified as an addition to parent's miseries. Most patients were suffered from Haemophilia A, with poor health status. However, patient's caregivers were content with behavior of their family members, doctors and other medical staff. On the basis of the present findings, researcher made a recommendation to endorse patient-centred care for haemophilic patients and recognition of patient's illness and reconciliation with society.

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“…These results are aligned with a previous study by (Chu et al, 2018), who identified problems in physical health and mobility as a consequence of bleeding episodes.…”

Section: Educationsupporting

confidence: 91%

Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children’s Hospital Multan

Afzal

Hussain

Rehman

2021

GSR

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“…More likely to suffer from arthropathy/arthritis, more likely to require knee/hip replacement compared with the general population. 1,56 Poor mobility, self-care issues, and inability to perform usual daily activities 57,58 Social isolation Inability to participate in social or sporting activities 59 Pain Higher pain levels and functional impairment associated with anxiety, depression and unemployment. 60,61 Pain/discomfort is an area where most individuals report experiencing 'extreme' issues.…”

Section: Burden Causementioning

confidence: 99%

How to discuss gene therapy for haemophilia? A patient and physician perspective

et al. 2019

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Gene therapy has the potential to revolutionise treatment for patients with haemophilia and is close to entering clinical practice. While factor concentrates have improved outcomes, individuals still face a lifetime of injections, pain, progressive joint damage, the potential for inhibitor development and impaired quality of life. Recently published studies in adeno‐associated viral (AAV) vector‐mediated gene therapy have demonstrated improvement in endogenous factor levels over sustained periods, significant reduction in annualised bleed rates, lower exogenous factor usage and thus far a positive safety profile. In making the shared decision to proceed with gene therapy for haemophilia, physicians should make it clear that research is ongoing and that there are remaining evidence gaps, such as long‐term safety profiles and duration of treatment effect. The eligibility criteria for gene therapy trials mean that key patient groups may be excluded, eg children/adolescents, those with liver or kidney dysfunction and those with a prior history of factor inhibitors or pre‐existing neutralising AAV antibodies. Gene therapy offers a life‐changing opportunity for patients to reduce their bleeding risk while also reducing or abrogating the need for exogenous factor administration. Given the expanding evidence base, both physicians and patients will need sources of clear and reliable information to be able to discuss and judge the risks and benefits of treatment.

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“…La hemofilia es una enfermedad hemorrágica, hereditaria, recesiva y ligada al sexo, está producida por la deficiencia del factor VIII de la coagulación para hemofilia A o del factor IX para hemofilia B (Mazepa et al, 2016;Peyvandi et al, 2016;Srivastava et al, 2020;Stonebraker et al, 2020). Las manifestaciones clínicas más frecuentes son las hemorragias, siendo las cerebrales las de mayor riesgo y las musculoesqueléticas las que producen mayores secuelas al comprometer la funcionalidad y calidad de vida de quien la padece (Barg et al, 2010;Berntorp, 2009;Chu et al, 2018;Fischer et al, 2005).…”

Section: Introductionunclassified

Adaptación cultural del cuestionario PedHAL (pediatric haemophilia activities list), Cali, Colombia (Cultural adaptation of the PedHAL (pediatric hemophilia activity list), Cali, Colombia)

Orejuela-Upegui

Fandiño-Losada²

2022

Retos

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Objetivo: Adaptar culturalmente el cuestionario PedHAL, al idioma español-colombiano. Métodos: Se realizaron 5 fases para este proceso; traducción, síntesis, retrotraducción, revisión por expertos y pretest. Participaron 31 menores con diagnóstico de hemofilia A severa, además de un grupo de 2 traductores y de 11 expertos. Resultados: Se encontraron diferencias semánticas en la retrotraducción que no afectan el constructo del instrumento, la estructura semántica fue orientada al contexto colombiano, se encuentran 13 ítems problemáticos. De las personas que participaron del estudio, se encontró que la media de edad de los niños fue de 12,03 años. Conclusión: Se propone versión en español de PedHAL, con 13 ítems problemáticos asociados a desempeño y contexto, que deberán considerarse en siguientes fases de validación de este instrumento. Abstract. Objective: To culturally adapt the PedHAL questionnaire to the Spanish-Colombian language. Methods: Five phases were carried out for this process: translation, synthesis, back-translation, review by experts and pretest. 31 children with a diagnosis of severe hemophilia A participated in this study, in addition to a group of 2 translators and 11 experts. Results: Semantic differences were found in the back-translation that did not affect the construct of the instrument, the semantic structure was oriented to the Colombian context, 13 problematic items were found. Of the people who participated in the study, the mean age of the children was 12.03 years. Conclusion: A Spanish version of PedHAL is proposed, with 13 problematic items associated with performance and context, which should be considered in subsequent phases of validation of this instrument.

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Risk of major comorbidities among workers with hemophilia

Abstract: Supplemental Digital Content is available in the text

Cited by 11 publications

References 32 publications

Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children’s Hospital Multan

Parents Perceived Burden, Societal Behavior, and Quality of Life of Patients with Hemophilia: A Case-Study of the Children’s Hospital Multan

How to discuss gene therapy for haemophilia? A patient and physician perspective

Adaptación cultural del cuestionario PedHAL (pediatric haemophilia activities list), Cali, Colombia (Cultural adaptation of the PedHAL (pediatric hemophilia activity list), Cali, Colombia)

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