Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey

Nazzaro, Ann-Marie; Owens, Sally; Hoots, W. Keith; Larson, Kelly

doi:10.2105/ajph.2005.075234

Cited by 47 publications

(89 citation statements)

References 9 publications

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“…In response to a questionnaire survey distributed between 2008 and 2009, 47 physicians from Europe, the US, Africa, Australia, and Central and South America reported that although they recommend bleeds be treated within 1 hour of onset, in practice only 64.6% of bleeds were treated within 1–2 hours 13. In a survey sponsored by the Centers for Disease Control and Prevention (CDC), only 31% of patients with hemophilia aged 13–21 years treated bleeding episodes within 1 hour, and 15% waited over 6 hours 14. When patients were queried, 29% replied that they did not recognize the bleeding episode, and 11% did not think the bleed was serious enough to warrant treatment.…”

Section: Barriers and Perceived Limitations To Early Treatmentmentioning

confidence: 99%

“…The storage and administration of clotting agents also present significant barriers to early treatment. In the aforementioned CDC-sponsored survey, 25% of patients who were not “early treaters” reported that they did not have clotting agent in their possession at the time of the bleed 14. Need for refrigeration is a further inconvenience and expense for patients, particularly those on prophylactic treatment, who must carry the clotting agents in a cooler during extended stays away from home.…”

Section: Barriers and Perceived Limitations To Early Treatmentmentioning

confidence: 99%

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Barriers and perceived limitations to early treatment of hemophilia

Saxena¹

2013

JBM

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Early treatment of bleeds in hemophilia patients, both with and without inhibitors, has been shown to be of immense benefit in the overall clinical outcome. Despite the advantages of treating the bleeding episodes early, significant barriers and limitations remain. The aim of this review is to highlight the various barriers and perceived limitations to early therapy of bleeding episodes, especially in patients who have developed inhibitors to factor VIII. The peer-reviewed literature was searched for articles on hemophilia patients, with and without inhibitors, and early treatment, to identify the barriers to early treatment and potential impact on patient outcomes. The most important barrier is the educational barrier, which involves lack of awareness among patients regarding the signs of a bleed, as well as importance of early therapy. It is also common for parents or caregivers of school-age children to exhibit inconvenience and scheduling barriers. Distance to the treatment center can also play a role here. Some patients experience financial barriers related to cost of clotting factor products, insurance coverage, or insurance caps and out-of-pocket costs. Rarely, there can also be problems related to venous access or home infusion. Lastly, multiple psychosocial barriers can prevent adherence to treatment regimens. Identification and addressing these individual barriers will result in improved compliance rates, prevent joint damage, be more cost-effective, and lead to better overall health of these patients.

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Section: Barriers and Perceived Limitations To Early Treatmentmentioning

confidence: 99%

Section: Barriers and Perceived Limitations To Early Treatmentmentioning

confidence: 99%

Barriers and perceived limitations to early treatment of hemophilia

Saxena¹

2013

JBM

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“…There are limited studies that assess the knowledge level of individual patients regarding the management of hemophilia [7,8,9]. An important finding of this study was that patients’ knowledge was not correlated with age, educational level, or disease severity.…”

Section: To the Editormentioning

confidence: 80%

Evaluation of Knowledge of Patients with Hemophilia Regarding Their Diseases and Treatment in Iran

Karimi

Zarei²,

Haghpanah³

et al. 2016

Tjh

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“…It emphasized that young people with chronic disorders need help to understand how they can prevent complications. The main points for the campaigns of prevention of complications of hemophilia should include physical activity to ensure healthy joints and treating of hemorrhagic episodes early and adequately (20) . In addition to failing to obtain regular treatment, for not believing in the possibility of improvement, the adolescents surveyed also considered that they were not being adequately attended, either because they had to wait for service on weekends, when they go to service with pain or because some visits did not meet their expectation, such as physical therapy, leading them to seek these in other institutions.…”

Section: Discussionmentioning

confidence: 99%

Dificuldades para enfrentar sozinho as demandas do tratamento: vivências do adolescente hemofílico

Vrabic¹,

Ribeiro

Ohara

et al. 2012

Acta paul. enferm.

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Objective: To understand the reasons why the adolescent hemophiliac does not adhere to hemophilia treatment. Methods: A qualitative study, conducted with seven adolescents, whose data were collected through semistructured interviews, using symbolic interactionism as the theoretical reference and interpretive interactionism as the methodology. Results: Adolescents can not meet the demands and diffi culties of the recommended treatment alone, they do not assume responsibilities inherent in this, and at the same time, judge what is appropriate treatment, while not valuing as essential the preventive aspects and feeling disbelief of its effectiveness against complications, as well as being dissatisfi ed with the care received in the service. Conclusions: The results reinforced the importance of family support to guarantee continuity of treatment for the adolescent hemophiliac and to provide additional subsidies to rethink care provided to them in specialized services, in order to facilitate the delivery of assistance geared to the demands of this population. Keywords: Hemophilia A; Adolescent health; Adolescent health services; Patient dropout; Pediatric nursing. RESUMOObjetivo: Compreender as razões pelas quais o adolescente hemofílico não adere ao tratamento de hemofi lia. Métodos: Estudo qualitativo, realizado com sete adolescentes, cujos dados foram coletados por entrevistas semiestruturadas, sendo o Interacionismo Simbólico o referencial teórico e o Interacionismo Interpretativo, o metodológico. Resultados: os adolescentes não conseguem enfrentar sozinhos as demandas e difi culdades do tratamento preconizado, por não assumirem as responsabilidades inerentes ao mesmo, além de julgarem que fazem o tratamento adequado, mesmo não valorizando os aspectos preventivos essenciais e perceberem-se descrentes de sua efetividade contra as complicações além de insatisfeitos com o atendimento recebido no serviço. Conclusões: os resultados reforçaram a importância de apoio da família para garantir a continuidade do tratamento ao adolescente hemofílico e oferecem subsídios para repensar a assistência prestada a eles nos serviços especializados, no sentido de favorecer a condução de um atendimento voltado às demandas dessa população. Descritores: Hemofi lia A; Saúde do adolescente; Serviços de saúde para adolescentes; Pacientes desistentes do tratamento; Enfermagem pediátrica RESUMEN Objetivo: Comprender las razones por las cuales el adolescente hemofílico no se adhiere al tratamiento de hemofi lia. Métodos: Estudio cualitativo, realizado con siete adolescentes, cuyos datos fueron recolectados por entrevistas semiestructuradas, siendo y Interaccionismo Simbólico el referencial teórico y el Interaccionismo Interpretativo, el metodológico. Resultados: los adolescentes no consiguen enfrentar solos las demandas y difi cultades del tratamiento preconizado, por no asumir las responsabilidades inherentes al mismo, además de juzgar que hacen el tratamiento adecuado, aunque no valorizando los aspectos preventivos esenciales y pe...

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Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey

Abstract: Young people with chronic disorders need help understanding that they can prevent complications. We identified key messages for a hemophilia prevention campaign, including exercising to ensure healthy joints and treating bleeding episodes early and adequately.

Cited by 47 publications

References 9 publications

Barriers and perceived limitations to early treatment of hemophilia

Barriers and perceived limitations to early treatment of hemophilia

Evaluation of Knowledge of Patients with Hemophilia Regarding Their Diseases and Treatment in Iran

Dificuldades para enfrentar sozinho as demandas do tratamento: vivências do adolescente hemofílico

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