RESUMEN
UNLABELLED: One of many challenges in the treatment of persons with haemophilia is the selection and application of appropriate pain-relieving therapies. The current situation of pain management for persons with haemophilia in Germany was evaluated using a survey with the intention of identifying potential areas for improvement. Results of 685 respondents showed that 86% experienced episodes of pain and that pain was already present in 66% of children and adolescents. Joint pain was the most common type of pain (92%), remarkably so even in 80% of young patients. Half of the patients received pharmacological therapy for the pain and 46% of the patients received physiotherapy. Priority and sequence of the contacted physicians and therapists for diagnosis and therapy is described. Satisfaction with pain therapy was expressed by 56% of participants and 18% felt their pain not treated sufficiently. CONCLUSION: The results of the survey will be used to develop measures for improvement of long-term care of haemophilia patients regarding pain therapy.
Asunto(s)
Artralgia/epidemiología , Artralgia/terapia , Hemofilia A/epidemiología , Manejo del Dolor/estadística & datos numéricos , Dimensión del Dolor/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Artralgia/diagnóstico , Causalidad , Niño , Preescolar , Comorbilidad , Femenino , Alemania/epidemiología , Encuestas de Atención de la Salud , Hemofilia A/diagnóstico , Hemofilia A/terapia , Humanos , Lactante , Recién Nacido , Masculino , Persona de Mediana Edad , Dimensión del Dolor/efectos de los fármacos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Prevalencia , Factores de Riesgo , Resultado del Tratamiento , Adulto JovenRESUMEN
Patients with haemophilia are growing older and may be faced with age-dependent co-morbidities. To evaluate the impact of growing age in patients with haemophilia, a questionaire was sent to members of German patients' organisations DHG and IGH with focus on medical care and psychosocial questions. This questionnaire was answered by 466 individuals (aged 50 years, 21-85 years), predominantly suffering from severe haemophilia. The majority of individuals considered the question of substitution of factor concentrates in case of bleeding as most important. Concerns were expressed regarding the financial situation and lack of medical care in higher age. The results provide an insight into issues of growing age from the patient's perspective.