RESUMO
OBJECTIVE: To assess patient-reported symptoms and burden of disease in relapsing polychondritis (RP). METHODS: Patients with RP completed a disease-specific online survey to identify symptoms attributed to illness. Patients were divided into subgroups based upon presence or absence of ear/nose, airway, or joint involvement. Pathway to diagnosis, treatment, and disease-related complications were assessed within each subgroup. RESULTS: Data from 304 respondents were included in this analysis. Prior to diagnosis, most patients with RP went to the emergency room (54%), saw > 3 physicians (54%), and had symptoms for >5 years (64%). A concomitant diagnosis of fibromyalgia and absence of ear/nose or joint involvement was associated with diagnostic delay >1 year. Common diagnoses prior to RP diagnosis included asthma in patients with airway involvement (35% versus 22%; P = 0.03) and ear infection in patients with ear/nose involvement (51% versus 6%; P < 0.01). Patients with joint involvement were more likely to receive a glucocorticoid-sparing agent (85% versus 13%; P < 0.01). Most patients reported a major complication, including disability (25%), tracheomalacia (16%), or hearing loss (34%). Patients with airway involvement reported more tracheomalacia (20% versus 4%; P < 0.01). Disability (24% versus 7%; P < 0.01) and hearing loss (39% versus 11%; P < 0.01) were prevalent in the joint involvement subgroup. CONCLUSION: Patient-reported data in RP highlight a significant burden of disease. Patterns of organ involvement may lead to diagnostic delay and influence treatment decisions, ultimately impacting the development of disease-related complications. Timely diagnosis, standardization of treatment approaches, and prevention of disease-related complications are major unmet needs in RP.
Assuntos
Medidas de Resultados Relatados pelo Paciente , Policondrite Recidivante/diagnóstico , Policondrite Recidivante/tratamento farmacológico , Perfil de Impacto da Doença , Inquéritos e Questionários , Análise de Variância , Estudos Transversais , Diagnóstico Tardio , Progressão da Doença , Feminino , Humanos , Modelos Logísticos , Masculino , Análise Multivariada , Percepção , Policondrite Recidivante/psicologia , Prognóstico , Qualidade de Vida , Índice de Gravidade de Doença , Estados UnidosRESUMO
The following case presents a 22-year-old woman with relapsing polychondritis and depression treated in liaison, consultation, and outpatient settings by one psychiatrist using a variety of techniques. The discussion focuses on the implications of the case for integrated medical model and psychotherapeutic care, and for technical aspects of the treatment of the dying patient.