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1.
J Clin Med ; 12(2)2023 Jan 04.
Artigo em Inglês | MEDLINE | ID: mdl-36675342

RESUMO

We assessed the humanistic and economic burden of chronic red blood cell (RBC) transfusions on patients with ß-thalassemia. This cross-sectional, US-based study included adults (≥18 years) who self-reported a ß-thalassemia physician diagnosis and had received ≥1 RBC transfusion in the past 6 months. The outcomes included the Functional Assessment of Cancer Therapy-Anemia (FACT-An), Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, and ad hoc questions about treatment experience, side effects, direct/indirect costs, and psychological burden. Overall, 100 patients completed the survey, of whom 70% experienced "moderate" to "extremely high" burden due to RBC transfusions, 81% reported iron overload, 42% reported compromised social lives. The mean FACT-An score was 132 (higher score indicates better outcomes; 0-188). Mean scores were 33/52 for fatigue and 20/28 for anemia symptoms in the previous 7 days. Health-related quality of life (HRQoL) temporarily improved after RBC transfusion, although patients continued to experience mild-to-severe depression and anxiety, substantial direct costs, compromised employment, and suboptimal quality of life. Over 6 months, patients dedicated a mean of 173 h to transfusion requirements and incurred out-of-pocket costs of USD 2239 for transfusions and USD 896 for additional care costs. These findings highlight the need for new treatment options to improve patient HRQoL and economic outcomes.

2.
Int J Nephrol Renovasc Dis ; 14: 105-115, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33880055

RESUMO

BACKGROUND: Autosomal dominant polycystic kidney disease (ADPKD) is a rare inherited kidney disorder with considerable symptom burden and negative effects even in early-stage disease. Patients' reporting of ADPKD symptom burden may differ from physicians' impressions. In this quantitative, cross-section survey study, we evaluated patient and physician assessments of symptom burden at early- and late-stage ADPKD. METHODS: In the United States, 300 patients with ADPKD and 155 physicians treating patients with ADPKD completed online surveys administered by Kantar. Disease stage was categorized as early (chronic kidney disease [CKD] stages 1-3) or late (stages 4-5). Patients completed the Work Productivity and Activity Impairment Questionnaire and reported current disease symptoms. Patients and physicians assessed impacts of ADPKD on daily life and burden of specific symptoms. Statistical analyses compared patient versus physician responses stratified by early- versus late-stage ADPKD. RESULTS: We found that impairment in work productivity was statistically greater in late- versus early-stage CKD. Compared with physicians' impressions, patients were more likely at early stages and less likely at later stages to report a moderate/strong impact of ADPKD on daily life. Among patients, 74% with early- and 88% with late-stage disease reported that ADPKD caused them to modify their daily lives. In early-stage disease, patients reported a statistically greater burden from feeling exhausted and less burden from dull kidney pain, cardiovascular problems, high blood pressure, and liver cysts than physicians assumed. At later stages, patients reported feeling exhausted and skeletal/joint pain as more burdensome, and frequent urination, high blood pressure, liver cysts, and hematuria as less burdensome, compared with physicians' impressions. CONCLUSION: The results of this survey study demonstrate a disconnect between patients' experiences and physicians' awareness of the burden of ADPKD and highlight the need for more patient/physician discussion of symptoms and disease management.

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