HRQoL of NHL survivors may improve from baseline and becomes more comparable to general population HRQoL with longer survival. Overall HRQoL improvement is driven mostly by improvements in the physical domain.
Background and aims: Patients with acute intermittent porphyria (AIP) may suffer from acute nonspecific attacks that often result in hospitalizations or emergency room (ER) visits. Prior to the recent approval of givosiran (November 2019), hemin was the only FDA-approved therapy for AIP attacks in the US. Our aim was to estimate the annual healthcare utilization and expenditures for AIP patients treated with hemin using real-world data. Methods: Patients with !1 hemin claim and confirmed AIP diagnosis -1 inpatient claim or 2 outpatient claims !30 d apart for AIP (2015)(2016)(2017) or acute porphyria (prior to 2015)were identified in MarketScan administrative claims dataset between 2007 and 2017. Continuous enrolment for !6 months from confirmed diagnosis was required. A secondary analysis ("active disease population") limited the sample to adult patients with !3 attacks or 10 months of prophylactic use of hemin within a 12-month pre-index period. AIP-related care was defined by hemin use during an attack (daily glucose and/or hemin use) or prophylaxis (non-attack hemin use). Outcomes were annualized and expenditures were inflated to 2017. Results: Across 10 years, patients with a confirmed AIP diagnosis (N ¼ 8,877) and !1 hemin claim (N ¼ 164) were restricted by !6 months continuous follow-up (N ¼ 139). AIP patients were mostly female (N ¼ 112; 81%), had median age of 40 and 3 years average follow-up. Annualized average total expenditures for AIP-related care were $113,477. Annualized average all-cause (any diagnosis) hospitalizations were statistically significantly lower for patients treated with hemin prophylaxis vs. acute treatment (1.0 vs. 2.1; p < .001). In the secondary analysis (N ¼ 27), annualized average total expenditures for AIP-related care were higher ($187,480). Conclusions: For AIP patients treated with hemin, patients treated for acute attacks may use a greater number of resources compared to patients treated prophylactically.
Institutions involved in the training of healthcare professionals are exploring new ways to teach the humanistic aspects of medical care. An effective approach, one which models the collaborative principles behind patient-and family-centered care, is to involve patients and families in the educational process. This paper describes several curricular innovations that involve consumers as faculty. It addresses the rationale for and goals of these efforts, some considerations useful in planning, and a vision for the future.
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