PMID- 34938139
OWN - NLM
STAT- PubMed-not-MEDLINE
LR  - 20220429
IS  - 1179-271X (Print)
IS  - 1179-271X (Electronic)
IS  - 1179-271X (Linking)
VI  - 12
DP  - 2021
TI  - Work Outcomes Among Patients with Light Chain (AL) Amyloidosis: Findings from 
      Three Patient Cohorts.
PG  - 339-347
LID - 10.2147/PROM.S337676 [doi]
AB  - BACKGROUND: Light chain (AL) amyloidosis is a rare and progressive disease that 
      affects myriad organs and systems. Patients with cardiac involvement have the 
      highest risk of death. This report compiles findings across three cohorts of 
      patients with AL amyloidosis to understand patterns of employment and work 
      impacts. METHODS: Data came from three cohorts recruited through patient advocacy 
      organizations in the US. Patients in Cohort 1 completed the SF-36v2((R)) Health 
      Survey (SF-36v2), the Work Productivity and Activity Impairments - Specific 
      Health Problem (WPAI) questionnaire, and the 12-item Kansas City Cardiomyopathy 
      Questionnaire (KCCQ-12). The relationship between work impacts (WPAI scores) and 
      HRQoL (SF-36v2 scores) was investigated using multivariable logistic regression 
      and summarized according to cardiac severity using New York Heart Association 
      (NYHA) classes estimated from KCCQ-12 scores. Changes in employment, days of 
      missed work, and long-term disability due to AL amyloidosis were summarized for 
      patients diagnosed in the past 24 months and stratified by NYHA class (Cohort 2). 
      Findings were contextualized using patient interviews (Cohort 3). RESULTS: 
      Work-related impacts, especially reduced productivity, were common among patients 
      with AL amyloidosis. WPAI scores were significantly related to HRQoL (p<0.05 for 
      all models). Among patients with cardiac involvement, the greatest degree of work 
      impacts was observed for those in NYHA class 3 or 4. Changes in employment, 
      missed work, and long-term disability were common among newly diagnosed patients, 
      especially among those in NYHA class 3 or 4. Patient interviews supported the 
      survey findings; patients described absences, reduced productivity at work, and 
      loss of employment due to the disease and its treatment. CONCLUSION: Patients 
      with AL amyloidosis, particularly those with more advanced disease, experience 
      impacts across a range of employment-related outcomes. These findings highlight 
      the need for more effective treatments and interventions which may improve 
      functioning and patient outcomes, while reducing indirect costs associated with 
      the disease.
CI  - (c) 2021 Rizio et al.
FAU - Rizio, Avery A
AU  - Rizio AA
AUID- ORCID: 0000-0003-1881-4523
AD  - QualityMetric Incorporated, LLC, Johnston, RI, USA.
FAU - McCausland, Kristen L
AU  - McCausland KL
AUID- ORCID: 0000-0003-4727-1046
AD  - QualityMetric Incorporated, LLC, Johnston, RI, USA.
FAU - White, Michelle K
AU  - White MK
AUID- ORCID: 0000-0003-2450-7693
AD  - QualityMetric Incorporated, LLC, Johnston, RI, USA.
FAU - Quock, Tiffany P
AU  - Quock TP
AUID- ORCID: 0000-0002-4861-4285
AD  - Prothena Biosciences Inc, South San Francisco, CA, USA.
LA  - eng
PT  - Journal Article
DEP - 20211215
PL  - New Zealand
TA  - Patient Relat Outcome Meas
JT  - Patient related outcome measures
JID - 101551170
PMC - PMC8685766
OTO - NOTNLM
OT  - AL amyloidosis
OT  - employment
OT  - patient-reported outcomes
OT  - work outcomes
COIS- TPQ is an employee and stockholder of Prothena Corporation plc. AAR, KLM, and MKW 
      are employees of QualityMetric Incorporated, LLC, and received funding from 
      Prothena Biosciences Ltd to conduct this research. The authors report no other 
      conflicts of interest in this work.
EDAT- 2021/12/24 06:00
MHDA- 2021/12/24 06:01
PMCR- 2021/12/15
CRDT- 2021/12/23 05:46
PHST- 2021/09/04 00:00 [received]
PHST- 2021/11/17 00:00 [accepted]
PHST- 2021/12/23 05:46 [entrez]
PHST- 2021/12/24 06:00 [pubmed]
PHST- 2021/12/24 06:01 [medline]
PHST- 2021/12/15 00:00 [pmc-release]
AID - 337676 [pii]
AID - 10.2147/PROM.S337676 [doi]
PST - epublish
SO  - Patient Relat Outcome Meas. 2021 Dec 15;12:339-347. doi: 10.2147/PROM.S337676. 
      eCollection 2021.