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THE IMPACT OF AL AMYLOIDOSIS ON ABSENTEEISM, REDUCED PRODUCTIVITY, AND JOB LOSS
Author(s): ,
Spencer Guthrie
Affiliations:
Prothena Biosciences Inc,South San Francisco, CA,United States
,
Michelle K White
Affiliations:
Optum,Lincoln, RI,United States
,
Kristen L Mccausland
Affiliations:
Optum,Lincoln, RI,United States
Martha Bayliss
Affiliations:
Optum,Lincoln, RI,United States
(Abstract release date: 05/19/16) EHA Library. Guthrie S. 06/09/16; 133007; E1458
Mr. Spencer Guthrie
Mr. Spencer Guthrie
Contributions
Abstract
Abstract: E1458

Type: Eposter Presentation

Background
Debilitating chronic conditions and their treatments often negatively impact patient’s ability to work, resulting in absenteeism, reduced productivity, and job loss. Light-chain (AL) amyloidosis is a rare disease in which misfolded light chains are deposited in tissues, which may lead to organ failure, disability, and death. Current treatments are known to affect patients’ functioning and well-being, but there is little evidence to date on the impact of AL amyloidosis on patients’ ability to work. 

Aims
To describe the impact of AL amyloidosis on patients’ work using data from qualitative and quantitative research.   

Methods
Data for these analyses were collected from two phases of a broad research program on the experience of patients with AL amyloidosis. First, qualitative in-depth individual telephone interviews were conducted with 10 patients. Results are presented from coded interview transcripts that were analyzed using a grounded theory approach to identify themes. Second, a quantitative online survey including a battery of patient-reported outcome measures was conducted in a separate sample of patients (n=341). The data presented are based on the Work Productivity and Activity Impairment (WPAI) questionnaire for the subset of employed patients, including a single-item measure of the number of hours absent from work due to AL amyloidosis and a multi-item scale assessing overall lost productivity. Wilcoxon-Mann-Whitney tests were used to compare mean WPAI scores by time since diagnosis (< 12 months ago vs. ≥ 12 months ago) among those with cardiac involvement.  

Results
In qualitative interviews, 7 of 10 patients reported that AL amyloidosis impacted their ability to work, manifesting as loss of focus or productivity, absenteeism including extended leaves of absence, and job loss. Patients reported underperforming at work and attributed this to symptoms, treatment side effects, and time required for doctor visits. Most felt their employers were supportive of their health needs; however, in some cases, job loss led to financial difficulties for families and frustration at subsequent changes in household roles. In the quantitative study, 115 patients (38.3%) were currently employed. Of these, the mean age was 56.1, 56% were female, and 10% were non-Caucasian. On average, employed patients reported being absent from work 5 hours per week and a 27.6% reduction in overall work productivity due to AL amyloidosis. Patients with cardiac involvement reported significantly higher absenteeism compared to those without cardiac involvement (mean hours absent per week: 15 vs. 2.5 hours, respectively, p<0.02). Within the subgroup with cardiac involvement, overall lost work productivity for those diagnosed within the past year was twice that of patients with cardiac involvement who were diagnosed more than a year ago (54.4% vs. 25.4%, respectively, p<0.04).  

Conclusion
These results indicate that AL amyloidosis has a significant impact on patients’ work, causing absenteeism, impaired productivity, and job loss. These results highlight additional costs of AL amyloidosis that are not related to medications or procedures, but are borne by patients, their employers, and their families.  Advancements in treatment options for patients with AL amyloidosis and increased attention to patients’ functioning and well-being could potentially minimize these hidden costs.  Study supported by: Prothena Biosciences Inc

Session topic: E-poster

Keyword(s): AL amyloidosis, Quality of life
Abstract: E1458

Type: Eposter Presentation

Background
Debilitating chronic conditions and their treatments often negatively impact patient’s ability to work, resulting in absenteeism, reduced productivity, and job loss. Light-chain (AL) amyloidosis is a rare disease in which misfolded light chains are deposited in tissues, which may lead to organ failure, disability, and death. Current treatments are known to affect patients’ functioning and well-being, but there is little evidence to date on the impact of AL amyloidosis on patients’ ability to work. 

Aims
To describe the impact of AL amyloidosis on patients’ work using data from qualitative and quantitative research.   

Methods
Data for these analyses were collected from two phases of a broad research program on the experience of patients with AL amyloidosis. First, qualitative in-depth individual telephone interviews were conducted with 10 patients. Results are presented from coded interview transcripts that were analyzed using a grounded theory approach to identify themes. Second, a quantitative online survey including a battery of patient-reported outcome measures was conducted in a separate sample of patients (n=341). The data presented are based on the Work Productivity and Activity Impairment (WPAI) questionnaire for the subset of employed patients, including a single-item measure of the number of hours absent from work due to AL amyloidosis and a multi-item scale assessing overall lost productivity. Wilcoxon-Mann-Whitney tests were used to compare mean WPAI scores by time since diagnosis (< 12 months ago vs. ≥ 12 months ago) among those with cardiac involvement.  

Results
In qualitative interviews, 7 of 10 patients reported that AL amyloidosis impacted their ability to work, manifesting as loss of focus or productivity, absenteeism including extended leaves of absence, and job loss. Patients reported underperforming at work and attributed this to symptoms, treatment side effects, and time required for doctor visits. Most felt their employers were supportive of their health needs; however, in some cases, job loss led to financial difficulties for families and frustration at subsequent changes in household roles. In the quantitative study, 115 patients (38.3%) were currently employed. Of these, the mean age was 56.1, 56% were female, and 10% were non-Caucasian. On average, employed patients reported being absent from work 5 hours per week and a 27.6% reduction in overall work productivity due to AL amyloidosis. Patients with cardiac involvement reported significantly higher absenteeism compared to those without cardiac involvement (mean hours absent per week: 15 vs. 2.5 hours, respectively, p<0.02). Within the subgroup with cardiac involvement, overall lost work productivity for those diagnosed within the past year was twice that of patients with cardiac involvement who were diagnosed more than a year ago (54.4% vs. 25.4%, respectively, p<0.04).  

Conclusion
These results indicate that AL amyloidosis has a significant impact on patients’ work, causing absenteeism, impaired productivity, and job loss. These results highlight additional costs of AL amyloidosis that are not related to medications or procedures, but are borne by patients, their employers, and their families.  Advancements in treatment options for patients with AL amyloidosis and increased attention to patients’ functioning and well-being could potentially minimize these hidden costs.  Study supported by: Prothena Biosciences Inc

Session topic: E-poster

Keyword(s): AL amyloidosis, Quality of life

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