B. J. Peipert1, S. Goswami1, S. E. Yount2,3, C. Sturgeon1 1Northwestern University Feinberg School Of Medicine,Surgery,Chicago, IL, USA 2Northwestern University Feinberg School Of Medicine,Medical Social Sciences,Chicago, IL, USA 3Northwestern University Feinberg School Of Medicine,Psychiatry And Behavioral Sciences,Chicago, IL, USA
Introduction: Health-related quality of life (HRQOL) and financial burden among patients with multiple endocrine neoplasia type 1 (MEN-1) is poorly described. It is not known how the financial burden attributed to treatment and disease influences HRQOL in this population. We hypothesized that financial burden attributable to MEN-1 is associated with worse patient-reported outcomes (PROs) reflecting lower HRQOL.
Methods: Adults (≥18 years) recruited from an MEN-1 support group (n=174) completed an online survey that included questions regarding demographics, clinical characteristics, medical/surgical treatment, and various aspects of financial burden. PROMIS-29 was used to assess HRQOL. PROMIS-29 scores across 7 domains (physical function, fatigue, pain interference, anxiety, depression, sleep disturbance, social functioning) were converted to T Scores and compared to normative data for the United States (US) population using a one-sample T-Test. Data are presented as mean T scores ± standard deviation. Subgroup analysis was conducted using Mann-Whitney U for categorical variables and Pearson coefficients for continuous variables. Holms-Bonferroni Sequential Correction was used to control for multiple comparisons.
Results: Eighty-one percent of respondents reported financial burden associated with MEN-1. Respondents reported using up their savings (39%), being contacted by a collection agency (35%), borrowing money (27%), reaching their maximum credit limit (17%), taking out a new loan/mortgage (14%) or declaring bankruptcy (6%) due to the financial burden of MEN-1. Respondents who reported any financial burden due to MEN-1 had worse anxiety (62.9±9.6 vs 53.2±9.4, p<0.001), depression (58.7±10.3 vs 51.2±13.2, p<0.001), fatigue (62.9±10.2 vs 51.2±13.2, p<0.001), pain interference (57.2±11.0 vs 48.7±8.7, p<0.001), physical function (43.0±9.1 vs 52.2±7.6, p<0.001), sleep disturbance (58.3±8.6 vs 52.6±9.4, p<0.01) and social functioning (43.0±9.5 vs 53.2±11.5, p<0.001). Lower PRO scores were significantly associated with greater financial burden (r=0.34-0.52, p<0.001) and the number of negative financial events (r=0.34-0.45, p<0.001) across all domains, which was also true of respondents who were currently unemployed (14%), disabled (13%) or had a history of extended unemployment (37%) (p<0.05). An annual income <$50,000 (34%) was associated with worse anxiety, depression, pain, physical functioning, and social functioning (p<0.05). Monthly cost of prescription medication >$100 was associated with worse PROs across all domains (p<0.05). Skipping medications due to cost (19%) was associated with worse physical functioning and sleep disturbance (p<0.01).
Conclusions: This is the first PRO study to link worse HRQOL to financial burden attributed to the management of MEN-1. The number of negative financial events, unemployment, disability, monthly cost of prescription medicines, and low income were all associated with worse PRO scores in adults with MEN-1.