Relationship between individual and family characteristics and psychosocial factors in persons with familial pancreatic cancer.

Underhill M1, Hong F1, Lawrence J2, Blonquist T1, Syngal S1,3.

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Abstract

OBJECTIVE:

Describe relationships between self-reported personal demographics or familial characteristics and psychosocial outcomes (PROMIS® Global Health, Impact of Event Scale-R (pancreatic cancer risk related distress), cancer risk perception, and cancer worry) in participants with inherited or familial pancreatic cancer risk.

METHODS:

A multi-site cross-sectional survey of adults with elevated pancreatic cancer risk based on family history. All variables were summarized with descriptive statistics. T-test, Chi-Square/Fisher's exact test were used to assess univariate associations and backward model selection was used in multivariable analysis.

RESULTS:

Respondents (N=132) reported moderate to high frequency of cancer worry and 59.3% perceived a 50% or more perceived lifetime risk for pancreatic cancer, which far exceeds objective risk estimates. Cancer worry was associated with female gender (p=0.03) and pancreatic cancer risk specific distress (p=0.05). Higher risk perception was associated with having a high-school education or less (p=0.001), higher distress (p=0.02) and cancer worry (p=0.008) and family cancer death experience (p=0.02). Higher distress was associated with experience as a caregiver to a seriously ill family member in the past 5 years (p=0.006).

CONCLUSIONS:

Individuals with inherited or familial pancreatic cancer risk experience cancer worry, distress, and have increased risk perception, particularly in the period following caring for a loved one with cancer. Routine evaluation of distress in this setting, as well as the development of supportive care resources, will help support patients living with risk for pancreatic cancer.