Background: Psychosocial outcomes data come primarily from the first few years post liver donation and are based largely on generic quality of life measures that are insensitive to donation-related issues. We examined donors' perceptions of the consequences of donation on their well-being in the long-term postdonation.

Methods: Across the 9 A2ALL centers, 772 persons donating in 2002-09 were eligible for phone surveys of donation-specific physical health, socioeconomic and emotional concerns. Differences by demographic (gender, age, ethnicity) and donation characteristics (e.g., donor related v. unrelated to recipient) were examined in univariate and multivariable regression models.

Results: 516 donors (67%) participated (M=6 yr, SD=2 postdonation). With respect to health, 15% reported current donation-related medical problems, 21% had physical activity limitations due to donation, and 17-31% were worried about aspects of current/future health. Among socioeconomic concerns, 15% had financial burden due to donation costs, 7% changed/lost jobs due to donation, 7% had reduced income due to donation and 11% had trouble maintaining health/life insurance. On emotional well-being, 43% reported at least moderate levels of personal growth due to donation, 13-88% reported positive feelings about themselves due to donation, but 9% said they would not make the same decision to donate again. Men were more likely to report activity limitations, health worry, less personal growth, and that they would not donate again (p's<.05). Ethnic minorities (v. non-Hispanic Whites) were more likely to report financial burden due to donation, but reported more personal growth. Younger donors were more likely to change/lose jobs due to donation and have trouble maintaining insurance. Relationship to the recipient and time since donation were not related to any concerns, but donors whose recipients had died were more likely to report health worry and activity limitations. All associations remained significant in regression models when effects of the other demographic/donation factors were controlled.

Conclusions: Even many years postdonation, substantial percentages of donors report adverse physical and socioeconomic effects of donation, but positive emotional effects as well. Clinical follow-up should monitor donor concerns and provide intervention or referrals for care. Some donor subgroups (e.g., those whose recipient died) may warrant heightened surveillance.

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