A Stress Buffering Perspective on the Progression of Alpha-1 Antitrypsin Deficiency

ABSTRACT

This study used the stress buffering perspective to identify social resources, including social network support, having a high quality marriage, and spousal support, that protect against deleterious effects of the progression of Alpha-1 antitrypsin deficiency (AATD) on quality of life. Participants included 130 married adults living with AATD. We measured participants’ quality of life in three ways: perceived stress, life satisfaction, and perceptions of social stigma. The results suggested that disease progression corresponded positively with perceived stress and negatively with life satisfaction. Social network support moderated the association between disease progression and perceived stress and social stigma, and spousal support moderated the association between disease progression and perceived stress and life satisfaction. Marital quality was not a significant moderator. The discussion highlights the stress buffering effects of social support from close others.

Acknowlegment

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We are grateful to the members of the Alpha-1 Research Registry for sharing their perspectives with us.

Notes

1. The Alpha-1 Research Registry consists of 4927 members, and 2288 of them provided e-mail addresses and indicated that they were at least 21 years old and willing to participate in research. Those 2288 members were contacted via e-mail, and the recruitment invitations included an online survey link. Members in the registry were asked to share the survey link and their registry identification code with their spouse, so that the research team could solicit and match their spouses’ responses.

2. We compared the sociodemographics of the sample herein, married registry members whose spouses did not complete the survey (i.e., non-matched), to married registry members whose spouses did complete the survey (i.e., matched; N = 133; Smith et al., 2018). The samples were similar in age (M_unmatched = 53.98, SD = 13.48 vs. M_matched = 53, SD = 13.23), independent sample t (394) = 0.69, p = .49. The samples had similar levels of self-identification as white (97% vs. 96%) and reported similar levels of health insurance coverage (97% vs. 97%). The samples had similar levels of emergency room visits (16% vs. 15%) and hospitalization (10% vs. 9%). Regarding treatment, the samples reported similar levels of supplemental oxygen (23% vs. 22%) and lung transplants (0% vs. 0%). The non-matched registry members had lower reports of augmentation therapy (29% in the non-matched sample vs. 35% in the matched sample), but the difference was not statistically significant, χ² (261) = 0.87, p =.35, Cramer’s V = .06. The non-matched registry members were more to be female (69% in the non-matched vs. 59% in the matched sample), but the difference was not statistically significant, χ² (261) = 3.19, p =.07, Cramer’s V = .11.

3. We excluded five participants who indicated that they were the spouse because the differences between members and spouses in their perceptions of living with AATD were salient (Smith et al., 2018).

4. We compared the two samples’ reports of spousal support and marital quality. The non-matched sample reported a slightly lower level of spousal support (M = 3.68, SD = 1.04) than matched sample (M = 3.74, SD = 1.06), although the difference is not statistically significant, t (261) = −0.46, p = .64, d = −0.06. The non-matched sample had lower marital quality (M = 3.74, SD = 0.64) than matched sample (M = 3.89, SD = 0.64), and this difference is marginally significant, t (261) = −1.90, p = .06, d = −0.23.

5. Two items dropped from the perceived stress scale included “felt that things were going your way” and “felt confident about your ability to handle personal problems.” Two items removed from the life satisfaction scale included “I mostly feel strong and fit” and “I experience nervousness, irritability, anxiety, tension, or restlessness.” One item eliminated from the spousal support measure was “telling you that you are still a good person even when you have a problem.”

6. The three items that were dropped due to significant number of missing data were “talked to about work-related decisions (e.g., dealing with a coworker or boss),” “helped you to look after your children,” and “taken you to get resources (e.g., driving you to get medication)”. For those three items, the percentages of the missing data were 18.5% (n = 24), 61.5% (n = 80), and 16.2% (n = 21), respectively.

7. Given the small sample size, we did not adjust for multiple testing. As a limitation, the findings are prone to Type I error because they are not controlled for the false discovery rate.

Additional information

Funding

Research reported in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number R21HG007111.