Home parenteral nutrition: Does affiliation with a national support and educational organization improve patient outcomes?

Background: For patients receiving home parenteral nutrition (HPN), catheter-related bloodstream infection (CRBSI) and reactive depression may significantly impact quality-of-life. This study evaluated the influence of patient affiliation with a national organization promoting HPN education and peer support on these outcome variables. Methods: Using a case-control design, we compared 2 groups of affiliated patients with nonaffiliated controls, who were matched for diagnosis, HPN duration, sex, and age. Group 1 data were obtained from patients in large HPN medical practice programs. Group 2 data were obtained from patients in small medical practices with a small, number of HPN patients. All participants were evaluated by structured interviews every 6 months over 18 months. Results: In both data collection groups, affiliated patients (A) had significantly higher (mean +/- SD) quality-of-life scores compared with nonaffiliated patients (NA): (Gr 1: A, 19.8 +/- 4.7 versus NA, 17.6 +/- 5.6, p =.05; Gr 2: A, 20.4 +/- 5.2 versus NA, 17.3 +/- 4.8, p =.05). Affiliated patients also had lower depression scores (Gr 1: A, 10.9 +/- 10.4 versus NA, 20.4 +/- 13.6,p =.01; Gr 2: A, 12.5 +/- 9.6 versus NA, 18.5 +/- 10.8, p =.03) and a lower incidence of catheter-related infections (Gr 1: A, 0.10 +/- 0.3 versus NA, 0.60 +/- 0.55, p =.01; Gr 2: A, 0.27 +/- 0.55 versus NA, 0.71 +/- 0.64, p =.02) than nonaffiliated patients. Conclusions: Affiliation with an organization that provides ongoing HPN education and peer support was associated with significantly better HPN outcomes. Alternative explanations are discussed in relation to limitations of the case-control design.