Patient Registry Cuts Rates of Post-Splenectomy Complications

An Australian study found patients were better informed and more empowered when they signed up for a national registry of spleen disease patients.

Allen Cheng, MB BS, FRACP, MPH, MBiostat, PhD

Patients who joined a national registry of spleen disease patients had a much lower risk of overwhelming post-splenectomy infection (OPSI) according to a new Australian study.

The research suggests that increased patient awareness and a robust patient-education strategy can be critical in preventing the often-deadly complications of splenectomy.

Researchers from Monash University, the National University of Australia, and the state of Victoria, collaborated on a retrospective study examining patients who signed up for the Spleen Australia registry between 2003 and 2014. The researchers analyzed rates of infection with encapsulated organisms, such as Streptococcus pneumoniae, Haemophilus influenzae type B (Hib) and Neisseria meningitidis, comparing pre- and post-registration infection rates. Those data were also cross-referenced with a state database tracking Hib, invasive pneumococcal disease (IPD), and invasive meningococcal disease (IMD).

Among the 3221 people on the registry, there were 27 cases of IPD and 1 case of IMD during the time period covered by the study. There were no cases of Hib during that time period. When researchers compared pre- and post-registration rates, they found a 69% drop in infection rates once people had registered with Spleen Australia (150 cases of IPD/IMD infection per 100,000 prior to registration; 36 cases per 100,000 patients after registration).

Allen Cheng, MB BS, FRACP, MPH, MBiostat, PhD, a professor of infectious disease epidemiology at Monash University and the study’s corresponding author, said patient registries aren’t unique, but he said Spleen Australia takes a more proactive approach toward educating patients and physicians and regularly updates its recommendations for prevention tactics and strategies.

“There are plenty of registries that aim to improve the quality of health care, and many support groups for patients but I think this is a different model for health promotion that is focused on patients,” Dr. Cheng told Contagion®. “I suspect that asplenia is an unusual condition in that most patients feel very well (and hence don't need to see doctors frequently) and the interventions that prevent infection—antibiotics, vaccines—are relatively simple.”

Dr. Cheng said the education component is particularly valuable because a physician might rarely see a patient with asplenia and therefore would benefit from guidance regarding the proper vaccine regimens.

“[Once they register] patients are more aware of the issues involved and are then empowered to adhere to preventative measures, and providers know what needs to be done and are reminded to review antibiotics/vaccines,” he said.

The study has several limitations. In addition to the relatively small sample size, the researchers did not know the vaccination status of a given patient; all they had was data from a previous survey in which patients were asked to self-report whether they had complied with vaccination protocols. In that survey, 79% of respondents who had had splenectomy procedures more than 5 years ago said they had received a booster vaccine.

In a commentary published in the same journal as the study, Clinical Infectious Diseases, Antonio Di Sabatino, MD, of the University of Pavia, in Italy, and colleagues, said the study highlights the importance of patient and physician education, as well as the role registries can play. But he said a number of key questions still need to be answered.

“To conclude, future studies should aim at investigating prospectively the effectiveness of a registry or other interventional measures in increasing vaccination coverage and decreasing OPSI-related mortality,” Dr. Di Sabatino and colleagues wrote.