Abstract
BackgroundPectus is the most common congenital disorder. Awareness amongst primary care physicians and the general public is poor. NHS commissioning bodies plan to withdraw funding for this surgery because they deem a lack of sufficient evidence of benefit. The purpose of this study is to assess the effects of introducing a patient information website on referral and activity patterns and on patients reported outcomes.MethodsWe produced an innovative information website, www.pectus.co.uk, accessible to the general public, providing information about pectus deformities; management options and advice about surgery. Referral patterns and number of cases where studied before and after the introduction of the website in 2010. Patients’ satisfaction post-op was assessed using the Brompton’s single step questionnaire (SSQ).ResultsThe website had considerable traffic with 2179 hits in 2012, 4983 in 2013 and 7416 in 2014. This has led to 1421 contacts and 372 email enquiries. These emails have resulted in an increased number of patients who have been assessed and go on to have surgery. We asked 59 pectus excavatum patients who were operated from 2008 to 2014 to complete the SSQ. We received 32 replies. Eighty-four percent (16/19) of patients who visited the website and then underwent surgery, found the website useful. All patients scored satisfactorily in SSQ. Even though those who visited the website tended to be more satisfied with the surgical outcomes this did not reach statistical significance. This group of patients said that would have the operation again given the option compared to 76.9 % of the group who did not visit the website before surgery (p=0.031). Despite the fact that patients who visited the website experienced more post-operative complications were equally or more satisfied with post-operative outcomes. The overall SSQ obtainable score was not different for the two subgroups, being more widespread in the group that did not visit the website.ConclusionsThe introduction of a pectus patient information website has significantly improved access to specialised services. Patients are overall highly satisfied with the surgical outcomes.
Highlights
Pectus is the most common congenital disorder
Our regional thoracic surgery unit developed a pectus information website, accessible to the general public that provides information about pectus deformities, management options, what is involved in having surgery and its benefits and risks
The website had considerable traffic with 2179 hits in 2012, 4983 in 2013 and 7416 in 2014 with an average session duration of 3 min 18 s. This has led to 1421 contacts and 372 email enquiries
Summary
Awareness amongst primary care physicians and the general public is poor. NHS commissioning bodies plan to withdraw funding for this surgery because they deem a lack of sufficient evidence of benefit. Pectus deformities affect one in every 400 children and young adults. The negative psychosocial and physiological effects of pectus are widely accepted. Adolescents with pectus deformities tend to develop negative self-cognition as a results of health over-attention by themselves and their close relatives and friends. Altered body self-awareness can potentially results in behavioural problems, and build-up of negative emotions. The inter-link between psychosocial and physiological health can lead to an exacerbation of disease status in this group of young patients [2]
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
