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Pectus patient information website has improved access to care and patient reported outcomes
Theofano Tikka1, Joanne Webb1, Paula Agostini1
1Department of Thoracic Surgery, Heart of England NHS Foundation Trust, Bordesley Green East, Birmingham, UK.
Insights
A patient information website for pectus deformities improved access to specialized care and patient satisfaction with surgery. This resource significantly increased patient engagement and positive surgical outcomes, despite minor complications.
Area of Science:
- Congenital disorders
- Medical informatics
- Patient education
Background:
- Pectus deformities represent the most common congenital disorder, yet awareness among primary care physicians and the public is notably low.
- NHS commissioning bodies are considering defunding pectus surgery due to perceived insufficient evidence of benefit.
Purpose of the Study:
- To evaluate the impact of a dedicated patient information website on referral patterns, surgical activity, and patient-reported outcomes for pectus deformities.
- To assess the effectiveness of online resources in improving patient access to specialized surgical services.
Main Methods:
- Development and implementation of an innovative patient information website (www.pectus.co.uk) detailing pectus deformities, management, and surgical advice.
- Analysis of referral patterns and case numbers before and after the website's introduction in 2010.
- Assessment of postoperative patient satisfaction using the Brompton's single step questionnaire (SSQ).
Main Results:
- The website experienced substantial traffic, with thousands of hits and numerous patient contacts and email inquiries, leading to increased surgical assessments and procedures.
- Eighty-four percent of patients who used the website prior to surgery found it beneficial. While not statistically significant, website users reported higher satisfaction and were more likely to opt for surgery again.
- Patients who accessed the website reported similar or higher satisfaction with outcomes, despite experiencing more postoperative complications. Overall satisfaction scores did not differ significantly between website users and non-users.
Conclusions:
- The introduction of a patient information website has demonstrably enhanced access to specialized pectus services.
- Patients utilizing the website reported high levels of satisfaction with their surgical outcomes, indicating the value of accessible online health information.
Background:
Pectus 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.
Methods:
We 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).
Results:
The 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.
Conclusions:
The introduction of a pectus patient information website has significantly improved access to specialised services. Patients are overall highly satisfied with the surgical outcomes.
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