Abstract
<jats:p>Introduction Lynch syndrome (LS) is an autosomal dominant inherited cancer predisposition syndrome, and the most common cause of inherited colorectal cancers. We conducted a study surveying LS carriers to identify the challenges they face in managing their condition. Based on these insights, we co-developed an app to support LS carriers in staying up-to-date with their management and evaluated if digital solutions could improve care. In this commentary, we explain the rationale behind the app, describe the process of co-development, highlight key findings from the app’s analytics, and outline future directions for the app. Background Although historically considered a rare disease, researchers estimate that LS affects 1 in 400 people, and only 5% of carriers are diagnosed and aware that they have the condition. It requires lifelong surveillance as the risk of cancers including colorectal, endometrial, prostate, and ovarian cancer can be higher than the general population by an average of 56%, 48%, 24%, and 13%, respectively. The UK Cancer Genetics Group (UKCGG) has published management guidelines that recommend, 2-yearly bowel colonoscopy screening, Helicobacter pylori (H. pylori) testing, gynaecological reviews for women, aspirin chemoprevention, genetic testing for at-risk family members, and healthy lifestyle advice. The Lord Darzi investigation highlighted that the current NHS App had fallen short of its potential and emphasised the need for technological advancements that would create a “predict and prevent” model for healthcare in England. There is an increased disease burden of long-term conditions and an expectation for general practitioners (GPs) to oversee management. However, the current GP shortage, along with the closing of GP practices in areas of higher deprivation, means that the NHS, at present, is not adequately equipped to meet these needs, and the burden of condition management can often fall upon LS carriers. Digital solutions, like patient-facing self-management apps, may encourage patients to keep up-to-date with their management, and have been successful in other disease areas. For example, a smartphone app for diabetes type II was shown to improve medication adherence amongst and medication non-adherent Asian population, with >80% stating the app made them more adherent. Furthermore, a self-management score has been produced to assess self-management behaviour in diabetes patients, which has become a widely used tool by patients and healthcare professionals (HCPs) to help manage their condition and improve communication between HCPs and patients. A mobile app specifically for LS management had not previously been launched in the UK. 95% of UK adults own smartphones, and their mobility means that health apps may be used in any location, at any time, and makes access to healthcare very convenient for a large proportion of society. Additionally, digital healthcare has the potential to minimize ethnic and racial disparities in access to healthcare, when black and ethnic minorities are prioritised for inclusion in design processes. However, digital illiteracy and a lack of trust in IT remain challenges for the uptake of healthcare apps in the wider population, particularly in older individuals. The combined use of healthcare professional visits alongside health apps, as well as access to digital champions who can help and empower individuals using technology have proven to be successful in improving adoption of digital technology.</jats:p>