A review, evaluation and content mapping study of Australian patient-facing online pancreatobiliary cancer resources.

PURPOSE: Access to appropriate supportive care resources and services is essential to improve outcomes for cancer survivors. This study aimed to identify, evaluate and content-map Australian online supportive care resources and services for people living with pancreatobiliary cancers.

METHODS

A structured online search was conducted of Australian cancer organisations to identify pancreatobiliary cancer resources and services. Resources and service sites were evaluated (cost, readability, active engagement, diversity (age, sex, gender and culture), consumer voice) and content mapped against published categories of informational needs.

RESULTS

A total of 180 unique online resources and seven service webpages were identified from 19 Australian cancer organisations. On evaluation, 99% resources and services were free to access, 44% of resources were deemed readable (year 8 reading level or below), 24% of resources demonstrated diversity and 24% of all resources and service sites included a cancer survivor voice. Information gaps were identified with topic categories such as body image and sexuality, rehabilitation, prognosis, and interpersonal and social issues.

CONCLUSIONS

There is room for improvement across existing online resources. Co-design of an online resource hub, a centralised collection of accessible and appropriate resources is warranted to maximise support and improve the health outcomes of pancreatobiliary cancers survivors and caregivers. Australian pancreatobiliary cancer survivors and caregivers would benefit from better resources that adhere to best practice standards of online support. Future research should explore ways to reduce the information seeking burden and increase the quality of information.