None listed
Conditions
Brief summary
This study is aiming to evaluate the efficacy of an interactive online portal, iCare, in improving the health and wellbeing of people living with complex cancers, and their informal carers. Who is it for? You may be eligible for this study if you are an adult who has been diagnosed with an upper gastrointestinal (GI) cancer in the past 3 months, or a carer who is looking after someone who has been diagnosed with an upper GI cancer. Study details Patients and carers will be provided access to the online iCare platform as often as they would like over a three month period. The platform will provide information on the patient journey, support and resources with a facility to identify and record medical symptoms. All participants will be asked to complete surveys at baseline, 3-months and 6-months post-recruitment. It is hoped that findings from this study will help determine the utility of the iCare platform in supporting the emotional needs of complex cancer patients and their carers.
Interventions
The iCare program comprises two system pathways (patient or carer). The relevant pathway will be identified at login stage. Similar to our previous work, the pathways will provide information, support and resources with a facility to identify and record medical symptoms.
Participants will have access to an interactive program, organised around 10 modules, with versions for patients diagnosed with upper GI cancers and their carers. Each time a patient accesses the portal, they provide informati
The iCare program comprises two system pathways (patient or carer). The relevant pathway will be identified at login stage. Similar to our previous work, the pathways will provide information, support and resources with a facility to identify and record medical symptoms. Participants will have access to an interactive program, organised around 10 modules, with versions for patients diagnosed with upper GI cancers and their carers. Each time a patient accesses the portal, they provide information on their current physical needs and an algorithm directs them to relevant information on the website. iCare provides a system for triaging patient symptoms, with patients receiving recommended management strategies and carers alerted to patient symptoms and recommendations for follow up. Following on from our previous research, participants reporting, and carers observing, severe symptoms, will receive tailored information about when to seek medical assistance. The modules in iCare are organised into broad topic such as cancer information, nutrition, exercise, wellbeing, survivorship etc. These topics have been developed in our previous research with patient and carer consumers. Within each module is a compilation of relevant existing resources provided by evidence-based organisations; including; videos, podcasts and written information. The program is fully flexible allowing participants to seek information from the modules most relevant to their needs over the 3-month intervention period. Participants can access the modules as many times as they like. There is no prescribed amount of time needed to use each module, participants can spend the amount of time desired locating resources and reading information to meet their needs. Using embedded tracking software, we will observe natural use of the program over 3-months by collecting frequent and number of logins and duration of use. Based on the findings of our previous work, a medical symptom tracking calendar and carer emotional states, will be incorporated to enhance carers’ ability to monitor patient medical symptoms and their own emotional response. Patients and carers will receive an email message each week that will direct them to resources available within the portal; this approach has been successfully trialled by our team.
Sponsors
Deakin University
Study design
Allocation
Randomised controlled trial
Intervention model
Factorial
Primary purpose
Educational / counselling / training
Masking
Blinded (masking used) (Investigator, Outcomes Assessor)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Inclusion criteria: • aged 18+ years old • people newly diagnosed with upper GI cancers within previous 3 months (pancreas, liver, stomach, bile ducts and oesophagus cancers) • treated with a six month prognosis • registered with the Upper Gastro-Intestinal Cancer Registry • carers of someone with these cancers • able to speak and read English • own a web-based device, such as a smartphone, Android, iPad, desktop computer or other internet connected device Carers will be identified through eligible patients as the person most involved in their day-to-day care and medical appointments.
Exclusion criteria
Insufficient English language skills to understand content presented in English.
Outcome results
None listed