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Most cancer treatments can cause side effects during or beyond treatment. While some of these side effects will not be bothersome to a person going through treatment, others may be more painful, annoying, or indicative of a problem that requires medical attention.
Previous research has shown that clinicians tend to under-report the severity of symptoms patients may be experiencing from their cancer treatment, and therefore, in both cancer clinical trials and in routine cancer care, there has been a push to collect Patient Reported Outcome Measures (PROMs). You may have read about them previously on OncoBites here — generally PROMs provide information about a patient’s health as perceived by the patients themselves, and are collected through a questionnaire without interpretation by a clinician or anyone else. .
Information collected from PROMs can be beneficial to many groups — they can help hospitals, healthcare services, and clinicians provide effective and timely care, and they can provide scientists and researchers with valuable insights into the benefits and drawbacks of certain treatments.
Despite these benefits, there have been some challenges to the effective implementation of PROMs in cancer treatment. These challenges include addressing the burdens on a patient to fill out a long questionnaire, and the added work for health care professionals who often must both administer the questionnaire, as well as interpret the information. Additionally, with an ever-increasing amount of different PROMs becoming available, it can be difficult to pick the best one. The National Cancer Institute (NCI) is providing a huge amount of resources on their PROMs system called PRO-CTCAE to try and overcome these issues, and regulate how patient care may be modified based on PROM data.
What are the advantages and disadvantages of electronic PROMs?
More recently, electronic PROMs have been suggested as an improvement over traditional, paper-based PROMs. This is where you would fill in a survey or questionnaire on your computer or smartphone, instead of on paper or verbally answering questions posed by a researcher or clinician.
Suggested advantages of electronic PROMs include:
- Increased completion rates. In the case of surveys that are to be completed when the patient is at home, and not in hospital, there is an added benefit that electronic PROMs don’t need to be posted back to the clinician or researcher
- Easy to remind participants to complete surveys
- Less risk of secondary data entry errors and more accurate and complete data
- Questions can be modified based on previous responses, ensuring only the most relevant questions are asked
However, issues that still need to be overcome include:
- Costs involved in setting up the system
- Time required by health care professionals for training and implementation
- Lack of access to technology by respondents
Once these issues have been solved, there are quantitative benefits to the use of electronic PROMs in cancer medicine. A study by Basch and colleagues showed that the use of electronic PROMs improved overall survival in a trial at a large cancer centre.
A case study: implementing electronic PROMs in Texas
A recently published study by Patt and colleagues aimed to study how successfully an electronic PROMs program was implemented across more than 4000 people who were having systemic cancer treatment at one of the 210 Texas Oncology sites.
This study used a tool called Health Tracker, developed by Navigating Cancer. The online tool makes PROMs instantly available to clinicians to enable immediate care of high risk patients. The Health Tracker used a modified version of a well established and validated tool developed by the National Cancer Institute, the PRO-CTCAE. It includes questions about 14 common side-effects of cancer treatment, with a free-text area for patients to add in additional information.
Participants received a weekly reminder via either text message or email to report any symptoms and general well-being. If a symptom was described as severe, it triggered a notification for nursing staff to contact the patient. In the study, 73% of patients completed at least one assessment, and 64% of the total weekly assessments were completed. Over the 10 week study period, completion of surveys declined from 72% to 52%. However, the barriers identified (further electronic reminders and lack of discussion about the electronic PROM system during hospital visits), are already being addressed. The research team is currently working to understand the optimal number of electronic reminders to balance effective PROMs reporting by patients, without causing ‘alert fatigue’, and encouraging clinicians to reinforce use of the tracking tool. Even with these barriers, it was encouraging to see that completion rates were higher than has been reported elsewhere.
Encouragingly, there is a significant amount of ongoing research geared towards identifying ways to overcome barriers in successfully implementing PROMs (whether electronic or not). By overcoming issues around access to technology, and time required by both patients and healthcare professionals, we have the opportunity to generate extremely useful datasets, and ensure that patients receive the personalized, effective care they need.
Edited by Kayla Snare