Timing Crucial: Self-management Website for Cancer Survivors

Helen Leask

January 03, 2020

A website designed for cancer survivor self-management did not appear to provide much benefit to the patients it aimed to help.

The eHealth application, known as Oncokompas, was tested among 625 cancer survivors at 14 Dutch hospitals in a nonblinded, randomized trial.

The results show that access to the website did not improve the knowledge, skills, or confidence of the patients when compared to usual care over 6 months. Only secondary outcomes of quality of life and tumor-specific symptom burden were improved, report the authors.

The study was published on December 11 in the Lancet Oncology.

However, owing to its size, the study is being hailed as a "meaningful" contribution to digital medicine. This was "possibly the largest randomised controlled trial of self-management interventions reported in the literature to date," comments Afaf Girgis, PhD, University of New South Wales, Australia, in an accompanying editorial.

It "contributes substantial new knowledge on the reach and usage of self-management by a broader population of cancer survivors," she added, noting that to date, most studies of survivorship self-management have focused on breast cancer.

"It was a well-conducted study, and I think it's important to publish negative trials," said Patricia Ganz, MD, distinguished professor of health policy and management, the Fielding School of Public Health, University of California, Los Angeles, who was approached for comment. "One trial doesn't prove or disprove something.... It just needs to be further evaluated."

Study Details

The study was conducted by a team of 29 researchers headed by Anja van der Hout, a PhD candidate at the Amsterdam Public Health Research Institute.

The team describes Oncokompas as "a web-based eHealth application" that "aims to support cancer survivors in self-management." It is considered a medical device by Dutch and European regulators. When the patient keys in information on symptoms and health-related quality of life (HRQOL), the system provides feedback on the scores and offers a personalized overview of supportive-care options. Patients can dive deeper into topics that are important to them.

The primary endpoint of the study was "patient activation," assessed by a 13-item self-report that quantified the patient's knowledge, skills, and confidence for self-management after using Oncokompasfor for 6 months. Secondary outcomes included multidomain HRQOL and supportive-care needs.

Participants were randomized to the intervention group, which had immediate access to Oncokompas (n = 320), or to the control group, which had access to Oncokompas after a 6-month delay (n = 305).

After using Oncokompas for 6 months, patients in the two groups were similar on most measures, including patient activation, mental adjustment to cancer, supportive-care needs, and self-efficacy. The only clinically relevant differences were seen in HRQOL regarding trismus in head-and-neck cancer survivors and weight for colorectal-cancer survivors. Overall usage was low; there was an average of four logins over 6 months. Only 78% of the intervention group activated their accounts at all.

Such results are not uncommon in this field, said Ganz, who for years has worked on cancer survivorship. "Here they have this nice platform, but a lot of people didn't even go on it, and then the utilization rate was low," she said. "That's actually been found with a number of Web-based platforms and apps: engagement with the tool is often challenging."

Self-management apps are now available for most diseases, and developers are increasingly seeking official approval. For example, on July 31, 2019, the FDA granted regulatory status as a class II medical device to Oleena, a self-management app for cancer patients that keeps in touch with the care team.

Earlier Successful Pilot Study

The authors of the Oncokompas clinical trial compared their disappointing results with those of an earlier, successful pilot study. They speculated that because of the longer time since diagnosis in the randomized, controlled trial (27 months vs 12 months in the pilot), the patients in the large trial had already increased their knowledge, skills, and confidence. The researchers concluded that offering Oncokompas to cancer patients at an earlier stage of their disease "might therefore be beneficial."

Ganz agreed: "This tool may not be dead; they may just have given it to the wrong population of patients. Doing it early on is the right time, when patients are really trying to figure out how they're going to navigate the post-treatment period."

By the time 2 or 3 years have passed since their diagnosis, patients have gotten used to how they are feeling and say, "I'm just going to live with it," she commented. "Many people are just tired of being involved in the healthcare system," she added.

The platform could reach its true potential for cancers such as those of the head and neck, in which symptoms worsen over time, Ganz said. She cited the HRQOL data for head-and-neck cancer in the study.

She said that targeting digital tools such as Oncokompas to the right patient is in harmony with the current risk-stratified approach to cancer-survivorship care: "The intensity of the treatment and toxicity would dictate how intensive the follow-up will be, and these kinds of interventions are a very good adjunct for those kinds of patients. It's not a one-size-fits-all approach ― it has to be identified who's most likely to benefit from a tool like this."

It is expected that there will be 20.3 million cancer survivors in the United States by 2026. Both Ganz and Girgis emphasized the need to explore alternative models of follow-up care for overburdened healthcare systems.

"Because of the aging of the population, there will not be enough oncologists to meet the need if all the people with cancer still stay in those practices," Ganz commented. "Do they need to go back and see the surgeon forever? Do they need to see the oncologist forever?"

Several coauthors have reported relationships with industry, a full listing of which is included in the original article. Girgis has disclosed no relevant financial relationships.

Lancet Oncol. Published online December 11, 2019. Abstract, Editorial

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