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JNCI Journal of the National Cancer Institute logoLink to JNCI Journal of the National Cancer Institute
editorial
. 2021 May 31;113(11):1442–1443. doi: 10.1093/jnci/djab101

Online Therapy for Fear of Cancer Recurrence: Is It the Complete Answer?

Phyllis Butow 1,
PMCID: PMC8562950  PMID: 34057468

Globally, the number of people surviving a cancer diagnosis is growing. In 2018, there were approximately 43.8 million cancer survivors diagnosed within the previous 5 years (1). Cancer survivors face diverse, long-lasting physical and psychological sequalae of their disease. However, the most commonly reported unmet need of cancer survivors is for help with fear of cancer recurrence (FOR) (2), defined as “fear, worry or concern relating to the possibility that cancer will come back or progress” (3). Thus, the article in this issue of the Journal by Wagner and colleagues (4), reporting results from the FoRtitude randomized clinical trial of intervention elements targeting FOR, is welcome.

FOR is experienced by patients with curable disease fearing recurrence, chronic disease fearing relapse, and advanced disease fearing further progression. Most cancer survivors experience at least mild FOR for some years after diagnosis. About half of cancer survivors report moderate to high levels of FOR (5), and about 0%-15% (on average 7%) of patients reported severe and highly disabling FOR (5).

At the core of FOR is existential threat, including fear of suffering, being a burden on the family, missing key events, and ceasing to exist (6). Although FOR is a normal and understandable response to the uncertainty and threat associated with a cancer diagnosis, people with severe or clinically significant FOR report highly distressing experiences, including constant and intrusive thoughts about cancer returning or progressing; clinically significant distress; impairment in daily function; and an inability to make future plans in case cancer returns (3). Without intervention, FOR does not always diminish over time, particularly in those with severe FOR (5,7).

Effective interventions for FOR are available. A meta-analysis of 23 controlled trials found traditional cognitive-behavioral therapy (CBT) and contemporary CBT were effective immediately post-intervention (Hedges’ g =0.33) and at follow-up (g =0.30) (8), although contemporary CBT (g = 0.42) was superior to traditional CBT (g = 0.24). Conventional CBT challenges excessive risk estimates and worries, and contemporary CBT (involving metacognitive strategies) challenges the value of worry and teaches acceptance of and nonengagement with worries. However, most evaluated interventions in this meta-analysis were face to face, in individual or group format, led by skilled psycho-oncology staff. This model of care is neither scalable nor sustainable and is inaccessible to those who live in rural and remote communities. Furthermore, distressed cancer patients often decline professional psychological help (9,10), and many prefer self-management (10).

Internet-delivered interventions offer a solution, and there is growing evidence for their efficacy in the cancer context (11,12). Smith et al. (13) argued that internet-based interventions may be particularly applicable to FOR, because younger age is associated with higher FOR (5) and online self-management acceptability (14). However, in the meta-analysis of FOR interventions discussed above (8), only 3 trials of internet or telephone interventions were identified, and these were less effective (g =0.10) than those delivered face to face (g =0.38). We need to understand better how to design the most effective online interventions for FOR, how to best engage cancer survivors when using them, and what model (totally self-managed or blended online and face-to-face care) will be most effective. To achieve these goals, novel research approaches are required.

Wagner and colleagues (4) have tackled this challenge with an innovative research design called the Multiphase Optimization Strategy (MOST) (15,16), a framework for optimizing and evaluating multicomponent behavioral and biobehavioral interventions. MOST is comprised of 4 research phases, including an optimization phase that involves selecting the components and component levels that make up the intervention to optimize outcomes, via a randomized, classic full factorial trial (prior to a final definitive randomized controlled trial).

Using this approach, Wagner et al. (4) evaluated 16 combinations of: 1) 3 different CBT strategies targeting FOR (relaxation, cognitive restructuring and worry practice—a mix of traditional and contemporary CBT approaches) vs an attention control (online general health management advice); and 2) receipt of telephone-based motivational interviewing (telecoaching) to increase adherence or not (17). Thus, strategies to optimize FOR outcomes and engagement with the online intervention were assessed. The components were included within the authors’ FoRtitude intervention (18), which comprises 2 didactic lessons and an interactive tool to facilitate practice over 4 weeks.

Women with stage 0-III breast cancer (n = 196) who had completed their primary breast cancer treatment 1-10 years previously and who had the internet skills, a mobile phone, and adequate English were recruited to the study (4). This sample, because of efficiencies in the research design, was adequate to detect a medium effect size for each of the intervention components.

Among those randomly assigned, 186 (94.9%) logged onto the FoRtitude site at least once. Across the 3 CBT approaches, 65.7% (worry practice), 68.7% (cognitive restructuring), and 91.8% (relaxation) of participants completed at least 1 lesson respectively, and 39.4% (worry practice), 49.5% (cognitive restructuring), and 65.3% (relaxation) completed both lessons and used the tool (full adherence) (4), which compares well with other similar evaluations. For example, Beatty and colleagues (19) reported that 60% of participants in an online supportive care intervention for cancer survivors met their engagement target of 4 or more modules completed. Telecoaching was associated with lower attrition and greater website use, which is important given that in a recent survey, a high proportion of cancer survivors reported preferring in-person counseling to internet-based therapies for managing mental health problems (20).

In the FoRtitude trial, FOR decreased statistically significantly from baseline to postintervention (P < .001), however, there was no difference in the magnitude of reduction in FOR between CBT and attention control conditions (4). Thus, the study failed to provide evidence of the efficacy of any of the FOR intervention components. Given that CBT (both traditional and contemporary) approaches have been proven effective in face-to-face approaches, this suggests that they failed to translate effectively into the online context. The authors posit that perhaps the intensity of the intervention (2 didactic lessons and a tool to use over 4 weeks) was inadequate. It is also possible that an entirely self-directed approach will not be effective in this population. Another large trial of a longer self-managed online CBT (the CAREST trial) (21) comprising 6 modules delivered over 12 weeks also reported negative results. Whereas a recent evaluation of a blended model (the SWORD intervention), comprised of 5 face-to-face sessions combined with online exercises, was shown to be effective with enduring impact (22).

This study is a step forward, however, there is a clear need for further research into how to effectively employ online techniques, without assuming they will be the complete answer, to address mental health care in the cancer context.

Funding

None.

Notes

Role of the funder: Not applicable.

Disclosures: The author has no disclosures.

Author contributions: Writing—original draft: PB; writing-review and editing: PB.

Data Availability

There are no data presented in this paper.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

There are no data presented in this paper.


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