Abstract
Background:
Breast cancer survivors may experience persistent cognitive impairment and fatigue after completion of cancer treatment, which negatively impacts their quality of life. Neurofeedback is a novel, non-invasive form of brain training reported to help with symptoms such as pain, fatigue, depression, anxiety, sleep problems, and cognitive decline; however, there is a lack of research exploring its use with cancer survivors.
Objective:
The objective of this study was to describe experiences of neurofeedback and its impact on the lives of post-treatment breast cancer survivors.
Methods:
This article describes the qualitative phase of a prospective pilot feasibility trial of a nonlinear dynamical neurofeedback intervention. Study participants had the option to participate in a semi-structured interview at follow-up. A sample of 12 breast cancer survivor clients participated in interviews 5–10 weeks after the completion of 20 sessions of nonlinear dynamic neurofeedback. This qualitative descriptive study employed thematic analysis of interview transcripts.
Results:
Qualitative analysis revealed two overarching themes of impact and experience and six subthemes: symptom impact, dramatic effect, symptom improvement, enjoyable experience, lack of side effects, and recommend for cancer survivors.
Conclusion:
Results of this qualitative descriptive study suggest that nonlinear dynamical neurofeedback had a dramatic and meaningful positive effect on persistent symptoms experienced by breast cancer survivors, without any negative side effects. Participants in our sample found the neurofeedback sessions to be enjoyable and recommend that they be offered to all cancer patients. Clinical trials with larger sample sizes are needed to corroborate our findings. Establishing clinical effectiveness could encourage adoption of neurofeedback into routine cancer care and health insurance coverage.
Introduction
Cancer survivors report challenges in coping with lifestyle adjustments after their cancer diagnosis and treatment, trying to get back to their previous lifestyle, but finding they have to accept a new normal lifestyle. 1 Breast cancer survivors often experience persistent physical and psychological symptoms after completion of cancer treatment, including cognitive impairment and fatigue that negatively impact their quality of life. 2
Post-cancer cognitive impairment (PCCI) is recognized as one of the most distressing symptoms in cancer survivors, generally manifesting in deficits in attention (focus), recall (memory), language (word finding), executive function (problem solving), and speed of processing; these deficits may often be subtle but have a significant negative effect on quality of life. 3 Cancer-related fatigue (CRF) is a persistent physical, emotional and/or cognitive tiredness that is among the most prevalent and most distressing side effect of cancer and its treatment.4,5 Both PCCI and CRF have historically been underreported by cancer patients and poorly managed by health care providers, as there are few evidence-based interventions to offer cancer survivors.3,6
Existing recommendations for the management of PCCI include cognitive training and rehabilitation, exercise, and mind-body interventions. 7 Management of CRF includes treating contributing factors, physical activity, psychosocial interventions, and consideration of psychostimulants. 6
There are multiple diverse neurofeedback approaches and protocols.
The practitioner connects sensors to the client's scalp, which measure brain activities and transfer them to a computer program (Fig. 1). The computer software responds to the brainwave patterns with positive results when the brainwaves fall within desired limits, and it slows down or stops the video when the brainwaves extend beyond these limits. When brainwaves are too slow or too fast, an individual may feel sluggish or nervous; traditional neurofeedback aims at bringing the brainwaves into a “normal” range by “rewarding” the individual, for example, allowing them to watch a movie without interruptions.

How neurofeedback works: the biofeedback loop (photo: shutterstock_1272933439).
In contrast,
Traditional Linear Versus Nonlinear Dynamical Neurofeedback Approaches a
Adapted from NeurOptimal® Brain Training eBook Version No 3.7 (Zengar Institute, Inc., 2022).
Feedback is provided in the form of slight interruptions in the media stream that prompt the brain to pay attention, which helps a person learn to become relaxed and/or focused by providing real-time information about how their brain is performing. This holistic form of brain training promotes self-regulation, flexibility, and resilience similar to the effects of mind-body therapies such as yoga and meditation, but results may occur more rapidly and efficiently with neurofeedback. 18 Other mindfulness-based programs have demonstrated mixed effects on cognition that may be related to participant motivation. 19
Brain training with the NeurOptimal neurofeedback system does not require any effort on the part of the participant, which may address this limitation of traditional mindfulness-based training. Another advantage of the nonlinear dynamic approach is that the practitioner is not required to diagnose a problem or design a therapeutic protocol, and the NeurOptimal system is user friendly. The nonlinear dynamical approach recognizes that the brain has the capacity to reorganize or rebalance its own brainwave patterns based on the feedback provided to optimize efficiency. 16
This results in the individual feeling calmer and less reactive, with an improved mood and ability to stop negative thought patterns, able to focus easier and to fall asleep faster. These improvements translate to improved cognition and decreased fatigue, including in cancer patients. 20 These differences would make it more feasible to offer nonlinear neurofeedback on a larger scale in a clinical setting such as a cancer survivorship centre.
Evidence from two quantitative systematic reviews that included a total of six unique studies with cancer survivors suggests that neurofeedback is a safe, non-invasive, drug-free complementary therapy that has the potential to ameliorate symptoms such as cognitive problems, fatigue, sleep problems, pain, and depression in cancer survivors; however, further studies are needed.15,21 Specifically, a few studies have examined the qualitative experiences of cancer survivors participating in neurofeedback training sessions. One recent qualitative study explored the experiences of neurofeedback and its impact on quality of life as perceived by a sample of neurofeedback providers (n = 12) and cancer survivor clients (n = 5); participants described neurofeedback as transformational, empowering, healing, comforting, and a way to pay it forward, while also describing challenges related to accessibility and failure of some individuals to respond to the therapy. 22
More qualitative studies are needed to understand the experience of neurofeedback for cancer survivors and its impact on their quality of life. These studies will assist cancer care and primary care providers to decide whether and when to recommend neurofeedback to cancer survivors in their practices.
Purpose
Building on our own incremental program of research exploring the effect of neurofeedback on cognition and fatigue, we added a qualitative component to our most recent pilot feasibility study to better understand the impact of NeurOptimal neurofeedback on symptoms and quality of life in a sample of breast cancer survivors experiencing PCCI and CRF.
Methods
Design and participants
This article describes the qualitative phase of a prospective pilot feasibility trial of a nonlinear dynamic neurofeedback intervention. 20 This phase employed a qualitative descriptive research approach. Study participants had the option to participate in a qualitative interview at follow-up. Of the 16 study participants, 12 (75%) opted to participate in a qualitative interview at follow-up (5–10 weeks post-neurofeedback). Post-treatment breast cancer survivors with cognitive problems were recruited through newspaper notices, and posters/postcards in community/health care settings including the regional cancer clinic. 20
Individuals were considered for this study if they had completed primary cancer treatment (surgery, chemotherapy, and/or radiation treatment) for earlier stage (I–III) cancers and self-reported a moderate to severe level of cognitive impairment (score or 4 or higher on a 10-point scale) and/or CRF. Individuals with advanced cancer or metastases, epilepsy, or dementia (based on self-report) were excluded.
Intervention
This pilot feasibility study used a 10-week wait-list design. Participants served as their own controls and received 20 sessions of NeurOptimal® Version 2.0 neurofeedback delivered over a 10-week period. During each session, the participant is seated in a comfortable reclining chair. The practitioner attaches two sensors to the scalp and three to the ears. The participant listens to music throughout the 33-min session and hears a “static” sound whenever feedback is provided. Outcomes were assessed using validated, self-report scales and neuropsychological tests before, during, and after neurofeedback. The neurofeedback protocol was feasible and resulted in significant decreases in perceived cognitive deficits (FACT-Cognition), fatigue (FACT-Fatigue), sleep (PSQI), and psychological symptoms (BSI-18). Quantitative results were previously published elsewhere. 20
Data collection and analysis
Ethical approval was received from the Queen's University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board. Semi-structured interviews were guided by an interview guide outlining key questions and potential prompts (See Table 2). Consenting participants completed a 30–60-min interview conducted by the primary author. Interviews were transcribed verbatim and verified by the second author. Data analysis was guided by the phases of thematic analysis described by Braun and Clarke. 23
Interview Questions and Potential Probes/Prompts
Trustworthiness in the data analysis was ensured by having two researchers independently conduct the data coding and participate in peer review of findings. Similar codes were combined to create subthemes using emerging, process, and theoretical coding, and subthemes were regrouped to generate analytic themes that were discussed to create the final set of themes.
Results
The sample consisted of 12 female breast cancer survivors diagnosed within 6 years before study enrollment. Participant ages ranged from 45 to 75 years with an average of 56 years, and all reported completing postsecondary education. At baseline, symptom severity for cognitive problems was rated from 4 to 7 out of 10 with an average score of 5.5 (standard deviation [SD] = 1.5). Fatigue at baseline was rated from 2 to 8 with an average score of 4.5 (SD = 2.2). See Table 3 for further details related to participant characteristics.
Participant Characteristics (n = 12)
SD, standard deviation.
All participants had finished the 20 session NeurOptimal 2.0 neurofeedback study protocol 5–10 weeks before completing an interview. Through qualitative data analysis we were able to identify two overarching themes, impact and experience, and six subthemes as described next. See Table 4 for a summary of themes and sample quotes.
Summary of Interview Themes
Theme 1: impact
We identified three subthemes related to the impact of cancer and neurofeedback. The first subtheme,
The second subtheme related to impact,
The third subtheme,
Theme 2: experience
We identified three subthemes related to the experience of neurofeedback training with the NeurOptimal 2.0 system. Most participants described their neurofeedback sessions as an
The second theme related to experience was
The final theme identified was
Discussion
The results of this qualitative study provide further insights into the impact and experiences of breast cancer survivors using dynamical neurofeedback to manage persistent symptoms of cancer treatment.
Impact of neurofeedback
Three subthemes were identified related to the impact of neurofeedback: symptom impact, dramatic effect, and symptom improvement. These results also support our quantitative findings, which are reported elsewhere, that demonstrated that a 20-session neurofeedback protocol delivered over 10 weeks was feasible and acceptable, and this resulted in significant decreases in participant perceived cognitive deficits, fatigue, sleep problems, and psychological symptoms. Our qualitative findings illustrate the debilitating symptoms that participants were continuing to experience years after their treatment ended and the impact it had on their lives, particularly challenges related to returning to work.
Following the neurofeedback protocol, most participants described a dramatic shift in their symptom experience, including renewed energy and concentration. This theme was previously reported in a qualitative study exploring both neurofeedback provider and their cancer survivor client experiences with neurofeedback, in which the impact was described as “transforming lives.” 22
Some participants reported a reduction in their anxiety, including worrying about the cancer. This is an interesting finding as fear of cancer recurrence is a significant, unmet psychological need for cancer survivors even 10 years after cancer diagnosis.24,25 This would be an important variable to evaluate in future studies of neurofeedback for cancer survivors, as studies of psychological interventions have yielded only small effect sizes. 25
In addition, the presence of other late or long-term effects related to cancer treatment may contribute to anxiety and fear of cancer. 26 Thus, managing fatigue and cognitive issues through neurofeedback may indirectly improve this issue.
Recent studies have also demonstrated positive results for other symptoms experience by cancer survivors such as chemotherapy-induced peripheral neuropathy.27,28
Experience of neurofeedback
Three subthemes were identified related to the experience of neurofeedback: enjoyable experience, lack of side effects, and recommend for cancer survivors. In addition to their positive symptom experiences, participants were overwhelming in their support of neurofeedback for other cancer survivors given their own relaxing experiences of the therapy, and the lack of negative side effects. Participants in a previous interview study similarly described their neurofeedback sessions as a “comforting experience,” and while recommending the therapy for other cancer survivors also commented on the lack of accessibility due to lack of awareness and costs that were not covered by health insurance. 22
Although the use of neurofeedback for a number of clinical conditions has grown worldwide, the therapy has not achieved acceptance by the traditional medical community due to lack of rigorous scientific research demonstrating effectiveness. 29 Thus, further well-designed studies are needed to build the evidence base for use of neurofeedback and specifically dynamical neurofeedback for cancer survivors experiencing persistent symptoms such as PCCI and fatigue. Recommendations to improve the rigor and replicability of applied neurofeedback research include reporting a priori sample size calculations and data collection stop rules, standardization of research practices and reporting, and preregistration of study protocols. 30
Conclusion
Results of this qualitative study suggest that dynamic neurofeedback had a dramatic and meaningful positive effect on persistent symptoms experienced by breast cancer survivors, without any negative side effects. Participants in our sample found the neurofeedback sessions to be enjoyable and recommend that they be offered to all cancer patients. These results will be of interest to cancer care and primary care providers seeking safe and effective interventions to address persistent symptoms in their cancer survivor patients such as PCCI. Clinical trials with larger sample sizes are needed to corroborate our findings. Establishing clinical effectiveness could encourage adoption of neurofeedback into routine cancer care and health insurance coverage.
Footnotes
Acknowledgment
Neurofeedback provided by: Linda Beckett, MD, Kingston Institute of Psychotherapy and Neurofeedback, Kingston, ON, Canada.
Authors' Contributions
M.L.-F.: conceptualization (equal); formal analysis (equal), funding acquisition (lead), and investigation (lead); writing-original draft (lead); writing-review and editing (equal). J.T.: conceptualization (equal); formal analysis (equal), writing-review, and editing (equal).
Author Disclosure Statement
No competing financial interests exist.
Funding Information
IN-CAM Canadian CAM Research Fund (CCRF) (TRAQ#6016921). Queen's University School of Nursing Research Development Fund (RDF) (TRAQ#6017393).
