Many brain tumour patients have difficulty resuming their family or professional lives after treatment. Symptoms include forgetfulness and concentration disorders. The ReMind app offers a rehabilitation programme to alleviate these symptoms. The app provides recommendations and strategies for a different way of solving everyday cognitive issues as well as a specially developed concentration training game. The first clinical practical trial with ReMind was recently completed successfully [1].

Trigger & implementation
A lot of research was being conducted into cognitive rehabilitation after strokes and traumatic brain injury in the early 2000s. However, brain tumours were rarely the subject of such studies. In 2003, Margriet Sitskoorn, a clinical neuropsychologist at UMCU (currently a Clinical Neuropsychology professor at Tilburg University (TiU) and Karin Gehring, neuropsychologist and currently a senior researcher at Elisabeth Tweesteden Ziekenhuis (ETZ) and TiU developed a face-to-face cognitive rehabilitation programme for brain tumour patients and tested it via a randomised controlled trial (RCT) in 140 patients in the Netherlands. They were the first to dedicate sound scientific research on the treatment of cognitive issues in brain tumour patients: “The research grew way beyond what we initially had in mind and it took more time to complete. But our hard work was rewarded: The programme was found to have a positive impact on both the memory and concentration of the participants and their fatigue was dramatically reduced. The results were published in a renowned scientific magazine [2-4] and awarded a national and an international prize due to the importance of the new insights for this patient group. To this day, it remains the largest study into the cognitive rehabilitation of people with brain tumours”, Gehring clarifies.

After completion of the study in 2010, a period of silence ensued though physicians and patients kept asking about the rehabilitation programme. But the original programme was very demanding and costly to deploy and inaccessible to some patients, in part because they were limited in their ability to travel. A breakthrough was realised when Petra Hoogendoorn, the partner of a brain tumour patient, joined the team. Thanks to her crowdfunding attempt (Stichting ‘t Hoofdgerecht) and contributions by the Innovatiefonds Zorgverzekeraars and CBusineZ, the programme could be translated into an operational iPad app called ReMind. The content of the original, successful rehabilitation programme was incorporated into the app almost verbatim. Many parties were involved in the development of the app, from patients and partners to healthcare professionals, from scientists to software developers and from copywriters to a filmmaker.

In 2015, the app was ready for use and a subsidy by ZonMw generated the financial means for two studies at the ETZ [5, 6]. “We improved the app based on patient feedback received during the pilot. The exercises turned out to be too easy, so we included additional exercises with a higher level of difficulty”, Gehring explains. An RCT has now been completed at Haaglanden MC, Erasmus MC and ETZ [6]. Once again, valuable insights were gained. Gehring: “Both groups included around 20-25 people. ReMind participants completed 86% of the strategy training on average and 91% of the game! An important result was that 100% of participants indicated that they found the app suitable for cognitive rehabilitation upon completion of the study, 90% rated the app between good and excellent and another 95% would recommend the app to other brain tumour patients. The conclusion of the study was that ReMind can be useful and helpful if its timing is adjusted to the needs of the patient.”

Despite the positive results, healthcare professionals remained sceptical about the deployment of a digital solution for cognitive training. They were quickly convinced, however, once it was demonstrated that the app can offer major benefits for the patient. Not just because patients said so, but also because the number of hospital visits among this group declined. The need to travel is a major barrier for many brain tumour patients. In addition, the blended care model of the app-based treatment, where the technical solution is combined with personal attention, was very appealing. More recently, a clinical practical trial was completed. Patients at the ETZ and CZ used the app at their own pace at home, with the telephone guidance of nursing specialists. On this basis, a complete clinical care pathway was designed as a basis for implementation in other hospitals [1]. “Two other pilots with an English version of the app are under way, in collaboration with the University of California, San Francisco [7, 8]. Plus, other renowned universities and institutions abroad have expressed their interest as well!”, says Gehring.

Future
Today ReMind distinguishes itself from other eHealth cognitive rehabilitation programmes because the app has been scientifically validated and focuses on extensive explanation, strategy learning and practise in everyday life. To achieve large-scale implementation of the app and get it covered by insurance companies, however, it will be beneficial to demonstrate the added value of the intervention even more explicitly. In that light, the developers intend to clearly map the costs and benefits of the app. Gehring: “In our practical trial, we were able to rely on the goodwill of nursing specialists at participating hospitals. But the app will ultimately have to be integrated into existing clinical procedures.” In addition, a sound cost-benefit analysis will help demonstrate the social business case to financiers, for example.

“We continue to seek structural funding within existing healthcare pathways. Fortunately, more and more healthcare insurers value the fact that certain interventions allow patients to go home or get back to work sooner. But we also seek funding for things like expanding the app’s compatibility beyond the iPad and obtaining a CE quality label by meeting the MDR guidelines”, Gehring explains. Concrete plans are being forged for application and research of the app among other patient groups with similar (mild to moderate) cognitive issues, such as survivors of breast cancer or other brain conditions, to expand the reach of the cognitive rehabilitation programme. Gehring: “This will make the business case even more compelling while increasing the impact of ReMind. The ultimate goal is to improve the quality of life for as many patients as possible!”

References

1. Brabants Dagblad. Start klinische proef ReMind cognitieve revalidatieapp voor hersentumorpatienten in ETZ en Catharina Ziekenhuis Eindhoven. Maart 2019
2. K. Gehring et al. Cognitive Rehabilitation in Patients With Gliomas: A Randomized, Controlled Trial. J Clin Oncol 2009. 27:3712-3722. https://ascopubs.org/doi/full/10.1200/JCO.2008.20.5765
3. K. Gehring et al. Predictors of neuropsychological improvement following cognitive rehabilitation in patients with gliomas. J Int Neuropsychol Soc. 2011;17(2):256-66.
4. K. Gehring et al. A description of a cognitive rehabilitation programme evaluated in brain tumour patients with mild to moderate cognitive deficits. Clin Rehabil. 2011;25(8):675-92.
5. S.D. Van der Linden et al. Feasibility of the evidence-based cognitive telerehabilitation program Remind for patients with primary brain tumors. Journal of Neuro-Oncology. 2018. https://doi.org/10.1007/s11060-017-2738-8
6. S.D. Van der Linden et al. eHealth cognitive rehabilitation for brain tumor patients: results of a randomized controlled trial. Journal of Neuro-Oncology. 2021. https://doi.org/10.1007/s11060-021-03828-1
7. Taylor J, Luks T, Jakary A, Chang S, Clarke J, Butowski N, Oberheim-Bush NA, Nelson S, Reijneveld JC, Gehring K. Feasibility and efficacy of an iPad-based cognitive rehabilitation program in brain tumor patients. Neuro-Oncology. 2018;20:174-5.
8. Rehabilitation and Longitudinal Follow-up of Cognition in Adult Lower Grade Gliomas. Retrieved from: https://clinicaltrials.gov/ct2/show/NCT03948490?cond=lower+grade+gliomas&draw=2&rank=1