Feasibility of a Digitalised Cognitive Training Programme in Children Treated for Brain Tumours

ABSTRACT

Aim

Few evidence‐based methods are available in cognitive neurorehabilitation for children. The aim of this study was to evaluate the feasibility of a digitalised version of the Swedish Memory and Attention Re‐training in children treated for brain tumours.

Methods

Children referred to neurorehabilitation after brain tumour treatment in Stockholm, and their parents, were invited to participate and train for 4 weeks with the programme. Evaluation considering time consumption, motivation and overall experience of the programme was made in weekly meetings with a supervisor and through questionnaires.

Results

Three children aged 10–14 and their parents participated. The amount of daily training was considered acceptable, the digitalised format was viewed as appealing, and strategies learned were considered applicable to everyday life. However, the programme was perceived as too short and needed more levels of difficulty.

Conclusion

We consider the programme feasible for children with attention and memory problems after brain tumour treatment. Further accommodations should include a wider range of difficulty levels in exercises and further promote far‐transfer effects.

Summary.

• Evidence‐based methods for cognitive rehabilitation are needed to improve the quality of life for survivors of paediatric brain tumours.

• A digitalised version of the Swedish Memory and Attention Re‐Training was evaluated in three families of survivors and considered feasible and applicable to everyday life.

• Further accommodations should include a wider range of difficulty levels in exercises and further promote far‐transfer effects.

Abbreviations

AMAT‐c

Amsterdam Memory and Attention Training for children

SMART

Swedish Memory and Attention Re‐Training

SMART‐d

Swedish Memory and Attention Re‐Training digital edition

1. Introduction

The growing number of paediatric brain tumour survivors has led to increased attention to the consequences for further development and quality of life. Long‐term follow‐up studies in adult survivors show significant impairment in neurocognitive functioning as well as lower educational and employment rates compared to unaffected peers [1, 2, 3]. The most common cognitive sequelae are difficulties in attention, processing speed, working memory and executive functions [4, 5, 6]. Cognitive rehabilitation for the paediatric population is of growing interest, but few methods have been systematically evaluated. Digitalised programmes have been shown to increase compliance compared to in‐person interventions, due to increased availability [7].

The Amsterdam Memory and Attention Training for children (AMAT‐c) was developed in the Netherlands for children with attention and memory problems after being treated for cancer [8]. The original method consists of a 20‐week programme, led by a parent or a teacher coach and involves a combination of daily practice and games on the one hand and exercises in specific attention and memory techniques on the other. The training builds on a modified hierarchical model of attention by Sohlberg and Mateer [9] where attention is differentiated into three levels: sustained attention, selective attention and mental tracking. Each level is dependent on the more basic level. In the same way, Hendriks and van den Broek‐Sandmann [10] differentiated memory processes into three levels corresponding to the sensory register, the working memory and the long‐term memory. Mental tracking is described as the ability to coordinate and integrate attention and memory processes [11].

A modified, translated and culturally adapted version of the programme, shortened to 17 weeks and renamed Swedish Memory and Attention Re‐Training (SMART), was evaluated in a randomised controlled study of 18 children with acquired brain injuries and a control group of 20 children who performed a chosen interactive activity [12]. Effects on memory and attention were seen at the end of treatment and were found consistent after 6 months [13]. Overall the SMART/Amat‐c has been tried with a total of 61 children in Europe and Australia in six different studies. The studies have indicated positive effects on attention and memory performance in children with acquired brain injuries, including paediatric brain tumour survivors [8]. Although all results could not be statistically verified, they suggest far‐transfer effects. The children seem to benefit from the training regarding their behaviour, self‐confidence and learning strategies. An update and adaptation of the method to a digital environment has been suggested to increase compliance and availability.

The aim of the current study was to evaluate the feasibility of a digitalised, coach‐supported version of SMART, the SMART‐d, before conducting a study of the efficacy in a larger group of children. The results of the current study will be used to make modifications in accordance with the opinions of participating families before testing efficacy. The main study question in the current study was whether the SMART‐d was feasible for cognitive training in a group of children surviving brain tumours, ages 7–17. In accordance with standard procedures for feasibility studies [14] we also wanted to measure whether the eligibility criteria were relevant and what the childrens' and parents´ overall experiences of the training programme were. We wanted to know if the exercises in the programme corresponded with the childrens' everyday challenges and if the time frames were acceptable for the parents and children. Finally, we wanted to examine whether the exercises were perceived as motivating to the children and if the level of difficulty in the exercises would fit the age group.

2. Methods

2.1. Participants

Families of children aged 7–17 years, who were treated for brain tumours at Astrid Lindgren Children's Hospital, Stockholm, Sweden, and referred to neurorehabilitation during 2021, were asked to participate in the study if they met the inclusion criteria. The recruitment period was lengthened due to few inclusions, and patients referred during 2022 were also included. Parents and children were contacted by telephone or in person by one of the appointed supervisors of the programme and were also given age‐adapted written information about the study. If they showed interest in participating, a meeting was arranged for more information. The children had previously been neuropsychologically assessed after treatment termination according to national follow‐up protocols [15].

The children were to have a confirmed impairment of attention and/or working memory, defined as significantly lower results, one standard deviation or more, in these areas compared to full‐scale intelligence quotient. Participation required that both the child and at least one of the parents were motivated to take part, since the coaching role of the parent is an essential part of the programme. Tumour treatment was to be completed no less than 6 months and no more than 5 years before entering the study. Children were excluded if they had an intelligence quotient of less than 70. Children were also excluded if they had severe difficulties that affected their capacity to participate, for example, in activities of daily life, pre‐tumour neurological disease or psychiatric disorder, cognitive, sensory, physical, or language impairment. Children and adolescents and/or parents not fluent in the Swedish language were also excluded. Every family was assigned a professional supervisor who introduced them to the programme. The supervisors were all licensed psychologists working in neurorehabilitation.

2.2. Training

The children were asked to train with the programme for about 20 min per day, 5 days a week for 4 weeks together with their parent. Every week, they had a digital meeting with their supervisor for evaluating the week's training. The programme is based on exercises from the analogue version of SMART, transformed into game‐like computerised tasks that are as similar as possible to the original. The total amount of exercises was reduced. The selection of exercises was based on the possibility to transform them into a digital format. Exercises were also chosen to represent different levels in the previously described theoretical model.

The programme contains an introduction, followed by one chapter for each week. Each chapter starts with preparations, followed by exercises for the week. The exercises are graded in difficulty to enable a level that fits the child. There are also two different versions of the programme—one for younger children aged 7–12 years and one for older children aged 13–17 years. The parents are an important part of the programme, coaching their child in focusing on the training and identifying obstacles and useful strategies. Likewise, the professional supervisors help the participants by discussing the strategies and encouraging metacognitive reflection in the weekly consultations. In the preparations section, the programme provides a checklist of things to think about before starting the training, such as the lighting, temperature and acknowledging things that might draw attention from the exercises. Five different relaxation exercises are presented for the child to choose from. The purpose is to help the child focus by being relaxed and mentally prepared.

After the preparations and relaxation sections, two to four exercises for attention, memory and learning strategies are presented each day. The attention exercises include tasks such as identifying and counting sounds and visual scanning. Verbal and visual memory tasks include, for example, word and sentence memory and memory of visual patterns. After each exercise, the child is asked which strategies were used, if any. These are listed and discussed in the weekly sessions with the supervisor. A five‐step study technique (described in the Appendix A) is introduced during the third week. The child is encouraged to practice and apply the technique to a few suitable homework assignments from school.

2.3. Evaluation

At the end of each week, the children and parents filled out a short form with questions about how they experienced the training, whether or not they completed all exercises, how much time was spent on the training, and if they encountered any problems. The parents were also asked to rate their child's motivation to use the programme, as well as the engagement during training. The children were asked if exercises were perceived as fun or not and if they were easy or difficult. Both children and parents were asked whether or not they considered strategies learned in the programme useful in daily life and if skills trained in the programme corresponded with everyday challenges. Evaluation was also made orally with the supervisor in the weekly digital consultations, according to a semi‐structured questionnaire, both assessing the topics in the short form and giving a possibility to add suggestions and discuss improvements of the application. After the completed training period, the parents also filled out a summarised evaluation of the programme (Table 1).

TABLE 1.

Parents' and childrens' ratings. *Results out of three remaining families. **Parents' ratings of their child's motivation taking on the exercises, five indicating highest motivation. ***Parents' ratings of their child's engagement during training. ****1 = fun, 2 = neither fun nor not fun, 3 = not fun ***** 1 = too easy, 2 = neither too easy nor too difficult, 3 = too difficult.

	Week 1	Week 2	Week 3	Week 4*
Average time spent per day	16.8	21.3	28	21.6
Motivation, 1–5**	4.25	4.0	4.0	3.0
Engagement, 1–5***	4.25	3.75	4.25	4.0
Amusement, 1–3****	2.0	2.0	2.0	2.0
Difficulty, 1–3 (parents)*****	1.5	2.0	2.0	2.0
Difficulty 1–3 (children)*****	1.5	2.0	2.0	2.0

3. Results

In total, 24 children who had been treated for brain tumours were referred to the neurorehabilitation team during the time period and informed about the study. Out of these, 11 patients did not meet the inclusion criteria, either due to time since treatment or families not being fluent in the Swedish language. Most of the 13 remaining families were interested but felt unable to take part because of time constraints, other priorities and their child's fatigue. Three families of boys aged 10–14 took part. One child used the version for younger children. One child had mild symptoms of anxiety and depression but was receiving treatment and therefore not considered as a reason for exclusion.

The families´ overall experience of the training programme was that the digitalised format was appealing to the children and generally easy to navigate. Instructions were overall considered to be easily understood and applied. Parents said that the programme had helped them understand some of the difficulties that their children were struggling with. This was considered one of the most important parts of the training. All of the families carried out the preparation and relaxation exercises and also completed all attention and memory exercises in the first 2 weeks. In the last 2 weeks, one of the families did not complete all exercises due to the lack of time. The overall commitment to the programme was high, although the families struggled with finding the appropriate time for training, taking the school schedule, homework and fatigue into account. All of the families reported having tried out new strategies during training.

Memory problems in daily life tasks and school assignments corresponded well with challenges met during training. Specifically, difficulties remembering written information were considered to correspond well with the exercises for memorising sentences. This exercise corresponded well with daily life challenges, such as listening to and remembering instructions in home and school environments. The parents said that some of the strategies were useful at home and in school. The children's opinions on applicability in daily life were more varied. A couple of them mentioned to their supervisor that they were able to apply memory strategies in school and preparation/relaxation to better focus on homework assignments. One child did not find the strategies useful. The five‐step study technique was found useful by the children to prepare for examinations in school. Ratings of usefulness did not differ between ages.

All the families reported that the amount of time for daily practice suited their child well. The variation of time spent was wide, from 7 to 40 min. More time was spent during the first and last week, compared to the weeks in between. The parents rated the motivation of the children as relatively high, on average 3.6 on a scale of 1 to 5, but slightly lower during the last week of training than during the first weeks. The children's own ratings of the exercises being fun or not were consistent during the period and typically stated as a 2 on a scale of 1 to 3. The difficulty of the exercises seemed important for motivation. One family commented that they would have appreciated some kind of rewards to raise the child's motivation.

Overall, the degree of difficulty in the exercises was reported as satisfactory by both parents and children. However, two of the families requested more levels of difficulty. Exercises were viewed as too easy in the first week by one of the children, but more challenging as the training went on. One family reported that their child would have benefited from more repetition to learn the five‐step method properly. The five‐step method was perceived as challenging by one family since the child was not fully fluent in reading.

4. Discussion

The families' ratings of their overall experiences of the programme show that it was viewed as appealing to the children and easy to use. Parents reported having gained a better understanding of their child's difficulties, which was something that they were not asked but rather commented on spontaneously. We consider this an important result in itself.

The overall burden of stress, fatigue and extra workload in the families of paediatric brain tumour survivors affected the recruitment process, much alike similar studies [16, 17, 18]. Although the recruitment period was extended, only three families participated in the end, which makes it hard to make generalisations from the results.

Exercises in the application were viewed as corresponding well with challenges met in daily life. Some additional levels of difficulty could be added to suit the great variability in working memory capacity and attention span in paediatric brain tumour survivors. An addition of exercises targeting selective attention would also be an improvement, since this is often challenging for the patients.

The programme was considered acceptable concerning time frames. However, one family did not complete all exercises in the last 2 weeks. There was a large variation in the amount of time spent on the exercises, but this did not seem to be associated with motivation or level of difficulty. The length of the training period was considerably reduced compared to the original SMART version. This is probably beneficial for compliance, but it is yet unknown how this might influence the training effect. Other digitalised training programmes with a similar amount of training, however, have been evaluated as effective in improving attention and memory performance [7].

The digitalised format has previously been described as helpful in similar training programmes, promoting adherence and completion of training [7, 19]. The enhanced availability that comes with the digitalised format is essential for many families of paediatric brain tumour survivors, but might not suit all. The parents in these families often need unloading both emotionally and in everyday practical issues. In some cases, the supervision might rather be held in person in order to strengthen alliance and motivation and give more support. Although the transfer effects of digital training programmes have been uncertain in many studies, focusing on metacognitive strategies seems to be a key aspect [20]. We believe that the weekly meetings with the supervisor are essential in this aspect, as well as the dialogue between the child and the parent coach.

The SMART‐d could be further improved by more tasks similar to situations at home or in school, for example, trying to keep focused in an environment with distractions. Additional opportunities for repetition, including application of the five‐step study technique on more school tasks, could also be beneficial. This would probably require a slightly extended length of the 4‐week programme. A flexible model, where the programme could be used either in school or at home, might increase the possibility for more children to take part in the programme. After these adjustments, a study of the effectiveness of SMART‐d in a larger group of children, including a broader age range, is needed. Comorbidity will be an important question for inclusion or exclusion in a future study of effectiveness. If symptoms of anxiety and depression are present, they should be carefully evaluated but not automatically viewed as exclusion criteria. In some cases, these symptoms are at least partly a consequence of the cognitive problems that the programme is aimed at. However, if psychiatric problems are more severe, it is essential to consider treatment before introducing cognitive training. The parents´ enhanced understanding of their child's challenges and needs could be an important output from the training for many families. The child's own process of understanding challenges and needs should also be an important factor to be evaluated in a future study of the programme's efficiency.

5. Limitations

Only three families participated in the study, which limits the possibility to generalise the results. Also, there were no girls among the children. The study group was also quite homogeneous in age, 10–14 years old, and the programme could therefore not be evaluated for the whole age range that it is intended for. The supervisors being directly involved in evaluation via weekly meetings could have influenced the participants to express their views in a more positive way to keep a good relationship with the supervisor. On the other hand, the discussions were an important part of the evaluation since the participants were able to express themselves more extensively than in the short forms. Additional interviews with a professional who was not involved in the supervision could have increased objectivity.

6. Conclusions

We found the SMART‐d relevant and feasible for paediatric brain tumour survivors aged 10–14 with residing difficulties with attention and memory. However, the small sample size limits the possibility to generalise the results. Some additions and modifications are proposed. The programme could also be valuable to children with similar cognitive challenges, due to other types of acquired brain injuries and should be addressed in future studies of the method.

Disclosure

The authors have nothing to report.

Ethics Statement

Written informed consent was required from all parents or guardians to participate in the study. The study was approved by the Central Ethical Review Board in Stockholm, number 2021‐01494.

No content of this article has been made by use of any Artificial Intelligence tools.

Appendix: The five‐step study technique A.

1. Scan—What is the task about? Look at the amount of text, overall content, headings and images.

2. Motivate – Ask yourself: What do I want to know? What do I need to learn? Plan how much time will I need?

3. Concentrate—What do I need to do to be able to concentrate on the task? How can I plan the reading? Which are my strategies?

4. Repeat—What was the text about? Summarise what I have learned.

5. Think and tell—Evaluate; have I learned what I wanted to learn? Is there something I still don´t know? What went well? What did not go as well? Have I completed the task?

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.