The development of a cognitive rehabilitation and psycho-social group programme for teenage and young adult survivors of brain tumours: A feasibility study

Abstract

Introduction and aims

Treatment for childhood and adolescent brain tumours is often intensive, with significant neurocognitive and psycho-social late effects (Zeltzer et al., 2009). This feasibility Study aimed to inform the development of a cognitive rehabilitation and psycho-social group intervention for Teenage and Young Adult (TYA) survivors of brain tumours.

Methods

A group-based intervention incorporated ideas from the current evidence base, including psychoeducation and compensatory strategy training, with a focus on real-life goals and improving quality of life. Participants (N = 19, 13–24 years) were recruited from the University College London Hospital TYA Oncology Service. Participants had received treatment for a malignant brain tumour and had completed their treatment at least 1 year prior to participation. Four group-based, whole-day interventions ran every 3 months throughout a year. Feasibility criteria were established to answer questions about acceptability of the intervention and recruitment.

Results

Qualitative and quantitative feedback from all four groups demonstrated acceptability and suitability of the intervention with regards to the content, structure and delivery. Recruitment presented more of a challenge with 35% fewer referrals than expected.

Discussion and conclusion

Feedback suggests that the intervention is suitable and acceptable, whilst limitations include numbers of referrals and referral pathways. Future directions are discussed.

Keywords

Psycho-social group brain tumours cognitive rehabilitation teenage young adult cancer feasibility study

Background

In contrast to the acute effects of treatments for brain tumours in childhood, which include fatigue, pain and nausea, and resolve within weeks of treatment completion, late effects do not emerge immediately but after a number of years (Tadman & Roberts, 2007). Young people treated for brain tumours as children have been found to be specifically vulnerable to cognitive deficits across domains of intellectual functioning, academic achievement, memory, attention and processing speed (Palmer et al., 2007). There is also a growing body of evidence that has demonstrated the psycho-social late effects of treatments for brain tumours.

Neurocognitive late effects

Young people treated for brain tumours as children have been identified as being at risk of developing cognitive deficits across domains of intellectual functioning, academic achievement, memory, attention and processing speed (Palmer et al., 2007). Treatments for the most common brain tumours of childhood and specifically the combination of cranio-spinal radiotherapy (CRT) and chemotherapy have been found to have specific effects on working memory, attention and processing speed (King et al., 2017). Although memory deficits have not often been found to be associated with these treatments (unless the CRT is specifically targeting the hippocampal region), Kadan-Lottick et al. (2010) found that a significant number of young people experience self-reported memory difficulties. It is possible that the aforementioned problems with working memory, attention and processing speed may affect encoding of new information, which impacts on the perceived experience of memory concerns for those in this group.

Psycho-Social late effects

There is also a growing body of evidence that has demonstrated the psycho-social late effects of treatment for brain tumours. It has been proposed that cognitive and psycho-social functioning may be bi-directionally related (Zeltzer et al., 2009). Brain tumour survivors have been found to be at high risk of being unable to drive as a result of CRT-related visuospatial, motor and executive impairments (Maddrey et al., 2005). Moreover, several large cohort studies have identified treatments for brain tumours as a risk factor for poorer health-related quality of life, mediated by neurocognitive outcomes, in adult survivors of childhood brain tumours (Hudson et al., 2003; Zeltzer et al., 2008, 2009).

Crucially, from the few studies that have investigated the relationship between age at treatment and subsequent psycho-social functioning, it seems that different stages of development may be associated with specific deficits. Aarsen et al. (2006) found that survivors who received treatment in adolescence reported lower social adjustment, based on a health-related quality of life measure, compared with children treated at younger ages. Receiving treatment for cancer as an adolescent typically results in renewed dependence on parents, and a reduced ability to participate in peer activities, which may threaten the accomplishment of the key developmental tasks of adolescence. Failure to achieve these tasks could predispose adolescent cancer patients to problems with psycho-social functioning that extend into adulthood (Stam et al., 2005).

Having cancer in adolescence presents many emotional and psychological challenges, both during treatment and in the survivorship stage. Physical changes caused by cancer treatments (including hair loss and scarring) may substantially affect developing body image and sense of identity, and the requirement some adolescents face to prematurely confront their own mortality is likely to lead to difficulty in integrating their experiences into normal life once treatment has ended. Indeed, many adult survivors of adolescent cancers report increased post-traumatic stress (Hobbie et al., 2000) and psychological distress (Kazak et al., 2010) compared to survivors of childhood cancers.

Previous research on effective interventions following brain tumours and acquired brain injuries (ABI)

With paediatric cancer survivors at risk of cognitive deficits, there has been a focus on developing evidence-based interventions targeting these difficulties. However, there are few empirically supported treatment options (Hardy et al., 2011), and the literature has provided mixed results on the effectiveness of remedial strategies, with very few good quality RCTs having been conducted (Cappa et al., 2005).

Despite a limited evidence base there have been many documented approaches to cognitive rehabilitation developed over the last 30 years. von Cramon et al. (1991) found that patients with a brain injury benefited to a significantly greater extent from ‘Problem-Solving Training’ than those receiving memory training. Patel et al. (2009) ran a 15-session ‘compensatory learning and problem-solving training’ course for children who had experienced cancer, which showed post-intervention gains and high satisfaction ratings for both parents and children. The use of strategies that compensate for cognitive deficits appear to be the most effective in improving everyday functioning.

Wilson (2009), who developed a comprehensive holistic cognitive rehabilitation programme for adults with brain injuries, incorporated memory groups (education about memory, internal and external strategies), mood management and psychological support groups. Wilson identified that neuropsychological tests do not identify how people with deficits cope in everyday life, nor what they hope to achieve, and therefore argues that the way to measure effective interventions is through the process of working with real-life goals. In connection with this, Sohlberg and Turkstra (2011) used and blended the approaches from applied behavioural analysis (ABA) and continuous quality improvement (Plan, Implement, Evaluate: PIE) in their four components; cognitive compensation, enhanced learning, external aids and environmental adaptation.

Current study

Treatment for childhood and adolescent brain tumours is very challenging. Often this involves intensive treatments with significant side effects including nausea, pain and fatigue. In addition, there is the understandable distress with being diagnosed with such a serious condition and the uncertainty around prognosis. This journey often does not end with remission; young people have to live with significant cognitive, emotional and psycho-social challenges many years after treatment.

Due to the lack of evidence-based interventions, a feasibility study was carried out to inform the development of a novel intervention that targets the psycho-social and cognitive issues seen in this population. In addition, with the challenges of access and engagement, this intervention also needs to be workable, deliverable and accessible.

Aims and Objectives

Following established feasibility study methodology (Orsmond & Cohn, 2015) there are two main questions of this study:

1) Can an intervention be developed that is acceptable to participants?

2) Can appropriate numbers of participants be recruited?

At the end of the feasibility study, we aim to establish an acceptable, deliverable and accessible intervention. Establishing efficacy of the intervention is not part of this study.

DESIGN

Ethics

As this was a feasibility study, it was agreed with the Research and Development Department at [details omitted for double-anonymised peer review] that this could be delivered as part of routine clinical practice without going through the formal NHS ethics process.

Participants

Participants (N = 19, 13–24 years) were recruited from the [details omitted for double-anonymised peer review] Teenage and Young Adult (TYA) Oncology Service. To be eligible for inclusion participants must: 1) during the time of the study be aged between 13 and 25; 2) have received treatment for a malignant brain tumour after the age of 3 years old; 3) have completed their treatment at least 1 year prior to participating in the study and 4) able to manage independently within a group context.

Design and procedure

Following review of the literature into the cognitive and psycho-social effects of brain tumours in childhood, a group programme was developed that focused on four key areas: Identity, cognition, confidence in social situations and emotions. A narrative therapy framework was used to create a cohesive structure and language.

Four whole-day group workshops were facilitated over the year, with participants attending one group only. We aimed to recruit at least six young people per group, with a benchmark figure of 40% attendance to referral rate established from comparable groups run within the service. Therefore, in total, we would need 60 referrals and 24 young people attending the groups.

Following delivery of the initial group, a focus group was facilitated to answer the question of acceptability. Goal-based outcomes as well as qualitative and quantitative feedback was gathered following each group and again after 4-weeks, via telephone. Feedback after each group informed changes for the subsequent group.

An assistant psychologist was recruited to support the development of the group programme, recruitment, data collection and to help facilitate the group along with two clinical psychologists.

Group protocol

The groups were facilitated by two clinical psychologists and the assistant psychologist. Many of the cognitive strategies provided during the day were incorporated into the delivery of the group. As such, workbooks were provided to write down key points from each section, regular breaks were taken and all materials were communicated through visual and verbal means. The final design of the group is as follows:

10–11a.m.: Introductions, icebreakers and personalising of workbooks.

11–12p.m.: Identifying preferred identities and personal qualities.

12–1p.m.: Impact of brain tumour; cognitive, social and emotional.

1–1.30p.m.: Lunch and opportunities for informal peer interaction.

1.30–3.30p.m. Strategies for managing cognitive, social and emotional effects.

3.30–4p.m. Goal setting and feedback.

Results

Evaluation of Recruitment Capability

From March 2019 to February 2020, 39 young people were referred to the group intervention. Referrals were received mainly from psychologists who had completed neuropsychological assessments with young people (n = 26), and psychologists with young people on their therapy caseload that met inclusion criteria (n = 13).

Of the 39 who were invited to attend the group, 19 young people attended one of the group workshops. Our attendance to referral rate was therefore 49%.

Evaluation of acceptability and suitability of intervention

Feedback was obtained at the end of the workshop and 1 month after, via telephone. Consent was given when collecting this feedback to share quotes anonymously. This process has provided us with both qualitative and quantitative data as shown below.

Quantitative feedback

Feedback from all four groups was collected on a four item, 10-point Likert scale (0–10). Young people reported they found the group helpful (8.7/10), they would recommend it to others (8.4/10), they enjoyed attending (9.4/10) and they learned helpful information from the group (7.4/10).

Data was also collected at the end of the group on strategies that young people wanted to try and incorporate more into their lives. At the end of each group, young people were asked to choose three ideas they would like to continue to implement after the group. All participants provided feedback on their confidence in implementing these three ideas a month later. Overall, participants demonstrated a 36% increase in confidence in applying these techniques with positive effects.

Qualitative feedback

Qualitative feedback was obtained at the end of each group and 1 month after over the phone. This feedback has been analysed and divided into three broad themes:

Peer support: Being with others who have had similar experiences

Overwhelmingly, the most common feedback from the group was how important and valuable it was to share ideas and be with others who have had similar experiences. It was noticeable how accepting the young people were with each other with regard to some of the cognitive and psychological challenges which they were describing. For example, giving someone with processing speed difficulties the time and space to respond to questions. Some young people commented how this form of understanding and acceptance can be an antidote to feelings of isolation and loneliness that can be around for young people living with the effects of brain tumours. Young people emphasised how helpful it is; ‘to know that others are in the same situation’, ‘to hear other people’s opinions on things”’ ‘knowing that you’re not alone’ and ‘knowing that you are not the only one with the problem - everyone felt connected with the group’.

The powerful impact of meeting and sharing experiences with others who have had similar experiences was captured by a young person who said that; ‘the consequences of my tumour can be very hard on a daily basis. I can’t tell you how amazing it was to be in an environment where we all really connected with each other and understood each other’s challenges’.

Practical strategies and learning from each other

The group covered a range of topics including strategies to manage cognitive challenges, emotions and confidence. The participants commented positively on all these strategies and found it useful to be learning new ideas from the facilitators, whilst also learning from each other. Participants enjoyed learning different strategies aimed at supporting the cognitive impacts of their condition. Some quotes included; ‘I learnt new techniques that makes life a little bit easier’, ‘The memory strategies have really worked’, ‘I learnt a lot about what I could be doing differently and what other people have found helpful’, ‘it has been very helpful to learn about using flashcards as a memory aid’.

Developing self-confidence

The third theme was the positive impact on confidence brought about by being part of the group. This seems to have been achieved through the group process, developing connections, and feeling understood and accepted. Young people reported; ‘I gained in confidence hearing other people’s views of me’, and ‘The group can build your confidence, allows you to meet new people similar to you and gets you different ways on how to cope with some challenges’. In relation to some specific practices around confidence and assertiveness, young people commented: ‘the group helped me build confidence to ask for things’, ‘I’m more confident to ask for help now’.

Discussion

Young people treated for brain tumours as children have been found to be specifically vulnerable to cognitive deficits across domains of intellectual functioning, academic achievement, memory, attention and processing speed (Palmer et al., 2007). There is also a growing body of evidence that has demonstrated the psycho-social late effects of treatment for brain tumours. There are very few empirically supported interventions developed specifically for young people living with the effects of childhood brain tumours. However, more generally within the field of ABI, the use of strategies that compensate for cognitive deficits appear to be the most effective in improving reported everyday functioning (Wilson, 2009).

This study aimed to fill an unmet need through developing an intervention that targets both the cognitive and psycho-social impacts of brain tumours, as well as incorporating compensatory strategies known to be effective within other areas of ABI. As this was a feasibility study, the main aims were to establish whether an intervention can be developed that is deliverable and acceptable to participants and that appropriate numbers can be recruited.

Over a 12-month period, a group programme was developed and four whole-day workshops were facilitated. The intervention groups were attended by 19 young people out of a possible 39 referrals. Although we had a good attendance to referral rate (49%), the potential pool of participants to recruit from was not as big as had been expected. Therefore, on average, we were only able to recruit between four and five participants per group rather than six which had been our target. This suggests that with the same expected rate of referrals, facilitating three workshops per year would allow for an improved attendance rate.

Another interesting finding is that the most reliable source of recruitment was following a neuropsychological assessment (67%). This suggests that a young person with a better understanding of their cognitive challenges might then be more engaged in the offer of a targeted intervention. It would therefore seem appropriate for the group to become an established intervention that can be offered as standard following a neuropsychological assessment.

Results from both qualitative and quantitative feedback demonstrated the group to be highly acceptable and suitable. It can be concluded that participants found the group to be very helpful, that they enjoyed attending and found the strategies to be useful and effective. Most notable was the positive impact of being part of a supportive group and sharing experiences with others who have had similar experiences.

Young people living with the effects of brain tumours are especially vulnerable to having poorer social adjustment and a reduced ability to participate in peer activities (Aarsen et al., 2006). Adolescence can consequently be quite a lonely and isolating time, with this impact of mood and motivation having the potential to exacerbate any cognitive challenges. Therefore, the group process providing a source of connection, understanding and peer support seems to be a vital component in the acceptability of this intervention.

In connection, following feedback regarding the importance of the peer support element, a peer support afternoon was facilitated for anyone that had attended one of the groups. Due to the COVID-19 pandemic this was facilitated using an online video platform and, out of the 19 invited, 11 young people attended. Although not specifically within the scope of the 4-session group feasibility study, feedback demonstrated that this helped to consolidate some of the positive social and psychological effects of the group.

Based on the results there are three main conclusions from the study informing plans going forward:

1. The group is best attended by young people who have received a neuropsychology assessment. Therefore, it is recommended for the group to be built into the existing pathway for neuropsychological assessments post treatment for brain tumours as part of their rehabilitation.

2. In order to establish a more acceptable attendance rate, three groups per year (rather than 4) would best meet the ongoing demand.

3. Alongside three intervention groups for new participants, twice yearly peer support sessions will be offered for all young people that have attended a group. The aim of these will be to further consolidate the learnings from the group and support social connectedness with a population that can often be vulnerable to the effects of social isolation.

As this was a feasibility study efficacy of the intervention was not established. The next step would be to evaluate the effectiveness of the group on cognitive and psycho-social functioning.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is supported by EMS Ltd.

ORCID iD

Xeni Daniilidi

Author biographies

Daniel Glazer is a clinical psychologist working in the Child and Adolescent Psychology Service at University College London Hospital.

Charlotte Valentino is a clinical psychologist working in the Child and Adolescent Psychology Service at University College London Hospital.

Xeni Daniilidi is an assistant clinical psychologist working in the Child and Adolescent Psychology Service at University College London Hospital.

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