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. 2023 Jun 13;10(5):408–417. doi: 10.1093/nop/npad031

Psychosocial interventions for personality and behavior changes in adults with a brain tumor: A scoping review

Emma McDougall 1,✉, Lauren J Breen 2,3, Anna K Nowak 4,5, Haryana M Dhillon 6,7, Georgia K B Halkett 8
PMCID: PMC10502785  PMID: 37720389

Abstract

Background

The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability.

Methods

This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. Searches were conducted in PsycINFO, CINAHL, Medline (Ovid), and Scopus. We synthesized studies published from 1996 to 2022 that evaluated interventions to manage brain tumor related personality and behavioral changes in adults. A data extraction tool were used based on the Joanna Briggs Institute template. Results are presented in a summary table and a narrative synthesis was conducted.

Results

Three thousand and five hundred and ninety-four records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles and 5 interventions met the inclusion criteria. The interventions were diverse in duration, delivery modality, setting, and participation (eg, the patient individually or patient and carer). The interventions reported improvements in the targeted personality and behavior change symptoms for patients with primary brain tumors. Four studies included a measure of personality and behavior change symptoms and two studies included a measure of outcomes for carers and reported improvements in carer knowledge and a reduction in carer distress. All studies sampled fewer than 100 participants. Studies had limited follow-up data and different tools were used to assess the presence and nature of personality and behavior changes.

Conclusions

There is a dearth of psychosocial interventions to support patients and their carers to manage brain tumor related personality and behavior changes.

Keywords: Brain tumor, interventions, personality and behavior changes, scoping review

In 2019, there were 347 992 reported global cases of brain and central nervous system cancers.1 Patients with brain tumors experience a variety of neurological symptoms together with progressive physical and cognitive deterioration and changes to psychosocial functioning requiring management by a multidisciplinary team and support from their family and carers.2–4 Personality and behavior changes can include aggression, apathy, paranoia, disinhibition, and emotional lability.5

Brain tumor related personality and behavior changes can be complex to manage due to their biopsychosocial origins. Changes may be related to the location of the tumor, disease progression, intracranial pressure, edema, premorbid psychiatric condition(s), psychological adjustment to receiving the diagnosis, and effects of treatments such as surgery, radiotherapy, and chemotherapy.6 Management of these changes may be compounded by tumor and/or treatment-related impacts on a patient’s insight/self-awareness regarding the presence and/or severity of personality and behavior resulting in underreporting of symptomology.7

Personality and behavior changes are not only difficult to address but occur frequently in people with brain tumors. Simpson et al.8 reported behavioral changes were present among 7%–40% of patients across high-grade glioma (HGG), low-grade glioma, and benign brain tumor diagnoses. A systematic review of 18 studies reported personality and behavior changes occurred in up to 67% of people with glioma.9 However, this is likely an underestimation due to the nature of personality and behavior changes impacting patients’ insight that these changes have occurred.8

Personality and behavior changes are among the most challenging symptoms to manage for people with brain tumors. The presence of personality and behavior changes is an area of concern for both patients10 and their family members, with relatives of people with brain tumors reporting personality change as one of the factors associated with carer’s poor quality of life11 and carer distress.12–15 Carers of people living with brain tumor also report feeling unprepared or unable to manage personality and behavioral changes and the presence of behavioral changes in patients results in lower caregiver mastery.9,14,16–19 Carers also report information and support needs related to understanding personality and behavior changes and how to best support the patient to manage these changes.20 As such, this review will also assess if interventions for personality and behavior changes in patients with brain tumors involve the participation of carers and if outcomes for carers are assessed.

A systematic review21 of palliative and supportive care needs for patients with high-grade glioma (HGG) and their carers highlighted the need for neuropsychological assessment to support coping strategies, focusing on managing behavior changes in patients. At the time of Boele et al. review22 of the diagnosis and management of psychiatric symptoms in patients with glioma, there were no intervention programs available that aimed to manage patients’ with glioma difficulties with changes in behavior and personality. Recent systematic reviews have collated the current evidence base for supportive interventions for neuro-oncology caregivers.23–26 However, there is a limited understanding of the scope of available interventions aimed at managing personality and behavior changes in patients with brain tumors. There is also a gap pertaining to whether these interventions improve outcomes for their carers.

Objectives

We aimed to describe the intervention characteristics, the effectiveness of the interventions and explore if the intervention improved outcomes for adults with brain tumors and their carers. This scoping review synthesizes studies addressing brain tumors related personality and behavior changes (aggression, apathy, paranoia, disinhibition, and emotional lability) in adults and explores if these interventions had an impact on outcomes for carers.

Review Questions

“What are the characteristics of psychosocial interventions tested for the management of personality and behavioral changes in adults with brain tumors?”; and a secondary review question “Do specific interventions for the management of personality and behavioral changes in adults with brain tumors improve outcomes for patients and/or their carers?”

Methods

This scoping review followed the Joanna Briggs Institute framework for scoping reviews, including the use of Population, Concept, and Context framework27 and the Preferred Reporting Items for Systematic review and Meta-Analysis protocol extension for Scoping Reviews checklist (PRISMA-ScR).28 A scoping review methodology was used as this aligns with the research aims of summarizing the characteristics of interventions tested for the management of personality and behavioral changes in adults with brain tumors and exploring the breadth of the available research in this area. The protocol for this scoping review was prospectively registered on Open Science Framework (registration web address: https://osf.io/y6m9a) on July 12, 2021.

Inclusion Criteria

Study type and year

Study designs with a comparator to measure change in personality and behavior symptoms (eg, case studies, controlled trials, feasibility or pilot studies with control groups, or pre-post design) were included. The interventions could be aimed at patients, carers, or both, with outcomes assessed by any outcome measure for carers (eg, carer knowledge, distress, and preparedness) using any tool and an outcome measure for personality and/or behavior changes in patients using any tool.

Searches were limited to publications from the last 25 years. This time frame reflects the recent advances in multimodality therapy for glioblastoma incorporating surgery, radiotherapy, systemic therapy (chemotherapy, targeted therapy), and supportive care,29 and when psychosocial interventions in oncology emerged. No limits on language were set.

Participants

Adult (over 18 years) with central nervous system tumor

The World Health Organization Classification definition of Tumors of the Central Nervous System30 was used and primary or metastatic tumors were included. Searches were limited to adult patients with brain tumor and their carers (>18 years). Studies that focused on acquired brain injuries that may have included patients with brain tumors were excluded to ensure samples primarily included patients with brain tumors.

Concept

Tumor-related personality and behavior changes

As there are various definitions of personality and behavior changes, we followed the criteria provided by the Diagnostic and Statistics Manual fifth edition31 for Personality Change Due to Another Medical Condition (diagnostic code 310.1). The DSM-5 definition describes “a persistent personality disturbance that represents a change from the individual’s previous characteristic personality pattern due to the direct pathophysiological effects of a medical condition.”31 The diagnostic features include aggression, apathy, paranoia, disinhibition, and emotional lability. The DSM-5 highlights these symptoms can be found in a variety of medical diagnoses including central nervous system neoplasms (tumors), head trauma, and epilepsy.31

Context

Psychosocial intervention

We followed the description of psychosocial interventions used in similar reviews focused on oncology patients.32,33 Psychosocial interventions refer to non-pharmacological interventions including counseling, psychotherapy, behavior therapy, education, and provision of information and social support.

Exclusion Criteria

Exclusion criteria were decided a priori. Review articles and study protocols were excluded.

Although patient distress and cognitive difficulties and the presentation of personality and behavior changes can overlap and are related, this review focuses on psychosocial interventions that specifically target the management of brain tumors related personality and behavior change symptoms (using the DSM-5 definition of personality change related to a medical condition) and contain a measure of one or more of these symptoms; therefore, interventions focused on psychological distress, anxiety or depression only (ie, without the presence of descriptions of personality and/or behavior changes), were excluded.

Information Sources

Studies were identified from CINAHL, PsycINFO, Medline (Ovid), and Scopus. References in identified papers were reviewed for relevance. ProQuest Dissertations, Theses Global for international theses and dissertations, and Google search engines were searched to identify gray literature.

Search Strategy

Terms related to the population (adults with brain tumors), concepts (personality and behavior changes) and context (psychosocial interventions) were adapted for each database, considering the MeSH and subject heading variations. The search strategy (see Table 1 for example) was developed based on other reviews conducted in the topic area24 and refined in consultation with a university librarian. The initial search of databases was conducted on August 6, 2021, and repeated on September 14, 2022 to update the findings. All references were imported into Endnote 20.4.1.

Table 1.

Medline (Ovid) Search Strategy

1 exp Central Nervous System Neoplasms/
2 exp Glioma/
3 (personalit* or behavio* or aggress* or irritabili* or labil* or disinhibit* or apath* or paranoi* or psych*).ti,ab.
4 ((brain or cereb* or “spinal cord” or cns or “central nervous system” or pineal or pituitary) adj3 (cancer* or carcinoma* or tumor* or tumor* or malignan* or neoplas* or lymphoma* or hemangioma)).ti,ab.
5 (glioma* or astrocytoma* or meningioma* or oligodendroglioma* or glioblastoma* or ependymoma* or medulloblastoma* or craniopharyngioma* or schwannoma or ganglioglioma* or “primitive neuroectodermal tumor*”).ti,ab.
6 1 or 2 or 4 or 5
7 (Intervention* or manage* or therap* or educat* or psychoeducat* or psychosocial or psychosocial or support* or care* or social*OR counsel*).ti,ab.
8 3 and 6 and 7
9 limit 8 to (yr = “1996 -Current” and “all adult (19 plus years)”)
10 limit 9 to “review articles”
11 9 not 10
12 (child* or pediatric or pediatric or adolescent or infant).ti.
13 11 and 12
14 11 not 13
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Study Selection

Duplicates were identified and removed using Endnote 20.4.1 and checked with Excel. The remaining titles and abstracts were screened for possible inclusion by the first author. For the records potentially meeting inclusion criteria, full texts were reviewed by the first and last author and evaluated for final inclusion. Disagreements on reasons for exclusion were minor and resolved through discussion between the 2 raters. Inclusion and exclusion decisions were recorded using Excel and Covidence systematic review software (Veritas Health Innovation, Melbourne, Australia).

Data Extraction and Presentation

Data were charted by the first author from included studies. Where there was missing data, study authors were contacted once via email. Data extraction and data management were recorded in Covidence systematic review software and Excel.

The following information was extracted from included studies when available:

  • Study details: Author, year, country, and design.

  • Sample characteristics: Patient diagnosis, personality and behavior symptoms, age, sex, sample size, and carer demographics.

  • Intervention details: aim, provider, setting, intervention participants (ie, individual, dyadic, and family), dose/duration, and description of the intervention.

  • Study outcomes: assessment time points, outcome measures, analysis approaches, and results.

Results

Figure 1 describes the results of the search and article selection process. Through this process, 4049 studies were identified via the search strategy. After removing 455 duplicates, 3594 records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles (see PRISMA flow chart for reasons). Five studies met the eligibility criteria to be summarized within the scoping review.

Figure 1.

Figure 1.

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PRISMA diagram of study selection and inclusion process.

Study Design and Setting

Studies varied in design (randomized controlled trial, case study, pilot study, non-randomized controlled trial, and quasi-experimental). Interventions were delivered in either a hospital or participants’ homes.

Participant Characteristics

Sample sizes ranged from 1 to 95 participants at baseline. Participants had a range of primary brain tumor diagnoses (see Table 2 for details). The personality and behavior symptoms targeted in the intervention studies were excessive talking (n = 1 study), challenging behaviors, (n = 1), anger (n = 2 studies), and symptoms captured by the Neuropsychiatric Inventory-Questionnaire (NPI-Q; n = 1 study). The majority of participants received their diagnosis less than 6 months prior to the intervention except for Whiting et al.34case study whereby the participant was 5 years post-diagnosis.

Table 2.

Patient Sample Characteristics

Diagnosis Sample Size (N), Age (M), and Sex (F:M)
Study
Country
Design		 Intervention Control Intervention Control Personality and Behavior Symptoms Reported
Thakur36
India
RCT		 Glioma = 8
Pituitary tumor = 4
Meningioma = 12
Other = 16		 Glioma = 13
Pituitary tumor = 7
Meningioma = 9
Other = 11		 n = 40
45
25:15		 n = 40
41
21:19		 Agitation/aggression, dysphoria/depression, anxiety, nighttime behaviors, appetite/eating, disinhibition, and apathy/indifference.
Whiting34
Australia
Case study		 Right side temporal low-grade (two) astrocytoma N/A n = 1
57
Female		 N/A Excessive talking
Whiting 34
Australia
Pilot study		 Primary brain tumor N/A n = 7
45
3:4		 N/A Challenging behaviors
Szpringer37
Poland
Non-randomized controlled trial		 Glioblastoma Glioblastoma n = 18
63
F = 18		 n = 19
65
F = 19		 Anger
Baksi35
Turkey
Quasi-experimental		 Meningioma = 11
Astrocytoma = 11
Pituitary tumor = 12
Oligodendroglioma = 2
Oligoastrocytoma = 1
Ependymal tumors = 1
Other = 7		 Meningioma = 16
Astrocytoma = 5
Pituitary tumor = 6
Oligodendroglioma = 3
Oligoastrocytoma = 1
Ependymal tumors = 5
Cranial and paraspinal tumors = 4
Others = 10		 n = 45
28:17		 n = 50
34:16		 “Bad temper”/anger
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Intervention Characteristics

Three interventions were aimed at specific personality and behavior symptoms and two studies had change in personality and behavior symptoms as a secondary focus of the intervention. Three interventions were education focused. Of the other interventions, one used cognitive behavior therapy frameworks, and another used eye movement desensitization and reprocessing, which is a trauma processing intervention that addresses symptoms related to disturbing or traumatic experiences. A range of health professionals delivered the interventions including clinical psychologist/psychologist (n = 2 studies), nurse (n = 2 studies), and one study reported an intervention team comprising a radiation oncologist, neurosurgical clinical nurse consultant, and a clinical psychologist.

All interventions had a face-to-face delivery component. Two studies included telephone contact at follow-up. Interventions were delivered in an individual setting (n = 4) or group setting (n = 1). Interventions were delivered to the patient and carer dyad in three studies and to the patient individually in 2 studies. The frequency of contact and intervention duration varied from a single 2–3 hours session (n = 2 studies), approximately 3 sessions over a month (n = 2 studies), and 12–14 weekly sessions lasting 60–90 minutes (n = 1 study). The timing of intervention delivery varied from pre- and post-surgery,35at discharge post-surgery36and post completion of steroid therapy and whilst receiving radio- and chemotherapy.37

Control Group

Three studies included a control group. Of these, 2 control groups received routine care35,36Szpringer et al.37non-randomized control group participants consented to psychological evaluations but not to a psychotherapeutic intervention.

Measures

Patient outcome measures were completed by the carer (n = 2 studies), researcher/interventionist (n = 1 study), or self-report by the patient (n = 1 study). The outcome measures used were the Neuropsychiatric Inventory-Questionnaire (NPI-Q; n = 1), MD Anderson Symptom Inventory-Brain Tumor Turkish Form (MDASI-BTTr; n = 1), the Polish validated version of the Hospital Anxiety and Depression Scale (n = 1).

For carer outcomes (n = 2), Whiting et al.34 developed the strategy use measure to assess carer knowledge and Thakur et al.36used the NPI-Q to assess carer distress.

Outcomes and Findings

Patient outcomes

The 3 interventions that targeted personality and behavior symptoms as a primary outcome contained psycho-educational components.15,34,37 Thakur et al.15 did not report a difference in the number or severity of behavioral symptoms at discharge; however, at 1-month follow-up, the experimental group had significantly lower median number of behavioral symptoms (0, IQR 0-1) than the control group (1, IQR 0-2) (U = 530, P = .01) and significantly lower median severity of symptoms (0, IQR 0–1) than the control group (1, IQR 0–4) (U = 538, P = .01).In 2 studies,35,37 the effect of the intervention on anger and irritability (among other symptoms) was measured. Szpringer et al.37 eye movement desensitization and reprocessing intervention saw a significant reduction in anger symptoms from pre-intervention scores of 3.39 ± 1.46 to post-intervention scores of 1.72 ± 0.96 (t = 4.123, P < 0004).

The MDASI-BTTr outcome measure used by Baksi35 contained a sub-domain of affective symptoms of “fatigue, sleep disorder, anxiety, distress, bad temper/anger” and reported significant differences between the postoperative scores and scores at 1-month follow-up between the intervention and control groups. The intervention group (n = 45) showed a significant reduction in affective symptoms from preoperative (median = 4.80) to postoperative (median = 1.80) and 1-month follow-up (median = 1.80), compared to the control group (n = 50), whose symptoms decreased slightly. The difference between the groups over time was significant (χ² = 45.84, P < .001.; χ² = 6.89, P = .032).

Carer outcomes

Two of the five studies measured outcomes for carers; one related to carer knowledge34and one carer distress. Whiting et al.34found there was a significant increase in the median score for the full strategy use measure from 50.5 (IQR 11.3) to 64.0 (IQR 11.0) (Z = 4.95, P < .01) indicating the intervention was effective in improving caregivers’ knowledge of various strategies. Thakur et al.36 reported at 1-month follow-up, the median severity of distress among caregivers in the experimental group decreased to 0 (IQR 0–0), which was significantly lower than the control group’s median of 0.5 (IQR 0–2) (U = 505, P = .001).

Discussion

This scoping review identified 5 psychosocial interventions tested for the management of brain tumors related personality and behavior changes in adult patients. This review aimed to summarize the intervention characteristics and explore if interventions improved outcomes for patients and their carers (when outcomes for carers were assessed). In all studies, an improvement in the targeted symptom for brain tumor patients was reported. The two studies that measured outcomes for carers reported improvements in carer knowledge34and carer distress.36,15Interventions were diverse in delivery setting, intervention provider, and intensity. Many of the interventions contained an educational component and 3 studies involved participation by both the patient and carer.

The duration of illness was less than 6 months for the majority of participants in the included studies. For 3 studies, the intervention was delivered at the time of receiving treatment (either at the time of discharge post-surgery or when receiving radiation and chemotherapy). This timing of intervention delivery aligns with the supportive care framework for the management of HGG38 recommendation to share information about expected personality and behavioral changes upon the completion of radiotherapy. The NICE guidelines39 highlight the variability and fluctuation of neurological symptoms and problems that can occur at different points in the disease, and there is no one specific time when a patient requires neurorehabilitation. Therefore, the guidelines emphasized in their recommendations that referral for a neurological rehabilitation assessment should be considered at every stage of follow-up, including at diagnosis. The importance of screening throughout the illness trajectory for personality and behavior changes is also echoed in the “Optimal care pathway for people with HGG.”40

Research Implications

Variable definition, etiology, and outcome measures for personality and behavior changes

Terms such as “neurobehavioral,” “neurocognitive,” “neuropsychiatric,” and “frontal lobe syndromes” appear to be used interchangeably to describe the personality and behavioral symptoms that occur for people with brain tumors. The variable terms used are perhaps reflective of the multi-factorial etiology of personality and behavior change symptoms. The use of these different terms complicates using the literature as a guide to treatment, as the symptoms they encompass are varied (eg, apathy, aggression, or disinhibition). Interventions effective for one behavioral symptom may not be effective for others. The primary targets of research interventions need to be clearer, such as providing descriptions of specific symptoms or behaviors, especially as the range of targets and treatments expands.

Simpson et al.8 noted there is a lack of standardized criteria and validated tools used to define and measure changes in behavior and personality symptoms for people with neurological impairment. Andrewes and colleagues developed the Emotional and Social Dysfunction Questionnaire41 to address this need for a validated measure for brain injury populations. However, as demonstrated in this review, there are different tools used to assess the presence and severity of symptoms.

Interventions for other conditions with personality and behavior change symptoms

Primary brain tumors share many similar symptoms and functional impairments with other neurological conditions including dementia, stroke, and acquired brain injury. A positive behavior support intervention for adults with an acquired brain injury included one participant with a brain tumor.42 The intervention saw a reduction in challenging behaviors with gains sustained at 8 months follow-up and improved carers’ confidence in addressing difficult behaviors displayed by patients. Similarly, interventions for the treatment of behavioral and psychological symptoms in patients with dementia show that, although some pharmacological interventions had a slightly larger effect size, functional analysis-based interventions (ie, looking at the context of an individual to understand their behaviors as a form of communication surrounding unmet needs) were recommended as first-line management.43 Further investigation is required to explore how interventions for personality and behavior changes in people with dementia or an acquired brain injury may be modified or adapted to meet the needs of brain tumor patients.44

Limitations

Limitations of reviewed studies

The included studies had small sample sizes, limited follow-up data, and used varied measures to assess the presence and nature of personality and behavior changes. The aspects of personality and behavior change symptoms in the included studies were not exhaustive. For instance, no study met the inclusion criteria for the management of paranoia or emotional lability. Furthermore, only 2 studies involved the participation of carers in the study, thus it is difficult to draw any conclusions pertaining to the effectiveness of interventions for carers beyond the individual study level.

Limitations of review methodology

Among the inclusion criteria for this review were studies that targeted brain tumors related personality and behavior symptoms in patients and contained (1) a comparator or measure of change in these symptoms, thus requiring, and (2) the involvement of patients in the intervention. However, this excluded interventions that focused on carer participation only. For example, an education program for HGG carers45 contained modules on the “brain-behavior relationships” and “understanding and coping with cognitive changes” and assessed for carers’ knowledge. However, this study was excluded as it did not target personality and behavior symptoms specifically and thus there was no measure of change in patients’ personality and behavior symptoms. Similarly, the “Making Sense of Brain Tumor”46 psychological intervention has an education component to better understand and manage the physical, cognitive, and behavioral effects of brain tumors (eg, fatigue, memory problems, and apathy). However, Ownsworth’s46 study was excluded as the primary aim of the intervention was to reduce patient distress as such outcome measures assessed distress, depression, quality of life, and existential and functional well-being. Due to the broad nature of the scoping review search criteria, a high number of records was returned. As such, only the first author screened to identify articles for potential inclusion to reduce workload and ensure timely completion of the review (Table 3).

Table 3.

Intervention Characteristics

Study Intervention Description Intervention Provider, Setting, Delivery Format, Participation, and Dose Patient Outcomes Carer Outcomes Findings
Thakur (2019)36 A nurse-led counseling session and a pamphlet was provided to postoperative patients and carers at discharge followed by 1 × phone call at 1-week post-discharge to reinforce the intervention. Nurse
Hospital
Face-to-face and telephone
Patient and carer
3 × contacts		 Neuropsychiatric Inventory–
Questionnaire (NPI-Q)47 		Neuropsychiatric Inventory–
Questionnaire (NPI-Q) used to assess carer distress		 Patients had fewer and less severe behavioral symptoms compared
to the control group at one month.
Carers reported significantly less
severity of distress as compared to the control group at 1-month
follow-up.
Whiting et al. (2019)34 Individual remediation program employing behavioral and cognitive elements. Involved initial psychoeducation, communication skills training, brief relaxation skills training. The carer was encouraged to provide positive reinforcement. Clinical psychologist
Home and hospital
Face-to-face
Patient and carer
1 × 2-hour session		 Behavioral observations of social interactions N/A A decrease in the percentage of time spent talking (target behavior) from 71% at baseline to 14% of the time. Interruptions also decreased and an increase in the average number of questions asked.
Whiting et al. (2019)34 Family members and their relatives with PBT attended a didactic session together and then separated for their own clinician-facilitated discussion groups. The workshop program comprised 5 sections covering education and group discussions. Radiation Oncologist, Neurosurgical Clinical Nurse Consultant, and Clinical Psychologist

Hospital
Face-to-face
Patient and carer
1 × 3-hour workshop		 N/A Strategy Use Measure (SUM) was used to assess carers knowledge Significant post-intervention increases in carers knowledge on the SUM-Family global score.
Szpringer et al. (2018)37 Using the 8-phase EMDR protocol, this therapy aims to reprocess traumatic memories through reinterpretation and inclusion in the existing memory network, using bilateral stimulation. Psychologist
Home
Face-to-face
Patient’s participated in the intervention. Carer’s completed a measure
12–14 × weekly sessions
lasting 60–90 minutes.		 Hospital Anxiety and Depression Scale
Patient Carer Questionnaire (carer reported scale)48 		N/A Self-report on HADS anger items saw a reduction in anger.
Carers observed less anxiety and anger related behaviors in patients in the experimental group compared to the control group.
Baksi et al. (2017)35 Education intervention comprised of (1) information about the preoperative period and early postoperative period provided before surgery, and (2) content relating to the postoperative and discharge period provided after surgery and before discharge. Nurse
Hospital
Face-to-face and telephone
Patient
2–4 × education sessions lasting 30-120 minutes.
Approximately 3 × 5–40 minutes phone calls every 7–10 days in the month following discharge.		 MD Anderson Symptom Inventory-Brain Tumor Turkish (MDASI-BTTr) Form49
Ways of Coping with Stress Scale (WCSS)50 		N/A Statistically significant differences were found between the scores of postoperative period and 1st month follow-up on the sub-domain of emotional symptoms.
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Future Research Considerations

The limited interventions targeted at the management of personality and behavior changes in brain tumor patients necessitate the use of randomized controlled designs, the recruitment of larger samples, and the addition of long-term follow-up. Future research is warranted to explore how interventions for personality and behavior changes in people with dementia or an acquired brain injury may be modified or adapted to meet the needs of neuro-oncology patients.44 Thakur et al.15 findings demonstrated caregiver distress increases with number and severity of behavioral symptoms of the patient. As such, further investigation of the specific support and information needs of carers of people with brain tumors is required to assist them to manage patients’ tumors related personality and behavior changes.

It is important to note the utility of pharmacological interventions for the management of brain tumors related personality and behavior changes.22 However, commentary on the use and effectiveness of pharmacological interventions was beyond the scope of this review and an area for further investigation.

Conclusion

This review established that there is a dearth of psychosocial interventions to support patients and their carers to manage brain tumors related personality and behavior changes. The included interventions saw improvements in the targeted symptoms. The 2 studies that included measures of outcomes for carers saw improvements in carers’ knowledge and a reduction in carer distress. The limited available intervention studies are diverse in duration, delivery modality and setting, and participation (eg, the patient individually or patient and carer). Overall, the included studies had small sample sizes, limited follow-up data, and used varied measures to assess the presence and nature of personality and behavior changes. Further research is needed to investigate the effects of psychosocial interventions aimed at managing brain tumor related behavior and personality changes, using more rigorous designs to inform recommendations for appropriate interventions to implement in clinical practice.

Contributor Information

Emma McDougall, Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute (CHIRI), Curtin University, Perth, WA, Australia.

Lauren J Breen, Curtin School of Population Health, Curtin University, Perth, WA, Australia; Curtin enAble Institute, Curtin University, Perth, WA, Australia.

Anna K Nowak, Medical School, University of Western Australia Perth, Perth, WA, Australia; Department of Medical Oncology, Sir Charles Gairdner Hospital, Perth, WA, Australia.

Haryana M Dhillon, Centre for Medical Psychology and Evidence-Based Decision-Making, School of Psychology Faculty of Science, The University of Sydney, Camperdown, NSW, Australia; Psycho-Oncology Cooperative Research Group, School of Psychology Faculty of Science, The University of Sydney, Camperdown, NSW, Australia.

Georgia K B Halkett, Faculty of Health Sciences, Curtin School of Nursing/Curtin Health Innovation Research Institute (CHIRI), Curtin University, Perth, WA, Australia.

Funding

Emma McDougall is supported by an Australian Government Research Training Program Scholarship. Georgia Halkett is supported by a Cancer Council of WA Research Fellowship.

Conflict of interest statement

The authors have no relevant financial or non-financial interests to disclose.

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