Development and Evaluation of Information Resources for Patients, Families, and Healthcare Providers Addressing Behavioral and Cognitive Sequelae Among Adults With a Primary Brain Tumor

Abstract

Behavioral and cognitive changes in patients with primary brain tumor (PBT) are common and may be distressing to patients and their family members. Healthcare professionals report a strong need for information, practical strategies, and training to assist consumers and better address management issues. A literature review by the current project found that 53% of the information resources currently available to consumers and health professionals contained minimal or no information about cognitive/behavioral changes after PBT, and 71% of the resources contained minimal or no information on associated strategies to manage these changes. This project aimed to develop an information resource for patients, carers, and health professionals addressing the behavioral and cognitive sequelae of PBT, including strategies to minimize the disabling impact of such behaviors. In consultation with staff and patient groups, 16 key information topics were identified covering cognitive and communication changes and challenging behaviors including executive impairment, behavioral disturbance, and social/emotional dysfunction. Sixteen fact sheets and 11 additional resource sheets were developed and evaluated according to established consumer communication guidelines. Preliminary data show that these resources have been positively received and well utilized. These sheets are the first of their kind addressing challenging behaviors in the neuro-oncology patient group and are a practical and useful information resource for health professionals working with these patients and their families. The new resource assists in reinforcing interventions provided to individual patients and their relatives who are experiencing difficulties in managing challenging behaviors after PBT.

Adaptation of families of adult patients with brain tumor: Partial least squares structural equation modeling

“…The program appears to be useful as a support system, especially in this pandemic era. Psychosocial care and information are also reported to be effective ways of improving family resources [ 61 , 62 ]. In addition, the government need to actively consider providing a respite care program to alleviate the burden on the families of brain tumor patients [ 63 ].…”

Challenges and support for family caregivers of glioma patients

“…This was widely accessed by both patients (35%) and family caregivers (52%). The provision of hard copy and digitally provided information sheets on common symptoms and problems in neuro-oncology was evaluated positively (Wright et al 2015). Similarly, caregivers appreciated a brain tumour website, and the possibility to ask health care professionals questions through the website (Piil et al 2015b).…”