title: 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.
authors.affiliation: Questions or comments about this article may be directed to Kylie M. Wright, MN BN RN, at kyliem.wright@sswahs.nsw.gov.au. She is a Clinical Nurse Consultant, Liverpool Hospital, and New South Wales Oncology Group, Neuro-oncology, Cancer Institute of New South Wales, Sydney, Australia. Grahame K. Simpson, PhD MAASW MAPS, is a Senior Social Worker-Clinical Specialist, and Associate Professor/Group Leader of the Brain Injury Rehabilitation Research Group, Ingham Institute of Applied Medical Research, Liverpool Hospital, Sydney, Australia. Eng-Siew Koh, MBBS FRANZCR, is a Staff Specialist in Radiation Oncology, New South Wales Oncology Group, Neuro-oncology, Cancer Institute of New South Wales; Collaboration for Cancer Outcomes Research and Evaluation, Liverpool Hospital, University of New South Wales; and Liverpool Cancer Therapy Centre, Liverpool Hospital, Sydney, Australia. Diane L. Whiting, BA(Hons) M Psychol(Clinical), is a Senior Clinical Psychologist, Liverpool Brain Injury Rehabilitation Unit, Liverpool Hospital, Sydney, Australia. Lauren Gillett, BA Psy(Hons) DPsy, is a Clinical Psychologist, Brain Injury Rehabilitation Research Group, Ingham Institute of Applied Medical Research, Sydney, Australia. Teresa Simpson, MC BSW RN, is a Senior Social Worker, New South Wales Oncology Group, Neuro-oncology, Cancer Institute of New South Wales, and Liverpool Cancer Therapy Centre, Liverpool Hospital, Sydney, Australia. Rochelle Firth, MN BN RN, is a Nurse Practitioner, Department of Neurosurgery Royal North Shore Hospital, and New South Wales Oncology Group, Neuro-oncology, Cancer Institute of New South Wales, Sydney, Australia.
authors.forename: Kylie M
authors.initials: KM
authors.lastname: Wright
authors.forename: Grahame K
authors.initials: GK
authors.lastname: Simpson
authors.forename: Eng-Siew
authors.initials: ES
authors.lastname: Koh
authors.forename: Diane L
authors.initials: DL
authors.lastname: Whiting
authors.forename: Lauren
authors.initials: L
authors.lastname: Gillett
authors.forename: Teresa
authors.initials: T
authors.lastname: Simpson
authors.forename: Rochelle
authors.initials: R
authors.lastname: Firth
mesh_terms: D000328:Adult; D001932:Brain Neoplasms / Q000175:diagnosis / Q000451:nursing*; D017028:Caregivers / Q000193:education*; D003072:Cognition Disorders / Q000175:diagnosis / Q000451:nursing*; D054626:Consumer Health Information / Q000458:organization & administration* / Q000706:statistics & numerical data; D017144:Focus Groups; D006282:Health Personnel / Q000193:education*; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D001523:Mental Disorders / Q000175:diagnosis / Q000451:nursing*; D009517:New South Wales; D010353:Patient Education as Topic / Q000458:organization & administration*; D014600:Utilization Review