title: Identifying the needs of brain tumor patients and their caregivers.
abstract: The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which >50% of the patients and caregivers thought were "very important" but >30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value < 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process.
authors.affiliation: Division of Neuro-Oncology in the Department of Neurosurgery, University of California, San Francisco, CA 94143, USA. ParvataneniRu@neurosurg.ucsf.edu
authors.forename: Rupa
authors.initials: R
authors.lastname: Parvataneni
authors.forename: Mei-Yin
authors.initials: MY
authors.lastname: Polley
authors.forename: Teresa
authors.initials: T
authors.lastname: Freeman
authors.forename: Kathleen
authors.initials: K
authors.lastname: Lamborn
authors.forename: Michael
authors.initials: M
authors.lastname: Prados
authors.forename: Nicholas
authors.initials: N
authors.lastname: Butowski
authors.forename: Raymond
authors.initials: R
authors.lastname: Liu
authors.forename: Jennifer
authors.initials: J
authors.lastname: Clarke
authors.forename: Margaretta
authors.initials: M
authors.lastname: Page
authors.forename: Jane
authors.initials: J
authors.lastname: Rabbitt
authors.forename: Anne
authors.initials: A
authors.lastname: Fedoroff
authors.forename: Emelia
authors.initials: E
authors.lastname: Clow
authors.forename: Emily
authors.initials: E
authors.lastname: Hsieh
authors.forename: Valerie
authors.initials: V
authors.lastname: Kivett
authors.forename: Rebecca
authors.initials: R
authors.lastname: Deboer
authors.forename: Susan
authors.initials: S
authors.lastname: Chang
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001932:Brain Neoplasms / Q000451:nursing / Q000523:psychology*; D017028:Caregivers / Q000523:psychology*; D004644:Emotions; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011788:Quality of Life / Q000523:psychology*; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires; D055815:Young Adult