The focus of Neuro-Oncology at UCSF has traditionally been on improving therapeutic strategies to treat brain tumor patients. In addition to discovering and improving treatment, we recognize the importance to address the needs that affect the quality of life (QOL) in patients and their caregivers across the span of the illness. This study was undertaken to assess which needs were perceived by patients and caregivers as important and how well the needs were met to identify resources that could improve this aspect of care.
The incidence of primary brain tumors in the United States (US) is about 17,000 per year, with a case fatality of about 10,000 per year. Gliomas make up 80% of primary brain tumors and account for significant mortality. Gliomas can be classified as either low-grade (LGG) or high-grade (HGG). Despite medical management with surgery and irradiation the median 10-year survival rates for LGG range from 17 to 49%. HGG are extremely aggressive tumors and even with rigorous treatment, the median survival ranges from 1 to 3 years after initial diagnosis [1
]. Due to the shorter life expectancy in these populations, understanding and improving the QOL is important to patients and their caregivers. Moreover, several studies have shown that improved QOL is associated with prolonged survival in patients with head and neck cancer [2
]. Therefore, QOL is an imperative area that should not be overlooked in the disease management of cancer.
Many investigations have been undertaken to explore the multi-dimensional QOL of brain tumor patients. The instruments most commonly adopted by investigators are the FACT–BR (Functional Assessment of Cancer Therapy–Brain) [4
] and the QLQ-BN20 [5
]. The FACT–BR is a validated instrument and provides a comprehensive assessment of the emotional, social, psychological, and cognitive aspects of a brain tumor patient’s life. The QLQ-BN20 addresses symptoms that are specific to brain cancer or its treatment. However, the FACT–BR and QLQ-BN20 do not examine the many other issues patients and caregivers are struggling with such as their disease management, healthcare and daily living needs.
Caregivers of brain tumor patients face unique challenges among caregivers of cancer patients [6
]. In addition to cancer-related issues, they are routinely confronted with neuro-cognitive and neuropsychological issues prevalent among brain tumor patients such as alterations in functional status, cognitive status, and behavioral changes [7
]. To date, little research has explored the specific needs of the caregivers of brain tumor patients, as most research is focused on improving patient outcomes (e.g., symptom management and QOL). Sherwood et al. [7
] developed a conceptual model for providing care to a person with a primary malignant brain tumor. Their model described factors that may affect the caregiver’s stress in response to this unique care situation. A cross sectional study performed by Sherwood et al. [6
] identified that a patient’s neuropsychiatric status consistently affected caregivers’ depressive symptoms and burden. Schubart et al. [8
] interviewed caregivers of brain tumor patients about their challenges and provided recommendations for improving the delivery of information about the patient’s diagnosis and treatment, enhancing communication among patients, families, and health care providers, and providing psychosocial support for family caregivers. Northouse et al. [9
] showed the following interventions: psychoeducational, skills training, and therapeutic counseling with caregivers of cancer patients significantly reduced caregiver burden, improved caregivers’ ability to cope, increased self-efficacy and QOL
A study performed in Australia used the Supportive Care Needs Survey (SCNS-34) to identify the unmet supportive care needs of brain tumor patient and caregivers. This study found that patients frequently reported that they required support to overcome fatigue, uncertainty about the future and not being able to do the things they used to do [10
]. Caregivers wanted help dealing with the following issues: their fear about the patient’s mental or physical deterioration, the impact that caregiving had on their own lives, and the ability to reduce stress in the patient’s life [10
]. Leavitt et al. [11
] described the experiences and needs of brain tumor patients who participated in support group meetings. They reported that support groups provided a specific therapeutic forum for patients with brain tumors and their families, especially regarding the difficulties of survival and maintaining quality of life after initial treatment.
This study was undertaken at UCSF with the aim to survey important issues of QOL thought to impact the lives of brain tumor patients and their caregivers. The targeted population consists of brain tumor patients of mixed types as well as their caregivers. In addition to members of the health care team, caregivers play an integral role in the treatment process of the patients. It is our hope that the knowledge gained from this study will help UCSF Neuro-Oncology and other clinics prioritize health services to focus on the important QOL aspects of brain tumor patients and their caregivers.