1 R. Parvataneni, M-Y. Polley, T. Urquhart, M. Prados, N. Butowski, R. Liu, K. Michaud, M. Page, J. Rabbitt, A.Fedoroff, E. Hsieh, V. Kivett, J. Foft, R. DeBoer, K. Wiens, S. Chang Division of Neuro-Oncology University of California, San Francisco

2 INTRODUCTION  Understanding and improving QOL in brain tumor patients is important  In addition to the patient and members of the health care team, caregivers play an integral role in the treatment plan  Caregivers and patients are likely to have different needs  Caregivers of brain tumor patients face unique challenges

3 OBJECTIVES 1) Assess the needs of brain tumor patients and their caregivers 2) Assess how well needs were met 3) Identify areas to improve health services ad resources to both patients and caregivers 4) Integrate changes in the UCSF Neuro- Oncology program to better address the needs identified

4 METHODS: Participant Eligibility  Primary brain tumor patients and their caregivers were asked to participate  Professional caregivers were excluded  Patients and caregivers were English speaking and over the age of 18  Potential participants were screened in clinic  Informed consent was obtained from all participants  IRB approved protocol

5 METHODS:Questionnaires  Questionnaires were tailored for patients and caregivers  Questions were extracted from the Canadian Cancer Society survey and additional questions thought to be relevant incorporated  Three domains: DST (Disease, Symptoms and Treatment), HCP (Health Care Provider), DLF (Daily Living and Finances)  Emotional needs (EN) were only explored in caregivers  Each need was evaluated for importance and the degree of satisfaction (Likert scale 1-5)

6 METHODS:Analysis  We were specifically interested in the differences in needs expressed by patient and caregiver  We were also interested in unmet areas of need for both patients and caregivers so that we could implement change to better address these needs

7 RESULTS: Participant Characteristics Patients (n=83)Caregivers (n=83) Age (years) Median Range Sex Male (%) Female (%) 52 (63) 31(37) 22 (27) 60(73) Tumor: Grade II (%) Grade III (%) Grade IV (%) Unknown (%) 22 (27) 25 (31) 33 (40) 3 (2) 18 (21) 24 (29) 41 (50) Median time from diagnosis 1.6 years ( ) 0.8 years ( )

8 RESULTS: Participants 80 % of caregivers were either a spouse or a partner of the patient 87% of the caregivers lived with the patient For the majority of patients, their tumor status was “stable” and about 55% were receiving chemotherapy

9 RESULTS:Overall The single item that was identified by both caregivers and patients as very important is their need to feel respected by their health care provider (73% of patients and 77% of caregivers, respectively). Almost all respondents felt that this need is well met (97% patients and 97% caregivers) Both patients and caregivers also felt that information to make treatment decisions was important and most were satisfied with this need being met

10 Unmet Areas for both patients and caregivers Q.1Q.2Q.3Q.4Q.5Q.6 % Importance %Unsatisfied Patient Needs Q.1Q.2Q.3Q.4Q.5Q Caregiver Needs DST HCP DLF Causes of Brain Cancer Pts. Lower Energy Healthy foods Telephone Access HCP Insurance Coverage Employer Support

11 Unmet Caregiver Needs Symptom, treatment, and pain management HCP contact Support,FMLA, financial services

12 Unmet Caregiver emotional needs Opportunity to talk to someone with a similar experience (52/70) Finding ways to help maintain patient’s independence(72/50) Finding best way to reassure and comfort (81/49) Being able to speak openly with the patient about cancer (76/29) Coping with physical and emotional changes of the patient (81/58) Coping with changes in social, work and family life (62/60) Dealing with reaction to the illness of family and friends (58/46) Accepting the cancer diagnosis and uncertainty(84/58) Support dealing with anxiety and stress (64/63)

13 Comments from participants We included a “comment” section for participants to indicate additional concerns. Some of these included needing more information about: 1) Physical Therapy/Occupational Therapy 2) Holistic treatments 3) Mechanism of current treatment 4) Applying for social security

14 SUMMARY OF RESULTS Information on treatment decisions and relationship with health care provider were identified as the most important aspects for patients and caregivers There were several areas of shared unmet needs for patients and caregivers that included understanding the cause of brain tumors, dealing with low energy, nutrition, access to the HCP, medical insurance coverage and employer support

15 SUMMARY OF RESULTS Caregivers had more unmet needs that span knowledge about symptoms and side effects of treatment, support services and financial issues Many caregivers had significant emotional needs that were not addressed

16 CONCLUSIONS  This study provided valuable insight into the identification of needs and avenues to improve services for brain tumor patients and their caregivers  Clear need and value for support groups such as the ABTA, BBTA and IBTA to provide information about the disease process and side effects of treatment and to address “sharing of experiences”  Caregivers experience their highest amount of burden in the realm of emotional needs

17 Changes Implemented to Address unmet needs  We have developed a questionnaire that is given to all patients and caregivers specifically asking about needs for a social worker, nutritionist or a neuropsychologist so we can make appropriate and timely referrals  We have a social worker assigned to our team who specifically addresses support services, medical insurance, financial and employer issues  We have a neuropsychologist in the department and also make referrals to the psycho-oncology team at the cancer center

18 Changes Implemented to Address unmet needs  We have instituted a “caregiver support group” in conjunction with the brain tumor support group that gives caregivers a forum to discuss their needs and challenges  A “caregiving alliance” has been formed at UCSF that involves neuroscience colleagues in areas of dementia, traumatic brain injury and epilepsy to develop synergistic efforts both in education and access to resources. A one day symposium for caregivers of patients with neurological illness is planned for 2013.

19 Research efforts to Address unmet needs  One of the major research efforts in our group is neuro-epidemiology- trying to understand what causes brain tumors. Most patients agree to participate in this study  We are collaborating with the reproductive endocrine team to assess reproductive health in young female patients with brain tumors

20 Planned changes  Through the generous support of one of the caregivers of a patient, we are hoping to implement a program that integrates the caregiver as part of the team  The plan will allow for caregiver input about specific aspects of the individual patient’s course to optimize care and quality of life.

21 Acknowledgments Patients and caregivers American Brain Tumor Association National Brain Tumor Society Randi Murray