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Living with a brain tumor-patient and caregiver needs

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-OncologyUniversity of California, San Francisco

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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

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OBJECTIVES

1) Assess the needs of brain tumor patients and their caregivers2) Assess how well needs were met3) Identify areas to improve health services ad resources to both patients and caregivers4) Integrate changes in the UCSF Neuro-Oncology program to better address the needs identified

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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

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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)

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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

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RESULTS:Participant Characteristics

Patients (n=83) Caregivers (n=83)

Age (years) Median Range

4923-80

5023-78

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 (0.02-28)

0.8 years(0.02-14.8)

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RESULTS: Participants80 % of caregivers were either a spouse or a

partner of the patient87% of the caregivers lived with the patientFor the majority of patients, their tumor status

was “stable” and about 55% were receiving chemotherapy

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RESULTS:OverallThe 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

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Unmet Areas for both patients and caregivers

Q.1 Q.2 Q.3 Q.4 Q.5 Q.6

% Importance%Unsatisfied

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04

06

08

0

Patient Needs

Q.1 Q.2 Q.3 Q.4 Q.5 Q.6

02

04

06

08

0

Caregiver Needs

DST HCP DLF

Causes of Brain Cancer

Pts. Lower Energy

Healthy foods

Telephone Access HCP

Insurance Coverage

Employer Support

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Unmet Caregiver Needs

Symptom, treatment, and pain management

HCP contact

Support ,FMLA, financial services

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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)

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Comments from participantsWe included a “comment” section for participants to indicate additional concerns. Some of these included needing more information about:1) Physical Therapy/Occupational

Therapy2) Holistic treatments3) Mechanism of current treatment4) Applying for social security

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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

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SUMMARY OF RESULTSCaregivers 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

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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

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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

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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.

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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

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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.

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AcknowledgmentsPatients and caregiversAmerican Brain Tumor AssociationNational Brain Tumor SocietyRandi Murray