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Presenter: Lin Lin, PhD, RN Department of Family Health UTHealth School of Nursing

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Elizabeth W. Quinn Oncology Research Award The University of Texas Health Science Center at Houston, School of Nursing Use of the Modified Mishel Uncertainty in Illness Scale (MUIS) in Patients with Primary Brain Tumors (PI: Lin Lin) (2009-2010) Dean's Research Award The University of Texas Health Science Center at Houston, School of Nursing Develop an Uncertainty Management Intervention for Patients with Primary Brain Tumors (PI: Lin Lin) (2011-2012)

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Uncertainty is defined as the inability to determine the meaning of illness-related events. Uncertainty is a cognitive state created when the individual cannot adequately structure or categorize an illness event because of insufficient cues. Uncertainty exists in illness situations that are ambiguous, complex, unpredictable, and when information is unavailable or inconsistent. (Mishel, 1988; Mishel & Clayton, 2008)

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Mishel (1988)

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Tumors that begin in brain tissue are known as primary tumors of the brain. The most common primary brain tumors are gliomas. A grade IV astrocytoma is usually called a glioblastoma multiforme (GBM). Overall, the chance that a person will develop a malignant tumor of the brain or spinal cord in his or her lifetime is less than 1% (about 1 in 150 for a man and 1 in 185 for a woman). (ACS, 2012)

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Type of Tumor 5-Year Relative Survival Rate Age 20-4445-5455-64 Low-grade (diffuse) astrocytoma 59%40%NA* Anaplastic astrocytoma 49%29%8% Glioblastoma 16%6%3% Oligodendroglioma 85%77%65% Anaplastic oligodendroglioma 66%53%33% Ependymoma/anaplastic ependymoma 91%85%84%

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The treatment options for brain and spinal cord tumors depend on several factors, including the type and location of the tumor and how far it has grown or spread. Surgery is often the first treatment when it can be done. Some tumors (e.g., glioblastomas) are not curable by surgery. After maximal safe surgical resection, chemotherapy wafers may be placed in or near any remaining tumor at this time. Radiation therapy is then given, usually along with or followed by chemotherapy if the person's health allows. Temozolomide is the chemotherapy drug most commonly used to treat these tumors. It is often given along with radiation therapy, as it appears to make it more effective. It is then continued after the radiation is completed. (ACS, 2012)

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Cancer recurrence Progressed/controlled Response to treatment: pseudoprogression or pseudoresponse Effects of the tumor and its treatment http://www.cancer.org/Cancer/BrainCNSTumorsinAdults /DetailedGuide/brain-and-spinal-cord-tumors-in- adults-after-follow-up

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(N=186) Gender Employment Status Male99 (53%) Employed (part-time, full-time, homemaker)94 (52%) Female87 (47%) Employed (sick leave, disability)24 (13%) Ethnic Background Retired18 (10%) Asian or Pacific Islander 11 (6%) Unemployed due to diagnosis of tumor31 (17%) Black10 (6%) Unemployed prior to diagnosis of tumor, student13 (7%) White 149 (86%) Level of Education Other 3 (2%) Some high school or high school34 (18%) Hispanic Some college46 (25%) Yes172 (93%) College graduate53 (29%) No13 (8%) Post graduate/advanced degree53 (29%) Marital Status Divorced, Separated, Widowed19 (10%) Married139 (75%) Single28 (15%)

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Recurrence(N=186) Yes74 (40%) No112 (60%) Patient Groups Newly Diagnosed32 (17%) On treatment with MRI64 (34%) On treatment without MRI21 (11%) Follow-up without active treatment69 (37%) Tumor Grade Grade I3 (2%) Grade II38 (21%) Grade III59 (32%) Grade IV (69 GBM)84 (46%) Location Left103 (55%) Right 78 (42%) Midline5 (3%) KPS 8036 (20%) 90150 (81%)

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33-item 4-factors Ambiguity (13 items) Inconsistency (7 items) Complexity (7 items) Unpredictability (5 items) 2-factors Ambiguity (16 items) Complexity (12 items)

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Content Validity Construct Validity Reliability Feasibility Journal of Neuro-Oncology

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Uncertainty was significantly correlated with symptom severity (p