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Presenter: Lin Lin, PhD, RN Department of Family Health UTHealth School of Nursing 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) 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) Mishel (1988) 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) 5-Year Relative Survival Rate Age Type of Tumor 20-44 45-54 55-64 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% (ACS, 2012) 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) 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-inadults-after-follow-up (N=186) Employment Status Gender Male 99 (53%) Employed (part-time, full-time, homemaker) 94 (52%) Female 87 (47%) Employed (sick leave, disability) 24 (13%) Retired 18 (10%) 31 (17%) Ethnic Background Asian or Pacific Islander 11 (6%) Unemployed due to diagnosis of tumor Black 10 (6%) Unemployed prior to diagnosis of tumor, student White Other 149 (86%) Level of Education 3 (2%) Hispanic Yes No 172 (93%) 13 (8%) Marital Status Divorced, Separated, Widowed Married Single 13 (7%) 19 (10%) 139 (75%) 28 (15%) Some high school or high school 34 (18%) Some college 46 (25%) College graduate 53 (29%) Post graduate/advanced degree 53 (29%) Recurrence Yes No Patient Groups Newly Diagnosed On treatment with MRI On treatment without MRI Follow-up without active treatment Tumor Grade Grade I Grade II Grade III Grade IV (69 GBM) Location Left Right Midline KPS ≤80 ≥90 (N=186) 74 (40%) 112 (60%) 32 (17%) 64 (34%) 21 (11%) 69 (37%) 3 (2%) 38 (21%) 59 (32%) 84 (46%) 103 (55%) 78 (42%) 5 (3%) 36 (20%) 150 (81%) 33-item 4-factors Ambiguity (13 items) Inconsistency (7 items) Complexity (7 items) Unpredictability (5 items) 2-factors Ambiguity (16 items) Complexity (12 items) Content Validity Construct Validity Reliability Feasibility Journal of Neuro-Oncology Uncertainty was significantly correlated with symptom severity (p<.01) and symptom interference (p<.01). Uncertainty was significantly correlated with symptom subscales of affective (p<.01), cognitive (p<.01), focal neurological deficit (p<.01), constitutional, generalized, and GIrelated symptoms (all with p<.01). MUIS overall score inter- symptom cogMDASI-BT overall ference severity affective nitive neurotx general/ logic related disease Pearson ** ** Correlation .465 .504 .394** .395** .275** .273** .272** .357** .227** Sig. (2-tailed) .000 .000 .001 .001 .001 .000 .000 .000 GI .005 Uncertainty was positively correlated to five POMS-SF subscales, anger, confusion, depression, fatigue, and tension (all with p<.01). Uncertainty was negatively correlated with vigor subscale (p<.01). POMS Pearson MUIS Correlation overall score Sig. (2-tailed) depression vigor confusion tense anger fatigue .441** -.412** .500** .520** .387** .298** .000 .000 .000 .000 .000 .000 ChiSquare SRMR RMSEA Estimate RMSEA 90% CI CFI TLI Tension 0.43 0.99 0.99 0.03 0.01 0.000-0.069 Anger 0.57 1.00 1.00 0.03 0.00 0.000-0.059 Depression 0.28 0.99 0.99 0.04 0.03 0.000-0.074 Fatigue 0.21 0.99 0.98 0.04 0.04 0.000-0.079 Confusion 0.26 0.99 0.99 0.04 0.03 0.000-0.075 Model CFI= Comparative Fit Index TLI= Tucker Lewis Fit Index SRMR=Standardized Root Mean Square Residual RMSEA= Root Mean Square Error of Approximation 90% CI= 90 Percent Confidence Interval Problem solving/Information seeking Cognitive reframing Patient-provider communication Symptom management Hui-Hsun-Chiang, MS, RN; Alvina A. Acquaye, MS; Elizabeth Vera-Bolanos, MS; Jennifer E. Cahill, MSN, RN; Mark R. Gilbert, MD; Terri S. Armstrong, PhD, ANP-BC, FAANP