CLINICAL STUDY Validation of the Mishel’s uncertainty in illness scale-brain tumor form (MUIS-BT) Lin Lin • Alvina A. Acquaye • Elizabeth Vera-Bolanos • Jennifer E. Cahill • Mark R. Gilbert • Terri S. Armstrong Received: 4 May 2012 / Accepted: 3 September 2012 / Published online: 11 September 2012 Ó Springer Science+Business Media, LLC. 2012 Abstract The Mishel uncertainty in illness scale (MUIS) has been used extensively with other solid tumors throughout the continuum of illness. Interventions to manage uncer- tainty have been shown to improve mood and symptoms. Patients with primary brain tumors (PBT) face uncertainty related to diagnosis, prognosis, symptoms and response. Modifying the MUIS to depict uncertainty in PBT patients will help define this issue and allow for interventions to improve quality of life. Initially, 15 experts reviewed the content validity of the MUIS-brain tumor form (MUIS-BT). Patients diagnosed with PBT then participated in the study to test validity and reliability. Data was collected at one point in time. Six out of 33 items in the original MUIS were modified to better describe PBT patients’ uncertainty. 32 of the 186 patients in the second-stage of the study were newly diag- nosed with PBT, 85 were on treatment, and 69 were fol- lowed-up without active treatment. The validity of the MUIS-BT was demonstrated by its correlations with mood states (P \ 0.01) and symptom severity (P \ 0.01) and interference (P \ 0.01). The MUIS-BT measures four con- structs: ambiguity/inconsistency, unpredictability of disease prognosis, unpredictability of symptoms and other triggers, and complexity. Cronbach’s alphas of the four subscales were 0.90, 0.77, 0.75 and 0.65, respectively. The 33-item MUIS-BT demonstrated adequate select measures of valid- ity and reliability in PBT patients. Based on this initial val- idation and significant correlations with symptom distress and mood states, further understanding of uncertainty and evaluation of measures to help manage patients’ uncertainty can be evaluated which in turn may improve coping and quality of life. Keywords Brain tumors Á Quality of life Á Self-report instruments Á Symptoms Á Uncertainty Introduction Primary brain tumors (PBTs) such as gliomas are a heter- ogenous group of neoplasms associated with significant morbidity and mortality. Glioblastoma multiforme (GBM) is the most common and aggressive malignant glioma, and treatment includes surgical resection, combined radiation and temozolomide chemotherapy and then with monthly cycles of temozolomide for up to one year [1, 2]. Once initial treatment is completed, patients then undergo peri- odic clinical follow-up with MRI to evaluate disease status. At the time of recurrence, repeat tumor resection or che- motherapy may be prescribed. Typically for recurrent tumors, treatment is continued again until tumor progresses or clinical symptoms mandate a change in therapeutic approach. Uncertainty, a person’s lack of ability to determine the meaning of illness-related events [3], pervades the illness trajectory of PBTs. Nearly all patients have disease pro- gression at some point either during or after completing L. Lin Á J. E. Cahill Á T. S. Armstrong Department of Family Health, School of Nursing, The University of Texas Health Science Center at Houston, 6901 Bertner Ave., Houston, TX 77030, USA L. Lin (&) Department of Family Health, School of Nursing, The University of Texas Health Science Center at Houston, 6901 Bertner Ave., Room 795, Houston, TX 77030, USA e-mail: lin.lin@uth.tmc.edu A. A. Acquaye Á E. Vera-Bolanos Á M. R. Gilbert Á T. S. Armstrong Department of Neuro-Oncology, The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA 123 J Neurooncol (2012) 110:293–300 DOI 10.1007/s11060-012-0971-8