Illness uncertainty in breast cancer patients: Validation of the 5-item short form of the Mishel Uncertainty in Illness Scale
Introduction
In Norway, breast cancer comprises more than 20% of all female cancers, with an incidence indicating that about one in 12 women develop the disease before the age of 75 (Hofvind et al., 2013, Larønningen et al., 2013). The 5 year survival rate of breast cancer is increasing. Reduced use of postmenopausal hormone replacement therapy (HRT) and mammographic screening programs have been argued as the main reason as to why this is the case (Hofvind et al., 2013, Larønningen et al., 2013). At the end of year 2011, about 38500 women in Norway were either under active treatment or had been treated for breast cancer (Hofvind et al., 2013, Larønningen et al., 2013).
Living with the uncertainty of breast cancer during the diagnosis period and after completed treatment may present a life-long challenge because of the chronic nature of the disease (Mishel, 1999). Patients report exacerbation of symptoms and fear about disease progression before mammogram checkup, and studies show that symptom unpredictability and an unknown future have been identified as causes of uncertainty (Gill et al., 2004, Mast, 1998). Uncertainty is defined as “the inability to determine the meaning of illness-related events” (Mishel, 1981). The condition reflects neither a desired nor a dreaded state until the implications of the uncertainty are determined (Mishel, 1988). High uncertainty is associated with reduced ability to process new information, predict outcomes, and adapt to the cancer diagnosis (Mishel, 1990). Illness uncertainty and fear of disease progression affect psychosocial adjustment and quality of life (Knobf, 2007, Mast, 1995, Sammarco, 2003). A high degree of uncertainty is shown several years after treatment (Decker et al., 2007, Hall et al., 2014), and this may be one of the greatest challenges for breast cancer survivors (McCormick, 2002, Wonghongkul et al., 2000). Although factors that trigger uncertainty may change over time, distressing symptoms and fear of recurrence are strongly associated with increased illness uncertainty and emotional distress (Decker et al., 2007, Hall et al., 2014).
Information from health workers on cause, intensity, and duration of symptoms have been reported to be a major factor in reducing illness uncertainty (Mishel, 1997).
The original Mishel Uncertainty in Illness Scale (MUIS or MUIS-A) from 1981 consisted of 33 statements and examined uncertainty in hospitalized adult patients (Mishel, 1981). The scale was later modified to evaluate the perception of uncertainty in illness related to four factors; ambiguity, complexity, unpredictability, and inconsistent information through the entire disease trajectory (Mishel, 1990). Furthermore, the modified scale measured unremitting uncertainty about life changes in cancer patients during the diagnostic period, treatment phases, and in long term cancer survivors (Mishel, 1990). In addition, several other versions of the MUIS have been developed for different contexts (Mishel, 1983). For non-hospitalized adults, a 23 item community version has been established (MUIS-C) (Mishel, 1997), and there is a scale that measurers the experience of uncertainty among parents with a sick child, the 31 item Parents' Perception of Uncertainty in Illness Scale (PSSU) (Stewart et al., 2010). Furthermore, there are studies using 23 and 17 questions of the original MUIS (Liao et al., 2008, Wonghongkul et al., 2000).
In 2013, a 5 item short form of MUIS was available from The University of North Carolina at Chapel Hill web site
(https://nursing.unc.edu/files/2012/12/mishel_uncertainty_scales.pdf).
The 5 items represent the factors ambiguity; concerning the state of the illness, and complexity; regarding treatment and system of care, the controllability of the illness. When the 5 item scale was established, we can only assume that the factors ambiguity and complexity were chosen in the 5 item short form of MUIS because they have demonstrated a more consistent reliability (Neville, 1998), and are shown to be important in cancer patients (Mishel, 1983). As far as we know, the short form of MUIS was established in 2012, but never used in any study.
Despite the importance of the concept of uncertainty in illness in cancer patients, no reliable and valid tool exists in Norwegian. Using the original MUIS cross –culturally may affect the validity of the scale, which has shown to be the case in Asian and Nordic studies (Hallberg and Erlandsson, 1991, Mishel, 1991). Also, the type of alpha coefficient used in the reliability test in these versions of the scale may affect the validation. In scales with ordinal Likert-type responses, the ordinal alpha has shown to estimate reliability more accurately than the Cronbach's alpha, especially in the short form scales (Gadermann et al., 2012).
An applicable short form of the MUIS might be easier and more suitable to use than the long version of the scale, when it comes to identifying patients which need additional health support. Therefore, the purpose of this study was to translate and test the psychometrics of a Norwegian short form of the MUIS (SF-MUIS), and examine the uncertainty in illness in breast cancer women.
Section snippets
Patients and settings
Between January 2012 and June 2013, 281consecutive patients above 18 years of age diagnosed with breast cancer, at two university hospitals, were eligible for inclusion in the study. All the patients had to be in curative treatment for breast cancer (surgery, chemotherapy, radiation, and endocrine treatment), and able to speak, read and write Norwegian. Pre-operatively the patients were telephoned, informed about the study, and asked to participate. Basically all agreed to participate and were
Results
Mean age of the female patients was 57.9 years, ranging from 34 to 81 years (Table 1). One hundred and twenty (57.4%) were treated with chemo-therapy, 128 (61.2%) with radiotherapy, and 147 (70.3%) received hormonal therapy (Table 1). Mean score (95% CI) for SF-MUIS was 11.7 (11.3–12.2). The women in group C reported significantly more uncertainty [12.7 (12.0–13.5)] than the women in group A [11.0 (10.2–11.9)] and group B [11.1 (10.4–11.8)], F (2,206) = 7.20, P = <0.0001. The results of the
Discussion
Our results indicate that the 5 items SF-MUIS for assessment of illness uncertainty performed acceptably in women with breast cancer, and revealed a moderate degree of uncertainty among the patients. The translated version of the SF-MUIS was found to be understandable and giving meaningful answers. The ordinal alpha was satisfactory, and the scale correlated significantly with anxiety and depression, quality of information, emotional well-being and social support; factors that are well known to
Conflict of interest
The authors declare no commercial or financial conflict of interest.
Acknowledgments
The authors wish to thank the Department of Breast and Endocrine surgery at Haukeland University Hospital and Stavanger University hospital, and specifically Sissel Vevle and Eli Bøhme for their dedicated work in collection patient data. We also thank Birgitta Gripsrud for participant in the translation process, and Barbara McIntorsh and Alice Lind for back-translating the SF-MUIS and information given from Norwegian to English. The corresponding author is supported by grants from Haukeland
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