Background:The 29-item Multiple Sclerosis Impact Scale (MSIS-29) was developed to examine the impact of multiple sclerosis (MS) on physical and psychological functioning from a patient’s perspective.Objective:To determine the responder definition (RD) of the MSIS-29 physical impact subscale (PHYS) in a group of patients with relapsing–remitting MS (RRMS) participating in a clinical trial.Methods:Data from the SELECT trial comparing daclizumab high-yield process with placebo in patients with RRMS were used. Physical function was evaluated in SELECT using three patient-reported outcomes measures and the Expanded Disability Status Scale (EDSS). Anchor- and distribution-based methods were used to identify an RD for the MSIS-29.Results:Results across the anchor-based approach suggested MSIS-29 PHYS RD values of 6.91 (mean), 7.14 (median) and 7.50 (mode). Distribution-based RD estimates ranged from 6.24 to 10.40. An RD of 7.50 was selected as the most appropriate threshold for physical worsening based on corresponding changes in the EDSS (primary anchor of interest).Conclusion:These findings indicate that a ≥7.50 point worsening on the MSIS-29 PHYS is a reasonable and practical threshold for identifying patients with RRMS who have experienced a clinically significant change in the physical impact of MS.
The study highlights socioeconomic factors to be significant to the stigma and illness uncertainty experiences in SCD. Efforts by healthcare workers to reduce patient illness uncertainty may have additional impact, reducing their stigma.
Hermansky-Pudlak Syndrome is a rare form of albinism, affecting approximately one in 500,000 to one in 1,000,000 non-Hispanic individuals. The syndrome is more commonly found in Hispanics, where one in 18,00 individuals in Northwestern Puerto Rico are impacted. Because of the rarity of this chronic condition, patients often face challenges in their ability to cope with the diagnosis. A phenomenological study was conducted to explore the experience of individuals with this rare genetic disease. A purposive sample of adults between the ages of 20 and 49 diagnosed with Hermansky-Pudlak Syndrome was interviewed (N = 23). The majority (83%) were female. Data analysis resulted in the emergence of themes related to long road to diagnosis, learning to move forward, burden of being the expert, and survival through belonging to the HPS community.
Research exploring the parents’ experience of their child undergoing gender transition is almost nonexistent. However, as the number of individuals who identify as transgender increases, gender identity will continue to evolve; therefore, supporting families of these individuals is paramount. Parents of transgender children were interviewed and yielded five themes: (a) It Rocks Your World; (b) Dancing Around in a Way that Doesn’t Distance; (c) Your Child Is Still Your Child; (d) Worrying About the Future; and (e) Transformational: Finally an Answer. These themes begin to identify the complex nature and struggles parents face as they encounter the emotional and physical aspects of their child’s gender transition. The findings raise awareness of the parents’ perspective, provide a better understanding of the complex family issues that occur, and provide nursing suggestions on how to continue to work to facilitate “healthy families” and promote cultural sensitivity.
There is a growing concern about violent and destructive behaviors of youth that require intervention by juvenile justice and youth-serving agencies. This concern has led many to conclude that schools and community agencies must increase efforts to prevent juvenile delinquency and to provide programs that will facilitate rehabilitation, education, and vocational training for youth already involved. A clear understanding of the nature and range of behaviors that result in juvenile crime is needed in order to develop programs and interventions that can be expected to lead to beneficial changes for youth and for society as a whole. The purpose of this article is to describe the relationship between school behaviors and youth characteristics in school (e.g., discipline referrals, teacher nominations, nomothetic ratings) and referrals to juvenile authorities (e.g., illegal behaviors). We describe a strategy of using teacher nominations, school discipline referrals, and community arrest data to predict delinquent and violent behavior in youth. We outline data from a group of socially maladjusted middle school youth to illustrate the relationship between the two data sources and recommendations for identification and treatment of youth at risk for delinquency and antisocial behavior.
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