Objective: To address the need for brief, reliable, valid, and standardized quality of life (QOL) assessment applicable across neurologic conditions. Methods:Drawing from larger calibrated item banks, we developed short measures (8-9 items each) of 13 different QOL domains across physical, mental, and social health and evaluated their validity and reliability. Three samples were utilized during short form development: general population (Internet-based, n ϭ 2,113); clinical panel (Internet-based, n ϭ 553); and clinical outpatient (clinic-based, n ϭ 581). All short forms are expressed as T scores with a mean of 50 and SD of 10.

Purpose/Objectives To evaluate the safety and efficacy of reflexology, a complementary therapy that applies pressure to specific areas of the feet. Design Longitudinal, randomized clinical trial. Setting Thirteen community-based medical oncology clinics across the midwestern United States. Sample A convenience sample of 385 predominantly Caucasian women with advanced-stage breast cancer receiving chemotherapy and/or hormonal therapy. Methods Following the baseline interview, women were randomized into three primary groups: reflexology (n = 95), lay foot manipulation (LFM) (n = 95), or conventional care (n = 96). Two preliminary reflexology (n = 51) and LFM (n = 48) test groups were used to establish the protocols. Participants were interviewed again postintervention at study weeks 5 and 11. Main Research Variables Breast cancer–specific health-related quality of life (HRQOL), physical functioning, and symptoms. Findings No adverse events were reported. A longitudinal comparison revealed significant improvements in physical functioning for the reflexology group compared to the control group (p = 0.04). Severity of dyspnea was reduced in the reflexology group compared to the control group (p < 0.01) and the LFM group (p = 0.02). No differences were found on breast cancer–specific HRQOL, depressive symptomatology, state anxiety, pain, and nausea. Conclusions Reflexology may be added to existing evidence-based supportive care to improve HRQOL for patients with advanced-stage breast cancer during chemotherapy and/or hormonal therapy. Implications for Nursing Reflexology can be recommended for safety and usefulness in relieving dyspnea and enhancing functional status among women with advanced-stage breast cancer.

Objective: To determine the most critical symptoms in a national myotonic dystrophy type 1 (DM1) population and to identify the modifying factors that have the greatest effect on the severity of these symptoms. Methods:We performed a cross-sectional study of 278 adult patients with DM1 from the national registry of patients with DM1 between April and August 2010. We assessed the prevalence and relative significance of 221 critical DM1 symptoms and 14 disease themes. These symptoms and themes were chosen for evaluation based on prior interviews with patients with DM1. Responses were categorized by age, CTG repeat length, gender, and duration of symptoms.Results: Participants with DM1 provided symptom rating survey responses to address the relative frequency and importance of each DM1 symptom. The symptomatic themes with the highest prevalence in DM1 were problems with hands or arms (93.5%), fatigue (90.8%), myotonia (90.3%), and impaired sleep or daytime sleepiness (87.9%). Participants identified fatigue and limitations in mobility as the symptomatic themes that have the greatest effect on their lives. We found an association between age and the average prevalence of all themes (p Ͻ 0.01) and between CTG repeat length and the average effect of all symptomatic themes on participant lives (p Ͻ 0.01). Conclusions:There are a wide range of symptoms that significantly affect the lives of patients with DM1. These symptoms, some previously underrecognized, have varying levels of importance in the DM1 population and are nonlinearly dependent on patient age and CTG repeat length. Neurology Myotonic dystrophy type 1 (DM1) is a multisystem disorder caused by an unstable trinucleotide repeat expansion on chromosome 19q13.3 in the DMPK gene.1-3 The core features of DM1 are myotonia, weakness, and early-onset cataracts (Ͻ50 years of age). Along with these core features, patients commonly report symptoms related to cognition, gastrointestinal function, sleep, fatigue, mood, ability to swallow, vision, social relations, and physical function. 4 The effect of each symptom on health-related quality of life is unknown. Furthermore, given the multisystem manifestations of DM1, we hypothesize that there are additional underrecognized symptoms that are important to patients and have a critical effect on their health status.

Purpose Most measures of stigma are illness-specific and do not allow for comparisons across conditions. As part of a study of health-related quality of life for people with neurological disorders, our team developed an instrument to assess the stigma for people with chronic illnesses. Methods We based item content on literature review, responses from focus groups, and cognitive interviews. We then administered the items to people with neurological disorders for psychometric testing. Results Five hundred and eleven participants completed items of the stigma scale. Exploratory factor analysis produced 2 factors that were highly correlated (r = 0.81). Confirmatory factor analysis produced high standardized loadings on an overall stigma factor (0.68 to 0.94), with poorer loadings on the two sub-domains (−0.12 to 0.53). These results demonstrated a sufficiently unidimensional scale that corresponded with the bifactor model. Item response theory modeling suggested good model fit, and differential item functioning analyses indicated that the 24-item scale showed potential for measurement equivalence across conditions. Conclusions Our efforts produced a stigma scale that had promising psychometric properties. Further study can provide additional information about the SSCI and its benefit in measuring the impact of stigma across conditions.

Objective The National Institute of Neurological Disorders and Stroke (NINDS) commissioned the Neurology Quality of Life (Neuro-QOL) project to develop a bilingual (English/Spanish), clinically relevant and psychometrically robust HRQL assessment tool. This paper describes the development and calibration of these banks and scales. Design Classical and modern test construction methodologies were used, including input from essential stakeholder groups. Setting An online patient panel testing service and eleven academic medical centers and clinics from across the United States and Puerto Rico that treat major neurological disorders. Participants Adult and pediatric patients representing different neurological disorders specified in this study, proxy respondents for select conditions (stroke and pediatric conditions), and English and Spanish speaking participants from the general population. Main Outcome Measures Multiple generic and condition specific measures used to provide construct validity evidence to new Neuro-QOL tool. Results Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQL in five adult (stroke, multiple sclerosis, Parkinson’s disease, epilepsy, and amyotrophic lateral sclerosis) and two pediatric conditions (epilepsy and muscular dystrophies). Conclusions The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations, and new bank development in health domains not currently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.

No abstract

Background Stroke is a leading cause of long-term disability in the USA; however, we have an incomplete understanding of how stroke affects long-term quality of life. Methods We report here findings from focus groups with 9 long-term stroke survivors and 6 caregivers addressing patients’ post-stroke quality of life. Results Key themes identified by patients were: social support, coping mechanisms, communication, physical functioning and independence. Role changes in patients were important to caregivers. Much of the discussion with patients and caregivers described specific ways in which the stroke altered social relationships. Conclusion These findings are consistent with prior research indicating the importance of social factors to quality of life following stroke. Our findings suggest that measures of stroke-related quality of life should include assessment of social function and social support.

In this study, we set out to determine the preferences, concerns, and attitudes toward fertility preservation of adult male survivors of pediatric cancer and their parents. We conducted 3 focus groups with a total of 15 male survivors of pediatric cancer (age at diagnosis: mean=14, range: 10-20; age at study: mean=35, range: 25-47) and 2 groups with a total of 7 parents of survivors. Grounded theory methodology was used for the identification and analysis of recurrent themes expressed by survivors and their parents in the course of focus group discussions. Themes most frequently expressed by survivors included concern regarding long-term treatment effects and a retrospective desire for fertility impairment to have been discussed when they were originally diagnosed with cancer. Parental themes included the same hindsight desire, as well as reliance upon the treating oncologist for direction in selecting the course of treatment, and an acknowledgment that input from a specialist in fertility preservation would have been beneficial. Although future reproductive potential was not consistently reported as a source of apprehension when diagnosed with cancer, both survivors and their parents noted it to be a paramount concern later in life. Parents and survivors both reported that fertility preservation discussions should be routinely incorporated in the clinical context of a pediatric cancer diagnosis.