Content Validation of the ATTR Amyloidosis Patient Symptom Survey: Findings from Patient and Clinician Cognitive Debriefing Interviews.

PURPOSE: Amyloid transthyretin (ATTR) amyloidosis is a rare, progressive, and fatal disease. The ATTR Patient Symptom Survey (ATTR-PSS) was previously developed through literature review and concept elicitation input from clinicians and patients and revised after evaluation by a patient focus group. This study further evaluated the content validity of the ATTR-PSS through qualitative cognitive debriefing interviews with clinicians and patients. METHODS: Seven clinicians and 10 patients with ATTR amyloidosis were interviewed individually regarding their overall impressions, the clarity and appropriateness of the survey, relevance of concepts measured, and comprehensiveness and comprehensibility of items and response choice sets. RESULTS: Clinicians acknowledged the usefulness of the ATTR-PSS in research and clinical settings. They suggested minor modifications to the survey instructions, the addition of 3 symptoms, and the transfer of 10 conditions from the symptom list to 2 separate items. Patients found the ATTR-PSS to be easy to complete and relevant to their experiences. Their feedback resulted in modification to instruction text, edits to the description of 4 symptoms, removal of 1 symptom, and addition of 2 diagnoses. CONCLUSION: The findings support the content validity of the ATTR-PSS as an appropriate measure of symptom frequency, severity, and impact in patients with wild-type and hereditary ATTR amyloidosis.

Pain Self-Management for Veterans: Development and Pilot Test of a Stage-Based Mobile-Optimized Intervention.

BACKGROUND: Chronic pain is a significant public health burden affecting more Americans than cardiovascular disease, diabetes, and cancer combined. Veterans are disproportionately affected by chronic pain. Among previously deployed soldiers and veterans, the prevalence of chronic pain is estimated between 44% and 60%. OBJECTIVE: The objective of this research was to develop and pilot-test Health eRide: Your Journey to Managing Pain, a mobile pain self-management program for chronic musculoskeletal pain for veterans. Based on the transtheoretical model of behavior change, the intervention is tailored to veterans' stage of change for adopting healthy strategies for pain self-management and their preferred strategies. It also addresses stress management and healthy sleep, two components of promising integrated treatments for veterans with pain and co-occurring conditions, including posttraumatic stress disorder (PTSD) and traumatic brain injury. In addition, Health eRide leverages gaming principles, text messaging (short message service, SMS), and social networking to increase engagement and retention. METHODS: Pilot test participants were 69 veterans recruited in-person and by mail at a Veterans Health Administration facility, by community outreach, and by a Web-based survey company. Participants completed a mobile-delivered baseline assessment and Health eRide intervention session. During the next 30 days, they had access to a Personal Activity Center with additional stage-matched activities and information and had the option of receiving tailored text messages. Pre-post assessments, administered at baseline and the 30-day follow-up, included measures of pain, pain impact, use of pain self-management strategies, PTSD, and percentage in the Action or Maintenance stage for adopting pain self-management, managing stress, and practicing healthy sleep habits. Global impressions of change and program acceptability and usability were also assessed at follow-up. RESULTS: Among the 44 veterans who completed the 30-day post assessment, there were statistically significant pre-post reductions in pain (P<.001) and pain impact (P<.001); there was some reduction in symptoms of PTSD (P=.05). There were significant pre-post increases in the percentage of participants in the Action or Maintenance stage for adopting pain self-management (P=.01) and for managing stress (P<.001) but not for practicing healthy sleep habits (P=.11). The global impressions of change measure showed that a majority had experienced some level of improvement. User ratings of acceptability were quite high; ratings of usability fell slightly below the mean for digital programs. CONCLUSIONS: Preliminary data demonstrate the potential impact of the Health eRide program for chronic musculoskeletal pain for veterans. The results underscore that simultaneously addressing other behaviors may be a promising approach to managing pain and comorbid conditions. Additional formative research is required to complete development of the Health eRide program and to address areas of usability requiring improvement. A randomized trial with longer follow-up is needed to demonstrate the program's long-term effects on pain and pain self-management.

Racial disparities in health outcomes after spinal cord injury: mediating effects of education and income.

OBJECTIVE: The purpose of this study was to investigate heath disparities as a function of race and gender and the extent to which socioeconomic factors mediate disparities among participants with spinal cord injury. DESIGN: Survey methodology. Cross-sectional data. SETTING: A large Southeastern specialty hospital. PARTICIPANTS: There were 1342 participants in the current analysis, all of whom were identified from patient records. There were 3 inclusion criteria: (a) traumatic SCI, (b) at least 18 years of age at the time of study, and (c) injury duration of more than 1 year. MAIN OUTCOME MEASURES: Six outcomes were measured, including 3 general outcomes (self-ratings, days impacted by poor health, days impacted by poor mental health) and 3 that reflect utilization of services (hospitalizations, days hospitalized, and nonroutine physician visits in the past 2 years). RESULTS: RESULTS of multivariate analysis of variance (MANOVA) indicated significant main effects for both race and gender. Follow-up tests identified racial disparities on 3 of the 6 outcomes, whereas gender disparities were observed for a single outcome. Years of education and household income mediated interrelationships between race and health (but not gender) as racial disparities disappeared after consideration of these factors. CONCLUSIONS: These findings suggest the need to work more diligently to promote better health outcomes among African Americans and to further investigate how socioeconomic factors and access to health care related to diminished health outcomes among African Americans with spinal cord injury.

Subjective well-being among African-Americans with spinal cord injury: an exploratory study between men and women.

OBJECTIVE: The purpose of this study was to identify gender differences in subjective well-being among 309 African-American participants with spinal cord injury (SCI). DESIGN: Cross-sectional. SETTING: A Southeastern specialty hospital. PARTICIPANTS: There were a total of 309 participants, all of whom were African-Americans. All participants had traumatic SCI, were at least 18 years or older at the time of the study, and a minimum of one year had passed since SCI onset. MAIN OUTCOME MEASURES: Measures of subjective well-being included the Life Situation Questionnaire--Revised, Purpose in Life scale, and the Older Adult Health and Mood Questionnaire. RESULTS: Multiple gender differences were observed, with women reporting higher scores on depressive symptoms and negative affect, but lower scores on purpose in life. Other significant findings were observed related to self-reported problems, with men reporting greater problems with pressure ulcers and sexual issues and women reporting greater problems in several areas related to coping and affect. The only gender difference in life satisfaction indicated greater satisfaction with sex life among women. CONCLUSION: It is clear from the findings that differences do exist among male and female African-Americans with spinal cord injuries. More research is needed to definitively outline differences.

Breast and gynecologic health-screening behaviors among 191 women with spinal cord injuries.

OBJECTIVE: The purpose of this study was to advance the understanding of preventive health behaviors of women with spinal cord injury (SCI) by comparing the frequency of preventive health behaviors (a) between women with SCI and women in the general population, and (b) among women with SCI as a function of race/ethnicity and socioeconomic status (SES). DESIGN: Telephone interviews. PARTICIPANTS: 191 women with SCI who had been treated at 1 of 4 Model SCI Systems hospitals. The sample included 66 white women, 59 African American women, 22 American Indian women, and 44 Hispanic women. MAIN OUTCOME MEASURE: The Behavioral Risk Factor Surveillance System. RESULTS: Study participants reported significant differences in their frequency of either mammograms or Pap smears when compared with the general population. However, no significant differences were found among study participants when rates were compared by race/ethnicity to the general population. Also, no differences were found among the women with SCI as a function of race/ethnicity or income level. CONCLUSION: The results are encouraging, because no deficits in preventive health care were identified among women with SCI as a function of race/ethnicity or SES.