Examining Participation among Persons with Spinal Cord Injuries and Disorders Using Photovoice

Participation is a significant rehabilitation outcome for individuals with spinal cord injury and/or disorder (SCI/D), yet few qualitative studies have described the social aspect of disability and community participation. We used the photovoice methodology to explore perceptions and experiences related to participation among Veterans with SCI/D. We recruited a convenience sample of individuals with SCI/D at the Hines Veterans Affairs (VA) SCI/D Unit. Participants were asked to take photographs exemplifying their experiences and activities regarding participation. Within four weeks, participants returned their photographs and completed semi-structured interviews to discuss their photographs. Interview transcripts were analyzed using an inductive coding approach to identify emerging themes. Of the 18 Veterans with SCI/D who completed the initial orientation session, 9 (50%) completed the photography phase and follow-up interviews. A majority of participants were White (67%) and the mean age was 64 years. The mean duration of injury was 21.8 years, and 75% of participants were paraplegic. Most participants (78%) were community-dwelling. All participants discussed participation as a highly relevant issue in their lives. A majority of participants (67%) described sports as an example of participation. Over half (56%) emphasized the positive effects of participation (i.e., feelings of enjoyment / accomplishment) in sports as well as engaging in faith-based activities, being outdoors, and managing business- or household-related responsibilities. Barriers to participation were mobility impairments, lack of transportation and cost. Findings from this study can be used to address environmental changes or other accommodations that influence participation, both inside and outside the health care setting

Evaluating implementation of methicillin-resistant Staphylococcus aureus (MRSA) prevention guidelines in spinal cord injury centers using the PARIHS framework: a mixed methods study

BACKGROUND: To prevent methicillin-resistant Staphylococcus aureus (MRSA) in Spinal Cord Injury and Disorder (SCI/D) Centers, the Guidelines for Implementation of MRSA Prevention Initiative in the Spinal Cord Injury Centers were released in July 2008 in the Veterans Affairs (VA) Health Care System. The purpose of this study was to use the Promoting Action on Research Implementation in Health Systems (PARiHS) framework to evaluate the experiences of implementation of SCI/D MRSA prevention guidelines in VA SCI/D Centers approximately 2-3 years after the guidelines were released. METHODS: Mixed methods were used across two phases in this study. The first phase included an anonymous, web-based cross-sectional survey administered to providers at all 24 VA SCI/D Centers. The second phase included semi-structured telephone interviews with providers at 9 SCI/D Centers. The PARiHS framework was used as the foundation of both the survey questions and semi-structured interview guide. RESULTS: The survey was completed by 295 SCI/D providers (43.8 % response rate) from 22 of the 24 SCI/D Centers (91.7 % participation rate). Respondents included nurses (57.3 %), therapists (24.4 %), physicians (11.1 %), physician assistants (3.4 %), and other health care professionals (3.8 %). Approximately 36 % of the SCI/D providers surveyed had not seen, did not remember seeing, or had never heard of the MRSA SCI/D guidelines, whereas 42.3 % of providers reported that the MRSA SCI/D guidelines were fully implemented in their SCI/D Center. Data revealed numerous barriers and facilitators to guideline implementation. Facilitators included enhanced leadership support and provider education, focused guideline dissemination to reach SCI/D providers, and strong perceived evidence supporting the guidelines. Barriers included lack of awareness of the guidelines among physical therapists and physician assistants and challenges in cohorting/isolating MRSA-positive patients and following contact precautions. CONCLUSIONS: Successful implementation of MRSA infection prevention guidelines in SCI/D settings requires (1) guideline dissemination that reaches the full range of SCI/D providers working in inpatient, outpatient, and other care settings, (2) provider education that is frequent and systematic, (3) strong leadership support, and (4) that barriers unique to the recommendations are addressed. These findings may be used to inform selection of implementation strategies and optimize infection prevention beyond MRSA as well as in other specialty care populations

Exploring content and psychometric validity of newly developed assessment tools for itch and skin pain in atopic dermatitis.

BackgroundAtopic dermatitis (AD) is a common skin disorder characterized by chronic inflammation, altered skin barrier function, and inflammatory cell skin infiltration that decreases health-related quality of life (HRQoL). The study objective was to understand the patient perspective of AD burden and determine suitable patient-reported outcome (PRO) measures.MethodsThis mixed methods study involved the collection of qualitative and quantitative information from adults (≥ 18 years old) and adolescents (12 - 17 years old) with clinician-confirmed AD regarding their experiences of AD symptoms and its impact on HRQoL. The first part of the study included three stages: in-person concept elicitation (CE) interviews, a 2-week daily electronic diary (eDiary) study, and in-person cognitive debriefing (CD) interviews. An Itch numeric rating scale (NRS) (v1.0) and a Skin Pain NRS (v1.0) evaluation during CD interviews required participants to think about their 'worst' itch and 'worst' skin pain in the past 24 h. Other PRO measures allowed for psychometric testing. The second part of the study involved telephone-depth interviews (TDIs) and qualitative feedback from participants who had not participated in the CD interviews. Qualitative data were thematically analyzed. Psychometric evaluation of NRS measures was performed using eDiary data.ResultsIn the CE interviews, itch and/or itching and skin pain were the most prevalent symptoms consistently discussed by participants. Both NRS measures demonstrated strong psychometric reliability and were applicable across ages with suitable concurrent validity. During the CD interviews, some participants focused their answers on their 'average' itch/itching in the past 24 h, rather than their 'worst' itch. Some participants answered the Skin Pain NRS thinking about general pain or other types of pain, rather than skin pain specifically. Consequently, modifications to both measures addressed these issues and re-tested as paper-and-pen versions in subsequent TDIs. Itch NRS (v2.0) modifications helped participants focus on their worst itching. Most participants preferred Skin Pain NRS v2.0b, which included skin pain descriptors.ConclusionsItching and skin pain are the most important and relevant AD symptoms. The Itch NRS (v2.0) and Skin Pain NRS (v2.0b) appear to be appropriate endpoints for the assessment of itching and skin pain severity for clinical trials with adults and adolescents with AD

Long-term Outcomes of Childhood Family Income Supplements on Adult Functioning

ImportanceDuring an ongoing longitudinal cohort study, a casino opening created a natural cash transfer experiment. Some participating families received income supplements, and others did not. The children in this study are now adults.ObjectiveTo assess the long-term outcomes of family income supplements received in childhood.Design, Setting, and ParticipantsThis community-representative longitudinal cohort study set in western North Carolina assessed 1266 participants aged 9, 11, and 13 years at intake up to 11 times up to age 30 years from January 1993 to December 2015. Data were analyzed from January to December 2021.ExposuresIn 1996, a southeastern American Indian tribe implemented a cash transfer program of approximately $5000 annually per person for tribal members. Participants were compared on whether their family ever received the cash transfers (American Indian vs non–American Indian), the duration of the transfers, and annual amount based on the number of parents.Main Outcomes and MeasuresParticipants were followed up at ages 25 and 30 years to assess mental health symptoms, substance use symptoms, and functional outcomes (physical health, risky or illegal behaviors, and financial and social functioning).ResultsOf 1266 included participants, 320 (25.3%) were American Indian and 581 (49.7%) were female. Participants whose families received cash transfers during childhood reported fewer anxiety symptoms (relative risk [RR], 0.33; 95% CI, 0.25-0.44), depressive symptoms (RR, 0.51; 95% CI, 0.42-0.62), and cannabis symptoms (RR, 0.47; 95% CI, 0.27-0.82). They also reported improved physical health (RR, 0.66; 95% CI, 0.55-0.80) and financial functioning (RR, 0.78; 95% CI, 0.67-0.89) and fewer risky or illegal behaviors (RR, 0.57; 95% CI, 0.46-0.72) compared with those who did not receive the cash transfer. This pattern was supported by a series of heterogeneity analyses in which children whose families received the transfers for the longest duration and whose families received the largest transfer (due to having multiple American Indian parents) had the lowest levels of symptoms and the highest levels of functioning.Conclusions and RelevanceIn this natural experiment, a family cash transfer in childhood was associated with positive adult functioning 20 years later. The findings support programs like the child tax credit or universal basic income that provide cash directly to families with children

A Search for Nitrogen-Enhanced Metal-Poor Stars

Theoretical models of very metal-poor intermediate-mass Asymptotic Giant Branch (AGB) stars predict a large overabundance of primary nitrogen. The very metal-poor, carbon-enhanced, s-process-rich stars, which are thought to be the polluted companions of now-extinct AGB stars, provide direct tests of the predictions of these models. Recent studies of the carbon and nitrogen abundances in metal-poor stars have focused on the most carbon-rich stars, leading to a potential selection bias against stars that have been polluted by AGB stars that produced large amounts of nitrogen, and hence have small [C/N] ratios. We call these stars Nitrogen-Enhanced Metal-Poor (NEMP) stars, and define them as having [N/Fe] > +0.5 and [C/N] < -0.5. In this paper, we report on the [C/N] abundances of a sample of 21 carbon-enhanced stars, all but three of which have [C/Fe] < +2.0. If NEMP stars were made as easily as Carbon-Enhanced Metal-Poor (CEMP) stars, then we expected to find between two and seven NEMP stars. Instead, we found no NEMP stars in our sample. Therefore, this observational bias is not an important contributor to the apparent dearth of N-rich stars. Our [C/N] values are in the same range as values reported previously in the literature (-0.5 to +2.0), and all stars are in disagreement with the predicted [C/N] ratios for both low-mass and high-mass AGB stars. We suggest that the decrease in [C/N] from the low-mass AGB models is due to enhanced extra-mixing, while the lack of NEMP stars may be caused by unfavorable mass ratios in binaries or the difficulty of mass transfer in binary systems with large mass ratios.Comment: 14 pages, 7 figures, to be published in Ap

Is the Closest Facility the One Actually Used? An Assessment of Travel Time Estimation Based on Mammography Facilities

Characterizing geographic access depends on a broad range of methods available to researchers and the healthcare context to which the method is applied. Globally, travel time is one frequently used measure of geographic access with known limitations associated with data availability. Specifically, due to lack of available utilization data, many travel time studies assume that patients use the closest facility. To examine this assumption, an example using mammography screening data, which is considered a geographically abundant health care service in the United States, is explored. This work makes an important methodological contribution to measuring access--which is a critical component of health care planning and equity almost everywhere. We analyzed one mammogram from each of 646,553 women participating in the US based Breast Cancer Surveillance Consortium for years 2005-2012. We geocoded each record to street level address data in order to calculate travel time to the closest and to the actually used mammography facility. Travel time between the closest and the actual facility used was explored by woman-level and facility characteristics

Patient prioritization of comorbid chronic conditions in the Veteran population: Implications for patient-centered care

OBJECTIVE: Patients with comorbid chronic conditions may prioritize some conditions over others; however, our understanding of factors influencing those prioritizations is limited. In this study, we sought to identify and elaborate a range of factors that influence how and why patients with comorbid chronic conditions prioritize their conditions. METHODS: We conducted semi-structured, one-on-one interviews with 33 patients with comorbidities recruited from a single Veterans Health Administration Medical Center. FINDINGS: The diverse factors influencing condition prioritization reflected three overarching themes: (1) the perceived role of a condition in the body, (2) self-management tasks, and (3) pain. In addition to these themes, participants described the rankings that they believed their healthcare providers would assign to their conditions as an influencing factor, although few reported having shared their priorities or explicitly talking with providers about the importance of their conditions. CONCLUSION: Studies that advance understanding of how and why patients prioritize their various conditions are essential to providing care that is patient-centered, reflecting what matters most to the individual while improving their health. This analysis informs guideline development efforts for the care of patients with comorbid chronic conditions as well as the creation of tools to promote patient-provider communication regarding the importance placed on different conditions

Prescribing practices of primary-care veterinary practitioners in dogs diagnosed with bacterial pyoderma

Concern has been raised regarding the potential contributions of veterinary antimicrobial use to increasing levels of resistance in bacteria critically important to human health. Canine pyoderma is a frequent, often recurrent diagnosis in pet dogs, usually attributable to secondary bacterial infection of the skin. Lesions can range in severity based on the location, total area and depth of tissue affected and antimicrobial therapy is recommended for resolution. This study aimed to describe patient signalment, disease characteristics and treatment prescribed in a large number of UK, primary-care canine pyoderma cases and to estimate pyoderma prevalence in the UK vet-visiting canine population

A randomised controlled trial of supplemental oxygen versus medical air during exercise training in people with chronic obstructive pulmonary disease: Supplemental oxygen in pulmonary rehabilitation trial (SuppORT) (Protocol)

© 2016 Alison et al. Background: Oxygen desaturation during exercise is common in people with chronic obstructive pulmonary disease (COPD). The aim of the study is to determine, in people with COPD who desaturate during exercise, whether supplemental oxygen during an eight-week exercise training program is more effective than medical air (sham intervention) in improving exercise capacity and health-related quality of life both at the completion of training and at six-month follow up. Methods/Design: This is a multi-centre randomised controlled trial with concealed allocation, blinding of participants, exercise trainers and assessors, and intention-to-treat analysis. 110 people with chronic obstructive pulmonary disease who demonstrate oxygen desaturation lower than 90 % during the six-minute walk test will be recruited from pulmonary rehabilitation programs in seven teaching hospitals in Australia. People with chronic obstructive pulmonary disease on long term oxygen therapy will be excluded. After confirmation of eligibility and baseline assessment, participants will be randomised to receive either supplemental oxygen or medical air during an eight-week supervised treadmill and cycle exercise training program, three times per week for eight weeks, in hospital outpatient settings. Primary outcome measures will be endurance walking capacity assessed by the endurance shuttle walk test and health-related quality of life assessed by the Chronic Respiratory Disease Questionnaire. Secondary outcomes will include peak walking capacity measured by the incremental shuttle walk test, dyspnoea via the Dyspnoea-12 questionnaire and physical activity levels measured over seven days using an activity monitor. All outcomes will be measured at baseline, completion of training and at six-month follow up. Discussion: Exercise training is an essential component of pulmonary rehabilitation for people with COPD. This study will determine whether supplemental oxygen during exercise training is more effective than medical air in improving exercise capacity and health-related quality of life in people with COPD who desaturate during exercise. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12612000395831 , 5th Jan,201

A Homozygous Mutation in the Tight-Junction Protein JAM3 Causes Hemorrhagic Destruction of the Brain, Subependymal Calcification, and Congenital Cataracts

The tight junction, or zonula occludens, is a specialized cell-cell junction that regulates epithelial and endothelial permeability, and it is an essential component of the blood-brain barrier in the cerebrovascular endothelium. In addition to functioning as a diffusion barrier, tight junctions are also involved in signal transduction. In this study, we identified a homozygous mutation in the tight-junction protein gene JAM3 in a large consanguineous family from the United Arab Emirates. Some members of this family had a rare autosomal-recessive syndrome characterized by severe hemorrhagic destruction of the brain, subependymal calcification, and congenital cataracts. Their clinical presentation overlaps with some reported cases of pseudo-TORCH syndrome as well as with cases involving mutations in occludin, another component of the tight-junction complex. However, massive intracranial hemorrhage distinguishes these patients from others. Homozygosity mapping identified the disease locus in this family on chromosome 11q25 with a maximum multipoint LOD score of 6.15. Sequence analysis of genes in the candidate interval uncovered a mutation in the canonical splice-donor site of intron 5 of JAM3. RT-PCR analysis of a patient lymphoblast cell line confirmed abnormal splicing, leading to a frameshift mutation with early termination. JAM3 is known to be present in vascular endothelium, although its roles in cerebral vasculature have not been implicated. Our results suggest that JAM3 is essential for maintaining the integrity of the cerebrovascular endothelium as well as for normal lens development in humans