Patient adherence to therapy after switch to aflibercept from bevacizumab or ranibizumab for treatment-refractory neovascular age-related macular degeneration.

PURPOSE: Clinical trials have demonstrated that switching patients from intravitreal bevacizumab (IVB) or ranibizumab (IVR) to aflibercept (IVA) for treatment-refractory neovascular age-related macular degeneration (nAMD) can decrease the injection frequency. This study evaluated whether there was a difference in the rate of injections or nonadherent events after switching therapies. METHODS: The study comprised a retrospective, cross-sectional analysis of patients treated for nAMD from 2010 to 2018 who received ≥3 intravitreal injections of IVB/IVR prior to switching to IVA because of treatment-refractory nAMD. The treatment index, outcomes, and adherence to treatment were compared between both treatment regimens. RESULTS: Sixty-two patients (67 eyes) met inclusion criteria. There was no change in the treatment index (0.65 versus 0.66, P = 0.650) or the number of nonadherent events (33 versus 36, P = 0.760) after the switch from IVB/IVR to IVA. Central macular thickness (CMT) increased 7.7%±13.8% in eyes that had a nonadherent event (283±69 µm to 304±75 µm after resuming care, P = 0.039). There was no short-term impact on visual acuity (VA) for this subset of eyes (0.387±0.202 LogMAR versus 0.365±0.156 LogMAR, P = 0.636). Patients who had nonadherent events ended the study with similar VA compared with patients who had no treatment lapses (0.370±0.616 LogMAR versus 0.337±0.638 LogMAR, P = 0.843). CONCLUSION: Switching from IVB/ IVR to IVA for treatment-refractory nAMD in a real-world setting does not reduce the treatment index or increase adherence to treatment. Although there were short-term anatomical effects resulting from missed treatments, VA remained stable.

Draft Genome Sequences for a Diverse Set of Seven Haemophilus and Aggregatibacter Species.

Haemophilus is a complex genus that includes commensal and pathogenic species that pose a public health threat to humans. While the pathogenic species have been studied extensively, many commensals have limited genomic information available. Here, we present 24 draft genomes for a diverse set of 7 Haemophilus and Aggregatibacter species.

BMScan: using whole genome similarity to rapidly and accurately identify bacterial meningitis causing species.

BACKGROUND: Bacterial meningitis is a life-threatening infection that remains a public health concern. Bacterial meningitis is commonly caused by the following species: Neisseria meningitidis, Streptococcus pneumoniae, Listeria monocytogenes, Haemophilus influenzae and Escherichia coli. Here, we describe BMScan (Bacterial Meningitis Scan), a whole-genome analysis tool for the species identification of bacterial meningitis-causing and closely-related pathogens, an essential step for case management and disease surveillance. BMScan relies on a reference collection that contains genomes for 17 focal species to scan against to identify a given species. We established this reference collection by supplementing publically available genomes from RefSeq with genomes from the isolate collections of the Centers for Disease Control Bacterial Meningitis Laboratory and the Minnesota Department of Health Public Health Laboratory, and then filtered them down to a representative set of genomes which capture the diversity for each species. Using this reference collection, we evaluated two genomic comparison algorithms, Mash and Average Nucleotide Identity, for their ability to accurately and rapidly identify our focal species. RESULTS: We found that the results of Mash were strongly correlated with the results of ANI for species identification, while providing a significant reduction in run-time. This drastic difference in run-time enabled the rapid scanning of large reference genome collections, which, when combined with species-specific threshold values, facilitated the development of BMScan. Using a validation set of 15,503 genomes of our species of interest, BMScan accurately identified 99.97% of the species within 16 min 47 s. CONCLUSIONS: Identification of the bacterial meningitis pathogenic species is a critical step for case confirmation and further strain characterization. BMScan employs species-specific thresholds for previously-validated, genome-wide similarity statistics compiled from a curated reference genome collection to rapidly and accurately identify the species of uncharacterized bacterial meningitis pathogens and closely related pathogens. BMScan will facilitate the transition in public health laboratories from traditional phenotypic detection methods to whole genome sequencing based methods for species identification.

Draft Genome Sequences for a Diverse Set of Isolates from 10 Neisseria Species.

Neisseria is a diverse genus that includes commensal and pathogenic species that pose a public health threat. While the pathogenic species have been studied extensively, many of the commensals have limited genomic information available. Here, we present draft genome sequences for a diverse set of 37 isolates from 10 Neisseria species.

Using eye-tracking technology for communication in Rett syndrome: perceptions of impact.

Studies have investigated the use of eye-tracking technology to assess cognition in individuals with Rett syndrome, but few have looked at this access method for communication for this group. Loss of speech, decreased hand use, and severe motor apraxia significantly impact functional communication for this population. Eye gaze is one modality that may be used successfully by individuals with Rett syndrome. This multiple case study explored whether using eye-tracking technology, with ongoing support from a team of augmentative and alternative communication (AAC) therapists, could help four participants with Rett syndrome meet individualized communication goals. Two secondary objectives were to examine parents' perspectives on (a) the psychosocial impact of their child's use of the technology, and (b) satisfaction with using the technology. All four participants were rated by the treating therapists to have made improvement on their goals. According to both quantitative findings and descriptive information, eye-tracking technology was viewed by parents as contributing to participants' improved psychosocial functioning. Parents reported being highly satisfied with both the device and the clinical services received. This study provides initial evidence that eye-tracking may be perceived as a worthwhile and potentially satisfactory technology to support individuals with Rett syndrome in communicating. Future, more rigorous research that addresses the limitations of a case study design is required to substantiate study findings.

Three-year trajectories of global perceived quality of life for youth with chronic health conditions.

PURPOSE: Objectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective. METHODS: Youth with various chronic conditions aged 11-17 years and one of their parents were recruited from eight children's treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories. RESULTS: A total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: 'high and stable' (85.7 %) and 'moderate/low and stable' (14.3 %), while three trajectories were found for the parent analysis: 'high and stable' (35.7 %), 'moderate and stable' (46.6 %), and 'moderate/low and stable' (17.7 %). Relative to the 'high and stable' groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the 'moderate and stable' or 'moderate/low and stable' groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the 'moderate and stable' or 'moderate/low and stable' groups, compared to the 'high and stable' groups. CONCLUSION: Findings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths' global perceived QOL are indicated.

Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection.

While optimizing quality of life (QOL) is a key goal of rehabilitation care, no previous study has reported on what 'QOL' means to youth with chronic health conditions. In addition, no qualitative studies have explored the relationship between QOL and self-determination (SD). Objectives of this qualitative study were to examine: what the terms 'quality of life' and 'self-determination' mean to youth with chronic conditions; the factors these youth think are linked with these concepts; the relationship they see between concepts, the types of future goals youth have and how they view the connection between their SD and these goals. A descriptive methodology was used. A purposive sample of 15 youth aged 15 to 20 years was obtained. Youth had cerebral palsy, a central nervous system disorder, or autism spectrum disorder. Semi-structured interviews were conducted first, followed by a focus group. Line-by-line coding of transcripts was completed, codes were collapsed into categories, and themes identified. Participants viewed QOL as an overarching personal evaluation of their life, and used terms such as satisfaction and happiness to describe the concept. Factors related to QOL included: 'relationships', 'supportive environments', 'doing things', 'personal growth and moving forward', and 'understanding of self/acceptance of disability'. Participants described SD in such terms as confidence and motivation. Contributors to SD were: 'personal strengths', 'interdependence', and 'functional independence'. SD was considered important to QOL. Youth goals were reflective of the goals of most adolescents. They identified the importance of having key goals that were of personal interest to them. This study adds consumer-based information to the debate over the meaning of QOL. Service providers and decision makers should be aware of the factors that youth feel impact their QOL and SD, the importance of SD to youth QOL, and of SD to future goals, and consider this information when tailoring therapeutic interventions.

Inpatient Ophthalmology Consultation for Fungemia: Prevalence of Ocular Involvement and Necessity of Funduscopic Screening.

PURPOSE: To determine the generalizability of recent data assessing the necessity of ophthalmic consultation for fungemic patients, we examined the prevalence, microbial profile, and treatment of fungal chorioretinitis and endophthalmitis among patients with positive fungal cultures referred for ophthalmologic consultation at a tertiary care medical center. DESIGN: Retrospective cross-sectional study. METHODS: All inpatient ophthalmology consultations from Wills Eye Hospital at Thomas Jefferson University between January 1, 2006 and December 31, 2012 were retrospectively reviewed and cross-referenced to a microbiologic database of positive fungal blood cultures. This included 227 adult consecutive inpatients with positive fungal blood cultures (n = 215) or suspected fungemia (n = 12). Clinical data were extracted from records held by the microbiology laboratory and inpatient records. Patients were deemed to have ocular fungal involvement if dilated fundus examination demonstrated evidence of chorioretinitis or endophthalmitis. RESULTS: Two hundred and twenty-seven consultations were requested to evaluate patients for ocular manifestations of fungemia. Eleven patients (4.8%, 95% CI 2.4%-8.5%) were diagnosed with fungal chorioretinitis or endophthalmitis. Of these 11 patients, 5 had visual symptoms, 2 were asymptomatic, and 4 were unable to communicate. A total of 5 patients (2.2%) received intravitreal injections following funduscopic screening. An additional 11 patients (4.8%) had nonspecific fundus lesions considered to be inconsistent with ocular fungal involvement. The most common fungal species identified were Candida albicans (n = 85), Candida glabrata (n = 63), and Candida parapsilosis (n = 44). CONCLUSIONS: The current study found a low rate of disseminated ocular involvement in patients with positive fungal cultures referred for ophthalmologic consultation. However, 2 patients with ocular fungal involvement denied visual symptoms and over half of affected patients were asymptomatic or unable to communicate. As the presence and severity of ocular involvement in fungemic patients may dictate the mode and duration of antifungal treatment, funduscopic screenings may still have an important role.

Assessing the Psychometric Properties of Both a Global and a Domain-Specific Perceived Quality of Life Measure When Used with Youth Who Have Chronic Conditions.

The purpose of this paper was to assess the psychometric properties of the Students' Life Satisfaction Scale (SLSS) and the Brief Multidimensional Students' Life Satisfaction Scale (BMSLSS) when used with youth who have chronic conditions. Baseline data from a longitudinal study examining predictors of changes in perceived quality of life (PQOL) for youth with chronic conditions were used. SLSS and BMSLSS data were collected on over 400 youth aged 11-17 using youth self-report and parent proxy-report versions. Internal consistency, convergent validity, and factor structure were examined for both versions. Extent of agreement and magnitude of differences between youth and parent report were evaluated. Finally, gender, age, and condition group differences in youth report scores were examined for the SLSS and BMSLSS. Strong internal consistency was demonstrated for the youth and parent reports of both measures. As with normative samples, a single factor structure was found for youth and parent reports of the BMSLSS. However, both youth and parent reports of the SLSS had a two-factor structure: one consisting of five positively worded items, and the other, two negatively worded items. Youth reported their PQOL to be significantly higher than did their parents. Significant differences in PQOL scores for the youth report were not found by age, gender, or conditions. Findings show that, from a psychometric standpoint, the BMSLSS (both youth and parent report) is a promising measure of PQOL for use in population-based research with youth who have chronic conditions. The SLSS may need to be revised to exclude negative items when used with this population of youth.

School-based occupational therapy for children with fine motor difficulties: evaluating functional outcomes and fidelity of services.

Consultative occupational therapy services are becoming widely used in the school environment. However, few studies have evaluated the utility of and the process by which these services are delivered. This study examined whether the written communication and fine motor skills of 23 children with fine motor difficulties improved after receiving school-based occupational therapy from a program whose mandate was to deliver services according to a consultation model of service delivery. In addition, the study assessed the process of service delivery, including treatment fidelity, or the extent to which consultation services were implemented as intended. Statistically significant and practically meaningful improvement was found in written communication on the Vineland Adaptive Behavior Scales-Classroom Edition (VABS-C) and School Functional Assessment-Version 3.0 (SFA), and in fine motor skills on the SFA, but not on the VABS-C. An examination of the service delivery process revealed that therapists deviated from a purely consultative model, with 86% providing some direct therapy to children. Parents were mostly satisfied with services received, whereas teachers were indifferent or somewhat dissatisfied. Treatment fidelity is taken into consideration when discussing study findings. Recommendations to enhance school-based occupational therapy services delivered according to a primarily consultative model, and suggestions for future research, are provided.