Exploring the needs and experiences of contact tracing staff during the COVID-19 pandemic in Ireland.

BACKGROUND: Contact tracing is a key component in controlling the spread of COVID-19, however little research has focused on learning from the experiences of contact tracing staff. Harnessing learning from those in this role can provide valuable insights into the process of contact tracing and how best to support staff in this crucial role. METHODS: Thematic analysis was used to analyse 47 semi-structured interviews conducted with contact tracing staff via telephone or Zoom at three time points in 2021: March, May and September-October. RESULTS: Six themes related to the contact tracing role were identified, including training, workforce culture, systems issues, motivation and support. While initially nervous in the role, participants were motivated to contribute to the pandemic response and believed the role provided them with valuable transferable skills. Participants described the training as having improved over time while desiring more proactive training. Sources of frustration included a perceived lack of opportunity for feedback and involvement in process changes, feelings of low autonomy, and a perception of high staff turnover. Participants expressed a need for improved communication of formal emotional supports. Increased managerial support and provision of opportunities for career advancement may contribute to increased motivation among staff. CONCLUSIONS: These findings identify the experiences of contact tracing staff working during the COVID-19 pandemic, and have important implications for the improvement of the contact tracing system. Recommendations based on learning from participants offer suggestions as to how best to support the needs of contact tracing staff during a pandemic response.

Exploring the psychological impact of contact tracing work on staff during the COVID-19 pandemic.

BACKGROUND: Contact tracing is a key control measure in the response to the COVID-19 pandemic. While quantitative research has been conducted on the psychological impact of the pandemic on other frontline healthcare workers, none has explored the impact on contact tracing staff. METHODS: A longitudinal study was conducted using two repeated measures with contact tracing staff employed in Ireland during the COVID-19 pandemic using two-tailed independent samples t tests and exploratory linear mixed models. RESULTS: The study sample included 137 contact tracers in March 2021 (T1) and 218 in September 2021 (T3). There was an increase from T1 to T3 in burnout related exhaustion (p < 0·001), post-traumatic stress disorder (PTSD) symptom scores (p < 0·001), mental distress (p < 0·01), perceived stress (p < 0·001) and tension and pressure (p < 0·001). In those aged 18-30, there was an increase in exhaustion related burnout (p < 0·01), PTSD symptoms (p < 0·05), and tension and pressure scores (p < 0·05). Additionally, participants with a background in healthcare showed an increase in PTSD symptom scores by T3 (p < 0·001), reaching mean scores equivalent to those of participants who did not have a background in healthcare. CONCLUSIONS: Contact tracing staff working during the COVID-19 pandemic experienced an increase in adverse psychological outcomes. These findings highlight a need for further research on psychological supports required by contact tracing staff with differing demographic profiles.

Contact tracing during the COVID-19 outbreak: a protocol for enabling rapid learning from experiences and exploring the psychological impact on contact tracers.

Background: Given the unprecedented nature of the COVID-19 pandemic, the Irish health system required the redeployment of public sector staff and the recruitment of dedicated contact tracing staff in the effort to contain the spread of the virus. Contact tracing is crucial for effective disease control and is normally carried out by public health teams. Contact tracing staff are provided with rapid intensive training but are operating in a dynamic environment where processes and advice are adapting continuously. Real-time data is essential to inform strategy, coordinate interconnected processes, and respond to needs . Given that many contact tracers have been newly recruited or redeployed, they may not have significant experience in healthcare and may experience difficulties in managing the anxieties and emotional distress of the public. Aim: (i) identify emerging needs and issues and feed this information back to the Health Service Executive for updates to the COVID-19 Contact Management Programme (CMP); (ii) understand the psychological impact on contact tracers and inform the development of appropriate supports. Methods: We will use a mixed-methods approach. A brief online survey will be administered at up to three time points during 2021 to measure emotional exhaustion, anxiety, general health, and stress of contact tracing staff, identify tracing systems or processes issues, as well as issues of concern and confusion among the public. Interviews will also be conducted with a subset of participants to achieve a more in-depth understanding of these experiences. Observations may be conducted in contact tracing centres to document processes, practices, and explore any local contextual issues. Impact: Regular briefs arising from this research with data, analysis, and recommendations will aim to support the work of the CMP to identify problems and implement solutions. We will deliver regular feedback on systems issues; challenges; and the psychological well-being of contact tracing staff.

Association between attendance at a specialist palliative care day unit and improvement in patient symptoms and quality of life.

BACKGROUND: Specialist palliative day care is an area of palliative care which has a notable scarcity of research. Evidence is needed on the role of palliative day care to improve patients' quality of life and symptom management, while recognising the different patient cohorts that use the service. AIM: To determine the symptoms and quality of life of the patient cohort that are affected by the completion of a full therapeutic cycle (8 to 9 weeks) at a specialist palliative care day unit (SPCDU). METHOD: A retrospective cohort study was carried out from January 2016 to December 2017. Patient related outcome measures (PROMs) were collected as part of routine clinical paperwork at admission and discharge, and these were used to determine symptoms and quality of life pre-attendance and on completion of an 8 to 9 week therapeutic cycle at the SPCDU. RESULTS: Descriptive analysis demonstrated improvement across the many symptoms that were analysed. Quality of life analysis also established improvement. Statistically significant difference was achieved in several areas. Total physical symptoms (p value=.009) confirmed the positive impact attendance at SPCDU has on physical symptoms. Specific symptoms which displayed a statistically significant difference included: poor appetite (p value=.002), weakness (p value=.03) and the anxiety felt by family/friends (p value=.029). The quality of a patient's life also displayed statistically significant difference (p value=.000). CONCLUSION: This study demonstrates that attendance at a SPCDU may positively impact a patients' symptoms and quality of life. A more uniform national approach to specialist palliative day care delivery, alongside multi-setting research, may further bolster the image of palliative day care. This will improve referrals to and occupancy of SPDCUs and benefit the palliative patient in the community.

Ophthalmologic disorders and risk factors in children with autism spectrum disorder.

PURPOSE: To report the results of our review of all children with autism spectrum disorder (ASD) who underwent complete pediatric ophthalmologic examination at our institution over a 10-year period. METHODS: The medical records of all children (0-17 years of age) with a diagnosis of ASD seen at University of California, Davis, over a 10-year period were reviewed retrospectively. Demographic data, birth history, genetic testing results, neuropsychiatric comorbidities, and ophthalmologic findings were extracted from the record. Multiple logistic regression was used to identify risk factors for ophthalmologic disorders. RESULTS: A total of 2,555 children with ASD were seen at the university over the study period, of whom 380 (15%) were evaluated in the ophthalmology clinic. Eye examination revealed an ophthalmic diagnosis in 71% of children, of which the most common were significant refractive error (42%), strabismus (32%), and amblyopia (19%). Optic neuropathy occurred in 14 children (4%). Cerebral palsy was a significant risk factor for refractive error (OR = 3.22; P = 0.016), strabismus (OR = 3.59; P = 0.012), amblyopia (OR = 3.49; P = 0.0097), and optic neuropathy (OR = 14.0; P = 0.0009). CONCLUSIONS: Ophthalmic disorders were found in 71% of children with ASD evaluated at our university-based ophthalmology clinic. The rates of significant refractive error, strabismus, amblyopia, and optic neuropathy exceeded those of the general pediatric population. ASD and cerebral palsy may have additive risk for these disorders.

Ectopia Lentis et Pupillae Caused by ADAMTSL4 Pathogenic Variants and an Algorithm for Work-up.

Ectopia lentis is displacement of the lens from its original position. It can be inherited or acquired with isolated or systemic findings. The authors describe a 4-year-old girl with isolated ectopia lentis et pupillae caused by pathogenic variants in the ADAMTSL4 gene and discuss the molecular genetic work-up of individuals with ectopia lentis. [J Pediatr Ophthalmol Strabismus. 2019;56:e45-e48.].

Development of a Psycho-Educational Support Program for Individuals with Primary Progressive Aphasia and their Care-Partners.

Primary progressive aphasia is a language-based dementia that initially spares other cognitive domains; however, aphasia interferes with many life roles such as work and interpersonal relationships. Psycho-educational programs, such as support groups have been shown to be effective for persons with Alzheimer's dementia; however, little is known regarding their effectiveness for persons with primary progressive aphasia. This paper describes the development of a program that offers support, education and activities for persons with primary progressive aphasia and their care-partners and its feasibility. Development and structure of pilot and formal intervention groups are described. Thematic analysis of both groups included the following themes: (1) coping with limitations and language decline; (2) dealing with increased dependency; (3) expressing resilience and making adaptations; (4) experiencing stigma (pilot group) and confronting stigma (intervention group); (5) experiencing self-confidence; and (6) feeling a sense of belonging. The knowledge gained from this process may be useful in designing programs for individuals with aphasic dementia and preserved insight. Evidence-based data from supportive interventions for persons with primary progressive aphasia and their care-partners are needed.

Strabismus surgery for Medicare-aged patients: more than a decade of insights.

BACKGROUND: The psychosocial and functional impact of strabismus among the elderly is increasingly important as life expectancy increases and factors that enhance the quality of life become more significant. The purpose of this study was to characterize the demographics, presenting complaints, health status, underlying etiology, and outcomes of strabismus surgery in three age cohorts of Medicare-aged patients. METHODS: The medical records of patients at least 65 years of age who underwent strabismus surgery between 2004 and 2015 in a university-based strabismus practice were reviewed retrospectively. RESULTS: A total of 110 patients were identified and divided into three age cohorts for analysis: young-old (age 65-74), middle-old (age 75-84), and old-old (age 85+). At least 75% of patients in all cohorts cited diplopia as their chief complaint (P = 0.87). There was no difference in sex distribution, type of deviation, underlying etiology, or preoperative American Society of Anesthesiologists physical status classification scores between the cohorts (P = 0.68, P = 0.53, P = 0.71, P = 0.93, resp.). By the 6- to 8-week postoperative visit, 63% of all patients reported complete resolution of their presenting chief complaint, 23% reported some improvement, and 11% reported no improvement, with no difference between the cohorts (P = 0.12). CONCLUSIONS: Given the functional and psychosocial impact of strabismus in the elderly, this study lends support to consideration of surgery as a viable option to successfully treat strabismus among the oldest age cohorts.

Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study.

Background: Type 1 diabetes (T1D) is an auto-immune condition which requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory. Methods: Intervention development consisted of 4 phases: 1) the formation of a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults' diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention. Results: The YAP resulted in meaningful involvement between young adults, researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making. Conclusions: This study described the systematic development of an intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process.

A core outcomes set for clinical trials of interventions for young adults with type 1 diabetes: an international, multi-perspective Delphi consensus study.

BACKGROUND: Achieving consensus from a range of relevant stakeholders about an agreed set of core outcomes to be measured and reported as a minimum in clinical trials has the potential to enhance evidence synthesis and make findings more relevant and applicable. Intervention research to improve outcomes for young adults with type 1 diabetes (T1DM) is hampered by inconsistent use of outcome measures. This population frequently struggles to manage their condition and reports suboptimal clinical outcomes. Our aim was to conduct an international, e-Delphi consensus study to identify a core outcome set (COS) that key stakeholders (young adults with T1DM, diabetes health professionals, diabetes researchers and diabetes policy makers) consider as essential outcomes for future intervention research. METHODS: Using a list of 87 outcomes generated from a published systematic review, we administered two online surveys to a sample of international key stakeholders. Participants in the first survey (survey 1; n = 132) and the second survey (survey 2; n = 81) rated the importance of the outcomes. Survey 2 participants received information on total mean rating for each outcome and a reminder of their personal outcome ratings from Survey 1. Survey 2 results were discussed at a consensus meeting and participants (n = 12: three young adults with T1DM, four diabetes health professionals, four diabetes researchers and one diabetes policy maker) voted on outcomes. Final core outcomes were included provided that 70% of consensus group participants voted for their inclusion. RESULTS: Eight core outcomes were agreed for inclusion in the final COS: measures of diabetes-related stress; diabetes-related quality of life; number of severe hypoglycaemic events; self-management behaviour; number of instances of diabetic ketoacidosis (DKA); objectively measured glycated haemoglobin (HbA1C); level of clinic engagement; and perceived level of control over diabetes. CONCLUSIONS: This study is the first to identify a COS for inclusion in future intervention trials to improve outcomes for young adults with T1DM. Use of this COS will improve the quality of future research and increase opportunities for evidence synthesis. Future research is necessary to identify the most robust outcome measure instruments.

Is diabetes self-management education still the Cinderella of diabetes care?

This paper reflects on the status of diabetes self-management education (DSME) as a branch of diabetology in Europe and discusses some opportunities for better supporting DSME delivery. DSME (also commonly known as Therapeutic Patient Education) has been evolving as a therapy for diabetes for decades. As a continent, Europe is fortunate to have nurtured many pioneers in DSME, and currently has many experts in the field progressing the knowledge base and striving to improve access to DSME for people with diabetes. While there is a wide variety of DSME programmes being delivered throughout Europe, for most people diabetes education is not truly embedded in routine clinical care, being seen as more of an optional add-on to conventional therapies. In comparison to drugs and devices, DSME lacks investment, and funding for DSME research lags far behind other therapies. The rigour with which forms of DSME are developed and evaluated varies, and there is a lack of European quality standards. To try to address some of these deficiencies, greater pan-European collaboration and leadership is required.

Instrument-based pediatric vision screening.

PURPOSE OF REVIEW: The purpose is to review currently available instruments for vision screening in young children. RECENT FINDINGS: Instrumentation continues to evolve. Although the current generation of photoscreeners and autorefractors strive to identify amblyopia risk factors, newer technology aims to directly identify amblyopia in young children. Acceptance of instrument-based vision screening for this population has led to increased reimbursement for the procedure in primary care practices. SUMMARY: Instrument-based vision screening in the young child is an accepted method of screening for amblyopia. Innovations in instrumentation will continue to improve its implementation.

'It makes a difference, coming here': A qualitative exploration of clinic attendance among young adults with type 1 diabetes.

OBJECTIVE: Young adulthood is a time of significant challenges and risks for people with type 1 diabetes. Poor outpatient clinic attendance is common among young adults with type 1 diabetes. The aim of this qualitative study was to develop a theory explaining attendance at a hospital-based diabetes clinic. DESIGN: Using a grounded theory methodology, data were collected through semi-structured qualitative interviews. METHOD: Twenty-nine people (21 young adults with type 1 diabetes and eight service providers) from one hospital-based diabetes clinic were interviewed. Interviews were audio-recorded, transcribed, and analysed according to grounded theory methodology. RESULTS: Relationships between young adults and service providers is the core category of this theory. Collaborative relationships between young adults and service providers increased the perceived value of attendance and reduced the vulnerability of young adults to the barriers within the existing service, such as meeting unfamiliar service providers. Relationships between young adults and service providers were developed following opportunities for contact (e.g., structured education programme or crisis of diabetes), and facilitated engagement with the service and further attendance. Barriers to clinic attendance included young adults' negative perceptions of their diabetes self-management and a lack of value associated with attending. CONCLUSION: The diabetes clinic was described as an important and valued resource by young adults and service providers. Collaborative relationships between young adults and service providers enhanced service provision in this study. According to the results of this study, clinic attendance may be improved by increasing opportunities for relationship development between service providers and young adults. Statement of contribution What is already known on this subject? Attendance by young adults at hospital-based diabetes clinics is important to support self-management. Young adults with type 1 diabetes are at risk of clinic non-attendance. What does this study add? This study presents an explanatory theory of clinic attendance among young adults with type 1 diabetes. According to this theory: Barriers within existing models of service delivery prevent collaboration and may contribute to non-attendance. Relationships between service users and providers can establish or maintain regular clinic attendance by fostering the engagement of young adults with diabetes clinics.