Restricted Health Care Research Articles

Translating restrictive law into practice: An ethnographic exploration of the systemic processing of legally restricted health care access for asylum seekers in Germany

BackgroundAccess to health services for asylum seekers is legally restricted in Germany. The law is subject to interpretation, therefore the chance of receiving care is not equally distributed among asylum seekers. What services are provided to whom is ultimately decided by health professionals and government employees. The respective prioritization processes and criteria are not transparent. We sought to understand how legal restrictions are translated into daily practices and how this affects the health system. We aimed to outline the complex process of cost coverage for health services for asylum seekers and provide insights into common decision-making criteria.MethodsWe conducted an ethnographic exploration of routines in two outpatient clinics in two federal states over the course of three months, doing participant and non-participant observation. Additionally, we interviewed 21 professionals of health care and government organizations, and documented 110 applications for cost coverage of medical services and their outcome. In addition to qualitative data analysis and documentation, we apply a system-theoretical perspective to our findings.ResultsTo perform legal restrictions a cross-sectoral prioritization process of medical services has been implemented, involving health care and government institutions. This changes professional practices, responsibilities and (power) relations. Involved actors find themselves at the intersection of several, oftentimes conflicting priorities, since “doing it right” might be seen differently from a legal, medical, economic, or political perspective. The system-theoretical analysis reveals that while actors have to bring different rationales into workable arrangements this part of the medical system transforms, giving rise to a sub-system that incorporates migration political rationales.ConclusionsHealth care restrictions for asylum seekers are implemented through an organizational linking of care provision and government administration, resulting in a bureaucratization of practice. Power structures at this intersection of health and migration policy, that are uncommon in other parts of the health system are thereby normalized. Outpatient clinics provide low-threshold access to health services, but paradoxically they may unintentionally stabilize health inequities, if prioritization criteria and power dynamics are not made transparent. Health professionals should openly reflect on conflicting rationales. Training, research and professional associations need to empower them to stay true to professional ethical principles and international conventions.

Gendered Racism in Pregnancy and Stress Among Women in the United States During the COVID-19 Pandemic

Abstract: High stress experienced during pregnancy increases risk for adverse birth outcomes such as low birthweight and preterm birth that occur disproportionately among women of color in the United States. Prior research has identified a distinct form of discrimination, gendered racism in pregnancy (GRiP), that likely elevates stress and is suspected to contribute to racial disparities in birth outcomes among American women. We investigated associations of GRiP experiences and distress with two types of stress, pregnancy related and pandemic related, among 2,995 pregnant women in the United States at the height of the COVID-19 pandemic, a time when health care restrictions, social contact limitations, and concerns about COVID-19 infection created added stress for pregnant women. Using data collected online during the second US pandemic surge (December 2020), we found that pregnant self-identified Hispanic/Latina ( n = 233), Non-Hispanic/Latina Black/African American ( n = 182), and Multiracial/Other ( n = 201) women experienced greater GRiP and greater stress of both types than Non-Hispanic/Latina White women. Structural equation modeling indicated a strong association of racial/ethnic identity with prenatal stress that was mediated by GRiP, independent of other contributors to prenatal stress. Focusing on the harmful impact of gendered racism coupled with culturally informed individual interventions and change at multiple societal levels and institutions may help reduce the poorer reproductive outcomes that are disproportionately common among communities of color in the United States. Addressing and alleviating discrimination can improve reproductive justice for all who choose to give birth throughout the world, regardless of their race, ethnicity, nationality, or other identities.

Moving pain management programmes into the digital age: development and evaluation of an online PMP for people with chronic pain.

In response to Coronovirus Disease (COVID-19) health care restrictions, the pain management programme delivered group treatment digitally (OPMP). We aimed to: 1) evaluate pain related outcomes of the OPMP, 2) evaluate patient satisfaction and qualitive feedback of the OPMP and 3) compare OPMP outcomes with the pre-pandemic face to face (F2F) PMP outcomes. Age, gender, pain duration, occupational status, referral information and patient satisfaction data were collected. Pre- and post-treatment pain related outcomes were compared by calculating mean difference, benchmarking with effect size (Cohen's d) and determining clinically significant change (CSC) for OPMP and F2F PMP. Two-hundred and thirty-seven patients provided outcome data, with 60 completing the OPMP and 177 completing the F2F PMP. OPMP patients were 10 years younger than the F2F PMP (44.8 vs 53.3), more were female (6.5:1 vs 2.8:1), more were working (45% vs 27%) and fewer were retired (3% vs 17%). The OPMP showed improvements comparable to the F2F PMP. Large effect size was reported across all outcome domains including objective physical outcomes. Eighty-one percent of OPMP patients were 'extremely likely' to recommend the programme but just over 50% of patients felt F2F would provide greater clinical benefits. The results support that OPMP is effective for carefully selected patients following a multidisciplinary team assessment however more complex cases still require F2F PMP.

Impact of COVID-19 on paediatric chronic intestinal failure: A tertiary care children's hospital experience.

Paediatric patients with intestinal failure (IF) are at risk for both gastrointestinal (GI) and systemic complications, thus depending on a functioning network of multidisciplinary care. Data on the clinical impact of coronavirus disease 2019 (COVID-19) or the pandemic-related restrictions are limited. We aimed to analyse the clinical course of COVID-19 in children with IF, and to evaluate the perceived impact of the COVID-19 pandemic on IF patients and their caregivers by analysing quality of life (QoL), health-related QoL (HRQoL) and health care. Children with IF presenting at our intestinal rehabilitation centre were enrolled and interviewed about test-proven COVID-19 infection. A standardised questionnaire was offered to all caregivers of IF patients and to two control groups (children with inflammatory bowel disease and gastrointestinal healthy children). Between December 2020 and November 2022, 25 out of 127 patients with IF contracted COVID-19. Forty-eight per cent had GI symptoms, 32% required additional intravenous fluids and 20% were hospitalized. Only 25% of vaccinated children showed signs of GI dysfunction, compared to 52% of unvaccinated children. Analysis of 93 questionnaires showed a negative impact on QoL and HRQoL (>66.7% and >27.8%, respectively). IF patients frequently experienced restrictions in health care, including appointments, services and supply of parenteral nutrition or medications. Caregiver burden increased significantly more often in caregivers of children with IF (p = 0.007). Paediatric patients with IF contracting COVID-19 have an increased risk for GI dysfunction which may be alleviated by vaccination. Children and their caregivers were highly burdened by pandemic-related restrictions and reductions in health care provision.

Pre-Pandemic and Recent Oral and Medical Health Care Utilization among Young American Indian Children and Their Caregivers

Children from diverse ethnic groups are at significantly increased risk for dental caries. In particular, American Indian (AI) children have the highest incidence of detal caries of any ethnic group. The COVID-19 pandemic dramatically restricted health care access, including preventive oral health care. Given this context, it is unclear whether or not preventive oral health care for AI children has resumed since lockdown. To address this question, we surveyed adult AI caregivers (N = 152) of children aged 0–5 years, assessing recent (12-month) and pre-COVID (for caregivers of children aged 3–5 years) preventive oral and medical health services. We also examined medical health care access and utilization among caregivers. Among children aged 3–5 years old, both pre-pandemic and past year medical care utilization were generally high (80 and 90%, respectively) as was any oral health care utilization (64 & 78%, respectively). Oral health check-ups were more common over the last year (62%) compared to pre-COVID (44%). Recent health care utilization among children 1–5 years old in this sample were generally comparable to national estimates, except for higher reported preventive medical care (99% vs. 87.6%, respectively) and higher preventive oral care (96% vs. 59.6%, respectively). More caregivers reported delaying or foregoing needed health care due to COVID (28–38%) versus due to cost (8–17%). In this survey of AI caregivers, recent child preventive health care utilization was high, and changes in utilization following the lockdown phases of the pandemic were comparable for oral and medical health care.

But is it for us? Rural Chinese elders’ perceptions, concerns, and physical preferences regarding social robots

Social robots can benefit aging people, especially those with restricted social interactions and health care, but how do resource-poor older adults respond to them? In this study, 5 focus groups with 60 older participants in rural China revealed their perceptions of social robots, concerns about the technology, and the types of social robots they were likely to accept. The participants cited multiple technological, discomfort, privacy, safety, and financial fraud concerns. They struggled to define robots as machines, humans, or something else but preferred small-sized, animal-shaped, or young female-gendered human-like robots. Their interconnected perceptions, concerns, and preferences illuminate a resource-poor group’s struggles, imaginations, hopes, uncertainties, and vulnerabilities when a new social and technological actor is embedded in their social worlds, reflecting how people understand social robots in relation to themselves and themselves in relation to social robots. Our study findings contribute to understanding social robots’ subjectivities and ways to design culturally and socially acceptable robots.

Turning Rage Into Action: Abortion Care and Residency Training in the United States.

Turning Rage Into Action: Abortion Care and Residency Training in the United States.

Zero Suicide Quality Improvement: Developmental and Pandemic-Related Patterns in Youth at Risk for Suicide Attempts

ABSTRACT The Zero Suicide (ZS) approach to health system quality improvement (QI) aspires to reduce/eliminate suicides through enhancing risk detection and suicide prevention services. This first report from our randomized trial evaluating a stepped care for suicide prevention intervention within a health system conducting ZS-QI describes (1) our screening and case identification process, (2) variation among adolescents versus young adults, and (3) pandemic-related patterns during the first COVID-19 pandemic year. Between April 2017 and January 2021, youths aged 12–24 years with elevated suicide risk were identified through an electronic health record (EHR) case-finding algorithm followed by direct assessment screening to confirm risk. Eligible/enrolled youth were evaluated for suicidality, self-harm, and risk/protective factors. Case finding, screening, and enrollment yielded 301 participants showing suicide risk indicators: 97% past-year suicidal ideation, 83% past suicidal behavior; and 90% past non-suicidal self-injury (NSSI). Compared to young adults, adolescents reported more past-year suicide attempts (47% vs. 21%, p < .001) and NSSI (past 6 months, 64% vs. 39%, p < .001); less depression, anxiety, posttraumatic stress, and substance use; and greater social connectedness. Pandemic onset was associated with lower participation of racial-ethnic minority youths (18% vs. 33%, p < .015) and lower past-month suicidal ideation and behavior. Results support the value of EHR case-finding algorithms for identifying youths with potentially elevated risk who could benefit from suicide prevention services, which merit adaptation for adolescents versus young adults. Lower racial-ethnic minority participation after the COVID-19 pandemic onset underscores challenges for services to enhance health equity during a period with restricted in-person health care, social distancing, school closures, and diverse stresses.

Abstract P1-05-21: Change in breast cancer detection method, stage at diagnosis and treatment during the COVID-19 Pandemic: 2019-2021

Abstract Objective: Identify changes in breast cancer detection method, stage at diagnosis and treatment prior to, during and after stay-at-home orders and restricted health care access due to COVID-19. Methods: Statistical comparison of detection method (patient (PtD), mammography (MamD) or other), Anatomic TNM Stage 8 (0-IV) and invasive BC treatment change over time by three time periods (time 1: 2019+Q1 2020; time 2: Q2-Q4 2020; time 3: 2021) using chi-square analysis in an institutional retrospective cohort of first primary breast cancer (BC) patients (n=1799), years 2019-2021. Results: In the years prior to the study, 2016-2019, there was no difference in detection method or stage at diagnosis by year with 682 to 733 newly diagnosed BC annually (p=.462). In 2020 (n=535) and 2021 (n=582) annual diagnosed cases dropped 22% and 15% from 2019 levels. Compared to time 1, time 2 MamD BC dropped significantly (64% to 58%) with a subsequent increase in MamD BC to 70% in time 3 (p &amp;lt; .001) creating a U-shaped curve for MamD over time. PtD BC increased in time 2 from 30% to 36% but declined in time 3 to 25% (p &amp;lt;.001). Concurrently, stage at diagnosis shifted from time 1 to time 2 with stage 0 and I declining [stage 0: 21% to 16%, stage I: 40% to 38%] and stage II and IV increasing [stage II: 28% to 33%, stage IV: 2% to 4% stage IV] (p&amp;lt;.001). Subsequently in 2021 stage shifted again with an increase in stage 0 to 22% and stage I to 45% and a decline in stage II (33% to 24%), III (9% to 7%) and IV (4% to 2%) (p&amp;lt;.001). Combining stage 0 and I, the percentage of lower stage BC declined from 61% to 54% and increased to 67% in time 3 (2021) when health services became more readily accessible. There was no change in type of surgery for invasive breast cancer (stage I-III, n=1386) with equivalent numbers of breast conserving surgery (58%), subcutaneous mastectomy (24%) and mastectomy (18%) over the time period. Chemotherapy treatment rates for invasive BC did not change (38%). Radiation therapy increased from 66% (time 1: 2019+Q1 2020) to 73% (time 2: Q2-Q4 2020) then back to 64% in time 3: 2021 (p=.007) independent of surgery type but concordant with an increase in stage IA and stage IIB BC among invasive breast cancer cases in time 2: Q2-Q4 2020 (p&amp;lt;.001). Likewise, neoadjuvant therapy increased and then declined from 33% to 38% to 29% from time 1 to time 3 (p&amp;lt;.001). Conclusions: Number of diagnosed BC cases fell after the first quarter of 2020 during the time of COVID-19 related shut downs and decreased access to health services. During the Q2-Q4 2020 time period mammography detected BC declined with a relative increase in patient detected breast cancer. When mammography detection declined, BC stage at diagnosis shifted to higher stage concurrent with increased rates of radiation and neoadjuvant therapy. In 2021, the relative increase in mammography detected BC indicates a return to more normal screening patterns with a catch up for screening lost in the prior year due to access limitations. In the third time period: 2021, with the return to prior levels of mammography detected breast cancer, stage shifted back to pre-pandemic expected distribution and the excess treatment with radiation and neoadjuvant therapy declined to previously observed levels. Although the changes in detection method, stage and treatment did not persist they were statistically significant and could represent a need for re-establishing pre-pandemic screening behavior. Table 1 Detection Method by COVID Pandemic Diagnosis Time Periods: 2019-2021 (N=1799). Citation Format: Judith A. Malmgren, Mary Atwood, Henry Kaplan. Change in breast cancer detection method, stage at diagnosis and treatment during the COVID-19 Pandemic: 2019-2021 [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P1-05-21.

Narrative Sense-Making During COVID-19: Using Stories to Understand Birth in a Global Pandemic

ABSTRACT Women who gave birth in the spring and summer of 2020 contended with a host of challenging factors. In addition to facing pregnancy, labor, and delivery during an emerging global pandemic, women grappled with health care restrictions that altered their birth experience. To explore how women made sense of their birth during COVID-19, we analyzed written narratives from 71 women who gave birth in the United States from March to July 2020. Based on tenets of communicated narrative sense-making, the themes that emerged from our data suggest that women framed the role of the pandemic as either completely overshadowing their birth experience or as an inconvenience. Women also wrote about threats to their agency as patients, mothers, and caregivers, as well as the evolving emotional toll of the pandemic that often prompted feelings of fear and sadness, along with self-identified anxiety and depression. We discuss these findings in light of the literature on birth stories as essential sites of narrative sense-making for women and their families.

Using Digital Health Technology to Prevent and Treat Diabetes.

Using Digital Health Technology to Prevent and Treat Diabetes.

Evaluating the Implementation of the GREAT4Diabetes WhatsApp Chatbot to Educate People With Type 2 Diabetes During the COVID-19 Pandemic: Convergent Mixed Methods Study.

BackgroundIn South Africa, diabetes is a leading cause of morbidity and mortality, which was exacerbated during the COVID-19 pandemic. Most education and counseling activities were stopped during the lockdown, and the GREAT4Diabetes WhatsApp Chatbot was innovated to fill this gap.ObjectiveThis study aimed to evaluate the implementation of the chatbot in Cape Town, South Africa, between May and October 2021.MethodsConvergent mixed methods were used to evaluate the implementation outcomes: acceptability, adoption, appropriateness, feasibility, fidelity, cost, coverage, effects, and sustainability. Quantitative data were derived from the chatbot and analyzed using the SPSS. Qualitative data were collected from key informants and analyzed using the framework method assisted by Atlas-ti. The chatbot provided users with 16 voice messages and graphics in English, Afrikaans, or Xhosa. Messages focused on COVID-19 infection and self-management of type 2 diabetes.ResultsThe chatbot was adopted by the Metro Health Services to assist people with diabetes who had restricted health care during the lockdown and were at a higher risk of hospitalization and death from COVID-19 infection. The chatbot was disseminated via health care workers in primary care facilities and local nonprofit organizations and via local media and television. Two technical glitches interrupted the dissemination but did not substantially affect user behavior. Minor changes were made to the chatbot to improve its utility. Many patients had access to smartphones and were able to use the chatbot via WhatsApp. Overall, 8158 people connected with the chatbot and 4577 (56.1%) proceeded to listen to the messages, with 12.56% (575/4577) of them listening to all 16 messages, mostly within 32 days. The incremental setup costs were ZAR 255,000 (US $16,876) and operational costs over 6 months were ZAR 462,473 (US $30,607). More than 90% of the users who listened to each message found them useful. Of the 533 who completed the whole program, 351 (71.1%) said they changed their self-management a lot and 87.6% (369/421) were more confident. Most users changed their lifestyles in terms of diet (315/414, 76.1%) and physical activity (222/414, 53.6%). Health care workers also saw benefits to patients and recommended that the service continues. Sustainability of the chatbot will depend on the future policy of the provincial Department of Health toward mobile health and the willingness to contract with Aviro Health. There is the potential to go to scale and include other languages and chronic conditions.ConclusionsThe chatbot shows great potential to complement traditional health care approaches for people with diabetes and assist with more comprehensive patient education. Further research is needed to fully explore the patient’s experience of the chatbot and evaluate its effectiveness in our context.

“Bring me sunshine, bring me (physical) strength”: The case of dementia. Designing and implementing a virtual reality system for physical training during the COVID-19 pandemic

People living with Dementia (PwD) are amongst the most vulnerable populations in society, often depending on caregivers for their quality of life (QoL). Emerging research confirms the need for technological solutions to support non-pharmacological interventions that can enhance the QoL of PwD. This paper posits that Virtual Reality (VR) is a useful technology for boosting the physical training of PwD. In a study with PwD, we compared the conventional physical training PwD receive at a nursing home, against Semi Immersive VR (SIVR) and Fully Immersive VR (FIVR) training paradigms. We recorded the emotional behaviour, task-specific metrics, and level of independence of PwD during the training. The presence and usability of the systefm by both medical staff and PwD was also assessed. Results indicated that FIVR can improve the training of PwD leading to more accurate execution of the exercises while preventing external distractions. Beyond the findings, this article discusses the opportunities, challenges, along with the feasibility and acceptability of VR, to facilitate physical training for PwD who reside in restricted health care environments.

The Effect of the COVID-19 Pandemic on the Social Inequalities of Health Care Use in Hungary: A Nationally Representative Cross-Sectional Study.

Background: The social representation of restricted health care use during the COVID-19 pandemic has not been evaluated properly yet in Hungary. Objective: Our study aimed to quantify the effect of COVID-19 pandemic measures on general practitioner (GP) visits, specialist care, hospitalization, and cost-related prescription nonredemption (CRPNR) among adults, and to identify the social strata susceptible to the pandemic effect. Methods: This cross-sectional study was based on nationally representative data of 6611 (Nprepandemic = 5603 and Npandemic = 1008) adults. Multivariable logistic regression models were applied to determine the sociodemographic and clinical factors influencing health care use by odds ratios (ORs) along with the corresponding 95% confidence intervals (CI). To identify the social strata susceptible to the pandemic effect, the interaction of the time of data collection with the level of education, marital status, and Roma ethnicity, was tested and described by iORs. Results: While the CRPNR did not change, the frequency of GP visits, specialist care, and hospitalization rates was remarkably reduced by 22.2%, 26.4%, and 6.7%, respectively, during the pandemic. Roma proved to be not specifically affected by the pandemic in any studied aspect, and the pandemic restructuring of health care impacted the social subgroups evenly with respect to hospital care. However, the pandemic effect was weaker among primary educated adults (iORGP visits, high-school vs. primary-education = 0.434; 95% CI 0.243–0.776, ORspecialist visit, high-school vs. primary-education = 0.598; 95% CI 0.364–0.985), and stronger among married adults (iORGP visit, widowed vs. married = 2.284; 95% CI 1.043–4.998, iORspecialist visit, widowed vs. married = 1.915; 95% CI 1.157–3.168), on the frequency of GP visits and specialist visits. The prepandemic CRPNR inequality by the level of education was increased (iORhigh-school vs. primary-education = 0.236; 95% CI 0.075–0.743). Conclusion: Primary educated and widowed adults did not follow the general trend, and their prepandemic health care use was not reduced during the pandemic. This shows that although the management of pandemic health care use restrictions was implemented by not increasing social inequity, the drug availability for primary educated individuals could require more support.

Impacto da pandemia COVID-19 na prática clínica profissional de terapia ocupacional

Abstract Introduction A series of restrictive health care measures emerged limiting actions that include the work of occupational therapists and proposing adaptations to provide care to people who require it. Objective To identify the impact and adaptations in the care of Occupational Therapy clinical professionals due to the COVID-19 pandemic in Colombia. Methods Cross-sectional study that applies an online questionnaire in January-February 2021 to Colombian occupational therapists in clinical/hospital settings. Sociodemographic variables, clinical professional practice, and the impact of COVID-19 in terms of job loss, modifications, and adaptations for the intervention were analyzed. Descriptive analyzes are performed by variable and a Chi-square test of independence is applied for associations between variables. Results 382 Colombian occupational therapists participated. The average time of professional practice was 10.8 years. Of the total, 89% worked before the pandemic and continued their work, and at least 64% claimed that they lost their job due to COVID-19. Of those who continued to work, 20.5% did so virtually and 79.5% in a face-to-face clinic. On a virtual level, 89% did it due to a job requirement and at least 53% did it without training in telehealth. In face-to-face, 68% reported restrictions in the actions practiced and decreased referrals to therapy. Conclusions The pandemic has resized the actions of the occupational therapist, has modified the means and forms of intervention, allowing the reinvention of their work.

COVID-19-Related Downscaling of In-Hospital Liver Care Decreased Patient Satisfaction and Increased Liver-Related Mortality.

The coronavirus disease 2019 (COVID‐19) pandemic necessitated down‐scaling of in‐hospital care to prohibit the spread of severe acute respiratory syndrome–coronavirus‐2. We (1) assessed patient perceptions on quality of care by telesurvey (cohort 1) and written questionnaire (cohort 2), and (2) analyzed trends in elective and nonelective admissions before (December 2019 to February 2020) and during (March to May 2020) the COVID‐19 pandemic in Austria. A total of 279 outpatients were recruited into cohort 1 and 138 patients into cohort 2. All admissions from December 2019 to May 2020 to the Division of Gastroenterology/Hepatology at the Vienna General Hospital were analyzed. A total of 32.6% (n = 91 of 279) of cohort 1 and 72.5% (n = 95 of 131) of cohort 2 had telemedical contact, whereas 59.5% (n = 166 of 279) and 68.2% (n = 90 of 132) had face‐to‐face visits. A total of 24.1% (n = 32 of 133) needed acute medical help during health care restrictions; however, 57.3% (n = 51 of 89) reported that contacting their physician during COVID‐19 was difficult or impossible. Patient‐reported satisfaction with treatment decreased significantly during restrictions in cohort 1 (visual analog scale [VAS] 0‐10: 9.0 ± 1.6 to 8.6 ± 2.2; P < 0.001) and insignificantly in cohort 2 (VAS 0‐10: 8.9 ± 1.6 to 8.7 ± 2.1; P = 0.182). Despite fewer hospital admissions during COVID‐19, the proportion of nonelective admissions (+6.3%) and intensive care unit admissions (+6.7%) increased. Patients with cirrhosis with nonelective admissions during COVID‐19 had significantly higher Model for End‐Stage Liver Disease (MELD) (25.5 [14.2] vs. 17.0 [interquartile range: 8.8]; P = 0.003) and ΔMELD (difference from last MELD: 3.9 ± 6.3 vs. 8.7 ± 6.4; P = 0.008), required immediate intensive care more frequently (26.7% vs. 5.6%; P = 0.034), and had significantly increased 30‐day liver‐related mortality (30.0% vs. 8.3%; P = 0.028). Conclusion: The COVID‐19 pandemic’s effects on quality of liver care is evident from decreased patient satisfaction, hospitalization of sicker patients with advanced chronic liver disease, and increased liver‐related mortality. Strategies for improved telemedical liver care and preemptive treatment of cirrhosis‐related complications are needed to counteract the COVID‐19‐associated restrictions of in‐hospital care.

The impact of COVID-19 on palliative care for people with Parkinson’s and response to future pandemics

ABSTRACT Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson’s disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson’s (PwP), particularly elderly, frail, and with comorbidities. Areas covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly – as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics. Expert opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms – both in the short- and long-term, (Long-COVID) and calls for specific, personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.

Behavioural change in Prader-Willi syndrome during COVID-19 pandemic.

BackgroundPrader–Willi syndrome (PWS) is a rare genetic disorder that in many cases is associated with mental health disorders, in addition to characteristic symptoms such as hyperphagia. The current Sars‐CoV‐2 coronavirus pandemic has led to massive restrictions in health care and social life worldwide. People with PWS represent a particularly vulnerable population group to these restrictions, with unknown impact on their mental health.MethodsWe conducted an online questionnaire to assess the impact of the restrictions associated with the COVID‐19 pandemic on the mental health of people with PWS.ResultsOne hundred and eight caregivers completed the survey about individuals with PWS. Individuals with PWS > 6 years (n = 89) were included for evaluation with regard to psychopathological change. Respondents frequently reported an increase in psychopathological symptoms associated with PWS during the lockdown, with 51.7% reporting increased temper outbursts, 43.8% showing signs of sadness, 38.2% being anxious, 55.0% more irritable, and 39.3% showing more food seeking behaviour. Adjusted for the type of accommodation food seeking behaviour and irritability is increased to a significantly lesser extent in people with PWS accommodated in specialised care facilities compared with those living in their family home. No significant difference could be found between the sexes.ConclusionThe COVID‐19 pandemic has had a significant effect on the mental health of individuals with PWS, evidenced by an increase in behaviours associated with PWS, including temper outbursts, food‐seeking, and irritability, which again underlines their need for specialised care. Individuals living with their families were particularly vulnerable, indicating that they and their families are in special need of support.

Abstract PS2-27: Benefits of a rapid diagnostic centre for breast cancer care during the COVID-19 pandemic

Abstract BACKGROUND: Changes in access to breast imaging and suspension of mammographic screening during the COVID-19 pandemic had the potential to significantly delay breast cancer diagnostic pathways. The Gattuso Rapid Diagnostic Centre (GRDC) is an innovative clinic that provides a patient-centered approach for investigation of suspicious breast abnormalities and sees approximately 1200 patients per year. The aim of this study was to assess the impact of the pandemic on patient volumes and imaging at this high-volume breast rapid diagnostic centre. METHODS: A retrospective review of consecutive patients who presented to the GRDC from the start of the pandemic (March 12, 2020) until May 31, 2020 was performed. The number of patients, reason for referral, cancer detection rate (CDR), and waiting time from appointment to diagnosis were evaluated and compared to a corresponding time period in 2019. RESULTS: A total of 168 new patients presented to the GRDC during the study period, corresponding to a 32.3% decrease in the number of patients compared to 2019 (n=248). Seventy-eight patients (46.4%) were referred due to the presence of a clinical palpable abnormality, which represented an increase of 13.8% (n=81 [32.7%] in 2019; p=0.005). Out of 168 patients, 69 were diagnosed with a breast malignancy, yielding a CDR of 41.1% during the pandemic versus 111 patients in 2019 (CDR of 44.8%; p= 0.456). The average time from appointment at GRDC to diagnosis was lower at 0.76 days vs 1.21 days in 2019. The rate of same day diagnosis was significantly higher at 39.5% vs 27.0% in 2019 (p=0.008). Twenty-five patients (14.9%) received neoadjuvant systemic therapy compared to 16 patients (6.5%) in 2019 (p=0.005). CONCLUSION: There were fewer patients presenting for breast investigations during the pandemic period and a significant increase in the percentage of patients with palpable masses as the cause for referral with no appreciable change in the CDR. The presence of a rapid diagnostic breast center enabled patients with concerning breast symptoms to access and receive expedited assessment. This ensured patients did not undergo diagnostic delays despite the health care restrictions that emerged during the COVID-19 pandemic. Citation Format: Gary Ko, Sharmy Sarvanantham, Sangita Sequeira, Vrutika Prajapati, David R. McCready, Vivianne Freitas, Tulin D. Cil. Benefits of a rapid diagnostic centre for breast cancer care during the COVID-19 pandemic [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS2-27.

Reproductive Technologies and Free Speech.

The Supreme Court and lower courts have not articulated a clear or consistent framework for First Amendment analysis of speech restrictions in health care and with respect to abortion. After offering a coherent doctrine for analysis of speech restrictions in the doctor-patient relationship, this piece demonstrates how potential legislation restricting patient access to information from reproductive testing intended to limit "undesirable" reproductive choices would violate the First Amendment.