Providing trauma-informed pediatric care for underserved populations: Reflections on a teaching intervention

National organizations call for providing trauma-informed care (TIC) to those who have experienced adverse childhood experiences (ACEs) and to the population as a whole. All providers and staff are at risk for experiencing stress and burnout when they care for patients with multiple complex needs and insufficient resources. All are at risk but not all develop burnout. This study shares findings from a pilot project to implement training on ACEs and toxic stress in a busy urban pediatric primary care practice. Using a mixed-methods approach, we assessed pre and post self-reported knowledge and attitudes via surveys ( n = 52), baseline in-depth interviews ( n = 16), focus groups (three groups, n = 36), and follow-up interviews ( n = 13). After training, staff reported a marginally significant increase in rating the office as doing a good job meeting the needs of families around childhood trauma (72% vs. 46%, p = 0.057). Key themes from baseline in-depth interviews and focus groups identified the following: (1) pervasiveness of trauma and adversity among families in the practice, (2) empathy for families with significant social needs, (3) feelings of frustration to alleviate stressors identified during visits, (4) need for social support and coping mechanisms to alleviate workplace stress, and (5) receptiveness to enhance knowledge and understanding. Key themes from follow-up interviews and focus groups highlighted the impact of compassion fatigue and strategies to promote self-care. We discuss these findings and challenges in relation to providing TIC and professional development.

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The Impact of the Coronavirus Disease (COVID-19) on the Health and Social Needs of Sex Workers in Singapore

Archives of Sexual Behavior ◽

10.1007/s10508-021-01951-8 ◽

2021 ◽

Author(s):

Rayner Kay Jin Tan ◽

Vanessa Ho ◽

Sherry Sherqueshaa ◽

Wany Dee ◽

Jane Mingjie Lim ◽

...

Keyword(s):

Food Insecurity ◽

Sex Work ◽

Sex Workers ◽

Social Needs ◽

Medical Services ◽

Substantial Impact ◽

Sex Worker ◽

Permanent Resident ◽

The Impact ◽

Depth Interviews

AbstractWe evaluated the impact of the coronavirus disease (COVID-19) on the sex work industry and assessed how it has impacted the health and social conditions of sex workers in Singapore. We conducted a sequential exploratory mixed methods study amidst the COVID-19 pandemic from April to October 2020, including in-depth interviews with 24 stakeholders from the sex work industry and surveyor-administered structured surveys with 171 sex workers. COVID-19 had a substantial impact on sex workers' income. The illegality of sex work, stigma, and the lack of work documentation were cited as exclusionary factors for access to alternative jobs or government relief. Sex workers had experienced an increase in food insecurity (57.3%), housing insecurity (32.8%), and sexual compromise (8.2%), as well as a decrease in access to medical services (16.4%). Being transgender female was positively associated with increased food insecurity (aPR = 1.23, 95% CI [1.08, 1.41]), housing insecurity (aPR = 1.28, 95% CI [1.03, 1.60]), and decreased access to medical services (aPR = 1.74, 95% CI [1.23, 2.46]); being a venue-based sex worker was positively associated with increased food insecurity (aPR = 1.46, 95% CI [1.00, 2.13]), and being a non-Singaporean citizen or permanent resident was positively associated with increased housing insecurity (aPR = 2.59, 95% CI [1.73, 3.85]). Our findings suggest that COVID-19 has led to a loss of income for sex workers, greater food and housing insecurity, increased sexual compromise, and reduced access to medical services for sex workers. A lack of access to government relief among sex workers exacerbated such conditions. Efforts to address such population health inequities should be implemented.

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Perspectives on the psychological and emotional burden of having gestational diabetes amongst low-income women in Cape Town, South Africa

BMC Women s Health ◽

10.1186/s12905-020-01093-4 ◽

2020 ◽

Vol 20 (1) ◽

Author(s):

Lorrein Shamiso Muhwava ◽

Katherine Murphy ◽

Christina Zarowsky ◽

Naomi Levitt

Keyword(s):

Mental Health ◽

South Africa ◽

Gestational Diabetes ◽

Focus Groups ◽

Lived Experiences ◽

Cape Town ◽

Psychological Burden ◽

Pregnancy And Postpartum ◽

The Impact ◽

Depth Interviews

Abstract Background The diagnosis of gestational diabetes mellitus (GDM) may affect women’s mental wellbeing, functioning and quality of life, with potentially negative effects on treatment adherence. Identifying and addressing the psychological and emotional needs of women with GDM, could have benefits for sustainable long-term behavioural change following the affected pregnancy. This study explored the lived experiences of women with GDM and the impact of GDM on their experience of pregnancy and sense of well-being. Methods Purposive sampling was used to recruit women who had been diagnosed with GDM in their previous pregnancy and received antenatal care at a tertiary hospital in Cape Town, South Africa. This was a descriptive qualitative study using a combination of focus groups and in-depth interviews for an in- depth exploration of women’s lived experiences of GDM, their context and perceived needs. Data analysis followed an iterative thematic analysis approach. Results Thirty-five women participated in nine focus groups and five in-depth interviews. Women discussed the emotional and psychological burden of having GDM, highlighting (i) their initial emotional reactions to receiving a GDM diagnosis, (ii) their experience of adjusting to the constraints of living with GDM (iii) their feelings of apprehension about childbirth and their maternal role and (iv) their feelings of abandonment in the post-partum period once the intensive support from both health system and family ends. Conclusions The current biomedical model used in the management of GDM, is highly foetal-centric and fails to acknowledge important psychological factors that contribute to women’s overall wellbeing and experience of pregnancy. These results demonstrate the importance of incorporating mental health support in the management and care for women with GDM in public health services, along with facilitating emotional support from partners and family members. Based on our findings, we recommend routine mental health and psychosocial vulnerability screening and monitoring for women diagnosed with GDM throughout pregnancy and postpartum to improve prognoses.

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How Hands-On Pain Skills Intensive Trainings Complement ECHO Pain and Opioid Management Programs: A Program Evaluation with the Indian Health Service

Pain Medicine ◽

10.1093/pm/pnaa151 ◽

2020 ◽

Vol 21 (9) ◽

pp. 1769-1778

Author(s):

Joanna G Katzman ◽

Kathleen Gygi ◽

Robin Swift ◽

George Comerci ◽

Snehal Bhatt ◽

...

Keyword(s):

Chronic Pain ◽

Health Service ◽

Focus Groups ◽

Indian Health Service ◽

Opioid Use ◽

Prescribing Practices ◽

Indian Health ◽

Hands On ◽

The Impact

Abstract Objective To evaluate the impact of Pain Skills Intensive trainings (PSIs) as a complement to the Indian Health Service (IHS) and the Chronic Pain and Opioid Management TeleECHO Program (ECHO Pain) collaboration. Design On-site PSIs conducted over two to three days were added to complement ECHO Pain at various IHS areas to enhance pain skills proficiency among primary care teams and to expand the reach of ECHO collaboration to ECHO nonparticipants. Setting This evaluation focuses on two PSI trainings offered to IHS clinicians in Albuquerque, New Mexico, and Spokane, Washington, in 2017. Methods The mixed-methods design comprises CME surveys and focus groups at the end of training and 12 to 18 months later. Quality of training and perceived competence were evaluated. Results Thirty-eight participants attended the two PSI workshops. All provided CME survey results, and 28 consented to use of their postsession focus group results. Nine clinicians participated in the virtual follow-up focus groups. IHS clinicians rated the PSIs highly, noting their hands-on and interdisciplinary nature. They reported above-average confidence in their skills. Follow-up focus groups indicated they were pursuing expanded options for their patients, consulting other clinicians, serving as pain consultants to their peers, and changing prescribing practices clinic-wide. However, rurality significantly limits access to ancillary and complementary services for many. Clinicians reported the need for additional training in integrating behavioral health into their practice. Conclusions Hands-on pain skills and information on medication-assisted treatment (MAT) are critical to the successful treatment of chronic pain and opioid use disorder. The PSIs provide clinicians with critical competencies in assessment and screening, pain management, and communication skills, complementing required IHS training and telementoring from ECHO Pain.

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Users’ experiences of a pragmatic diabetes prevention intervention implemented in primary care: qualitative study

BMJ Open ◽

10.1136/bmjopen-2018-028491 ◽

2019 ◽

Vol 9 (8) ◽

pp. e028491 ◽

Cited By ~ 1

Author(s):

Navneet Aujla ◽

Thomas Yates ◽

Helen Dallosso ◽

Joe Kai

Keyword(s):

Primary Care ◽

At Risk ◽

Diabetes Prevention ◽

Resource Constraints ◽

Diabetes Risk ◽

Care Practice ◽

Behavioural Intervention ◽

Specific Information ◽

Prevention Intervention

ObjectivesTo explore service-user and provider experience of the acceptability and value of the Let’s Prevent Diabetes programme, a pragmatic 6-hour behavioural intervention using structured group education, introduced into primary care practice.DesignQualitative interview-based study with thematic analysis.SettingPrimary care and community.ParticipantsPurposeful sample of 32 participants, including 22 people at high risk of diabetes who either attended, defaulted from or declined the intervention; and 10 stakeholder professionals involved in implementation.ResultsParticipants had low prior awareness of their elevated risk and were often surprised to be offered intervention. Attenders were commonly older, white, retired and motivated to promote their health; who found their session helpful, particularly for social interaction, raising dietary awareness, and convenience of community location. However attenders highlighted lack of depth, repetition within and length of session, difficulty meeting culturally diverse needs and no follow-up as negative features. Those who defaulted from, or who declined the intervention were notably apprehensive, uncertain or unconvinced about whether they were at risk of diabetes; sought more specific information about the intervention, and were deterred by its group nature and day-long duration, with competing work or family commitments. Local providers recognised inadequate communication of diabetes risk to patients. They highlighted significant challenges for implementation, including resource constraints, and facilitation at individual general practice or locality level.ConclusionsThis pragmatic diabetes prevention intervention was acceptable in practice, particularly for older, white, retired and health-motivated people. However, pre-intervention information and communication of diabetes risk should be improved to increase engagement and reduce potential fear or uncertainty, with closer integration of services, and more appropriate care pathways, to facilitate uptake and follow-up. Further development of this, or other interventions, is needed to enable wider, and more socially diverse, engagement of people at risk. Balancing a locality and individual practice approach, and how this is resourced are considerations for long-term sustainability.

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Increasing uptake of colon cancer screening in a medically underserved population with the addition of blood-based testing

10.21203/rs.3.rs-75393/v1 ◽

2020 ◽

Author(s):

Stephanie Ioannou ◽

Kyle Sutherland ◽

Daniel A. Sussman ◽

Amar R. Deshpande

Keyword(s):

Colon Cancer ◽

Cancer Screening ◽

Underserved Populations ◽

Colon Cancer Screening ◽

Medically Underserved ◽

Screening Methods ◽

Medically Underserved Populations ◽

Medically Underserved Population ◽

The Impact

Abstract Adherence to colorectal cancer screening is suboptimal, particularly in medically underserved populations. We report here on our assessment of the impact of offering a blood-based screening test on screening rates in a health fair setting. Patients attending student-run health fairs who met colon cancer screening guideline eligibility criteria received a recommendation to attend that screening station. Patients were offered recommended accepted screening methods, and if they declined they were offered blood-based testing. Screening rates, test outcomes, and the rate of follow up completion of colonoscopy were measured and compared with historic screening outcomes. Of 1401 screening eligible patients, 640 (45.7%) attended the colon cancer screening station, of whom 460 were eligible for assessment. Amongst these, none selected colonoscopy, 30 (6.5%) selected FIT, and 430 (93.5%) selected blood-based testing. Only 2 patients returned the FIT. For the blood test, 88 were positive, and 20 of these received a follow up colonoscopy. Based on this assessment, blood-based testing is an effective method to increase screening rates in medically underserved populations, though efforts to further improve access to follow up colonoscopy are necessary.

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To Include, or Not Include, that is the Question: An Empirical Analysis of Dealing with Patients who are Lost to Follow-up when Developing Prognostic Models Using a Cohort Design

10.21203/rs.3.rs-54715/v1 ◽

2020 ◽

Author(s):

Jenna M Reps ◽

Peter Rijnbeek ◽

Alana Cuthbert ◽

Patrick B Ryan ◽

Nicole Pratt ◽

...

Keyword(s):

At Risk ◽

Synthetic Data ◽

Model Performance ◽

Test Set ◽

Loss To Follow Up ◽

Using Data ◽

Lost To Follow Up ◽

The Impact ◽

Prediction Problems

Abstract Background: Researchers developing prediction models are faced with numerous design choices that may impact model performance. One of the main decisions is how to include patients who are lost to follow-up. In this paper we perform a large-scale empirical evaluation investigating the impact of this decision. In addition, we aim to provide guidelines for how to deal with loss to follow-up. Methods: We generate a synthetic dataset with complete follow-up and simulate loss to follow-up based either on random selection or on selection based on comorbidity. We investigate four simple strategies for developing models using data containing some patients with loss to follow-up. Three strategies employ a binary classifier with data that: i) include all patients (including those lost to follow-up), ii) exclude all patients lost to follow-up or iii) only exclude patients lost to follow-up who do not have the outcome before being lost to follow-up. The fourth strategy uses a survival model with data that include all patients. In addition to our synthetic data study, we empirically evaluate the discrimination and calibration performance of these strategies across 21 prediction problems using real-world data. Results: The synthetic data study results show that excluding patients lost to follow-up can introduce bias when loss to follow-up is common and does not occur at random. However, when loss to follow-up was completely at random, the choice of addressing it had negligible impact on the model performance. Our empirical results showed that the four design choices investigated to deal with loss to follow-up resulted in comparable performance when the time-at-risk was 1-year, but demonstrated differential bias when we looking into 3-year time-at-risk. Removing patients who are lost to follow-up before the outcome but keeping patients who are loss to follow-up after the outcome can bias a model and should be avoided. Conclusion: Based on this study we therefore recommend i) developing models using data that includes patients that are lost to follow-up and ii) evaluate the discrimination and calibration of models twice: on a test set including patients lost to follow-up and a test set excluding patients lost to follow-up.

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Body Mass Index and Survival of Patients with Lymphoma

Blood ◽

10.1182/blood-2020-139402 ◽

2020 ◽

Vol 136 (Supplement 1) ◽

pp. 2-3

Author(s):

Dai Chihara ◽

Melissa C. Larson ◽

Dennis P. Robinson ◽

Carrie A. Thompson ◽

Matthew J. Maurer ◽

...

Keyword(s):

Body Mass Index ◽

At Risk ◽

Board Of Directors ◽

Body Mass ◽

Research Funding ◽

B Cell Lymphoma ◽

The United States ◽

Advisory Committees ◽

The Impact

Background: Obesity is increasing worldwide, with the highest prevalence in the United States. High or low body mass index (BMI) is a well-established risk factor for increased all-cause mortality and also has been associated with cancer-specific mortality. However, the impact of BMI on survival following diagnosis with lymphoma currently remains controversial. We leveraged a prospective cohort of lymphoma patients to assess the relationship of BMI two years prior to diagnosis (BMI-2), at diagnosis (BMI-dx), and three-years post-diagnosis (BMI+3) with lymphoma-specific survival (LSS) as the primary endpoint and with event-free survival (EFS) and overall survival (OS) as secondary endpoints. Patient and Method: Patients were prospectively enrolled at lymphoma diagnosis to the SPORE Molecular Epidemiology Resource (MER) cohort at Mayo Clinic and University of Iowa from 2002-2015. BMI-2 and BMI+3 were self-reported in patient questionnaires, while BMI-dx was extracted from the medical chart. Patients with extreme BMI (BMI <14 and BMI ≥50) were excluded from the analysis. BMI change from BMI-2 to BMI-dx and from BMI-dx to BMI+3 was categorized as no change (-5% to 5%), decrease (>-5%), and increase (>+5%). Person-time at risk was assessed from lymphoma diagnosis until death or last follow-up, except for analyses of BMI change from BMI-dx to BMI+3, which started person-time at risk when the 3-year (+/- 6 months) follow-up questionnaire was returned. Cause of death was assigned by a study clinician. For all lymphoma patients combined and in the most common subtypes, we evaluated the association of BMI at each time point and change in BMI with EFS, LSS, and OS using hazard ratios (HRs) and 95% confidence intervals (CI) from multivariable adjusted Cox models. Results: A total of 4,009 lymphoma patients (including 670 diffuse large B-cell lymphoma [DLBCL], 689 follicular lymphoma [FL] and 1018 chronic lymphocytic leukemia/small lymphocytic lymphoma [CLL/SLL] and 1,632 others) with data on BMI-dx were included. Among them, 2,955 patients had BMI-2 and 2,004 had BMI+3 and were evaluable for change in BMI. The median age of all patients at diagnosis was 61 years (range 18-92 years), and 94% of patients had ECOG performance status <2. At the time of diagnosis, 28% were normal weight (BMI 18.5-25), 1% were underweight (BMI <18.5), 39% were overweight (BMI 25-30) and 32% were obese (BMI ≥30). With a median follow-up of 108 months from diagnosis (IQR 83-143 months), 1320 deaths were observed, 48% of which were due to lymphoma. Patients with FL who were obese at BMI-2 had significantly shorter LSS (HR: 3.02, 95%CI: 1.43-6.41, p=0.004). Associations between obesity at BMI-2 and LSS were not evident for DLBCL (HR: 1.04, 95%CI: 0.62-1.76, p=0.879) or CLL/SLL (HR: 1.10, 95%CI: 0.71-1.70, p=0.668) (Table). BMI-dx was not associated with LSS in any lymphoma patients, except that DLBCL patients who were underweight at BMI-dx (n=10) experienced shorter LSS (HR: 3.52, 95%CI: 1.22-10.1, p=0.020). This correlated significantly with presence of B symptoms (p=0.004) and may signify aggressive disease. Across all subtypes, >5% decrease in BMI from BMI-2 to BMI-dx was associated with significantly shorter LSS in patients with (HR: 2.02, 95%CI: 1.65-2.48, p<0.001). However, only for FL patients, >5% increase in BMI from BMI-dx to BMI+3 also was associated with significantly shorter LSS in subsequent years (HR: 3.74, 95%CI: 1.30-10.8, p=0.014). The associations reported for LSS generally were similar for EFS and OS. Conclusions: FL patients with obesity prior to diagnosis or who experienced increasing BMI after the diagnosis had significantly shorter LSS. The impact of weight control after the diagnosis of FL patient outcomes warrants investigation. Figure Disclosures Maurer: Celgene / BMS: Research Funding; Kite: Membership on an entity's Board of Directors or advisory committees; Morphosys: Membership on an entity's Board of Directors or advisory committees; Nanostring: Research Funding; Pfizer: Membership on an entity's Board of Directors or advisory committees. Flowers:Leukemia and Lymphoma Society: Membership on an entity's Board of Directors or advisory committees; Denovo Biopharma: Consultancy; Celgene: Consultancy, Research Funding; BeiGene: Consultancy; Kite: Research Funding; Bayer: Consultancy; Eastern Cooperative Oncology Group: Research Funding; Cancer Prevention and Research Institute of Texas: Research Funding; National Cancer Institute: Research Funding; AbbVie: Consultancy, Research Funding; V Foundation: Research Funding; TG Therapeutics: Research Funding; Burroughs Wellcome Fund: Research Funding; Millennium/Takeda: Consultancy, Research Funding; Acerta: Research Funding; Spectrum: Consultancy; Pharmacyclics/Janssen: Consultancy; Karyopharm: Consultancy; OptumRx: Consultancy; Gilead: Consultancy, Research Funding; Genentech, Inc./F. Hoffmann-La Roche Ltd: Consultancy, Research Funding. Cerhan:NanoString: Research Funding; BMS/Celgene: Research Funding.

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Health risk behaviours of stroke patients in the Western Cape, South Africa

South African Journal of Physiotherapy ◽

10.4102/sajp.v64i1.99 ◽

2008 ◽

Vol 64 (1) ◽

Author(s):

D. Biggs ◽

A. Rhoda

Keyword(s):

South Africa ◽

At Risk ◽

Western Cape ◽

Stroke Patients ◽

Face To Face ◽

Lifestyle Choices ◽

The Impact ◽

Depth Interviews ◽

Self Administered Questionnaire

Stroke is a leading cause of death and a major cause of disability globally. Individuals with physical disabilities, including thosewho have suffered a stroke are at risk of secondary complications due to the impact of their disability, which may be exacerbated by their lifestylechoices. The aim of the present study was to determine the health riskbehaviours and factors that influence these behaviours of stroke patients inthe Metropole Region of the Western Cape, South Africa. A cross – sectionalsurvey, utilizing a self-administered questionnaire on a convenient sampleof 417 stroke patients, was used to collect data. A sub-sample of 10 parti-cipants was purposively selected for in-depth, face-to-face interviews.Approximately forty percent (40.3%) of the participants did not engage in physical exercise. While 30.2% smoked only9% abused alcohol. A significant association was found between age and smoking (p<0.002). Information gathered in the in-depth interviews revealed factors that influenced the behaviours of the participants. These factors includedlack of financial resources and lack of access to information. As participants were found to be at risk of secondarycomplications because of poor lifestyle choices, there is a clear need to implement health promotion programmes topromote well-ness enhancing behaviours in order to enhance the quality of health of patients who have suffered astroke in the Western Cape, South Africa.

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General practice referral of ‘at risk’ populations to community leisure services: applying the RE-AIM framework to evaluate the impact of a community-based physical activity programme for inactive adults with long-term conditions

BMC Public Health ◽

10.1186/s12889-019-7701-5 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 2

Author(s):

E. L. Bird ◽

M. S. Y. Biddle ◽

J. E. Powell

Keyword(s):

Physical Activity ◽

At Risk ◽

General Practice ◽

Successful Implementation ◽

Community Based ◽

Long Term Conditions ◽

The Impact ◽

Recruitment Target

Abstract Background In the UK a high proportion of adults with long-term conditions do not engage in regular physical activity. General practice (GP) referral to community-based physical activity is one strategy that has gained traction in recent years. However, evidence for the real-world effectiveness and translation of such programmes is limited. This study aimed to evaluate the individual and organisational impacts of the ‘CLICK into Activity’ programme - GP referral of inactive adults living with (or at risk of) long-term conditions to community-based physical activity. Methods A mixed methods evaluation using the RE-AIM framework was conducted with data obtained from a range of sources: follow-up questionnaires, qualitative interviews, and programme-related documentation, including programme cost data. Triangulation methods were used to analyse data, with findings synthesised across each dimension of the RE-AIM framework. Results A total of 602 individuals were referred to CLICK into Activity physical activity sessions. Of those referred, 326 individuals participated in at least one session; the programme therefore reached 30.2% of the 1080 recruitment target. A range of individual-, social-, and environmental-level factors contributed to initial physical activity participation. Positive changes over time in physical activity and other outcomes assessed were observed among participants. Programme adoption at GP surgeries was successful, but the GP referral process was not consistently implemented across sites. Physical activity sessions were successfully implemented, with programme deliverers and group-based delivery identified as having an influential effect on programme outcomes. Changes to physical activity session content were made in response to participant feedback. CLICK into Activity cost £175,000 over 3 years, with an average cost per person attending at least one programme session of £535. Conclusions Despite not reaching its recruitment target, CLICK into Activity was successfully adopted. Positive outcomes were associated with participation, although low 6- and 12-month follow-up response rates limit understanding of longer-term programme effects. Contextual and individual factors, which may facilitate successful implementation with the target population, were identified. Findings highlight strategies to be explored in future development and implementation of GP referral to community-based physical activity programmes targeting inactive adults living with (or at risk of) long-term conditions.

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COVID-19 and shielding: Experiences of UK patients with lupus and related diseases

Rheumatology Advances in Practice ◽

10.1093/rap/rkab003 ◽

2021 ◽

Author(s):

Melanie Sloan ◽

Caroline Gordon ◽

Elliott Lever ◽

Rupert Harwood ◽

Michael A Bosley ◽

...

Keyword(s):

Well Being ◽

Self Identity ◽

Increased Risk ◽

Social Mixing ◽

Negative Impacts ◽

High Level ◽

The Impact ◽

Depth Interviews ◽

Mixing Behaviour

Abstract Objective The UK’s shielding guidance for the ‘clinically extremely vulnerable’ (CEV) commenced on 23 March 2020 in response to the COVID-19 pandemic. The purpose of this study was to explore the impact of the pandemic and shielding on patients with lupus and related systemic autoimmune rheumatic diseases (SARDs). Methods This was a mixed-methods cohort study (N = 111) including pre-lockdown baseline surveys (March 2020), follow-up surveys (June 2020), and in-depth interviews during July 2020 (N = 25). Results Most participants had a high level of anxiety regarding their mortality risk from COVID-19 and supported the shielding concept. Shielding allocations and communications were perceived as inconsistently applied and delivered. Over half of those not classified as CEV reported feeling abandoned, at increased risk and with no support. Shielding communications increased feelings of being ‘cared about’, yet also increased fear, and the ‘vulnerable’ labelling was perceived by some to damage social- and self-identity. Over 80% of those classified as CEV stated that the classification and subsequent communications had changed their social-mixing behaviour. Despite many negative impacts of COVID-19 and shielding/lockdown being identified, including isolation, fear and reduced medical care, the during-pandemic quantitative data showed increases in most measures of well-being (which was low at both timepoints) from pre-lockdown, including reductions in the impact of fatigue and pain (Ps < 0.001). Conclusion Shielding classifications and communications were generally positively viewed, although perceived as inconsistently delivered and anxiety-provoking. More frequent positively-framed communication and wellbeing support could benefit all SARD patients. Slower-paced ‘lockdown’ lifestyles may confer health/wellbeing benefits for some people with chronic diseases.

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