The Fuld Institute for EBP Community Core: Supporting the Patient Perspective in EBP for Optimal Health and Wellness.

Health information and communication fall within patient preferences in evidence-based practice. Now more than ever, patients and families in the community have free access to "evidence" and healthcare information on the internet. However, is that information trustworthy, and how can we encourage people to use evidence to promote their optimal health and wellness? The recent rise of global spread of mis- and disinformation through social media outlets has affected public health. There is growing recognition that social media platforms provide magnified podiums leading to unfortunate outcomes. While much work has been done during the COVID-19 pandemic to address health misinformation, there is still much more work to do. We must respond to the widespread misinformation as a collective healthcare community to prevent poor healthcare decisions. Urging the public to be alert to information spread, assess the quality of health information (and whether it is evidence-based), and use shared decision-making tools is a path we can travel together.

Perception versus preference: The role of self-assessed risk measures on individual mitigation behaviors during the COVID-19 pandemic.

In the midst of a global pandemic, prevention methods stand as a crucial first step toward addressing the public health crisis and controlling the spread of the virus. However, slowing the spread of the virus hinges on the public's willingness to follow a combination of mitigation practices to avoid contracting and transmitting the disease. In this study, we investigate the factors related to individuals' risk perceptions associated with COVID-19 as well as their general self-assessed risk preferences. We also provide insights regarding the role of risk perceptions and preferences on mitigation behavior by examining the correlation between these risk measures and both the likelihood of following various mitigation practices and total number of practices followed. Although we find both risk perceptions and preferences to be significantly correlated with mitigation behaviors, risk perceptions are correlated with a larger number of practices. Additionally, we find significant heterogeneity in mitigation behaviors across numerous individual and household characteristics. These results can serve as a benchmark for the design and development of interventions to increase awareness and promote higher adoption of mitigation practices.

Preferences for Medical Consultations from Online Providers: Evidence from a Discrete Choice Experiment in the United Kingdom.

BACKGROUND: In the UK, consultations for prescription medicines are available via private providers such as online pharmacies. However, these providers may have lower thresholds for prescribing certain drugs. This is a particular concern for antibiotics, given the increasing burden of antimicrobial resistance. Public preferences for consultations with online providers are unknown, hence the impact of increased availability of online consultations on antibiotic use and population health is unclear. OBJECTIVE: To conduct a discrete choice experiment survey to understand UK public preferences for seeking online consultations, and the factors that influence these preferences, in the context of having symptoms for which antibiotics may be appropriate. METHODS: In a survey conducted between July and August 2018, general population respondents completed 16 questions in which they chose a primary care consultation via either their local medical centre or an online provider. Consultations were described in terms of five attributes, including cost and similarity to traditional 'face-to-face' appointments. Choices were modelled using regression analysis. RESULTS: Respondents (n = 734) placed a high value on having a consultation via their local medical centre rather than an online provider, and a low value on consultations by phone or video. However, respondents characterised as 'busy young professionals' showed a lower strength of preference for traditional consultations, with a higher concern for convenience. CONCLUSION: Before COVID-19, the UK public had limited appetite for consultations with online providers, or for consultations that were not face-to-face. Nevertheless, prescriptions from online providers should be monitored going forward, particularly for antibiotics, and in key patient groups.

The role of pandemic-related pregnancy stress in preference for community birth during the beginning of the COVID-19 pandemic in the United States.

BACKGROUND: The COVID-19 pandemic introduced unparalleled uncertainty into the lives of pregnant women, including concerns about where it is the safest to give birth, while preserving their rights and wishes. Reports on the increased interest in community births (at home or in birth centers) are emerging. The purpose of this project was to quantitatively investigate psychological factors related to this birth preference. METHODS: This study included 3896 pregnant women from the COVID-19 Pregnancy Experiences (COPE) Study who were anticipating a vaginal birth. COPE Study participants were recruited online between April 24 and May 15, 2020, and completed a questionnaire that included preference with respect to place of birth and psychological constructs: fear of childbirth, basic beliefs about birth, pandemic-related preparedness stress, and pandemic-related perinatal infection stress. RESULTS: Women who preferred a community birth, on average, had less childbirth fear, had stronger beliefs that birth is a natural process, were less likely to see birth as a medical process, and were less stressed about being unprepared for birth and being infected with COVID-19. In multivariate models, higher stress about perinatal COVID-19 infection was associated with greater likelihood of preferring a community birth. The effect of perinatal infection stress on preference was stronger when preparedness stress was high. DISCUSSION: Women's birth preferences during the COVID-19 pandemic are associated with psychological processes related to risk perception. Community births are more appealing to women who view being in a hospital as hazardous because of the pandemic. Policies and prenatal care aimed to increase access to safe in-hospital and out-of-hospital birth services should be encouraged.

Preferences of people with mental illness for engaging in exercise programs under COVID-19 restrictions.

OBJECTIVES: People with mental illness may be vulnerable to decline in mental health and reduced physical activity because of the COVID-19 pandemic and associated restrictions. The aim of this study was to inform the design of physical activity interventions for implementation under these conditions to improve/maintain well-being and physical activity in this population. METHODS: People with mental illness who had participated in a physical activity program prior to the pandemic were invited to complete a survey about the impact of COVID-19 on mental health and physical activity and their preferences for engaging in a physical activity program under pandemic-related restrictions. RESULTS: More than half the 59 respondents reported worse mental health and lower physical activity during the pandemic. The preferred format for a physical activity program was one-on-one exercise instruction in-person in a park. Program components endorsed as helpful included incentivization, provision of exercise equipment and fitness devices, and daily exercise programs. About a third of the participants reported limitations in using technology for a physical activity program. CONCLUSIONS: In-person exercise support is preferred by people with mental illnesses during pandemic-related restrictions. Enablement strategies such as providing equipment and self-monitoring devices should be utilized; assistance may be needed to incorporate the use of technology in exercise programs.

Waitlisted Transplant Candidates' Attitudes and Concerns Toward Transplantation During COVID-19.

BACKGROUND In solid organ transplant (SOT) and hematopoietic stem cell transplant (HSCT) recipients, coronavirus disease 2019 (COVID-19) can contribute to a severe clinical course and an increased risk of death. Thus, patients awaiting a SOT or HSCT face the dilemma of choosing between a life-saving treatment that presents a significant threat of COVID-19 and the risk of waitlist dropout, progression of disease, or mortality. The lack of established literature on COVID-19 complicates the issue as patients, particularly those with inadequate health literacy, may not have the resources needed to navigate these decisions. MATERIAL AND METHODS We conducted a standardized phone survey of patients awaiting SOT or HSCT to assess the prevalence of inadequate health literacy and attitudes toward transplant during the COVID-19 pandemic. RESULTS Seventy-one patients completed the survey, with a response rate of 84.5%. Regardless of health literacy, most waitlisted candidates recognized that the current pandemic is a serious situation affecting their care and that COVID-19 poses a significant risk to their health. Despite the increased risks, most patients reported they would choose immediate transplantation if there was no foreseeable end to the pandemic, and especially if the medical urgency did not permit further delay. There were no differences in responses across the patient waitlist groups for heart, kidney, liver, and stem cell transplant. CONCLUSIONS These findings can help transplant centers decide how transplantation services should proceed during this pandemic and can be used to educate patients and guide discussions about informed consent for transplant during the COVID-19 pandemic.

Preferences for a COVID-19 vaccine in Australia.

In absence of a COVID-19 vaccine, testing, contact tracing and social restrictions are among the most powerful strategies adopted around the world to slow down the spread of the pandemic. Citizens of most countries are suffering major physical, psychological and economic distress. At this stage, a safe and effective COVID-19 vaccine is the most sustainable option to manage the current pandemic. However, vaccine hesitancy by even a small subset of the population can undermine the success of this strategy. The objective of this research is to investigate the vaccine characteristics that matter the most to Australian citizens and to explore the potential uptake of a COVID-19 vaccine in Australia. Through a stated preference experiment, preferences towards a COVID-19 vaccine of 2136 residents of the Australian states and territories were collected and analysed via a latent class model. Results show that preferences for mild adverse cases, mode of administration, location of administration, price and effectiveness are heterogeneous. Conversely, preferences for immediacy and severe reactions are homogeneous, with respondents preferring a shorter period until vaccine is available and lower instances of severe side effects. The expected uptake of the vaccine is estimated under three different scenarios, with the value of 86% obtained for an average scenario. By calculating individual preferences, the willingness to pay is estimated for immediacy, effectiveness, mild and severe side effects.

The Heart of Living and Dying: Upstreaming Advance Care Planning into Community Conversations in the Public Domain in Northern Ireland.

This paper provides an evaluation of the Heart of Living and Dying (HLD) Initiative. This initiative is a group process that attempts to bring Advance Care Planning (ACP) into the public domain. It encourages participants to consider what matters to them in their living along with their hopes, preferences, and wishes for their final years and end-of-life care. An inductive, interpretive, and naturalistic approach allowed the researcher to study these phenomena in their natural setting i.e., the community. This qualitative study used 5 focus groups with 17 people and employed thematic data analysis to identify key themes. All participants in the HLD speak from a personal perspective irrespective of any professional background. It transpired that 16 respondents worked in health and social care, which subsequently became noteworthy in the findings. Three key themes were identified: (a) feeling emotionally safe enough to have such sensitive conversations is vital; (b) participating in the HLD process increases the confidence of those participants who worked in health and social care, to undertake ACP conversations and (c) planning ahead is a complex, staged process rather than a single record-making event. The Covid-19 pandemic crisis reinforced the need to upstream ACP initiatives such as the HLD, as the norm for everyone, since all of us will one day die. It is recommended that the HLD be incorporated within ACP training given that the experiential nature of it and the use of groups was reported to build confidence in facilitating ACP conversations. A virtual HLD process needs to be developed to adapt to restrictions on gatherings due to Covid 19.

Definitions, survey methods, and findings of patient satisfaction studies in teledermatology: a systematic review.

Remote consultations likely will grow in importance if the COVID-19 pandemic continues. This review analyzes which methods of teledermatology patients prefer by categorizing how recent studies have defined satisfaction, conducted surveys and concluded patients respond to the different modalities of teledermatology. Using PubMed and Cochrane databases, we reviewed studies from April 5th, 2010 to April 5th, 2020 that included the search terms patient satisfaction and teledermatology. All studies that included patient satisfaction as an outcome were included, but studies not published in English were excluded. We examined domains of satisfaction, survey method, study characteristics (including patient population, country, age, study design and evidence score), findings and statistical comparisons. We thoroughly reviewed 23 studies. Definitions of satisfaction varied, but all concluded patients were satisfied with the live-interactive and store-and-forward modalities. The studies reveal that store-and-forward is appropriate for clinicians with established patients who require regular follow-up. Verified areas of care include treatment of chronic conditions, topical skin cancer therapy, wound monitoring, and post-procedural follow-up. Only four studies conducted statistical analyses. One of those studies compared patient preference for each modality of teledermatology with face-to-face dermatology. While this study reported high satisfaction with each mode of teledermatology, patients still preferred face-to-face. Favorable responses to remote diagnostic capabilities suggest that these offerings improve preference for teledermatology. With only one study evaluating preference between each modality and face-to-face dermatology, more studies should address the discrepancy. Surveys that cover all domains of satisfaction may improve assessments and identify where gaps in preference exist.

Perspective of Oncology Patients During COVID-19 Pandemic: A Prospective Observational Study From India.

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has imposed a unique challenge to oncology patients and their treatment. There is no study related to the patients' preference for systemic therapy during this pandemic. We have conducted a prospective study to analyze that aspect. METHODS: All consecutive patients who visited during the lockdown period from April 1-10, 2020, for systemic chemotherapy were included in the study for a questionnaire-based survey to evaluate the willingness to continue chemotherapy during this pandemic and factors influencing the decisions. RESULTS: A total of 302 patients were included (median age, 56 years; range, 21-77 years). Most common sites of cancer were breast (n = 114), lung (n = 44), ovary (n = 34), and colon (n = 20). Home address was within the city for 125 patients (42%), outside the city for 138 (46%), and outside the state for 37 (12%). Treatment was curative in 150 patients and palliative in 152. Educational status was primary and above for 231 patients and no formal schooling for 71. A total of 203 patients wanted to continue chemotherapy, 40 wanted to defer, and 56 wanted the physician to decide. Knowledge about COVID-19 strongly correlated with intent of treatment (P = .01), disease status (P = .02), knowledge about immunosuppression (P < .001), home location (P = .02), and education status (P = .003). The worry about catching SARS-CoV-2 was high in those with controlled disease (P = .06) and knowledge about immunosuppression (P = .02). Worry about disease progression was more with palliative intent (P < .001). CONCLUSION: This study shows that oncology patients in our country are more worried about disease progression than the SARS-CoV-2 and wish to continue chemotherapy during this pandemic. The treatment guidelines in the COVID-19 scenario should incorporate patients' perspectives.

Psychological distress, coping behaviors, and preferences for support among New York healthcare workers during the COVID-19 pandemic.

OBJECTIVE: The mental health toll of COVID-19 on healthcare workers (HCW) is not yet fully described. We characterized distress, coping, and preferences for support among NYC HCWs during the COVID-19 pandemic. METHODS: This was a cross-sectional web survey of physicians, advanced practice providers, residents/fellows, and nurses, conducted during a peak of inpatient admissions for COVID-19 in NYC (April 9th-April 24th 2020) at a large medical center in NYC (n = 657). RESULTS: Positive screens for psychological symptoms were common; 57% for acute stress, 48% for depressive, and 33% for anxiety symptoms. For each, a higher percent of nurses/advanced practice providers screened positive vs. attending physicians, though housestaff's rates for acute stress and depression did not differ from either. Sixty-one percent of participants reported increased sense of meaning/purpose since the COVID-19 outbreak. Physical activity/exercise was the most common coping behavior (59%), and access to an individual therapist with online self-guided counseling (33%) garnered the most interest. CONCLUSIONS: NYC HCWs, especially nurses and advanced practice providers, are experiencing COVID-19-related psychological distress. Participants reported using empirically-supported coping behaviors, and endorsed indicators of resilience, but they also reported interest in additional wellness resources. Programs developed to mitigate stress among HCWs during the COVID-19 pandemic should integrate HCW preferences.