Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19.
Ontology highlight
ABSTRACT:
SUBMITTER: Houben-Wilke S
PROVIDER: S-EPMC8205416 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
Publications
Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19.
Houben-Wilke Sarah S Delbressine Jeannet M JM Vaes Anouk W AW Goërtz Yvonne Mj YM Meys Roy R Machado Felipe Vc FV Van Herck Maarten M Burtin Chris C Posthuma Rein R Franssen Frits Me FM van Loon Nicole Hp NH Hajian Bita B Vijlbrief Herman H Spies Yvonne Y van 't Hul Alex A Janssen Daisy Ja DJ Spruit Martijn A MA
Journal of patient experience 20210308
To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Faceboo ...[more]
Similar Datasets
Project description:BackgroundArtificial intelligence (AI) is as a branch of computer science that uses advanced computational methods such as machine learning (ML), to calculate and/or predict health outcomes and address patient and provider health needs. While these technologies show great promise for improving healthcare, especially in diabetes management, there are usability and safety concerns for both patients and providers about the use of AI/ML in healthcare management.ObjectivesTo support and ensure safe use of AI/ML technologies in healthcare, the team worked to better understand: 1) patient information and training needs, 2) the factors that influence patients' perceived value and trust in AI/ML healthcare applications; and 3) on how best to support safe and appropriate use of AI/ML enabled devices and applications among people living with diabetes.MethodsTo understand general patient perspectives and information needs related to the use of AI/ML in healthcare, we conducted a series of focus groups (n=9) and interviews (n=3) with patients (n=40) and interviews with providers (n=6) in Alaska, Idaho, and Virginia. Grounded Theory guided data gathering, synthesis, and analysis. Thematic content and constant comparison analysis were used to identify relevant themes and sub-themes. Inductive approaches were used to link data to key concepts including preferred patient-provider-interactions, patient perceptions of trust, accuracy, value, assurances, and information transparency.ResultsKey summary themes and recommendations focused on: 1) patient preferences for AI/ML enabled device and/or application information; 2) patient and provider AI/ML-related device and/or application training needs; 3) factors contributing to patient and provider trust in AI/ML enabled devices and/or application; and 4) AI/ML-related device and/or application functionality and safety considerations. A number of participant (patients and providers) recommendations to improve device functionality to guide information and labeling mandates (e.g., links to online video resources, and access to 24/7 live in-person or virtual emergency support). Other patient recommendations include: 1) access to practice devices; 2) connection to local supports and reputable community resources; 3) simplified display and alert limits.ConclusionRecommendations from both patients and providers could be used by Federal Oversight Agencies to improve utilization of AI/ML monitoring of technology use in diabetes, improving device safety and efficacy.
| S-EPMC10851077 | biostudies-literature
Project description:The Coronavirus Disease-2019 (COVID-19) pandemic has brought catastrophic impact on the world since the beginning of December 2019. Extra precautionary measures against COVID-19 during and after delivery are pivotal to ensure the safety of the baby and health care workers. Based on current literature, it is recommended that delivery decisions be discussed between obstetricians and neonatologists prior to delivery, and designated negative pressure delivery rooms should be arranged for COVID person under investigation (PUI). During delivery, a minimal number of experienced staff attending delivery should don personal protective equipment (PPE) and follow the neonatal resuscitation program (NRP). Positive pressure ventilation is best used in a negative pressure room if available. At-risk babies should be transported in an isolette, and tested for COVID-19 in a negative pressure room soon after bathing. Skin-to-skin contact and breast milk feed should continue under certain circumstances. Although newborns with COVID-19 infections often present with symptoms that mimic sepsis and one third of affected patients may demand some form of respiratory support, short-term prognoses are favorable and most recover within two weeks of symptoms onset. In this article, we will further elaborate on topics covering timing and mode of delivery, antenatal steroid, vertical transmission, delivery room management, airway management, transport, testing and isolation after birth, skin-to-skin contact, breast milk feeding, clinical features, outcomes, and discharge plans. In addition, we also share our experiences of encountering neonates born of suspected COVID-19 positive mothers.
| S-EPMC8231697 | biostudies-literature
Project description:Patients who have survived malignant melanoma for more than five years may lack the opportunity to talk about their burden. As a consequence their psychosocial care needs remain undetected and available supportive interventions may not be utilised. Therefore, the psychosocial burden of this patient group needs to be assessed using specific screening instruments. The aim of this study was to investigate the psychosocial burden of long-term melanoma survivors, their psychosocial care needs and the determinants of these needs. We wanted to find out if the use of professional support corresponds to the care needs defined by experts. Using the cancer registry of Rhineland-Palatinate, melanoma patients diagnosed at least 5 years before the survey were contacted by physicians. N = 689 former patients completed the Hornheide Questionnaire (short form HQ-S) to identify psychosocial support need (scale cut off ≥ 16 or item-based cut-off score) and the potential psychosocial determinants of these needs. Additionally, they were asked about their utilisation of the professional support system. More than one third (36%) of them was in need for professional psychosocial support. The highest burden scores concerned worry about tumour progression. Younger age (< 50), higher general fatigue, higher symptom burden, lower general health, negative social interactions and unfulfilled information needs were significant predictors of the need for psychosocial intervention. Related to the percentage of survivors identified as 'in need', the professional support system was underused. Further studies should investigate whether using the HQ-S to routinely identify burdened melanoma patients could lead to better fulfilment of their intervention needs, ultimately enhancing health-related quality of life.
| S-EPMC4546620 | biostudies-other
Project description:Objective. The COVID-19 pandemic created an unprecedented strain on the health care system, and administrators had to make many critical decisions to respond appropriately. This study sought to understand how health care administrators used data and information for decision making during the first 6 mo of the COVID-19 pandemic. Materials and Methods. We conducted semistructured interviews with administrators across University of Florida (UF) Health. We performed an inductive thematic analysis of the transcripts. Results. Four themes emerged from the interviews: 1) common types of health systems or hospital operations data; 2) public health and other external data sources; 3) data interaction, integration, and exchange; and 4) novelty and evolution in data, information, or tools used over time. Participants illustrated the organizational, public health, and regional information they considered essential (e.g., hospital census, community positivity rate, etc.). Participants named specific challenges they faced due to data quality and timeliness. Participants elaborated on the necessity of data integration, validation, and coordination across different boundaries (e.g., different hospital systems in the same metro areas, public health agencies at the local, state, and federal level, etc.). Participants indicated that even within the first 6 mo of the COVID-19 pandemic, the data and tools used for making critical decisions changed. Discussion. While existing medical informatics infrastructure can facilitate decision making in pandemic response, data may not always be readily available in a usable format. Interoperable infrastructure and data standardization across multiple health systems would help provide more reliable and timely information for decision making. Conclusion. Our findings contribute to future discussions of improving data infrastructure and developing harmonized data standards needed to facilitate critical decisions at multiple health care system levels.HighlightsThe study revealed common health systems or hospital operations data and information used in decision making during the first 6 mo of the COVID-19 pandemic.Participants described commonly used internal data sources, such as resource and financial reports and dashboards, and external data sources, such as federal, state, and local public health data.Participants described challenges including poor timeliness and limited local relevance of external data as well as poor integration of data sources within and across organizational boundaries.Results suggest the need for continued integration and standardization of health data to support health care administrative decision making during pandemics or other emergencies.
| S-EPMC8972941 | biostudies-literature
Project description:BackgroundSystemic allergic reactions to vaccines are very rare. In this study we assessed the management and outcome of suspected SARS-CoV-2 vaccine hypersensitivity.MethodsTotally, 334 individuals underwent an allergy work up regarding SARS-CoV-2 vaccination (group A: 115 individuals suspected to be at increased risk for vaccine-related reactions before vaccination and group B: 219 patients with reactions after COVID vaccination). The large majority of the SPT/IDT with the vaccines were negative; however, we identified in 14.1% (n = 47) a possible sensitization to the SARS-CoV-2 vaccine and/or its ingredients defined as one positive skin test. Of the 219 individuals (group B) who experienced symptoms suspicious for a hypersensitivity reaction after vaccination, 214 were reported after the first vaccination with a mRNA vaccine (157 mRNA (Comirnaty®, 38 Spikevax®) and 18 with a vector vaccine (Vaxzevria®), 5 cases were after the second vaccination.ResultsThe symptom profile in group B was as follows: skin symptoms occurred in 115 cases (n = 59 angioedema, n = 50 generalized urticaria and n = 23 erythema/flush. Seventy individuals had cardiovascular, 53 respiratory and 17 gastrointestinal symptoms. Of the overall 334 individuals, 78 patients tolerated (re)-vaccination (out of skin test positive/negative 7/19 from group A and 17/35 from group B).ConclusionProven IgE-mediated hypersensitivity to SARS-CoV-2 vaccines is extremely rare and not increased in comparison with reported hypersensitivity to other vaccines. The value of skin tests is unclear and nonspecific reactions, in particular when intradermal testing is applied, should be considered.
| S-EPMC9350006 | biostudies-literature
Project description:ObjectivesCardiovascular conditions were shown to be predictive of clinical deterioration in hospitalised patients with coronavirus disease 2019 (COVID-19). Whether this also holds for outpatients managed in primary care is yet unknown. The aim of this study was to determine the incremental value of cardiovascular vulnerability in predicting the risk of hospital referral in primary care COVID-19 outpatients.DesignAnalysis of anonymised routine care data extracted from electronic medical records from three large Dutch primary care registries.SettingPrimary care.ParticipantsConsecutive adult patients seen in primary care for COVID-19 symptoms in the 'first wave' of COVID-19 infections (March 1 2020 to June 1 2020) and in the 'second wave' (June 1 2020 to April 15 2021) in the Netherlands.Outcome measuresA multivariable logistic regression model was fitted to predict hospital referral within 90 days after first COVID-19 consultation in primary care. Data from the 'first wave' was used for derivation (n = 5,475 patients). Age, sex, the interaction between age and sex, and the number of cardiovascular conditions and/or diabetes (0, 1, or ≥2) were pre-specified as candidate predictors. This full model was (i) compared to a simple model including only age and sex and its interaction, and (ii) externally validated in COVID-19 patients during the 'second wave' (n = 16,693).ResultsThe full model performed better than the simple model (likelihood ratio test p<0.001). Older male patients with multiple cardiovascular conditions and/or diabetes had the highest predicted risk of hospital referral, reaching risks above 15-20%, whereas on average this risk was 5.1%. The temporally validated c-statistic was 0.747 (95%CI 0.729-0.764) and the model showed good calibration upon validation.ConclusionsFor patients with COVID-19 symptoms managed in primary care, the risk of hospital referral was on average 5.1%. Older, male and cardiovascular vulnerable COVID-19 patients are more at risk for hospital referral.
| S-EPMC9000124 | biostudies-literature
Project description:BackgroundDisabled older adults' needs for help with daily activities sometimes go unmet with potentially long-term negative consequences for health and well-being.ObjectivesTo examine the relationship between care recipient unmet needs and (1) concerns about being a burden; (2) perceptions of caregiver burden; and (3) and caregiver self-reports of burden in community-dwelling care recipient-caregiver dyads.Research design and methodsTelephone surveys with 196 linked caregiver-care recipient dyads from the 2017 Pittsburgh Regional Caregiver Survey. Of 376 caregivers who gave initial permission to contact the recipient (February-July), 262 caregivers were recontacted and gave permission to attempt a care recipient survey (September-October; n = 196 completed; 74.8% response rate). In addition to the burden measures, we controlled for several covariates, including disability level, receipt of paid help, and care recipient and caregiver sociodemographics.ResultsSlightly more than one fourth (27.2%) of care recipients were "very concerned" about being a burden, and 43.6% were "somewhat concerned." Care recipient concerns about being a burden (exp(B) = 1.71, 95% confidence interval [CI] exp(B) [1.15, 2.54]); and caregiver self-reported burden (exp(B) = 1.82, 95% CI exp(B) [1.17, 2.85]) were independent predictors of more care recipient unmet needs. Recipient perceptions of caregiver burden were not independently predictive. Care recipients with higher disability levels, those without paid help, and those whose caregiver was not a spouse/child also reported more unmet needs. The impact of burden on unmet needs was stronger for instrumental activities of daily living/mobility needs than for activities of daily living needs.Discussion and implicationsPotential interventions to reduce unmet needs should take a dyadic approach, focusing on reducing both care recipient perceptions of being a burden and caregiver experienced burden.
| S-EPMC6186011 | biostudies-literature
Project description:BackgroundPosttraumatic Stress Disorder (PTSD) is a commonly occurring mental illness. There are multiple treatments for PTSD that have similar effectiveness, but these treatments differ substantially in other ways. It is desirable to have well-informed patients involved in treatment choices. A patient decision aid (PtDA) is one method to achieve this goal. This manuscript describes the rationale and development of a patient decision aid (PtDA) designed for patients with PTSD.MethodsWe conducted an informational needs assessment of veterans (n = 19) to obtain their baseline information needs prior to the development of the PtDA. We also conducted a literature review of effective PTSD treatments, and we calculated respective effective sizes. A PtDA prototype was developed according to the guidelines from the International Patient Decision Aid Standards. These standards guided our development of both content and format for the PtDA. In accordance with the standards, we gathered feedback from patients (n = 20) and providers (n = 7) to further refine the PtDA. The information obtained from patients and the literature review was used to develop a decision aid for patients with PTSD.ResultsPatients with PTSD reported a strong preference to receive information about treatment options. They expressed interest in also learning about PTSD symptoms. The patients preferred information presented in a booklet format. From our literature review several treatments emerged as effective for PTSD: Cognitive Therapy, Exposure Therapy, Eye Movement Desensitization Therapy, Selective Serotonin Reuptake Inhibitors, venlafaxine, and risperidone.ConclusionIt appears that the criteria set forth to develop decision aids can effectively be applied to PTSD. The resultant PTSD patient decision aid is a booklet that describes the causes, symptoms, and treatments for PTSD. Future work will examine the effects of use of the PTSD decision aid in clinical practice.Trial registrationClinicaltrials.gov identifier NCT00908440. Registered May 20, 2009.
| S-EPMC4736082 | biostudies-literature
Project description:The encounter with the rampant novel Corona virus infection has led the healthcare system across the world to update and modify its tools to fight this pandemic. Pregnancy, childbirth and breast feeding are a set of special situations to be dealt in women afflicted with Covid-19. Currently there is no universal consensus on managing the issue of breast feeding with rooming-in of the neonates in women with suspected or confirmed Covid-19. Literature is still evolving with contradictory guidelines from various authorities across the globe. This review intends to analyse the available evidence on managing breast feeding in such women and to derive a practically plausible approach in handling such situations.
| S-EPMC7340186 | biostudies-literature
Project description:BackgroundA SARS-CoV-2 infection can lead from asymptomatic through to critical disease in a dynamic and unpredictable course within a few days. The challenge in outpatient monitoring the highly contagious COVID-19 disease during the ongoing pandemic is to filter severe courses followed by admission to hospital with the aim of preventing an overburdening of clinics. However, little is known of the effect of risk factors on the course of the infection of outpatient patients. To support general practices in managing high risk patients, we designed a COVID-19 surveillance and care tool (CovidCare). It includes an initial assessment of yet known risk factors and symptoms and a continuous telephone monitoring of signs and symptoms. This study aims to investigate the effects of different risk factors on the course of the COVID-19 disease, utilisation of different health care services and to gain insights into the utilisation of CovidCare in general practices.MethodsWe will conduct a multi-centered prospective, longitudinal non-controlled observational trial of COVID-19 patients in general practices. Overall, 700 GPs who participate in general-practice centered care by the AOK Baden-Württemberg (large German sickness fund) are eligible and will be invited for study participation, including adult, outpatient COVID-19 patients (or urgent suspicion and ≥ 50 years) with at least one additional known risk factor, who participate in general-practice centered care. The primary outcome is hospitalisation due to COVID-19. Secondary outcomes are diagnosis of pneumonia, utilisation of palliative care, mortality rate, anxiety and identification of predictive risk factors. Quantitative data analysis will focus on valid descriptive figures and mixed regression models. The accompanying process evaluation is based on interviews and questionnaires from general practice staff and patients. The analysis of the process evaluation is descriptive and explorative.DiscussionThe use of the COVID-19 surveillance and care tool is expected to encourage the provision of structured quality of care during the ongoing pandemic. This trial will provide an understanding of the COVID-19-disease and the effect of several risk factors on the course of the disease and health care utilisation. The results can be used for a better management of the COVID-19 pandemic and its consequences.Trial registrationGerman Clinical Trials Register DRKS00022054 .
| S-EPMC8412868 | biostudies-literature