scholarly journals Satisfaction and perceptions of research participants in clinical and translational studies: An urban multi-institution with CTSA

2020 ◽  
Vol 4 (4) ◽  
pp. 317-322
Author(s):  
Priscilla Adler ◽  
Jane Otado ◽  
John Kwagyan
Keyword(s):  
Clinical Trials ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Quality Care ◽  
Delivery Of Care ◽  
Participant Satisfaction ◽  
Research Participants ◽  
Care Access ◽  
Degree Of Satisfaction ◽  
Research Volunteers

AbstractPurpose:To examine research participants’ levels of satisfaction and perceptions and aid researchers to better engage research volunteers from all racial and ethnic populations in clinical trials. A participant satisfaction survey was developed that focused on three domains to reflect satisfaction with delivery of care, environment, and center operations. In addition, the survey contained open-ended questions to reflect overall experiences and perceptions. Two hundred and seventy-eight participants (55% African American and 29% non-Hispanic Whites) with an average age of 52 years completed the survey.Results:The results indicated that the majority of the participants rated their satisfaction very highly across all domains. Ninety percent stated they were very satisfied/satisfied or very strongly agreed/agreed in the three domains. Obtaining high-quality care/access to health care professionals (60%), learning more about their illness/disease (60%), and helping others (57%) were noted as important factors in choosing to participate in a trial. Regarding overall experience, majority of respondents stated that friendliness, expertise of staff, learning more about their disease, and contributing to science were important. Further, financial compensation was not a primary motivation for participation. A majority of participants stated that they would participate in future studies and would recommend a friend or a family member to participate in clinical trials.Conclusions:The findings indicate that the degree of satisfaction with the research staff and with the specific trial itself are important determinants for enrolling, completing a study, and for participating in future trials.

scholarly journals Forum: equity in access to health care. Introduction

2008 ◽  
Vol 24 (5) ◽  
pp. 1159-1161 ◽  
Author(s):  
Claudia Travassos
Keyword(s):  
Health Care ◽  
Health Care Access ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Health Care Systems ◽  
Care Access ◽  
Unethical Practices ◽  
Access To Health ◽  
Care Systems ◽  
Equity In Access

The Introduction outlines this issue's special Forum on equity in access to health care, including three Articles and a Postscript. The Forum represents a continuation of the debates raised during a seminar organized by the Oswaldo Cruz Foundation in the city of Rio de Janeiro, Brazil, in 2006, in collaboration with UNICEF, UNDP, World Bank, the WHO Special Program for Research and Training in Tropical Diseases, and the United Nations Research Institute for Social Development. The authors approach health care access and equity from a comprehensive and contemporaneous perspective, introducing a new conceptual framework for access, in which information plays a central role. Trust is proposed as an important value for an equitable health care system. Unethical practices by health administrators and health care professionals are highlighted as hidden critical aspects of inequities in health care. As a whole, the articles represent a renewed contribution for understating inequalities in access, and for building socially just health care systems.

Quality Cancer Care for Adolescents and Young Adults: A Position Statement

2010 ◽  
Vol 28 (32) ◽  
pp. 4862-4867 ◽  
Author(s):  
Brad Zebrack ◽  
Beth Mathews-Bradshaw ◽  
Stuart Siegel
Keyword(s):  
Young Adult ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Quality Care ◽  
Position Statement ◽  
Adolescent And Young Adult ◽  
Standards Of Care ◽  
Psychosocial Needs ◽  
Patients With Cancer ◽  
Care Guidelines

Purpose This consensus-based position statement on behalf of the LIVESTRONG Young Adult Alliance (Alliance) offers recommendations to enhance oncologic care of adolescent and young adult (AYA) patients with cancer. Background In 2005 to 2006, the National Cancer Institute and the Lance Armstrong Foundation jointly sponsored the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG report included the directive to develop standards of care for AYA patients with cancer and to disseminate these guidelines to the community. To this end, the Alliance convened a meeting of experts (clinicians, researchers, and advocates) in June 2009 and derived this position statement. Results Quality care for AYAs depends on four critical elements: timely detection; efficient processes for diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals who possess knowledge specific to the biomedical and psychosocial needs of this population; and research that will ultimately derive objective criteria for the development of AYA oncology care guidelines. Achieving quality care for AYAs will require assistance with management of disease and treatment effects; cognizance of the unique psychosocial context for AYA growth and development; assessment of and attention to cognitive, psychiatric, and psychosocial issues; facilitated transition to treatment care; and referral to age-appropriate information and support services. Conclusion Dissemination of recommendations stated here will raise awareness of the need for AYA-specific care guidelines and assist providers in the delivery of care that is responsive to the distinct needs of AYAs with cancer.

scholarly journals The Effect of EU Integration on Health Care in Central and Eastern Europe

2020 ◽  
Author(s):  
Tomislav Sokol
Keyword(s):  
Health Care ◽  
Health Care Access ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Health Indicators ◽  
Legal Framework ◽  
Member States ◽  
Care Access ◽  
General Improvement ◽  
The Eu

Abstract The effect of EU policy and its legal framework on health care in CEE member states has been complex. In relation to health care access and financial sustainability, it has been detrimental in certain parts of CEE. This has primarily been to the result of economic/fiscal governance instruments of the EU and free-movement rules facilitating outflows of health care professionals Although there has been a general improvement in access to health care since accession to the EU, the instruments the EU has used to handle the economic crisis have somewhat offset this improvement. Additionally, outflow of health care professionals has resulted in retention strategies such as salary increases and investments in medical infrastructure in some CEE member states, increasing the standard of health care. Still, differences between East and West in terms of important health indicators continue to exist, and EU instruments aimed at compensating this generally lack power to provide meaningful solutions. It seems more solidarity between member states is the only way to increase legitimacy of the European integration in CEE member states and thus prevent them from feeling as outsiders within the EU. Without such a development, CEE countries will continue to lag behind other parts of the Union.

Clinical trials screening: An opportunity to increase medical care access

2001 ◽  
Vol 120 (5) ◽  
pp. A410-A410
Author(s):  
T KOVASC ◽  
R ALTMAN ◽  
R JUTABHA ◽  
G OHNING
Keyword(s):  
Clinical Trials ◽  
Medical Care ◽  
Care Access

scholarly journals Implementation of Person-Centered Care: A Feasibility Study Using the WE-CARE Roadmap

2021 ◽  
Vol 18 (5) ◽  
pp. 2205
Author(s):  
Roman A. Lewandowski ◽  
Jędrzej B. Lewandowski ◽  
Inger Ekman ◽  
Karl Swedberg ◽  
Jan Törnell ◽  
...  
Keyword(s):  
Pilot Study ◽  
Feasibility Study ◽  
Health Care Professionals ◽  
Quality Care ◽  
Structured Interviews ◽  
Rehabilitation Hospital ◽  
Person Centered Care ◽  
Centered Care ◽  
Multi Disciplinary Team

Background: Person-Centered Care (PCC) is a promising approach towards improved quality of care and cost containment within health systems. It has been evaluated in Sweden and England. This feasibility study examines initial PCC implementation in a rehabilitation hospital for children in Poland. Methods: The WE-CARE Roadmap of enablers was used to guide implementation of PCC for patients with moderate scoliosis. A multi-disciplinary team of professionals were trained in the PCC approach and the hospital Information Technology (IT) system was modified to enhance PCC data capture. Semi-structured interviews were conducted with the nine health care professionals involved in the pilot study and three patients/parents receiving care. Transcribed data were analyzed via content analysis. Results: 51 patients and their families were treated via a PCC approach. High proportions of new PCC data fields were completed by the professionals. The professionals were able to implement the three core PCC routines and perceived benefits using the PCC approach. Patients and their families also perceived improved quality care. The WE-CARE framework enablers facilitated PCC implementation in this setting. Conclusions: This feasibility pilot study indicates that the Gothenburg PCC approach can be successfully transferred to a rehabilitation hospital in Poland with favorable perceptions of implementation by both professionals and patients/their families.

scholarly journals A Roadmap to Inform Development, Validation and Approval of Digital Mobility Outcomes: The Mobilise-D Approach

2020 ◽  
Vol 4 (1) ◽  
pp. 13-27 ◽  
Author(s):  
Lynn Rochester ◽  
Claudia Mazzà ◽  
Arne Mueller ◽  
Brian Caulfield ◽  
Marie McCarthy ◽  
...  
Keyword(s):  
Health Care ◽  
Clinical Trials ◽  
Health Care Professionals ◽  
Digital Health ◽  
Disease Status ◽  
Proximal Femoral Fracture ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Physical Mobility ◽  
High Level

Health care has had to adapt rapidly to COVID-19, and this in turn has highlighted a pressing need for tools to facilitate remote visits and monitoring. Digital health technology, including body-worn devices, offers a solution using digital outcomes to measure and monitor disease status and provide outcomes meaningful to both patients and health care professionals. Remote monitoring of physical mobility is a prime example, because mobility is among the most advanced modalities that can be assessed digitally and remotely. Loss of mobility is also an important feature of many health conditions, providing a read-out of health as well as a target for intervention. Real-world, continuous digital measures of mobility (digital mobility outcomes or DMOs) provide an opportunity for novel insights into health care conditions complementing existing mobility measures. Accepted and approved DMOs are not yet widely available. The need for large collaborative efforts to tackle the critical steps to adoption is widely recognised. Mobilise-D is an example. It is a multidisciplinary consortium of 34 institutions from academia and industry funded through the European Innovative Medicines Initiative 2 Joint Undertaking. Members of Mobilise-D are collaborating to address the critical steps for DMOs to be adopted in clinical trials and ultimately health care. To achieve this, the consortium has developed a roadmap to inform the development, validation and approval of DMOs in Parkinson’s disease, multiple sclerosis, chronic obstructive pulmonary disease and recovery from proximal femoral fracture. Here we aim to describe the proposed approach and provide a high-level view of the ongoing and planned work of the Mobilise-D consortium. Ultimately, Mobilise-D aims to stimulate widespread adoption of DMOs through the provision of device agnostic software, standards and robust validation in order to bring digital outcomes from concept to use in clinical trials and health care.

scholarly journals 482. Impact of COVID-19 Pandemic on Psychosocial and Clinical Factors among people with and without HIV living in Miami

2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S308-S308
Author(s):  
Patricia RaccamarichClaudia S Uribe ◽  
Ana S Salazar Zetina ◽  
Emily K Montgomerie ◽  
Douglas Salguero ◽  
Alejandro M Mantero ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Access ◽  
Access To Health Care ◽  
People Living With Hiv ◽  
Coping With Stress ◽  
Care Access ◽  
Significant Difference ◽  
Physical Consequences ◽  
The Impact ◽  
Hiv Negative

Abstract Background As the COronaVIrus Disease 2019 (COVID-19) continues to unfold, drastic changes in daily life pose significant challenges on mental and clinical health. While public health interventions such as national lockdowns and social distancing are enforced to reduce the spread of COVID-19, the psychosocial and physical consequences have yet to be determined that may disproportionately affect people living with HIV (PLWH). Methods To evaluate the impact of COVID-related stress on mental and clinical health, we conducted a 20-minute questionnaire eliciting sociodemographic information, clinical and psychological factors from people living in Miami, Fl. All individuals >18 years with or without a history of COVID-19 were included. Participating PLWH were recruited from an existing HIV registry and HIV uninfected participants from community flyers and word of mouth. Results A total of 135 participants were recruited from 05/2020-06/2020. The mean age was 50 years old, 73/135 (54%) were female, and 102/135 (75%) were PLWH. Among participating PLWH, 60/102 (58.8%) self-identified as African American, and 9/102 (8.8%) were positive for COVID-19 by a commercially approved test. Among HIV-negative participants, 15/33 (45.5%) self-identified as White and 11/33 (33%) were positive for COVID-19. Both PLWH and HIV-negative participants described significant disruptions in health care access (47%), difficulty paying basic needs (41%), and feelings of anxiety and depression (48%); there was no statistically significant difference by HIV status. However, HIV negative participants were less likely to experience job loss and income disruption compared to PLWH during the pandemic (70% for HIV-negative vs 48% for PLWH; OR 0.40, p=0.03). Conclusion The impact of COVID-19 on emotional and clinical health is significant in both PLWH and HIV-negative groups. These findings highlight the need for providing mental and physical health care during the pandemic, especially for coping with stress and anxiety during these difficult times and ensuring adequate access to health care. Disclosures All Authors: No reported disclosures

Impact of restricting access to health care services on Syrian refugees in Jordan: evidence from cross-sectional surveys

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Ibraheem Khaled Abu Siam ◽  
María Rubio Gómez
Keyword(s):  
Health Care ◽  
Health Care Access ◽  
Access To Health Care ◽  
Health Care Services ◽  
Health Care Cost ◽  
Syrian Refugees ◽  
Cross Sectional ◽  
Content Type ◽  
Care Access ◽  
Care Services

Purpose Access to health-care services for refugees are always impacted by many factors and strongly associated with population profile, nature of crisis and capacities of hosing countries. Throughout refugee’s crisis, the Jordanian Government has adopted several healthcare access policies to meet the health needs of Syrian refugees while maintaining the stability of the health-care system. The adopted health-care provision policies ranged from enabling to restricting and from affordable to unaffordable. The purpose of this paper is to identify the influence of restricted level of access to essential health services among Syrian refugees in Jordan. Design/methodology/approach This paper used findings of a cross-sectional surveys conducted over urban Syrian refugees in Jordan in 2017 and 2018 over two different health-care access policies. The first were inclusive and affordable, whereas the other considered very restricting policy owing to high inflation in health-care cost. Access indicators from four main thematic areas were selected including maternal health, family planning, child health and monthly access of household. A comparison between both years’ access indicators was conducted to understand access barriers and its impact. Findings The comparison between findings of both surveys shows a sudden shift in health-care access and utilization behaviors with increased barriers level thus increased health vulnerabilities. Additionally, the finding during implementation of restricted access policy proves the tendency among some refugees groups to adopt negative adaptation strategies to reduce health-care cost. The participants shifted to use a fragmented health-care, reduced or delayed care seeking and use drugs irrationally weather by self-medication or reduce drug intake. Originality/value Understanding access barriers to health services and its negative short-term and long-term impact on refugees’ health status as well as the extended risks to the host communities will help states that hosting refugees building rational access policy to protect whole community and save public health gains during and post crisis. Additionally, it will support donors to better mobilize resources according to the needs while the humanitarian actors and service providers will better contribute to the public health stability during refugee’s crisis.

ActionHealthNYC: Effectiveness of a Health Care Access Program for the Uninsured, 2016‒2017

2021 ◽  
pp. e1-e10
Author(s):  
Rishi K. Sood ◽  
Jin Yung Bae ◽  
Adrienne Sabety ◽  
Pui Ying Chan ◽  
Caroline Heindrichs
Keyword(s):  
Public Health ◽  
Health Care ◽  
New York ◽  
Health Care Access ◽  
Access To Health Care ◽  
Controlled Trial ◽  
The Past ◽  
Care Access ◽  
State And Local ◽  
Access Program

Objectives. To evaluate the effectiveness of a novel health care access program (ActionHealthNYC) for uninsured immigrants. Methods. The evaluation was conducted as a randomized controlled trial in New York City from May 2016 through June 2017. Using baseline and follow-up survey data, we assessed health care access, patient experience, and health status. Results.At baseline, 25% of participants had a regular source of care; two thirds had visited a doctor in the past year and reported 2.5 visits in the past 12 months, on average. Nine to 12 months later, intervention participants were 1.2 times more likely to report having a primary care provider (58% vs 46%), were 1.2 times more likely to have seen a doctor in the past 9 months (91% vs 77%), and had 1.5 times more health care visits (4.1 vs 2.9) compared with control participants. Conclusions. ActionHealthNYC increased health care access among program participants. Public Health Implications. State and local policymakers should build on the progress that has been made over the last decade to expand and improve access to health care for uninsured immigrants. (Am J Public Health. Published online ahead of print June 10, 2021: e1–e10. https://doi.org/10.2105/AJPH.2021.306271 )

Sign in / Sign up

Export Citation Format

Share Document