scholarly journals Telehealth-Based Services During the COVID-19 Pandemic: A Systematic Review of Features and Challenges

2021 ◽  
Vol 9 ◽  
Author(s):  
Farnaz Khoshrounejad ◽  
Mahsa Hamednia ◽  
Ameneh Mehrjerd ◽  
Shima Pichaghsaz ◽  
Hossein Jamalirad ◽  
...  
Keyword(s):  
Technology Acceptance ◽  
Mixed Reality ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
The United States ◽  
Text Messages ◽  
Synchronous Communication ◽  
Function Type ◽  
Phone Calls

Background: As an ever-growing popular service, telehealth catered for better access to high-quality healthcare services. It is more valuable and cost-effective, particularly in the middle of the current COVID-19 pandemic. Accordingly, this study aimed to systematically review the features and challenges of telehealth-based services developed to support COVID-19 patients and healthcare providers.Methods: A comprehensive search was done for the English language and peer-reviewed articles published until November 2020 using PubMed and Scopus electronic databases. In this review paper, only studies focusing on the telehealth-based service to support COVID-19 patients and healthcare providers were included. The first author's name, publication year, country of the research, study objectives, outcomes, function type including screening, triage, prevention, diagnosis, treatment or follow-up, target population, media, communication type, guideline-based design, main findings, and challenges were extracted, classified, and tabulated.Results: Of the 5,005 studies identified initially, 64 met the eligibility criteria. The studies came from 18 countries. Most of them were conducted in the United States and China. Phone calls, mobile applications, videoconferencing or video calls, emails, websites, text messages, mixed-reality, and teleradiology software were used as the media for communication. The majority of studies used a synchronous communication. The articles addressed the prevention, screening, triage, diagnosis, treatment, and follow-up aspects of COVID-19 which the most common purpose was the patients' follow-up (34/64, 53%). Thirteen group barriers were identified in the literature, which technology acceptance and user adoption, concerns about the adequacy and accuracy of subjective patient assessment, and technical issues were the most frequent ones.Conclusion: This review revealed the usefulness of telehealth-based services during the COVID-19 outbreak and beyond. The features and challenges identified through the literature can be helpful for a better understanding of current telehealth approaches and pointed out the need for clear guidelines, scientific evidence, and innovative policies to implement successful telehealth projects.

Transitioning a randomized controlled trial to a digital registry – experience from the TAILOR-PCI digital follow-up study on onboarding, engagement and geofencing consent rate

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
R Avram ◽  
D So ◽  
E Iturriaga ◽  
J Byrne ◽  
R.J Lennon ◽  
...  
Keyword(s):  
Clinical Trial ◽  
The United States ◽  
Mobile App ◽  
Funding Source ◽  
Location Tracking ◽  
Main Trial ◽  
Phone Calls ◽  
Effective Manner ◽  
Research Platform

Abstract Background/Introduction TAILOR-PCI is the largest cardiovascular genotype-based randomized trial (NCT#01742117) investigating whether genotype-guided selection of oral P2Y12 inhibitor therapy improves ischemic outcomes after percutaneous coronary intervention (PCI). The TAILOR-PCI Digital Sub-Study tests the feasibility of extending original follow-up of 1 year to 2 years using state-of-the-art digital solutions. Deep phenotyping acquired during a clinical trial can be leveraged by extending follow-up in an efficient and cost-effective manner using digital technology. Purpose Our objective is to describe onboarding and engagement of participants initially recruited in a large, pragmatic, international, multi-center clinical trial to a digital registry. Methods TAILOR-PCI participants, within 23 months of their index PCI, were invited by letters containing a URL to the Digital Sub-Study website (http://tailorpci.eurekaplatform.org). These invitations were followed by phone calls, if no response to the letter, to determine reason for non-participation. A NIH-funded direct-to-participant digital research platform (the Eureka Research Platform) was used to onboard, consent and enroll participants for the digital follow-up. Participants were asked to answer health-related surveys at fixed intervals using the Eureka mobile app and desktop platform. To capture hospitalizations, participants could enable geofencing to allow background location tracking, which triggered surveys if a hospitalization was detected. Result(s) Letters were mailed to 893 of 929 eligible participants across 22 sites in the United States and Canada leading to 226 homepage visits and 118 registrations. There were 107 consents (12.0% of invited; mean age: 66.4±9.0; 19 females [18%]): 47 (44%) participants consented after the letter, 36 (34%) consented after the 1st call and 24 (22%) consented after a 2nd call. Among those who consented, 100 were eligible (7 did not have a smartphone) 81 downloaded the study mobile app and 73 agreed for geofencing (Figure 1). Among the 722 invited participants who were surveyed, 354 declined participation: due to lack of time (146; 20.2%), lack of smartphone (125; 17.3%), difficulty understanding (41; 5.7%), concern about using smartphone (34; 4.7%), concern of data privacy (14; 1.9%), concerns of location tracking (6; 0.8%) and other reasons (57; 7.9%). Conclusion Extended follow-up of a clinical trial using a digital platform is feasible but uptake in this study population was limited largely due to lack of time or a smartphone among participants. Based on data from other digital studies, uptake may also have been limited since digital follow-up consent was not incorporated at the time of consent for the main trial. Figure 1. Onboarding of the digital substudy Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): National Institute of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI)

scholarly journals A Systematic Review of the Use of Telemedicine in the Military Forces Worldwide

2020 ◽  
Vol 21 (11) ◽  
Author(s):  
Reza Mohammadi ◽  
Zeinab Tabanejad ◽  
Shahabeddin Abhari ◽  
Behnam Honarvar ◽  
Mina Lazem ◽  
...  
Keyword(s):  
Systematic Review ◽  
Data Extraction ◽  
Healthcare Providers ◽  
Military Medicine ◽  
Healthcare Services ◽  
Developed Countries ◽  
The United States ◽  
Positive Effects ◽  
Military Forces ◽  
The Military

Context: Considering the pivotal role of telemedicine in providing healthcare services for remote areas, some of the military medical centers, especially in developed countries, use different types of telemedicine programs. Objectives: The present study aimed at identifying the implemented telemedicine projects in military medicine worldwide and introducing their features. Evidence Acquisition: The current systematic review was performed in 2018. PubMed, Scopus, Embase, and Web of Science databases were searched for articles published from 2014 to 2018 by a combination of related keywords, and the related original articles were then selected based on the inclusion and exclusion criteria. Data were collected by a data extraction form, and then the data were summarized and reported based on the study objectives. Results: Of the 173 articles retrieved from the first round of search, 12 were included in the study; five (41.66%) studies had used the synchronous (real-time telemedicine) method. The United States, with nine studies, had the highest number of projects in military telemedicine. Most studies (n = 7) were performed on tele-psychology and the application of telemedicine in psychology. All selected studies reported the positive effects of telemedicine on providing healthcare for military forces. Conclusions: The proper utilization of telemedicine equipment is effective in saving time for both patients and healthcare providers, reducing costs, supporting in natural disasters, and satisfying patients with military medicine. To achieve telemedicine program objectives, they should be set precisely. Considering the importance of timely healthcare services, it is suggested to utilize synchronous methods and tools such as video conferencing.

Implementing Digital Technology to Transitioning a Clinical Trial to a Registry – TAILOR-PCI Digital Study: Methods/Study Design (Preprint)

2021 ◽  
Author(s):  
Robert Avram ◽  
Derek So ◽  
Erin Iturriaga ◽  
Julia Byrne ◽  
Ryan Lennon ◽  
...  
Keyword(s):  
Clinical Trial ◽  
The United States ◽  
Completion Rate ◽  
Phone Call ◽  
Consent Rate ◽  
Digital Platform ◽  
Phone Calls ◽  
Patient Reported ◽  
Research Platform

BACKGROUND TAILOR-PCI was the largest cardiovascular genotype-based randomized clinical trial (RCT) investigating whether CYP2C19 genotype-guided selection of oral P2Y12 inhibitor therapy improved ischemic outcomes after percutaneous coronary intervention (PCI). The TAILOR-PCI Digital Registry was a novel proof-of-concept study that evaluated the feasibility of extending the main RCT follow-up period using a remote digital platform. OBJECTIVE To describe patients onboarding, engagement and results of a digital registry after enrollment in a RCT. METHODS In this intervention study, previously enrolled TAILOR-PCI patients in the United States and Canada within 24 months of randomization were invited by letters containing a URL to the TAILOR-PCI Digital Registry website (http://tailorpci.eurekaplatform.org), instructing them to download the study app. Patients previously enrolled in the TAILOR-PCI study, with a smartphone, were eligible to join the Digital Registry. Those who did not respond to the letter were contacted by phone to survey reasons for non-participation and were invited again to join the study. A direct-to-patient digital research platform (the Eureka Research Platform) was used to onboard, consent and enrol patients in the Digital Registry. Patients were asked to complete health-related surveys and provide follow-up data digitally. Consent rate to the Digital Registry, duration of participation in the Digital Registry and monthly activity completion rate. The hypothesis being tested was formulated before data collection began. RESULTS After the parent trial was completed, letters were mailed to 907 eligible patients (representing 19% of total enrolled in the RCT) across 24 sites, who were within 15.6 ± 5.2 months after randomization leading to 290 unique individuals visits to the Digital Registry website. Among those invited, 110 patients (12%) consented: 45 (41%) after the letter, 37 (34%) after the 1st phone call and 28 (25%) after a 2nd call. Of the 862 who didn’t consent after the letter, 453 patients (53%) did not respond to repeated phone calls and among the 409 patients who responded, 171 (41%) declined participation stating lack of time, 128 (31%), due to lack of smartphone and 47 (11%) due to difficulty understanding what was expected of them in the study. Patients who consented were older, had less diabetes or tobacco use; a greater proportion had bachelor's degrees or higher and were more computer literate than those who did not consent. The average completion rate of the 920 available monthly electronic visits was 64.9±7.6% without a decrease in this rate throughout the study duration. There were no differences between randomization arms in any patient reported outcomes using the digital platform. CONCLUSIONS Extended follow-up after enrollment in a RCT using a digital registry is technically feasible but was limited due to inability to contact most eligible patients, lack of time or access to a smartphone. Among those enrolled, most patients completed required electronic visits. Enhanced recruitment methods, such as introduction of the digital study at the time of RCT consent, provision of smartphone and robust study support for onboarding, should be explored further. CLINICALTRIAL TAILOR-PCI (Clinicaltrials.gov: NCT01742117)

scholarly journals Patient experiences using a novel tool to improve care transitions in patients with heart failure: a qualitative analysis

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e026822 ◽  
Author(s):  
Toni Schofield ◽  
R Sacha Bhatia ◽  
Cindy Yin ◽  
Shoshana Hahn-Goldberg ◽  
Karen Okrainec
Keyword(s):  
Heart Failure ◽  
Care Transitions ◽  
Healthcare Providers ◽  
Discharge Summary ◽  
Lifestyle Changes ◽  
Discharge Instructions ◽  
Written Information ◽  
Phone Calls

ObjectiveTo evaluate the utility of a novel discharge tool adapted for heart failure (HF) on patient experience.DesignSemistructured interviews assessed the utility of a novel discharge tool adapted for HF; patient-oriented discharge summary (PODS-HF) at 72 hours and 30 days after leaving hospital. Interviews were recorded and transcribed verbatim. Three investigators used directed content analysis to determine themes and subthemes from the narrative data.SettingThe cardiology ward of an urban academic institution in Canada.Participants13 patients and caregivers completed 24 interviews. Eligible patients were >18 years and admitted with a diagnosis of HF.ResultsAnalysis revealed six interconnected themes: (1) Utility of discharge instructions: how patients perceive and use written and verbal instructions. Patients receiving PODS-HF identified value in the patient-centred summarised content. (2) Adherence: strategies used by patients to enhance adherence to medications, diet and lifestyle changes. PODS-HF provides a strong visual reminder, particularly early postdischarge. (3) Adaptation: how patients incorporate changes into ‘new norms’. This was more evident by 30 days, and those using PODS-HF had less unscheduled visits and readmissions. (4) Relationships with healthcare providers: patients’ perceptions of the roles of family physicians and specialists in follow-up care. (5) Role of family and caregivers: the pivotal role of caregivers in supporting adherence and adaptation. (6) Follow-up phone calls: the utility of follow-up calls, particularly early after discharge as a means of providing clarification, reassurance and education.ConclusionPODS-HF is a useful tool that increases patients’ confidence to self-manage and facilitates adherence by providing relevant written information to reference after discharge.

scholarly journals Using graphic text-messaging to promote smoking cessation among first-generation Chinese and Korean male immigrants

2019 ◽  
Vol 34 (3) ◽  
pp. 332-344
Author(s):  
Xiaoquan Zhao ◽  
Emily B Peterson ◽  
Kyeung Mi Oh ◽  
Xiaomei Cai
Keyword(s):  
Smoking Cessation ◽  
Text Messaging ◽  
First Generation ◽  
The United States ◽  
Text Messages ◽  
Washington Dc ◽  
Promote Smoking Cessation ◽  
Text Messaging Intervention ◽  
Expired Air

Abstract First-generation Chinese and Korean male immigrants in the United States are at high risk for tobacco use. This study pilot-tested a graphic, native-language text-messaging intervention to promote smoking cessation among these groups. First-generation Chinese and Korean male immigrant smokers (N = 71) were recruited from the Washington DC area. Participants were randomly assigned to one of four conditions based on a between-subjects 2 (graphic plus text or text-only messages) � 2 (quitline information or quitting tips) design. The text-messaging intervention included 30 text messages in total and lasted one month. Participants completed an expired air carbon monoxide (CO) assessment and self-reported measures at both baseline and follow-up. Results show that, from baseline to follow-up, participants’ expired air CO levels decreased significantly (P = 0.001). Attitude toward quitting also became more positive (P = 0.028). Compared with text-only messages, graphic text messages produced greater positive changes in quitting attitudes (P = 0.039) and elicited greater fear response (P = 0.005). Compared with quitting tip messages, quitline information resulted in greater regret (P = 0.016) and fear (P = 0.051). These findings suggest that graphic text-messaging can be an effective method to promote smoking cessation among first-generation Chinese and Korean male immigrants.

scholarly journals Integrative Review of the Interventions for Improving Patients’ Experiences Revealed in Quality Improvement Projects

2020 ◽  
Vol 7 (6) ◽  
pp. 882-892
Author(s):  
Jin Jun ◽  
Kailyn Stern ◽  
Maja Djukic
Keyword(s):  
Hospital Care ◽  
Discharge Planning ◽  
Healthcare Providers ◽  
Level Of Evidence ◽  
Phone Calls ◽  
Hospital Consumer Assessment ◽  
Critical Appraisal Skills ◽  
Consumer Assessment

Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) is the first national, standardized, publicly reported survey of patients’ perspectives of hospital care closely linked to hospitals’ reimbursement and reputation. Thus, it is critical to learn about what interventions work for improving HCAHPS. Eight peer-reviewed studies examining nursing-led interventions at improving patient satisfaction in hospitals, measured by the HCAHPS, were identified. Using the Critical Appraisal Skills Program for cohort studies, each study was evaluated for a level of evidence. Interventions that increased HCAHPS were (1) nursing rounds, (2) the use of discharge nurses, (3) follow-up phone calls by nurses, and (4) continuing education for nurses. However, the quality of evidence is low and based on single-site, pre–postdesign studies. Hospital leaders should focus their efforts on a combination of nurse rounding, comprehensive discharge planning to improve patients’ overall experience with hospital care, and their likelihood to recommend the hospital.

scholarly journals AB1187 TREATMENT ADHERENCE: WHAT ABOUT THE RHEUMATOLOGIST?

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1884.2-1884
Author(s):  
R. Pineda-Sic ◽  
M. M. Castañeda-Martínez ◽  
I. D. J. Hernandez-Galarza ◽  
E. I. Guevara Elizondo ◽  
D. E. Flores Alvarado ◽  
...  
Keyword(s):  
Patient Education ◽  
Treatment Adherence ◽  
Rheumatic Diseases ◽  
Text Messages ◽  
Antirheumatic Drug ◽  
Adherence To Medication ◽  
Phone Calls ◽  
Disease Modifying ◽  
Disease Modifying Antirheumatic Drug

Background:Adherence to medications among patients with rheumatic diseases is often suboptimal.1Adherence to treatment has been described to be affected by several factors.2The rheumatologist plays a crucial role in influencing adherence behavior by addressing perceptions about medication, providing information, and establishing trust in the treatment plan.3There is no record of attitudes and thoughts of Mexico’s rheumatologists about adherence to medication.Objectives:To know the rheumatologist’s attitudes regarding treatment adherence in follow up consultation.Methods:Descriptive, cross sectional study. Rheumatologists from across the country were invited to respond an electronic survey created with Google Forms, link was sent by Whatsapp ® message, responses were anonymous. The survey was constructed taking into account the main barriers of adherence related to the doctor. Seven questions were created, from one to six were multiple selections and the seven were open question1.Where do you practice medicine? 2.Do you ask all your patients about adherence medication? 3.If your answer was positive, do you ask individually for each drug? 4.How long do you spend on explaining: side effects, benefits, and mechanisms of action of drugs? 5 Do you discuss available treatment options with your patients to decide one? 6.What’s the definition of adherence? 7.Which activities can the doctor do to improve adherence to their patients?Results:Data were collected from 158 rheumatologists who completed the survey. Regarding the question where they practice medicine, 19.5% answered they work in public medical institutions, 31.8% do private practice and 48.7% work in both of them, 88.3% answered correctly adherence definition, 93% of rheumatologists ask for adherence to medication in the follow up consultation and only 86.1% do it individually for each medication, 97.4% discuss therapeutic options with their patients. The time used to explain treatment is presented in Figure 1. The interventions considered by rheumatologists to increase adherence are reported in Table 1.Table 1Interventions considered by rheumatologists to increase adherencePatient education(in follow up consultation, conferences, pamphlets)Develop rapportwith patient. (“be accessible”, “answer questions” “make the patient part of“ don’t be paternalistic or authoritarian”)Adherence measure(Use the available method, questionnaires, self-report, drug levels, electronic pillbox, pill count, etc. “Don’t matter which one, measure it!“)Interventions for no adherence reasons(phone calls, text messages, telephone alarms) fixed schedules for each medication, cognitive-behavioral therapy, access to medications)Family support networkPresented in order to frequencies and grouped by topicConclusion:Rheumatologists ask for adherence medication but more than half use a limited amount of time to explain about medication, nevertheless, they think that patient education is the best intervention to increase adherence.References:[1]Pasma, Annelieke et.al Facilitators and Barriers to Adherence in the Initiation Phase of Disease modifying Antirheumatic Drug (DMARD) Use in Patients with Arthritis Who Recently Started Their First DMARD Treatment, The Journal of Rheumatology (2013) DOI:10.3899/jrheum.140693.[2]M.F. M. Improving treatment adherence in patients with rheumatoid arthritis: What are the options? Int J Clin Rheumtol. 2015;10(5):345–56.[3]Voshaar et al. Barriers and facilitators to disease modifying antirheumatic drug use in patients with inflammatory rheumatic diseases: a qualitative theory-based study. BMC Musculoskeletal Disorders (2016) 17:442 DOI 10.1186/s12891-016-1289-zDisclosure of Interests:None declared

Title: Remote monitoring program for patients with COVID-19 after hospital discharge: Exploring user's experience and perspectives on two telehealth platforms. (Preprint)

2021 ◽  
Author(s):  
Marie-Pascale Pomey ◽  
Khayreddine Bouabida ◽  
Bertrand Lebouché ◽  
Kathy Malas ◽  
Annie Talbot ◽  
...  
Keyword(s):  
Content Analysis ◽  
Remote Monitoring ◽  
Healthcare Providers ◽  
Monitoring Program ◽  
Healthcare Services ◽  
Descriptive Statistics ◽  
Research Approach ◽  
Quality And Safety ◽  
Cross Sectional ◽  
Phone Calls

BACKGROUND As Covid-19 pandemic circumstances created the need to act to reduce the spread of the virus and alleviate healthcare services from congestions, protect healthcare providers and support them in maintaining a satisfactory quality and safety of care, Covid19 patient remote monitoring platforms quickly emerged. OBJECTIVE This study aimed to evaluate the capacity and contribution of two different platforms' services to monitor remotely patients with Covid-19. The first is a platform of telecare calls (Telecare-Covid), and the second platform is a telemonitoring app (Tactio-Covid). The study sought to examine the differences in acceptability, usefulness, and conviviality of those two different platforms services from users' perspectives and evaluate their contribution in maintaining the quality and safety of care, and engaging patients in their care. METHODS We performed a retrospective cross-sectional study using a survey. The data were collected through phone calls between May and August 2020. The data were analyzed using descriptive statistics, and t-test analysis. The participants' responses and comments on open-ended questions were analyzed using content analysis. The research approach through descriptive statistics allowed us to examine the differences in acceptability, usefulness, and conviviality of those two different platforms services from users' perspectives and determine their contributions to maintaining the quality and safety of care and promoting patient engagement. Whereas the content analysis of the general comments enabled the identification of certain stakes and challenges and improvements paths of the platforms. RESULTS In total, 51 patients participated in the study. 18 participants have used the Tactio-Covid platform and 33 participants have used the Telecare-Covid platform. Overall, the satisfaction rate regarding the quality and safety of the care services provided through the two platforms was 80%. Over 88% of users on each platform considered the services offered by the two platforms as engaging, useful, convivial, and meet their needs. The survey identified very few significant differences in users' perceptions regarding certain aspects on each platform. The survey identified four well-appreciated domains by the platforms’ users: (1) the ease of access and the proximity of care teams, and (2) the conviviality of the platform features (3) the continuity of care, and (4) the multitude of services. Certain stakes and limits such as the importance of maintaining human contact and confidentiality have been also identified and suggestions for improvement have been formulated. CONCLUSIONS This study provided preliminary evidence suggesting that the two remote monitoring platforms were well-received by users by users with very few significant differences between users' experience and perspectives over the two platforms. This type of program can be considered in a post-pandemic era and for other post-hospitalization clienteles. To maximize efficiency, the areas for improvement and the issues identified should be considered in a patient-centered manner. CLINICALTRIAL NA

Financing and Insurance

2018 ◽  
Author(s):  
Samuel H Zuvekas ◽  
Earle Buddy Lingle ◽  
Ardis Hanson ◽  
Bruce Lubotsky Levin
Keyword(s):  
Public Health ◽  
United States ◽  
Health Insurance ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Insurance Coverage ◽  
Healthcare Services ◽  
Safety Net ◽  
The United States ◽  
Public And Private

The complexity of US healthcare systems is staggering. In 2015, Americans spent approximately $3.7 trillion on healthcare, averaging almost $10,000 per person. Further, Americans rely on a mixture of public and private health insurance coverage to pay for the bulk of the healthcare services they receive. To provide a better understanding of the financing of healthcare in the United States, this chapter examines major government healthcare programs and funding. It begins with a look at the US public health insurance system and the healthcare “safety net,” comprised of a patchwork of public, private, and philanthropic providers and programs. The next sections look at how US insurers and families pay doctors, hospitals, nursing homes, and other healthcare providers to deliver services in the United States and how pharmacy services are financed in public health.

scholarly journals Needs management in families affected by childhood-onset dystrophinopathies

2019 ◽  
Vol 7 ◽  
pp. 205031211983447 ◽  
Author(s):  
Kristin M Conway ◽  
Katy Eichinger ◽  
Christina Trout ◽  
Paul A Romitti ◽  
Katherine D Mathews ◽  
...  
Keyword(s):  
Psychosocial Support ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
The United States ◽  
Research Network ◽  
Childhood Onset ◽  
Psychosocial Services ◽  
Health Practitioners ◽  
The Many ◽  
Public Health Practitioners

Purpose: To collect information about the needs of families affected by childhood-onset dystrophinopathies residing in the United States. Methods: Individuals with an eligible dystrophinopathy were identified by the Muscular Dystrophy Surveillance, Tracking, and Research network. Between September 2008 and December 2012, 272 caregivers completed a 48-item survey about needs related to information, healthcare services, psychosocial issues, finances, caregiver demographics, and the individual’s functioning. Results: Overall, at least 80% of the survey items were identified as needs for more than one-half of caregivers. Among the needs identified, physical health and access to information were currently managed for most caregivers. Items identified as needed but managed less consistently were funding for needs not covered by insurance and psychosocial support. Conclusions: Healthcare providers, public health practitioners, and policymakers should be aware of the many needs reported by caregivers, and focus on addressing gaps in provision of needed financial and psychosocial services.

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