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3.
Syst Rev ; 10(1): 289, 2021 11 01.
Article in English | MEDLINE | ID: covidwho-1496222

ABSTRACT

BACKGROUND: The coronavirus disease 19 (covid-19) pandemic has underscored the need to expedite clinical research, which may lead investigators to shift away from measuring patient-important outcomes (PIO), limiting research applicability. We aim to investigate if randomized controlled trials (RCTs) of covid-19 pharmacological therapies include PIOs. METHODS: We will perform a meta-epidemiological study of RCTs that included people at risk for, or with suspected, probable, or confirmed covid-19, examining any pharmacological treatment or blood product aimed at prophylaxis or treatment. We will obtain data from all RCTs identified in a living network metanalysis (NMA). The main data sources are the living WHO covid-19 database up to 1 March 2021 and six additional Chinese databases up to 20 February 2021. Two reviewers independently will review each citation, full-text article, and abstract data. To categorize the outcomes according to their importance to patients, we will adapt a previously defined hierarchy: a) mortality, b) quality of life/ functional status/symptoms, c) morbidity, and d) surrogate outcomes. Outcomes within the category a) and b) will be considered critically important to patients, and outcomes within the category c) will be regarded as important. We will use descriptive statistics to assess the proportion of studies that report each category of outcomes. We will perform univariable and multivariable analysis to explore associations between trial characteristics and the likelihood of reporting PIOs. DISCUSSION: The findings from this meta-epidemiological study will help health care professionals and researchers understand if the current covid-19 trials are effectively assessing and reporting the outcomes that are important to patients. If a deficiency in capturing PIOs is identified, this information may help inform the development of future RCTs in covid-19. SYSTEMATIC REVIEW REGISTRATIONS: Open Science Framework registration: osf.io/6xgjz .


Subject(s)
COVID-19 , Epidemiologic Studies , Humans , Patient Reported Outcome Measures , Randomized Controlled Trials as Topic , SARS-CoV-2 , Systematic Reviews as Topic
4.
Liver Transpl ; 27(10): 1479-1489, 2021 10.
Article in English | MEDLINE | ID: covidwho-1487507

ABSTRACT

Cirrhosis has a significant and growing impact on public health and patient-reported outcomes (PROs). The increasing burden of cirrhosis has led to an emphasis on the quality of care with the goal of improving overall outcomes in this high-risk population. Existing evidence has shown the significant gaps in quality across process measures (eg, hepatocellular carcinoma screening), highlighting the need for consistent measurement and interventions to address the gaps in quality care. This multistep process forms the quality continuum, and it depends on clearly defined process measures, real-time quality measurement, and generalizable evaluative methods. Herein we review the current state of quality care in cirrhosis across the continuum with a focus on process measurement methodologies, developments in PRO evaluation on quality assessment, practical examples of quality improvement initiatives, and the recent emphasis placed on the value of primary prevention.


Subject(s)
Liver Transplantation , Quality Improvement , Humans , Liver Cirrhosis/diagnosis , Liver Cirrhosis/therapy , Patient Reported Outcome Measures , Quality of Health Care
5.
Syst Rev ; 10(1): 237, 2021 08 28.
Article in English | MEDLINE | ID: covidwho-1456007

ABSTRACT

BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. METHODS: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. DISCUSSION: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. SYSTEMATIC REVIEW REGISTRATION: https://osf.io/yfch2/ .


Subject(s)
Health Personnel , Palliative Care , Adolescent , Child , Humans , Patient Reported Outcome Measures , Review Literature as Topic , Systematic Reviews as Topic
6.
BMJ Open ; 11(3): e044888, 2021 03 15.
Article in English | MEDLINE | ID: covidwho-1455712

ABSTRACT

INTRODUCTION: Type 2 diabetes is a global health priority. People with diabetes are more likely to experience mental health problems relative to people without diabetes. Diabetes guidelines recommend assessment of depression and diabetes distress during diabetes care. This systematic review will examine the effect of routinely assessing and addressing depression and diabetes distress using patient-reported outcome measures in improving outcomes among adults with type 2 diabetes. METHODS AND ANALYSIS: MEDLINE, Embase, CINAHL Complete, PsycInfo, The Cochrane Library and Cochrane Central Register of Controlled Trials will be searched using a prespecified strategy using a prespecified Population, Intervention, Comparator, Outcomes, Setting and study design strategy. The date range of the search of all databases will be from inception to 3 August 2020. Randomised controlled trials, interrupted time-series studies, prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies published in peer-reviewed journals in the English language will be included. Two review authors will independently screen abstracts and full texts with disagreements resolved by a third reviewer, if required, using Covidence software. Two reviewers will undertake risk of bias assessment using checklists appropriate to study design. Data will be extracted using prespecified template. A narrative synthesis will be conducted, with a meta-analysis, if appropriate. ETHICS AND DISSEMINATION: Ethics approval is not required for this review of published studies. Presentation of results will follow the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidance. Findings will be disseminated via peer-reviewed publication and conference presentations. PROSPERO REGISTRATION NUMBER: CRD42020200246.


Subject(s)
Diabetes Mellitus, Type 2 , Adult , Cross-Sectional Studies , Depression/diagnosis , Diabetes Mellitus, Type 2/complications , Diabetes Mellitus, Type 2/therapy , Humans , Meta-Analysis as Topic , Patient Reported Outcome Measures , Prospective Studies , Research Design , Retrospective Studies , Systematic Reviews as Topic
7.
Microsurgery ; 41(5): 488-497, 2021 Jul.
Article in English | MEDLINE | ID: covidwho-1453627

ABSTRACT

PURPOSE: Adults with traumatic digital amputation (TDA) of the hand may be managed with replantation or revision amputation. To date, there is no systematic review evaluating patient reported outcomes (PROs) comparing replantation versus revision amputation. METHODS: Three databases (MEDLINE, EMBASE, and PubMed) were systematically searched in duplicate from inception until June 13, 2019 using Covidence software. Studies comparing replantation versus revision amputation outcomes were considered for inclusion. Methodological quality was assessed using Methodologic Index for Nonrandomized Studies (MINORS) criteria. Data were pooled in a random-effects meta-analysis model using Revman software. Certainty of evidence was evaluated using Grading of Recommendations, Assessment, Development, and Evaluations (GRADE). RESULTS: Of 4350 studies identified, 12 retrospective cohort studies met inclusion criteria and compared TDA outcomes for replantation (n = 717; 82.9% male; mean age 40.3) versus revision amputation (n = 1046; 79.8% male; mean age 41.7). The overall replantation survival rate was 85.3%. The average MINORS score was 57% (13.75/24). Replantation of the thumb had a superior Michigan Hand Questionnaire (MHQ) score (+11.88, 95% CI [7.78-15.99], I2 = 21%) compared with revision amputation. Replantation of single non-thumb digits had a superior MHQ score (+5.31, 95% CI [3.10-7.51], I2 = 67%) and Disability of Arm, Shoulder, and Hand (DASH) score (-5.16, 95% CI [-8.27 to -2.06], I2 = 0%) compared with revision amputation. Most patients in the meta-analysis were from Asian populations (87.9%). CONCLUSION: There is low-quality evidence that thumb replantation achieves superior PROs compared with revision amputation, which may be clinically important. Replantation of single non-thumb digits also yielded superior PROs, which is likely not clinically important and based on very low-quality evidence. Future studies with populations outside Asia are required to determine if PROs vary based on cultural differences toward digital amputation.


Subject(s)
Amputation, Traumatic , Finger Injuries , Adult , Amputation , Amputation, Traumatic/surgery , Female , Finger Injuries/surgery , Humans , Male , Patient Reported Outcome Measures , Replantation , Retrospective Studies
8.
Int J Environ Res Public Health ; 17(9)2020 04 26.
Article in English | MEDLINE | ID: covidwho-1456322

ABSTRACT

Poor sleep quality is a common concern and a troublesome symptom among patients suffering from fibromyalgia. The purpose of this review was to identify and describe the available patient reported outcome measures (PROMs) of sleep quality validated in adult people diagnosed with fibromyalgia. The COSMIN and PRISMA recommendations were followed. An electronic systematized search in the electronic databases PubMed, Scopus, CINAHL Plus, PsycINFO, and ISI Web of Science was carried out. Validation studies of PROMs of sleep quality in fibromyalgia published in English or Spanish were included. The selection of the studies was developed through a peer review process through the online software "COVIDENCE". The quality of the studies was assessed using the COSMIN Risk of Bias checklist. A total of 5 PROMs were found validated in patients with fibromyalgia: (1) Pittsburgh Sleep Quality Index (PSQI), (2) Jenkins Sleep Scale (JSS), (3) Sleep Quality Numeric Rating Scale (SQ-NRS), (4) Medical Outcomes Study-Sleep Scale (MOS-SS), and (5) Fibromyalgia Sleep Diary (FSD). The quality of the evidence was very good and the quality of the results ranged from moderate to high. All the included PROMs, except for the FSD, showed adequate psychometric properties and, therefore, are valid and reliable tools for assessing sleep quality in the context of FM. However, none of the studies analyzed all the psychometric properties of the included PROMs as established in the COSMIN guidelines, highlighting that this is a potential field of research for future investigations.


Subject(s)
Depressive Disorder, Major , Fibromyalgia , Patient Reported Outcome Measures , Sleep Wake Disorders , Adult , Female , Fibromyalgia/complications , Fibromyalgia/therapy , Humans , Male , Psychometrics , Quality of Life , Reproducibility of Results , Sleep , Sleep Wake Disorders/etiology , Sleep Wake Disorders/therapy , Surveys and Questionnaires
9.
Trials ; 22(1): 666, 2021 Sep 28.
Article in English | MEDLINE | ID: covidwho-1443797

ABSTRACT

BACKGROUND: Despite the progress of research and treatment for breast cancer, still up to 30% of the patients afflicted will develop distant disease. Elongation of survival and maintaining the quality of life (QoL) become pivotal issues guiding the treatment decisions. One possible approach to optimise survival and QoL is the use of patient-reported outcomes (PROs) to timely identify acute disease-related burden. We present the protocol of a trial that investigates the effect of real-time PRO data captured with electronic mobile devices on QoL in female breast cancer patients with metastatic disease. METHODS: This study is a randomised, controlled trial with 1:1 randomisation between two arms. A total of 1000 patients will be recruited in 40 selected breast cancer centres. Patients in the intervention arm receive a weekly request via an app to complete the PRO survey. Symptoms will be assessed by study-specific optimised short forms based on the EORTC QLQ-C30 domains using items from the EORTC CAT item banks. In case of deteriorating PRO scores, an alarm is sent to the treating study centre as well as to the PRO B study office. Following the alarm, the treating breast cancer centre is required to contact the patient to inquire about the reported symptoms and to intervene, if necessary. The intervention is not specified and depends on the clinical need determined by the treating physician. Patients in the control arm are prompted by the app every 3 months to participate in the PRO survey, but their response will not trigger an alarm. The primary outcome is the fatigue level 6 months after enrolment. Secondary endpoints include among others hospitalisations, use of rescue services and overall QoL. DISCUSSION: Within the PRO B intervention group, we expect lower fatigue levels 6 months after intervention start, higher levels of QoL, less unplanned hospitalisations and less emergency room visits compared to controls. In case of positive results, our approach would allow a fast and easy transfer into clinical practice due to the use of the already nationwide existing IT infrastructure of the German Cancer Society and the independent certification institute OnkoZert. TRIAL REGISTRATION: DRKS (German Clinical Trials Register) DRKS00024015 . Registered on 15 February 2021.


Subject(s)
Breast Neoplasms , COVID-19 , Acute Disease , Breast Neoplasms/therapy , Female , Humans , Patient Reported Outcome Measures , Quality of Life , Randomized Controlled Trials as Topic , SARS-CoV-2
10.
Crit Care Med ; 49(9): 1427-1438, 2021 09 01.
Article in English | MEDLINE | ID: covidwho-1434524

ABSTRACT

OBJECTIVE: Determine the characteristics of postintensive care syndrome in the cognitive, physical, and psychiatric domains in coronavirus disease 2019 ICU survivors. DESIGN: Single-center descriptive cohort study from April 21, to July 7, 2020. SETTING: Critical care recovery clinic at The Mount Sinai Hospital in New York City. PATIENTS: Adults who had critical illness due to coronavirus disease 2019 requiring an ICU stay of 7 days or more and who agreed to a telehealth follow-up in the critical care recovery clinic 1-month post hospital discharge. INTERVENTIONS: None. MEASURES AND MAIN RESULTS: Patient-reported outcome measures assessing physical and psychiatric domains were collected electronically, a cognitive test was performed by a clinician, and clinical data were obtained through electronic medical records. Outcome measures assessed postintensive care syndrome symptoms in the physical (Modified Rankin Scale, Dalhousie Clinical Frailty Scale, Neuro-Quality of Life Upper Extremity and Lower Extremity Function, Neuro-Quality of Life Fatigue), psychiatric (Insomnia Severity Scale; Patient Health Questionnaire-9; and Posttraumatic Stress Disorder Checklist for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), and cognitive (Telephone Montreal Cognitive Assessment) domains. The 3-Level Version of Euro-QoL-5D was used to assess the physical and psychiatric domains. A diagnosis of postintensive care syndrome was made in cases with evidence of impairment in at least one postintensive care syndrome domain. We included 45 patients with a mean (sd) age of 54 (13) years, and 73% were male. Ninety-one percent of coronavirus disease 2019 ICU survivors fit diagnostic criteria for postintensive care syndrome. 86.7 % had impairments in the physical domain, 22 (48%) reported impairments in the psychiatric domain, and four (8%) had impairments on cognitive screening. We found that 58% had some degree of mobility impairment. In the psychiatric domain, 38% exhibited at least mild depression, and 18 % moderate to severe depression. Eighteen percent presented Posttraumatic Stress Disorder Checklist for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, scores suggestive of posttraumatic stress syndrome diagnosis. In the Telephone Montreal Cognitive Assessment, 9% had impaired cognition. CONCLUSIONS: Survivors of critical illness related to coronavirus disease 2019 are at high risk of developing postintensive care syndrome. These findings highlight the importance of planning for appropriate post-ICU care to diagnose and treat this population.


Subject(s)
COVID-19/complications , Critical Illness , COVID-19/psychology , COVID-19/therapy , Cognitive Dysfunction/epidemiology , Cognitive Dysfunction/etiology , Cohort Studies , Critical Care , Female , Humans , Intensive Care Units , Male , Middle Aged , New York City , Patient Reported Outcome Measures , Stress Disorders, Post-Traumatic/epidemiology , Stress Disorders, Post-Traumatic/etiology , Survivors/psychology
12.
Rheumatol Int ; 41(11): 1925-1931, 2021 Nov.
Article in English | MEDLINE | ID: covidwho-1391850

ABSTRACT

Vaccines against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) were launched in December 2020. Vaccination of patients with rheumatic diseases is recommended, as they are considered at higher risk of severe COVID-19 than the general population. Patients with rheumatic disease have largely been excluded from vaccine phase 3 trials. This study explores the safety and reactogenicity of BNT162b2 among patients with rheumatic diseases. Patients with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA), median age 58.8 years, 285 subjects in total, were vaccinated twice with the BNT162b2 (Pfizer/BioNTech). Questionnaires on reactogenicity matching the original phase 3 study were answered seven days after completed vaccination. The majority of SLE and RA patients experienced either local (78.0%) or systemic reactions (80.1%). Only 1.8% experienced a grade-4 reaction. Compared to the original study, we found more frequent fatigue [Odds ratio (OR) 2.2 (1.7-2.8)], headache [OR 1.7 (1.3-2.2)], muscle pain [OR 1.8 (1.4-2.3)], and joint pain [OR 2.3 (1.7-3.0)] in patients. In contrast, the use of antipyretics was less frequent [OR 0.5 (0.3-0.6)]. Patients with SLE and RA experience reactogenicity to the Pfizer-BioNTech BNT162b2 COVID-19 vaccine. Reactogenicity was more frequent in patients, however, not more severe compared with healthy controls.


Subject(s)
Arthritis, Rheumatoid/immunology , COVID-19 Vaccines/adverse effects , COVID-19/prevention & control , Lupus Erythematosus, Systemic/immunology , Aged , Arthritis, Rheumatoid/complications , COVID-19 Vaccines/administration & dosage , COVID-19 Vaccines/immunology , Case-Control Studies , Female , Humans , Lupus Erythematosus, Systemic/complications , Male , Middle Aged , Patient Reported Outcome Measures , SARS-CoV-2 , Vaccination/adverse effects
13.
JCO Clin Cancer Inform ; 5: 615-621, 2021 05.
Article in English | MEDLINE | ID: covidwho-1379810

ABSTRACT

PURPOSE: Among patients receiving chemotherapy, symptom monitoring with electronic patient-reported outcomes (ePROs) is associated with improved clinical outcomes, satisfaction, and compliance with therapy. Standard approaches for ePRO implementation are not established, warranting evaluation in community cancer practices. We present implementation findings of ePRO symptom monitoring across a large multisite community oncology practice network. METHODS: Patients initiating a new systemic therapy at one of the 210 practice sites at Texas Oncology were invited to use the Navigating Cancer ePRO platform, with stepped-wedge implementation from July to December 2020. Participating patients received a weekly prompt by text message or e-mail to self-report common symptoms and well-being. Severe self-reported symptoms triggered a real-time notification to nursing triage to address the symptom. Enrollment and compliance were systematically tracked weekly with evaluation of barriers and facilitators to adoption and sustainability. RESULTS: Four thousand three hundred seventy-five patients planning systemic treatment were enrolled and participated. Seventy-three percent (1,841 of 2,522) of enrolled patients completed at least one ePRO assessment. Among these individuals, 64% (16,299 of 25,061) of available weekly ePRO assessments were completed. Over a 10-week period, compliance declined from 72% to 52%. Barriers currently being addressed include lack of a second reminder text or e-mail prompt, inconsistent discussion of reported ePROs by clinicians at visits, and COVID-related changes in workflow. Facilitators included ease of use and patient and staff engagement on the importance of PROs for symptom management. CONCLUSION: ePROs can be effectively implemented in community oncology practice. Utilization of ePROs is high but diminishes over time without attention to barriers. Ongoing work to address barriers and optimize compliance are underway.


Subject(s)
COVID-19 , Patient Reported Outcome Measures , Electronics , Humans , Pandemics , SARS-CoV-2 , Surveys and Questionnaires , Texas/epidemiology
14.
J Vis Commun Med ; 44(4): 166-173, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1366947

ABSTRACT

Audiovisual distraction (AVD) is an expanding anxiety-minimising technique for patients undergoing surgery under regional anaesthesia (RA). We evaluated patient satisfaction with AVD in the setting of conscious RA for limb surgery using patient reported experience measures (PREMs). Service evaluation using PREMs, via standardised post-operative patient questionnaire, in a single tertiary referral centre for orthopaedic and plastic surgery over an 18-month period. Outcome measures included impact of AVD on peri-operative anxiety, comfort, satisfaction and comparison with previous general anaesthesia (GA) experiences. 50 adult patients undergoing elective limb surgery under RA ± sedation were provided with a wifi-enabled tablet device peri-operatively and completed a post-operative questionnaire regarding their AVD experience. 100% were satisfied with AVD and would recommend to others. 78% were anxious before or during the procedure, of which 97% felt that AVD improved their anxiety levels. Of the 94% with previous experience of GA, 89% reported a 'better' experience with RA + AVD. PREMs regarding AVD were encouraging and lay a foundation for further clinical service development and research into incorporation of this technique for appropriate RA patient groups. Our findings are particularly relevant in the COVID-affected era of anaesthesia as RA benefits and strategies to minimise anxiety are reappraised.


Subject(s)
Anesthesia, Conduction , COVID-19 , Adult , Anxiety/prevention & control , Humans , Patient Reported Outcome Measures , SARS-CoV-2
15.
J Drugs Dermatol ; 20(8): 868-873, 2021 Aug 01.
Article in English | MEDLINE | ID: covidwho-1359537

ABSTRACT

The Symposium on Hidradenitis Suppurativa Advances (SHSA) is a joint meeting of the United States Hidradenitis Suppurativa Foundation (HSF) and the Canadian Hidradenitis Suppurativa Foundation (CHSF). This annual cross-disciplinary meeting brings together experts from around the world in an opportunity to discuss the most recent advances in the study of hidradenitis suppurativa (HS). The fifth annual meeting was held virtually on 9-11 October 2020. A record 347 attendees, including 79 people with HS, from 20 different countries attended. Key take-home points included: Clinicians can optimize each visit by listening, provide education, and discuss treatments; a patient decision aid for HS (HS-PDA) is a freely available tool (www.informed-decisions.org); COVID-19 severity in HS patients was not different for patients treated with/without a biologic; comorbidity screening recommendations will be published soon; neutrophil extracellular traps (NETs) may play a role in HS; memory B cells, T helper 1 cytokines, and interleukin 1 signaling contributes to HS pathogenesis and are targets for new therapies; novel therapies are showing promise including a new JAK1 inhibitor (INCB054707) and brodalumab; and HS-specific outcome measures have emerged to better monitor disease severity, flare, and progression including a patient reported measure (HiSQOL) and an HS-specific investigator global assessment. J Drugs Dermatol. 2021;20(8):868-873. doi:10.36849/JDD.5836.


Subject(s)
Hidradenitis Suppurativa , COVID-19 , Canada , Comorbidity , Congresses as Topic , Cytokines , Decision Support Techniques , Disease Progression , Extracellular Traps , Hidradenitis Suppurativa/diagnosis , Hidradenitis Suppurativa/therapy , Humans , Patient Reported Outcome Measures , Severity of Illness Index
16.
Mult Scler Relat Disord ; 55: 103189, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1336764

ABSTRACT

BACKGROUND: The COVID-19 vaccines are currently recommended for people with rare neuroimmunological diseases such as neuromyelitis optica spectrum disorder (NMOSD), MOG-antibody disease (MOGAD), and transverse myelitis. However, the safety profile of the vaccines in this population is uncertain. OBJECTIVE: To report real-world safety data of the COVID-19 vaccines in persons with rare neuroimmunological diseases. METHODS: An anonymous survey was distributed to patients recruited on social media. Participants answered general demographic and disease-related questions, and specific questions about their experiences with the COVID-19 vaccines. RESULTS: 438 participants completed the questionnaire. The median age was 51 (range 18-82 years); 366 were female (83.6%); 102 (23.3%) had associated comorbidities, and 354 (80.1%) were treated with immunotherapies. 242 participants (55.3%) reported a diagnosis of NMOSD; 99 (22.6%) had MOGAD; 79 (18%) had transverse myelitis. 239 participants (66.2%) were younger than 55 years of age. 138 participants (31.5%) reported earlyadverse events. Of these, 93 (67.4%) were < 55 years old, and 45 (32.6%) were > 55 years old (p=0.0086). The most common adverse events were local reactions, including pain, redness, and swelling at the injection site, reported by 155 participants (35.4%). 73 participants (16.7%) reported new or worsening neurological symptoms following the vaccination. Most symptoms occurred within the first week after vaccination and resolved within three days. CONCLUSIONS: This survey indicates an overall favorable safety and tolerability profile of the COVID-19 vaccines among persons with rare neuroimmunological diseases. Longer-term studies are warranted to confirm these data.


Subject(s)
COVID-19 , Neuromyelitis Optica , Adolescent , Adult , Aged , Aged, 80 and over , Aquaporin 4 , COVID-19 Vaccines , Female , Humans , Middle Aged , Patient Reported Outcome Measures , SARS-CoV-2 , Young Adult
17.
J Ambul Care Manage ; 43(4): 278-285, 2020.
Article in English | MEDLINE | ID: covidwho-1319200

ABSTRACT

Patient-reported health confidence is a valuable indicator of effective patient-clinician communication, which improves outcomes and reduces costly care use. This national survey examines health confidence attainment in the United States before the COVID pandemic strained health care resources. Health confidence was low for both the percentage of respondents who were financially secure (36%) and financially insecure (18%). Persons enrolled in employer- and union-sponsored plans, who had the highest household income, did not report higher levels of health confidence. Health policy should support the measurement and monitoring of health confidence in clinical practice to improve population health and maximize resource efficiency.


Subject(s)
Pandemics , Patient Reported Outcome Measures , Adolescent , Adult , Aged , COVID-19 , Female , Health Care Costs , Health Policy , Humans , Male , Middle Aged , Quality of Health Care , SARS-CoV-2 , United States , Young Adult
18.
Cancer ; 127(21): 4072-4080, 2021 11 01.
Article in English | MEDLINE | ID: covidwho-1320064

ABSTRACT

BACKGROUND: As the coronavirus disease 2019 (COVID-19) pandemic continues to spread, it remains unclear how vulnerable populations with preexisting health conditions like cancer have been affected. METHODS: Between July and September of 2020, the authors conducted a cross-sectional study that surveyed 2661 patients with breast cancer who were registered in the Chicago Multiethnic Epidemiologic Breast Cancer Cohort and received 1300 responses (71.5% White patients and 22.4% Black patients). The survey measured the psychosocial well-being of participants before and during the COVID-19 pandemic and examined whether they experienced any type of financial challenges or treatment disruption. RESULTS: The results indicated that feelings of isolation increased significantly during the pandemic. Meanwhile, the overall median isolation/stress score was 1.2 on a scale from 0 (never) to 4 (always), which was not significantly different between White patients and Black patients. One-third of patients experienced some type of financial challenge during this time. Medicaid recipients, of whom almost 80% were Black, were more likely to experience financial challenges. In addition, approximately one-fourth of patients experienced difficulty getting treatment. CONCLUSIONS: This study indicates that the quality of life of patients with breast cancer and their scheduled treatments have been adversely affected during the COVID-19 pandemic. These findings suggest that more support should be provided by hospital centers and the medical research community to patients with cancer during this challenging pandemic. LAY SUMMARY: The authors surveyed patients with breast cancer in Chicago using a questionnaire to examine how their lives have been affected during the coronavirus disease 2019 (COVID-19) pandemic. The results indicate that the lives of patients with breast cancer and their scheduled treatments have been adversely affected during the pandemic. In addition, patients who were covered by Medicaid, most of whom were Black, were more likely to experience financial challenges. The findings suggest that hospital centers and the medical research community should reach out and provide more information to support patients with cancer during this challenging pandemic.


Subject(s)
Breast Neoplasms/therapy , COVID-19/epidemiology , Pandemics , Quality of Life , Withholding Treatment , African Continental Ancestry Group/statistics & numerical data , Aged , American Natives/statistics & numerical data , Asian Continental Ancestry Group/statistics & numerical data , Breast Neoplasms/ethnology , Chicago/epidemiology , Chicago/ethnology , Cross-Sectional Studies , European Continental Ancestry Group/statistics & numerical data , Female , Financial Stress/epidemiology , Financial Stress/ethnology , Health Services Accessibility/statistics & numerical data , Health Surveys/statistics & numerical data , Healthcare Disparities/ethnology , Healthcare Disparities/statistics & numerical data , Hispanic Americans/statistics & numerical data , Humans , Medicare/statistics & numerical data , Middle Aged , Patient Reported Outcome Measures , Prevalence , Social Isolation/psychology , United States
19.
Lupus ; 30(11): 1747-1755, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1319451

ABSTRACT

OBJECTIVE: The aim of this study was to evaluate the initial impact of the COVID-19 pandemic on individuals with systemic lupus erythematosus (SLE). METHODS: Patients with SLE participating in a multi-center longitudinal cohort study in New York and Boston were invited to complete a supplemental web-based questionnaire in the summer of 2020. Participants completed standardized patient-reported outcome (PRO) measures and a combination of Likert scale and open-ended questions exploring the impact of the COVID-19 pandemic on their health and access to health care. Changes in PROs were evaluated with paired t-tests and frequencies of worsened symptoms were calculated. A thematic qualitative analysis was conducted on free text responses. RESULTS: Of 97 patients invited, 63 (65%) completed a supplemental questionnaire. Nearly 50% of respondents exhibited increases in anxiety (47.5%) and depression (48.3%) and over 40% scored worse in measures of pain interference, fatigue, and cognitive abilities. Respondents with pre-existing diagnoses of anxiety did not differ from other participants in PRO scores, but were more than three times as likely to report worsened health status. Patients denied difficulties accessing medications (85%) or medical care (84%) and over 50% participated in telehealth visits. Anxiety and increased health risks due to immunosuppression were recurring themes in free text responses. CONCLUSIONS: SLE patients experienced a significant physical and emotional toll in the initial months of the COVID-19 pandemic. Comprehensive patient-centered care, including monitoring and addressing anxiety and health-related quality of life, is critical to improving health outcomes in this population during the ongoing health crisis.


Subject(s)
Anxiety/psychology , Depression/psychology , Lupus Erythematosus, Systemic/psychology , Pain/psychology , Quality of Life , Adult , Aged , COVID-19/epidemiology , Humans , Longitudinal Studies , Male , Middle Aged , Pandemics , Patient Reported Outcome Measures , Prospective Studies , SARS-CoV-2 , Telemedicine/statistics & numerical data
20.
J Am Med Inform Assoc ; 28(10): 2265-2268, 2021 09 18.
Article in English | MEDLINE | ID: covidwho-1303917

ABSTRACT

The collection of patient reported outcomes (PROs) allows us to incorporate the patient's voice into their care in a quantifiable, validated manner. Large-scale collection of PROs is facilitated by the electronic health record and its portal, though, historically, patients have eschewed the portal and completed patient-reported outcome measures in the clinic via tablet. Furthermore, access and use of the portal is associated with known racial inequities. Our institution oversees the largest clinical PRO program in the world, and has a long history of racially equitable PRO completion rates via tablet. However, when the COVID-19 pandemic forced us to remove tablets from clinics and rely exclusively on portal use for PRO completion, profound racial disparities resulted immediately. Our experience quantifiably demonstrates the magnitude of inequity that the portal, in its current configuration, generates and serves as a cautionary tale to other health care systems and electronic health records.


Subject(s)
COVID-19 , Electronic Health Records , Pandemics , Patient Reported Outcome Measures , Digital Divide , Healthcare Disparities , Humans , SARS-CoV-2
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