Patient-reported Experience Measure for Neuro-oncology Telephone Clinics during the COVID-19 Pandemic.
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ABSTRACT:
SUBMITTER: Ghimire P
PROVIDER: S-EPMC7438996 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:AimThe COVID-19 pandemic led to limit patients' visits to the neuro-urology department. Telemedicine was seen as a pragmatic solution to provide follow-up care. This study aimed to assess the efficiency and satisfaction of a telephone consultation in neuro-urology.MethodsDuring the pandemic, the scheduled medical visits were converted into telephone consultation. For each teleconsultation, the physician assessed the efficiency and the patient-rated global satisfaction of the teleconsultation. The physician and the patient assessed whether this teleconsultation replaced a physical visit.ResultsAbout 358 neurologic patients were included in the study. The mean efficiency of the telephone consultation was 9.3/10 (±1.5). The mean global satisfaction was 9.0/10 (±1.3). The majority of the patients (52.4%) would prefer a physical consultation. 90.2% might convert some clinic visits to teleconsultations in the future. No agreement was found between the patient and the physician when they were asked if the teleconsultation replaced the physical consultation initially scheduled (weight kappa = 0.02; 95% confidence interval = [-0.06 to 0.11]). Cognitive impairment, difficulty to obtain relevant information, and lack of physical examination were unfavorable to the efficiency of the teleconsultation. Cognitive impairment, embarrassing nature of the teleconsultation, and preference for a physical consultation were unfavorable to satisfaction of the patient.ConclusionTelemedicine in neuro-urology was associated with a high satisfaction of the patients and was described as efficient by the physicians. Despite this, the majority of the patients reported a preference for physical consultation. The COVID-19 pandemic might be an opportunity to refine our practices in neuro-urology and to develop telemedicine.
| S-EPMC8251389 | biostudies-literature
Project description:Abstract BACKGROUND The American Academy of Neurology Institute and Society for Neuro-Oncology recommend multidisciplinary tumor board (MTB) meetings as a quality metric in neuro-oncology. With the COVID-19 pandemic resulting in travel restrictions, we expanded our existing MTB by transitioning to a virtual format that maintained our commitment to providing consultation for primary CNS tumor cases. This transition permitted participation by neuro-oncology teams from over 30 Brain Tumor Trials Collaborative (BTTC)/National Cancer Institute-Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) centers across the United States. Here, we describe results from opening our MTB remotely to these teams. METHODS We retrospectively reviewed records from remote MTB meetings held between April 2020 and March 2021. To gauge the impact of our MTB on clinical management, we administered a brief survey querying BTTC members. RESULTS Twenty-eight providers presented 41 cases during 24 virtual MTB meetings (range: 1-4 cases per meeting). Two cases (5%) were presented only for educational value. Approximately half (54%) of the cases discussed dealt with diagnosis/management of an NCI-CONNECT rare CNS tumor. During MTB discussions of the 39 cases seeking diagnosis/management recommendations, 32% received clinical trial recommendations, 10% were suggested to enroll in the NCI Neuro-Oncology Branch (NOB) Natural History Study (NCT02851706), 17% received a recommendation to obtain central neuropathology review, and 100% received recommendations for further disease management. Most BTTC survey respondents (83%) found these recommendations impactful in the management/treatment of their presented case or generally useful/informative for their clinical practice. CONCLUSION We describe the feasibility and utility of an innovative virtual multi-institutional MTB. These novel remote meetings allowed for discussion of complex neuro-oncology cases and recommendations from experts, particularly important for those with rare CNS tumors. Our study’s findings during the COVID-19 pandemic of the value of providing remote access to MTBs should apply post-pandemic.
| S-EPMC8598475 | biostudies-literature
Project description:BackgroundIt remains unknown how the COVID-19 pandemic has changed neuro-oncology clinical practice, training, and research efforts.MethodsWe performed an international survey of practitioners, scientists, and trainees from 21 neuro-oncology organizations across 6 continents, April 24-May 17, 2020. We assessed clinical practice and research environments, institutional preparedness and support, and perceived impact on patients.ResultsOf 582 respondents, 258 (45%) were US-based and 314 (55%) international. Ninety-four percent of participants reported changes in their clinical practice. Ninety-five percent of respondents converted at least some practice to telemedicine. Ten percent of practitioners felt the need to see patients in person, specifically because of billing concerns and pressure from their institutions. Sixty-seven percent of practitioners suspended enrollment for at least one clinical trial, including 62% suspending phase III trial enrollments. More than 50% believed neuro-oncology patients were at increased risk for COVID-19. Seventy-one percent of clinicians feared for their own personal safety or that of their families, specifically because of their clinical duties; 20% had inadequate personal protective equipment. While 69% reported increased stress, 44% received no psychosocial support from their institutions. Thirty-seven percent had salary reductions and 63% of researchers temporarily closed their laboratories. However, the pandemic created positive changes in perceived patient satisfaction, communication quality, and technology use to deliver care and mediate interactions with other practitioners.ConclusionsThe pandemic has changed treatment schedules and limited investigational treatment options. Institutional lack of support created clinician and researcher anxiety. Communication with patients was satisfactory. We make recommendations to guide clinical and scientific infrastructure moving forward and address the personal challenges of providers and researchers.
| S-EPMC7928618 | biostudies-literature
Project description:ObjectivesMeasuring patient experience of gastrointestinal (GI) procedures is a key component of evaluation of quality of care. Current measures of patient experience within GI endoscopy are largely clinician derived and measured; however, these do not fully represent the experiences of patients themselves. It is important to measure the entirety of experience and not just experience directly during the procedure. We aimed to develop a patient-reported experience measure (PREM) for GI procedures.DesignPhase 1: semi-structured interviews were conducted in patients who had recently undergone GI endoscopy or CT colonography (CTC) (included as a comparator). Thematic analysis identified the aspects of experience important to patients. Phase 2: a question bank was developed from phase 1 findings, and iteratively refined through rounds of cognitive interviews with patients who had undergone GI procedures, resulting in a pilot PREM. Phase 3: patients who had attended for GI endoscopy or CTC were invited to complete the PREM. Psychometric properties were investigated. Phase 4 involved item reduction and refinement.ResultsPhase 1: interviews with 35 patients identified six overarching themes: anxiety, expectations, information & communication, embarrassment & dignity, choice & control and comfort. Phase 2: cognitive interviews refined questionnaire items and response options. Phase 3: the PREM was distributed to 1650 patients with 799 completing (48%). Psychometric properties were found to be robust. Phase 4: final questionnaire refined including 54 questions assessing patient experience across five temporal procedural stages.ConclusionThis manuscript gives an overview of the development and validation of the Newcastle ENDOPREM™, which assesses all aspects of the GI procedure experience from the patient perspective. It may be used to measure patient experience in clinical care and, in research, to compare patients' experiences of different endoscopic interventions.
| S-EPMC8547355 | biostudies-literature
Project description:BACKGROUND:Mobile health (mHealth) technologies are increasingly used in various medical fields. However, the potential of mHealth to improve patient care in radiotherapy by acquiring electronic patient reported outcome measures (ePROMs) during treatment has been poorly studied so far. OBJECTIVE:The aim of this study was to develop and implement a novel Web app (PROMetheus) for patients undergoing radiotherapy. Herein, we have reported our experience with a focus on feasibility, patient acceptance, and a correlation of ePROMs with the clinical course of the patients. METHODS:In the period between January and June 2018, 21 patients used PROMetheus to score side effects, symptoms, and quality of life-related parameters during and after their treatment. Items of the Patient Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) were chosen based on the primary site of disease, 27 items for head and neck tumors, 21 items for thoracic tumors, and 24 items for pelvic tumors. RESULTS:In total, 17 out of the 21 patients (81%) regularly submitted ePROMs and more than 2500 data points were acquired. An average of 5.2, 3.5, and 3.3 min was required to complete the head and neck, thorax, and pelvis questionnaires, respectively. ePROMS were able to detect the occurrence of both expected and unexpected side effects during the treatment. In addition, a gradual increase in the severity of side effects over the course the treatment and their remission afterward could be observed with ePROMs. In total, 9 out of the 17 patients (53%), mostly those with head and neck and thoracic cancers, reported PRO-CTCAE grade III or IV fatigue with severe impairments of activities of daily life. CONCLUSIONS:This study shows the successful implementation of an ePROM system and a high patient acceptance. ePROMs have a great potential to improve patient care in radiotherapy by providing a comprehensive documentation of symptoms and side effects, especially of ones that are otherwise underreported.
| S-EPMC6685133 | biostudies-literature
Project description:BackgroundA psychometrically validated instrument to measure patient experience in Chinese public hospitals would be useful and is currently lacking. Our research team developed the Patient-Reported Experience Measure for Care in Chinese Hospitals (PREM-CCH). We aimed to validate this PREM-CCH in the present study.MethodsData were drawn from a cross-sectional patient survey in 2016. Complete responses from 2293 outpatients and 1510 inpatients were included. Separate psychometric evaluation was carried out on outpatient and inpatient PREM-CCHs in terms of exploratory factor analysis, internal consistency, construct validity and criterion validity.ResultsThe validated outpatient PREM-CCH contained 22 items and five Factors, i.e. Communication and information, Professional competence, Medical costs, Efficiency, and Hospital recommendation. The validated inpatient PREM-CCH contained 19 items and six Factors, i.e. Communication and information, Professional competence, Medical costs, Efficiency, Health outcomes, and Hospital recommendation. The PREM-CCH showed satisfactory internal consistency, construct validity and criterion validity.ConclusionsThe PREM-CCH is one of the first validated instruments capturing patient experience of care in the context of Chinese public hospitals. It performed well in the psychometric evaluation. It consists of a basic set of items important to patients that could be applicable to public hospitals in China and actionable to inform quality improvement initiatives.
| S-EPMC7791723 | biostudies-literature
Project description:IntroductionMany institutions are attempting to implement patient-reported outcome (PRO) measures. Because PROs often change clinical workflows significantly for patients and providers, implementation choices can have major impact. While various implementation guides exist, a stepwise list of decision points covering the full implementation process and drawing explicitly on a sociotechnical conceptual framework does not exist.MethodsTo facilitate real-world implementation of PROs in electronic health records (EHRs) for use in clinical practice, members of the EHR Access to Seamless Integration of Patient-Reported Outcomes Measurement Information System (PROMIS) Consortium developed structured PRO implementation planning tools. Each institution pilot tested the tools. Joint meetings led to the identification of critical sociotechnical success factors.ResultsThree tools were developed and tested: (1) a PRO Planning Guide summarizes the empirical knowledge and guidance about PRO implementation in routine clinical care; (2) a Decision Log allows decision tracking; and (3) an Implementation Plan Template simplifies creation of a sharable implementation plan. Seven lessons learned during implementation underscore the iterative nature of planning and the importance of the clinician champion, as well as the need to understand aims, manage implementation barriers, minimize disruption, provide ample discussion time, and continuously engage key stakeholders.ConclusionsHighly structured planning tools, informed by a sociotechnical perspective, enabled the construction of clear, clinic-specific plans. By developing and testing three reusable tools (freely available for immediate use), our project addressed the need for consolidated guidance and created new materials for PRO implementation planning. We identified seven important lessons that, while common to technology implementation, are especially critical in PRO implementation.
| S-EPMC8057386 | biostudies-literature
Project description:BackgroundBrain cancer has a strong impact on health-related quality of life (HRQoL), and its evaluation in clinical practice can improve the quality of care provided. The aim of this project was to integrate routine collection of HRQoL information from patients with brain tumor or metastasis in 2 specialized United Kingdom tertiary centers, and to evaluate the implementation process.MethodsSince October 2016, routine collection of electronic self-reported HRQoL information has been progressively embedded in the participating centers using standard questionnaires. During the first year, the project was implemented, and the process evaluated, through regular cycles of process evaluation followed by an action plan, monitoring of questionnaire completion rates, and assessment of patient views.ResultsMain challenges encountered included reluctance to change usual practice and limited resources. Key measures for success included strong leadership of senior staff, involvement of stakeholders in project design and evaluation, and continuous strategic support to professionals. Final project workflow included 6 process steps, 1 decision step, and 4 outputs. Questionnaires were mostly self-completed (75.1%), and completion took 6-9 minutes. Most patients agreed that the questionnaire items were easy to understand (97.0%), important for them (93.0%), and helped them think what they wanted to discuss in their clinical consultation (75.4%).ConclusionsIntegrating HRQoL information as a routine part of clinical assessments has the potential to enhance individually tailored patient care in our institutions. Challenges involved in innovations of this nature can be overcome through a systematic approach involving strong leadership, wide stakeholder engagement, and strategic planning.
| S-EPMC6656295 | biostudies-literature
Project description:ObjectivesPressures on healthcare systems due to COVID-19 has impacted patients without COVID-19 with surgery disproportionally affected. This study aims to understand the impact on the initial management of patients with brain tumours by measuring changes to normal multidisciplinary team (MDT) decision making.DesignA prospective survey performed in UK neurosurgical units performed from 23 March 2020 until 24 April 2020.SettingRegional neurosurgical units outside London (as the pandemic was more advanced at time of study).ParticipantsRepresentatives from all units were invited to collect data on new patients discussed at their MDT meetings during the study period. Each unit decided if management decision for each patient had changed due to COVID-19.Primary and secondary outcome measuresPrimary outcome measures included number of patients where the decision to undergo surgery changed compared with standard management usually offered by that MDT. Secondary outcome measures included changes in surgical extent, numbers referred to MDT, number of patients denied surgery not receiving any treatment and reasons for any variation across the UK.Results18 units (75%) provided information from 80 MDT meetings that discussed 1221 patients. 10.7% of patients had their management changed-the majority (68%) did not undergo surgery and more than half of this group not undergoing surgery had no active treatment. There was marked variation across the UK (0%-28% change in management). Units that did not change management could maintain capacity with dedicated oncology lists. Low volume units were less affected.ConclusionCOVID-19 has had an impact on patients requiring surgery for malignant brain tumours, with patients receiving different treatments-most commonly not receiving surgery or any treatment at all. The variations show dedicated cancer operating lists may mitigate these pressures.Study registrationThis study was registered with the Royal College of Surgeons of England's COVID-19 Research Group (https://www.rcseng.ac.uk/coronavirus/rcs-covid-research-group/).
| S-EPMC7430412 | biostudies-literature
Project description:BACKGROUND:The coronavirus 2019 (COVID-19) pandemic is a clinical situation that could be used as prototype for implementation of new systems of care. METHODS:This was a single-center, cross-sectional study. We evaluated the feasibility of a strategy based on the conversion of face-to-face visits to telephone consultations to manage IBD outpatients during the COVID-19 pandemic. A 4-item telephone survey (3 closed questions and a 100-point numeric description scale) was conducted to evaluate satisfaction of patients with telephone consultations. RESULTS:Between March 11 and April 8, 2020, 98% of the 216 scheduled face-to-face visits could be converted to telephone consultations, and we resolved an additional 162 urgent consultations by telephone. The rate of IBD-related hospitalization and visits to the emergency department decreased by 50% and 58%, respectively, compared with rates in the same period the previous year. The 4-item survey was conducted in 171 outpatients. In closed questions, patients reported a very high degree of satisfaction with telephone consultations, with no differences between scheduled (n = 123) and urgent consultations (n = 48; P = NS). The overall satisfaction rating with the telephone consultation evaluated with the numerical description scale was 94% and 93% for scheduled and urgent consultations, respectively (P < 0.82). Less than 20% of patients would have preferred a face-to-face visit to the telephone consultation at the time. CONCLUSIONS:A strategy based on the conversion of face-to-face visits to telephone consultations was able to guarantee a minimum standard quality of care during the COVID-19 pandemic. Patients reported a very high degree of satisfaction with telephone consultations.
| S-EPMC7454654 | biostudies-literature