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BACKGROUND: Patient decision aids (PDAs) should provide evidence-based information so patients can make informed decisions. Yet, PDA developers do not have an agreed-upon process to select, synthesize and present evidence in PDAs. OBJECTIVE: To reach the consensus on an evidence summarization process for PDAs. DESIGN: A two-round modified Delphi survey. SETTING AND PARTICIPANTS: A group of international experts in PDA development invited developers, scientific networks, patient groups and listservs to complete Delphi surveys. DATA COLLECTION: We emailed participants the study description and a link to the online survey. Participants were asked to rate each potential criterion (omit, possible, desirable, essential) and provide qualitative feedback. ANALYSIS: Criteria in each round were retained if rated by >80% of participants as desirable or essential. If two or more participants suggested rewording, reordering or merging, the steering group considered the suggestion. RESULTS: Following two Delphi survey rounds, the evidence summarization process included defining the decision, reporting the processes and policies of the evidence summarization process, assembling the editorial team and managing (collect, manage, report) their conflicts of interest, conducting a systematic search, selecting and appraising the evidence, presenting the harms and benefits in plain language, and describing the method of seeking external review and the plan for updating the evidence (search, selection and appraisal of new evidence). CONCLUSION: A multidisciplinary stakeholder group reached consensus on an evidence summarization process to guide the creation of high-quality PDAs. PATIENT CONTRIBUTION: A patient partner was part of the steering group and involved in the development of the Delphi survey.
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Técnicas de Apoyo para la Decisión , Proyectos de Investigación , Consenso , Técnica Delphi , Humanos , Encuestas y CuestionariosRESUMEN
BACKGROUND: Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementation project, we examined the work involved in integrating an encounter PDA for symptomatic uterine fibroids into Epic EHR systems. OBJECTIVE: This study aims to identify the steps and time required to integrate a PDA into the Epic EHR system and examine facilitators and barriers to the integration effort. METHODS: We conducted a case study at 5 academic medical centers in the United States. A clinical champion at each institution liaised with their Epic EHR team to initiate the integration of the uterine fibroid Option Grid PDAs into clinician-facing menus. We scheduled regular meetings with the Epic software analysts and an expert Epic technologist to discuss how best to integrate the tools into Epic for use by clinicians with patients. The meetings were then recorded and transcribed. Two researchers independently coded the transcripts and field notes before categorizing the codes and conducting a thematic analysis to identify the facilitators and barriers to EHR integration. The steps were reviewed and edited by an Epic technologist to ensure their accuracy. RESULTS: Integrating the uterine fibroid Option Grid PDA into clinician-facing menus required an 18-month timeline and a 6-step process, as follows: task priority negotiation with Epic software teams, security risk assessment, technical review, Epic configuration; troubleshooting, and launch. The key facilitators of the process were the clinical champions who advocated for integration at the institutional level and the presence of an experienced technologist who guided Epic software analysts during the build. Another facilitator was the use of an emerging industry standard app platform (Health Level 7 Substitutable Medical Applications and Reusable Technologies on Fast Healthcare Interoperability Resources) as a means of integrating the Option Grid into existing systems. This standard platform enabled clinicians to access the tools by using single sign-on credentials and prevented protected health information from leaving the EHR. Key barriers were the lack of control over the Option Grid product developed by EBSCO (Elton B Stephens Company) Health; the periodic Epic upgrades that can result in a pause on new software configurations; and the unforeseen software problems with Option Grid (ie, inability to print the PDA), which delayed the launch of the PDA. CONCLUSIONS: The integration of PDAs into the Epic EHR system requires a 6-step process and an 18-month timeline. The process required support and prioritization from a clinical champion, guidance from an experienced technologist, and a willing EHR software developer team.
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Registros Electrónicos de Salud , Programas Informáticos , Sistemas de Computación , Técnicas de Apoyo para la Decisión , HumanosRESUMEN
Background: People often use affective forecasts, or predictions about how a decision will make them feel, to guide medical and health decision making. However, these forecasts are susceptible to biases and inaccuracies that can have consequential effects on decision making and health. Purpose: A meta-analysis was performed to determine the effectiveness of intervening to address affective forecasting as a means of helping patients make better health-related choices. Methods: We included between-subjects experimental and intervention studies that targeted variables related to affective forecasting (e.g., anticipated regret, anticipated affect) as a means of changing health behaviors or decisions. We determined the overall effect of these interventions on targeted affective constructs and behavioral outcomes, and whether conceptual and methodological factors moderated these effects. Results: A total of 133 independent effect sizes were identified from 37 publications (N = 72,020). Overall, affective forecasting interventions changed anticipated regret, d = 0.24, 95% confidence interval (CI) (0.15, 0.32), p < .001, behavior, d = 0.29, 95% CI (0.13, 0.45), p < .001, and behavioral intentions, d = 0.19, 95% CI (0.11, 0.28), p < .001, all measured immediately postintervention. Interventions did not change anticipated positive and negative affect, and effects on intentions and regret did not extend to follow-up time points, ps > .05. Generally, effects were not moderated by conceptual model, intervention intensity, or behavioral context. Conclusions: Affective forecasting interventions had a small consistent effect on behavioral outcomes regardless of intervention intensity and conceptual framework, suggesting such constructs are promising intervention targets across several health domains.
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Anticipación Psicológica/fisiología , Toma de Decisiones/fisiología , Emociones/fisiología , Predicción , Conductas Relacionadas con la Salud/fisiología , Educación en Salud/estadística & datos numéricos , HumanosRESUMEN
BACKGROUND: Implementing patient decision aids in clinic workflow has proven to be a challenge for healthcare organizations and physicians. Our aim was to determine the organizational strategies, motivations, and facilitating factors to the routine implementation of Option Grid™ encounter decision aids at two independent settings. METHOD: Case studies conducted by semi-structured interview, using the Normalization Process Theory (NPT) as a framework for thematic analysis. Twenty three interviews with physicians, nurses, hospital staff and stakeholders were conducted at: 1) CapitalCare Medical Group in Albany, New York; 2) HealthPartners Clinics in Minneapolis, Minnesota. RESULTS: 'Coherent' motivations were guided by financial incentives at CapitalCare, and by a 'champion' physician at HealthPartners. Nurses worked 'collectively' at both settings and played an important role at sites where successful implementation occurred. Some physicians did not understand the perceived utility of Option Grid™, which led to varying degrees of implementation success across sites. The appraisal work (reflexive monitoring) identified benefits, particularly in terms of information provision. Physicians at both settings, however, were concerned with time pressures and the suitability of the tool for patients with low levels of health literacy. CONCLUSION: Although both practice settings illustrated the mechanisms of normalization postulated by the theory, the extent to which Option Grid™ was routinely embedded in clinic workflow varied between sites, and between clinicians. Implementation of new interventions will require attention to an identified rationale (coherence), and to the collective action, cognitive participation, and assessment of value by organizational members of the organization.
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Técnicas de Apoyo para la Decisión , Innovación Organizacional , Actitud del Personal de Salud , Difusión de Innovaciones , Motivación , Objetivos Organizacionales , Aceptación de la Atención de SaludRESUMEN
BACKGROUND: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. OBJECTIVE: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. PATIENT OR FAMILY INVOLVEMENT: Two family members of seriously ill individuals advised. METHODS: We performed a literature review and developed a prototype agenda-setting tool. We modified the tool based on cognitive interviews with patients, families and clinicians. We piloted the tool with patients, care partners and clinicians to gain an initial impression of its perceived value. RESULTS: Interviews with eight patients, eight care partners and seven clinicians, resulted in refinements to the initial tool, including supplementation with visual cues. In the pilot test, seven clinicians used the tool with 11 patients and 12 family members. Qualitatively, patients and care partners reported the guide helped them consider and assert their priorities. Clinicians reported the tool complemented usual practice. Most participants reported no distress, disruption or confusion. DISCUSSION: Patients, care partners and clinicians appreciated centering patient priorities in serious illness visits using the agenda-setting tool. More thorough evaluation is required. PRACTICAL VALUE: The agenda-setting tool may operationalize elements of good serious illness care.
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Comunicación , Atención Dirigida al Paciente , Humanos , Relaciones Médico-PacienteRESUMEN
BACKGROUND: The implementation of shared decision-making and patient decision aids (PDAs) is impeded by clinicians' attitudes. OBJECTIVE: To develop a measure of clinician attitude towards PDAs. METHODS: To develop the ADOPT measure, we used four stages, culminating in measure responses by medically qualified clinicians, 25 from each of the following specialties: emergency medicine, family medicine, oncology, obstetrics and gynaecology, orthopaedics, and psychiatry. To assess validity, we also posed three questions to assess the participants' attitudinal and behavioural endorsement of PDAs. Allocating a point per adjective, we calculated the sum as well as positive and negative scores. We used univariate logistic regression to determine associations between the scores and attitudinal or behavioural endorsements. RESULTS: 152 clinicians completed the measure. 'Time-saving' (39%) and 'easy' (34%) were the most frequently selected adjectives. 'Time-consuming' and 'unfamiliar' were the most frequently selected negative adjectives (both 19%). The sum scores were significantly associated with behavioural endorsement of PDAs. DISCUSSION: Clinicians were able to respond to adjective-selection methods and the ADOPT measure could help assess clinician attitudes to PDAs. Validation will require further research. PRACTICE IMPLICATIONS: The ADOPT measure could help identify the extent and source of attitudinal resistance.
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Toma de Decisiones , Participación del Paciente , Actitud del Personal de Salud , Técnicas de Apoyo para la Decisión , Medicina Familiar y Comunitaria , Humanos , Participación del Paciente/métodosRESUMEN
OBJECTIVE: Our aim was to use critical discourse analysis (CDA) to examine the most widely cited definitions of shared decision making so that we can evaluate how language is used to position participants. Based on our conceptual understanding, we presumed that shared decision making involves acts of communication where processes are collaborative. METHODS: We used a CDA lens to closely examine the phrases, semantics, syntax, implied functions, and the social actions proposed in SDM definition texts. We conducted a systematic search guided by the PRISMA guidelines, to identify the most widely cited definitions of SDM. RESULTS: A total of 72 studies met our inclusion criteria. While SDM is not consistently defined, it was striking to find that clinicians are constructed as active whereas patients were viewed to be passive participants. The definitions construct SDM to be a gift that the clinician has the power to offer, and the relationship in the definitions appears asymmetric, in which only one party seems to speak. CONCLUSIONS: The SDM definitions examined convey a process characterized by a clinician who speaks, while a patient mostly listens, and is invited to contribute. An alternative definition might be constructed through references to joint activity via sentences in active voice. PRACTICE IMPLICATIONS: Clinicians may be influenced by definitions of SDM that reinforce the positionality of active speaker versus passive recipient. Clearer definitions that address the constructs of power and roles may help support the implementation of SDM.
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Toma de Decisiones Conjunta , Participación del Paciente , Comunicación , Toma de Decisiones , Humanos , Relaciones Médico-PacienteRESUMEN
There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients' goals and concerns are elicited appears to have an impact on responses and warrants further investigation.
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Enfermedades Inflamatorias del Intestino , Enfermedades Reumáticas , Enfermedad Crónica , Atención a la Salud , Objetivos , Humanos , Enfermedades Inflamatorias del Intestino/terapiaRESUMEN
Background: There is currently a paucity of data on urethral-related outcomes in metoidioplasty and phalloplasty gender affirming surgery (MaPGAS) with urethral lengthening (UL)and vaginectomy. Methods: A systematic review was performed utilizing MEDLINE, Web of Science, Cochrane Library, Europe PMC, OSF Preprints, and EMBASE. Methodologic quality was scored using Methodological Index for Non-Randomized Studies (MINORS) criteria. Four independent reviewers performed the article evaluation, data extraction, and methodologic quality assessment. Primary outcomes included standing to urinate/pee (STP), penile length, glanular meatus, urethral stricture, fistula, and flap necrosis. Results were summarized qualitatively with descriptive statistics. Results: A total of 2,881 articles of which 11 retrospective reviews of 13 cohorts met criteria; 4.3/16 average (avg) MINORS score. Six metoidioplasty cohorts had an average penile length of 6 cm, 74% reported successful STP, and a quarter developed stricture or fistula. Phalloplasty cohorts included radial forearm flap (RF) and Anterolateral Thigh flap (ALT). Of the 4 RF studies nearly a third developed a stricture or fistula and only one study reported 99% STP with a glanular meatus. Three ALT studies reported no length but had 80-90% STP with a glanular meatus and a quarter with stricture or fistula. Conclusions: Urethral complications in MaPGAS-UL in a cohort with prior vaginectomy are common and variably reported. Patient centered outcome measures as well as clearly defined outcome metrics created in partnership with community members are needed.
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There are numerous opportunities for shared decision-making (SDM) in cystic fibrosis (CF) care, yet little is known about patients' SDM experiences. This study evaluated SDM across 159 CF care programs (4024 participants) in the United States. Shared decision-making was assessed using the patient-reported collaboRATE measure, which was included in the CF Foundation's Patient and Family Experience of Care Survey over 18 months. Overall, 69% of respondents reported experiencing SDM. Respondents at pediatric programs were more likely to experience SDM than those at adult programs (72% vs 67%, P < .001). Multivariable logistic regression analyses showed a relationship between SDM and patient age, whereby SDM was less likely to occur with patients aged 18 to 24 years, compared to some younger and older age groups (P = .02-<.001). Shared decision-making was more likely to occur at pediatric programs when patients had better general health (P = .02-<.01), and at pediatric and adult programs when patients had better mental health (P = .02-<.001). Disparities in SDM experiences highlight a need to improve decision-making processes in CF care. Interventions tailored for improving SDM among specific patient populations may be particularly advantageous.
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BACKGROUND: Transgender and gender diverse (TGD) persons considering gender affirming therapy have to make many complex medical decisions, potentially without understanding the associated harms or benefits of hormonal and surgical interventions. Further, clinicians are often unaware of how best to communicate information to persons seeking gender affirming therapy. Patient decision aids have been developed to provide evidence-based information as a way to help people make decisions in collaboration with their clinicians. It is unclear whether such tools exist for persons seeking gender affirming therapy. The objective of our systematic review is to search for and determine the quality of any existing patient decision aids developed for TGD persons considering gender affirming therapy, and the outcomes associated with their use. METHODS: We adapted a search strategy for databases using two key concepts "decision support intervention/patient decision aid" and "transgender". We also conducted a brief online search of Google and abstracts from relevant conferences to identify any tools not published in the academic literature. Following study selection and data extraction, we used the International Patient Decision Aid Standards instrument (IPDASi) to assess the quality of patient decision aids, and the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) checklist to assess the quality of evaluations. RESULTS: We identified 762 studies; none were identified from Google or conference content. One tool met our inclusion criteria: an online, pre-encounter patient decision aid for transmasculine genital gender-affirming surgery developed in Amsterdam, translated in English and Dutch. The tool met all the IPDASi qualifying criteria, and scored a 17/28 on the certification criteria, and 57/112 on the quality criteria. The efficacy of the patient decision aid has not been evaluated. CONCLUSIONS: Despite multiple decisions required for gender affirming therapies, only one patient decision aid has been developed for transmasculine genital reconstruction. Further research is required to develop patient decision aids for the multiple decision points along the gender affirming journey.
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BACKGROUND: Few studies have examined the best way to convey the probability of serious events occurring in the future (i.e., risk of stroke or death) to persons with low numeracy or graph literacy proficiency. To address this gap, we developed and user-tested a bar graph and compared it to icon arrays to assess its impact on understanding and preference for viewing risk information. OBJECTIVES: To determine the: (i) formats' impact on participants' understanding of risk information; (ii) formats' impact on understanding and format preference across numeracy and graph literacy subgroups; (iii) rationale supporting participants' preference for each graphical display format. METHODS: An online sample (evenly made up of participants with high and low objective numeracy and graph literacy) was randomized to view either the icon array or the bar graph. Each format conveyed the risk of major stroke and death five years after choosing surgery, a stent, or medication to treat carotid artery stenosis. Participants answered questions to assess their understanding of the risk information. Lastly, both formats were presented in parallel, and participants were asked to identify their preferred format to view risk information and explain their preference. RESULTS: Of the 407 participants, 197 were assigned the icon array and 210 the bar graph. Understanding of risk information and format preference did not differ significantly between the two trial arms, irrespective of numeracy and graph literacy proficiency. High numeracy and graph literacy proficiency was associated with high understanding (p<0.01) and a preference for the bar graph (p = 0.01). CONCLUSION: We found no evidence to demonstrate the superiority of one format over another on understanding. The majority of participants preferred viewing the risk information using the bar graph format.
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Comprensión , Presentación de Datos/normas , Educación en Salud/métodos , Adulto , Presentación de Datos/efectos adversos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Conducta de Reducción del RiesgoRESUMEN
BACKGROUND: During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. METHODS: The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. RESULTS: 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. CONCLUSIONS: PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.
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COVID-19 , Barreras de Comunicación , Comportamiento del Consumidor/estadística & datos numéricos , Fibrosis Quística , Transmisión de Enfermedad Infecciosa/prevención & control , Telemedicina , Adulto , COVID-19/epidemiología , COVID-19/prevención & control , Niño , Fibrosis Quística/epidemiología , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Salud de la Familia , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Humanos , Modelos Organizacionales , Participación del Paciente/métodos , Participación del Paciente/psicología , Pediatría/métodos , Pediatría/tendencias , Mejoramiento de la Calidad , Calidad de la Atención de Salud/tendencias , SARS-CoV-2 , Telemedicina/métodos , Telemedicina/organización & administración , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
BACKGROUND: Cystic fibrosis (CF) care programs in the United States rapidly adopted telehealth during the COVID-19 pandemic. Understanding factors that promote or impede telehealth will inform planning for future telehealth-enabled care models. METHODS: Adult, pediatric, and affiliate CF care programs in the United States (n = 287) were surveyed twice eight months apart in 2020-2021 about telehealth use. Programs were asked to describe barriers to and promoters of telehealth. RESULTS: Ninety-seven percent of programs provided telehealth services. In the first CF Care Program State of Care Survey (SoC1), programs estimated that 57% of patients exclusively received in-person care, 36% of patients received telehealth by phone/computer with video, and 8% of patients received telephone-only care. In the second CF Care Program State of Care Survey (SoC2), programs estimated that 80% of visits were in-person and 15% were via audio and video telehealth. Pediatric programs (21%) were less likely than adult (37%) or affiliate (41%) programs to recommend telehealth (p = 0.007). All programs ranked lack of internet access as the highest barrier to patient engagement with telehealth. Promoters of telehealth were increased accessibility and avoidance of infection transmission. Top ranked changes to improve telehealth were expanded provision of remote monitoring devices and technology access. Similar proportions of program types anticipated institutional telehealth expansion. CONCLUSION: During the COVID-19 pandemic, CF programs in the United States identified factors to improve future care delivery via telehealth. Targeting specific barriers and promoters will improve the use and quality of telehealth throughout the care center network.
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COVID-19 , Barreras de Comunicación , Fibrosis Quística , Transmisión de Enfermedad Infecciosa/prevención & control , Accesibilidad a los Servicios de Salud , Participación del Paciente , Telemedicina , Adulto , COVID-19/epidemiología , COVID-19/prevención & control , Niño , Fibrosis Quística/epidemiología , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Femenino , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Humanos , Acceso a Internet , Masculino , Evaluación de Necesidades , Participación del Paciente/métodos , Participación del Paciente/psicología , Satisfacción del Paciente/estadística & datos numéricos , Mejoramiento de la Calidad , SARS-CoV-2 , Telemedicina/métodos , Telemedicina/organización & administración , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
BACKGROUND: The COVID-19 pandemic forced cystic fibrosis (CF) care programs to rapidly shift from in-person care delivery to telehealth. Our objective was to provide a qualitative exploration of facilitators and barriers to: 1) implementing high-quality telehealth and 2) navigating reimbursement for telehealth services. METHODS: We used data from the 2020 State of Care CF Program Survey (n=286 U.S. care programs) administered in August-September to identify two cohorts of programs, with variation in telehealth quality (n=12 programs) and reimbursement (n=8 programs). We conducted focus groups and semi-structured interviews with CF program directors and coordinators in December 2020, approximately 9 months from onset of the pandemic. We used the Consolidated Framework for Implementation Research to identify facilitators and barriers of implementation, and inductive thematic analysis to identify facilitators and barriers of reimbursement. RESULTS: Factors differentiating programs with greater and lower perceived telehealth quality included telehealth characteristics (perceived advantage over in-person care, cost, platform quality); external influences (needs and resources of those served by the CF program), characteristics of the CF program (compatibility with workflows, relative priority, available resources); characteristics of team members (individual stage of change), and processes for implementation (engaging patients and teams). Reimbursement barriers included documentation to optimize billing; reimbursement of multi-disciplinary team members, remote monitoring, and telephone-only telehealth; and lower volume of patients. CONCLUSIONS: A number of factors are associated with successful implementation and reimbursement of telehealth. Future efforts should provide guidance and incentives that support telehealth delivery and infrastructure, share best practices across CF programs, and remove barriers.
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COVID-19 , Barreras de Comunicación , Fibrosis Quística , Transmisión de Enfermedad Infecciosa/prevención & control , Accesibilidad a los Servicios de Salud , Participación del Paciente , Telemedicina , Adulto , Actitud del Personal de Salud , COVID-19/epidemiología , COVID-19/prevención & control , Niño , Fibrosis Quística/epidemiología , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Humanos , Evaluación de Necesidades , Participación del Paciente/métodos , Participación del Paciente/psicología , Investigación Cualitativa , Mejoramiento de la Calidad , Mecanismo de Reembolso , SARS-CoV-2 , Telemedicina/economía , Telemedicina/métodos , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
BACKGROUND: Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. METHODS: We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). RESULTS: A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p<.01). Telehealth use did not differ by health insurance and was similarly offered independent of financial status. Compared to PwCF who denied financial constraints, those who reported financial difficulties found telehealth more difficult to use (p=.018) and were less likely to think that their concerns (p=.010) or issues that mattered most to them (p=.020) were addressed during telehealth. Programs perceived lack of technology, language barriers, and home conditions as barriers to telehealth in vulnerable populations. CONCLUSION: PFSoC and SoC1 identified differences in telehealth use and care perceptions by ethnicity, race, and socioeconomic characteristics. Further studies are needed to understand how telehealth can change access to CF care in diverse subpopulations.
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COVID-19 , Barreras de Comunicación , Fibrosis Quística , Salud de las Minorías , Telemedicina , COVID-19/epidemiología , COVID-19/prevención & control , Control de Enfermedades Transmisibles/métodos , Fibrosis Quística/economía , Fibrosis Quística/etnología , Fibrosis Quística/psicología , Fibrosis Quística/terapia , Estrés Financiero/etnología , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/tendencias , Disparidades en Atención de Salud/etnología , Disparidades en Atención de Salud/normas , Humanos , Salud de las Minorías/etnología , Salud de las Minorías/normas , Salud de las Minorías/estadística & datos numéricos , Evaluación de Necesidades , Innovación Organizacional , SARS-CoV-2 , Factores Socioeconómicos , Telemedicina/organización & administración , Telemedicina/normas , Estados Unidos/epidemiología , Poblaciones Vulnerables/estadística & datos numéricosRESUMEN
BACKGROUND: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. METHODS: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. RESULTS: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. CONCLUSIONS: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.
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COVID-19 , Fibrosis Quística , Equipos y Suministros/provisión & distribución , Servicios de Atención de Salud a Domicilio , Monitoreo Fisiológico/métodos , Espirometría , Adulto , COVID-19/epidemiología , COVID-19/prevención & control , Niño , Fibrosis Quística/diagnóstico , Fibrosis Quística/epidemiología , Fibrosis Quística/terapia , Atención a la Salud/organización & administración , Atención a la Salud/tendencias , Accesibilidad a los Servicios de Salud/organización & administración , Accesibilidad a los Servicios de Salud/normas , Servicios de Atención de Salud a Domicilio/organización & administración , Servicios de Atención de Salud a Domicilio/normas , Humanos , Modelos Organizacionales , Evaluación de Necesidades , Oximetría/instrumentación , Oximetría/métodos , Mejoramiento de la Calidad , SARS-CoV-2 , Espirometría/instrumentación , Espirometría/métodos , Telemedicina/métodos , Telemedicina/normas , Estados Unidos/epidemiologíaRESUMEN
CONTEXT: No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. OBJECTIVES: The objective of the study was to develop the consideRATE questions. METHODS: This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). RESULTS: Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1-5). CONCLUSION: Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.
Asunto(s)
Familia , Diseño Centrado en el Usuario , Cuidadores , Comunicación , HumanosRESUMEN
BACKGROUND: Conversation aids can facilitate shared decision-making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversation aids. We examined differences in opinions between the two conversation aids and across socioeconomic strata. METHODS: We nested this study within a randomized controlled trial that demonstrated the effectiveness of two early-stage breast cancer surgery conversation aids, one text-based and one picture-based. These conversation aids facilitated more shared decision-making and improved the decision process, among other outcomes, across four health systems with socioeconomically diverse patient populations. We conducted semi-structured interviews with a purposive sample of patient participants across conversation aid assignment and socioeconomic status (SES) and collected observations and field notes. We interviewed trial surgeons and other stakeholders. Two independent coders conducted framework analysis using the NOrmalization MeAsure Development through Normalization Process Theory. We also conducted an inductive analysis. We conducted additional sub-analyses based on conversation aid assignment and patient SES. RESULTS: We conducted 73 semi-structured interviews with 43 patients, 16 surgeons, and 14 stakeholders like nurses, cancer center directors, and electronic health record (EHR) experts. Patients and surgeons felt the conversation aids should be used in breast cancer care in the future and were open to various methods of giving and receiving the conversation aid (EHR, email, patient portal, before consultation). Patients of higher SES were more likely to note the conversation aids influenced their treatment discussion, while patients of lower SES noted more influence on their decision-making. Intervention surgeons reported using the conversation aids did not lengthen their typical consultation time. Most intervention surgeons felt using the conversation aids enhanced their usual care after using it a few times, and most patients felt it appeared part of their normal routine. CONCLUSIONS: Key factors that will guide the future sustained implementation of the conversation aids include adapting to existing clinical workflows, flexibility of use, patient characteristics, and communication preferences. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03136367 , registered on May 2, 2017.
Asunto(s)
Neoplasias de la Mama , Neoplasias de la Mama/terapia , Comunicación , Toma de Decisiones , Toma de Decisiones Conjunta , Técnicas de Apoyo para la Decisión , Femenino , Humanos , Participación del PacienteRESUMEN
BACKGROUND: True allergy to penicillin is rare, despite the high frequency with which it is reported. While most patients reporting penicillin allergy are not prone to anaphylaxis, it is not currently known what percentage of these patients will tolerate dose challenges of penicillin-based antibiotics. This review aims to determine the rate of tolerance in patients reporting penicillin allergy when challenged with penicillin-based antibiotics. METHODS: We searched MedLine, Embase, and Cochrane Library for publications with English language translations between the years 2000 and 2017. We included randomized controlled trials, quasi-experimental, and observational studies of participants reporting penicillin allergy who received at least one systemic dose of a penicillin in the form of a drug challenge. At least 2 independent reviewers extracted data from included studies and assessed the quality of each included study. To generate primary outcome data, we calculated a summary estimate rate of penicillin tolerance from a pooled proportion of participants receiving penicillin with no adverse effects. RESULTS: Initial literature search yielded 2945 studies, of which 23 studies were ultimately included in our review; 5056 study participants with reported history of penicillin allergy were challenged with a penicillin. After weighting for study sample size, a pooled average of 94.4% (95% confidence interval, 93.7%-95%) of participants tolerated the dose challenge without any adverse reaction. CONCLUSION: Misrepresented penicillin allergy drives unnecessary use of alternative antibiotics, which may be less effective, more toxic, and more expensive than using penicillin. In addressing the problem of penicillin allergy over-diagnosis, evaluation should go beyond risk for type 1 hypersensitivity. Our data suggest that 94.4% of 5056 participants with reported penicillin allergy determined to be clinically appropriate for allergy evaluation tolerated repeat administration of penicillin-based antibiotics without any adverse reactions. This review generates meaningful information useful to clinical predictive analytics, in evaluating and managing patients with a reported history of penicillin allergy.