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BACKGROUND: Diverticular disease is a common gastrointestinal diagnosis with over 2.7 million clinic visits yearly. National guidelines from the American Society of Colon and Rectal Surgeons state that "the decision to recommend elective sigmoid colectomy after recovery from uncomplicated acute diverticulitis should be individualized." However, tools to individualize this decision are lacking. OBJECTIVE: This study aimed to develop an online educational decision aid (DA) to facilitate effective surgeon and patient communication about treatment options for recurrent left-sided diverticulitis. METHODS: We used a modified design sprint methodology to create a prototype DA. We engaged a multidisciplinary team and adapted elements from the Ottawa Personal Decision Guide. We then iteratively refined the prototype by conducting a mixed methods assessment of content and usability testing, involving cognitive interviews with patients and surgeons. The findings informed the refinement of the DA. Further testing included an in-clinic feasibility review. RESULTS: Over a 4-day in-person rapid design sprint, including patients, surgeons, and health communication experts, we developed a prototype of a diverticulitis DA, comprising an interactive website and handout with 3 discrete sections. The first section contains education about diverticulitis and treatment options. The second section clarifies the potential risks and benefits of both clinical treatment options (medical management vs colectomy). The third section invites patients to participate in a value clarification exercise. After navigating the DA, the patient prints a synopsis that they bring to their clinic appointment, which serves as a guide for shared decision-making. CONCLUSIONS: Design sprint methodology, emphasizing stakeholder co-design and complemented by extensive user testing, is an effective and efficient strategy to create a DA for patients living with recurrent diverticulitis facing critical treatment decisions.
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Colectomía , Técnicas de Apoyo para la Decisión , Humanos , Colectomía/métodos , Recurrencia , Diverticulitis/cirugía , Femenino , Masculino , Persona de Mediana Edad , Adulto , Educación del Paciente como Asunto/métodos , AncianoRESUMEN
Introduction: Improving public awareness about the opportunity to become a vascularized composite allograft (VCA) donor is crucial to increasing access to organs. Prior research identified a need for comprehensive and comprehensible public education materials. A 2-round Delphi panel was conducted to garner US expert consensus on the topics and language to include in public education materials via an organ procurement organization-hosted website. Methods: The round 1 survey assessed the importance of educational topics and statements (n = 19) using 5-point Likert scales. The round 2 survey asked experts to rate new and repeated educational topics (n = 27). Open-ended comment boxes elicited experts' feedback and language revisions for educational statements. Responses were analyzed using descriptive statistics and rapid qualitative analysis. Findings: Eighteen experts responded to the round 1 survey and 15 to round 2. After round 2, 20 topics had mean (M) importance greater than neutral (M > 3.00) and were retained in the educational materials. The 5 most important topics by mean Likert ratings were: consent process for donation (M = 4.73), potential recipients (M = 4.73), most common vascularized composite organs transplanted (M = 4.47), purpose (M = 4.47), and definition (M = 4.47). Seven themes emerged from experts' open-ended comments about the importance and language of educational statements. Conclusions: Delphi panel findings identified expert-endorsed topics and educational statements for public education about vascularized composite organ donation via an educational website. Future research should assess the website's impact on public knowledge of VCA donation.
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OBJECTIVE: To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design. METHOD: TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale). RESULTS: Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores. CONCLUSIONS: We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.
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Toma de Decisiones , Insuficiencia Renal Crónica , Humanos , Anciano , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/complicaciones , Masculino , Femenino , Prioridad del Paciente , Participación del Paciente , Anciano de 80 o más AñosRESUMEN
In a workshop sponsored by the U.S. National Heart, Lung, and Blood Institute, experts identified current knowledge gaps and research opportunities in the scientific, conceptual, and ethical understanding of organ donation after the circulatory determination of death and its technologies. To minimize organ injury from warm ischemia and produce better recipient outcomes, innovative techniques to perfuse and oxygenate organs postmortem in situ, such as thoracoabdominal normothermic regional perfusion, are being implemented in several medical centers in the US and elsewhere. These technologies have improved organ outcomes but have raised ethical and legal questions. Re-establishing donor circulation postmortem can be viewed as invalidating the condition of permanent cessation of circulation on which the earlier death determination was made and clamping arch vessels to exclude brain circulation can be viewed as inducing brain death. Alternatively, TA-NRP can be viewed as localized in-situ organ perfusion, not whole-body resuscitation, that does not invalidate death determination. Further scientific, conceptual, and ethical studies, such as those identified in this workshop, can inform and help resolve controversies raised by this practice.
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Muerte , Obtención de Tejidos y Órganos , Humanos , Obtención de Tejidos y Órganos/métodos , Obtención de Tejidos y Órganos/ética , Estados Unidos , National Heart, Lung, and Blood Institute (U.S.) , Trasplante de Pulmón , Donantes de Tejidos , Preservación de Órganos/métodos , Trasplante de CorazónRESUMEN
Clinical chatbots are increasingly used to help integrate genetic testing into clinical contexts, but no chatbot exists for Apolipoprotein L1 (APOL1) genetic testing of living kidney donor (LKD) candidates of African ancestry. Our study aimed to culturally adapt and assess perceptions of the Gia® chatbot to help integrate APOL1 testing into LKD evaluation. Ten focus groups and post-focus group surveys were conducted with 54 LKDs, community members, and kidney transplant recipients of African ancestry. Data were analyzed through thematic analysis and descriptive statistics. Key themes about making Gia culturally targeted included ensuring: (1) transparency by providing Black LKDs' testimonials, explaining patient privacy and confidentiality protections, and explaining how genetic testing can help LKD evaluation; (2) content is informative by educating Black LKDs about APOL1 testing instead of aiming to convince them to undergo testing, presenting statistics, and describing how genetic discrimination is legally prevented; and (3) content avoids stigma about living donation in the Black community. Most agreed Gia was neutral and unbiased (82%), trustworthy (82%), and words, phrases, and expressions were familiar to the intended audience (85%). Our culturally adapted APOL1 Gia chatbot was well regarded. Future research should assess how this chatbot could supplement provider discussion prior to genetic testing to scale APOL1 counseling and testing for LKD candidate clinical evaluation.
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Background: Hispanic patients receive disproportionately fewer kidney transplants (KT) than non-Hispanic White (NHW) patients. In this observational study, we evaluated disparities in completing evaluation steps to KT among Hispanic patients. Methods: Using medical records of Hispanic and NHW patients initiating evaluation at 4 transplant centers from January 2011 to March 2020, we performed sequential Cox models to compare Hispanic versus NHW patients reaching each step of the evaluation process until receiving a KT. Results: Among all 5197 patients (Hispanic n = 2473; NHW n = 2724) initiating evaluation, Hispanic patients had 8% lower risk to be approved by the kidney pancreas (KP) committee than NHW patients (adjusted hazard ratio [aHR], 0.92; 95% confidence intervals (CI), 0.86-0.98; P = 0.015). Among 3492 patients approved by the KP committee, Hispanic patients had 13% lower risk to be waitlisted than NHW patients (aHR, 0.87; 95% CI, 0.81-0.94; P = 0.004). Among 3382 patients who were waitlisted, Hispanic patients had 11% lower risk than NHW patients to receive KT (aHR, 0.89; 95% CI, 0.81-0.97; P = 0.011). Among all patients initiating evaluation, Hispanic patients had a 16% lower risk than NHW patients to reach KT (aHR, 0.84; 95% CI, 0.76-0.92; P = 0.0002). Conclusions: Our study found that disproportionately fewer Hispanic patients were approved by the KP committee, were waitlisted, and received a KT, particularly a living donor kidney transplant, than NHW patients. Closer oversight of the evaluation process may help patients overcome challenges in access to KT.
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This Department of Social Work Services (the Department) is one of the largest hospital social work departments in the country, with almost 600 staff, in the largest of eight hospitals and one medical school of a major health system. The Department's senior directors (three current and one former) share its innovative and effective collective leadership model that was initially developed in response to a confluence of unprecedented complex events stemming from the Covid-19 pandemic. The experiences of these co-leaders, an evaluation of the model, future internal considerations as its applicability to other health care settings will be discussed.
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Liderazgo , Servicio de Asistencia Social en Hospital , Humanos , Pandemias , Hospitales Urbanos , Servicio SocialRESUMEN
BACKGROUND: Interventions to improve racial equity in access to living donor kidney transplants (LDKT) have focused primarily on patients, ignoring the contributions of clinicians, transplant centers, and health system factors. Obtaining access to LDKT is a complex, multi-step process involving patients, their families, clinicians, and health system functions. An implementation science framework can help elucidate multi-level barriers to achieving racial equity in LDKT and guide the implementation of interventions targeted at all levels. METHODS: We adopted the Pragmatic Robust Implementation and Sustainability Model (PRISM), an implementation science framework for racial equity in LDKT. The purpose was to provide a guide for assessment, inform intervention design, and support planning for the implementation of interventions. RESULTS: We applied 4 main PRISM domains to racial equity in LDKT: Organizational Characteristics, Program Components, External Environment, and Patient Characteristics. We specified elements within each domain that consider perspectives of the health system, transplant center, clinical staff, and patients. CONCLUSION: The applied PRISM framework provides a foundation for the examination of multi-level influences across the entirety of LDKT care. Researchers, quality improvement staff, and clinicians can use the applied PRISM framework to guide the assessment of inequities, support collaborative intervention development, monitor intervention implementation, and inform resource allocation to improve equity in access to LDKT.
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Equidad en Salud , Trasplante de Riñón , Humanos , Donadores Vivos , Ciencia de la Implementación , Grupos RacialesRESUMEN
On June 3, 2023, the American Society of Transplant Surgeons convened a meeting in San Diego, California to (1) develop a consensus statement with supporting data on the ethical tenets of thoracoabdominal normothermic regional perfusion (NRP) and abdominal NRP; (2) provide guidelines for the standards of practice that should govern thoracoabdominal NRP and abdominal NRP; and (3) develop and implement a central database for the collection of NRP donor and recipient data in the United States. National and international leaders in the fields of neuroscience, transplantation, critical care, NRP, Organ Procurement Organizations, transplant centers, and donor families participated. The conference was designed to focus on the controversial issues of neurological flow and function in donation after circulatory death donors during NRP and propose technical standards necessary to ensure that this procedure is performed safely and effectively. This article discusses major topics and conclusions addressed at the meeting.
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Cirujanos , Donantes de Tejidos , Humanos , Perfusión , Consenso , Cuidados CríticosRESUMEN
RATIONALE & OBJECTIVE: Few older adults with kidney failure engage in shared decision making (SDM) for kidney replacement therapy. The lack of instruments to assess SDM-relevant knowledge domains may contribute to this. We assessed the reliability and validity of a new instrument, the Rating of CKD Knowledge Older Adults (Know-CKD). STUDY DESIGN: Multistage process, including a stakeholder-engaged development phase, pilot testing, and validation of a knowledge instrument using a cross-sectional survey of older adults with CKD. SETTING & PARTICIPANTS: 363 patients aged 70+years with nondialysis advanced chronic kidney disease (CKD) (estimated glomerular filtration rate [eGFR]<30mL/min/1.73m2) in Boston, Chicago, Portland, ME, and San Diego from June 2018 and January 2020. EXPOSURE: Educational level, higher literacy (Single Item Literacy Screener [SILS]) and numeracy (Subjective Numeracy Scale [SNS]), having participated in clinic-sponsored dialysis education, and self-reported "feeling informed" about options for treatment. OUTCOME: Validity and reliability of the Know-CKD instrument. ANALYTICAL APPROACH: Reliability was assessed with the Kuder-Richardson-20 coefficient. Construct validity was demonstrated by testing a priori hypotheses using t test, analysis of variance (ANOVA) tests, and linear regression analyses. RESULTS: The mean (± SD) participant age was 77.6±5.9 years, and mean eGFR was 22.7±7.2mL/min/1.73m2; 281 participants (78%) self-reported as White. The 12-item Know-CKD assessment had good reliability (Kuder-Richardson-20 reliability coefficient=0.75), and a mean score of 58.2% ± 22.3 SD. The subscales did not attain acceptable reliability. The proportion answering correctly on each item ranged from 20.1% to 91.7%. In examining construct validity, the hypothesized associations held; Know-CKD significantly associated with higher education (ß=6.98 [95% CI, 1.34-12.61], P=0.02), health literacy (ß = -12.67 [95% CI, -19.49 to-5.86], P≤0.001), numeracy per 10% higher (ß=1.85 [95% CI, 1.02-2.69], P≤0.001), and attendance at dialysis class (ß=18.28 [95% CI, 13.30-23.27], P≤0.001). These associations were also observed for the subscales except for prognosis (not associated with literacy or numeracy). LIMITATIONS: Know-CKD is only available in English and has been used only in research settings. CONCLUSIONS: For older adults facing dialysis initiation decisions, Know-CKD is a valid, reliable, and easy to administer measure of knowledge. Further research should examine the relationship of kidney disease knowledge and SDM, patient satisfaction, and clinical outcomes. PLAIN-LANGUAGE SUMMARY: The Rating of CKD Knowledge Among Older Adults (Know-CKD) study measures knowledge of chronic kidney disease (CKD) and is designed for older adults. Most existing knowledge measures for CKD focus on people of all ages and all CKD stages. This measure is useful because it will allow researchers to assess how well patient education efforts are working. Patient education is a way to help patients make decisions about their care. We describe how the measure was developed by a team of doctors, researchers, and patients, and how the measure performed among persons with advanced CKD aged 70 years and older. Know-CKD can inform efforts to improve shared decision-making research and practice for older patients with kidney disease.
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Objective: This study aims to introduce key concepts and methods that inform the design of studies that seek to quantify the causal effect of social determinants of health (SDOH) on access to and outcomes following organ transplant. Background: The causal pathways between SDOH and transplant outcomes are poorly understood. This is partially due to the unstandardized and incomplete capture of the complex interactions between patients, their neighborhood environments, the tertiary care system, and structural factors that impact access and outcomes. Designing studies to quantify the causal impact of these factors on transplant access and outcomes requires an understanding of the fundamental concepts of causal inference. Methods: We present an overview of fundamental concepts in causal inference, including the potential outcomes framework and direct acyclic graphs. We discuss how to conceptualize SDOH in a causal framework and provide applied examples to illustrate how bias is introduced. Results: There is a need for direct measures of SDOH, increased measurement of latent and mediating variables, and multi-level frameworks for research that examine health inequities across multiple health systems to generalize results. We illustrate that biases can arise due to socioeconomic status, race/ethnicity, and incongruencies in language between the patient and clinician. Conclusions: Progress towards an equitable transplant system requires establishing causal pathways between psychosocial risk factors, access, and outcomes. This is predicated on accurate and precise quantification of social risk, best facilitated by improved organization of health system data and multicenter efforts to collect and learn from it in ways relevant to specialties and service lines.
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Objective: Upper extremity vascularized composite allotransplantation is an innovative treatment option for people with upper extremity amputations. Limited patient-relevant long-term outcomes data about transplant success may impede patients' informed treatment decision-making. We assessed perceptions of what constitutes upper extremity vascularized composite allotransplantation success among individuals with upper extremity amputations. Methods: This multisite study entailed interviews and focus groups with individuals with upper extremity amputations and upper extremity vascularized composite allotransplantation candidates, participants, and recipients. We examined perceptions of transplant success and preferences for five upper extremity vascularized composite allotransplantation outcomes. Qualitative data were analyzed using thematic analysis; and quantitative data were analyzed using descriptive statistics. Results: In all, 50 individuals participated in interviews (61.7% participation rate), and 37 participated in nine focus groups (75.5% participation rate). Most were White (72%, 73%), had a mean age of 45 and 48 years, and had a unilateral amputation (84%, 59%), respectively. Participants conceptualized upper extremity vascularized composite allotransplantation success as transplant outcomes: (1) restoring function and sensation to enable new activities; (2) accepting the transplanted limb into one's identity and appearance; (3) not having transplant rejection; (4) attaining greater quality of life compared to prosthetics; and (5) ensuring benefits outweigh risks. Participants rated their most important upper extremity vascularized composite allotransplantation outcomes as follows: not having transplant rejection, not developing health complications, grasping objects, feeling touch and temperature, and accepting the upper extremity vascularized composite allotransplantation into your identity. Conclusion: Individuals with upper extremity amputations maintain several conceptions of vascularized composite allotransplantation success, spanning functional, psychosocial, clinical, and quality of life outcomes. Providers should address patients' conceptions of success to improve informed consent discussions and outcomes reporting for upper extremity vascularized composite allotransplantation.
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BACKGROUND: Latinx populations are severely underrepresented among organ donors compared with the non-Hispanic White population. The Promotoras de Donación e-learning module was developed to train Latinx lay health educators (ie, promotoras) to discuss deceased organ donation and promote donor designation within their communities. OBJECTIVE: This paper described the results of 2 studies designed to assess the direct and indirect effects of the module on promotoras' and mature Latinas' organ donation and donor designation knowledge, attitudes, and behaviors. METHODS: In partnership with 4 community-based promotoras organizations, we designed 2 nonrandomized, quasiexperimental pragmatic studies to evaluate the Promotoras de Donación e-learning module, with participating promotoras and mature Latinas serving as their own controls. Brief surveys were administered to participating promotoras before and after module completion to assess changes in organ donation knowledge and support and communication confidence (study 1). Promotoras participating in the first study were asked to hold at least 2 group conversations about organ donation and donor designation with mature Latinas (study 2); paper-pencil surveys were completed by all participants before and after the group conversations. Descriptive statistics, means and SDs, and counts and percentages were used as appropriate to categorize the samples. Paired sample 2-tailed t test was used to assess changes in knowledge of and support for organ donation and confidence in discussing donation and promoting donor designation from pre- to posttest. RESULTS: Overall, 40 promotoras completed this module (study 1). Increases in organ donation knowledge (mean 6.0, SD 1.9 to mean 6.2, SD 2.9) and support (mean 3.4, SD 0.9 to mean 3.6, SD 0.9) were observed from pre- to posttest; however, these changes did not reach statistical significance. A statistically significant increase in communication confidence was found (mean 692.1, SD 232.4 to mean 852.3, SD 139.7; P=.01). The module was well received, with most participants deeming it well organized, presenting new information, and providing realistic and helpful portrayals of donation conversations. A total of 52 group discussions with 375 attendees were led by 25 promotoras (study 2). The trained promotora-led group discussions about organ donation resulted in increased support for organ donation in promotoras and mature Latinas from pre- to posttest. Knowledge of the steps to become an organ donor and belief that the process is easy to perform increased in mature Latinas from pre- to posttest by 30.7% and 15.2%, respectively. In total, 5.6% (21/375) of attendees submitted completed organ donation registration forms. CONCLUSIONS: This evaluation provides preliminary support for the module's direct and indirect effects on organ donation knowledge, attitudes, and behaviors. The need for additional modifications to and future evaluations of the module are discussed.