Routine Implementation of Patient-Reported Outcomes Assessment Into Thoracic Surgery Practice.

BACKGROUND: Patient-reported outcomes (PROs) assessment is a necessary component of surgical outcome assessment and patient care. This study examined the success of routine PROs assessment in an academic-based thoracic surgery practice. METHODS: PROs, measuring pain intensity, physical function, and dyspnea, were routinely obtained using the National Institutes of Health-sponsored Patient-Reported Outcomes Measurement Information System (PROMIS) on all thoracic surgery patients beginning in April 2018 through January 2021. Questionnaires were administered electronically through a web-based platform at home or during the office visit. Completion rates and barriers were measured. RESULTS: A total of 9725 thoracic surgery office visits occurred during this time frame. PROs data were obtained in 6899 visits from a total of 3551 patients. The mean number of questions answered per survey was 22.4 ± 2.2. Overall questionnaire completion rate was 65.7%. A significant decline in survey completion was noted in April 2020, after which adjustments were made to allow for questionnaire completion through a mobile health platform. Overall monthly questionnaire completion rates ranged from 20% (April 2020) to 90% (October 2018). Mean T scores were dyspnea, 41.6 ± 12.3; physical function, 42.7 ± 10.5; and pain intensity, 52.8 ± 10.3. CONCLUSIONS: PROs can be assessed effectively in a thoracic surgery clinic setting, with minimal disruption of clinical activities. Future efforts should focus on facilitating PROs collection from disadvantaged patient populations and scaling implementation across programs.

Referral and Evaluation for Kidney Transplantation Following Implementation of the 2014 National Kidney Allocation System.

RATIONALE & OBJECTIVE: The national kidney allocation system (KAS) implemented in December 2014 in the United States redefined the start of waiting time from the time of waitlisting to the time of kidney failure. Waitlisting has declined post-KAS, but it is unknown if this is due to transplant center practices or changes in dialysis facility referral and evaluation. The purpose of this study was to assess the impact of the 2014 KAS policy change on referral and evaluation for transplantation among a population of incident and prevalent patients with kidney failure. STUDY DESIGN: Cohort study. SETTING & PARTICIPANTS: 37,676 incident (2012-2016) patients in Georgia, North Carolina, and South Carolina identified within the US Renal Data System at 9 transplant centers and followed through December 2017. A prevalent population of 6,079 patients from the same centers receiving maintenance dialysis in 2012 but not referred for transplantation in 2012. EXPOSURE: KAS era (pre-KAS vs post-KAS). OUTCOME: Referral for transplantation, start of transplant evaluation, and waitlisting. ANALYTICAL APPROACH: Multivariable time-dependent Cox models for the incident and prevalent population. RESULTS: Among incident patients, KAS was associated with increased referrals (adjusted HR, 1.16 [95% CI, 1.12-1.20]) and evaluation starts among those referred (adjusted HR, 1.16 [95% CI, 1.10-1.21]), decreased overall waitlisting (adjusted HR, 0.70 [95% CI, 0.65-0.76]), and lower rates of active waitlisting among those evaluated compared to the pre-KAS era (adjusted HR, 0.81 [95% CI, 0.74-0.90]). Among the prevalent population, KAS was associated with increases in overall waitlisting (adjusted HR, 1.74 [95% CI, 1.15-2.63]) and active waitlisting among those evaluated (adjusted HR, 2.01 [95% CI, 1.16-3.49]), but had no significant impact on referral or evaluation starts among those referred. LIMITATIONS: Limited to 3 states, residual confounding. CONCLUSIONS: In the southeastern United States, the impact of KAS on steps to transplantation was different among incident and prevalent patients with kidney failure. Dialysis facilities referred more incident patients and transplant centers evaluated more incident patients after implementation of KAS, but fewer evaluated patients were placed onto the waitlist. Changes in dialysis facility and transplant center behaviors after KAS implementation may have influenced the observed changes in access to transplantation.

Non-medical barriers in access to early steps of kidney transplantation in the United States - A scoping review.

BACKGROUND: In the United States (US), barriers in access to later steps in the kidney transplantation process (i.e. waitlisting) have been well documented. Barriers in access to earlier steps (i.e. referral and evaluation) are less well described due to the lack of national surveillance data. In this review, we summarize the available literature on non-medical barriers in access to kidney transplant referral and evaluation. METHODS: Following PRISMA guidelines, we conducted a scoping review of the literature through June 3, 2021. We included all studies (quantitative and qualitative) reporting on barriers to kidney transplant referral and evaluation in the US published from 1990 onwards in English and among adult end-stage kidney disease (ESKD) patients (PROSPERO registration number: CRD42014015027). We narratively synthesized results across studies. RESULTS: We retrieved information from 33 studies published from 1990 to 2021 (reporting data between 1990 and 2018). Most studies (n = 28, 85%) described barriers among patient populations, three (9%) among provider populations, and two (6%) included both patients and providers. Key barriers were identified across multiple levels and included patient- (e.g. demographic, socioeconomic, sociocultural, and knowledge), provider- (e.g. miscommunication, staff availability, provider perceptions and attitudes), and system- (e.g. geography, distance to care, healthcare logistics) level factors. CONCLUSIONS: A multi-pronged approach (e.g. targeted and systemwide interventions, and policy change) implemented at multiple levels of the healthcare system will be necessary to reduce identified barriers in access to early kidney transplant steps. Collection of national surveillance data on these early kidney transplant steps is also needed to enhance our understanding of barriers to referral and evaluation.

Nonmedical barriers to early steps in kidney transplantation among underrepresented groups in the United States.

PURPOSE OF REVIEW: Despite numerous targeted interventions and policy reforms, underrepresented minorities and patients with low socioeconomic status (SES) continue to have unequal access to kidney transplant. In this review, we summarize the most recent evidence on barriers to early kidney transplant steps (i.e. referral and evaluation) among underrepresented racial and ethnic minorities and low SES groups in the United States. RECENT FINDINGS: This review highlights the interconnectedness of several patient-level (e.g. medical mistrust, transplant knowledge, access to care), provider-level (e.g. dialysis profit status, patient--provider communication; staff accessibility), and system-level (e.g. center-specific criteria, healthcare logistics, neighborhood poverty, healthcare logistics) factors associated with lower rates of referral and evaluation among underrepresented minorities and low SES groups, and the influence of systemic racism operating at all levels. SUMMARY: Collection of national surveillance data on early transplant steps, as well as routinely captured data on upstream social determinants of health, including the measurement of racism rather than race, is necessary to enhance our understanding of barriers to referral and evaluation. A multipronged approach (e.g. targeted and systemwide interventions, and policy change) implemented at multiple levels of the healthcare system will be necessary to reduce disparities in early transplant steps.

Efficacy and safety of intravenous immunoglobulin with rituximab versus rituximab alone in childhood-onset steroid-dependent and frequently relapsing nephrotic syndrome: protocol for a multicentre randomised controlled trial.

INTRODUCTION: Guidelines for the treatment of steroid-dependent nephrotic syndrome (SDNS) and frequently relapsing nephrotic syndrome (FRNS) are lacking. Given the substantial impact of SDNS/FRNS on quality of life, strategies aiming to provide long-term remission while minimising treatment side effects are needed. Several studies confirm that rituximab is effective in preventing early relapses in SDNS/FRNS; however, the long-term relapse rate remains high (~70% at 2 years). This trial will assess the association of intravenous immunoglobulins (IVIgs) to rituximab in patients with SDNS/FRNS and inform clinicians on whether IVIg's immunomodulatory properties can alter the course of the disease and reduce the use of immunosuppressive drugs and their side effects. METHODS AND ANALYSIS: We conduct an open-label multicentre, randomised, parallel group in a 1:1 ratio, controlled, superiority trial to assess the safety and efficacy of a single infusion of rituximab followed by IVIg compared with rituximab alone in childhood-onset FRNS/SDNS. The primary outcome is the occurrence of first relapse within 24 months. Patients are allocated to receive either rituximab alone (375 mg/m²) or rituximab followed by IVIg, which includes an initial Ig dose of 2 g/kg, followed by 1.5 g/kg injections once a month for the following 5 months (maximum dose: 100 g). ETHICS AND DISSEMINATION: The study has been approved by the ethics committee (Comité de Protection des Personnes) of Ouest I and authorised by the French drug regulatory agency (Agence Nationale de Sécurité du Médicament et des Produits de Santé). Results of the primary study and the secondary aims will be disseminated through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT03560011.