Autonomy-based criticisms of the patient preference predictor

The patient preference predictor (PPP) is a proposed computer-based algorithm that would predict the treatment preferences of decisionally incapacitated patients. Incorporation of a PPP into the decision-making process has the potential to improve implementation of the substituted judgement standard by providing more accurate predictions of patients’ treatment preferences than reliance on surrogates alone. Yet, critics argue that methods for making treatment decisions for incapacitated patients should be judged on a number of factors beyond simply providing them with the treatments they would have chosen for themselves. These factors include the extent to which the decision-making process recognises patients’ freedom to choose and relies on evidence the patient themselves would take into account when making treatment decisions. These critics conclude that use of a PPP should be rejected on the grounds that it is inconsistent with these factors, especially as they relate to proper respect for patient autonomy. In this paper, we review and evaluate these criticisms. We argue that they do not provide reason to reject use of a PPP, thus supporting efforts to develop a full-scale PPP and to evaluate it in practice.

Composite endpoint for ALS clinical trials based on patient preference: Patient-Ranked Order of Function (PROOF)

BackgroundPatients with amyotrophic lateral sclerosis (ALS) show considerable variation in symptoms. Treatments targeting an overall improvement in symptomatology may not address what the majority of patients consider to be most important. Here, we propose a composite endpoint for ALS clinical trials that weighs the improvement in symptoms compared with what the patient population actually wants.MethodsAn online questionnaire was sent out to a population-based registry in The Netherlands. Patients with ALS were asked to score functional domains with a validated self-reported questionnaire, and rank the order of importance of each domain. This information was used to estimate variability in patient preferences and to develop the Patient-Ranked Order of Function (PROOF) endpoint.ResultsThere was extensive variability in patient preferences among the 433 responders. The majority of the patients (62.1%) preferred to prioritise certain symptoms over others when evaluating treatments. The PROOF endpoint was established by comparing each patient in the treatment arm to each patient in the placebo arm, based on their preferred order of functional domains. PROOF averages all pairwise comparisons, and reflects the probability that a patient receiving treatment has a better outcome on domains that are most important to them, compared with a patient receiving placebo. By means of simulation we illustrate how incorporating patient preference may upgrade or downgrade trial results.ConclusionsThe PROOF endpoint provides a balanced patient-focused analysis of the improvement in function and may help to refine the risk–benefit assessment of new treatments for ALS.

Patient Preference for Optical Coherence Tomography versus Punch Biopsy for Diagnosis of Basal Cell Carcinoma: A Labelled Discrete Choice Experiment

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Telemedicine for neurosurgery consultations at a Pituitary Center of Excellence: Patient preference and willingness to proceed with surgery

Objective The purpose of this study was to evaluate pituitary tumor patient satisfaction with telemedicine, patient preference for telemedicine, potential socioeconomic benefit of telemedicine, and patients’ willingness to proceed with surgery based on a telemedicine visit alone. Methods 134 patients who had pituitary surgery and a telemedicine visit during the COVID-19 pandemic (4/23/20-3/4/21) were called to participate in a 13-part questionnaire. Chi-square, ANOVA, and Wilcoxon Rank Sum were used to determine significance. Result Of 134 patients contacted, 90 responded (67%). 95% were “satisfied” or “very satisfied” with their telemedicine visit, with 62% stating their visit was “the same” or “better” than previous in-person appointments. 82% of patients rated their telemedicine visit as “easy” or “very easy.” On average, patients saved 150 minutes by using telemedicine compared to patient reported in-person visit times. 77% of patients reported the need to take off work for in-person visits, compared to just 12% when using telemedicine. 49% of patients preferred in-person visits, 34% preferred telemedicine, and 17% had no preference. 50% of patients said they would feel comfortable proceeding with surgery based on a telemedicine visit alone. Patients with both initial evaluation and follow-up conducted via telemedicine were more likely to feel comfortable proceeding with surgery based on a telemedicine visit alone compared to patients who had only follow-up telemedicine visits (p=0.051). Conclusion Many pituitary patients patients are satisfied with telemedicine visits and feel comfortable proceeding with surgery based on a telemedicine visit alone. Telemedicine is an important adjunct to increase access to care.

The Evolution of Telehealth From Pre-COVID-19 Pandemic Through A Hybrid Virtual Care Delivery Model: A Pediatric Hospital’s Journey

The COVID-19 pandemic transformed care delivery and influenced telehealth adoption by rehabilitation professionals and their patients. The purpose of this paper is to describe a pediatric health system’s telehealth services pre-pandemic and how those services were scaled during the pandemic. A secondary aim is to provide a roadmap for the operational delivery of telehealth and rehabilitation services, including transition to a hybrid care delivery model. Findings suggested that telehealth can be rapidly scaled to address patient healthcare needs for an early intervention population during a pandemic. Telehealth use during the pandemic helped ensure continuity of care and likely reduced the risk of exposure to patients and staff to the virus. Benefits included enhanced access to care, and savings in time and money for families. Interestingly, as the pandemic declined, the use of telehealth services declined due to patient preference, with many families opting to request a return to in-person care.