Joanna Paladino

Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention

Introduction Ensuring that patients receive care that is consistent with their goals and values is a critical component of high-quality care. This article describes the protocol for a cluster randomised controlled trial of a multicomponent, structured communication intervention. Methods and analysis Patients with advanced, incurable cancer and life expectancy of <12 months will participate together with their surrogate. Clinicians are enrolled and randomised either to usual care or the intervention. The Serious Illness Care Program is a multicomponent, structured communication intervention designed to identify patients, train clinicians to use a structured guide for advanced care planning discussion with patients, ‘trigger’ clinicians to have conversations, prepare patients and families for the conversation, and document outcomes of the discussion in a structured format in the electronic medical record. Clinician satisfaction with the intervention, confidence and attitudes will be assessed before and after the intervention. Self-report data will be collected from patients and surrogates approximately every 2 months up to 2 years or until the patients death; patient medical records will be examined at the close of the study. Analyses will examine the impact of the intervention on the patient receipt of goal-concordant care, and peacefulness at the end of life. Secondary outcomes include patient anxiety, depression, quality of life, therapeutic alliance, quality of communication, and quality of dying and death. Key process measures include frequency, timing and quality of documented conversations. Ethics and dissemination This study was approved by the Dana-Farber Cancer Institute Institutional Review Board. Results will be reported in peer-reviewed publications and conference presentations. Trial registration number Protocol identifier NCT01786811; Pre-results.

Algorithm-based decision support for symptom self-management among adults with Cancer: results of usability testing

BackgroundIt is essential that cancer patients understand anticipated symptoms, how to self-manage these symptoms, and when to call their clinicians. However, patients are often ill-prepared to manage symptoms at home. Clinical decision support (CDS) is a potentially innovative way to provide information to patients where and when they need it. The purpose of this project was to design and evaluate a simulated model of an algorithm-based CDS program for self-management of cancer symptoms.MethodsThis study consisted of three phases; development of computable algorithms for self-management of cancer symptoms using a modified ADAPTE process, evaluation of a simulated model of the CDS program, and identification of design objectives and lessons learned from the evaluation of patient-centered CDS. In phase 1, algorithms for pain, constipation and nausea/vomiting were developed by an expert panel. In phase 2, we conducted usability testing of a simulated symptom assessment and management intervention for self-care (SAMI-Self-Care) CDS program involving focus groups, interviews and surveys with cancer patients, their caregivers and clinicians. The Acceptability E-scale measured acceptability of the program. In phase 3, we developed design objectives and identified barriers to uptake of patient-centered CDS based on the data gathered from stakeholders.ResultsIn phase 1, algorithms were reviewed and approved through a consensus meeting and majority vote. In phase 2, 24 patients & caregivers and 13 clinicians participated in the formative evaluation. Iterative changes were made in a simulated SAMI-Self-Care CDS program. Acceptability scores were high among patients, caregivers and clinicians. In phase 3, we formulated CDS design objectives, which included: 1) ensure patient safety, 2) communicate clinical concepts effectively, 3) promote communication with clinicians, 4) support patient activation, and 5) facilitate navigation and use. We identified patient barriers and clinician concerns to using CDS for symptom self-management, which were consistent with the chronic care model, a theoretical framework used to enhance patient-clinician communication and patient self-management.ConclusionPatient safety and tool navigation were critical features of CDS for patient self-management. Insights gleaned from this study may be used to inform the development of CDS resources for symptom self-management in patients with other chronic conditions.

A Descriptive Analysis of End-of-Life Conversations With Long-Term Glioblastoma Survivors

Background: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled. Objective: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities. Design/Participants: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation. Measurements/Results: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were “Live as long as possible,” “Be mentally aware,” “Provide support for family,” “Be independent,” and “Be at peace.” Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with “hospice” and “palliative care” most frequently documented. Five of 18 patients had documentation about their goals. Conclusion: Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.

Can we improve the quality of documented end-of-life conversations using a structured, multicomponent intervention?

49 Background: Conversations about serious illness care goals are often inadequate and fail to address key elements of high-quality discussions. METHODS As part of a cluster-randomized trial of a multi-component communication intervention, we conducted a retrospective chart review of 147 deceased oncology patients to assess frequency and timing of documentation of end-of-life (EOL) conversations; charts of a subset of 20 intervention and 20 matched control patients underwent detailed review to assess quality. A systematically developed abstraction tool was used by two blinded researchers. The tool contained 25 elements reflecting four EOL conversation domains: goals/values, illness understanding/prognosis, EOL care planning, life-sustaining treatments. RESULTS Of 153 intervention patients, 44.4% died (n = 68); of 161 controls, 49.1% died (n = 79). Significantly more intervention patients than controls (92.7% vs 74.7%, p = 0.006) had at least 1 documented EOL discussion before death; intervention conversations occurred 3 months earlier (median 147 days vs 62 days, p = 0.003). 59.4% of intervention conversations were documented in a retrievable EHR location compared to 10.2% of controls (p = 0.001). In the detailed review, 85% (n = 17) of intervention and 40% (n = 8) of controls had at least 1 documented discussion about values/goals (p = 0.0001), with an average of 3.6 of 8 elements (0.7 of 8 for controls) (p = 0.0003). 85% percent (n = 17) of intervention and 30% (n = 6) of controls had at least 1 documented discussion about prognosis (p = 0.0014), with an average of 2.5 of 7 elements (0.5 of 7 for controls) (p = 0.001). 85% of intervention (n = 17) and 55% of controls (n = 11) had at least 1 documented discussion about EOL planning (p = 0.009). 55% of intervention and 30% of controls had at least 1 documented discussion about life-sustaining treatments (p = 0.20). CONCLUSIONS The intervention resulted in more, earlier and better documentation of serious illness care goals. Across 3 of 4 domains of quality, intervention patients had more detailed information about their EOL care preferences, demonstrating that the intervention results in more patient-centered, comprehensive discussions. CLINICAL TRIAL INFORMATION NCT01786811.