Treatment of Acute Pain in Adults With Sickle Cell Disease in an Infusion Center Versus the Emergency Department : A Multicenter Prospective Cohort Study.

BACKGROUND: Patients with sickle cell disease (SCD) have vaso-occlusive crises (VOCs). Infusion centers (ICs) are alternatives to emergency department (ED) care and may improve patient outcomes. OBJECTIVE: To assess whether care in ICs or EDs leads to better outcomes for the treatment of uncomplicated VOCs. DESIGN: Prospective cohort. (ClinicalTrials.gov: NCT02411396). SETTING: 4 U.S. sites, with recruitment between April 2015 and December 2016. PARTICIPANTS: Adults with SCD living within 60 miles of a study site. MEASUREMENTS: Participants were followed for 18 months after enrollment. Outcomes of interest were time to first dose of parenteral pain medication, whether pain reassessment was completed within 30 minutes after the first dose, and patient disposition on discharge from the acute care visit. Treatment effects for ICs versus EDs were estimated using a time-varying propensity score adjustment. RESULTS: Researchers enrolled 483 participants; the 269 who had acute care visits on weekdays are included in this report. With inverse probability of treatment-weighted adjustment, the mean time to first dose was 62 minutes in ICs and 132 minutes in EDs; the difference was 70 minutes (95% CI, 54 to 98 minutes; E-value, 2.8). The probability of pain reassessment within 30 minutes of the first dose of parenteral pain medication was 3.8 times greater (CI, 2.63 to 5.64 times greater; E-value, 4.7) in the IC than the ED. The probability that a participant's visit would end in admission to the hospital was smaller by a factor of 4 (0.25 [CI, 0.18 to 0.33]) with treatment in an IC versus an ED. LIMITATION: The study was restricted to participants with uncomplicated VOCs. CONCLUSION: In adults with SCD having a VOC, treatment in an IC is associated with substantially better outcomes than treatment in an ED. PRIMARY FUNDING SOURCE: Patient-Centered Outcomes Research Institute.

Pain Experiences of Adults With Sickle Cell Disease and Hematopoietic Stem Cell Transplantation: A Qualitative Study.

OBJECTIVE: Despite increasing use of hematopoietic stem cell transplantation (HSCT) for adults with sickle cell disease (SCD), little is known about pain management experiences throughout this process. The objective of this study was to explore patients' experiences with pain and pain management during and after HSCT for SCD. METHODS: We conducted a qualitative interview study with 10 patients who underwent HSCT for SCD. We transcribed interviews verbatim and inductively identified codes. We used thematic analysis alongside a constant comparative method to develop and refine a codebook that aided in the identification of themes. RESULTS: Four key themes emerged. (1) The pain trajectory: patients described a fluctuating course of pain during HSCT, which often extended long afterwards and impacted all aspects of life, particularly affected by pre-HSCT experiences; (2) The role of opioids-a double-edged sword: patients described opioids as reducing pain but insufficiently to balance significant adverse effects and burden; (3) Patient-centered decision making in pain management: patients described insufficient agency in decisions about opioid use and weaning; and (4) Consequences of health-related stigma: patients described experiences with stigma, mainly related to opioid use and weaning, as similar to pre-HSCT. CONCLUSIONS: From the perspective of patients who have undergone HSCT for SCD, clinicians should use a patient-centered approach, integrating non-opioid approaches into pain management, particularly psychosocial support. As transplant for SCD becomes increasingly available, incorporating patient perspectives may improve health care delivery and overall patient experiences.

Preparing Older Patients With Serious Illness for Advance Care Planning Discussions in Primary Care.

CONTEXT: Little is known about how to prepare older patients for advance care planning (ACP) discussions in primary care. OBJECTIVES: The objective of the study was to explore older patients' perspectives and experiences on ACP discussions with family members and/or primary care clinicians. METHODS: We conducted a qualitative interview study with 20 older patients who were involved in the clinic's ACP quality improvement initiative. We used an inductive approach to generate a coding scheme and used thematic analysis alongside a constant comparative methodology to iteratively refine emergent themes after coding the data. We used the transtheoretical behavior change model to conceptualize the process of ACP discussions, focusing on the contemplation, preparation, and action stages. RESULTS: Four key themes emerged from our analyses: 1) the relevance/importance of ACP as a whole; 2) independently conceptualizing wishes and preferences for the future; 3) the process of engagement in ACP discussions; and 4) different outcomes of ACP discussions. While patients contemplated having an ACP discussion, they needed time to conceptualize their wishes on their own before documenting wishes or engaging with others. Moving to the preparation stage, patients shared their perspectives about how to engage family members and primary care clinicians in ACP discussions and reported different outcomes of these discussions, which varied according to patients' goals for ACP. CONCLUSION: Understanding how to best prepare patients for ACP discussions from patients enrolled in an ACP primary clinic quality improvement initiative may assist primary care practices in developing interventions to improve the occurrence and effectiveness of such discussions.

Older Patients' Perspectives on Quality of Serious Illness Care in Primary Care.

BACKGROUND: Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective. OBJECTIVE: To explore older patients' perspectives on the quality of serious illness care in primary care. DESIGN: Qualitative interview study. PARTICIPANTS: Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic's quality improvement initiative. METHODS: We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method. RESULTS: We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians' perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care. CONCLUSIONS: Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.

Evaluation of the Measuring and Improving Quality in Palliative Care Survey.

PURPOSE: To evaluate the reliability, content validity, and variation among sites of a survey to assess facilitators and barriers to quality measurement and improvement in palliative care programs. METHODS: We surveyed a sample of diverse US and Canadian palliative care programs and conducted postcompletion discussion groups. The survey included constructs addressing educational support and training, communication, teamwork, leadership, and prioritization for quality measurement and improvement. We tested internal consistency reliability, described variation among sites, and reported descriptive feedback on content validity. RESULTS: Of 103 respondents in 11 sites, the most common roles were attending physician (38.9%) and nurse practitioner, clinical nurse specialist, or physician assistant (16.5%). Internal consistency reliability was acceptable (Cronbach's α = .70 to .99) for all but one construct. Results varied across sites by more than 1 point on the 1 to 5 scales between the 10th and 90th percentiles of sites for two constructs in recognition and focus on quality measurement (score range by site, 1.7 to 4.8), one construct in teamwork (score range, 3.1 to 4.6), and five constructs in quality improvement (score range, 1.8 to 4.6). In descriptive content validity evaluation, respondents described the survey as an opportunity for assessing quality initiatives and discussing potential improvements, particularly improvements in communication, training, and engagement of team members regarding program quality efforts. CONCLUSION: This survey to assess palliative care team perspectives on barriers and facilitators for quality measurement and improvement demonstrated reliability, content validity, and initial evidence of variation among sites. Our findings highlight how palliative care team members' perspectives may be valuable to plan, evaluate, and monitor quality-of-care initiatives.