Barriers to HIV-Positive Organ Transplantation: The Role of Organ Procurement Organizations

The HIV Organ Policy Equity (HOPE) Act was passed in 2013 and permits the transplantation of HIV-positive organs into HIV-positive recipients. Analysis prior to the passage of the law suggested there could be at least 500 additional HIV-positive donors added to the donor pool each year, improving outcomes for people with HIV on organ transplant waiting lists. However, in the seven years since the HOPE Act was passed, there have been fewer than 100 HIV-positive donors. There are many possible reasons why there have been so few HIV-positive donors, including a potentially lower willingness among people with HIV to donate organs, less desire among HIV-positive recipients to accept these organs, and less willingness of transplant surgeons to transplant organs from HIV-positive donors. Additionally, many barriers to HIV-positive donation and transplantation could exist within organ procurement organizations (OPOs), a set of 58 non-profit organizations responsible for pursuing organ donors, obtaining authorization for donation, and placing organs for transplant. This dissertation uses a mixed methods approach to explore the experiences of OPOs implementing the HOPE Act and barriers they have encountered while pursuing HIV-positive donors. The first paper reports the results of a qualitative analysis of a series of semi-structured interviews with OPO staff exploring their experiences with HIV-positive donation and the barriers they have observed thus far. The second paper reports the results of a survey of OPO staff that quantifies their experiences working with HIV-positive donors, the barriers they have observed, and their attitudes towards HIV-positive donors. The third paper uses a discrete choice experiment to test how various attributes of potential donors (including HIV status) affect the willingness of OPO staff to pursue a potential donor. This study identified several different barriers that OPOs have experienced while pursuing HIV-positive donors so far, including more complex authorization discussions, stigma towards people with HIV, and state laws that ban HIV-positive transplantation. OPO staff also believe that it is harder to place HIV-positive organs for transplant and that hospitals may not pursue the option of donation as aggressively for these donors. However, the discrete choice experiment also identified a preference for HIV-negative donors compared to HIV-positive donors. This suggests that OPO staff preferences for HIV-negative donors may be partly to blame for the relative lack of HIV-positive donors so far

Barriers to HIV-Positive Organ Transplantation: The Role of Organ Procurement Organizations

The HIV Organ Policy Equity (HOPE) Act was passed in 2013 and permits the transplantation of HIV-positive organs into HIV-positive recipients. Analysis prior to the passage of the law suggested there could be at least 500 additional HIV-positive donors added to the donor pool each year, improving outcomes for people with HIV on organ transplant waiting lists. However, in the seven years since the HOPE Act was passed, there have been fewer than 100 HIV-positive donors. There are many possible reasons why there have been so few HIV-positive donors, including a potentially lower willingness among people with HIV to donate organs, less desire among HIV-positive recipients to accept these organs, and less willingness of transplant surgeons to transplant organs from HIV-positive donors. Additionally, many barriers to HIV-positive donation and transplantation could exist within organ procurement organizations (OPOs), a set of 58 non-profit organizations responsible for pursuing organ donors, obtaining authorization for donation, and placing organs for transplant. This dissertation uses a mixed methods approach to explore the experiences of OPOs implementing the HOPE Act and barriers they have encountered while pursuing HIV-positive donors. The first paper reports the results of a qualitative analysis of a series of semi-structured interviews with OPO staff exploring their experiences with HIV-positive donation and the barriers they have observed thus far. The second paper reports the results of a survey of OPO staff that quantifies their experiences working with HIV-positive donors, the barriers they have observed, and their attitudes towards HIV-positive donors. The third paper uses a discrete choice experiment to test how various attributes of potential donors (including HIV status) affect the willingness of OPO staff to pursue a potential donor. This study identified several different barriers that OPOs have experienced while pursuing HIV-positive donors so far, including more complex authorization discussions, stigma towards people with HIV, and state laws that ban HIV-positive transplantation. OPO staff also believe that it is harder to place HIV-positive organs for transplant and that hospitals may not pursue the option of donation as aggressively for these donors. However, the discrete choice experiment also identified a preference for HIV-negative donors compared to HIV-positive donors. This suggests that OPO staff preferences for HIV-negative donors may be partly to blame for the relative lack of HIV-positive donors so far

Implementation and Sequencing of Practice Transformation in Urban Practices with Underserved Patients.

BackgroundPatient-centered medical home (PCMH) has gained momentum as a model for primary-care health services reform.MethodsWe conducted interviews at 14 primary care practices undergoing PCMH transformation in a large urban federally qualified health center in California and used grounded theory to identify common themes and patterns.ResultsWe found clinics pursued a common sequence of changes in PCMH transformation: Clinics began with National Committee for Quality Assurance (NCQA) level 3 recognition, adding care coordination staff, reorganizing data flow among teams, and integrating with a centralized quality improvement and accountability infrastructure. Next, they realigned to support continuity of care. Then, clinics improved access by adding urgent care, patient portals, or extending hours. Most then improved planning and management of patient visits. Only a handful worked explicitly on improving access with same day slots, scheduling processes, and test result communication. The clinics' changes align with specific NCQA PCMH standards but also include adding physicians and services, culture changes, and improved communication with patients.ConclusionsNCQA PCMH level 3 recognition is only the beginning of a continuous improvement process to become patient centered. Full PCMH transformation took time and effort and relied on a sequential approach, with an early focus on foundational changes that included use of a robust quality improvement strategy before changes to delivery of and access to care

Implementation and Sequencing of Practice Transformation in Urban Practices with Underserved Patients.

BackgroundPatient-centered medical home (PCMH) has gained momentum as a model for primary-care health services reform.MethodsWe conducted interviews at 14 primary care practices undergoing PCMH transformation in a large urban federally qualified health center in California and used grounded theory to identify common themes and patterns.ResultsWe found clinics pursued a common sequence of changes in PCMH transformation: Clinics began with National Committee for Quality Assurance (NCQA) level 3 recognition, adding care coordination staff, reorganizing data flow among teams, and integrating with a centralized quality improvement and accountability infrastructure. Next, they realigned to support continuity of care. Then, clinics improved access by adding urgent care, patient portals, or extending hours. Most then improved planning and management of patient visits. Only a handful worked explicitly on improving access with same day slots, scheduling processes, and test result communication. The clinics' changes align with specific NCQA PCMH standards but also include adding physicians and services, culture changes, and improved communication with patients.ConclusionsNCQA PCMH level 3 recognition is only the beginning of a continuous improvement process to become patient centered. Full PCMH transformation took time and effort and relied on a sequential approach, with an early focus on foundational changes that included use of a robust quality improvement strategy before changes to delivery of and access to care

Use of CAHPS® patient experience survey data as part of a patient-centered medical home quality improvement initiative.

ObjectiveTo describe how practice leaders used Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group (CG-CAHPS) data in transitioning toward a patient-centered medical home (PCMH).Study designInterviews conducted at 14 primary care practices within a large urban Federally Qualified Health Center in California.ParticipantsThirty-eight interviews were conducted with lead physicians (n=13), site clinic administrators (n=13), nurse supervisors (n=10), and executive leadership (n=2).ResultsSeven themes were identified on how practice leaders used CG-CAHPS data for PCMH transformation. CAHPS® was used: 1) for quality improvement (QI) and focusing changes for PCMH transformation; 2) to maintain focus on patient experience; 3) alongside other data; 4) for monitoring site-level trends and changes; 5) to identify, analyze, and monitor areas for improvement; 6) for provider-level performance monitoring and individual coaching within a transparent environment of accountability; and 7) for PCMH transformation, but changes to instrument length, reading level, and the wording of specific items were suggested.ConclusionPractice leaders used CG-CAHPS data to implement QI, develop a shared vision, and coach providers and staff on performance. They described how CAHPS® helped to improve the patient experience in the PCMH model, including access to routine and urgent care, wait times, provider spending enough time and listening carefully, and courteousness of staff. Regular reporting, reviewing, and discussing of patient-experience data alongside other clinical quality and productivity measures at multilevels of the organization was critical in maximizing the use of CAHPS® data as PCMH changes were made. In sum, this study found that a system-wide accountability and data-monitoring structure relying on a standardized and actionable patient-experience survey, such as CG-CAHPS, is key to supporting the continuous QI needed for moving beyond formal PCMH recognition to maximizing primary care medical home transformation

Use of CAHPS® patient experience survey data as part of a patient-centered medical home quality improvement initiative

ObjectiveTo describe how practice leaders used Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group (CG-CAHPS) data in transitioning toward a patient-centered medical home (PCMH).Study designInterviews conducted at 14 primary care practices within a large urban Federally Qualified Health Center in California.ParticipantsThirty-eight interviews were conducted with lead physicians (n=13), site clinic administrators (n=13), nurse supervisors (n=10), and executive leadership (n=2).ResultsSeven themes were identified on how practice leaders used CG-CAHPS data for PCMH transformation. CAHPS® was used: 1) for quality improvement (QI) and focusing changes for PCMH transformation; 2) to maintain focus on patient experience; 3) alongside other data; 4) for monitoring site-level trends and changes; 5) to identify, analyze, and monitor areas for improvement; 6) for provider-level performance monitoring and individual coaching within a transparent environment of accountability; and 7) for PCMH transformation, but changes to instrument length, reading level, and the wording of specific items were suggested.ConclusionPractice leaders used CG-CAHPS data to implement QI, develop a shared vision, and coach providers and staff on performance. They described how CAHPS® helped to improve the patient experience in the PCMH model, including access to routine and urgent care, wait times, provider spending enough time and listening carefully, and courteousness of staff. Regular reporting, reviewing, and discussing of patient-experience data alongside other clinical quality and productivity measures at multilevels of the organization was critical in maximizing the use of CAHPS® data as PCMH changes were made. In sum, this study found that a system-wide accountability and data-monitoring structure relying on a standardized and actionable patient-experience survey, such as CG-CAHPS, is key to supporting the continuous QI needed for moving beyond formal PCMH recognition to maximizing primary care medical home transformation

Breast Implant–associated Anaplastic Large Cell Lymphoma: Updated Results from a Structured Expert Consultation Process

Background: Despite increased cases published on breast implant–associated anaplastic large cell lymphoma (BIA-ALCL), important clinical issues remain unanswered. We conducted a second structured expert consultation process to rate statements related to the diagnosis, management, and surveillance of this disease, based on their interpretation of published evidence. Methods: A multidisciplinary panel of 12 experts was selected based on nominations from national specialty societies, academic department heads, and recognized researchers in the United States. Results: Panelists agreed that (1) this disease should be called “BIA-ALCL”; (2) late seromas occurring >1 year after breast implantation should be evaluated via ultrasound, and if a seroma is present, the fluid should be aspirated and sent for culture, cytology, flow cytometry, and cell block to an experienced hematopathologist; (3) surgical removal of the affected implant and capsule (as completely as possible) should occur, which is sufficient to eradicate capsule-confined BIA-ALCL; (4) surveillance should consist of clinical follow-up at least every 6 months for at least 5 years and breast ultrasound yearly for at least 2 years; and (5) BIA-ALCL is generally a biologically indolent disease with a good prognosis, unless it extends beyond the capsule and/or presents as a mass. They firmly disagreed with statements that chemotherapy and radiation therapy should be given to all patients with BIA-ALCL. Conclusions: Our assessment yielded consistent results on a number of key, incompletely addressed issues regarding BIA-ALCL, but additional research is needed to support these statement ratings and enhance our understanding of the biology, treatment, and outcomes associated with this disease

Treatment goals for rheumatoid arthritis: patient engagement and goal collection

Aim: We developed the Patient-Engaged Health Technology Assessment strategy for survey-based goal collection from patients to yield patient-important outcomes suitable for use in multi-criteria decision analysis. Methods: Rheumatoid arthritis patients were recruited from online patient networks for proofof- concept testing of goal collection and prioritization using a survey. A Project Steering Committee and Expert Panel rated the feasibility of scaling to larger samples. Results: Survey respondents (n = 47) completed the goal collection exercise. Finding effective treatments was rated by respondents as the most important goal, and reducing stiffness was rated as the least important. Feedback from our steering committee and expert panel support the approach’s feasibility for goal identification and ranking. Conclusion: Goals relevant for treatment evaluation can be identified and rated for importance by patients to permit wide input from patients with lived experience of disease