Comparing organization-focused and state-focused financing strategies on provider-level reach of a youth substance use treatment model: a mixed-method study.

BACKGROUND: Financial barriers in substance use disorder service systems have limited the widespread adoption-i.e., provider-level reach-of evidence-based practices (EBPs) for youth substance use disorders. Reach is essential to maximizing the population-level impact of EBPs. One promising, but rarely studied, type of implementation strategy for overcoming barriers to EBP reach is financing strategies, which direct financial resources in various ways to support implementation. We evaluated financing strategies for the Adolescent Community Reinforcement Approach (A-CRA) EBP by comparing two US federal grant mechanisms, organization-focused and state-focused grants, on organization-level A-CRA reach outcomes. METHOD: A-CRA implementation took place through organization-focused and state-focused grantee cohorts from 2006 to 2021. We used a quasi-experimental, mixed-method design to compare reach between treatment organizations funded by organization-focused versus state-focused grants (164 organizations, 35 states). Using administrative training records, we calculated reach as the per-organization proportion of trained individuals who received certification in A-CRA clinical delivery and/or supervision by the end of grant funding. We tested differences in certification rate by grant type using multivariable linear regression models that controlled for key covariates (e.g., time), and tested threats to internal validity from our quasi-experimental design through a series of sensitivity analyses. We also drew on interviews and surveys collected from the treatment organizations and (when relevant) interviews with state administrators to identify factors that influenced reach. RESULTS: The overall certification rates were 27 percentage points lower in state-focused versus organization-focused grants (p = .01). Sensitivity analyses suggested these findings were not explained by confounding temporal trends nor by organizational or state characteristics. We did not identify significant quantitative moderators of reach outcomes, but qualitative findings suggested certain facilitating factors were more influential for organization-focused grants (e.g., strategic planning) and certain barrier factors were more impactful for state-focused grants (e.g., states finding it difficult to execute grant activities). DISCUSSION: As the first published comparison of EBP reach outcomes between financing strategies, our findings can help guide state and federal policy related to financing strategies for implementing EBPs that reduce youth substance use. Future work should explore contextual conditions under which different financing strategies can support the widespread implementation of EBPs for substance use disorder treatment.

Association of Hospice Profit Status With Family Caregivers' Reported Care Experiences.

Importance: Expansive growth in the US hospice market has been driven almost exclusively by an increase in for-profit hospices. Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff. However, prior studies have not reported on the associations of these differences in care patterns with hospice care quality. Patient- and family-centeredness is a core element of hospice care quality that is measured through surveys of care experiences. Objective: To examine whether differences in profit status are associated with family caregivers' reports of hospice care experiences and assess factors that may be associated with observed differences in care experiences by profit status. Design, Setting, and Participants: Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data from 653 208 caregiver respondents, reflecting care received from 3107 hospices between April 2017 and March 2019, were used for a cross-sectional examination of hospice care experiences by profit status. Data analysis was performed from January 2020 to November 2022. Main Outcomes and Measures: Outcomes were case-mix-adjusted and mode-adjusted top-box scores for 8 measures of hospice care experiences, including communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics. Results: There were 906 not-for-profit and 1761 for-profit hospices with mean (SD) time in operation of 25.7 (7.8) years and 13.8 (8.0) years, respectively. Mean (SD) decedent age at death was 82.8 (2.3) years, similar for not-for-profit and for-profit hospices. The mean proportion of patients who were Black, Hispanic, and White was 4.9%, 0.9%, and 91.4% for not-for-profit hospices and 9.0%, 2.2%, and 85.4% for for-profit hospices, respectively. Family caregivers reported worse care experiences at for-profit hospices than at not-for-profit hospices for all measures. Significant differences in average hospice performance by profit status remained after adjusting for hospice characteristics. However, for-profit hospice performance varied, with 548 of 1761 (31.1%) for-profit hospices scoring 3 or more points below the national hospice average of overall performance and 386 of 1761 (21.9%) scoring 3 or more points above the average. In contrast, only 113 of 906 (12.5%) not-for-profit hospices scored 3 or more points below the average, and 305 of 906 (33.7%) scored 3 or more points above the average. Conclusions and Relevance: In this cross-sectional study of CAHPS Hospice Survey data, caregivers of patients receiving hospice care reported substantially worse care experiences in for-profit than in not-for-profit hospices; however, there was variation in reported experiences among both types of hospices. Public reporting of hospice quality is important.

Assessing the state of care for Huntington disease in the United States: Results from a survey of practices treating Huntington disease patients.

Background: No study to date has thoroughly examined US Huntington disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists. Objective: To obtain a clearer understanding of current care structure and delivery of care through a survey of representative US physicians treating HD patients. Methods: We designed and fielded a survey of 40 closed-ended evaluative items and one open-ended item to a sample of 339 US practices. Unique to this survey was the inclusion of non-specialists. Results: Responses were received from 156 practices (overall response rate 46.02 %), with 52.6 % from academic sites, 35.3 % from private practices, and 12.2 % from the VA. More than half (63.5 %) of the practice leads were movement disorder trained or Directors of HDSA Centers of Excellence and 58.3 % had an HD or multidisciplinary care clinic. However, 48.7 % of the practices saw 1-25 HD patients, 28.2 % saw 26-100 HD patients, and 23.1 % served over 100 HD patients annually. Most practices (>69 %) reported having difficulty providing social work, genetic counseling, care coordination and psychologists/psychiatrists. Increased HD practice size was associated with higher rates of pre-visit screenings, care navigator/care coordinators, routine monitoring of weight, and provision of genetic counseling by genetic counselors. Conclusions: Not surprisingly, we found that HD care was inconsistently applied across the US. Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing and procedures as compared to those with fewer numbers of HD patients.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Receiving Desired Help for Pain.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Receiving Desired Help for Pain performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Feeling Heard and Understood.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Feeling Heard and Understood performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

Adjusting for Patient Characteristics to Compare Quality of Care Provided by Serious Illness Programs.

Background: To compare serious illness programs (SIPs) using recently developed patient experience measures, adjustment must be made for patient characteristics not under control of the programs. Objectives: To develop a case-mix adjustment model to enable fair comparison of patient experience between SIPs by investigating the roles of patient characteristics, proxy response, and mode of survey administration (mail-only vs. mail with telephone follow-up) in survey responses. Methods: Using survey data from 2263 patients from 32 home-based SIPs across the United States, we fit regression models to assess the association between patient-level variables and scores for seven quality measures (Communication, Care Coordination, Help for Symptoms, Planning for Care, Support for Family and Friends, and two global assessments of care). Characteristics that are not consequences of the care the program delivered were considered as adjustors. Results: Final recommended case-mix adjustors are age, education, primary diagnosis, self-reported functional status, self-rated physical health, self-rated mental health, proxy respondent use, and response percentile (a measure of how soon a person responded compared with others in the same program and mode). Age, primary diagnosis, self-rated mental health, and proxy respondent use had the most impact on program-level scores. We also recommend adjusting for mode of survey administration. We find that up to 12 percent of pairs of programs would have their rankings reversed by adjustment. Conclusions: To ensure fair comparison of programs, scores should be case-mix adjusted for variables that influence patients' reports about care quality, but are not under the control of the program administering care.

Reliable and Valid Survey-Based Measures to Assess Quality of Care in Home-Based Serious Illness Programs.

Background: There is a pressing need for standardized measures to assess the quality of home-based serious illness care. Currently, there are no validated quality measures that are specific to home-based serious illness programs (SIPs) and the unique needs of their patients. Objective: To develop and evaluate standardized survey-based measures of serious illness care experiences for assessing and comparing quality of home-based serious illness care programs. Methods: From October 2019 through January 2020, we administered a survey to patients who received care from 32 home-based SIPs across the United States. Using the 2263 survey responses, we assessed item performance and constructed composite measures via factor analysis, evaluated item-scale correlations, estimated reliability, and examined validity by regressing overall ratings and willingness to recommend care on each composite. Results: The overall survey response rate was 36%. Confirmatory factor analyses supported five composite quality measures: Communication, Care Coordination, Help for Symptoms, Planning for Care, and Support for Family and Friends. Cronbach's alpha estimates for the composite measures ranged from 0.69 to 0.85, indicating adequate internal consistency in assessing their underlying constructs. Interprogram reliability ranged from 0.67 to 0.80 at 100 completed surveys per measure, meeting common standards for distinguishing between programs' performance. Together, the composites explained 45% of the variance in patients' overall care ratings. Communication, Care Coordination, and Planning for Care were the strongest predictors of overall ratings. Conclusion: Our analyses provide evidence of the feasibility, reliability, and validity of proposed survey-based measures to assess the quality of home-based serious illness care from the perspective of patients and their families.

"If We Turned Our Backs, They Would Ignore Our Wishes": Bereaved Family Perceptions of Concordance of Care at the End of Life.

Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. Setting/Subjects: Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes. Measurements: The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes. Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.

Bereaved Family More Likely to Report "Too Little" Care than "Too Much" Care at the End of Life.

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area. Measure: The survey asked: "During the last month of your family member's life, did he or she receive too little, the right amount, or too much medical care?" Additionally, surveys examined 18 measures of quality of care in the last month of life, reporting concerns or unmet needs with staff communication, symptom management, emotional support, physician communication, treating the patient with dignity, respecting a person's culture, spiritual support, and providing timely help after hours. Results: Of the 623 survey respondents, 16.9% reported their loved one received "too little" care while only 1.4% reported "too much." Likelihood of reporting too little medical care did not differ by age, gender, or being insured by Medicaid only. Respondents who reported "too little" compared with those that stated the "right amount" reported higher unmet needs for symptom palliation, physician communication concerns, with other important opportunities to improve the quality of care. Among the 17 in-depth interviews of those indicating "too little" care on the structured survey, the predominant concern (n = 10) was inadequate symptom management. Conclusion: While the majority of respondents indicated their loved one received the right amount of medical care at the end of life, a notable minority (one in six) indicated that their loved one received too little care.

Racial Differences in End-of-Life Care Quality between Asian Americans and Non-Hispanic Whites in San Francisco Bay Area.

Background: Little is known about end-of-life care experiences of Asian Americans and gaps in end-of-life care quality between Asians and non-Hispanic whites. Objective: Compare the perceptions of next-of-kin of Asian and non-Hispanic white decedents on end-of-life care quality. Design: Mortality follow-back survey. Setting/Subjects: Population-based sample of 108 Asian and 414 non-Hispanic white bereaved family members or close friends of adult, nontraumatic deaths in the San Francisco Bay area in 2018. Measurements: Survey items examined whether health care professionals treated the dying person with respect and dignity, respected their cultural traditions, respected their religious or spiritual beliefs, provided enough information about what to expect during the last month of life, provided emotional support to the family after the patient's death, and whether the dying person and the family received the needed help after work hours. Results: Of the 623 surveys (weighted n = 6513), 108 (weighted percentage = 17.6%) were from caregivers of Asian decedents. Almost half of these respondents indicated that they did not always experience respect for their cultural traditions (45.9% vs. 21.8%, p = 0.00) or respect for their religious and spiritual beliefs (42.2% vs. 24.5%, p = 0.01). With the exception of two outcomes, worse caregiver-reported care quality for Asian decedents persisted after adjustment for cause of death, site of death, type of health insurance, respondent's relationship to decedent, decedent age, and respondent education. Conclusions: Compared with caregivers of non-Hispanic whites, caregivers of Asian decedents reported unmet needs for caregiver support and lack of respect for cultural traditions and religious/spiritual beliefs.

Characteristics of Hospices Providing High-Quality Care.

Background: The hospice market has changed substantially, shifting from predominately not-for-profit independent entities to for-profit national chains. Little is known about how hospice organizational characteristics are associated with quality of hospice care. Objective: To examine the association between hospice characteristics and care processes and performance on measures of hospice care quality. Design: Logistic regression models assessed the association between hospice characteristics and processes and hospices being in the top quartile of quality measure performance. Setting/Subjects: U.S. hospices with publicly reported measure scores in 2015-2017. Measurements: Summaries of hospice-level performance on Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey measures (including communication, timely care, symptom management, emotional and spiritual support, respect, training families, overall rating, and willingness to recommend) and Hospice Item Set (HIS) measures (including pain screening and assessment, dyspnea screening and treatment, bowel regimen for patients on opioids, discussion of treatment preferences, and beliefs/values addressed). Results: Of the 2746 hospices that met public reporting requirements, 5.6% were in the top quartile of both CAHPS and HIS performance. Characteristics associated with being in the top quartile for CAHPS included being a nonprofit and nonchain or government hospice, smaller size (<200 patients per year), and serving a rural area. Characteristics associated with being in the top quartile for HIS included being in a for-profit chain, larger size (91+ patients per year), and having <40% of patients in a nursing home. Providing professional staff visits in the last two days of life to a higher proportion of patients was associated with hospices being in the top quartile of HIS and in the top quartile of CAHPS. Conclusions: Hospice characteristics associated with strong performance on HIS measures differ from those associated with strong performance on CAHPS measures. Providing professional staff visits in the last two days of life is associated with high performance on both quality domains.