Unsustained complete response of less than 24 months after autologous stem cell transplantation predicts aggressive myeloma with short survival.

Complete response (CR) predicts superior survivals in myeloma. To define the impact of duration of CR posttransplantation on survivals, 71 myeloma patients, who underwent an intended early (a staged approach) or frontline use of bortezomib-based induction, followed by autologous stem cell transplantation (ASCT) were studied. Achievement of CR was assessed every 4-weekly until maximal response after ASCT and then 6-weekly thereafter. All patients had follow-up time of ≥24 months from time of best response, of whom 27 failed to attain CR (non-CR) whereas 44 achieved CR. At 12, 18 and 24 months post-ASCT, 3 (4.2%), 6 (8.4%) and 11 (15.4%) patients lost CR, respectively, with maximal survival difference observed in the group with CR durations of ≥24 or <24 months. Patients with unsustained CR had survival inferior to those never achieving CR (p = 0.05). Unsustained CR of <24 months was associated with international staging system stage III (p = 0.007) and shorter postrelapse survival (p < 0.001). Both overall survival and event-free survival were superior in myeloma patients with CR of ≥24 months (p < 0.001). In multivariate analysis, international staging system stage I/II, CR/nCR post-ASCT and CR duration of ≥24 months remained favourable prognostic factors for both overall survival and event-free survival. In conclusion, CR of <24 months is an independent adverse risk factor for survival with a short postrelapse survival.

Facilitators and barriers to person-centered planning from the perspectives of individuals receiving medicaid home and community-based services and care managers.

BACKGROUND: While person-centered planning is required within Medicaid Home and Community-Based Services (HCBS) programs, we know little about the extent to which it is being implemented and best approaches to measuring quality. OBJECTIVE: Our study explored the experiences of individuals receiving Medicaid HCBS and care managers facilitating person-centered planning in three states to learn from their perspectives of facilitators and barriers. METHODS: We partnered with a national health plan and affiliated health plans in three states for recruitment. We used a semi-structured interview guide to conduct remote interviews with 13 individuals receiving HCBS and 31 care managers. To triangulate our findings, we reviewed assessment instruments from the three states and the person-centered care plans of HCBS recipients. RESULTS: From the perspectives of individuals receiving HCBS, facilitators to person-centered planning included: choice and control, personal goals and strengths, and relational communication. Care managers similarly identified the importance of relational communication, but also identified the development of measurable goals. Barriers from the perspectives of individuals receiving HCBS included: medical orientation of care plan, administrative and systemic barriers, and competencies of care managers. Care managers similarly identified administrative and systemic barriers. CONCLUSIONS: This exploratory study provides important perspectives on implementation of person-centered planning. Findings can help inform improvements in policy and practice, as well as guide future directions in quality measure development and assessment.

Experiences of Women of Short Stature During the Perinatal Period.

OBJECTIVE: To explore the experiences of women of short stature, including women with dwarfism and osteogenesis imperfecta (OI), during the perinatal period. DESIGN: Qualitative descriptive. SETTING: Telephone interviews with women of short stature from across the United States. PARTICIPANTS: Nine women of short stature, including five with dwarfism and four with osteogenesis imperfecta, between the ages of 18 and 55 years who gave birth within the last 10 years. METHODS: We used reflexive thematic analysis to analyze interview data. RESULTS: Four themes represented the participants' experiences during maternity care: Clinicians' Lack of Knowledge, Sources of Information and EmotionalSupport, Clinical Considerations: Effects of Pregnancy and Disability, and Accessibility Barriers and Adaptations. Participants experienced respiratory difficulties and preterm birth. They expressed concerns regarding the lack of clinician knowledge and experience in administering epidural anesthesia to women of short stature and highlighted the important role of disability organizations in disseminating information about childbirth for women with disabilities. CONCLUSION: Childbearing women of short stature require disability-specific maternity care. Our findings highlight the need for disability education programs for nurse-midwives, nurses, physicians, and other clinicians who provide maternity care to women of short stature.

Experiences of individuals self-directing Medicaid Home and Community-Based Services during COVID-19.

BACKGROUND: In response to COVID-19, many state Medicaid Home and Community-Based Services (HCBS) programs increased flexibilities and options for self-direction. OBJECTIVE: Our study sought to investigate the experiences of individuals self-directing during COVID-19. In particular we explored the following areas: 1) How have individuals maintained access to HCBS and workers?; 2) how have individuals maintained safety against COVID-19?; and 3) how have individuals maintained their health and well-being? METHODS: We partnered with community-based and national disability organizations for recruitment. We used a semi-structured interview guide to conduct remote interviews with 36 individuals from eleven states. The sample was diverse with regard to age, race/ethnicity, gender, and disability type. RESULTS: Three main themes emerged related to maintaining access to HCBS and direct care workers: 1) Benefits of authority to hire and fire; 2) benefits of ability to hire family members; and 3) fluctuations in needs and availability of workers. Two themes emerged related to maintaining safety against COVID-19: 1) Strategies for staying safe with workers; and 2) barriers in public health and service system response. Three themes emerged related to maintaining health and well-being: 1) Barriers to basic needs; 2) delaying needed care; and 3) use of telehealth and technology. CONCLUSIONS: This study was among the first to examine the experiences of individuals self-directing their HCBS during COVID-19. The flexibility of the model provided many benefits, which have implications for future policy and practice. Findings also highlight barriers in maintaining health and well-being during COVID-19, illustrating the importance of planning for future public health emergencies.

Provider-staff discrepancies in reported immunization knowledge and practices.

BACKGROUND: The purpose of the study was to compare immunization-relevant knowledge, certainty about knowledge, self-efficacy, vested interest, and reported practices of providers and clinical staff in the same clinics. METHODS: A valid and reliable instrument measuring the aforementioned issues was developed and administered to a sample of 50 providers and 60 members of the clinical staff. RESULTS: Providers were significantly more knowledgeable than staff (P < 0.001); however, they were not more certain about their knowledge (P = 0.52) nor were they more confident in their capability to properly immunize all children in their practice (P = 0.10). Providers reported lower vested interest in immunizations than clinical staff (P < 0.05). Both groups were equally likely to immunize a child with a cold. Providers were less likely to defer needed immunizations for a 15-month-old child, and they were more likely to administer multiple injections to an 18-month-old (both P < 0.05). Providers were more likely than staff to immunize during acute and chronic illness visits (both P < 0.001), and both groups were equally likely to immunize during preventive visits. CONCLUSIONS: Discrepancies in reported immunization practices between providers and staff may be a barrier to full immunization.