In-Person or Virtual Educational Preferences in Patients With Fibromyalgia: A Cross-Sectional Survey Study at an Academic Medical Center.

PURPOSE: Patient education is a core component of treating fibromyalgia and central sensitization disorders. We sought to evaluate whether patients with fibromyalgia prefer virtual or in-person educational classes as part of their treatment program, identify underlying factors with their educational modality choice, and highlight benefits or barriers associated with in-person or online educational sessions. DESIGN: A cross-sectional survey with a qualitative feedback component was utilized. METHODS: A voluntary, anonymous survey was distributed to all participants (in-person and virtual) of the fibromyalgia and chronic fatigue clinic treatment program from October 2021 through March 2022. RESULTS: In total 90 participants completed the survey. Nearly all (94%) agreed that the pathophysiologic education was relevant and valuable and (98%) agreed to feeling confident with implementing management strategies. Perceived connection between the participants varied between groups (85% of in-person vs 48% of online; p < .001), as did perceived engagement (100% of in-person vs 71% of online; p = .001). CONCLUSIONS: Patients value education and find it useful in treating fibromyalgia, regardless of the educational modality. The online group reported more limitations including less engagement, class participation, and connection with peers. CLINICAL IMPLICATIONS: As virtual education platforms become more widely available and may be easier to access than in-person options, it is important to understand patient preferences, benefits, and disadvantages of educational modalities to ensure education and patient outcomes remain equitable.

Applied denitrifying bioreactor cost efficiencies based on empirical construction costs and nitrate removal.

Adoption of edge-of-field conservation practices, such as denitrifying bioreactors, may be intrinsically linked to barriers associated with cost. However, most previous bioreactor cost efficiency assessments assumed values for either costs and/or nitrate removal. The objective of this work was to use actual construction costs as well as monitored nitrate removal to develop empirical cost efficiencies for eight full-size bioreactors in Illinois, USA. Capital construction costs were obtained via invoices or personal communications. A cash-flow discounting procedure was used to develop an equal annualized cost for each bioreactor assuming two media recharges over a 24-y planning horizon. These costs were combined with monitored nitrate removal based on one to six years of monitoring per site. Construction costs averaged $12,250 ± $7520 across the eight sites (or, $16,020 ± $9960 in 2023 price levels) but considering one of the sites was a paired bioreactor system, costs averaged $10,890 per bioreactor unit. Drainage treatment area-based cost averaged $132/ha-y and treatment area was strongly correlated with capital costs (R2 = 0.90; p = 0.001). The bioreactors averaged $108/m3 of woodchips and available federal government conservation programs could have offset an average of 70% of this cost. Monitored nitrate removal across 27 site-years resulted in a median of $33/kg N-y removed. This mass-based cost efficiency was higher than most previous assessments because the monitored nitrate removal for the study sites was lower than has been previously assumed or modeled. Future reporting about bioreactor recharge timing and cost will help guide assessment and planning. Water quality planning efforts should also consider the increasingly important engineering design costs, which were not included here. Suggested research and outreach to improve bioreactor cost efficiencies involves scaling the physical capacity of this technology for larger treatment areas, revisiting the use of low-cost non-standard fill media, and providing practical construction training.

High NHLRC2 expression is associated with shortened survival in lung adenocarcinoma.

Background: Certain variants of NHL repeat (named after NCL-1, HT2A and LIN-41)-containing protein 2 (NHLRC2) gene have been linked to severe fibrotic interstitial lung disease in children. The aim of the current study was to evaluate the expression of NHLRC2 in lung cell and tissue samples from patients with lung adenocarcinoma (ADC) and squamous cell carcinoma (SCC). Methods: The expression of NHLRC2 in lung tissue samples was studied by immunohistochemistry (102 ADC, 111 SCC), mRNA in situ hybridization (4 ADC, 3 SCC), and Western blot analysis (3 ADC, 2 SCC). The immunohistochemical NHLRC2 expression was measured by image analysis software and the percentage of NHLRC2-positive cancer cells was evaluated by semiquantitative analysis. The immunohistochemical results of NHLRC2 were compared with the clinical and histological characteristics of the patients. NHLRC2 protein levels in primary stromal and epithelial lung cancer cell lines were measured by Western blot analysis. Results: NHLRC2 was mainly expressed in cancer cells and inflammatory cells within the tumor. The NHLRC2 expression evaluated by image analysis method was significantly higher in ADC compared with that in SCC (P<0.001). High NHLRC2 expression was associated with reduced disease specific survival (P=0.002), overall survival (P=0.001), and high mitotic activity (P=0.042) in ADC. Additionally, the proportion of NHLRC2-positive cancer cells analyzed by the semiquantitative method was significantly higher in ADC than in SCC (P<0.001). Conclusions: NHLRC2 expression was higher in lung ADC than in SCC and its expression was associated with poor survival in ADC patients. Further studies are required to clarify the pathogenetic role of NHLRC2 in lung cancer.

A randomised controlled provider-blinded trial of community health workers in sickle cell anaemia: effects on haematologic variables and hydroxyurea adherence.

Hydroxyurea (hydroxycarbamide) (HU) for sickle cell anaemia (SCA) is underutilised. Case management is an evidence-based health management strategy and in this regard patient navigators (PNs) may provide case management for SCA. We hypothesised that HU-eligible patients exposed to PNs would have improved indicators of starting HU and HU adherence. We randomised 224 HU-eligible SCA adults into the Start Healing in Patients with Hydroxyurea (SHIP-HU) Trial. All patients received care from trained physicians using standardised HU prescribing protocols. Patients in the Experimental arm received case management and education from PNs through multiple contacts. All other patients were regarded as the Control arm and received specialty care alone. Study physicians were blinded to the study arms and did not interact with PNs. At baseline, 6 and 12 months we assessed and compared laboratory parameters and HU adherence indicators. Experimental patients had higher 6-month mean fetal haemoglobin (HbF) levels than controls. But at 12 months, mean HbF was similar, as were white blood cell count, absolute neutrophil count, total haemoglobin, platelet count and mean corpuscular volume. At 12 months there were fewer experimental patients missing HU doses than controls (mean 1·8 vs. 4·5, P = 0·0098), and more recent HU prescriptions filled than for controls (mean 53·8 vs. 92 days, median 27·5 vs. 62 days, P = 0·0082). Mean HU doses were largely similar. We detected behavioural improvements in HU adherence but no haematological improvements by adding PNs to specialty care.

Indirect Economic Burden of Sickle Cell Disease.

OBJECTIVE: This study aimed to quantify the indirect costs of sickle cell disease in the United States. METHODS: Adult patients from a sickle cell disease clinic at an urban academic healthcare system completed an adapted Institute for Medical Technology Assessment Productivity Cost Questionnaire related to the impact of their disorder on absenteeism, presenteeism, ability to contribute through unpaid work outside of employment, and other aspects of life. Additional data were collected from patient records about each participant's genotype, total hemoglobin level, and pain level. RESULTS: Of the 192 individuals, 187 who completed the survey reported experiencing vaso-occlusive crisis pain events during the last year that negatively affected their productivity at work and in daily roles. Three-fourths of respondents reported impairment in their ability to complete everyday tasks, such as caring for children, running errands, doing housework, shopping for groceries, and volunteer (unpaid) work. Only 30% of respondents reported being employed or self-employed. Of those employed, estimated costs of absenteeism and presenteeism attributable to pain events averaged $15 103 per person annually. Estimated total annual losses in unpaid work productivity averaged $3 145 862 for the study respondents and another $2 870 652 for their caregivers. CONCLUSIONS: Sickle cell disease affected the work productivity, nonwork productivity, and the daily lives of adults seen with the disorder in an academic medical center.

Use of Community Based Participatory Research to Design Interventions for Healthy Lifestyle in an Alternative Learning Environment.

INTRODUCTION/OBJECTIVES: Childhood obesity develops as the result of the interplay between individual and environmental factors. Community based participatory research (CBPR) is an effective tool for improving health of communities. There is limited research on CBPR for facilitating healthy lifestyle in community schools with an alternative learning environment. The objective of the study was to explore student and staff perspectives via focus groups on barriers and facilitators for healthy eating and physical activity in a community school with alternative learning environment and to prioritize, design, and implement suggested interventions to improve healthy lifestyle. METHODS: We conducted qualitative research through 8 focus groups of middle and high school students (n = 40) and 2 focus groups of school staff (n = 8). The school community and research team subsequently identified and implemented interventions for facilitating healthy lifestyle in students within the school environment. RESULTS: Barriers identified for healthy lifestyle included lack of motivation, lack of healthy food options at school, inadequate knowledge about healthy lifestyle and insufficient opportunities for physical activity. Facilitators for healthy lifestyle were support and motivation from mentors and knowledge about healthy nutrition. Key strategies implemented were addition of healthier food options, educational materials for healthy eating, creation of a walk path, standing desks in classrooms and additional equipment in the school gymnasium. CONCLUSIONS: Formative feedback from students and staff was helpful in the implementation of strategies for facilitating healthy lifestyle among students within a community school with an alternative learning environment.

Tobacco Dependence Treatment in Oncology: Initial Patient Clinical Characteristics and Outcomes from Roswell Park Comprehensive Cancer Center.

Despite the importance of smoking cessation to cancer care treatment, historically, few cancer centers have provided treatment for tobacco dependence. To address this gap, the National Cancer Institute (NCI) launched the Cancer Center Cessation Initiative (C3i). As part of this effort, this study examined implementation outcomes in a cohort of cancer survivors (CSs) who smoked cigarettes in the first year of an ongoing process to develop and implement a robust Tobacco Treatment Service at Roswell Park Comprehensive Cancer Center. We provide a comprehensive description of the new tobacco use assessment and referral process, and of the characteristics of cancer survivors who agreed to treatment including traditional tobacco-related psychosocial and cancer treatment-related characteristics and novel characteristics such as delay discounting rates. We also examine characteristic differences among those who agreed to treatment between those who attended and those who did not attend treatment. As the new tobacco assessment was implemented, the number of referrals increased dramatically. The mean number of treatment sessions attended was 4.45 (SD = 2.98) and the six-month point prevalence intention to treat abstinence rate among those who attended was 22.7%. However, only 6.4% agreed to treatment and 4% attended at least one treatment session. A large proportion of cancer survivors who agreed to treatment were women, of older age, of lower socioeconomic status (SES), and who had high levels of depressive symptomology. The findings demonstrate that the implementation of system changes can significantly improve the identification of cancer survivors who use tobacco and are referred to tobacco use treatment. Among those who attend, treatment is effective. However, the findings also suggest that a systematic assessment of barriers to engagement is needed and that cancer survivors may benefit from additional treatment tailoring. We present plans to address these implementation challenges. Systematic electronic medical record (EMR)-sourced referral to tobacco treatment is a powerful tool for reaching cancer survivors who smoke, but more research is needed to determine how to enhance engagement and tailor treatment processes.

Information Needs for Treatment Decision-making of Hematopoietic Cell Transplant Patients 65 Years or Older and Caregivers.

Hematopoietic cell transplantation (HCT) is a complex and potentially life-threatening treatment option for patients with hematologic malignant and non-malignant diseases. Advances have made HCT a potentially curative treatment option for patients 65 years of age and older (older patients), and patient education resources should be adapted to meet their needs. To better understand the information needs of older patients and their caregivers for HCT treatment decision-making, the National Marrow Donor Program® (NMDP)/Be The Match® conducted a qualitative comprehensive needs assessment. Focus groups, offered in person or by phone, were conducted with older HCT patients and primary caregivers of older HCT patients at three transplant centers in the USA that were selected based on the number of older adults treated and geographic diversity. The one-hour, semi-structured discussions were recorded and transcribed verbatim. The analysis was performed with the NVivo 10 software for identification of conceptual themes. Five telephone and six in person focus groups of patients (n = 35) and caregivers (n = 10) were conducted. Themes that emerged included the following: (1) the need for tailored resources with age-specific recovery expectations; (2) the need for the right amount of information at the right times; and (3) the benefit of peer support. Effective patient education supports learning and treatment decision-making. As HCT increasingly becomes a treatment option for older patients, tailored educational resources are needed. These focus group results can inform and guide the development of new educational resources for older adults with hematologic diseases considering and planning for HCT.

Development of a Framework to Describe Functions and Practice of Community Health Workers.

There is evidence to support the effectiveness of community health workers (CHWs), as they practice in a wide range of health care settings; yet, the perceived value of CHWs suffers from a lack of uniform credentialing and from a dearth of billing and payment structures to recognize their individual work. In turn, credentialing and billing for the work of CHWs is hampered by widely variable regulation, conflicting job titles and position descriptions, and general confusion about CHW identity, sometimes complicated by service boundaries that overlap with those of other health care and social service occupations. This article presents evidence from a rapid review of the CHW literature from 2003 to 2018. It includes clinical trials, meta-analyses, and policy reports summarizing more than 200 CHW interventions intended to improve patient health status or care delivery. The evidence is used to identify CHW roles, responsibilities, behaviors, and competencies. Four categories of CHW practice are developed from the evidence: peer CHW, general CHW, clinical CHW, and health navigator. A framework is proposed to recognize unique CHW roles, promote and further integrate varied levels of CHW function into health care-related organizations, and to inform decisions regarding certification, education, and payment for CHW services in the United States.

Lessons Learned from Building a Pediatric-to-Adult Sickle Cell Transition Program.

OBJECTIVE: More effective transitions and transfers of young people with sickle cell disease (SCD) into the adult healthcare setting is a focus of both primary care and specialty care medical organizations. Effective transition and transfer requires six core elements: establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring to adult care, and integrating into an adult practice. We developed a program using these six core elements. The objective of our report was to assess the development and implementation of this program. METHODS: We used the six core elements to develop and implement a program at Virginia Commonwealth University for children and adolescents with SCD to transition to adult health care. RESULTS: We assessed individuals' differences by age and grade, their independent living skills, their feelings about moving to adult care; tallied and analyzed several assessment scales; and assessed transfer success and patient retention. CONCLUSIONS: The principles and lessons we learned in developing and implementing this program over 5 years, accompanied by caring, flexible, and dedicated care team members, often can overcome even severe barriers to care transitions.

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation.

The goal of patient-centered outcomes research (PCOR) is to help patients and those who care for them make informed decisions about healthcare. However, the clinical research enterprise has not involved patients, caregivers, and other nonproviders routinely in the process of prioritizing, designing, and conducting research in hematopoietic cell transplantation (HCT). To address this need the National Marrow Donor Program/Be The Match engaged patients, caregivers, researchers, and other key stakeholders in a 2-year project with the goal of setting a PCOR agenda for the HCT community. Through a collaborative process we identified 6 major areas of interest: (1) patient, caregiver, and family education and support; (2) emotional, cognitive, and social health; (3) physical health and fatigue; (4) sexual health and relationships; (5) financial burden; and (6) models of survivorship care delivery. We then organized into multistakeholder working groups to identify gaps in knowledge and make priority recommendations for critical research to fill those gaps. Gaps varied by working group, but all noted that a historical lack of consistency in measures use and patient populations made it difficult to compare outcomes across studies and urged investigators to incorporate uniform measures and homogenous patient groups in future research. Some groups advised that additional pre-emptory work is needed before conducting prospective interventional trials, whereas others were ready to proceed with comparative clinical effectiveness research studies. This report presents the results of this major initiative and makes recommendations by working group on priority questions for PCOR in HCT.

Role of Nursing Competencies for Accelerating Clinical Trials in Stem Cell Clinics.

The California Institute for Regenerative Medicine has formed a group of clinics called the Alpha Stem Cell Clinics Network. Its goal is to accelerate clinical trials of stem cell-based therapies for diseases with unmet medical needs. In this report, we describe our experience in establishing an Alpha Stem Cell Clinic at City of Hope. Implementation and integration of the clinic into the existing institutional structures required collaboration and cooperation with clinical trial units, nursing administration, and creation of new positions. The highlight of this process and the centerpiece to our success has been the definition of the role of the "hybrid nurse," a person with nursing competencies in both clinical care and research. Stem Cells Translational Medicine 2018;7:6-10 Abstract Video Link: https://youtu.be/WOeZrNyXkGU.

Histological features of malignancy correlate with growth patterns and patient outcome in lung adenocarcinoma.

AIMS: Until the launch of the International Association for the Study of Lung Cancer/American Thoracic Society/European Respiratory Society adenocarcinoma classification in 2011, there were no uniform histological grading criteria for pulmonary adenocarcinomas. The current classification highlights the prognostic importance of the various histological growth patterns observed in these morphologically heterogeneous neoplasias. In this study, we aimed to evaluate the classic histological parameters of malignancy in correlation with the growth patterns and patient outcomes in a series of 112 surgically operated stage I-IV lung adenocarcinomas. METHODS AND RESULTS: Architectural growth pattern analysis was performed according to the current adenocarcinoma classification. Histological features including, for example, nuclear atypia, mitotic activity, tumour necrosis, and different patterns of invasion were assessed and correlated statistically with the architecture and the clinical data. A solid predominant histology was associated with increased levels of atypia (P = 0.027), mitotic activity (P < 0.001), necrosis (P < 0.001), and lymphovascular invasion (P = 0.001), and a non-predominant solid pattern was associated with intra-alveolar tumour spread (P = 0.004). The presence of a non-predominant lepidic tumour component showed inverse correlations with atypia (P = 0.002), mitotic rate (P = 0.009), and tumour necrosis (P < 0.001). Tumour size (P < 0.001), mitotic activity (P = 0.019), tumour necrosis (P = 0.002), lymphovascular invasion (P = 0.001) and visceral pleural involvement (P = 0.001) were all associated with reduced disease-specific survival. CONCLUSIONS: The classic histological features of malignancy correlate with tumour architecture and patient outcome, confirming the prognostic value of the growth pattern analysis and questioning the need for a parallel grading system in pulmonary adenocarcinoma.

Survey of Physician Perspective towards Management of Pain for Chronic Conditions in the Emergency Department.

Sickle cell disease (SCD) pain is often acute-on-chronic, likening it to other chronic acute-on-chronic pain conditions. Pain treatment of SCD was already reported as inadequate prior to the current opioid epidemic, but attitudes underlying treatment were understudied. Understanding these attitudes prior to the current epidemic would be revealing. Therefore in 1997, before the current opioid epidemic, we surveyed physicians' attitudes toward pain management and treatment preferences for acute pain exacerbations in the Emergency Department in SCD versus those of chronic pancreatitis and chronic low back pain, two other acute-on-chronic pain diseases. Thirty-nine residency trainees were surveyed in a level one triage hospital. Resident estimates of the rate of opioid addiction in SCD were higher than estimates in both chronic pancreatitis and chronic low back pain. Most residents relied on their personal clinical experience rather than external sources of data or knowledge as the most important driver when they managed chronic pain. This survey research shows that, predating the current opioid epidemic, there was both a backdrop of opioid-phobia and a bias against treating SCD pain compared to other chronic pain conditions among our sample. Repeating this survey research among current training physicians, along with surveys of other attitudes, would provide useful comparisons.

Mucin-1 correlates with survival, smoking status, and growth patterns in lung adenocarcinoma.

Mucin-1 (MUC1) affects cancer progression in lung adenocarcinoma, and its aberrant expression pattern has been correlated with poor tumor differentiation and impaired prognosis. In this study, the immunohistochemical expression of MUC1 and Mucin-4 (MUC4) was analyzed in a series of 106 surgically operated stage I-IV pulmonary adenocarcinomas. MUC1 immunohistochemistry was evaluated according to the Nagai classification, and the immunohistochemical profile of the tumors was correlated with detailed clinical and histological data. The effect of cigarette smoke on MUC1 expression in lung cancer cell lines was examined using real-time quantitative reverse transcription polymerase chain reaction (RT-qPCR) and immunoelectron microscopy (IEM). In contrast to the normal apical localization of MUC1, a basolateral and cytoplasmic (depolarized) MUC1 expression pattern was frequently encountered in the high-grade subtypes, i.e., solid predominant adenocarcinoma and the cribriform variant of acinar predominant adenocarcinoma (p < 0.001), and was rarely observed in tumors containing a non-predominant lepidic component (p < 0.001). Furthermore, the altered staining pattern of MUC1 correlated with stage (p = 0.002), reduced overall survival (p = 0.031), and was associated with smoking (p < 0.001). When H1650 adenocarcinoma cells were exposed to cigarette smoke and analyzed by RT-qPCR and IEM, the levels of the MUC1 transcript and protein were elevated (p = 0.042). In conclusion, MUC1 participates in the pathogenesis of lung adenocarcinoma and associates with smoking both in vitro and in vivo. In lung adenocarcinoma, depolarized MUC1 protein expression correlated with histological growth patterns, stage, and patient outcome.

Improving Nurses' Knowledge About Older Adults With Cancer.

PURPOSE/OBJECTIVES: To assess nurses' knowledge, attitudes, and perceptions of caring for older adults and to use that assessment data to develop a training program to improve skills in caring for older adults with cancer. 
. DESIGN: Survey of oncology nursing staff conducted pre- and posteducation regarding geriatric care.
. SETTING: City of Hope, a comprehensive cancer center in southern California.
. SAMPLE: 422 (baseline) and 375 (postintervention) nursing staff in adult care areas. 
. METHODS: The primary endpoint was the difference between baseline and postintervention knowledge. Secondary endpoints included differences in attitudes and perceptions of caring for older adults in an oncology setting. A two-sample t test was performed to compare the mean results between baseline and follow-up surveys.
. MAIN RESEARCH VARIABLES: Knowledge, attitudes, and perceptions of caring for older adults.
. FINDINGS: Survey comparisons from baseline to postintervention demonstrated statistically significant increases in nurses' knowledge of geriatric care after the implementation of an educational program targeted at oncology nurses. Nurses' attitudes remained the same pre- versus posteducation. A significant change reflecting a better perception was noted in the burden of behavioral problems; however, a worsening was noted in disagreements among staff; disagreements involving staff, patients, and families; and limited access to geriatric services. Both surveys highlighted the need to provide more education for staff about geriatric care issues and to make available more geriatric-specific resources. 
. CONCLUSIONS: Knowledge about caring for older adults is needed for oncology nurses, and a geriatric education program for oncology nurses can result in improved knowledge in a variety of domains. Surveying staff highlighted the positive attitude of nurses toward caring for older adults at the study institution. The use of this survey identified key issues facing older adults and ways to improve care.
. IMPLICATIONS FOR NURSING: Additional knowledge about caring for older adults for oncology nurses and assistive staff is needed to prepare for the increasing population of older adults with cancer. Continuous learning is key to professional development, and more research is needed on how to best continue to integrate knowledge of geriatric concepts into oncology care.

Community Health Workers as Support for Sickle Cell Care.

Community health workers are increasingly recognized as useful for improving health care and health outcomes for a variety of chronic conditions. Community health workers can provide social support, navigation of health systems and resources, and lay counseling. Social and cultural alignment of community health workers with the population they serve is an important aspect of community health worker intervention. Although community health worker interventions have been shown to improve patient-centered outcomes in underserved communities, these interventions have not been evaluated with sickle cell disease. Evidence from other disease areas suggests that community health worker intervention also would be effective for these patients. Sickle cell disease is complex, with a range of barriers to multifaceted care needs at the individual, family/friend, clinical organization, and community levels. Care delivery is complicated by disparities in health care: access, delivery, services, and cultural mismatches between providers and families. Current practices inadequately address or provide incomplete control of symptoms, especially pain, resulting in decreased quality of life and high medical expense. The authors propose that care and care outcomes for people with sickle cell disease could be improved through community health worker case management, social support, and health system navigation. This paper outlines implementation strategies in current use to test community health workers for sickle cell disease management in a variety of settings. National medical and advocacy efforts to develop the community health workforce for sickle cell disease management may enhance the progress and development of "best practices" for this area of community-based care.

On the Scene: Developing a Nurse Care Coordinator Role at City of Hope.

We describe the development of an oncology solid tumor disease-focused care coordination model. Consistent with our strategic plan to provide patient- and family-centered care and to organize care around disease management teams, we developed the role of nurse care coordinator as an integral team member in our care delivery model. Managing a defined high-risk patient population across the care trajectory, these nurses provide stable points of contact and continuity for patients and families as they navigate the complex treatments and systems required to deliver cancer care. We describe role delineation and staffing models; role clarity between the role of the nurse care coordinator and the case manager; core curriculum development; the use of workflow management tools to support the touch points of the patient and members of the care team; and the incorporation of electronic medical records and data streams to inform the care delivery model. We identify measures that we will use to evaluate the success of our program.

Self-efficacy and readiness for transition from pediatric to adult care in sickle cell disease.

BACKGROUND: Theories of self-care management, particularly the development of self-efficacy or confidence in one's ability to manage health-related goals, tasks, and challenges may provide a useful framework for developing programs to improve transition from pediatric to adult care for youth and young adults with sickle cell disease (SCD). OBJECTIVE: The aim of this study was to evaluate the hypothesis stating that ratings of self-efficacy is positively associated with self-ratings of transition readiness. SUBJECTS: A total of 113 individuals with SCD aged 14-26 years at two distinct sites of care were recruited for the study. MATERIALS AND METHODS: Participants completed the Transition Intervention Program Readiness for Transition (TIP-RFT) assessment, the Sickle Cell Self-Efficacy Scale and the Sickle Cell Stress -Adolescent scale. RESULTS: In multivariate regression models, self-efficacy was positively associated with scores on the total TIP-RFT and on the Education/Vocation Planning and Independent Living Skills scales. Older age was independently associated with higher scores on the Independent Living Skills scale and higher stress levels were independently associated with lower scores on Education/Vocation Planning scale. CONCLUSION: The TIP-RFT assessment, along with measures of self-efficacy and stress, appear to be useful measures of overall transition readiness for youth and young adults with SCD. Future studies should evaluate whether self-management skill development and health outcomes are indeed affected by programs to improve readiness for transition from pediatric to adult care.

Development of a sickle cell disease readiness for transition assessment.

BACKGROUND: Instrumentation with established reliability and validity is not yet routinely utilized to assess readiness for transition from pediatric to adult care for youth and young adults with chronic conditions, including sickle cell disease (SCD). OBJECTIVE: The aim of this study was to develop a SCD specific readiness for transition assessment tool. SUBJECTS: Fifty-seven youths with SCD, ages 15-21 years, completed the initial version of the Transition Intervention Program - Readiness for Transition (TIP-RFT) assessment; 113 youths/young adults with SCD, ages 14-26 years, at two distinct sites of care completed a refined version of the TIP-RFT. METHODS: The TIP-RFT was constructed based on a literature review, provider and patient consensus and assessed domains including knowledge and skills in medical self-care, social support, health benefits and independent living and educational/vocational skills. We used principal components factor analysis to evaluate TIP-RFT responses and assessed differences in TIP-RFT scores in relation to age, gender, sickle cell diagnosis and site of care. RESULTS: The original TIP-RFT, which had demonstrated face validity, was reduced from 56 to 22 items. The revised instrument consisting of four subscales demonstrated good internal consistency reliability and construct validity. CONCLUSION: Our results support that the TIP-RFT is a valid and reliable tool for the assessment of transition readiness for youths with SCD. The TIP-RFT assessment can guide interventions to improve transition readiness and can provide a foundation for future research on other variables that might be associated with transition readiness.