Engaging hematopoietic cell transplantation patients and caregivers in the design of print and mobile application individualized survivorship care plan tools.

PURPOSE: INSPIRE (INteractive Survivorship Program with Information and REsources) is an online health program that includes a mobile app, website, health action plan, and individualized survivorship care plans for adult hematopoietic cell transplant (HCT) survivors. The INSPIRE program integrates two previously effective randomized control trials that tested an internet-based program and patient-centered survivorship care plans for HCT survivors. METHODS: Three focus groups were conducted with a total of 22 participants (20 patients, 2 caregivers/patient advocates) to explore patient and caregiver preferences and to optimize the patient-centered emphasis of INSPIRE. Adult (age > 18 years at the time of study entry) HCT recipients had to be at least 1-year post-HCT to participate; caregivers/patient advocates were also eligible. Participants had to be able to communicate in English, could have any diagnosis, transplant type, or donor source, and could have had multiple transplants. RESULTS: All patient participants received an allogeneic HCT; average time since HCT was 8 years (range 2-22 years). The majority of participants were female (77.3%). Overall, the tools were well received by participants in this study, particularly the personalized features of all the tools. Major themes included interest in having the ability to tailor features to individual needs, and an interest in tracking information over time. DISCUSSION: Engaging patients and caregivers is invaluable to optimize tools designed to improve HCT survivorship care. Print, online, and mobile-based tools, tailored to individual patients' treatment history and requisite follow-up care, can provide otherwise unavailable expertise and guidelines for care.

Effects of cultural cues on perceptions of HPV vaccination messages among parents and guardians of American Indian youth.

The encouragement of human papillomavirus (HPV) vaccination is an important goal for interventions among American Indians (AIs), given the significant disparities AIs face with respect to HPV cancers. Tailoring intervention messages to the culture of message recipients has been proposed as a potentially useful intervention approach, yet cultural tailoring of HPV messages has never been tested among AIs. The objective of this research was to test the effectiveness of cultural tailoring in positively affecting two variables that have been proposed as mechanisms of tailoring effects, namely identification with the message and perceptions of message effectiveness. We conducted a between subjects randomized experiment among 300 parents of AI children. Participants saw one of three messages that differed in the extent to which the message contained cues to AI culture. Analysis of variance (anova) showed that participants identified more strongly (partial eta2 = 0.10) with messages that included stronger AI cultural features and thought these messages were more convincing (partial eta2 = 0.14) and pleasant (partial eta2 = 0.11) compared to messages that included weaker cultural cues. Effects on message identification and convincingness were moderated by AI identity, such that the more participants identified themselves with AI culture, the stronger the effects of the culturally-tailored messages were (R2change = 0.043 and 0.020 in hierarchical regression analyses). These findings suggest good potential for cultural tailoring to encourage HPV vaccination among AIs.

Applying implementation science in the field of transplant and cellular therapy.

Implementation science (IS) is a systematic way to approach the broader adoption of evidence-based practices and has as its goal to understand and address the gap between research and practice, ensuring that research findings are effectively translated into practice and policy to improve health outcomes and service. We describe the various facets of IS and their relevance to the field of hematopoietic cell transplantation and cellular therapy (HCT/CT) with an emphasis on health equity, community engagement, and systems approach. We also review the similarities and differences among clinical research, quality improvement, and implementation science. Additionally, we describe how CIBMTR applies IS across various phases: dissemination, analyzing current practices, and developing implementation intervention strategies. This includes designing studies and evaluation, scaling up operations, and ensuring sustainability. Lastly, we discuss further applications of IS in HCT/CT including the application to prospective research studies, collaboration across the field, and standardization and adoption of best practices. The application of IS in HCT/CT is pivotal to bringing research benefits directly to all patients. Through partnership, open-mindedness, and a commitment to evidence-based practice, we can collectively ensure the greatest impact of research on improving patient outcomes following HCT/CT.

Reducing barriers of access and care related to hematopoietic cell transplantation and cellular therapy: The mission-driven role of the national marrow donor program.

The treatment of malignant and nonmalignant hematologic disorders continues to benefit from significant scientific advancement and progress in the use of hematopoietic cell transplantation and cellular therapies. However, barriers associated with receiving these lifesaving treatments and care remain, which necessitate innovative approaches to overcome, so all persons in need can receive these therapies. This article reviews barriers to receiving hematopoietic cell transplantation and cellular therapies, and highlights novel approaches taken by the National Marrow Donor Program in reducing barriers for all patients in need.

Application and Evaluation of Survivorship Care Guides for Hematopoietic Cell Transplantation Recipients.

Hematopoietic cell transplantation (HCT) is a treatment for hematologic malignancies and disorders. Patients who receive HCT can face long-term physical and psychosocial effects. Survivorship care guides (care guides), which describe screening and preventive care practices were mailed to allogenic HCT recipients at clinically important timepoints (6, 12, and 24 months after HCT). The primary objective of this study was to evaluate how patients perceived and used the care guides. A cross-sectional, time-series survey was sent to all National Marrow Donor Program/Be The Match allogeneic HCT recipients from September 2012 to November 2016 after the care guides were sent; patients or caregivers could respond. Respondents who returned all 3 surveys were included (554 patients; 65 caregivers), for an overall response rate of 13% (maintenance rate of 45%). The majority of patients and caregivers strongly agreed or agreed that the care guides helped them understand that post-HCT care is important to staying healthy and that they were more familiar with recommended tests at check-up appointments. Most patients who did not share the care guides with their doctors at any of the timepoints believed their doctor knew which tests were needed. Results from this study can help inform and guide development of future tools and evaluations of educational resources for patients after HCT. Tools and educational resources, such as survivorship care guides, have the potential to help empower patients to be more knowledgeable and to understand and advocate for their survivorship care needs.

Feasibility of a Systems Approach to Treat Commercial Tobacco Dependence within American Indian Health Clinics.

American Indians and Alaska Natives (AI/ANs) have the highest smoking prevalence, smoking-related disease, and mortality rates of any racial or ethnic group. Three AI health clinics in Minnesota implemented an evidence-based tobacco dependence treatment intervention that included provider education and customized clinical system tools. A baseline assessment of each clinic facility guided the focus of the intervention and tailored the clinical system tools. Clinic staff were assessed with pre/post-training evaluations and annual assessments. Results indicated self-reported improvements in the rate of identifying smoking status (57% to 89%), documenting smoking status (from 60% to 80%), and providing evidence-based treatments such as pharmacotherapy (from 36% to 78%).