Costs and Outcomes with Once-Daily versus Every-6-Hour Intravenous Busulfan in Allogeneic Hematopoietic Cell Transplantation.

The high cost of healthcare in the United States has not been consistently associated with improved health outcomes or quality of care, necessitating a focus on value-based care. We identified busulfan dosing frequency during allogeneic hematopoietic cell transplantation (HCT) conditioning as a potential target for optimization. To improve patient convenience and to decrease the cost of busulfan-based conditioning regimens, our institution changed busulfan dose frequency from every 6 hours (q6h) to once-daily (q24h). We compared costs and patient outcomes between these 2 dosing schedules. In June 2017, our institution transitioned from q6h to q24h busulfan dosing. We compared patients who received busulfan/cyclophosphamide conditioning regimens (BU/CY) for allogeneic HCT in the year before the dosing change (q6h cohort) and those who did so in the year after the dosing change (q24h cohort). The primary outcomes were differences in cost, day +90 mortality, and day +90 relapse. Between June 1, 2016, and June 1, 2018, 104 patients (median age 49 years; range, 20 to 63 years) received BU/CY before allogeneic HCT. Fifty-nine patients (57%) received q6h busulfan and 45 (43%) received q24h busulfan. There were fewer men in the q24h busulfan cohort compared with the q6h busulfan cohort (42% versus 64%; P = .024), but there were no other significant differences between the groups. There was an average annual cost savings of $19,990 per patient with q24h busulfan compared with q6h busulfan, and an annual busulfan cost savings of $899,550. There was a significantly lower day +90 mortality in the q24h busulfan cohort compared to the q6h busulfan cohort (0% versus 10%; P = .028). There were no significant differences in relapse at day +90 or in hospital length of stay. Our data indicate that i.v. busulfan dosing for allogeneic HCT conditioning is a target for improved value-based care. At our institution, patients who received q24h busulfan dosing had similar or superior outcomes compared with those receiving q6h dosing, with an average annual cost reduction of $19,990 per patient and an overall annual reduction in busulfan cost of approximately $900,000. These data support the adoption of q24h i.v. busulfan dosing as a standard of care to improve value-based care in allogeneic HCT.

Long-term implications of autologous HCT for caregiver quality of life: how does the survivor's health matter?

INTRODUCTION: This study examines caregiver quality of life (CQOL) 3-26 years after autologous hematopoietic cell transplantation (HCT) for patients with lymphoma. Using a framework that views the patient-caregiver dyad as a system of mutual influence, we argue that CQOL is associated with survivor functional health status and sense of personal control. METHODS: Ninety-nine autologous HCT survivor-caregiver dyads participated. CQOL was measured using the Caregiver Quality of Life Scale-Cancer. Survivor functional health status was assessed using the Functional Assessment of Cancer Therapy-General. Sense of control was examined using an instrument from the MIDUS II study. Clinical measures were collected from medical records. RESULTS: After controlling for sociodemographic and clinical covariates, caregivers with higher sense of control had higher CQOL. Poorer survivor functional health was associated with lower CQOL but only when the survivor reported low personal control. When the survivor reported high personal control, functional health was not a factor. Lower CQOL was observed for younger and more educated caregivers. In contrast, more education among survivors was linked to higher CQOL. CONCLUSION: These results (1) support using a mutuality framework for the study of long-term outcomes of caregivers, (2) suggest the importance of ongoing support for caregivers, and (3) help identify caregivers at risk for poorer adaptation. Poorer survivor functional health is a risk factor, but its adverse implications can be offset by higher caregiver and survivor sense of control, a psychological resource aiding caregiver adaptation. These findings can inform the development of support programs for long-term caregivers.

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.

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report.

In 2015, the National Institutes of Health convened six working groups to address the research needs and best practices for late effects of hematopoietic stem cell transplantation survivors. The Patient-Centered Outcomes Working Group, charged with summarizing the HRQOL evidence base, used a scoping review approach to efficiently survey the large body of literature in adult and pediatric HCT survivors over 1 year after transplantation. The goals of this paper are to (1) summarize the current literature describing patient-centered outcomes in survivors, including the various dimensions of health-related quality of life affected by HCT, and describe interventions tested to improve these outcomes; (2) highlight areas with sufficient evidence allowing for integration into standard practice; (3) address methodological issues that restrict progress in this field; (4) identify major gaps to guide future research; and (5) specify priority research recommendations. Patient-centered outcomes were summarized within physical, psychological, social, and environmental domains, as well as for adherence to treatment, and health behaviors. Interventions to improve outcomes were evaluated for evidence of efficacy, although few interventions have been tested in long-term HCT survivors. Methodologic issues defined included lack of consistency in the selection of patient-centered outcome measures, along with the absence of a standard for timing, frequency, and mode of administration. Recommendations for HCT survivorship care included integration of annual screening of patient-centered outcomes, use of evidence-based practice guidelines, and provision of treatment summaries and survivorship care plans after HCT. Three priority research recommendations included the following: (1) design and test risk-targeted interventions with dose-intensity modulation matching the needs of HCT survivors with priority domains, including sexual dysfunction, fatigue, sleep disruption, nonadherence to medications and recommended health care, health behaviors including physical inactivity and healthy eating, and psychological dysfunction, with particular consideration of novel technologies to reach HCT survivors distant from their transplantation centers; (2) design a consensus-based methodologic framework for outcomes evaluation; and (3) evaluate and compare existing practices for integrating patient-centered outcome screening and interventions across HCT survivorship programs.

Exploring long-term cancer survivors' experiences in the career and financial domains: Interviews with hematopoietic stem cell transplantation recipients.

Using semi-structured interviews with 50 hematopoietic stem cell transplantation (HSCT) recipients who were 2 to 22 years post-transplant, this study investigates cancer survivors' interpretations of their economic and work-related experiences during and after treatment. Survivors described a variety of challenges in these areas, including job insecurity, discrimination, career derailment, the lack of career direction, delayed goals, financial losses, insurance difficulties, constraints on job mobility, and physical/mental limitations. Survivors described the ways these challenges were offset by external factors that helped them to navigate these difficulties and buffered the negative financial and career-related impacts. Good health insurance, favorable job characteristics, job accommodations, and financial buffers were prominent offsetting factors. Most survivors, however, were also forced to rely on individual behavioral and interpretative strategies to cope with challenges. Behavioral strategies included purposeful job moves, retraining, striving harder, and retiring. Some strategies were potentially problematic, such as acquiring large debt. Interpretive strategies included reprioritizing and value shifts, downplaying the magnitude of cancer impact on one's life, denying the causal role of cancer in negative events, making favorable social comparisons, and benefit finding. Post-treatment counseling and support services may assist survivors in identifying available resources and useful strategies to improve long-term adaptation in the career and financial realms.

Intensive Care Utilization for Hematopoietic Cell Transplant Recipients.

Blood and marrow transplantation (BMT) is a potentially curative therapy for a number of malignant and nonmalignant diseases. Multiple variables, including age, comorbid conditions, disease, disease stage, prior therapies, degree of donor-recipient matching, type of transplantation, and dose intensity of the preparative regimen, affect both morbidity and mortality. Despite tremendous gains in supportive care, BMT remains a high-risk medical therapy. A critically ill BMT recipient may require transfer to an intensive care unit (ICU) and the specialized medical and nursing care that can be provided, such as mechanical ventilation and vasopressor support. Mortality for BMT recipients requiring care in an ICU is high. This paper will describe the experience of the Stanford Blood and Marrow Transplant Program in developing and implementing guidelines to maximize the benefit of intensive care for critically ill BMT recipients.

Sexuality: a quality-of-life issue for cancer survivors.

OBJECTIVES: To provide an overview of the broad, multidimensional construct of sexuality addressing physiologic, psychological, and social dimensions. DATA SOURCES: Research articles, abstracts, standards of care, international reports. CONCLUSION: Multiple insults to the physiologic, psychological, and social dimensions of sexuality can occur following the diagnosis and treatment of cancer. The incidence of altered sexuality in cancer survivors is high, long lasting, and can diminish the quality of life of both the cancer survivor and the sexual partner. Additional research is needed to address these alterations. IMPLICATIONS FOR NURSING PRACTICE: Nurses and other health care professions can begin to help cancer survivors adapt to changes in sexuality related to cancer and cancer treatment by initiating a discussion of sexuality at the time of diagnosis and throughout the trajectory of disease.

Long-term implications of cancer for work and financial wellbeing: Evidence from autologous hematopoietic cell transplantation (HCT) survivors.

OBJECTIVE: Little is known about how long-term cancer survivors adapt in the realm of work and finances, and whether there are differences in these adaptations based on overall health status. We hypothesize that survivors with better health-related quality of life (HQL) have better work and financial outcomes. STUDY DESIGN: Cross-sectional study with 200 adult recipients of autologous hematopoietic cell transplantation (HCT) 3-26 years after transplant using self-administered questionnaires and medical records extraction. MAIN OUTCOME MEASURES: Questionnaires assessed work status, financial satisfaction, and perceived improvements in financial status since transplant. RESULTS: Nearly half the survivors were employed (37.2% full-time, 8.7% part-time); 37.2% had retired. Higher scores on the functional HQL were linked to a lower relative risk of having retired (RRR 0.85, CI 0.75-0.98) and of being neither in the workforce nor retired (RRR 0.84, CI 0.72-0.99) compared with working full-time. Higher functional HQL also related to higher financial satisfaction (b 0.06, CI 0.01-0.10) and increased odds of perceived improvements in one's financial situation since transplant (OR 1.15, CI 1.04-1.17). Patients receiving HCT at age ≥60 were more likely than counterparts receiving HCT at age 18-39 to work part-time (RRR 18.24, 95% CI 1.19-280.24) and to have retired (Model 1 RRR 579.14, 95% CI 49.53-6771.54) than to be working full-time. CONCLUSIONS: Survivors with poorer HQL may be at risk for overall poorer work and financial adaptation. Interventions targeting this group and specifically focusing on re-integration into the world of paid work should be considered.

Sexuality, Menopausal Symptoms, and Quality of Life in Premenopausal Women in the First Year Following Hematopoietic Cell Transplantation.

PURPOSE/OBJECTIVES: To describe sexuality, menopausal symptoms, and quality of life (QOL) in premenopausal women in the first year following hematopoietic cell transplantation (HCT)
. DESIGN: One-year prospective longitudinal study. SETTING: Stanford University Medical Center in California.
. SAMPLE: 63 premenopausal female recipients of HCT with a mean age of 34.5 years. METHODS: Three instruments were used. MAIN RESEARCH VARIABLES: Sexuality, menopausal symptoms, and QOL
. FINDINGS: At one year post-HCT, women reported absent to low desire and arousal, adequate lubrication less than half of the time, absent or rare orgasm, pain during vaginal penetration more than half the time, and dissatisfaction with overall sex life. Women also reported moderate to severe vasomotor symptoms, including hot flashes, night sweats, and sweating. Twenty-one women were avoiding sexual activity, and 25 women were not sexually active. Mean QOL scores significantly increased (p = 0.028) in the first year, signifying an improvement in QOL. Variables predictive of improved QOL at one year post-HCT include decreased psychosocial and physical symptoms, sexual satisfaction, and pre-HCT QOL score
. CONCLUSIONS: One year post-HCT, women reported sexual dysfunction, sexual dissatisfaction, and menopausal symptoms, which negatively affect QOL. IMPLICATIONS FOR NURSING: Nurses and other healthcare providers working with recipients of HCT can provide anticipatory guidance on potential changes in sexuality and menopausal symptoms to facilitate adaptation by reducing discordance between expectations and new realities
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Sexuality following hematopoietic cell transplantation.

Hematopoietic cell transplantation (HCT) is a therapeutic modality used to treat a variety of malignant and nonmalignant disorders. Because HCT often involves the use of high-dose radiation and chemotherapy, it is associated with numerous toxicities and effects, including changes in sexuality and sexual functioning. These changes may include decreased libido, erectile and ejaculatory dysfunction, premature menopause, vaginal alterations, dyspareunia, and infertility. Psychosocial factors, such as anxiety, depression, and concurrent life stressors, also may affect sexuality and sexual functioning. Healthcare providers caring for patients undergoing HCT need to initiate discussions about the impact of HCT on sexuality pretransplant and continue those discussions throughout and following the treatment process.

Palliative care of hematopoietic cell transplant recipients and families.

OBJECTIVES: To provide support for the early integration of palliative care into the care of hematopoietic cell transplant (HCT) recipients and families with the goal of improving care. DATA SOURCES: Journal articles and on-line databases. CONCLUSION: Early integration of palliative care for HCT recipients at high risk for complex symptom clusters, non-relapse mortality, or relapse offers an opportunity to clarify goals of care, advanced care planning, and improving the quality of care for both recipients and families. IMPLICATIONS FOR NURSING PRACTICE: The palliative care service can support the HCT nurse in providing complex care to HCT recipients who are faced with significant side effects, toxicities, and complications of transplant.

Mobilization of hematopoietic stem cells for use in autologous transplantation.

Autologous hematopoietic stem cell transplantation (HSCT) is a potentially curative therapeutic approach for various malignant hematologic and lymphoid diseases. Hematopoietic stem cells (HSCs) may be collected from the blood or the bone marrow. HSCs are capable of self-renewal and give rise to progenitor cells, multipotent cells that differentiate and proliferate into the mature cells of the blood and immune system. HSCs and progenitor cells are released from the bone marrow into the peripheral blood through a process called mobilization. HSCs then are collected from the blood in a process called apheresis and cryopreserved for administration following the high-dose preparative regimen. This article reviews stem cell biology, current mobilization strategies, use of novel mobilization agents, and nursing care of patients during the mobilization phase of autologous HSCT. Understanding the biology and process of HSC mobilization is critical for transplantation nurses to deliver and coordinate care during this complex phase of autologous HSCT.

Hematopoietic stem cell transplantation nursing: a practice variation study.

PURPOSE/OBJECTIVES: To examine practice variation in hematopoietic stem cell transplantation (HSCT) nursing and to identify the gap between recommended standards of practice and actual practice across settings. Additional practices relevant to HSCT nursing also were explored. RESEARCH APPROACH: Cross-sectional, descriptive survey. SETTING: National and international cancer centers. PARTICIPANTS: A convenience sample was obtained from the 2006 Oncology Nursing Society Blood and Marrow Stem Cell Transplant Special Interest Group membership list (N = 205). Most participants were women (94%) with a median age of 45 years. The primary role was bedside nurse (46%), with an adult-only population (78%) in an academic (84%), inpatient (68%-88%) center. 39 (94%) U.S. states and 7 (6%) non-U.S. countries were represented. METHODOLOGIC APPROACH: Survey development was guided by Dillman Mail and Internet survey design. Electronic questionnaires were conducted with Zoomerang Market Tools. MAIN RESEARCH VARIABLES: Infection control practices across bone marrow transplantation settings. FINDINGS: Descriptive statistics revealed minimal practice variation regarding infection control across transplantation types or conditioning regimens. Practices regarding implementation of restrictions on patients' hygiene, diet, and social interactions varied by phase of transplantation, with the greatest variations occurring during the post-transplantation phase. Sixty-two percent of respondents reported using published guidelines; 72% reported using organization-specific policies. CONCLUSIONS: Although published standards are under consideration, practice variation exists across transplantation centers. Whether the variation is caused by a lack of compliance with published guidelines or by the poor delineation of details for providers to translate the guidelines into practice is not known. INTERPRETATION: Identifying gaps in the literature and inconsistencies in HSCT practices is an important first step in designing evidence-based projects that can be used to standardize practice and link best practices to improved patient outcomes.

Response shift: a theoretical exploration of quality of life following hematopoietic cell transplantation.

Quality of life (QOL) has become an important outcome measure for evaluating the impact of cancer therapy, especially aggressive cancer therapies such as hematopoietic cell transplantation (HCT). Despite the intense interest in examining the phenomenon of QOL, fundamental concerns remain. Most published QOL studies of HCT recipients do not state the theoretical model on which the investigation was designed. The absence of a theoretical foundation results in difficulties for healthcare professions to interpret the study's outcomes, generalize the findings and design and test theory-based interventions. Most HCT recipients report good to excellent QOL despite ongoing treatment-related sequela. This article explores the theoretical model of response shift as a means of understanding how HCT recipients maintain or improve their QOL after the treatment of life-threatening illness. Finally, a proposal for studying the QOL of HCT recipients based on the response shift model is offered, which includes a discussion of theory-based interventions.