Adherence to caregiver-administered intravenous immunosuppressant medications in pediatric hematopoietic stem cell transplant.

BACKGROUND: The purpose of this study was to describe taking, timing, and dosing adherence to home caregiver-administered intravenous (IV) immunosuppressants in a sample of pediatric hematopoietic stem cell transplant (HCT) recipients. PROCEDURES: Sixteen children who had undergone HCT, ages 3 months to 15 years, and their caregivers participated. All caregivers were biological mothers. Caregivers completed a demographic questionnaire as part of a larger study and brought in portable infusion pumps to download the pump data at the time of their child's post-HCT clinic visit. Pump data were then examined for dose taking, timing, and amount for 30 days following discharge. RESULTS: Despite the importance of the precise timing of IV immunosuppressants, adherence taking, dosing, and timing varied widely in this sample. The mean percentage of doses administered was 98.72%, and 81.3% of children received all doses of immunosuppressant. However, only 62% of doses were given on time and the mean difference between the prescribed and actual administration time was 67.03 minutes. CONCLUSIONS: Although taking adherence was high, the timing and dosing adherence to IV immunosuppressants in the home was poor. Additional support to promote adherence should be provided including assisting caregivers to identify and use adherence strategies specific to their child's IV immunosuppressant regimen in the home.

Nutritional Status of Allogeneic Hematopoietic Stem Cell Transplant Recipients and Post-transplant Outcomes.

This study investigated the relationship between nutritional status of hematopoietic stem cell transplant (HSCT) recipients pre-/post-transplant and outcomes post-transplant. A secondary data analysis was conducted of 18 patients 2-weeks pre-transplant and 3 weeks post-transplant. Nutrients/food servings analyzed from 24-dietary recalls were scored for diet quality, antioxidant status, and energy adequacy (≥75% of recommended targets). Patient outcomes included frequency/severity of gastrointestinal (GI) symptoms, mucositis, % weight change, acute graft vs. host disease (aGVHD), length of stay (LOS), hospital readmission, intensive care unit (ICU) admission, and plasma albumin and cytokine levels. Pre-transplant, patients consumed more calories, total and saturated fat (% kcals) and less carbohydrate (% kcals) vs. post-transplant. Higher vs. lower pre-transplant diet quality was related to positive weight change (p <. 05), and greater interleukin-10 (p <. 05). Energy inadequacy pre-transplant was related to more aGVHD post-transplant (p < 0.05). Post-transplant, higher diet quality was related to greater plasma albumin (p <. 05), shorter LOS (p <. 05), no ICU admissions (p <. 01), and more GI symptoms (p <. 05); higher antioxidant status was related to greater albumin (p <. 05); and energy adequacy was related to shorter LOS (p <. 05). Optimizing dietary quality, antioxidant status and energy adequacy pre-/post -transport are important considerations to improve patient outcomes after HSCT.

Pain, depressive symptoms, and health-related quality of life among survivors of pediatric hematopoietic stem cell transplant.

OBJECTIVE: Pediatric hematopoietic stem cell transplant (HCT) is an intensive medical procedure associated with significant late effects, of which pain is a prominent example. While pain is associated with increased depressive symptoms and health-related quality-of-life (HRQoL) impairments in other pediatric chronic illness populations, associations between these variables are not well understood in pediatric HCT. Clarifying these associations may inform clinical interventions to improve health outcomes following pediatric HCT. This study aimed to investigate the relations between pain intensity, depressive symptoms, and HRQoL in survivors of pediatric HCT. METHOD: Fifty-one survivors of pediatric HCT (Mage  = 14.3 years, standard deviation [SD] = 4.3; 58.8% male; 80.4% White) completed self-report measures of pain intensity, depressive symptoms, and HRQoL. Demographic and disease information was collected via demographic forms and medical record review. Path analysis was used to examine hypothesized associations between pain intensity, depressive symptoms, and HRQoL. RESULTS: Analyses revealed direct effects of pain intensity on depressive symptoms (estimate [Est.] = .23, p < .001) and HRQoL (Est. = -.2, p = .04), and direct effects of depressive symptoms on HRQoL (Est. = -.68, p < .001). Depressive symptoms also mediated the relationship between pain intensity and HRQoL (Est. = -.16, p = .006). CONCLUSIONS: Greater pain intensity was associated directly with increased depressive symptoms and indirectly with HRQoL through depressive symptoms. Results of this study suggest that multitargeted cognitive behavioral interventions that address pain and depressive symptoms may improve HRQoL ratings in survivors of pediatric HCT.

Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer.

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.

Poor Adherence Is Associated with More Infections after Pediatric Hematopoietic Stem Cell Transplant.

We prospectively examined rates of outpatient oral medication adherence in children after hematopoietic stem cell transplant (post-HSCT). For 6 months after first discharge post-HSCT, 50 patients (aged 0 to 16 years) and their primary caregivers agreed to store 1 oral medication in an electronic pill bottle that date and time stamps each bottle opening. Demographics, disease, donor type, and prescribed post-HSCT medication regimen were collected via chart review. For each patient percent adherence was calculated by dividing the number of doses taken as indicated by the electronic pill bottle by the number of doses prescribed for the same time period. Average percent adherence ranged from 63% at 1 month after discharge to 57% at 6 months after discharge. For patients who received an allogeneic transplant, lower adherence was associated (P < .005) with higher infection rates, after controlling for age and time since transplant. No such relationship was observed for patients who received an autologous transplant. This study demonstrates that poor oral medication adherence is prevalent, persistent, and, for patients receiving an allogeneic transplant, associated with increased incidence of infections during the outpatient treatment period. This study highlights the need for further research examining factors that hinder medication adherence as well as monitoring, promoting, and intervening to maximize medication adherence throughout the HSCT course.

Medication Adherence in Hematopoietic Stem Cell Transplantation: A Review of the Literature.

Adherence to oral medications has been repeatedly shown to fall below the recommended 80% to 95% in pediatric and adult cancer populations. The purpose of this review is to report the state of the science about oral medication adherence during the acute phase of hematopoietic stem cell transplantation across the lifespan. An exhaustive search of the literature yielded 5 records for inclusion in the review. Two studies examined adherence in pediatrics, 2 in adults, and 1 included both pediatric and adult patients. Three studies were descriptive and 2 were interventional in design. The rate of adherence to oral medications ranged from 33% to 94.7%. Adherence decreased over time in all studies except in 1 pharmacist-led intervention study. Different methods were used to measure adherence, but most relied on self-report. Further research is needed in medication adherence in hematopoietic stem cell transplantation to better understand facilitators, barriers, and relationships to health outcomes.

Symptoms of Survivors of Pediatric Hematopoietic Stem Cell Transplant by Age, Sex, and Transplant Type.

Purpose: The purpose of this study was to describe symptoms experienced by survivors of pediatric hematopoietic stem cell transplant (HSCT), and demographic and treatment-factors associated with ongoing symptomology. Methods: Fifty pediatric survivors completed a cross-sectional pilot study. Questionnaires were administered online via REDCap to assess symptoms experienced in the last week. Survivors also consented to a medical record chart review. Results: Survivors were on average 5.4 years post-HSCT (range 1.1 to 9 years), male (58%), and Caucasian (80%) who received an allogeneic HSCT (92%). The most commonly reported symptoms were difficulty concentrating (42.5%), pain (38%), worry (38%), nervousness (37.5%), and lack of energy/fatigue (34%). Survivors reported up to 14 symptoms, with 90% of the sample experiencing at least one symptom in the previous week. Average number of symptoms varied by age group between 2.1 (8-9 years) and 6.8 (18 and older). Age and female gender were associated with higher levels of fatigue. Conclusions: The majority of survivors experienced at least one symptom in the previous week. Neuropsychological symptoms and pain endure well into survivorship that can influence outcomes such as function and health-related quality of life (HRQOL). Research is needed on biological mechanisms of ongoing symptomology, effective interventions to prevent or mitigate symptoms, and the impact of symptoms on patient outcomes including daily functioning and HRQOL. Implications Survivors of pediatric HSCT continued to experience symptoms for up to nine years. Survivors should be frequently screened for symptoms, as symptoms may affect function, learning/employment outcomes, and HRQOL.

Facilitators and Barriers to Self-Management for Adolescents and Young Adults Following a Hematopoietic Stem Cell Transplant [Formula: see text].

Adolescents and young adults who experience hematopoietic stem cell transplant are at risk for self-management difficulties based on development, psychological comorbidities, and the complexity of the care regimen. Recommendations for practice change were designed to address facilitators and barriers to self-management for adolescents and young adults following hematopoietic stem cell transplant. As part of a grounded theory research study, 30 participants (17 adolescents and young adults and 13 of their caregivers) were individually interviewed and asked about facilitators and barriers to managing care and advice for health care providers. Participant responses were coded into categories, which were named with terms used by the participants. The number of participants who provided data per category was recorded. Self-management is generally characterized only in the ability to follow a prescribed care regimen. Participants indicated mental and emotional experiences as a result of treatment were indistinguishable from self-management activities. Facilitators included having a positive attitude, social support, organization, motivation, and information. Barriers included physical and psychological symptoms, isolation, difficulties with the medication regimen, single parenting, and having a bad attitude. Advice for health care providers included communicating effectively, treating patients holistically, and providing social support.

Follow the Yellow Brick Road: Self-management by Adolescents and Young Adults After a Stem Cell Transplant.

BACKGROUND: Stem cell transplant (SCT) is a major life event that can have long-term psychosocial consequences for the entire family. It is unknown the degree to which the psychosocial characteristics associated with SCT influence self-management behaviors and health outcomes in adolescents and young adults (AYAs). OBJECTIVE: The study had the following aims: (1) to describe how AYAs manage their care regimen post-SCT and (2) to explore self-management facilitators, barriers, processes, and behaviors within individual, family, community, and healthcare system domains. INTERVENTIONS/METHODS: A grounded theory study was conducted to understand the process AYAs use to manage their care after SCT. Semistructured individual interviews were conducted, digitally recorded, and transcribed verbatim. Data were coded to consensus and analyzed using constant comparison methods. RESULTS: A sample of 17 AYAs (13-25 years old at transplant) and 13 caregivers (dyads) participated in the study. Initially, the participants experienced a tornado of activities, information, and emotions. Support from family, friends, and healthcare providers empowered families to manage their care, maintain a positive attitude, and approach a "normal" life. CONCLUSIONS: Monotony, managing symptoms, and isolation were the hardest obstacles for AYAs throughout the process. Families discussed managing their care activities by developing routines that got easier with time. IMPLICATIONS FOR PRACTICE: Nurses play an instrumental role in AYA self-management practices by providing information, education, and social support. Psychosocial issues were prominent in the self-management process and should be addressed in future research and interventions with AYAs and caregivers.

The Practices and Meanings of Care for Nurses Working on a Pediatric Bone Marrow Transplant Unit.

Bone marrow transplant (BMT) units are stressful work environments with high staff burnout, anxiety, and turnover. A qualitative study was undertaken to better understand care for nurses within the context of their clinical practice on a pediatric BMT unit. Understanding care practices for BMT nurses will allow us to design interventions and provide appropriate support for this subspecialty of nurses. Focus groups were held with 24 nurses as key participants, and 2 focus groups with general participants: unit management (N = 2) and caregivers of inpatients (N = 7). Data were analyzed using a thematic analysis. Data were transcribed verbatim and coded to consensus by members of the research team. Five themes emerged from the data: ( a) experiencing stressful situations that impede care, ( b) growing and developing personally and professionally, ( c) providing trustworthy and respectful care, ( d) acquiring meaningful coping skills, and ( e) sharing with others versus isolation. Stress management, professional development, and interdisciplinary communication were areas that emerged for potential intervention.

Reducing Parental Uncertainty Around Childhood Cancer: Implementation Decisions and Design Trade-Offs in Developing an Electronic Health Record-Linked Mobile App.

BACKGROUND: Parents of children newly diagnosed with cancer are confronted with multiple stressors that place them at risk for significant psychological distress. One strategy that has been shown to help reduce uncertainty is the provision of basic information; however, families of newly diagnosed cancer patients are often bombarded with educational material. Technology has the potential to help families manage their informational needs and move towards normalization. OBJECTIVE: The aim of this study was to create a mobile app that pulls together data from both the electronic health record (EHR) and vetted external information resources to provide tailored information to parents of newly diagnosed children as one method to reduce the uncertainty around their child's illness. This app was developed to be used by families in a National Institutes of Health (NIH)-funded randomized controlled trial (RCT) aimed at decreasing uncertainty and the subsequent psychological distress. METHODS: A 2-phase qualitative study was conducted to elicit the features and content of the mobile app based on the needs and experience of parents of children newly diagnosed with cancer and their providers. Example functions include the ability to view laboratory results, look up appointments, and to access educational material. Educational material was obtained from databases maintained by the National Cancer Institute (NCI) as well as from groups like the Children's Oncology Group (COG) and care teams within Cincinnati Children's Hospital Medical Center (CCHMC). The use of EHR-based Web services was explored to allow data like laboratory results to be retrieved in real-time. RESULTS: The ethnographic design process resulted in a framework that divided the content of the mobile app into the following 4 sections: (1) information about the patient's current treatment and other data from the EHR; (2) educational background material; (3) a calendar to view upcoming appointments at their medical center; and (4) a section where participants in the RCT document the study data. Integration with the NCI databases was straightforward; however, accessing the EHR Web services posed a challenge, though the roadblocks were not technical in nature. The lack of a formal, end-to-end institutional process for requesting Web service access and a mechanism to shepherd the request through all stages of implementation proved to be the biggest barrier. CONCLUSIONS: We successfully deployed a mobile app with a custom user interface that can integrate with the EHR to retrieve laboratory results and appointment information using vendor-provided Web services. Developers should expect to face hurdles when integrating with the EHR, but many of them can be addressed with frequent communication and thorough documentation. Executive sponsorship is also a key factor for success. TRIAL REGISTRATION: ClinicalTrials.gov NCT02505165; https://clinicaltrials.gov/ct2/show/NCT02505165 (Archived by WebCite at http://www.Webcitation.org/6r9ZSUgoT).

Designing Technology to Address Parent Uncertainty in Childhood Cancer.

The stress and uncertainty created by a child's cancer diagnosis and treatment can affect parent and child functioning. Health technology provides a potential avenue for intervention delivery. Interviews were conducted with parents of children diagnosed with cancer to discover their needs following diagnosis and design a relevant mobile application. Treatment experience was the overarching theme. Subthemes included the emotional response, use of information, and environmental factors. Technology was used primarily to seek out information and communicate with others. Health technologies are gaining popularity and have the potential to be beneficial for patients and families throughout the treatment experience.

Development of a regional nursing research partnership for academic and practice collaborations.

Background. Collaborative nursing research across academic and practice settings is imperative to generate knowledge to improve patient care. Models of academic/practice partnerships for nursing research are lacking. This paper reports data collected before and during a one-day retreat for nurse researchers and administrators from local universities and health care organizations designed to establish a regional nursing research partnership. Methods. Quantitative and qualitative methods were used to address the study aims: (1) to assess research involvement and institutional research resources; (2) to assess interest in and concerns regarding cross-institutional collaborations; and (3) to describe perceptions of the purpose of a partnership and resources needed to ensure success. Results. Participants (n = 49) had differing perceptions of accessibility to resources; participants in practice settings reported less accessibility to resources, notably grant development, informatics, and research assistant support. Participants were interested in collaboration although concerns about conflict of interest were expressed. Four themes related to partnering were identified: harnessing our nursing voice and identity; developing as researchers; staying connected; and positioning for a collaborative project. Conclusion. Academic-practice research collaborations will become increasingly important with health care system changes. Strategies to develop and sustain productive partnerships should be supported.