Financial burden for caregivers of adolescents and young adults with cancer.

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Tracheostomy decision-making for children with medical complexity: What supports and resources do caregivers need?

OBJECTIVES: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children. METHODS: This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes. RESULTS: Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers. SIGNIFICANCE OF RESULTS: Caregivers' need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.

Developing pathways, a hope-enhancing intervention for metastatic lung cancer patients receiving cancer treatment.

OBJECTIVE: Between 40% and 65% of lung cancer patients report concern about maintaining valued activities and roles, yet few interventions address this concern. Hope, a patient's perceived ability to generate goals and identify ways to pursue them, may be a promising intervention target to support function among lung cancer patients. The goal of this study was to assess metastatic non-small cell lung cancer (mNSCLC) patient interest and preferences for a hope-enhancing intervention. METHODS: We conducted a sequential mixed-methods (survey followed by semi-structured interviews) study with patients with mNSCLC. Surveys assessed patient interest in, perceived helpfulness of, and preferences for a hope intervention. A subset of 12 patients (and caregivers, when present) completed semi-structured interviews to elicit feedback on proposed intervention content and procedures. RESULTS: Survey data from 60 patients (40% male; Mean age = 62.5; SD = 9.3) suggested high perceived importance of pursuing personal goals during cancer treatment, moderate perceived helpfulness in discussing personal goals, and preference for a nurse-led intervention. Based on these data, a 5-session, nurse-led intervention protocol was drafted and reviewed with 12 patients. Interviewed patients and caregivers agreed working towards goals was beneficial, liked the intervention concept, and thought prompts and rating scales on handouts would facilitate discussion. The majority preferred nurse delivery during infusions. CONCLUSIONS: A nurse-led hope-enhancing intervention delivered primarily during infusions may be acceptable to mNSCLC patients. Future work should test feasibility and identify ways to incorporate caregivers and oncology providers into hope interventions.

Gathering Trauma Narratives: A Qualitative Study on the Impact of Self-Identified Traumas on People Living with HIV (PLWH).

BACKGROUND Trauma-emotional, physical, and psychological-is common and associated with increased risk behaviors, low rates of care engagement and viral suppression, and overall poor health outcomes for people living with HIV (PLWH). This article presents the results of 15 in-depth, semi-structured interviews with PLWH in the Southeastern United States in which participants identified a trauma and described its long-lasting impact on their lives. Participants' trauma narratives described a wide range of traumas, including childhood sexual abuse, the loss of a loved one, and their HIV diagnosis.METHODS Systematic qualitative analysis was used to delineate beliefs about causes, symptoms, treatments, quality of life, and health implications of trauma.RESULTS: Fifteen participants completed semi-structured interviews that lasted on average 32 minutes. Participants described a wide spectrum of personal trauma that occurred both prior and subsequent to their HIV diagnosis. The types of trauma identified included physical, sexual, and psychological abuse inflicted by intimate partners, family members, and/or strangers.LIMITATIONS A chief limitation of this study is selection bias. Additionally, the participant selection and content of the trauma narratives might have been affected by the surrounding context of the parent study centered on HIV, aging, and psychosocial stress. It is also difficult to interpret the distinction between discrete trauma experiences and the diagnosis of HIV, leading to potential information bias.CONCLUSION This study highlights the importance of social support in coping with trauma and the effect of trauma on health-related behaviors. It also illustrates the need for additional research on the topic of trauma and trauma-informed care for PLWH. Understanding how different types of trauma affect individuals' lives is necessary to inform recommendations to provide better care for PLWH.

Perceived Benefits of Peer Support Groups for Stroke Survivors and Caregivers in Rural North Carolina.

BACKGROUND Significant geographical disparities exist in stroke prevalence among southeastern states, including North Carolina. Additionally, stroke is more prevalent in rural areas. Peer support groups play an important role in stroke recovery by providing tools for effective coping, alleviating psychological stress, and creating an outlet for stroke survivors and caregivers. However, their perceived benefits have not been clearly defined for rural stroke survivors and their families.METHODS This qualitative study describes the experiences of survivors and caregivers in rural North Carolina who have participated in stroke peer support groups. Four focus groups were conducted with 32 participants (average age 67 years, 72% female) in 4 rural North Carolina counties, using a semi-structured discussion guide and an inductive coding approach.RESULTS Thematic analysis revealed that participants in rural support groups seek and receive knowledge from their support groups and feel empowered by providing and receiving this knowledge. Shared experiences cultivate a sense of community, and participants viewed support outside of the support group as necessary to their recovery process.LIMITATIONS This study reflects the views of a small group of predominantly non-Hispanic, white stroke survivors and caregivers who voluntarily participated. We did not conduct separate focus groups with survivors and caregivers.CONCLUSION Peer support groups are a sparse, but critical resource for rural stroke survivors and caregivers because they provide information and community that can assist with recovery to health and independence.

Caregiver Perceptions about their Decision to Pursue Tracheostomy for Children with Medical Complexity.

OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study conducted in western North Carolina between 2013 and 2014, we interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past 5 years. Three of the CMC were deceased at the time of the interview; 8 were decannulated. In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded, and transcribed verbatim. We used ATLAS.ti software to manage data and identified themes related to caregiver perceptions about tracheostomy decision. RESULTS: We found that caregivers often chose tracheostomy because extending the lives of their children and being able to care for them at home were important. Caregivers reported the many benefits of tracheostomy including improvement in respiratory symptoms, physical and developmental health, quality of life, and means to provide medical care quickly when needed. There were negative effects of tracheostomy such as mucous plugs, excessive secretions, accidental decannulation necessitating emergency tracheostomy tube change, and the increased infection risk. Providing medical care for CMC with tracheostomy at home was difficult, but improved over time. Caregivers were generally satisfied with their decision to pursue tracheostomy for their CMC. CONCLUSIONS: Decisional satisfaction with tracheostomy for CMC is high. In counseling caregivers about tracheostomy, clinicians should present both the benefits and risks. Future studies should quantify the outcomes described in this study.

Lessons Learned From a Community-Based Participatory Research Mental Health Promotion Program for American Indian Youth.

Background American Indian (AI) youth have the highest rates of suicide among racial/ethnic minority groups in the United States. Community-based strategies are essential to address this issue, and community-based participatory research (CBPR) offers a model to engage AI communities in mental health promotion programming. Objectives This article describes successes and challenges of a CBPR, mixed-method project, The Lumbee Rite of Passage (LROP), an academic-community partnership to develop and implement a suicide prevention program for Lumbee AI youth in North Carolina. Method LROP was conducted in two phases to (1) understand knowledge and perceptions of existing mental health resources and (2) develop, implement, and evaluate a cultural enrichment program as a means of suicide prevention. Discussion/Results LROP implemented an effective community-academic partnership by (1) identifying and understanding community contexts, (2) maintaining equitable partnerships, and (3) implementing a culturally tailored research design targeting multilevel changes to support mental health. Strategies formed from the partnership alleviated challenges in each of these key CBPR concept areas. Conclusions LROP highlights how a CBPR approach contributes to positive outcomes and identifies opportunities for future collaboration in a tribal community. Using culturally appropriate CBPR strategies is critical to achieving sustainable, effective programs to improve mental health of AI youth.

Lessons learned in community research through the Native Proverbs 31 Health Project.

BACKGROUND: American Indian women have high rates of cardiovascular disease largely because of their high prevalence of hypertension, diabetes, and obesity. This population has high rates of cardiovascular disease-related behaviors, including physical inactivity, harmful tobacco use, and a diet that promotes heart disease. Culturally appropriate interventions are needed to establish health behavior change to reduce cardiovascular disease risk. COMMUNITY CONTEXT: This study was conducted in Robeson County, North Carolina, the traditional homeland of the Lumbee Indian tribe. The study's goal was to develop, deliver, and evaluate a community-based, culturally appropriate cardiovascular disease program for American Indian women and girls. METHODS: Formative research, including focus groups, church assessments, and literature reviews, were conducted for intervention development. Weekly classes during a 4-month period in 4 Lumbee churches (64 women and 11 girls in 2 primary intervention churches; 82 women and 8 girls in 2 delayed intervention churches) were led by community lay health educators. Topics included nutrition, physical activity, and tobacco use cessation and were coupled with messages from the Proverbs 31 passage, which describes the virtuous, godly woman. Surveys collected at the beginning and end of the program measured programmatic effects and change in body mass index. OUTCOME: Churches were very receptive to the program. However, limitations included slow rise in attendance, scheduling conflicts for individuals and church calendars, and resistance to change in cultural traditions. INTERPRETATION: Churches are resources in developing and implementing health promotion programs in Christian populations. Through church partnerships, interventions can be tailored to suit the needs of targeted groups.

Telehealth for Children With Medical Complexity During the COVID Pandemic: A Qualitative Study Exploring Caregiver Experiences.

Children with medical complexity (CMC) receive care from many clinicians. Our objective is to describe caregivers' experiences about telehealth for CMC. This qualitative study conducted in North Carolina involves semistructured interviews with 23 caregivers of CMC (15 English; 8 Spanish). Data were analyzed using thematic content analysis. Five themes were identified: (1) telehealth allayed caregivers' fears about their children's exposure to COVID-19 and mitigated the challenges with in-person visits during the pandemic. (2) Telehealth reduced the logistical challenges of in-person visits for CMC, enabled providers to see children in their home environment, and prevented appointment cancelations. (3) System inaccessibility, technical problems, and providers' inability to deliver telehealth were challenges. (4) Inadequate evaluation of the child and caregiver-provider communication were limitations. (5) Caregivers were satisfied with telehealth, found variability in telehealth offering, and wished telehealth continued to remain an option. Telehealth is a viable option for outpatient care delivery for CMC.

Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

OBJECTIVE: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships. Our objective was to understand the perspectives of parents and nurses about HHAs. METHODS: In Illinois (IL) from 2019 to 2022, HHNs for and parents of children with invasive mechanical ventilation were interviewed. In North Carolina (NC) from 2012 to 2013, parents of CMC were interviewed, and from 2013 to 2014 HHNs participated in focus groups. Each dataset was initially analyzed separately for main themes relating to HHAs. Using collaborative thematic analysis, we determined themes common across datasets. RESULTS: In IL, 23 mothers, 12 fathers, and 20 nurses were interviewed. In NC, 19 mothers, 6 fathers, and 1 grandmother were interviewed; and 4 focus groups of 18 nurses were conducted. Four common themes were identified. 1) HHAs do not have a uniform process for hiring and assigning nurses to cases. 2) HHAs have marked variability in training offered to nurses. 3) Shift scheduling, notifications, and communications with the HHAs frustrate parents and nurses. 4) Nurses and parents have little allegiance to specific HHAs; they frequently change agencies or work with several simultaneously. CONCLUSIONS: Parents and nurses perceive practices for hiring, training, and staffing as inconsistent, and experience communication challenges. HHA-level problems may contribute to issues with HHN retention and complicate the lives of the families of CMC. Further research about this critical health care sector is needed.

Factors associated with collaboration among agencies serving children with complex chronic conditions.

Our objective was to identify agency-level factors that increase collaborative relationships between agencies that serve children with complex chronic conditions (CCC). We hypothesized that an agency will collaborate with more partners in the network if the agency had a coordinator and participated in a community coalition. We surveyed representatives of 63 agencies that serve children with CCC in Forsyth County, North Carolina about their agencies' collaborations with other agencies. We used social network analytical methods and exponential random graph analysis to identify factors associated with collaboration among agencies. The unit of analysis was the collaborative tie (n = 3,658) between agencies in the network. Agencies participating in a community coalition were 1.5 times more likely to report collaboration than agencies that did not participate in a coalition. Presence of a coordinator in an agency was not associated with the number of collaborative relationships. Agencies in existence for a longer duration (≥11 vs. ≤10 years; adjusted odds ratio (aOR): 2.1) and those with a higher proportion of CCC clientele (aOR: 2.1 and 1.6 for 11-30 % and ≥31 % compared to ≤10 %) had greater collaboration. Care coordination agencies and pediatric practices reported more collaborative relationships than subspecialty clinics, home-health agencies, durable medical equipment companies, educational programs and family-support services. Collaborative relationships between agencies that serve children with CCC are increased by coalition participation, longer existence and higher CCC clientele. Future studies should evaluate whether interventions to improve collaborations among agencies will improve clinical outcomes of children with CCC.

More than medications: a patient-centered assessment of Parkinson's disease care needs during hospitalization.

Background: Parkinson's disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population. Objectives: This qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting. Methods: Focus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis. Results: A total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD. Conclusion: PD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes.

Prognostic Awareness, Palliative Care Use, and Barriers to Palliative Care in Patients Undergoing Immunotherapy or Chemo-Immunotherapy for Metastatic Lung Cancer.

Background and Objectives: This study describes patients' prognostic awareness and palliative care use in the setting of immunotherapy for metastatic non-small cell lung cancer (mNSCLC). Design: We surveyed 60 mNSCLC patients receiving immunotherapy at a large academic medical center; conducted follow-up interviews with 12 survey participants; and abstracted palliative care use, advance directive completion, and death within a year of survey completion from the medical record. Results: Forty seven percent of patients surveyed thought they would be cured; 83% were not interested in palliative care. Interviews suggested oncologists emphasized therapeutic options when discussing prognosis and that commonly used descriptions of palliative care may exacerbate misperceptions. Only 7% had received outpatient palliative care and 8% had an advance directive a year after the survey; only 16% of the 19 patients who died had received outpatient palliative care. Conclusions: Interventions are needed to facilitate prognostic discussions and outpatient palliative care during immunotherapy. Clinical Trial Registration Number NCT03741868.

Feasibility of Systems Support Mapping to guide patient-driven health self-management in colorectal cancer survivors.

OBJECTIVE: To evaluate feasibility of System Support Mapping (MAP), a systems thinking activity that involves creating a diagram of existing self-management activities (e.g. symptom management, health behaviors) to facilitate autonomous engagement in optimal self-management. DESIGN: One-arm pilot study of MAP in colorectal cancer survivors (NCT03520283). MAIN OUTCOME MEASURES: Feasibility of recruitment and retention (primary outcome), acceptability, and outcome variability over time. RESULTS: We enrolled 24 of 66 cancer survivors approached (36%) and 20 completed follow-up (83%). Key reasons for declining participation included: not interested (n = 18), did not perceive a need (n = 9), and emotional distress/overwhelmed (n = 7). Most participants reported that MAP was acceptable (e.g. 80% liked MAP quite a bit/very much). Exploratory analyses revealed a -4.68 point reduction in fatigue from before to 2 weeks after MAP exceeding a minimally important difference (d = -0.68). There were also improvements in patient autonomy (d = 0.63), self-efficacy (for managing symptoms: d = 0.56, for managing chronic disease: d = 0.44), psychological stress (d = -0.45), anxiety (d = -0.34), sleep disturbance (d = -0.29) and pain (d = -0.32). Qualitative feedback enhanced interpretation of results. CONCLUSIONS: MAP feasibility in colorectal cancer survivors was mixed, predominantly because many patients did not perceive a need for this approach. MAP was acceptable among participants and showed promise for improving health outcomes.

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

PURPOSE: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. METHODS: Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. RESULTS: Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. CONCLUSION: Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

The role of religion and spirituality in caregiver decision-making about tracheostomy for children with medical complexity.

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior 5 years. Four themes emerged: (1) Caregivers believed R&S to be powerful for their children's healing, and helped them cope with their children's illnesses; (2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; (3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; (4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.

OBJECTIVE: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC. DESIGN: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision-making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision-making framework and process. RESULTS: Many factors influenced caregivers' decisions, including children's well-being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision-making has inter-related caregiver- and HCP-level factors that influence the process. The framework contains elements not captured in a shared decision-making model, but better fits a collaborative decision-making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision-making conversations. CONCLUSIONS: CDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision-making about other LSTs needs further exploration.

Phase I Study of Muscadine Grape Extract for Patients With Advanced Cancer.

OBJECTIVE: Preclinical studies with muscadine grape extract (MGE) show antitumor activity and decreased systemic inflammation. This phase I study (NCT02583269) assessed safety and tolerability of a proprietary MGE preparation in patients with advanced solid tumors. METHODS: Patients with metastatic or unresectable cancers who were progressing on standard therapies were assigned to MGE in a standard 3+3 design. Five dose levels were tested (320 to 1600 mg total phenolics/d). Safety and maximum-tolerated dose were assessed after 4 weeks. Patients were evaluated for response at 8 weeks and continued on MGE if clinically stable. Secondary outcomes were response, survival, adherence, fatigue, and quality of life (QOL). RESULTS: In total, 23 patients (lung, n=7; gastrointestinal, n=7; genitourinary, n=6; other, n=3) received MGE capsules by mouth twice daily. The cohort [median age 72 years, 48% Eastern Cooperative Oncology Group (ECOG) 2] was heavily pretreated. After 4 weeks on MGE, possibly attributable adverse events grade 2 or higher were fatigue (n=1), decreased lymphocyte count (n=1), and constipation (n=2), including 1 dose-limiting toxicity for grade 3 constipation. Maximum-tolerated dose was not reached. No partial responses were observed. Median time on therapy was 8 weeks, with 29% of patients treated beyond 16 weeks and a median overall survival of 7.2 months. QOL and fatigue levels were stable from baseline to 8 weeks. Higher MGE dose was correlated with improvement in self-reported physical well-being QOL at 8 weeks (r=0.6; P=0.04). CONCLUSIONS: MGE is safe and well-tolerated in heavily pretreated and older cancer patients.  The potential anticancer properties and the effects of MGE on physical well-being and QOL metrics will be evaluated in future studies.

Transitioning Children With Medical Complexity From Hospital to Home Health Care: Implications for Hospital-Based Clinicians.

OBJECTIVES: There is limited research about best practices for transitioning children with medical complexity (CMC) from hospital to home. Our objectives were to describe issues related to transitioning CMC from hospital to home health care and identify strategies to improve this transition. METHODS: This qualitative study was conducted in western North Carolina between 2012 and 2014 and involved a focus group of 14 hospital- and community-based stakeholders and 4 focus groups of 18 home health nurses. Focus groups were audio-recorded and transcribed verbatim, and transcriptions were managed in ATLAS.ti software. By using content analysis, recurrent themes related to transitioning CMC from hospital to home were identified. RESULTS: Themes in 4 domains emerged. (1) Home health orders: home health care providers desired hospital-based providers to write accurate and specific orders, notify them in advance about discharge to order specialized supplies, and avoid changing orders at the last minute. (2) Communication: participants found discharge summaries useful but did not always receive them. Communication between hospital-based clinicians, home health care providers, and the child's primary care physician about the hospitalization and home care was important. (3) Resources: home health care providers needed hospital-based clinicians to be a resource during the early period of transition home. (4) Caregiver preparation: participants emphasized caregiver preparation about medical care of CMC, home health nursing, and the differences between hospital and home care practices in the care of CMC. CONCLUSIONS: There are gaps in the system of transitional care of CMC. Potential strategies to improve transitional care of CMC between the hospital and home health care services exist.