Essential Components of an Electronic Patient-Reported Symptom Monitoring and Management System: A Randomized Clinical Trial.

Importance: Multicomponent electronic patient-reported outcome cancer symptom management systems reduce symptom burden. Whether all components contribute to symptom reduction is unknown. Objective: To deconstruct intervention components of the Symptom Care at Home (SCH) system, a digital symptom monitoring and management intervention that has demonstrated efficacy, to determine which component or combination of components results in the lowest symptom burden. Design, Setting, and Participants: This randomized clinical trial included participants who were older than 18 years, had been diagnosed with cancer, had a life expectancy of 3 months or greater, were beginning a chemotherapy course planned for at least 3 cycles, spoke English, and had daily access and ability to use a telephone. Eligible participants were identified from the Huntsman Cancer Institute, University of Utah (Salt Lake City), and from Emory University Winship Cancer Institute, including Grady Memorial Hospital (Atlanta, Georgia), from August 7, 2017, to January 17, 2020. Patients receiving concurrent radiation therapy were excluded. Dates of analysis were from February 1, 2020, to December 22, 2023. Interventions: Participants reported symptoms daily during a course of chemotherapy and received automated self-management coaching with an activity tracker without (group 1) and with (group 2) visualization, nurse practitioner (NP) follow-up for moderate-to-severe symptoms without (group 3) and with (group 4) decision support, or the complete SCH intervention (group 5). Main Outcomes and Measures: The primary outcome, symptom burden, was assessed as the summed severity of 11 chemotherapy-related symptoms rated on a scale of 1 to 10 (with higher scores indicating greater severity), if present. Results: The 757 participants (mean [SD] age, 59.2 [12.9] years) from 2 cancer centers were primarily female (61.2%). The most common cancer diagnoses were breast (132 [17.4%]), lung (107 [14.1%]), and colorectal (99 [13.1%]) cancers; 369 patients (48.7%) had metastatic disease. The complete SCH intervention including automated self-management coaching and NP follow-up with decision support (group 5) was superior in reducing symptom burden to either of the self-management coaching groups, as shown by the mean group differences in area under the curve (group 1, 1.86 [95% CI, 1.30-2.41] and group 2, 2.38 [95% CI, 1.84-2.92]; both P < .001), and to either of the NP follow-up groups (group 3, 0.57 [95% CI, 0.03-1.11]; P =.04; and group 4, 0.66 [95% CI, 0.14-1.19]; P = .014). Additionally, NP follow-up was superior to self-management coaching (group 1 vs group 3, 1.29 [95% CI, 0.72-1.86]; group 1 vs group 4, 1.20 [95% 12 CI, 0.64-1.76]; group 2 vs group 3, 1.81 [95% CI, 1.25-2.37]; and group 2 vs group 4, 1.72 [95% CI, 1.17-2.26]; all P < .001), but there was no difference between the 2 self-management coaching groups (-0.52 [95% CI, -1.09 to 0.05]; P = .07) or between the 2 NP groups (-0.10 [95% CI, -0.65 to 0.46]; P = .74). Conclusions and Relevance: In this randomized clinical trial of adult participants undergoing chemotherapy treatment for cancer, the complete intervention, rather than any individual component of the SCH system, achieved the greatest symptom burden reduction. These findings suggest that a multicomponent digital approach to cancer symptom management may offer optimal symptom burden reduction. Trial Registration: ClinicalTrials.gov Identifier: NCT02779725.

Assessing Patient Perspectives and the Health Equity of a Digital Cancer Symptom Remote Monitoring and Management System.

PURPOSE: People with cancer experience poorly controlled symptoms that persist between treatment visits. Automated digital technology can remotely monitor and facilitate symptom management at home. Essential to digital interventions is patient engagement, user satisfaction, and intervention benefits that are distributed across patient populations so as not to perpetuate inequities. We evaluated Symptom Care at Home (SCH), an automated digital platform, to determine patient engagement, satisfaction, and whether intervention subgroups gained similar symptom reduction benefits. METHODS: 358 patients with cancer receiving a course of chemotherapy were randomly assigned to SCH or usual care (UC). Both groups reported daily on 11 symptoms and completed the SF36 (Short Form Health Survey) monthly. SCH participants received immediate automated self-care coaching on reported symptoms. As needed, nurse practitioners followed up for poorly controlled symptoms. RESULTS: The average participant was White (83%), female (75%), and urban-dwelling (78.6%). Daily call adherence was 90% of expected days. Participants reported high user satisfaction. SCH participants had lower symptom burden than UC in all subgroups: age, sex, race, income, residence type, diagnosis, and stage (all P < .001 effect size 0.33-0.65), except for stages I and II cancers. Non-White and lower-income SCH participants gained a higher magnitude of symptom reduction than White participants and higher-income participants. Additionally, SCH men gained higher SF36 mental health (MH) benefit. There were no differences on other SF36 indices. CONCLUSION: Participants were highly satisfied and consistently engaged the SCH platform. SCH men gained large MH improvements, perhaps from increased comfort in sharing concerns through automated interactions. Although all intervention subgroups benefited, non-White participants and those with lower income gained higher symptom reduction benefit, suggesting that systematic care through digital tools can overcome existing disparities in symptom care outcomes.

Pairing automated exercise coaching with patient-reported symptom monitoring: A way to nudge exercise uptake during cancer treatment?

INTRODUCTION: Symptoms during cancer treatment cause burden, diminished physical functioning, and poor quality of life. Exercise is recommended during treatment to mitigate symptoms; however, interventions are difficult to translate into clinical care due to the lack of patient uptake and clinical implementation barriers. We evaluated the uptake, acceptability, and impact of an automated ePRO exercise module triggered by three patient-reported symptoms: nausea/vomiting, fatigue, and anxiety, during chemotherapy. METHODS: We conducted a secondary analysis of an exercise module intervention imbedded in the cancer symptom monitoring and management platform, Symptom Care at Home (SCH). Utilizing behavioral economics principles, the exercise module was triggered when any of the three symptoms were reported. Once triggered, participants were coached on exercise benefits for symptom reduction and then offered the opportunity to set weekly exercise goals plus tracking of the goal outcomes and receive further encouragement. We examined uptake, exercise goal setting and attainment, and symptom impact. RESULTS: Of 180 SCH participants receiving the SCH intervention, 170 (94.4%) triggered the exercise module and 102 of the 170 (60%) accepted the module, setting goals on average for 6.3 weeks. Of 102 participants, 82 (80.4%) achieved one or more exercise goals, exercising on average 79.8 min/week. Participants who achieved a higher proportion of goals had statistically significant lower overall symptom severity and lower severity of the triggered symptom. CONCLUSION: An automated mHealth exercise coaching intervention, aimed to nudge those receiving chemotherapy to initiate an exercise routine had significant uptake, is acceptable and may reduce symptom severity. TRIAL REGISTRATION: NCT01973946.

Low Levels of Lifetime Pap Test Receipt Among Vulnerable Guatemalans.

Low and middle-income countries, such as Guatemala, shoulder a disproportionate share of cervical cancer, a preventable disease in high income countries. Tangible obstacles, such as lack of access to health care, cultural differences, and insufficient infrastructure, and facilitators, such as being Ladino, married, and educated, have been identified in the literature related to cervical cancer prevention. The aim of this survey was to explore barriers and facilitators to cervical cancer prevention, comparing rural Indigenous and urban Ladino populations. We surveyed 139 women in two health clinics. Participants answered questions about demographic information, cervical cancer knowledge, and health care behaviors. We analyzed survey data with four bivariate models. Our results suggest vulnerable populations, such as rural Indigenous women who are single, illiterate, and lack education, face higher cervical cancer risk. Partnerships should be formed with health promotors and lay midwives to educate and encourage vulnerable populations to prevent cervical cancer.

Dying with dementia in nursing homes: A population-based study of decedents and their families.

BACKGROUND: Families play a critical role in end-of-life (EOL) care for nursing home (NH) residents with dementia. Despite the important role of family, little is known about the availability and characteristics of families of persons with dementia who die in NHs. METHODS: This is a retrospective cohort study of 18,339 individuals 65 years and older with dementia who died in a Utah NH between 1998 and 2016, linked to their first-degree family (FDF) members (n = 52,566; spouses = 11.3%; children = 58.3%; siblings = 30.3%). Descriptive statistics, chi-square tests, and t-tests were used to describe the study cohort and their FDF members and to compare sociodemographic and death characteristics of NH decedents with (n = 14,398; 78.5%) and without FDF (n = 3941; 21.5%). RESULTS: Compared with NH decedents with FDF, NH decedents with dementia without FDF members were more likely to be older (mean age 86.5 vs 85.5), female (70.5% vs 59.3%), non-White/Hispanic (9.9% vs 3.2%), divorced/separated/widowed (84.4% vs 61.1%), less educated (<12th grade; 42.2% vs 33.7%), have Medicare and Medicaid (20.8% vs 12.5%), and die in a rural/frontier NH (25.0% vs 23.4%). NH decedents who did not have FDF were also more likely to die from cancer (4.2% vs 3.9%), chronic obstructive pulmonary disease (COPD; 3.9% vs 2.5%), and dementia (40.5% vs 38.4%) and were less likely to have 2+ inpatient hospitalizations at EOL (13.9% vs 16.2%), compared with NH decedents with FDF. CONCLUSIONS: Findings highlight differences in social determinants of health (e.g., sex, race, marital status, education, insurance, rurality) between NH decedents with dementia who do and do not have FDF-factors that may influence equity in EOL care. Understanding the role of family availability and familial characteristics on EOL care outcomes for NH residents with dementia is an important next step to informing NH dementia care interventions and health policies.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Family Ties at End-of-Life: Characteristics of Nursing Home Decedents With and Without Family.

Background: Little is known about nursing home (NH) residents' family characteristics despite the important role families play at end-of-life (EOL). Objective: To describe the size and composition of first-degree families (FDFs) of Utah NH residents who died 1998-2016 (n = 43,405). Methods: Using the Utah Population Caregiving Database, we linked NH decedents to their FDF (n = 124,419; spouses = 10.8%; children = 55.3%; siblings = 32.3%) and compared sociodemographic and death characteristics of those with and without FDF members (n = 9424). Results: Compared to NH decedents with FDF (78.3%), those without (21.7%) were more likely to be female (64.7% vs. 57.1%), non-White/Hispanic (11.2% vs. 4.2%), less educated (<9th grade; 41.1% vs. 32.4%), and die in a rural/frontier NH (25.3% vs. 24.0%, all p < 0.001). Despite similar levels of disease burden (Charlson Comorbidity score 3 + 37.7% vs. 38.0%), those without FDF were more likely to die from cancer (14.2% vs. 12.4%), Chronic Obstructive Pulmonary Disease (COPD) (6.0% vs. 4.0%), and dementia (17.1% vs. 16.6%, all p < 0.001), and were less likely to have 2+ hospitalizations at EOL (20.5% vs. 22.4%, p < 0.001). Conclusions: Among NH decedents, those with and without FDF have different sociodemographic and death characteristics-factors that may impact care at EOL. Understanding the nature of FDF relationship type on NH resident EOL care trajectories and outcomes is an important next step in clarifying the role of families of persons living and dying in NHs.

Understanding mHealth Patient-Reported Priority Symptoms for Gynecologic Cancer During Chemotherapy: A Secondary Analysis.

OBJECTIVES: To determine the percentage of and the most prevalent moderate to severe symptoms and to analyze longitudinal patterns and co-occurrence of symptoms during the first three cycles of chemotherapy. SAMPLE & SETTING: A secondary analysis of 26 women with gynecologic cancer who reported daily symptoms. METHODS & VARIABLES: Moderate to severe symptom presence and severity levels were calculated as proportions. Symptoms for each patient were graphed during three cycles and analyzed for patterns of onset, duration, and clustering. RESULTS: Patients completed 1,562 calls to the remote symptom monitoring system. The most commonly reported moderate to severe symptoms were pain, fatigue, and trouble sleeping. Pain and fatigue co-occurred with trouble sleeping in one symptom pattern. Patterns included no moderate to severe symptoms, moderate to severe symptoms during one cycle, moderate to severe symptoms during two cycles, and moderate to severe symptoms during all cycles. IMPLICATIONS FOR NURSING: Nurses should consistently assess symptoms across cycles. To verify distinct classes of symptoms and better target interventions, further study is warranted.

Cancer caregivers at the end-of-life: How much me vs. how much we?

OBJECTIVE: This study explored cancer caregivers' individual and communal coping through their use of personal and communal pronouns during naturally occurring conversations. METHODS: Nurse-home hospice visits involving cancer patients and their partner caregivers were audio recorded and then transcribed. Pronoun use was analyzed using Linguistic Inquiry Word Count (LIWC) software and descriptive statistics compared patient and partner caregivers' pronoun use. Personal and communal pronoun use was examined within six identified topics of caregiver speech: patient medical care, daily life, emotion, criticism/disagreement, relationships with family/friends, and asserting needs. RESULTS: Dyads (N = 76) had an average of 35.8 years in their relationship. Caregivers used proportionately more first-person singular (I-talk) than first-person plural (we-talk). However, they used significantly less I-talk than patients and less I-talk than LIWC measures in naturally occurring speech. Caregivers were most likely to discuss patient medical care (41.9%) and least likely to discuss their own needs (3.8%). CONCLUSION: Partner caregivers may find it easier to express emotions related to communal stressors, rather than their individual ability to cope with end-of-life caregiving. INNOVATION: Examining personal and communal pronoun use by partner caregivers during nurse-home hospice visits may provide a more objective measure of caregiver coping than standard self-report measures.

Cancer Hospice Caregivers' Self-care Behaviors: The Role of Caregiving Tasks, Burden, and Mental Health.

Cancer hospice family caregivers provide intensive support for patients at the end of life, sometimes at the expense of self-care. This secondary analysis examined the role of caregiving burden, activities of daily living, and mental health on self-care behaviors among cancer hospice family caregivers. Logistic regression models were adjusted for sociodemographic and caregiver characteristics, and model fit was evaluated with Hosmer-Lemeshow tests. Participants (N = 86) were mostly women (n = 62, 72.09%), White (n = 76, 88.37%), and spousal caregivers (n = 44, 51.16%). Almost half reported not getting enough rest (47.67%), time to exercise (47.67%), or time to slow down and rest when feeling ill (46.51%). Caregivers with better mental health reported being more likely to have enough time to exercise (adjusted odds ratio [OR adj ], 1.15, [1.05, 1.26]; P = .004), rest (OR adj , 1.11, [1.01, 1.22]; P = .031), and slow down when ill (OR adj , 1.16, [1.04, 1.30]; P = .010). Controlling for sociodemographic and caregiver characteristics, men caregivers had 88% lower odds of being able to rest when ill (OR adj , 0.12, [0.03, 0.52]; P = .005) compared with women. Number of care tasks, not caregiving burden, was associated with self-care behaviors. Findings provide a preliminary understanding of factors related to caregiver self-care and have implications for increased assessment of caregiver mental health and self-care needs to better support family-oriented hospice care.

Hospice Caregivers' Perception of Family and Non-Family Social Support and Stress over Time: Associations with Reports of General Support.

Social support has been identified as a key factor to protect wellbeing for home hospice cancer caregivers. However, few studies have assessed social support over time in this context, and measures of support are often limited to general assessments of perceived support. Our goal was to (1) describe change in cancer home hospice caregivers' social support over time during care and into bereavement and (2) explore the impact of perceived stress and support from family and non-family members on caregivers' perceived general social support. We conducted a secondary analysis of longitudinal prospective questionnaire data. Forty caregivers completed measures of general perceived support, family and non-family support and stress during hospice enrollment and 2 and 6 months post the patient's death. Linear mixed models were used to determine change in support over time and the contribution of specific support/stress ratings to general support assessments. Caregivers overall had moderate and stable levels of social support over time, though there was significant variation between and within individuals. Family and non-family support and stress from family predicted general perceptions of social support, while no effects were found for non-family stress. This work suggests a need for more specific measures of support and stress, and the need for research to focus on improving baseline levels of caregiver perceived support.

Technology-Assisted mHealth Caregiver Support to Manage Cancer Patient Symptoms: A Randomized Controlled Trial.

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.

Family Caregiver Reports of Their Own and Patient Symptoms in Cancer Home Hospice Approaching End-of-Life.

Context: Family caregivers assume the primary responsibility of assessing and managing hospice cancer patient symptoms while simultaneously managing their own wellbeing and symptoms. Objectives: Describe caregivers' assessment of hospice cancer patient and their own symptoms during the last 60 days of patient life, and assess the relationship between patient and caregiver symptoms over time. Methods: Caregiver symptom report of self and cancer home hospice patient symptom data were collected via telephone in the final 60 days of patient life. Descriptive data on symptom severity and prevalence were summarized. Exploratory Factor Analysis was used to group individual symptoms. Factors representing patient symptoms, caregiver symptoms, and caregiver outlook were analyzed using mixed-effects analysis to determine relationships between factors and change in relationship between factors over time. Results: Data from 61 patient-caregiver dyads are presented. At least 1 day of moderate-to-severe symptoms were reported in the majority of dyads. Significant auto-regressive associations were found, namely previous factor scores for an individual positively predicted the next factor scores for that individual. Previous caregiver report of patient symptoms was also positively associated with the next report of caregiver symptoms; previous caregiver report of their own symptoms were negatively associated with their next report of patient symptoms. Patient and caregiver symptoms and caregiver outlook worsened over time and the relationship between patient and caregiver symptoms strengthened closer to death. Conclusion: Our findings may guide hospice care team responses to caregiver and patient symptoms to promote individual level and unit level functioning.

Symptoms and daily experiences reported by children with cancer using a game-based app.

PURPOSE: Mobile health (mHealth) resources, including apps, are emerging as resources to support children in tracking symptoms and other health-related data. The purpose of this study was to describe symptoms and daily experiences reported by elementary school-age children receiving treatment for cancer using the newly developed Color Me Healthy app. DESIGN AND METHODS: Participants in this descriptive study were children 6-12 years of age, who were receiving cancer treatment at a free-standing children's hospital in the Intermountain West of the United States. Children were requested to use the app for at least five days between clinical visits. Children's app-reported data were extracted from individual user accounts for analysis. Quantitative data were summarized descriptively. Qualitative data were summarized using qualitative content analysis. RESULTS: Nineteen children (6-12 years; median 8 years; 7 females) completed 107 days of app use. All children reported symptoms at least once, and 14 reported at least one day with a symptom of moderate or greater severity. Daily experiences reported through the app reflected children's engagement in usual childhood experiences while also describing life with cancer, including symptoms. CONCLUSIONS: Elementary school-age children are capable of self-reporting symptoms using a symptom reporting app, providing preliminary evidence for the potential benefits and clinical relevance of mHealth resources to support health outcomes within this population. PRACTICE IMPLICATIONS: Clinicians should anticipate and support ongoing symptom management needs between clinical visits. Children's self-reported data can promote a person-centered approach to symptom assessment and management.

What contextual factors account for anxiety and depressed mood in hospice family caregivers?

OBJECTIVE: End-of-life caregiving is associated with poorer mental health compared with other caregiving. The objective of this study was to examine the association between contextual characteristics and appraisal factors on family caregivers' mental health and well-being. METHODS: Family hospice caregivers were recruited across four states using a non-probabilistic sampling approach. This study analyzed contextual (demographic, caregiving, economic) and appraisal factors (Medical Outcomes Study Social Support Survey, Zarit Burden Interview) on caregivers' anxiety and depression (Hospital Anxiety and Depression scale, and positive affect and well-being (Positive Affect and Well-being Scale). Hierarchical linear regression models were generated in SPSS version 24. RESULTS: Data from 102 family caregivers were analyzed. On average, participants were 58.93 years of age (SD = 14.24), mostly female (72.55%), spouses/partners (51.96%), and non-Hispanic White (78.43%). Most (75.49%) described their financial situation as comfortable or more than adequate. Younger age (B = -0.11, 95% CI = -0.18 to -0.05) and increased caregiving burden (B = 0.18, 95% CI = 0.09 to 0.27) were associated with increased anxiety, while lower perceived financial adequacy (B = -1.19, 95% CI = -2.07 to -0.32), lower social support (B = -0.04, 95% CI = -0.06 to -0.01), and increased caregiving burden (B = 0.15, 95% CI = 0.08-0.22) were associated with worsened depression. Greater social support (B = 0.10, 95% CI = 0.05-0.14) and lower caregiving burden (B = -0.19, 95% CI = -0.32 to -0.07) were associated with greater positive affect and well-being. CONCLUSIONS: Findings suggest significant impact of contextual factors on mental health and well-being, and support the need for holistic assessment of hospice caregivers' wellbeing and programs and policies providing social services and economic support to caregivers.

Communication of pain by school-age children with cancer using a game-based symptom assessment app: A secondary analysis.

PURPOSE: To evaluate the self-reported pain experiences of school-age children with cancer participating in a feasibility trial of a game-based symptom assessment app. METHOD: Nineteen children (median: 8 years, range 6-12 years old) receiving cancer treatment were recruited to complete five days of symptom tracking between clinical visits using a symptom assessment app. Children could report pain as a general symptom with the ability to further localize pain on an avatar. Children could also describe symptoms in response to the app's free-text questions or the app's diary. Descriptive statistics characterized reports of pain frequency, severity, bother, and location. Free-text responses were examined for pain-related statements and analyzed using content analysis. RESULTS: All 19 children documented pain on at least one day of app reporting between clinical visits. Pain was most frequently recorded as of mild severity and mild bother. Participants localized pain most frequently to the head, followed by the stomach, chest, extremities, and mouth. Eleven children documented 32 qualitative statements which included rich descriptions of pain-related topics (i.e., "my port hurts a little") and location (i.e., "my vision aching"). CONCLUSIONS: These results demonstrate that school-age children with cancer are willing to describe their ambulatory pain experiences on a game-based mobile app through quantitative reports and by using narrative descriptions. Additionally, these findings can potentially guide clinicians in using multiple approaches to elicit a clinically meaningful evaluation of pain in this population.

Live hospice discharge: Experiences of families, and hospice staff.

OBJECTIVE: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. METHODS: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). RESULTS: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. CONCLUSION: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. PRACTICE IMPLICATIONS: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.

Hospice nurse identification of comfortable and difficult discussion topics: Associations among self-perceived communication effectiveness, nursing stress, life events, and burnout.

OBJECTIVE: To assess hospice nurses' self-perceived communication effectiveness, identify comfortable and difficult discussion topics, and explore associations between self-perceived communication effectiveness, burnout, nursing stress, and life events. METHODS: 181 nurses completed self-report measures, then listed comfortable and/or difficult patient and caregiver discussion topics. RESULTS: Nurses were generally experienced (median 9 years, range <1-46 as a registered nurse; median 3 years, range <1-23 as a hospice nurse), reporting overall Effective/Very Effective communication skills (85.6%); 70% desired more communication training. As nursing stress increased perceived overall communication effectiveness decreased (rs = -0.198; p 0.012). As burnout increased overall effectiveness (rs = -0.233; p 0.002) and effectiveness with difficult topics (rs = -0.225; p 0.003) decreased. Content analysis revealed 9 categories considered both comfortable and difficult to discuss; contextual comments provided fuller explanation (e.g. providing general information on the Dying Process was comfortable, discussing Dying process during patient death was difficult). Seven additional categories (e.g. Denial) were deemed uniquely difficult. CONCLUSION: Hospice nurses perceive themselves as effective communicators, yet want additional training. Perceived communication effectiveness is associated with burnout and stress. PRACTICE IMPLICATIONS: Communication training that focuses on contextually grounded topics identified by participants may optimize communication between hospice nurses, patients and caregivers.

Magnetic Resonance Imaging and Clinical Factors Associated With Ischemic Stroke in Patients Suspected of Cervical Artery Dissection.

Background and Purpose- Cervical artery dissection is a major cause of ischemic stroke in the young and presents with various imaging findings, including stenosis and intramural hematoma (IMH). Our goal was to determine the relative contribution of lumen findings and IMH to acute ischemic stroke and whether a heavily T1-weighted sequence could more reliably detect IMH. Methods- Institutional review board approval was obtained for this retrospective study of 254 patients undergoing magnetic resonance imaging/magnetic resonance angiography for suspected dissection. Imaging included standard turbo spin-echo (TSE) T1-fat saturation and heavily T1-weighted flow-suppressed magnetization-prepared rapid acquisition gradient-recalled echo sequences. Subjects with stents (1) or atherosclerotic disease (26) were excluded, leaving 227 subjects. Kappa analysis was used to determine IMH interrater reliability on magnetization-prepared rapid acquisition gradient-recalled echo and T1-fat saturation in 4 vessels per subject. Lumen findings, cardiovascular risk factors, medications, and nondissection stroke sources were recorded. Mixed-effects multivariate Poisson regression was used to determine the prevalence ratio of each factor with acute ischemic stroke, accounting for 4 vessels per patient with backward elimination to a threshold P value of 0.10. Results- Patients were 41.9% men, mean age of 47.3±16.6 years, with 114 dissections and 107 strokes. IMH interrater reliability was significantly higher for magnetization-prepared rapid acquisition gradient-recalled echo (κ=0.83; 95% CI, 0.78-0.86) versus T1-fat saturation (0.58; 95% CI, 0.57-0.68). The final acute stroke prediction model included magnetization-prepared rapid acquisition gradient-recalled echo-detected IMH (prevalence ratio, 2.0; 95% CI, 1.1-3.9; P=0.034), stenosis, pseudoaneurysm, male sex, current smoking, and nondissection stroke sources. The final model had high discrimination for acute stroke (area under the curve, 0.902; 95% CI, 0.872-0.932), compared with models without stenosis (0.861; 95% CI, 0.821-0.902), and without stenosis and IMH (0.831; 95% CI, 0.783-0.879). All 3 models were significantly different at P<0.05. Conclusions- Along with stenosis, IMH detection significantly contributed to acute ischemic stroke pathogenesis in patients with suspected cervical artery dissection. In addition, IMH detection can be made more reliable with heavily T1-weighted sequences.

Activity rhythms and clinical correlates in fibromyalgia.

The primary aim of this study was to evaluate activity rhythms in fibromyalgia syndrome (FMS) and their association with FMS-related symptoms. We hypothesized that stronger and more consistent activity rhythms would be associated with reduced symptom severity and presentation in FMS. Two hundred ninety-two patients with FMS (mean age = 45.1 ± 11.1; 272 women) provided a 7-day actigraphy recording and responses to questionnaires addressing degree of pain, fatigue, mood, and physical impairment. Using a simple cosine model, we extracted Amplitude (activity range), Phi (time at maximum), Mesor (mean activity), and their variabilities (across days) from each participant's actigraphy. The clinical and actigraphic measures were operationally independent. There was a significant canonical relationship between activity rhythm parameters and clinical FMS measures (r = 0.376, R = 0.14, P < 0.001). The set of Mesor, Amplitude, and Phi activity parameters remained associated with clinical measures when controlled statistically for both demographics and activity variability (P < 0.001). Each activity parameter provided unique discrimination of the clinical set by multivariate test (P = 0.003, 0.018, and 0.007 for Amplitude, Phi, and Mesor, respectively). These results revealed that better pain, fatigue, mood, physical impairment, and sleep outcomes were associated with higher activity range and more rhythmicity (Amplitude), increased mean activity (Mesor), and with earlier timing of peak activity (Phi). Exploratory analyses revealed significantly worse sleep for individuals with low Amplitude and more delayed Phi.