RESUMEN
As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.
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Demencia , Neoplasias , Humanos , Demencia/complicaciones , Demencia/diagnóstico , Demencia/terapia , Cuidadores , Neoplasias/complicaciones , Neoplasias/terapiaRESUMEN
Evidence on cash transfers as a population-level intervention to support healthy cognitive aging in low-income settings is sparse. We assessed the effect of a cash transfer intervention on cognitive aging outcomes in older South African adults. We leveraged the overlap in the sampling frames of a Phase 3 randomized cash transfer trial [HIV Prevention Trial Network (HPTN) 068, 2011-2015] and an aging cohort [Health and Aging in Africa: A Longitudinal Study of an INDEPTH Community (HAALSI), 2014-2022] in rural Mpumalanga Province, South Africa. In 2011/12, young women and their primary caregivers were randomly assigned 1:1 to receive a monthly cash transfer or control. In 2014/2015, 862 adults aged 40+ y living in trial households were enrolled in the HAALSI cohort, with cognitive data collected in three waves over 7 y. We estimated the impact of the intervention on rate of memory decline and dementia probability scores. Memory decline in the cash transfer arm was 0.03 SD units (95% CI: 0.002, 0.05) slower per year than in the control arm. Dementia probability scores were three percentage points lower in the cash transfer arm than the control arm (ß = -0.03; 95% CI: -0.05, -0.001). Effects were consistent across subgroups. A modestly sized household cash transfer delivered over a short period in mid- to later-life led to a meaningful slowing of memory decline and reduction in dementia probability 7 y later. Cash transfer programs could help stem the tide of new dementia cases in economically vulnerable populations in the coming decades.
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Demencia , Población Rural , Humanos , Sudáfrica/epidemiología , Femenino , Masculino , Demencia/epidemiología , Demencia/economía , Demencia/prevención & control , Persona de Mediana Edad , Anciano , Estudios Longitudinales , Pobreza , Adulto , Trastornos de la Memoria/prevención & control , Trastornos de la Memoria/epidemiología , Trastornos de la Memoria/economía , Cuidadores/economíaRESUMEN
Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.
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Supervivientes de Cáncer , Cuidadores , Política de Salud , Accesibilidad a los Servicios de Salud/organización & administración , Disparidades en Atención de Salud/organización & administración , Mejoramiento de la Calidad/organización & administración , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Investigación Biomédica/métodos , Investigación Biomédica/organización & administración , Supervivientes de Cáncer/estadística & datos numéricos , Niño , Preescolar , Medicina Basada en la Evidencia/métodos , Medicina Basada en la Evidencia/organización & administración , Femenino , Disparidades en el Estado de Salud , Humanos , Lactante , Recién Nacido , Masculino , Área sin Atención Médica , Persona de Mediana Edad , Evaluación de Necesidades , Evaluación de Procesos y Resultados en Atención de Salud , Atención Dirigida al Paciente/métodos , Atención Dirigida al Paciente/organización & administración , Derivación y Consulta/organización & administración , Apoyo Social , Estados Unidos , Adulto JovenRESUMEN
We know that infants' ability to coordinate attention with others toward the end of the first year is fundamental to language acquisition and social cognition. Yet, we understand little about the neural and cognitive mechanisms driving infant attention in shared interaction: do infants play a proactive role in creating episodes of joint attention? Recording electroencephalography (EEG) from 12-mo-old infants while they engaged in table-top play with their caregiver, we examined the communicative behaviors and neural activity preceding and following infant- vs. adult-led joint attention. Infant-led episodes of joint attention appeared largely reactive: they were not associated with increased theta power, a neural marker of endogenously driven attention, and infants did not increase their ostensive signals before the initiation. Infants were, however, sensitive to whether their initiations were responded to. When caregivers joined their attentional focus, infants showed increased alpha suppression, a pattern of neural activity associated with predictive processing. Our results suggest that at 10 to 12 mo, infants are not routinely proactive in creating joint attention episodes yet. They do, however, anticipate behavioral contingency, a potentially foundational mechanism for the emergence of intentional communication.
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Cuidadores , Cognición , Adulto , Humanos , Lactante , Desarrollo del Lenguaje , Comunicación , ElectroencefalografíaRESUMEN
BACKGROUND: The current standard of care of screening and referring patients for treatment for symptoms, such as depression, pain, and fatigue, is not effective. This trial aimed to test the efficacy of an integrated screening and novel stepped collaborative care intervention versus standard of care for patients with cancer and at least one of the following symptoms: depression, pain, or fatigue. METHODS: This randomised, parallel, phase 3 trial was conducted in 29 oncology outpatient clinics associated with the UPMC Hillman Cancer Center in the USA. Patients (aged ≥21 years) with any cancer type and clinical levels of depression, pain, or fatigue (or all of these) were eligible. Eligible family caregivers were aged 21 years or older and providing care to a patient diagnosed with cancer who consented for this study. Patients were randomly assigned (1:1) to stepped collaborative care or standard of care using a central, permuted block design (sizes of 2, 4, and 6) stratified by sex and prognostic status. The biostatistician, oncologists, and outcome assessors were masked to treatment assignment. Stepped collaborative care was once-weekly cognitive behavioural therapy for 50-60 min from a care coordinator via telemedicine (eg, telephone or videoconferencing). Pharmacotherapy for symptoms might be initiated or changed if recommended by the treatment team or preferred by the patient. Standard of care was screening and referral to a health-care provider for treatment of symptoms. The primary outcome was health-related quality of life in patients at 6 months. Maintenance of the treatment benefits was assessed at 12 months. Participants included in the primary analysis were per intention to treat, which included patients missing one or both follow-up assessments. This trial was registered with ClinicalTrials.gov (NCT02939755). FINDINGS: Between Dec 5, 2016, and April 8, 2021, 459 patients and 190 family caregivers were enrolled. 222 patients were assigned to standard of care and 237 to stepped collaborative care. Of 459 patients, 201 (44%) were male and 258 (56%) were female. Patients in the stepped collaborative care group had a greater 0-6-month improvement in health-related quality of life than patients in the standard-of-care group (p=0·013, effect size 0·09). Health-related quality of life was maintained for the stepped collaborative care group (p=0·74, effect size 0·01). Patients in the stepped collaborative care group had greater 0-6-month improvements than the standard-of-care group in emotional (p=0·012), functional (p=0·042), and physical (p=0·033) wellbeing. No adverse events were reported by patients in either group and deaths were considered unrelated to the study. INTERPRETATION: An integrated screening and novel stepped collaborative care intervention, compared with the current standard of care, is recommended to improve health-related quality of life. The findings of this study will advance the implementation of guideline concordant care (screening and treatment) and has the potential to shift the practice of screening and treatment paradigm nationwide, improving outcomes for patients diagnosed with cancer. FUNDING: US National Cancer Institute.
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Cuidadores , Neoplasias , Femenino , Humanos , Masculino , Fatiga , Neoplasias/diagnóstico , Neoplasias/terapia , Dolor , Calidad de Vida , Resultado del Tratamiento , Adulto Joven , AdultoRESUMEN
Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care into oncology practice for patients with advanced cancer. The question is no longer whether palliative care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing. These questions are particularly relevant given the scarcity of palliative care resources internationally. In this state-of-the-science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist palliative care on various health outcomes. Then, conceptual models are provided to support team-based, timely, and targeted palliative care. Team-based palliative care allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely palliative care, at its best, is preventive care to minimize crises at the end of life. Targeted palliative care involves identifying the patients most likely to benefit from specialist palliative care interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse-led palliative care, primary palliative care provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize palliative care to provide the right level of intervention, for the right patient, in the right setting, at the right time. CA Cancer J Clin. 2018;680:00-00. 2018 American Cancer Society, Inc.
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Cuidadores , Neoplasias/terapia , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Grupo de Atención al Paciente , Atención Ambulatoria , Atención a la Salud , Medicina Basada en la Evidencia , Humanos , Oncólogos , Rol del Médico , Calidad de Vida , Derivación y Consulta , Tiempo de TratamientoRESUMEN
Cardiac rehabilitation (CR) is a guideline-recommended, multidisciplinary program of exercise training, risk factor management, and psychosocial counseling for people with cardiovascular disease (CVD) that is beneficial but underused and with substantial disparities in referral, access, and participation. The emergence of new virtual and remote delivery models has the potential to improve access to and participation in CR and ultimately improve outcomes for people with CVD. Although data suggest that new delivery models for CR have safety and efficacy similar to traditional in-person CR, questions remain regarding which participants are most likely to benefit from these models, how and where such programs should be delivered, and their effect on outcomes in diverse populations. In this review, we describe important gaps in evidence, identify relevant research questions, and propose strategies for addressing them. We highlight 4 research priorities: (1) including diverse populations in all CR research; (2) leveraging implementation methodologies to enhance equitable delivery of CR; (3) clarifying which populations are most likely to benefit from virtual and remote CR; and (4) comparing traditional in-person CR with virtual and remote CR in diverse populations using multicenter studies of important clinical, psychosocial, and cost-effectiveness outcomes that are relevant to patients, caregivers, providers, health systems, and payors. By framing these important questions, we hope to advance toward a goal of delivering high-quality CR to as many people as possible to improve outcomes in those with CVD.
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Rehabilitación Cardiaca , Enfermedades Cardiovasculares , Humanos , Rehabilitación Cardiaca/métodos , Lagunas en las Evidencias , Enfermedades Cardiovasculares/terapia , CuidadoresRESUMEN
BACKGROUND: Stroke survivors with limitations in activities of daily living (ADL) have a greater risk of experiencing falls, hospitalizations, or physical function decline. We examined how informal caregiving received in hours per week by stroke survivors moderated the relationship between ADL limitations and adverse outcomes. METHODS: In this retrospective cohort, community-dwelling participants were extracted from the National Health and Aging Trends Study (2011-2020; n=277) and included if they had at least 1 formal or informal caregiver and reported an incident stroke in the prior year. Participants reported the amount of informal caregiving received in the month prior (low [<5.8], moderate [5.8-27.1], and high [27.2-350.4] hours per week) and their number of ADL limitations (ranging from 0 to 7). Participants were surveyed 1 year later to determine the number of adverse outcomes (ie, falls, hospitalizations, and physical function decline) experienced over the year. Poisson regression coefficients were converted to average marginal effects and estimated the moderating effects of informal caregiving hours per week on the relationship between ADL limitations and adverse outcomes. RESULTS: Stroke survivors were 69.7% White, 54.5% female, with an average age of 80.5 (SD, 7.6) years and 1.2 adverse outcomes at 2 years after the incident stroke. The relationships between informal caregiving hours and adverse outcomes and between ADL limitations and adverse outcomes were positive. The interaction between informal caregiving hours per week and ADL limitations indicated that those who received the lowest amount of informal caregiving had a rate of 0.12 more adverse outcomes per ADL (average marginal effect, 0.12 [95% CI, 0.005-0.23]; P=0.041) than those who received the highest amounts. CONCLUSIONS: Informal caregiving hours moderated the relationship between ADL limitations and adverse outcomes in this sample of community-based stroke survivors. Higher amounts relative to lower amounts of informal caregiving hours per week may be protective by decreasing the rate of adverse outcomes per ADL limitation.
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Actividades Cotidianas , Cuidadores , Accidente Cerebrovascular , Sobrevivientes , Humanos , Femenino , Masculino , Anciano , Accidente Cerebrovascular/epidemiología , Cuidadores/psicología , Estudios Retrospectivos , Anciano de 80 o más Años , Hospitalización , Persona de Mediana Edad , Accidentes por Caídas , Vida IndependienteRESUMEN
BACKGROUND: Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. METHODS: Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. RESULTS: Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (ß, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (ß, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (ß, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (ß, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. CONCLUSIONS: Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.
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Cuidadores , Americanos Mexicanos , Accidente Cerebrovascular , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Cuidadores/psicología , Americanos Mexicanos/psicología , Accidente Cerebrovascular/etnología , Accidente Cerebrovascular/enfermería , Accidente Cerebrovascular/psicología , Texas/epidemiología , BlancoRESUMEN
Research regarding caregivers for individuals with Down syndrome mainly focuses on outcomes for the pediatric population and not on the experience of caregivers themselves. Our objective was to understand caregiver-reported experiences and concerns for themselves and the individual they care for through a survey of caregivers of adults with Down syndrome. We conducted a survey of N = 438 caregivers of adults with Down syndrome and asked about the perspectives of the respondents surrounding caregiving and demographics. The most common concerns among caregivers were planning for future needs (72.1%) and what happens when they (the caregiver) are gone (68.3%). Concerns they had for the individual they cared for were employment (63.2%) and friendships/relationships (63.2%). We found no significant difference in responses based on caregiver education level. Our survey identified six themes for the feedback about what clinical and research professionals should know to better serve individuals with Down syndrome, their families, and those who support them. Many caregivers discussed topics including healthcare, coordination, competence, and ability. More efforts for research into the caregiver experience for adults with Down syndrome are needed.
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Cuidadores , Síndrome de Down , Adulto , Humanos , Niño , Encuestas y CuestionariosRESUMEN
Patients with Down syndrome have significant specialized health care needs. Our objective was to understand the needs, satisfaction, and online habits of caregivers as they care for persons with Down syndrome. A mixed-method survey was distributed through REDCap from April 2022 to June 2022 in the United States; a Spanish-translated version was distributed through SurveyMonkey from August 2022 to March 2023 in Mexico. We received 290 completed responses from the United States and 58 from caregivers in Mexico. We found that current health care options are not meeting the needs of many individuals with DS in both the United States (39.7%) and Mexico (46.6%). Caregivers expressed frustrations with the inaccessibility and inapplicability of health care information. In particular, they often found the volume of information overwhelming, given their limited medical background. Additionally, health care recommendations were not customized and lacked practical recommendations. Most caregivers in both the United States (72.1%) and Mexico (82.8%) believe it is not easy to find answers to medical questions about their loved ones with DS. Online platforms with customized, specific health information related to DS could offer innovative solutions to these unmet needs for families and primary care providers.
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Cuidadores , Síndrome de Down , Humanos , Estados Unidos , Alfabetización , Atención a la Salud , Satisfacción PersonalRESUMEN
The Pediatric Integrated Care Survey (PICS) is validated for use to measure the caregiver reported experience of integration and efficiency of all the aspects of their child. We began using the PICS survey to track changes in the patient experience, including throughout changing models of care during the COVID-19 pandemic. From February 2019 to June 2023, 62 responses from caregivers of individuals seen in the Massachusetts General Hospital Down Syndrome Program completed the PICS. Responses were scored using the standardized PICS user manual, and descriptive statistics were completed. The raw scores and composite monthly scores of the PICs were graphed in statistical process control charts. The average PICS score was 12.0 (range 2-19) out of a maximum score of 19; no shifts or trends were seen. Items with lowest scores indicated greatest opportunities for improvement related to: advice from other care team members, impact of decisions on the whole family, things causing stress or making it hard because of child's health, and offering opportunities to connect with other families. Studying the PICS in a specialty clinic for Down syndrome for the first time has established a baseline for future quality improvement work and interventions to increase care integration.
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Prestación Integrada de Atención de Salud , Síndrome de Down , Niño , Humanos , Síndrome de Down/epidemiología , Síndrome de Down/terapia , Pandemias , Encuestas y Cuestionarios , CuidadoresRESUMEN
Patient navigator programs may improve outcomes among individuals with chronic kidney disease by reducing barriers to evidence-based care. The NAVKIDS2 trial evaluated a patient navigation program among 162 children with chronic kidney disease from marginalized populations. The intervention was not associated with quantitative changes in self-reported health, but qualitative data indicated substantial benefit in alleviating caregiver strain and facilitating care coordination. Future studies should identify quantitative measures that capture the benefits experienced by patients in care coordination, empowerment, and self-management.
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Navegación de Pacientes , Insuficiencia Renal Crónica , Humanos , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/diagnóstico , Niño , Femenino , Masculino , Adolescente , Cuidadores/psicología , Cuidadores/estadística & datos numéricos , Resultado del TratamientoRESUMEN
Patient navigators enable adult patients to circumnavigate complex health systems, improving access to health care and outcomes. Here, we aimed to evaluate the effects of a patient navigation program in children with chronic kidney disease (CKD). In this multi-center, randomized controlled trial, we randomly assigned children (aged 0-16 years) with CKD stages 1-5 (including children on dialysis or with kidney transplants), from low socioeconomic status backgrounds, and/or residing in remote areas, to receive patient navigation at randomization (immediate) or at six months (waitlist). The primary outcome was self-rated health (SRH) of participating children at six months, using intention to treat analysis. Secondary outcomes included caregivers' SRH and satisfaction with health care, children's quality of life, hospitalizations, and missed school days. Repeated measures of the primary outcome from baseline to six months were analyzed using cumulative logit mixed effects models. Semi-structured interviews were thematically evaluated. Of 398 screened children, 162 were randomized (80 immediate and 82 waitlist); mean age (standard deviation) of 8.8 (4.8) years with 64.8% male. SRH was not significantly different between the immediate and wait-listed groups at six months. There were also no differences across all secondary outcomes between the two groups. Caregivers' perspectives were reflected in seven themes: easing mental strain, facilitating care coordination, strengthening capacity to provide care, reinforcing care collaborations, alleviating family tensions, inability to build rapport and unnecessary support. Thus, in children with CKD, self-rated health may not improve in response to a navigator program, but caregivers gained skills related to providing and accessing care.
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Navegación de Pacientes , Calidad de Vida , Insuficiencia Renal Crónica , Humanos , Masculino , Femenino , Niño , Navegación de Pacientes/organización & administración , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/psicología , Adolescente , Preescolar , Lactante , Cuidadores/psicología , Accesibilidad a los Servicios de Salud/organización & administración , Satisfacción del Paciente , Recién Nacido , Diálisis Renal , Trasplante de RiñónRESUMEN
BACKGROUND: Communication between caregivers and clinical team members is critical for transitional care, but its quality and potential impact on outcomes are not well understood. This study reports on caregiver-reported quality of communication with clinical team members in the postpancreatectomy period and examines associations of these reports with patient and caregiver outcomes. METHODS: Caregivers of patients with pancreatic and periampullary malignancies who had undergone pancreatectomy were surveyed. Instrument measures assessed care experiences using the Caregiver Perceptions About Communication with Clinical Team Members (CAPACITY) instrument. The instrument has two main subscales: communication, assessing the extent to which providers helped caregivers comprehend details of clinical visits, and capacity, defined as the extent to which providers assessed whether caregivers were able to care for patients. RESULTS: Of 265 caregivers who were approached, 240 (90.6%) enrolled in the study. The mean communication and capacity subscale scores were 2.7 ± 0.6 and 1.5 ± 0.6, respectively (range, 0-4 [higher = better]). Communication subscale scores were lower among caregivers of patients who experienced (vs. those who did not experience) a 30-day readmission (2.6 ± 0.5 vs. 2.8 ± 0.6, respectively; p = .047). Capacity subscale scores were inversely associated with restriction in patient daily activities (a 0.04 decrement in the capacity score for every 1 point in daily activity restriction; p = .008). CONCLUSIONS: After pancreatectomy, patients with pancreatic and periampullary cancer whose caregivers reported worse communication with care providers were more likely to experience readmission. Caregivers of patients with greater daily activity restrictions were less likely to report being asked about the caregiver's skill and capacity by clinicians. PLAIN LANGUAGE SUMMARY: This prospective study used a validated survey instrument and reports on the quality of communication between health care providers and caregivers as reported by caregivers of patients with pancreatic and periampullary cancer after pancreatectomy. In an analysis of 240 caregivers enrolled in the study, lower communication scores (the extent to which providers helped caregivers understand clinical details) were associated with higher odds of 30-day patient readmission to the hospital. In addition, lower capacity scores (the extent to which providers assessed caregivers' ability to care for patients) were associated with greater impairment in caregivers. The strikingly low communication quality and capacity assessment scores suggest substantial room for improvement, with the potential to improve both caregiver and patient outcomes.
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Cuidadores , Comunicación , Pancreatectomía , Neoplasias Pancreáticas , Humanos , Neoplasias Pancreáticas/cirugía , Cuidadores/psicología , Masculino , Femenino , Persona de Mediana Edad , Anciano , Adulto , Ampolla Hepatopancreática , Encuestas y Cuestionarios , Readmisión del Paciente/estadística & datos numéricos , Neoplasias del Conducto Colédoco/cirugíaRESUMEN
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.
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Aflicción , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Tutoría , Neoplasias , Femenino , Humanos , Cuidadores/psicología , Familia/psicología , Cuidados Paliativos al Final de la Vida/psicología , Neoplasias/terapiaRESUMEN
Medication nonadherence is a leading cause of graft loss. Adherence monitoring technologies-reminder texts, smart bottles, video-observed ingestion, and digestion-activated signaling pills-may support adherence. However, patient, care partner, and clinician perceptions of these tools are not well studied. We conducted qualitative individual semistructured interviews and focus groups among 97 participants at a single center: kidney and liver transplant recipients 2 weeks to 18 months posttransplant, their care partners, and transplant clinicians. We assessed adherence practices, reactions to monitoring technologies, and opportunities for care integration. One-size-fits-all approaches were deemed infeasible. Interviewees considered text messages the most acceptable approach; live video checks were the least acceptable and raised the most concerns for inconvenience and invasiveness. Digestion-activated signaling technology produced both excitement and apprehension. Patients and care partners generally aligned in perceptions of adherence monitoring integration into clinical care. Key themes were importance of routine, ease of use, leveraging technology for actionable medication changes, and aversion to surveillance. Transplant clinicians similarly considered text messages most acceptable and video checks least acceptable. Clinicians reported that early posttransplant use and real-time adherence tracking with patient feedback may facilitate successful implementation. The study provides initial insights that may inform future adherence technology implementation.
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Cuidadores , Trasplante de Riñón , Humanos , Receptores de Trasplantes , Cumplimiento de la MedicaciónRESUMEN
BACKGROUND: Dementia Actif provides group physical activity opportunities to support and enhance the quality of life for people living with dementia (PLWD) and their carers. The activities offer include physical exercise classes, Boccia league, online activities, and various clubs (eg, gardening). The overall aim of this study was to evaluate the Dementia Actif programme delivered in one local authority area in North Wales, UK. METHODS: A mixed-methods evaluation of Dementia Actif focused on four key workstreams (WS). Data collection took place between January and June, 2023. WS1 consisted of a rapid literature review. The search included articles and grey literature published between 2012 and 2022. All study designs were included, with keywords limited to the English Language. CINAHL (EBSCO), PsycInfo, ProQuest, PubMed, Web of Science were searched. WS2 consisted of interviews and focus groups with professional stakeholders (n=32) from Health, Social Care, and Third Sector services who refer PLWD to Dementia Actif, within one local authority area in North Wales. WS3 consisted of researcher observation of activities delivered by the Dementia Actif Service , including exercise classes and wellbeing activities within leisure centres across the local authority area. WS4 consisted of interviews with PLWD and their carers (n=12) who accessed Dementia Actif, including analysing specific case studies. FINDINGS: Following the screening process, the final literature sample included 18 papers. The sample papers, from the UK, USA, and Canada, were reviewed and analysed to inform the findings. The findings from the rapid literature review showed a lack of global evidence of approaches focused on measuring social interaction, wellbeing, and building on community assets to address the needs of PLWD and their unpaid carers. Results from SW2-WS4 indicated the positive impact of an active/wellbeing model for supporting PLWD and their carers, in particular the use of preventive community-based resources to support unpaid carers and reduce the need for admission to acute secondary and residential care. INTERPRETATION: The analysis indicates the benefits of low-cost social activities on overall wellbeing outcomes, including giving PLWD and their carers voice, choice, and control over their own wellbeing outcomes to connect them with their community. This evaluation argues the potential to use Dementia Actif approaches to address complex needs. However, this was based on a small sample, which might impact on the broader applicability of the findings. FUNDING: Gwynedd County Council, North Wales.