Single Caregiver Research Articles

Care at door-steps for persons with severe mental disorders: A pilot experience from Karnataka district mental health program.

Public funded outreach services for persons with severe mental disorders (SMDs), a norm in developed nations, is non-existent in India. We share our pilot experience with an indigenous model named 'Care at Doorsteps' (CADs) for persons with SMDs who dropped out from clinical care of District Mental Health Program (DMHP) at three sites of Karnataka, a south Indian state. The objectives of this study were to identify the reasons for drop outs from routine care and to assess the burden of illness and disability after the intervention. Six-month prospective observational study on patients aged 18-60 years, diagnosed as Schizophrenia or bipolar disorder was conducted. Three home visits were made by the team and provided medications, also offered brief psychoeducation and counselling. Care-givers were interviewed to identify the reasons for drop outs and their expectations from the treating team. Patients were also assessed using the Clinical Global Impression Scale (CGI), Indian Disability Evaluation and Assessment Scale (IDEAS) and Burden Assessment Schedule (BAS) during each visit. Ninety-six patients (50 males and 46 females) were followed up, of which 85 had a diagnosis of schizophrenia and 11 with bipolar illness. Common reasons for drop out were: single caregiver (breadwinner) unable to accompany the patient, loss of faith in medical treatment and financial constraints. Symptomatic improvement and restoration of productive work were the priority expectations. Over the course, the mean CGI-S showed significant reduction (4.81 ± 1.57, 4.46 ± 1.32 and 4.11 ± 1.39 respectively; p = 0.001). Mean score on BAS showed a significant reduction (85.76 ± 12.15, 83.46 ± 11.30, 84.27 ± 11.82; p = 0.04). Mean total IDEAS scores did not show significant change (13.27 ± 4.78, 12.82 ± 4.24, 13.17 ± 4.40; p = 0.16). Meaningful assertive outreach care is feasible in India and is found to be useful for persons with SMDs by utilising the already existing public sector resources.

Racial Disparities in Elementary School Disciplinary Actions: Findings From the ABCD Study

Detentions and suspensions are common practices of school discipline, despite evidence that they are largely ineffective and disproportionately affect children from racial and ethnic minority backgrounds, particularly Black children, and children of lower socioeconomic status. However, few studies have examined suspension and detention rates among race, ethnicity, and family structure (single parent versus secondary caregiver) when controlling for typical behaviors associated with detention and suspension such as externalizing symptoms, age, sex, family income, family education, family conflict, and special education needs. Caregivers of 11,875 children between ages 9 and 10 years from the Adolescent Brain Cognitive Development (ABCD) study completed a questionnaire assessing their child's demographics, family information, emotions and behaviors, and past-year school discipline history. Data were analyzed with logistic regression, implemented with a generalized estimating equations model. 5.4% of children received a detention or suspension. Controlling for typical predictors of behaviors, Black and multiracial Black children had up to 3.5 times greater odds of receiving a detention or suspension than White children; there were no disciplinary differences for Hispanic or Asian children compared to White children. Children from single-parent households had 1.4 times the odds of receiving detentions or suspensions than children in homes with a secondary caregiver. Disciplinary actions that can impair typical childhood development, lead to academic failure and dropout, and cause significant emotional and psychological distress disproportionately affect Black children, multiracial Black children, and children from single-parent homes. Racism in elementary school discipline can perpetuate disparities in today's educational system.

Outpatient Transplantation during the COVID19 Pandemic: Stretching the Limits for Continuing Care

Introduction: COVID-19 has transformed stem cell transplantation (HSCT) dynamics throughout the world. Bone Marrow Transplantation units are facing many challenges complicating admission; deferrals in transplant schedules and even temporary closure. Delay in treatment may have a negative impact in outcomes. Outpatient care has been an alternative to hospital care in patients undergoing HSCT since the 1990s. Potential advantages include improved patient independence and satisfaction, improved quality of life, and less hospital resource utilization, which is of particular importance during this epidemic. In this prospective cohort study, we investigated the impact of the pandemic in our outpatient HSCT program.Objective: To describe the outcomes of patients undergoing ambulatory HSCT during the COVID-19 pandemic.Methods: Adults and children with any hematological disease undergoing any type of HSCT with an outpatient intent from March to July 2020 were included. All were required to have a Karnofsky score >70%, serum creatinine <2 mg/dL, temporary residence near the hospital, an adequate caregiver, with appropriate educational level and history of treatment adherence. All cases lacked alternative therapies and were discussed thoroughly and approved by our transplant committee. After infusion, patients stayed at home and were seen in the outpatient clinic every other day until hospitalization requirement or engraftment; afterward weekly and bi-weekly through day +100. Patients were instructed to stay at home isolation 14 days before the procedure, and to report the presence of fever, to notify any COVID-19 contact or symptoms including cough, rhinorrhea, conjunctivitis, diarrhea, and anosmia. All patients and caregivers were screened with questionnaires according to the updated COVID-19 case definition. Hand and respiratory hygiene were recommended for donors, receptors, and health workers. Proper personal protective equipment was used according to WHO guidelines. Only a single caregiver was allowed during outpatient visits and hospitalization.Results: Since the beginning of COVID-19 pandemic in Mexico (February 28th 2020) 21 HSCT have been conducted with ambulatory intent. Fourteen allogeneic (allo-HSCT, 66.6%) (10 haploidentical, 4 matched related donors) and 7 autologous (auto-HSCT) (33.3%%) transplants have been performed. The median age was 27 years (range, 3-70) for allogeneic HSCT and 30 years for autologous (range, 2-63). Acute leukemia (5 lymphoblastic, 5 myeloblastic) was the most common indication for allo-HSCT, and multiple myeloma for auto-HSCT. PCR for SARS-Cov2 was tested only in 1 receptor before the transplant, due to prior test unavailability in asymptomatic persons. Engraftment was achieved in all patients. All received conditioning as outpatients. Twelve (57.4%) were never hospitalized (4/7 auto and 8/14 allo-HSCT) with a median age of 32.5 (range, 16-70). For allo-HSCT median length of stay (LOS) was 2 days (range, 0-21) while for auto-HSCT was 0 days (range, 0-9). The most common reason for hospitalization was febrile neutropenia (n=6, 46%). A median of 7 visits per patient (4-14) were required until day +100 or last follow-up in the outpatient clinic and complemented with 4 (1-18) telemedicine consults. No one died from transplant related mortality. No cases of COVID19 were documented.Conclusion: Outpatient transplantation is a feasible alternative for performing HSCT during the COVID-19 pandemic minimizing the risk of infection and providing a safe environment for patients, donors, and healthcare providers.DisclosuresGomez-Almaguer:Amgen: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Novartis: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; AbbVie: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Janssen: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Celgene/BMS: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; AstraZeneca: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Pfizer: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Roche: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau.

Caregivers of Persons with Diverse Health Conditions: Demographics and Burden of Care.

Although caregiver identity theory asserts there is no single generic caregiver identity, comparisons on demographic characteristics and burden of care have not been made among caregivers of persons with various health conditions. Using social media to access study participants, this cross-sectional study of 234 family caregivers of persons with various health conditions examined their demographic characteristics (age, gender, and race/ethnicity) and burden of care (daily care hours and caregiving years) using online data collection. Nine groups of caregivers were formed by the care recipient's health condition. Caregiver groups were similar in gender (95% women) and race/ethnicity (88% white), and differed on age (F=4.74; p<.001) daily care hours, and caregiving years (F's=2.76 and 2.84; p<.01). The findings suggest that caution is needed when recruiting caregivers through social media as the sample may not represent all caregivers. However, differences by care recipient condition on age and burden of care warrant further consideration.

Caregiver Status and Diet Quality in Community Dwelling Older Adults

Abstract Objectives Prior studies on caregivers have focused mainly on the diet quality of their recipients, especially children. We investigated both cross-sectional and longitudinal associations of caregiver status and diet quality in older adults (mean 53.0 ± 9.0 years). Methods We studied participants in the Healthy Aging in Neighborhoods of Diversity across the Life Span (HANDLS) study (57.7% women, 62% African American) between wave 3 (2009–2013) and wave 4 (2013–2018). Caregiving was assessed at both waves, starting at wave 3. Healthy Eating Index-2010 (HEI2010) score, a measure of diet quality, was assessed from two 24-hour recalls at each wave on both occasions (mean 4.1 years follow-up). Baseline caregiving (at wave 3) was examined in relation to change in HEI between waves 3 and 4. Multivariable linear regression was performed for cross-sectional analysis; mixed-effects regression was performed for longitudinal analyses. Results are expressed as β-coefficients ± standard error of means (β±SE). Results After adjusting for age, sex, race and poverty status, more time spent taking care of grandchildren (N = 2033) was associated with poor diet quality (–1.51 ± 0.55, P = 0.006) in cross-sectional analysis (wave 4 caregiving and wave 4 HEI). However, in a separate cross-sectional analysis (wave 4 only) on dual (caring for both grandchildren and an elderly person) vs. single caregivers (either grandchildren or elderly) (N = 73; 24 men &amp; 49 women) we found no difference in diet quality. The longitudinal analyses (N = 1848) demonstrated that diet quality did not change with caregiving over time for either grandchildren (P = 0.16) or others (not children &amp; grandchildren) (P = 0.88). Overall, women tended to have better quality diet (P &amp;lt; 0.001) than men. Conclusions Among relatively older caregivers, cross-sectional analyses revealed an inverse effect of caregiving with diet quality. Longitudinal research is needed to evaluate the temporal associations of dual caregiving with subsequent diet quality changes over time. Funding Sources The first author is supported by a Postdoctoral Fellowship from the Intramural Research Program (IRP) at the National Institute on Aging (NIA). HANDLS is supported by the Intramural Research Program, National Institute on Aging, National Institutes of Health, grant Z01-AG000513.

How does poverty differ among refugees? Taking a gender lens to the data on Syrian refugees in Jordan

ABSTRACT Many reports document the hardships experienced by refugees, highlighting that women and children are a highly vulnerable group. However, empirical analysis of how gender inequality impacts poverty among refugees is limited. We combine registration data for Syrian refugees in Jordan collected by the United Nations High Commissioner for Refugees with data from its Home Visit surveys to analyze income poverty rates among refugee households. We use an approach that captures the disruption to household structures that results from displacement to evaluate the poverty impacts, comparing refugee households with male and female principal applicants (PAs). We find that distinguishing between different types of principal applicant households is important. Half of the female PAs for nonnuclear households live below the poverty line compared to only one-fifth of male PAs for nonnuclear household. PAs who are widows and widowers also face high poverty risks. Households that have formed because of the unpredictable dynamics of forced displacement, such as unaccompanied children and single caregivers, emerge as extremely vulnerable groups. We show that differences in household composition and individual attributes of male and female PAs are not the only factors driving increased poverty risk. Gender-specific barriers which prevent women accessing labor markets are also a factor. Our findings show that gender inequality amplifies the poverty experienced by a significant number of refugees. Our approach can be used to help policy-makers design more effective programs of assistance and find durable solutions for displaced populations.

Compound sibling caregivers of individuals with intellectual and developmental disabilities.

Given the increasing lifespans of individuals with intellectual and developmental disabilities (IDD), siblings may fulfil multiple caregiving roles simultaneously for their ageing parents, their offspring, and their brother or sister with IDD. Yet, little is known about compound sibling caregivers. The purpose of this study was to compare the perspectives of compound, single and non-caregiving siblings of adults with IDD. This study investigated 332 adult siblings of individuals with IDD in the United States via a national web-based survey. Participants included: 152 non-caregivers, 94 single caregivers (i.e., caregivers only for their brothers and sisters with IDD), and 86 compound caregivers (i.e., caregivers for their brothers and sisters with IDD and at least one other vulnerable individual). Single and compound sibling caregivers (versus non-caregivers) had more positive relationships and conducted greater advocacy and future planning activities. Given the potential for compound sibling caregiving, further investigation is warranted.

COVID-19 in India: Moving from containment to mitigation.

COVID-19 in India: Moving from containment to mitigation.

A NEW FEATURE OF JAPANESE CAREGIVING? COMPOUND CAREGIVING OF OLDER ADULTS IN AN AGING SOCIETY WITH FEWER CHILDREN

Due to the combined effects of longevity of aging parents, fewer children, and caregiving traditions, family members face multiple caregiving responsibilities in Japan. This study examined the emergence of compound caregiving--providing care to multiple adults-- and the relationship of caregiving status to burden, depression, and social support. Data were from the Fukui Longitudinal Caregiver Study, a survey of family caregivers to older Japanese adults who received long-term care services. We analyzed data from 2,025 caregivers whose mean age was 63 years old. Results showed that 9.5% of caregivers provided care for more than two care recipients. Compared to single caregivers, compound caregivers were more significantly burdened. Compound caregivers who reported higher instrumental and informational support from live-in family and higher emotional support from friends showed significantly lower caregiving burden. We discuss how traditional caregiving norms and demographic changes lead to new needs for family support in Japan’s aging society.

A New Methodology for Use by a Single Caregiver to Bathe Bedridden Elderly Persons Using Advanced Mechatronic Systems.

In the framework of this paper, we aimed to propose a methodology for giving baths to elderly, bedridden persons, when this task is performed by a single caregiver. Usually, two caregivers are required for nursing a bedridden patient, especially when certain important tasks are needed (e.g., bathing the patient), but this is not always possible. The entire study considers the primary user’s perspective—the caregiver—who is responsible for a wide range of tasks; thus, suffering physical and psychological exhaustion over time. A physical prototype has been developed for allowing caregivers to perform tests in a life-like environment, by means of the device and the methodology. This technology, therefore, will represent an important contribution to the quality of life of caregivers. Considering an increase in the share of the elderly population and the related problems that arise in daily care, this project intends to be beneficial contemporarily. The presented methodology has been successfully tested and validated.

Sleep Quality in Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders: A Case-Control Study

ABSTRACT Objectives Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods We performed a case–controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers’ age and marital status were the only significant predictors in the final model. Conclusions Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers’ subjective sleep quality. Clinical Implications Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.

Cumulative socio-demographic risk factors and sleep outcomes in early childhood

To examine associations between cumulative socio-demographic risk factors, sleep health habits, and sleep disorder symptoms in young children. Two hundred five caregiver-child dyads (child mean age ± SD: 3.3 ± 1.1 years; 53.7% girls; 62.9% black, 22.4% non-Hispanic/Latinx white, 4.4% Hispanic/Latinx; 85.4% maternal caregiver reporter) completed caregiver-rated sleep measures (Brief Child Sleep Questionnaire [BCSQ]; Pediatric Sleep Questionnaire [PSQ] snoring subscale), which were used to generate indexes of poor sleep health habits, pediatric insomnia symptoms, and obstructive sleep apnea (OSA) symptoms. A cumulative risk index was created reflecting caregiver, family, and neighborhood risks. Overall, 84.5% of children had ≥ 1 poor sleep health habit, 62.9% had ≥ 1 insomnia symptom, and 40.0% had ≥ 1 OSA symptom. Poisson regression indicated that each increase in the number of cumulative risk factors was associated with a 10% increase in poor sleep health habits, a 9% increase in insomnia symptoms, and an 18% increase in OSA symptoms. Specific caregiver risks (depressive symptoms, lower educational attainment) and family risks (single caregiver, crowded home) were most predictive of poor sleep outcomes. Poor sleep health habits and sleep disorder symptoms are highly prevalent in early childhood, particularly among families experiencing cumulative socio-demographic risks. Findings underscore the need for targeted screening and prevention for modifiable sleep behaviors and efforts to tailor such strategies for at-risk children and families, especially those living in crowded conditions, or with caregivers who are single or have a lower educational attainment or depressive symptoms.

Evaluation of the Burden of Care and the Quality of Life in the Parents of Turkish Children with Familial Mediterranean Fever

PurposeThis study aimed to determine the burden of care and the quality of life in caregivers of children with FMF. Design and methodsA cross-sectional study was conducted. Caregivers of the 109 children with FMF followed by a pediatric nephrology department were invited to join the study. Besides demographic information, the Zarit Care Burden Scale (ZCBS) and the World Health Organization Quality of Life Questionnaire-Short Form (WHOQOL-BREF) were used to collect data. Results for 90 patients were analyzed. ResultsThe mean (±SD) ZCBS score of the caregivers was 44.78 ± 13.55. Care burden of the caregivers according to the ZCBS was categorized as; 61.1% (n = 55) mild, 25.6% (n = 23) moderate, and 13.3% (n = 12) severe. Although single caregivers were perceived as having a relatively higher burden than those who were married (80% and 36%), this difference was not significant. There were no statistically significant differences between ZCBS categories concerning caregivers' gender, educational status, and having comorbidities (p > 0.05). Also, there were no significant correlations between ZCBS and the WHOQOL-BREF domains (p > 0.05). ConclusionThis study showed that the quality of life of the caregivers of children with FMF was not adversely affected, but a significant number of caregivers perceived care burden in moderate severity. Attention should be paid to the needs of caregivers, and they should be provided with adequate social, economic, physical, and psychological support. Practice implicationResponsive strategies to support caregivers' should be taken as means of social, economic, physical, and psychological needs.

Profile of cancer caregivers among adult Indian rural cancer patients: A prospective survey.

e18019 Background: There is lack of information regarding Cancer Caregivers who play predominant role in assisting patients during active treatment and follow –up in India. Aim: To identify profile of cancer caregivers Objectives: To identify, social, economic, familial variables of cancer caregivers of adult cancer patients by prospective survey/questionnaire. Methods: All consecutive individual adult (age≥18 years) patients diagnosed with cancer and registered in Medical Oncology OPD were enrolled for Cancer caregiver questionnaire based survey between July 2018 and October 2018.Primary caregiver was defined as person of first degree relative who has greatest responsibility of daily patient care. Patient was asked to name single preferred primary caregiver in case of multiple first degree relatives available. Results: Of 517 patients enrolled, 456 (88%) were rural.491 (95%) had primary caregivers, while 26(5%) had secondary caregivers only. 295(57%) had 3-4 caregivers, while 117 (23%) had 5-7 caregivers in predominantly joint family population (75%). Among primary caregivers, son 287 (58%) was the preferred choice, followed by brothers, 50 (10%). Only 61 (12%), chose female as primary caregivers. Only 36/281 (13%) married men and 71/215 (33%) married women chose their spouse as primary caregiver. 326 (63%) of primary caregivers had monthly income equivalent to $70-140, while 16% and 9% had between $140-280 and less than $70 respectively.131 (25%) of caregivers were graduate,186 (35%) passed secondary school, while only 25 (4.8%) were illiterate. Conclusions: Majority of rural Indian cancer patients have access to multiple caregivers. Young males are the preferred choice as primary caregiver. Primary caregivers are economically poor but literate.

SAT-100 Trial-in-Progress: ZEPHYR, a Pivotal Phase 2b/3 Randomized, Placebo-Controlled Study of Livoletide, a Novel Unacylated Ghrelin Analog, for the Treatment of Hyperphagia and Food-Related Behaviors in Patients with Prader-Willi Syndrome

Background: Prader-Willi syndrome (PWS) is a rare and complex endocrine disease characterized by hyperphagia and abnormal food-related behaviors that contribute to severe morbidity and early mortality and to a significant burden on patients and caregivers. There is no approved treatment for hyperphagia in PWS. Patients with PWS have increased circulating levels of the orexigenic hormone acylated ghrelin (AG) with a relative deficit of unacylated ghrelin (UAG). Livoletide (AZP-531) is a first-in-class UAG analog that was previously shown in a Phase 2 randomized placebo-controlled study in a 47-patient PWS cohort to significantly improve hyperphagia, food related behaviors, and metabolic parameters and to be well-tolerated with no serious adverse events or treatment discontinuations over a 14-day period. [Allas S et al. (2018) PLoS ONE 13(1): e0190849] Objective: ZEPHYR (EudraCT 2018-003062-13) is a pivotal Phase 2b/3 study that is designed to evaluate the long-term safety and efficacy of livoletide in patients with PWS. Methods: The ZEPHYR study will be conducted in centers in North America and Europe. In its Phase 2b portion, approximately 150 patients with PWS will be randomized in a 1:1:1 ratio to receive livoletide low exposure (8 mg/mL), livoletide high exposure (16 mg/mL), or placebo, once a day by sc injection for a three-month core period. Then, patients who received placebo will cross over to livoletide low or high exposure and be treated for 9 months. Patients who received livoletide will continue at their original dose for an additional 9 months. The Phase 3 portion will be initiated following results of the Phase 2b core period with patients randomized 1:1 to livoletide at a dose based on Phase 2b core data or to placebo for a six-month duration. Subsequently, patients who received placebo will be crossed over to livoletide for six months, while patients on livoletide initially will continue for six more months. Main entry criteria for ZEPHYR include genetic diagnosis of PWS, age 8-65 years, single primary caregiver available for the duration of the study, BMI ≤65 kg/m2 for adult patients. Patients with type 2 diabetes with HbA1C ≤10% and stable therapy may be enrolled. Use of human growth hormone will be allowed if dosage is stable. Patients enrolled in Phase 2b will not be eligible for Phase 3. The primary outcome measure is the Hyperphagia Questionnaire-Clinical Trials (HQ-CT) score. The HQ-CT has been validated and is considered by regulatory authorities as a valid primary endpoint. Secondary outcome measures include fat mass as assessed by DEXA, BMI, and body weight in overweight/obese patients. Results: The study is ongoing: enrollment began in early 2019 and an updated status will be reported. Conclusion: ZEPHYR is a pivotal study that will provide data on the long-term safety and efficacy on hyperphagia and food-related behaviors of the novel UAG analog livoletide in patients with PWS.

The aging of families with members with intellectual disabilities.

to understand the structure and dynamics of families in the late stage of the life cycle that have a member with intellectual disability. qualitative research using the Calgary Family Assessment Model as methodological framework. The study had 38 participants, distributed into 10 families that had a member with intellectual disability and whose parents were elderly. The interviews were analyzed with content analysis technique. the following analytical categories were evidenced: "living with intellectual disability", "communication as a strategy for encounter", "family isolation and the need for support" and "concerns about care in the future". families in the late life cycle who had a member with intellectual disability are arranged in a structure that overloads a single caregiver (mother), has little support network, uses communication as an instrument for understanding themselves and the other, besides having difficulties in projecting the future.

Content Validation of Sickle Cell Pain Diaries for Caregivers: Results from Interviews with Caregivers

Background:Sickle Cell Disease (SCD) is a genetic, progressive, vascular disease that affects approximately 100,000 children and adults in the US. Vaso-occlusive crises (VOCs), also referred to as pain crises, are a primary complication of SCD. VOCs are caused by several factors, including inflamed, damaged vasculature and increased cellular adherence to the endothelium and other cells, resulting in occlusion of the microvascular systems. VOCs have been associated with increased morbidity and mortality.Healthcare visit data partially reflect VOC and SCD outcomes for children and provide understanding of healthcare resource utilization (HCRU), but miss the breadth and depth of the burden of SCD, and fail to capture daily variations of pain and other quality of life (QoL) concepts. This is particularly problematic for children, who may experience less frequent VOCs and may have lower HCRU, but will likely experience progressive non-VOC SCD-related symptoms and impacts as they age. Further, evaluating HCRU data underestimates the burden of SCD; patients who avoid seeking care outside the home are not represented.The Sickle Cell Pain Diary - Caregiver Report (SCPD-C) is a daily observer-reported outcome (ObsRO) measure for use with caregivers of patients with SCD under 12. Two diary versions were developed for SCD caregivers: one for school age children (SCPD-CS) and one for non-school age children (SCPD-CN). The diaries were designed to capture the frequency and severity of pain during and outside of a VOC and to examine the impact of SCD-related pain on other QoL concepts. The objective of this study was to investigate the content validity of the SCPD-CS and SCPD-CN.Methods:Two rounds of 90-minute in-depth, hybrid concept elicitation and cognitive debriefing (CD) interviews and one round of 60-minute CD interviews (N=22) were conducted in person (n=8) and by phone (n=14) with caregivers of SCD patients aged ≤11. Interviewers used a semi-structured guide to explore concepts relevant to caregivers' observations of VOC in children, and to test the diaries.The CD portion of the interviews required caregivers to state their thoughts while reading the diary aloud; interviewers elicited feedback on the diary instructions, recall period, items, and response choices. All interviews were recorded, transcribed, coded and analyzed.Results:Round 1 interviews (N=6), confirmed the relevance of the SCPD-C for most caregivers; however, several items were reported as not relevant for patients aged ≤3 years. Therefore the SCPD-C was split into the SCPD-CS for school age children and SCPD-CN for non-school age children. Other changes resulting from round 1 included: adding 8 items, removing 1, and wording edits for clarity and consistency.In round 2 interviews (N=3), only the SCPD-CS was tested and 2 items were added for electronic programming purposes. Round 3 (N=13) tested both the revised SCPD-CS and the SCPD-CN. Caregivers confirmed the relevance and comprehensibility of both diaries; no new items were added. Minor wording revisions were made to improve readability. Final changes to the diaries included adding skip logic to ensure transition to an electronic format. Saturation analyses revealed that no additional interviews were needed.Conclusions:This study provided evidence that supports the content validity of the SCPD-CS (formerly SCPD-C) and SCPD-CN, observer-reported daily diaries focused on capturing daily variations of pain in SCD. While we intended to evaluate the content validity of a single caregiver diary (SCPD-C) for SCD patients aged ≤11 years, we found that two versions were required to accurately capture caregivers' perspectives relative to their child's age and school attendance status. Evidence gathered during caregiver interviews indicated that the SCPD-CS and SCPD-CN are valuable measures of VOC-related pain frequency and severity and the impact of this pain on other QoL concepts including fatigue and emotional health. In addition, the diaries capture the QoL of patients outside of HCRU, providing a more holistic view of the impact of VOCs and SCD. Future work includes development of scoring algorithms and user's manuals, and conducting psychometric validation. Use of the diaries in clinical trials with caregivers of patients who experience VOCs is anticipated, to capture the QoL impacts of new interventions designed to reduce the frequency and intensity of VOCs DisclosuresBailey:Novartis: Employment. Stebbins:Optum: Employment; Novartis: Research Funding. D'Alessio:Novartis: Employment. Mitchell:Optum: Employment; Novartis: Research Funding. Saucier:Optum: Employment; Novartis: Research Funding. White:Optum: Employment; Akcea: Research Funding.

Análisis de la sobrecarga del cuidador del paciente en diálisis

Objetivo: Revisar la literatura científica existente sobre la sobrecarga del cuidador principal del paciente en diálisis. Método: Se realizó una búsqueda en las bases de datos PubMed, Proquest, Scopus y Google Académico. Se incluyeron artículos científicos escritos en inglés y español. Se analizaron los artículos que trataban sobre la sobrecarga de los cuidadores principales, excluyendo aquellos artículos que no presentaran resultados y aquellos donde los pacientes no estaban sometidos a diálisis. Resultados: Se incluyeron 19 artículos publicados entre 2010 y 2018. La sobrecarga aparece en la mayoría de los cuidadores, en mayor o menor grado. La mayoría de los cuidadores son mujeres con una edad entre 40 y 70 años, hijas/os o esposas/os y una mayoría con estudios primarios o sin estudios. Las variables más influyentes en la aparición de la sobrecarga del cuidador del paciente en diálisis son: mayor dependencia del paciente, mayor supervivencia del mismo en el tratamiento dialítico y tener menor apoyo social. También presentan mayor sobrecarga las cuidadoras hijas de los pacientes, las cuidadoras/es solteras/os, las cuidadoras jóvenes o mayores. Conclusiones: La sobrecarga está presente en la mayoría de cuidadores del paciente en diálisis, predominando los grados moderado y leve de sobrecarga. El cuidador principal suele ser mujer, de mediana edad, con un parentesco de hijas/os o esposas/os. Mayor dependencia y supervivencia del paciente en diálisis y menor apoyo social parecen ser las variables más influyentes en la aparición de sobrecarga. La técnica dialítica no parece influir en la sobrecarga del cuidador del paciente en diálisis.

Affective improvement of neurological disease patients and caregivers using an automated telephone call service

Neurological disease patients living alone or with a single caregiver need a support system to care for their psychological symptoms. We evaluated the clinical effects of a unique telephone call system that automatically called participants at their desired times once a week for 3 months. In total, 104 neurological disease patients and caregivers were evaluated by the geriatric depression scale, apathy scale and state and trait anxiety inventories (STAI) forms X-I for depression, apathy and state anxiety, respectively. High baseline STAI scores (40≥) significantly improved in the Parkinson’s disease (PD), amyotrophic lateral sclerosis (ALS), and spinocerebellar degeneration (SCD) + multiple system atrophy (MSA) patients (p = 0.001, p = 0.013 and p = 0.046, respectively) after patients/caregivers used the telephone call service. The baseline (pre) STAI score significantly correlated with the score change (post-pre) in PD, ALS, SCD + MSA, Alzheimer’ s disease patients (ADp), and caregivers for ADp (p < 0.0001, p = 0.001, p = 0.011, p = 0.025 and p = 0.020, respectively). The geriatric depression scale and apathy scale did not significantly improve. The present study suggests that there is a positive effect of using an automated telephone call service for anxiety in neurological disease patients and caregivers, especially in ALS, SCD + MSA and PD patients with high STAI scores (40≥).

Digital Photography: a Tool for Nursing on the Assessment of Pressure Lesions

This work sought to assess the inter-observer agreement among expert nurses by using digital photographs and between these experts and the nursing registries in the electronic clinical record in the identification and degree of PL. This was an observational study, including 225 photographic records (184 patients, 97 with pressure lesion and 128 registries without lesion) randomly selected from the total of photographs registered in the PENFUP clinical trial (without lesion). Three expert evaluators assessed said photographs in masked manner. The notes from nursing of patients included related with the description of PL were evaluated. The Kappa index was calculated along with the composite agreement ratio for each evaluation. Good agreement was observed among expert evaluators of photographic records on the presence of PL and between good-moderate for the degree of PL (I-II). Likewise, upon evaluating the agreement between the nursing registries of PL and the photographic assessment of the three expert evaluators of the same areas, good agreement was observed to determine the presence of PL and moderate agreement for the degrees of PL. Photographic records are a tool that permits recognizing the types of wounds, as well as the visualization of the different layers of skin injured. The study highlights the importance of assessment and validation by experts, given that it permits identifying existing problems that can lead to the underestimation or overestimation of PL when conducted by a single caregiver.