ABSTRACT
Young adults from underserved racial/ethnic groups are critically needed as unrelated hematopoietic stem cell (HSC) donors, yet they are more likely than other groups to opt out of donation after having matched a patient. Understanding which factors are most strongly associated with opting out among young underserved racial/ ethnic registered donors compared with their White counterparts will provide the basis for specific interventions to improve donor retention. We sought to determine the key, modifiable psychosocial, registry-related, and donation-related characteristics that are uniquely associated with opting out across 5 key racial/ethnic groups of young HSC donor registry members who had been contacted as a potential match for a patient. This study examines data from a large cross-sectional survey of young (age 18 to 30) registry members shortly after they preliminarily matched a patient (CT-stage) and continued toward or opted out of donation (CT-C and CT-NI), stratified by racial/ethnic group and sex. We assessed psychosocial, registry-related, and donation-related characteristics for all participants. We used chi-squared and F tests to assess differences between racial/ethnic groups. A separate logistic regression analysis for each racial/ethnic group was conducted to quantify adjusted associations between each variable and opting out. Then, we compared these associations across the racial/ethnic groups by evaluating the interaction effect between each variable and racial/ethnic group, with the same outcome (CT-C versus CT-NI) in question. Nine hundred thirty-five participants were surveyed, including 284 White, 165 Hispanic, 191 Black, 192 Asian/Pacific Islander, and 103 Multiracial/multiethnic participants. There were significant differences across racial/ethnic groups in values/goals, religious objections to donation, HSC-related medical mistrust, and parental involvement in donation decisions. Adjusted logistic regression subgroup analyses indicated that ambivalence was strongly associated with opting out across all racial/ethnic groups. Greater focus on intrinsic life goals (e.g., raising a family, becoming a community leader, influencing social values) was associated with opting out in the Multiracial/multiethnic, Hispanic, and Asian/Pacific Islander groups. Healthcare mistrust and insufficient registry contact was a significant factor for Hispanic participants. Protective factors against opting out included remembering joining the registry (Black participants), and parental support for donation decision (Asian/Pacific Islander participants). The performance of each logistic regression model was strong, with area-under-the curve ≥.88, CT-stage outcome classification accuracy ≥89%, and good fit between expected and observed opt-out probabilities. In the analysis across different racial/ethnic groups, the only significant interaction was race/ethnicity by whether more contact with the registry would have changed the decision at CT-stage; this variable was significant only for the Hispanic group. In the within-group analysis for Hispanic participants, the "more registry contact" variable was strongly associated with opting out (odds ratio 5.8, P = .03). Consistent with a growing body of HSC donor research, ambivalence was a key factor associated with opting-out for all racial/ethnic groups. Other key variables were differentially associated with opting-out depending on racial/ethnic group. Our study highlights key variables that registries should focus on as they develop targeted and tailored strategies to enhance commitment and reduce attrition of potential donors.
Subject(s)
Hematopoietic Stem Cell Transplantation , Registries , Adolescent , Adult , Female , Humans , Male , Young Adult , Cross-Sectional Studies , Ethnicity/statistics & numerical data , Ethnicity/psychology , Hematopoietic Stem Cell Transplantation/psychology , Hematopoietic Stem Cells , Racial Groups/statistics & numerical data , Racial Groups/psychology , United States , Unrelated Donors , White , Hispanic or Latino , Black or African American , Asian American Native Hawaiian and Pacific IslanderABSTRACT
Objective: The Diabetes Device Confidence Scale (DDCS) is a new scale designed to evaluate school nurse confidence with diabetes devices. We hypothesized that DDCS score would be associated with related constructs of school nurse diabetes knowledge, experience, and training. Research Design and Methods: In a cross-sectional study, we co-administered the DDCS and Diabetes Knowledge Test 2 (DKT2) questionnaires to school nurses in Pennsylvania. We summarized DDCS scores (range 1-5) descriptively. We evaluated the relationship between DKT2 percent score and DDCS mean score with the Spearman correlation coefficient. Simple linear regression examined school nurse characteristics as predictors of DDCS score. Results: A total of 271 completed surveys were received. Mean DDCS score was 3.16±0.94, indicating moderate confidence with devices overall. School nurses frequently reported low confidence in items representing specific skills, including suspending insulin delivery (40%), giving a manual bolus (42%), knowing when to calibrate a continuous glucose monitor (48%), changing an insulin pump site (54%), and setting a temporary basal rate (58%). Mean DKT2 score was 89.5±0.1%, which was weakly but not significantly correlated with DDCS score (r=0.12, p=0.06). Formal device training (p<0.001), assisting ≥5 students with diabetes devices in the past 5 years (p<0.01), and a student caseload between 1000-1500 students (p<0.001) were associated with higher mean DDCS score. Conclusions: DDCS score is related to prior training and experience, providing evidence for the scale's convergent validity. The DDCS may be a useful tool for assessing school nurse readiness to use devices and identify areas to enhance knowledge and practical skills.
Subject(s)
Diabetes Mellitus , Humans , Cross-Sectional Studies , Diabetes Mellitus/therapy , Insulin , Surveys and Questionnaires , StudentsABSTRACT
Objective: To determine test characteristics of categorical risk stratification for early onset sepsis (EOS) using maternal criteria for suspected intraamniotic infection (IAI) and/or newborn exam and compare them to the EOS calculator. Study Design: Retrospective 1:3 case-control study of late preterm/term infants with bacterial culture growth obtained <72 hours of life. For categorical approach, infants of mothers with suspected IAI or equivocal/ill appearing were presumed high-risk for EOS and blood culture obtained. For calculator, estimated probability of EOS and care recommendations were recorded from online calculator. Test characteristics were compared with McNemar's test; recommendation for blood culture was considered a "positive" test. Result: 52 cases and 172 controls were included. Compared to the calculator, the categorical approach had higher sensitivity 90%(95%CI:79-96%) vs 67% (95%CI:54-79%) but lower specificity 85%(95%CI:78-89%) vs. 92%(95%CI:87-96%). 10% of cases were not identified by either. Conclusion: A categorical approach using suspected IAI/newborn exam offers good EOS discrimination and is comparable to the calculator.
ABSTRACT
OBJECTIVE: Costs associated with low back pain (LBP) continue to rise. Despite numerous clinical practice guidelines, the evaluation and treatments for LBP are variable and largely depend on the individual provider. As yet, little attention has been given to the first choice of provider. Early research indicates that the choice of first provider and the timing of interventions for LBP appear to influence utilization. We sought to examine the association between the first provider seen and health care utilization. METHODS: Using 2015-2018 data from a large insurer, this retrospective analysis focused on patients (29,806) seeking care for a new episode of LBP. The study identified the first provider chosen and examined the following year of medical utilization. Cox proportional hazards models were calculated using inverse probability weighting on propensity scores to evaluate the time to event and the relationship to the first choice of provider. RESULTS: The primary outcome was the timing and use of health care resources. Total health care use was lowest in those who first sought care with chiropractic care or physical therapy. Highest health care use was seen in those patients who chose the emergency department. CONCLUSION: Overall, there appears to be an association between the first choice of provider and future health care use. Chiropractic care and physical therapy provide nonpharmacologic and nonsurgical, guideline-based interventions. The use of physical therapists and chiropractors as entry points into the health system appears related to a decrease in immediate and long-term use of health resources. This study expands the existing body of literature and provides a compelling case for the influence of the first provider on an acute episode of LBP. IMPACT: The first provider seen for an acute episode of LBP influences immediate treatment decisions, the trajectory of a specific patient episode, and future health care choices in the management of LBP.
Subject(s)
Low Back Pain , Humans , Low Back Pain/rehabilitation , Retrospective Studies , Patient Acceptance of Health Care , Costs and Cost Analysis , Health ResourcesABSTRACT
INTRODUCTION: Valid measures of pain are helpful to adjust treatment plans in real time after total joint replacement (TJR). We enhanced the existing Defense and Veterans Pain Rating Scale (DVPRS) with items related to pain at rest and movement, in specific reference to operative and nonoperative joints, creating the TJR-DVPRS. This manuscript is presented to validate the modified survey instrument. The aims of this psychometric study were to evaluate (1) the latent structure of the TJR-DVPRS, (2) the relationships among the pain dimensions represented on the TJR-DVPRS and the reference-standard Short-Form McGill Pain Questionnaire (version 2, SF-MPQ-2), and (3) the responsiveness of these two measures before and after TJR. MATERIALS AND METHODS: This report involves a secondary analysis of pain surveys from 135 veterans undergoing TJR at one center who participated in a randomized trial. The study was approved by the institutional review boards from participating institutions. The TJR-DVPRS and SF-MPQ-2 were completed preoperatively, during postoperative day 1, and 6 weeks post-surgery. Standard psychometric evaluations included correlations, principal component analysis, and internal consistency of survey items and subscales, using preoperative baseline data as a frame of reference. Responsiveness analysis included assessing both effect size and thresholds of clinically important change for survey subscales using data from all three time points. RESULTS: Two reliable subscales were identified for the TJR-DVPRS, one including items about pain intensity and interference related to the operative joint (Cronbach's α = .809) and the other including two pain items on the nonoperative joint. Combining the subscales indicated a two-factor solution: The first valid factor entailed the four subscales of the SF-MPQ-2 and the TJR-DVPRS operative joint subscales, indicating that these subscales validly represent the same pain dimension. The second valid factor entailed the TJR-DVPRS subscale addressing the nonoperative joint. Responsiveness analysis following accepted psychometric methods demonstrated significant decreases in pain from the preoperative period to 6 weeks postoperatively for all subscales. The TJR-DVPRS and SF-MPQ-2 subscales were similarly responsive, except for the SF-MPQ-2 neuropathic and TJR-DVPRS nonoperative joint subscales, which were minimally responsive during the preoperative to 6-week period. CONCLUSIONS: The TJR-DVPRS is valid for use among veterans undergoing TJR and poses significantly less respondent burden than does the SF-MPQ-2. The brevity and ease of use of the TJR-DVPRS make it a practical tool for use during surgical recovery to monitor pain intensity at rest and with movement in the operative joint, and to assess pain interference with activity, sleep, and mood. The TJR-DVPRS is at least as responsive as the SF-MPQ-2, but the SF-MPQ-2 neuropathic and TJR-DVPRS nonoperative joint subscales were minimally responsive. Limitations of this study include the small sample size, under-representation of women (which would be expected in the veteran population), and using only veterans. Future validations studies should include civilians and active military TJR patients.
Subject(s)
Military Personnel , Veterans , Humans , Female , Pain Measurement/methods , Reproducibility of Results , Pain , Arthralgia , Surveys and Questionnaires , PsychometricsABSTRACT
PURPOSE: There is no consensus regarding how best to measure postoperative quality of recovery after anesthesia/surgery (e.g., using 24-hour survey instruments) in veterans or active military. Our goals were to (1) describe health-related quality-of-life (HRQoL) and recovery across time in veterans, (2) examine the commonality between the quality of recovery (QoR-15) and short-form (SF) surveys (including the SF-8, 24-hour version), and (3) examine the responsiveness of these surveys. MATERIALS AND METHODS: This study was approved by the Institutional Review Boards from the University of Pittsburgh, the VA Pittsburgh, and the Human Research Protection Office of the Department of Defense. Secondary analyses of data were executed based on a randomized trial dataset of knee/hip arthroplasty patients, the study having recruited 135 total veterans. QoR-15 and HRQoL SF surveys were completed and self-reported before surgery (pre-op), on postoperative day 2 (PO-D2), and 6 weeks postoperatively. Descriptive statistics were used to examine scores across time. Common content was examined using Pearson's r. Responsiveness was examined using distribution-based methods. RESULTS: Average veteran age was 67 year, 89% were male, 88% white, and average body mass index was 33 kgâm-2. QoR-15 scores declined from pre-op to PO-D2 but were higher than pre-op at 6 weeks. SF physical component summary (PCS) scores were low both pre-op and PO-D2, but were elevated over baseline at 6 weeks. SF mental component summary (MCS) scores declined from baseline to PO-D2 but were higher than pre-op at 6 weeks. Associations of the QoR-15 total score and PCS/MCS were medium/large and statistically significant at P ≤ .01. Both instruments were responsive to changes. CONCLUSION: QoR-15 and SF-8 have high content commonality and performed similarly in veterans across time. SF-8 has added benefits of (1) brevity, (2) assessment of physical and mental health components, and (3) being normed to the general population. The SF-8, if used without the QoR-15 in tandem in future study of anesthesia-related outcomes, would need to be supplemented by separate questions addressing postoperative nausea/vomiting (a frequent outcome after anesthesia that is relevant to same-day and next-day mobilization after elective joint replacement surgery).
Subject(s)
Anesthesia, Conduction , Arthroplasty, Replacement, Knee , Humans , Male , Female , Surveys and Questionnaires , Quality of Life/psychology , Knee JointABSTRACT
Allogeneic hematopoietic cell transplantation (allo-HCT) is a potentially curative treatment for acute myeloid leukemia (AML) and acute lymphoblastic leukemia (ALL). While many factors influence the outcomes of allo-HCT, the independent impact of donor-recipient ABO mismatching remains unclear. Using the Center for International Blood and Marrow Transplant Research (CIBMTR) database, we identified patients aged ≥18 years with AML or ALL who underwent allo-HCT between 2008 and 2018. Our objectives were to analyze the outcomes of allo-HCT based on the donor-recipient ABO status (match, minor mismatch, major mismatch, bidirectional mismatch). Among 4946 eligible patients, 2741 patients (55.4%) were ABO matched, 1030 patients (20.8%) had a minor ABO mismatch, 899 patients (18.1%) had a major ABO mismatch, and 276 patients (5.6%) had a bidirectional ABO mismatch. In multivariable analyses, compared to ABO matched allo-HCT, the presence of a major ABO mismatch was associated with worse overall survival (HR 1.16, 95% CI 1.05-1.29; p = 0.005), inferior platelet engraftment (HR 0.83, 95% CI 0.77-0.90; p < 0.001), and higher primary graft failure (HR 1.60, 95% CI 1.12-2.30, p = 0.01). Relapse, acute graft versus host disease (GVHD) grades III-IV and chronic GVHD were not significantly associated with ABO status. While donor age was not significantly associated with outcomes, older recipient age was associated with worse survival and non-relapse mortality. Our study demonstrates that donor-recipient ABO status is independently associated with survival and other post-transplantation outcomes in acute leukemia. This underscores the importance of considering the ABO status in donor selection algorithms and its impact in acute leukemia.
Subject(s)
Graft vs Host Disease , Hematopoietic Stem Cell Transplantation , Leukemia, Myeloid, Acute , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Humans , Adolescent , Adult , Leukemia, Myeloid, Acute/therapy , Bone Marrow Transplantation , Bone Marrow , Acute Disease , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Graft vs Host Disease/etiology , Retrospective Studies , Transplantation ConditioningABSTRACT
BACKGROUND: Sexual and gender minority (SGM; ie, lesbian, gay, bisexual, transgender, and otherwise queer) young adults experience disparities in depression and other internalizing psychopathology. Although social media use is widespread and SGM people have more social media accounts and are more socially active on them than non-SGM individuals, few studies have examined the impact of social media on depression in this group. OBJECTIVE: The PRIDE iM study will be the first longitudinal, mixed methods research conducted to determine the impact of social media interactions and behaviors as pathways to depressive symptoms among SGM young adults living in the United States. METHODS: PRIDE iM uses a bookends variation of the longitudinal sequential mixed methods design. Participants will be recruited nationally from social media. First, between July 2019 and February 2020, we conducted a qualitative phase (T1) comprising web-based individual interviews (N=58) to inform the building and content of the quantitative survey. Second, from February 2022 to September 2022, we will conduct a series of web-based surveys (N=1000 at baseline) with 4 data points (T2-T5), each one collected every 6 to 8 weeks. Third, from October 2022 to December 2022, we will conduct a second qualitative phase (T6) of web-based interviews using outcome trajectories found in the longitudinal survey analyses to purposively sample survey participants and conduct web-based interviews to contextualize and explain survey findings. Qualitative data from T1 and T6 will be analyzed using a reflexive thematic analysis approach. As we sought to capture change over time in the association between the main predictors (ie, social media interactions and behaviors) and depressive symptoms, we propose analyzing T2 to T5 data using latent growth models with a structural equation modeling framework. Data integration at the method, interpretation, and reporting levels will be achieved through building and connecting and the use of a staged approach and joint displays, respectively. At all stages, we will assess the fit of data integration as recommended by the principles of best practice for mixed methods research in psychology. RESULTS: Data collection will be completed by December 2022. Qualitative data analyses will be completed by March 2023, and quantitative analyses of the primary outcome of interest will be completed by June 2023. CONCLUSIONS: PRIDE iM will confirm, reject, or uncover the presence of potential relationships between social media interactions and behaviors and depressive symptoms among SGM people. This study represents fundamental groundwork to develop social media-based interventions that target modifiable interactions and behaviors that are most likely to influence mental health outcomes, thus seizing the opportunity to merge the popularity of this medium among SGM people with evidence-based approaches. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43627.
ABSTRACT
Young adults enrolled in hematopoietic stem cell (HSC) donation registries, including the Be The Match registry in the United States, often opt out of the registry when a potential recipient is identified. This results in a limited supply from the most desirable allogeneic source of HSCs used in transplantation to treat serious health conditions. The differences in demographic, psychosocial, registry-related, and donation-related characteristics between those who continue to donation and those who opt out may elucidate the modifiable risk factors for attrition, but these characteristics have not been extensively studied in young donors up to age 30 years. Our goal was to study demographic, psychosocial, registry-related, and donation-related characteristics in a group of young HSC donor registry members who had recently been contacted about a potential recipient, to determine the key characteristics that differ between those who continued toward donation and those who opted out and to examine the extent of these differences. We conducted a cross-sectional survey in a random sample of young (age 18 to 30 years) current and former registry members, stratified by race/ethnicity and sex. Demographic, psychosocial (eg, life goals, HSC allocation mistrust), registry-related (eg context and motive for joining the registry), and donation-related (eg, ambivalence, religious objections to donation, knowledge about donation) characteristics were assessed. Chi-square and 2-sample t tests were used to examine differences between those who continued (CT-C group) and those who opted out (CT-NI group). Hierarchical logistic regression was used to estimate adjusted covariate effects on the odds of opting out. A total of 935 participants were surveyed. Donation-related knowledge was higher in the CT-C group than in the CT-NI group. HSC allocation mistrust, religious objections, and concerns about donation were higher in the CT-NI group. After adjusting for covariates in a logistic regression model, we found that having more intrinsic life goals, having more ambivalence, and talking with registry staff only once/twice were significantly associated with opting out of the registry. Ambivalence had the strongest association with opting out. In contrast, remembering joining the registry, believing that parents would support donation, and having medical concerns were significantly associated with continuing toward donation. This effect of medical concerns on donation was discovered only after adjusting for the related but distinct ambivalence variable, with the remaining effect of medical concerns relating to engagement with the donation process and information-seeking. The model had strong discriminative ability (area under the receiver operating characteristic curve = .92) and classification accuracy (86.6%). Our data indicate that among young adult members of a national HSC donor registry, ambivalence and limited contact with registry staff were more strongly associated with opting out of donation. Medical concerns were associated with continuing toward donation. Further studies are needed to confirm a causal link between medical concerns and continuing to donation among young donors. Our study suggests that these concerns might not be directly related to attrition, whereas other factors (eg, ambivalence, low donation-related knowledge) are associated with attrition and thus should be targeted for attrition reduction strategies.
Subject(s)
Hematopoietic Stem Cells , Unrelated Donors , Young Adult , Humans , Adult , Adolescent , Cross-Sectional Studies , Motivation , EthnicityABSTRACT
The contribution of related donors to the globally rising number of allogeneic haematopoietic stem cell transplantations (HSCT) remains increasingly important, particularly because of the growing use of haploidentical HSCT. Compared with the strict recommendations on the suitability for unrelated donors, criteria for related donors allow for more discretion and vary between centres. In 2015, the donor outcome committee of the Worldwide Network for Blood and Marrow Transplantation (WBMT) proposed consensus recommendations of suitability criteria for paediatric and adult related donors. This Review provides updates and additions to these recommendations from a panel of experts with global representation, including the WBMT, the European Society for Blood and Marrow Transplantation donor outcome committee, the Center for International Blood and Marrow Transplant Research donor health and safety committee, the US National Marrow Donor Program, and the World Marrow Donor Association, after review of the current literature and guidelines. Sections on the suitability of related donors who would not qualify as unrelated donors have been updated. Sections on communicable diseases, clonal haematopoiesis of indeterminate potential, paediatric aspects including psychological issues, and reporting on serious adverse events have been added. The intention of this Review is to support decision making, with the goal of minimising the medical risk to the donor and protecting the recipient from transmissible diseases.
Subject(s)
Hematopoietic Stem Cell Transplantation , Adult , Child , Consensus , Humans , Transplantation, Homologous , Unrelated DonorsABSTRACT
BACKGROUND: Survival into the second decade after cardiothoracic transplantation (CTX) is no longer uncommon. Few data exist on any health-related quality of life (HRQOL) impairments survivors face, or whether they may even experience positive psychological outcomes indicative of "thriving" (e.g., personal growth). We provide such data in a long-term survivor cohort. METHODS: Among 304 patients prospectively studied across the first 2 years post-CTX, we re-interviewed patients ≥15 years post-CTX. We (a) examined levels of HRQOL and positive psychological outcomes (posttraumatic growth related to CTX, purpose in life, life satisfaction) at follow-up, (b) evaluated change since transplant with mixed-effects models, and (c) identified psychosocial and clinical correlates of study outcomes with multivariable regression. RESULTS: Of 77 survivors, 64 (83%) were assessed (35 heart, 29 lung recipients; 15-19 years post-CTX). Physical HRQOL was poorer than the general population norm and earlier post-transplant levels (P's < .001). Mental HRQOL exceeded the norm (P < .001), with little temporal change (P = .070). Mean positive psychological outcome scores exceeded scales' midpoints at follow-up. Life satisfaction, assessed longitudinally, declined over time (P < .001) but remained similar to the norm at follow-up. Recent hospitalization and dyspnea increased patients' likelihood of poor physical HRQOL at follow-up (P's ≤ .022). Lower sense of mastery and poorer caregiver support lessened patients' likelihood of positive psychological outcomes (P's ≤ .049). Medical comorbidities and type of CTX were not associated with study outcomes at follow-up. CONCLUSIONS: Despite physical HRQOL impairment, long-term CTX survivors otherwise showed favorable outcomes. Clinical attention to correlates of HRQOL and positive psychological outcomes may help maximize survivors' well-being.
Subject(s)
Lung Transplantation , Quality of Life , Cohort Studies , Humans , Lung Transplantation/psychology , Quality of Life/psychology , SurvivorsABSTRACT
BACKGROUND: School nurses need to be equipped to help students with diabetes devices. No existing tools assess school nurse self-efficacy in using devices. OBJECTIVE: To develop and evaluate the psychometric properties of a novel scale to measure school nurse confidence with diabetes devices. RESEARCH DESIGN AND METHODS: We generated a list of items with community partners and examined logical validity. We then revised and distributed the item set to school nurses in Pennsylvania to examine aspects of structural validity, convergent validity, and internal consistency reliability. We used item response theory to refine the scale. RESULTS: Facilitated discussion with collaborators generated an initial list of 50 potential items. Based upon the item-content validity index, we revised/eliminated 13 items. School nurses (n = 310) in Pennsylvania completed an updated 38-item scale; the majority had experience with insulin pumps or continuous glucose monitors. Exploratory factor analysis identified a one-factor solution, suggesting a unidimensional scale. We eliminated 13 additional items based upon significant inter-item correlation or skewed response patterns. Item response theory did not identify additional candidate items for removal. Despite a high degree of redundancy (Cronbach's alpha > 0.90), we retained all remaining items to maximize the future utility of the scale. CONCLUSION: The 25-item, unidimensional Diabetes Device Confidence Scale is a new tool to measure school nurse confidence with diabetes devices. This scale has future clinical, programmatic, and research applications. Combined with knowledge assessments, this scale can serve to evaluate school nurse device use readiness, assess training gaps, and tailor interventions.
Subject(s)
Diabetes Mellitus , Factor Analysis, Statistical , Humans , Psychometrics , Reproducibility of Results , Surveys and QuestionnairesABSTRACT
There is a lack of evidence about how health-related quality of life (HRQoL), including psychosocial factors, might affect donation-related experiences and clinical markers in the context of hematopoietic stem cell donation. The broader literature suggests that psychological factors, including anxiety and depression, are associated with higher levels of inflammatory burden leading to poorer postprocedural outcomes including longer hospital stays and increased pain perception. In this study, we aimed to evaluate whether predonation HRQoL markers predict toxicity profile and stem cell yield after peripheral blood stem cell (PBSC) donation in healthy donors. The study population comprised adult granulocyte colony-stimulating factor mobilized PBSC-related donors (RD) (n = 157) and unrelated donors (URD) (n = 179) enrolled in the related donor safety study (RDSafe) and Blood and Marrow Transplant Clinical Trials Network (BMT CTN) 0201 clinical trials. Pre-donation HRQoL was assessed using the Short-Form-12 (SF-12) in RDSafe and SF-8 questionnaire in BMT CTN 0201 (higher score is better). The aims of this study were to (a) determine the impact of pre-donation HRQoL on peri-collection pain and acute toxicities experienced and (b) to investigate the pre-procedural HRQoL indicators on stem cells yield. URDs were younger than RDs (median age 35 versus 63). A higher proportion of RDs were female (50% versus 40%) and obese (41% versus 35%). A higher proportion of RD PBSC donations required 2 days or more of apheresis (44% versus 21%). More RD collections were lower volume procedures (<18L, 16% versus 28%), and required a central line (28% versus 11%). RDs were more likely to report pre-donation grade 1-2 pain (27% versus 8%) and other toxicities (16% versus 6%). Among RDs, a lower pre-donation physical component summary (PCS) score was associated with significantly more grade 2-4 pain at 1 month (P = .004) and at 1-year after donation (P = .0099) in univariable analyses. In multivariable analysis, pre-donation PCS remained significantly associated with grade 2-4 pain 1 month after donation (P = .0098). More specifically, RDs with predonation PCS scores in the highest quartile were less likely to report pain compared with donors with PCS scores in the lowest quartile (odds ratio 0.1; 95% confidence interval 0.01-0.83; P = .005). There was also a trend toward higher grade 2-4 pain at 1-year post-donation among RDs with lower predonation PCS score (P = .018). Among URDs, neither PCS nor mental component summary (MCS) scores were associated with pain or toxicities at any time point after donation based on the univariable analysis. Because of low rates of postdonation grade 2-4 pain and toxicities, multivariable analysis was not performed in the URD setting. Moreover, there was no correlation between preapheresis HRQoL score (PCS or MCS) and PBSC collection yield in either the RD or URD setting. Our study demonstrates that pre-donation HRQoL scores are significantly associated with the toxicity profile after PBSC donation in the RD setting, with adult RDs with lower predonation physical HRQoL experiencing higher levels of pain at 1 month and persisting up to 12 months after a PBSC collection procedure. There were no such associations found in URD. Our findings can help clinicians identify donors at higher risk of pain with donation, and lead to personalized information and interventions for specific donors. Lack of correlation between predonation HRQoL and stem cell yield may be due to a small sample size and warrants further evaluation.
Subject(s)
Blood Component Removal , Peripheral Blood Stem Cells , Adult , Female , Humans , Male , Bone Marrow , Diterpenes , Pain , Patient Reported Outcome Measures , Quality of Life , Unrelated DonorsABSTRACT
Background: Investigations of health-related quality of life (HRQoL) in AKI have been limited in number, size, and domains assessed. We surveyed AKI survivors to describe the range of HRQoL AKI-related experiences and examined potential differences in AKI effects by sex and age at AKI episode. Methods: AKI survivors among American Association of Kidney Patients completed an anonymous online survey in September 2020. We assessed: (1) sociodemographic characteristics; (2) effects of AKI-physical, emotional, social; and (3) perceptions about interactions with health care providers using quantitative and qualitative items. Results: Respondents were 124 adult AKI survivors. Eighty-four percent reported that the AKI episode was very/extremely impactful on physical/emotional health. Fifty-seven percent reported being very/extremely concerned about AKI effects on work, and 67% were concerned about AKI effects on family. Only 52% of respondents rated medical team communication as very/extremely good. Individuals aged 22-65 years at AKI episode were more likely than younger/older counterparts to rate the AKI episode as highly impactful overall (90% versus 63% younger and 75% older individuals; P=0.04), more impactful on family (78% versus 50% and 46%; P=0.008), and more impactful on work (74% versus 38% and 10%; P<0.001). Limitations of this work include convenience sampling, retrospective data collection, and unknown AKI severity. Conclusions: These findings are a critical step forward in understanding the range of AKI experiences/consequences. Future research should incorporate more comprehensive HRQoL measures, and health care professionals should consider providing more information in their patient communication about AKI and follow-up.
Subject(s)
Acute Kidney Injury/psychology , Patient Reported Outcome Measures , Quality of Life , Survivors/psychology , Acute Kidney Injury/epidemiology , Adult , Age Factors , Aged , Health Impact Assessment , Humans , Middle Aged , Quality of Life/psychology , Retrospective Studies , Sex Factors , United States/epidemiology , Young AdultABSTRACT
CONTEXT: Guidelines recommend palliative care for patients with chronic kidney disease (CKD), who experience a high pain and symptom burden, and receive intensive treatments that often do not align with their values. A lack of scalable specialty palliative care services has prompted calls for attention to primary palliative care, delivered in primary care and nephrology settings. OBJECTIVES: The objectives of this study were to 1) describe expectations for care to meet the palliative care needs of people living with CKD, and limitations to meeting those expectations in the current model, and 2) identify potential interventions to meet patients' palliative care needs. METHODS: We conducted semi-structured interviews with clinicians from primary care, nephrology, and palliative care to assess 1) reasonable expectations for meeting palliative needs, 2) barriers to integrating primary palliative care, and 3) potential intervention points. RESULTS: Clinicians discussed their expectations for high-quality communication (e.g., discussing disease understanding, assessing goals of care) and better integration of palliative care services. Clinicians expressed barriers to delivering that care, including poor inter-clinician communication. To address barriers, clinicians outlined potential intervention points, such as building collaborative models of care, and structural triggers to identify patients who may be appropriate for palliative care. CONCLUSION: Interventions to address gaps in palliative care delivery for people living with CKD should incorporate systematic identification of patients with palliative care needs and structural mechanisms to meeting those needs via specialty and primary palliative care.
Subject(s)
Hospice and Palliative Care Nursing , Nephrology , Renal Insufficiency, Chronic , Delivery of Health Care , Humans , Palliative Care , Renal Insufficiency, Chronic/therapyABSTRACT
Attrition of young adult registry members is a significant issue impacting hematopoietic stem cell (HSC) donation registries, including the Be The Match registry in the US. The resulting limited supply of allogeneic HSCs, used to treat serious health conditions, has a stronger impact on racial/ethnic minority groups in the US. Compared with young white adults, young adults identifying with these minority groups are more likely to drop out of the donor registry when called to donate. However, the underlying psychosocial factors that differ between white and nonwhite registrants have not been fully investigated. The central goal of this study was to examine demographic, registry-related, and donation-related characteristics in a young, newly registered group of potential donors and to determine whether these characteristics differed by, or were distributed differently among, racial/ethnic groups. We conducted a cross-sectional survey in a random sample of young (age 18 to 30 years) newly registered members, stratified by racial/ethnic group and sex. Demographic, registry-related (eg, context and motive for joining the registry), and donation-related (eg, ambivalence, religious objections to donation, knowledge about donation) characteristics were assessed. The chi-square test and analysis of variance were used to examine differences among racial/ethnic groups. Discriminant function analysis was used to assess whether patterns of the 3 classes of characteristics were associated with membership in particular racial/ethnic groups. A total of 524 participants were surveyed. Joining online was most common among white individuals, whereas joining at college was most common among black and Hispanic individuals. Ambivalence toward donation was higher among Asian/Pacific Islanders compared with white or multiracial/multiethnic individuals. Discriminant function analysis revealed 4 psychosocial/attitudinal functions predicting membership in certain racial/ethnic groups. The function accounting for the most variance in responses included mistrust of HSC allocation, religious objections to donation, low parental support, and low knowledge level. This function discriminated significantly between the white and nonwhite groups. Another function also identified ambivalence as a discriminating factor, which was most strongly associated with Asian/Pacific Islanders. Among young adult members of an HSC donor registry, such factors as ambivalence, family concerns about donation, mistrust of HSC allocation, religious objections, and less knowledge about donation were more strongly associated with membership in the nonwhite groups compared with the white group. These factors are known to be associated with a higher risk of opting out after having been preliminarily matched with a patient. The finding that these characteristics are associated with racial/ethnic minority group membership provides targets for recruitment strategies aimed at improving retention of young registry members.
Subject(s)
Ethnicity , Minority Groups , Adolescent , Adult , Attitude , Cross-Sectional Studies , Hematopoietic Stem Cells , Humans , Young AdultABSTRACT
BACKGROUND: Racial/ethnic minorities face known disparities in likelihood of kidney transplantation. These disparities may be exacerbated when coupled with ongoing substance use, a factor also reducing likelihood of transplantation. We examined whether race/ethnicity in combination with ongoing substance use predicted incidence of transplantation. METHODS: Patients were enrolled between March 2010 and October 2012 at the time of transplant evaluation. Substance use data were retrieved from transplant evaluations. Following descriptive analyses, the primary multivariable analyses evaluated whether, relative to the referent group (White patients with no substance use), racial/ethnic minority patients using any substances at the time of evaluation were less likely to receive transplants by the end of study follow-up (August 2020). RESULTS: Among 1152 patients, 69% were non-Hispanic White, 23% non-Hispanic Black, and 8% Other racial/ethnic minorities. White, Black, and Other patients differed in percentages of current tobacco smoking (15%, 26%, and 18%, respectively; P = 0.002) and illicit substance use (3%, 8%, and 9%; P < 0.001) but not heavy alcohol consumption (2%, 4%, and 1%; P = 0.346). Black and Other minority patients using substances were each less likely to receive transplants than the referent group (hazard ratios ≤0.45, P ≤ 0.021). Neither White patients using substances nor racial/ethnic minority nonusers differed from the referent group in transplant rates. Additional analyses indicated that these effects reflected differences in waitlisting rates; once waitlisted, study groups did not differ in transplant rates. CONCLUSIONS: The combination of minority race/ethnicity and substance use may lead to unique disparities in likelihood of transplantation. To facilitate equity, strategies should be considered to remove any barriers to referral for and receipt of substance use care in racial/ethnic minorities.
Subject(s)
Kidney Transplantation , Substance-Related Disorders , Ethnic and Racial Minorities , Ethnicity , Healthcare Disparities , Humans , Minority Groups , United States/epidemiologyABSTRACT
Gender inequitable attitudes are associated with violence perpetration and poor sexual health. There is limited diversity in U.S. samples used to validate gender attitudes measurements. This study assessed a 13-item gender equitable attitudes scale's validity among a sample of predominantly Black adolescent boys (n = 866; mean age = 15.5, range = 13-19 years) and examined associations with sexual health behaviors. Exploratory and confirmatory factor analyses tested construct validity. Logistic mixed-effects models were used to explore associations between gender equitable attitudes, adolescent relationship abuse, pornography use, and condom use behaviors; linear mixed-effects models explored associations between gender equitable attitudes and condom negotiation self-efficacy. By pooling data from two other gender transformative programs, Sisterhood 2.0 (n = 246, 13-19-year-old females (mean age = 15.2), 73.6% Black/African American) and Coaching Boys into Men Middle School (n = 958, 11-14-year-old males-6th grade: 10.4%, 7th grade: 36.5%, 8th grade: 53.1-56.6% white), measurement invariance was assessed across Black (n = 400) and white (n = 298) race and male (n = 429) and female (n = 246) gender. A three-factor 11-item scale showed construct validity among a sample of Black adolescent boys, weak factorial invariance across Black and white race, and configural invariance across male and female gender. Gender equitable attitudes were associated with less adolescent relationship abuse, higher condom negotiation self-efficacy, and less pornography use. These findings demonstrate some variability in measurements of gender equitable attitudes by race and gender. Targeting harmful gender norms may help prevent adolescent relationship abuse and improve sexual health behaviors.
ABSTRACT
BACKGROUND: Professional burnout represents a significant threat to the American healthcare system. Organizational and individual factors may increase healthcare providers' susceptibility or resistance to burnout. We hypothesized that during the COVID-19 pandemic, 1) higher levels of perceived organizational support (POS) are associated with lower risk for burnout and anxiety, and 2) anxiety mediates the association between POS and burnout. METHODS: In this longitudinal prospective study, we surveyed healthcare providers employed full-time at a large, multihospital healthcare system monthly over 6 months (April to November 2020). Participants were randomized using a 1:1 allocation stratified by provider type, gender, and academic hospital status to receive one of two versions of the survey instrument formulated with different ordering of the measures to minimize response bias due to context effects. The exposure of interest was POS measured using the validated 8-item Survey of POS (SPOS) scale. Primary outcomes of interest were anxiety and risk for burnout as measured by the validated 10-item Burnout scale from the Professional Quality (Pro-QOL) instrument and 4-item Emotional Distress-Anxiety short form of the Patient Reported Outcome Measurement Information System (PROMIS) scale, respectively. Linear mixed models evaluated the associations between POS and both burnout and anxiety. A mediation analysis evaluated whether anxiety mediated the POS-burnout association. RESULTS: Of the 538 participants recruited, 402 (75%) were included in the primary analysis. 55% of participants were physicians, 73% 25-44 years of age, 73% female, 83% White, and 44% had ≥1 dependent. Higher POS was significantly associated with a lower risk for burnout (-0.23; 95% CI -0.26, -0.21; p<0.001) and lower degree of anxiety (-0.07; 95% CI -0.09, -0.06; p = 0.010). Anxiety mediated the associated between POS and burnout (direct effect -0.17; 95% CI -0.21, -0.13; p<0.001; total effect -0.23; 95% CI -0.28, -0.19; p<0.001). CONCLUSION: During a health crisis, increasing the organizational support perceived by healthcare employees may reduce the risk for burnout through a reduction in anxiety. Improving the relationship between healthcare organizations and the individuals they employ may reduce detrimental effects of psychological distress among healthcare providers and ultimately improve patient care.