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1.
Am J Hematol ; 98(4): 608-619, 2023 04.
Article in English | MEDLINE | ID: mdl-36606713

ABSTRACT

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 Conditioning
2.
Pediatr Diabetes ; 20232023.
Article in English | MEDLINE | ID: mdl-37929232

ABSTRACT

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 , Students
3.
Clin Transplant ; 36(9): e14768, 2022 09.
Article in English | MEDLINE | ID: mdl-35801650

ABSTRACT

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 , Survivors
4.
Pediatr Diabetes ; 23(6): 820-830, 2022 09.
Article in English | MEDLINE | ID: mdl-35661517

ABSTRACT

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 Questionnaires
5.
J Gen Intern Med ; 36(2): 487-499, 2021 02.
Article in English | MEDLINE | ID: mdl-33140272

ABSTRACT

BACKGROUND: Primary care is increasingly contributing to improving the quality of patient care. This has imposed significant demands on clinicians with rising needs and limited resources. Organizational culture and climate have been found to be crucial in improving workforce well-being and hence quality of care. The objectives of this study are to identify organizational culture and climate measures used in primary care from 2008 to 2019 and evaluate their psychometric properties. METHODS: Data sources include PubMed, PsycINFO, HAPI, CINAHL, and Mental Measurements Yearbook. Bibliographies of relevant articles were reviewed and a cited reference search in Scopus was performed. Eligibility criteria include primary health care professionals, primary care settings, and use of measures representing the general concept of organizational culture and climate. Consensus-Based Standards for the selection of health Measurement Instruments (COSMIN) guidelines were followed to evaluate individual studies for methodological quality, rate results of measurement properties, qualitatively pool studies by measure, and grade evidence. RESULTS: Of 1745 initial studies, 42 studies met key study inclusion criteria, with 27 measures available for review (16 for organizational culture, 11 for organizational climate). There was considerable variability in measures, both conceptually and in psychometric quality. Many reported limited or no psychometric information. DISCUSSION: Notable measures selected for frequent use and strength and applicability of measurement properties include the Culture Questionnaire adapted for health care settings, Practice Culture Assessment, and Medical Group Practice Culture Assessment for organizational culture. Notable climate measures include the Nurse Practitioner Primary Care Organizational Climate Questionnaire, Practice Climate Survey, and Task and Relational Climate Scale. This synthesis and appraisal of organizational culture and climate measures can help investigators make informed decisions in choosing a measure or deciding to develop a new one. In terms of limitations, ratings should be considered conservative due to adaptations of the COSMIN protocol for clinician populations. PROSPERO REGISTRATION NUMBER: CRD 42019133117.


Subject(s)
Organizational Culture , Primary Health Care , Health Personnel , Humans , Psychometrics , Surveys and Questionnaires
6.
Biol Blood Marrow Transplant ; 26(3): 593-599, 2020 03.
Article in English | MEDLINE | ID: mdl-31654786

ABSTRACT

There are more than 30 million potential unrelated hematopoietic progenitor cell (HPC) donors listed on international registries, but 30% to 50% are unavailable after matching a patient. In the United States racial/ethnic minorities opt out of donation at higher rates, and a previous study identified factors associated both with attrition and ethnic group membership. Attrition among minorities is also higher in the Anthony Nolan UK registry (35% in white British [WB] and 56% in nonwhite British [NWB]), but it is not clear what factors produce higher attrition in the United Kingdom and whether they are similar to those found in the United States. Three hundred fifty-seven UK potential donors who matched a patient completed a questionnaire. Key factors were compared by donation decision (continue or opt out) and by race/ethnicity (WB versus NWB). The pattern of UK results was compared with that of the previous US study for variables assessed in both studies. Across WB and NWB donors, higher attrition was associated with poorer physical/mental health, greater ambivalence, and more concerns about donation. Donors who opted out also reported less interaction with the registry, and 16% indicated that more interaction with the registry would have changed their decision. Those opting out of the registry and minorities were both more likely to report religious objections to donation and to mistrust the fairness of HPC allocation. The pattern of findings was similar in UK and US samples. Registries should maintain contact with potential donors after recruitment, aiming to educate members about the donation procedure and to address potential misconceptions associated with religious beliefs and HPC allocation.


Subject(s)
Ethnicity , Tissue Donors , Hematopoietic Stem Cells , Humans , Registries , United Kingdom , Unrelated Donors
7.
Biol Blood Marrow Transplant ; 26(12): 2365-2371, 2020 12.
Article in English | MEDLINE | ID: mdl-32829080

ABSTRACT

Multiple investigations have documented the health-related quality-of-life (HRQoL) and donation-related experiences of unrelated donors (URDs), but similar investigations of the related donor (RD) experience have been less common. The central goal of this study was to longitudinally examine and compare HRQoL of RD and URD hematopoietic stem cell (HSC) donors from predonation through 1 year postdonation. This prospective investigation included adult HSC donors ages 18 to 60 years who donated bone marrow or peripheral blood stem cells at one of 48 geographically diverse US transplant/donor centers and completed HRQoL interviews at predonation and 4 weeks and 1 year postdonation. At predonation, related donors were less ambivalent about donation (t = -3.30; P = .001), more satisfied with their decision to donate (t = 2.65; P = .009), and more likely to define themselves as donors (t = 2.94; P = .004) than were URDs. However, related donors were more concerned about the use of needles (odds ratio [OR] = 2.19; P = .012), about who would pay for the procedure (OR = 2.80; P = .011), and the possibility that they would feel responsible if the transplant failed (t = 2.31; P = .022). Shortly postdonation, related donors were more likely to report donation-related pain (t = 2.50; P = .013) and lightheadedness (OR = 3.63; P = .028). At 1 year postdonation, related donors were less likely to be fully recovered from donation (OR = 0.10; P = .010) and more likely to report a longer recovery period following donation (t = 2.57; P = .011), although this latter finding was primarily due to the percentage of related versus unrelated donors not fully recovered at 1 year postdonation (10% versus 1%). Taken together, these findings suggest that current related donor management practices may be sufficient in preparing related donors for the psychological aspects of donation but that there may be more to do in terms of calibrating the description of donation-related experiences and recovery time to the related donor group (i.e., descriptions of donation experiences based on unrelated donation may not provide best estimates of experience for this group).


Subject(s)
Peripheral Blood Stem Cells , Unrelated Donors , Adolescent , Adult , Hematopoietic Stem Cells , Humans , Living Donors , Middle Aged , Prospective Studies , Quality of Life , Young Adult
8.
Biol Blood Marrow Transplant ; 26(6): 1210-1217, 2020 06.
Article in English | MEDLINE | ID: mdl-32088366

ABSTRACT

Peripheral blood stem cells (PBSCs) have been increasingly used for allogeneic hematopoietic cell transplantation instead of bone marrow stem cells. Current National Marrow Donor Program policy recommends 5 days of daily filgrastim, followed by either 1 or 2 days of apheresis for unrelated donors, depending on collection center choice. To date, there are no published studies comparing the differences in donor experience between 1 day and 2 days of apheresis. We examined 22,348 adult unrelated donor collections in 184 centers between 2006 and 2016. Of these 22,348 donors, 20,004 (89.5%) had collection on 1 day, and the other 2344 (9.5%) had collection over 2 days. Information on why donors underwent apheresis in 1 day or 2 days was not available. Donors who underwent apheresis in 1 day were more likely to be male (67% versus 46%; P < .001), younger (age <30 years, 48% versus 36%; P < .001), and have a higher body weight (83.0 kg versus 75.9 kg; P< .001) and body mass index (BMI; >30, 30% versus 22%; P < .001). Successful collection of the requested CD34+ cell count was achieved on the first day in 82% of 1-day collections and in 16% of 2-day collections. Despite not administering filgrastim the evening after the first day of collection in patients who underwent 2 days of apheresis, the median concentration of CD34+ cells/L in the product was higher on the second day of apheresis compared with the first day (23.8 × 106 CD34+/L on day 1 versus 28.7 × 106 CD34+/L on day 2; P< .001). Donors who underwent collection in 1 day were less likely to experience citrate toxicity (36% versus 52%; P< .001), hospitalization (1% versus 6%; P< .001), and other side effects related to apheresis (Modified Toxicity Criteria incidence: 20% versus 26%; P < .001). Female sex, older age, collection via central lines, and higher BMI were factors associated with greater likelihood for the development of toxicity, whereas less toxicity was noted in those with higher CD34+ counts and more blood processed on the first day of collection. We conclude that although unrelated donors can be successfully collected in 1 day or 2 days, 1-day apheresis procedures were associated with less overall toxicity, and thus we recommend single-day collections, especially if the requested number of cells have been collected in 1 day.


Subject(s)
Peripheral Blood Stem Cells , Unrelated Donors , Adult , Aged , Antigens, CD34 , Blood Donors , Female , Granulocyte Colony-Stimulating Factor , Hematopoietic Stem Cell Mobilization , Hematopoietic Stem Cells , Humans , Male
9.
Prev Med ; 139: 106185, 2020 10.
Article in English | MEDLINE | ID: mdl-32593728

ABSTRACT

In response to growing evidence of associations between harmful masculinities and adverse health outcomes, researchers developed the Man Box Scale to provide a standardized measure to assess these inequitable gender attitudes. In 2019, we evaluated the psychometric properties of the 17-item Man Box Scale and derived a 5-item short form. Using previously collected data (in 2016) from men aged 18-30 years across the United States (n = 1328), the United Kingdom (n = 1225), and Mexico (n = 1120), we conducted exploratory (EFA) and confirmatory factor analyses (CFA), assessed convergent validity by examining associations of the standardized mean Man Box Scale score with violence perpetration, depression, and suicidal ideation, and assessed internal consistency reliability of the full scale. We used item response theory (IRT) to derive a 5-item short form, and conducted CFA and additional assessments for reliability and convergent validity. We identified a single underlying factor with 15 items across all three countries. CFA resulted in good model fit. We demonstrated significant associations of standardized mean Man Box Scale score with violence perpetration (OR range = 1.57-5.49), depression (OR range = 1.19-1.73), and suicidal ideation (OR range = 1.56-2.59). IRT resulted in a 5-item short form with good fit through CFA and convergent validity, and good internal consistency. The Man Box Scale assesses harmful masculinities and demonstrates strong validity and reliability across three diverse countries. This scale, either short or long forms, can be used in future prevention research, clinical assessment and decision-making, and intervention evaluations.


Subject(s)
Psychometrics , Factor Analysis, Statistical , Humans , Male , Mexico , Reproducibility of Results , Surveys and Questionnaires , United Kingdom
10.
Biol Blood Marrow Transplant ; 25(7): 1325-1330, 2019 07.
Article in English | MEDLINE | ID: mdl-30716454

ABSTRACT

Bone marrow (BM) is an essential source of hematopoietic stem cell grafts for many allogeneic hematopoietic cell transplant (HCT) recipients, including adult patients (for specific diseases and transplantation strategies) and the majority of pediatric recipient. However, since the advent of granulocyte colony-stimulating factor-mobilized peripheral blood stem cell (PBSC) grafts, there has been a significant decrease in the use of BM in HCT, thought to be due mainly to the increased logistical challenges in harvesting BM compared with PBSCs, as well as generally no significant survival advantage of BM over PBSCs. The decreased frequency of collection has the potential to impact the quality of BM harvests. In this study, we examined >15,000 BM donations collected at National Marrow Donor Program centers between 1994 and 2016 and found a significant decline in the quality of BM products, as defined by the concentration of total nucleated cells (TNCs). The mean TNC concentration in BM donations dropped from 21.8 × 106 cells/mL in the earliest era (1994 to 1996) to 18.7 × 106 cells/mL in the most recent era (2012 to 2016) (means ratio, .83; P < .001). This decline in BM quality was seen despite the selection of more donors perceived to be optimal (eg, younger and male). Multivariate regression analysis showed that higher-volume centers (performing >30 collections per era) had better-quality harvests with higher concentrations of TNCs collected. In conclusion, we have identified a significant decrease in the quality of BM collections over time, and lower-volume collection centers had poorer-quality harvests. In this analysis, we could not elucidate the direct cause for this finding, suggesting the need for further studies to investigate the key factors responsible and to explore the impact on transplant recipients.


Subject(s)
Bone Marrow Cells/cytology , Hematopoietic Stem Cell Transplantation , Adolescent , Adult , Cell Count , Female , Humans , Male , Middle Aged
11.
Biol Blood Marrow Transplant ; 25(5): 955-964, 2019 05.
Article in English | MEDLINE | ID: mdl-30605731

ABSTRACT

Although donation of bone marrow (BM) or peripheral blood stem cells (PBSCs) from children to family members undergoing allogeneic transplantation are well-established procedures, studies detailing levels of pain, symptoms, and long-term recovery are lacking. To address this lack, we prospectively enrolled 294 donors age <18 years at 25 pediatric transplantation centers in North America, assessing them predonation, peridonation, and at 1 month, 6 months, and 1 year postdonation. We noted that 71% of children reported pain and 59% reported other symptoms peridonation, with resolution to 14% and 12% at 1 month postdonation. Both older age (age 13 to 17 years versus younger) and female sex were associated with higher levels of pain peridonation, with the highest rates in older females (57% with grade 2-4 pain and 17% with grade 3-4 pain). Multivariate analyses showed a 4-fold increase in risk for older females compared with males age <13 years (P <.001). At 1 year, 11% of 13- to 17-year-old females reported grade 2-4 pain, compared with 3% of males age 13 to 17 years, 0% of females age <13 years, and 1% of males age <13 years (P = .01). Males and females age 13 to 17 years failed to return to predonation pain levels at 1 year 22% and 23% of the time, respectively, compared with 3% and 10% in males and females age <13 years (P = .002). Our data show that females age 13 to 17 years are at increased risk of grade 2-4 pain at 1 year and >20% of females and males age 13 to 17 years do not return to baseline pain levels by 1 year after BM donation. Studies aimed at decreasing symptoms and improving recovery in older children are warranted.


Subject(s)
Pain/etiology , Tissue Donors , Tissue and Organ Harvesting/adverse effects , Adolescent , Age Factors , Bone Marrow Transplantation , Female , Humans , Male , Sex Factors , Time Factors , Transplantation, Homologous
12.
J Gen Intern Med ; 34(9): 1925-1933, 2019 09.
Article in English | MEDLINE | ID: mdl-31289992

ABSTRACT

BACKGROUND: The 2014 Veterans Access, Choice and Accountability Act (i.e., "Choice") allows eligible Veterans to receive covered health care outside the Veterans Affairs (VA) Healthcare System. The initial implementation of Choice was challenging, and use was limited in the first year. OBJECTIVE: To assess satisfaction with Choice, and identify reasons for satisfaction and dissatisfaction during its early implementation. DESIGN AND PARTICIPANTS: Semi-structured telephone interviews from July to September 2015 with Choice-eligible Veterans from 25 VA facilities across the USA. MAIN MEASURES: Satisfaction was assessed with 5-point Likert scales and open-ended questions. We compared ratings of satisfaction with Choice and VA health care, and identified reasons for satisfaction/dissatisfaction with Choice in a thematic analysis of open-ended qualitative data. RESULTS: Of 195 participants, 35 had not attempted to use Choice; 43 attempted but had not received Choice care (i.e., attempted only); and 117 attempted and received Choice care. Among those who attempted only, a smaller percentage were somewhat/very satisfied with Choice than with VA health care (17.9% and 71.8%, p < 0.001); among participants who received Choice, similar percentages were somewhat/very satisfied with Choice and VA health care (66.6% and 71.1%, p = 0.45). When asked what contributed to Choice ratings, participants who attempted but did not receive Choice care reported poor access (50%), scheduling problems (20%), and care coordination issues (10%); participants who received Choice care reported improved access (27%), good quality of care (19%), and good distance to Choice provider (16%). Regardless of receipt of Choice care, most participants expressed interest in using Choice in the future (70-82%). CONCLUSIONS: Access and scheduling barriers contributed to dissatisfaction for Veterans unsuccessfully attempting to use Choice during its initial implementation, whereas improved access and good care contributed to satisfaction for those receiving Choice care. With Veterans' continued interest in using services outside VA facilities, subsequent policy changes should address Veterans' barriers to care.


Subject(s)
Health Services Accessibility/statistics & numerical data , Patient Satisfaction , Primary Health Care/statistics & numerical data , Veterans/psychology , Aged , Female , Humans , Male , Middle Aged , Qualitative Research , United States , United States Department of Veterans Affairs/legislation & jurisprudence , Veterans/statistics & numerical data , Veterans Health Services/organization & administration
13.
Pediatr Blood Cancer ; 66(12): e27961, 2019 12.
Article in English | MEDLINE | ID: mdl-31441217

ABSTRACT

BACKGROUND: Adolescents and young adult (AYA) women with cancer are at risk of heavy menstrual bleeding (HMB) due to thrombocytopenia, coagulopathy, and/or disruption of the hypothalamic-pituitary-gonadal axis. Currently, little is known about current practices to help prevent and treat HMB in AYA women with cancer. METHODS: We surveyed providers from 100 pediatric oncology centers. Face and content validity were assessed prior to distribution. Descriptive statistics, Chi-squared and Fisher exact tests were used for analysis. RESULTS: Ninety-four percent of respondents have recommended preventative menstrual suppression. More than half of respondents agreed that patients with the following types of cancers should receive preventative menstrual suppression: sarcomas, acute leukemias, lymphomas, and germ cell tumors. The most preferred form of menstrual suppression was GnRH agonists. Almost 95% of respondents felt that it is important to consider menstrual suppression and that a formal guideline about initiation of menstrual suppression would be helpful. Only 46% felt comfortable personally managing menstrual suppression. CONCLUSIONS: The vast majority of pediatric oncologists who responded to this national survey have used preventative menstrual suppression and feel that it is important to consider in many types of AYA cancers. Although pediatric oncologists are most often managing menstrual suppression, they do not feel comfortable doing so and desire guidelines to help with management. Future studies to assess which patients require menstrual suppression and which menstrual suppression is best tolerated and efficacious is needed.


Subject(s)
Menorrhagia/therapy , Neoplasms/complications , Oncologists/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Adolescent , Adult , Disease Management , Female , Follow-Up Studies , Humans , Male , Menorrhagia/etiology , Neoplasms/pathology , Prognosis , Surveys and Questionnaires , Young Adult
14.
Biol Blood Marrow Transplant ; 24(12): 2425-2432, 2018 12.
Article in English | MEDLINE | ID: mdl-30071322

ABSTRACT

The success of unrelated donor stem cell transplants depends on not only finding genetically matched donors, but also donor availability. On average 50% of potential donors in the National Marrow Donor Program database are unavailable for a variety of reasons, after initially matching a patient, with significant variations in availability among subgroups (eg, by race or age). Several studies have established univariate donor characteristics associated with availability. Individual consideration of each applicable characteristic is laborious. Extrapolating group averages to the individual-donor level tends to be highly inaccurate. In the current environment with enhanced donor data collection, we can make better estimates of individual donor availability. We propose a machine learning based approach to predict availability of every registered donor, and evaluate the predictive power on a test cohort of 44,544 requests to be .77 based on the area under the receiver-operating characteristic curve. We propose that this predictor should be used during donor selection to reduce the time to transplant.


Subject(s)
Machine Learning/standards , Stem Cells/metabolism , Humans , Tissue Donors
15.
Biol Blood Marrow Transplant ; 24(10): 2110-2118, 2018 10.
Article in English | MEDLINE | ID: mdl-29574124

ABSTRACT

Patients with blood-related diseases often cannot identify a matched related donor and must seek donors in unrelated donor registries. These registries face the challenge of ensuring that potential donors are available when contacted. Donor attrition is especially problematic when there is only a single perfectly matched potential donor. One way to improve donor availability might be to present perfectly matched donors (high-priority donors [HPDs]) with more precise information about their match status. This project evaluated the impact of providing such information to HPDs at the National Marrow Donor Program (NMDP)/Be The Match. Objectives were to determine the acceptability of the new messaging to both HPDs and the donor contact representatives (DCRs) who delivered the message, consistency of message delivery, and whether the new messaging was associated with improved donor availability. Mixed methods were used to collect telephone interview data from HPDs, matched samples of non-HPDs, and DCRs. Donor availability data came from NMDP records. Key findings were as follows: (1) the HPD message was acceptable to potential donors and did not seem to produce undue pressure, (2) the message was acceptable to DCRs who became more comfortable and consistent in delivering the message over time, but (3) the new messaging did not significantly increase availability. Despite the lack of evidence for increased availability, there may be ethical benefits and little harm to providing well-matched donors with more information about their degree of matching. Research should examine stronger match status messages and delivery of new messaging to additional highly-matched donor groups.


Subject(s)
Hematopoietic Stem Cell Transplantation , Histocompatibility Testing , Registries , Unrelated Donors , Adult , Allografts , Female , Humans , Male , Middle Aged
16.
Biol Blood Marrow Transplant ; 24(1): 175-184, 2018 01.
Article in English | MEDLINE | ID: mdl-28958894

ABSTRACT

Little is known about the experiences of individuals donating peripheral blood stem cells (PBSCs) or marrow for a second time. To study this, unrelated donors making a second donation through the National Marrow Donor Program between 2004 and 2013 were evaluated. Experiences of second-time donors giving marrow (n = 118: first donation was PBSC in 76 and marrow in 42) were compared with those making only 1 marrow donation (n = 5829). Experiences of second-time donors giving PBSCs (n = 602) (first donation was PBSCs in 362; marrow in 240) were compared to first-time PBSC donors (n = 16,095). For donors giving a second PBSC or marrow donation there were no significant differences in maximum skeletal pain, maximum symptoms measured by an established modified toxicity criteria, and recovery time compared with those who donated only once. Notably, the yield of marrow nucleated cells and PBSC CD34+ cells with second donations was less. As previously noted with single first-time donations, female (PBSCs and marrow) and obese donors (PBSCs) had higher skeletal pain and/or toxicity with a second donation. PBSC donors who experienced high levels of pain or toxicity with the first donation also experienced high levels of these symptoms with their second donation and slower recovery times. In conclusion, for most donors second donation experiences were similar to first donation experiences, but CD34+ yields were less. Knowledge of the donor's first experience and stem cell yields may help centers decide whether second donations are appropriate and institute measures to improve donor experiences.


Subject(s)
Antigens, CD34/blood , Bone Marrow , Peripheral Blood Stem Cells , Unrelated Donors , Adolescent , Adult , Body Weight , Humans , Middle Aged , Pain , Reoperation , Sex Factors , Transplantation, Homologous , Young Adult
17.
J Gen Intern Med ; 33(3): 305-331, 2018 03.
Article in English | MEDLINE | ID: mdl-29313226

ABSTRACT

BACKGROUND: Patient satisfaction is an important dimension of health care quality. The Veterans Health Administration (VA) is committed to providing high-quality care to an increasingly diverse patient population. OBJECTIVE: To assess Veteran satisfaction with VA health care by race/ethnicity and gender. DESIGN AND PARTICIPANTS: We conducted semi-structured telephone interviews with gender-specific stratified samples of black, white, and Hispanic Veterans from 25 predominantly minority-serving VA Medical Centers from June 2013 to January 2015. MAIN MEASURES: Satisfaction with health care was assessed in 16 domains using five-point Likert scales. We compared the proportions of Veterans who were very satisfied, somewhat satisfied, and less than satisfied (i.e., neither satisfied nor dissatisfied, somewhat dissatisfied, or very dissatisfied) in each domain, and used random-effects multinomial regression to estimate racial/ethnic differences by gender and gender differences by race/ethnicity. KEY RESULTS: Interviews were completed for 1222 of the 1929 Veterans known to be eligible for the interview (63.3%), including 421 white, 389 black, and 396 Hispanic Veterans, 616 of whom were female. Veterans were less likely to be somewhat satisfied or less than satisfied versus very satisfied with care in each of the 16 domains. The highest satisfaction ratings were reported for costs, outpatient facilities, and pharmacy (74-76% very satisfied); the lowest ratings were reported for access, pain management, and mental health care (21-24% less than satisfied). None of the joint tests of racial/ethnic or gender differences in satisfaction (simultaneously comparing all three satisfaction levels) was statistically significant (p > 0.05). Pairwise comparisons of specific levels of satisfaction revealed racial/ethnic differences by gender in three domains and gender differences by race/ethnicity in five domains, with no consistent directionality across demographic subgroups. CONCLUSIONS: Our multisite interviews of a diverse sample of Veterans at primarily minority-serving sites showed generally high levels of health care satisfaction across 16 domains, with few quantitative differences by race/ethnicity or gender.


Subject(s)
Delivery of Health Care/ethnology , Delivery of Health Care/standards , Hospitals, Veterans/standards , Patient Satisfaction/ethnology , United States Department of Veterans Affairs/standards , Veterans , Aged , Ethnicity/psychology , Female , Humans , Male , Middle Aged , Quality of Health Care/standards , Racial Groups/ethnology , Racial Groups/psychology , Sex Factors , United States/ethnology , Veterans/psychology
18.
J Surg Res ; 228: 127-134, 2018 08.
Article in English | MEDLINE | ID: mdl-29907201

ABSTRACT

BACKGROUND: Women surgeons continue to face unique challenges to professional advancement. Higher attrition rates and lower confidence among female surgical residents suggest that experiences during residency differ by gender. Few studies have investigated gender-specific experiences during training. This study identifies gender-based differences in the experiences of general surgery residents that could affect professional development. MATERIALS AND METHODS: Male and female general surgery residents at the University of Pittsburgh Medical Center participated in a semi-structured interview study exploring the significance of gender in training. Recurring themes were identified from transcribed interviews using inductive methods. Two individuals independently coded interviews. Themes were compared for male and female residents. Certain themes arose with greater frequency in reference to one gender over the other. RESULTS: Twenty-four male and eighteen female residents participated (87.5%) in the study. Fewer female residents self-identified as a "surgeon" (11.1% versus 37.5%, P < 0.001). Residents felt that patients and physicians more frequently disregarded female residents' professional role (P < 0.001). Female residents also more often mentioned perceiving aggressive behaviors from attendings and support staff (9% versus 1% and 10% versus 3%, respectively). Relative to men, women more often mentioned lack of mentorship (0% versus 8%), discomfort (4% versus 8%), feeling pressured to participate in unprofessional behaviors (2% versus 5%), and having difficulty completing tasks (5% versus 10%, P < 0.001). CONCLUSIONS: Women experience gender-based challenges during surgical training. Further investigation is needed to determine how these experiences affect professional development.


Subject(s)
General Surgery/education , Physicians, Women/psychology , Professional Role , Qualitative Research , Surgeons/psychology , Female , Humans , Internship and Residency , Interprofessional Relations , Male , Physician-Patient Relations , Sex Factors , Sexism , Surgeons/education , Surveys and Questionnaires
19.
J Med Internet Res ; 20(8): e10056, 2018 08 03.
Article in English | MEDLINE | ID: mdl-30076127

ABSTRACT

BACKGROUND: Pain is the most common physical symptom requiring medical care, yet the current methods for assessing pain are sorely inadequate. Pain assessment tools can be either too simplistic or take too long to complete to be useful for point-of-care diagnosis and treatment. OBJECTIVE: The aim was to develop and test Painimation, a novel tool that uses graphic visualizations and animations instead of words or numeric scales to assess pain quality, intensity, and course. This study examines the utility of abstract animations as a measure of pain. METHODS: Painimation was evaluated in a chronic pain medicine clinic. Eligible patients were receiving treatment for pain and reported pain more days than not for at least 3 months. Using a tablet computer, participating patients completed the Painimation instrument, the McGill Pain Questionnaire (MPQ), and the PainDETECT questionnaire for neuropathic symptoms. RESULTS: Participants (N=170) completed Painimation and indicated it was useful for describing their pain (mean 4.1, SE 0.1 out of 5 on a usefulness scale), and 130 of 162 participants (80.2%) agreed or strongly agreed that they would use Painimation to communicate with their providers. Animations selected corresponded with pain adjectives endorsed on the MPQ. Further, selection of the electrifying animation was associated with self-reported neuropathic pain (r=.16, P=.03), similar to the association between neuropathic pain and PainDETECT (r=.17, P=.03). Painimation was associated with PainDETECT (r=.35, P<.001). CONCLUSIONS: Using animations may be a faster and more patient-centered method for assessing pain and is not limited by age, literacy level, or language; however, more data are needed to assess the validity of this approach. To establish the validity of using abstract animations ("painimations") for communicating and assessing pain, apps and other digital tools using painimations will need to be tested longitudinally across a larger pain population and also within specific, more homogenous pain conditions.


Subject(s)
Medical Informatics/methods , Pain Measurement/methods , Pain/diagnosis , Communication , Cross-Sectional Studies , Feasibility Studies , Female , Humans , Male , Middle Aged , Pain/pathology , Surveys and Questionnaires
20.
Biol Blood Marrow Transplant ; 23(1): 165-171, 2017 01.
Article in English | MEDLINE | ID: mdl-27751935

ABSTRACT

The increasing number of older adults with blood-related disorders and the introduction of reduced-intensity conditioning regimens has led to increases in hematopoietic stem cell (HSC) transplantation among older adults and a corresponding increase in the age of siblings who donate HSCs to these patients. Data regarding the donation-related experiences of older donors are lacking. The Related Donor Safety Study aimed to examine/compare health-related quality of life (HRQoL) of older versus younger HSC donors. Sixty peripheral blood stem cell (PBSC) donors ages 18 to 60 years and 104 PBSC donors age >60 years completed validated questionnaires before donation and 4 weeks and 1 year after donation. Before donation, older donors had poorer general physical health (t = -3.27; P = .001) but better mental health (t = 2.11; P < .05). There were no age differences in multiple other donation-related factors. At 4 weeks after donation, there were no group differences in general physical/mental health, but older donors were less likely to report donation-related pain (t = -2.26; P < .05) and concerns (t = -3.38; P = .001). At both 4 weeks and 1 year after donation, there were no significant differences in the percentage of each age group feeling physically back to normal or in the number of days it took donors to feel completely well. There was no evidence that increasing age within the older donor group was associated with poorer donation-related HRQoL. Taken together, these data support the current practice of HSC donation by sibling donors above age 60, providing no evidence of worsening HRQoL up to 1 year after donation in individuals up to age 76.


Subject(s)
Hematopoietic Stem Cells , Quality of Life , Tissue Donors , Adolescent , Adult , Age Factors , Aged , Humans , Mental Health , Middle Aged , Peripheral Blood Stem Cells , Siblings , Young Adult
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