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1.
J Infect Dis ; 2024 May 23.
Article in English | MEDLINE | ID: mdl-38779889

ABSTRACT

BACKGROUND: The use of fidaxomicin is recommended as first line therapy for all patients with Clostridioides difficile infection (CDI). However, real-world studies have shown conflicting evidence of superiority. METHODS: We conducted a retrospective single center study of patients diagnosed with CDI between 2011-2021. A primary composite outcome of clinical failure, 30-day relapse or CDI-related death was used. A multivariable cause specific Cox proportional hazards model was used to evaluate fidaxomicin compared to vancomycin in preventing the composite outcome. A separate model was fit on a subset of patients with C. difficile ribotypes adjusting for ribotype. RESULTS: There were 598 patients included, of whom 84 received fidaxomicin. The primary outcome occurred in 8 (9.5%) in the fidaxomicin group compared to 111 (21.6%) in the vancomycin group. The adjusted multivariable model showed fidaxomicin was associated with 63% reduction in the risk of the composite outcome compared to vancomycin (HR = 0.37, 95% CI 0.17-0.80). In the 337 patients with ribotype data after adjusting for ribotype 027, the results showing superiority of fidaxomicin were maintained (HR = 0.19, 95% CI 0.05-0.77). CONCLUSION: In the treatment of CDI, we showed that real-world use of fidaxomicin is associated with lower risk of a composite endpoint of treatment failure.

2.
J Oncol Pharm Pract ; 27(7): 1569-1577, 2021 Oct.
Article in English | MEDLINE | ID: mdl-33019872

ABSTRACT

BACKGROUND: Although oral anticancer medications (OAM) provide opportunity for treatment at home, challenges include prescription filling, monitoring side effects, safe handling, and adherence. We assessed understanding of and adherence to OAM in vulnerable patients. METHODS: This 2018 pilot study defined vulnerable patients based on Chinese language, older age (≥65 years), and subsidized insurance. All participants had a cancer diagnosis and were taking an OAM filled through the hospital's specialty pharmacy. Participants reported on OAM taking (days per week, times per day, special instructions) and handling (handling, storage, disposal). The specialty pharmacist classified patient-reported responses about OAM taking and handling as adequate or inadequate. OAM regimens were classified by complexity. RESULTS: Of 61 eligible patients, 55 participated. Mean age was 68 years (standard deviation [SD] = 12) and 53% were female. Patient subgroups were: 27% Chinese, 64% ≥65 years, and 9% subsidized insurance. Forty-nine percent were on frontline therapy and median time on OAM was 1 year (Quartile 1 = 0.4, Quartile 3 = 1.7). Adequacy of OAM taking (30%) and handling (15%) were low; 15% had adequacy in both. Adequacy of OAM taking and handling did not vary by patient subgroup or regimen complexity. Mean patient-reported adherence was high (5.4, SD = 1, possible range 1-6) and did not vary by adequacy of OAM taking or handling. CONCLUSIONS: Understanding of OAM taking and handling in this group of vulnerable patients was low and did not align with patient-reported adherence. Future interventions should ensure that patients understand how to safely take and handle OAM, thereby optimizing their therapeutic potential.


Subject(s)
Pharmaceutical Services , Pharmacies , Aged , Cross-Sectional Studies , Female , Humans , Medication Adherence , Pharmacists , Pilot Projects
3.
J Oncol Pharm Pract ; 27(6): 1409-1421, 2021 Sep.
Article in English | MEDLINE | ID: mdl-32996363

ABSTRACT

BACKGROUND: Oral anticancer medications (OAM) make administration more convenient for patients, but shifts the responsibility of care from clinical providers to the patients themselves. Following an institutional pilot study showing inadequate understanding and adherence among vulnerable patients taking OAM, a longitudinal intervention was developed using an oncology specialty pharmacist and medication navigators to enhance OAM understanding and adherence. METHODS: Patients initiating OAM were approached for four formalized teaching and check-in sessions, supplemented with medication information sheets and individualized calendars. At each session, participants were assessed on their OAM understanding and adherence using teach-back and validated measures. A study evaluation elicited feedback from participants on the usefulness of the intervention. RESULTS: Of 80 eligible patients, 58 (72.5%) received formal OAM teaching from the specialty pharmacist. Of those, 54 (93.1%) enrolled in the study with 39 (72%) completing the intervention for final analysis. At study completion, all participants adequately understood OAM taking, but 41.0% had inadequate understanding of OAM handling. Throughout the study, participants reported issues that were addressed by the intervention team (28.2% to 31.6%) as well as those requiring additional assistance from the treatment team (26.3% to 38.5%), Most participants found the intervention to be very beneficial (initial evaluation, 86.5%; final evaluation, 76.9%). CONCLUSIONS: This pilot intervention addressed gaps identified by our institutional assessment through formalized OAM teaching and follow-up. Improved understanding of taking and handling OAM through this subsequent study illustrated the enhanced effect of a multidisciplinary and multicomponent intervention to better educate and support patients on OAM.


Subject(s)
Antineoplastic Agents , Administration, Oral , Humans , Medical Oncology , Medication Adherence , Pharmacists , Pilot Projects
4.
Br J Haematol ; 190(2): 222-235, 2020 07.
Article in English | MEDLINE | ID: mdl-32090325

ABSTRACT

While Hodgkin lymphoma (HL) is highly curable in younger patients, older patients have higher relapse and death rates, which may reflect age-related factors, distinct disease biology and/or treatment decisions. We described the association between patient, disease and geographic factors and first-line treatment in older patients (≥65 years) with incident HL using Surveillance, Epidemiology, and End Results (SEER)-Medicare data from 1999 to 2014 (n = 2825). First-line treatment initiated at ≤4 months after diagnosis was categorised as: full chemotherapy regimen (n = 699, 24·7%); partial chemotherapy regimen (n = 1016, 36·0%); single chemotherapy agent or radiotherapy (n = 382, 13·5%); and no treatment (n = 728, 25·8%). Among the fully treated, ABVD [doxorubicin (Adriamycin), bleomycin, vinblastine, dacarbazine]/AVD was most common (n = 635, 90·8%). Adjusted multinomial logistic regression identified factors associated with treatment. Older age, Medicaid dual eligibility, not married, frailty, cardiac comorbidity, prior cancer, earlier diagnosis date, histology, advanced disease Stage, B symptoms and South region were independently associated with increased odds of not receiving full chemotherapy regimens. In conclusion, we found variability in first-line HL treatment for older patients. Treatment differences by Medicaid and region may indicate disparities. Even after adjusting for frailty and cardiac comorbidity, age was associated with treatment, suggesting factors such as end-of-life care or shared decision-making may influence treatment in older patients.


Subject(s)
Hodgkin Disease/drug therapy , SEER Program/standards , Aged , Cohort Studies , Female , Hodgkin Disease/pathology , Humans , Male , Medicare , Retrospective Studies , United States
5.
Circulation ; 137(21): 2218-2230, 2018 05 22.
Article in English | MEDLINE | ID: mdl-29581125

ABSTRACT

BACKGROUND: Familial hypercholesterolemia (FH) and other extreme elevations in low-density lipoprotein cholesterol significantly increase the risk of atherosclerotic cardiovascular disease; however, recent data suggest that prescription rates for statins remain low in these patients. National rates of screening, awareness, and treatment with statins among individuals with FH or severe dyslipidemia are unknown. METHODS: Data from the 1999 to 2014 National Health and Nutrition Examination Survey were used to estimate prevalence rates of self-reported screening, awareness, and statin therapy among US adults (n=42 471 weighted to represent 212 million US adults) with FH (defined using the Dutch Lipid Clinic criteria) and with severe dyslipidemia (defined as low-density lipoprotein cholesterol levels ≥190 mg/dL). Logistic regression was used to identify sociodemographic and clinical correlates of hypercholesterolemia awareness and statin therapy. RESULTS: The estimated US prevalence of definite/probable FH was 0.47% (standard error, 0.03%) and of severe dyslipidemia was 6.6% (standard error, 0.2%). The frequency of cholesterol screening and awareness was high (>80%) among adults with definite/probable FH or severe dyslipidemia; however, statin use was uniformly low (52.3% [standard error, 8.2%] of adults with definite/probable FH and 37.6% [standard error, 1.2%] of adults with severe dyslipidemia). Only 30.3% of patients with definite/probable FH on statins were taking a high-intensity statin. The prevalence of statin use in adults with severe dyslipidemia increased over time (from 29.4% to 47.7%) but not faster than trends in the general population (from 5.7% to 17.6%). Older age, health insurance status, having a usual source of care, diabetes mellitus, hypertension, and having a personal history of early atherosclerotic cardiovascular disease were associated with higher statin use. CONCLUSIONS: Despite the high prevalence of cholesterol screening and awareness, only ≈50% of adults with FH are on statin therapy, with even fewer prescribed a high-intensity statin; young and uninsured patients are at the highest risk for lack of screening and for undertreatment. This study highlights an imperative to improve the frequency of cholesterol screening and statin prescription rates to better identify and treat this high-risk population. Additional studies are needed to better understand how to close these gaps in screening and treatment.


Subject(s)
Dyslipidemias/drug therapy , Hydroxymethylglutaryl-CoA Reductase Inhibitors/therapeutic use , Hyperlipoproteinemia Type II/drug therapy , Adult , Cholesterol, LDL/blood , Dyslipidemias/epidemiology , Dyslipidemias/pathology , Female , Health Knowledge, Attitudes, Practice , Humans , Hyperlipoproteinemia Type II/epidemiology , Logistic Models , Male , Middle Aged , Nutrition Surveys , Prevalence , Self Report , Severity of Illness Index , Young Adult
6.
Pediatr Crit Care Med ; 19(5): 412-420, 2018 05.
Article in English | MEDLINE | ID: mdl-29406371

ABSTRACT

OBJECTIVE: To describe program design, costs, and savings implications of a critical care-based care coordination model for medically complex children with chronic respiratory failure. DESIGN: All program activities and resultant clinical outcomes were tracked over 4 years using an adapted version of the Care Coordination Measurement Tool. Patient characteristics, program activity, and acute care resource utilization were prospectively documented in the adapted version of the Care Coordination Measurement Tool and retrospectively cross-validated with hospital billing data. Impact on total costs of care was then estimated based on program outcomes and nationally representative administrative data. SETTING: Tertiary children's hospital. SUBJECTS: Critical Care, Anesthesia, Perioperative Extension and Home Ventilation Program enrollees. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The program provided care for 346 patients and families over the study period. Median age at enrollment was 6 years with more than half deriving secondary respiratory failure from a primary neuromuscular disease. There were 11,960 encounters over the study period, including 1,202 home visits, 673 clinic visits, and 4,970 telephone or telemedicine encounters. Half (n = 5,853) of all encounters involved a physician and 45% included at least one care coordination activity. Overall, we estimated that program interventions were responsible for averting 556 emergency department visits and 107 hospitalizations. Conservative monetization of these alone accounted for annual savings of $1.2-2 million or $407/pt/mo net of program costs. CONCLUSIONS: Innovative models, such as extension of critical care services, for high-risk, high-cost patients can result in immediate cost savings. Evaluation of financial implications of comprehensive care for high-risk patients is necessary to complement clinical and patient-centered outcomes for alternative care models. When year-to-year cost variability is high and cost persistence is low, these savings can be estimated from documentation within care coordination management tools. Means of financial sustainability, scalability, and equal access of such care models need to be established.


Subject(s)
Cost Savings/statistics & numerical data , Hospital Costs/statistics & numerical data , Hospitals, Pediatric/economics , Pediatrics/economics , Respiratory Insufficiency/economics , Specialization/economics , Adolescent , Child , Child, Preschool , Chronic Disease , Critical Care/economics , Critical Care/organization & administration , Female , Hospitals, Pediatric/organization & administration , Humans , Infant , Male , Massachusetts , Patient-Centered Care/economics , Patient-Centered Care/organization & administration , Pediatrics/organization & administration , Respiratory Insufficiency/therapy , Retrospective Studies
7.
Circulation ; 133(11): 1067-72, 2016 Mar 15.
Article in English | MEDLINE | ID: mdl-26976914

ABSTRACT

BACKGROUND: The prevalence of familial hypercholesterolemia (FH) is commonly reported as 1 in 500. European reports suggest a higher prevalence; the US FH prevalence is unknown. METHODS AND RESULTS: The 1999 to 2012 National Health and Nutrition Examination Survey (NHANES) participants ≥20 years of age (n=36 949) were analyzed to estimate the prevalence of FH with available Dutch Lipid Clinic criteria, including low-density lipoprotein cholesterol and personal and family history of premature atherosclerotic cardiovascular disease. Prevalence and confidence intervals of probable/definite FH were calculated for the overall population and by age, sex, obesity status (body mass index ≥30 kg/m(2)), and race/ethnicity. Results were extrapolated to the 210 million US adults ≥20 years of age. The estimated overall US prevalence of probable/definite FH was 0.40% (95% confidence interval, 0.32-0.48) or 1 in 250 (95% confidence interval, 1 in 311 to 209), suggesting that 834 500 US adults have FH. Prevalence varied by age, being least common in 20 to 29 year olds (0.06%, 1 in 1557) and most common in 60 to 69 year olds (0.85%, 1 in 118). FH prevalence was similar in men and women (0.40%, 1 in 250) but varied by race/ethnicity (whites: 0.40%, 1 in 249; blacks: 0.47%, 1 in 211; Mexican Americans: 0.24%, 1 in 414; other races: 0.29%, 1 in 343). More obese participants qualified as probable/definite FH (0.58%, 1 in 172) than nonobese (0.31%, 1 in 325). CONCLUSIONS: FH, defined with Dutch Lipid Clinic criteria available in NHANES, affects 1 in 250 US adults. Variations in prevalence by age and obesity status suggest that clinical criteria may not be sufficient to estimate FH prevalence.


Subject(s)
Hyperlipoproteinemia Type II/epidemiology , Adolescent , Adult , Age Factors , Aged , Aged, 80 and over , Body Mass Index , Child , Comorbidity , Ethnicity/statistics & numerical data , Female , Humans , Hyperlipoproteinemia Type II/blood , Lipids/blood , Male , Middle Aged , Nutrition Surveys , Obesity/epidemiology , Prevalence , Sex Factors , United States/epidemiology , Young Adult
8.
Cancer ; 123(16): 3159-3166, 2017 Aug 15.
Article in English | MEDLINE | ID: mdl-28387946

ABSTRACT

BACKGROUND: The experience of children undergoing hematopoietic stem cell transplantation (HSCT), including the ways in which different participants (ie, children, parents, and nurses) contribute to the overall picture of a child's experience, is poorly characterized. This study evaluated parent, child, and nurse perspectives on the experience of children during HSCT and factors contributing to interrater differences. METHODS: Participants were enrolled in a multicenter, prospective study evaluating child and parent health-related quality of life over the year after HSCT. Children (n = 165) and their parents and nurses completed the Behavioral, Affective, and Somatic Experiences Scale (BASES) at baseline (before/during conditioning), 7 days after the stem cell infusion (day+7), and 21 days after the stem cell infusion (day+21). The BASES domains included Somatic Distress, Mood Disturbance, Cooperation, and Getting Along. Higher scores indicated more distress/impairment. Repeated measures models by domain assessed differences by raters and changes over time and identified other factors associated with raters' scores. RESULTS: Completion rates were high (≥73% across times and raters). Multivariate models revealed significant time-rater interactions, which varied by domain. For example, parent-rated Somatic Distress scores increased from baseline to day+7 and remained elevated at day+21 (P < .001); children's scores were lower than parents' scores across time points. Nurses' baseline scores were lower than parents' baseline scores, although by day+21 they were similar. Older child age was associated with higher Somatic Distress and Mood Disturbance scores. Worse parent emotional functioning was associated with lower scores across raters and domains except for Cooperation. CONCLUSIONS: Multirater assessments are highly feasible during HSCT. Ratings differ by several factors; considering ratings in light of such factors may deepen our understanding of the child's experience. Cancer 2017;123:3159-66. © 2017 American Cancer Society.


Subject(s)
Hematopoietic Stem Cell Transplantation/psychology , Neoplasms/therapy , Nurses , Parents , Quality of Life/psychology , Stress, Psychological/psychology , Transplantation Conditioning/psychology , Adolescent , Child , Child, Preschool , Female , Humans , Linear Models , Male , Multivariate Analysis , Neoplasms/psychology , Prospective Studies
9.
J Pediatr ; 185: 99-105.e2, 2017 06.
Article in English | MEDLINE | ID: mdl-28209292

ABSTRACT

OBJECTIVES: To determine pediatricians' practices, attitudes, and barriers regarding screening for and treatment of pediatric dyslipidemias in 9- to 11-year-olds and 17- to 21-year-olds. STUDY DESIGN: American Academy of Pediatrics (AAP) 2013-2014 Periodic Survey of a national, randomly selected sample of 1627 practicing AAP physicians. Pediatricians' responses were described and modeled. RESULTS: Of 614 (38%) respondents who met eligibility criteria, less than half (46%) were moderately/very knowledgeable about the 2008 AAP cholesterol statement; fewer were well-informed about 2011 National Heart, Lung, and Blood Institute Guidelines or 2007 US Preventive Service Task Force review (both 26%). Despite published recommendations, universal screening was not routine: 68% reported they never/rarely/sometimes screened healthy 9- to 11-year-olds. In contrast, more providers usually/most/all of the time screened based on family cardiovascular history (61%) and obesity (82%). Screening 17- to 21-year-olds was more common in all categories (P?

Subject(s)
Dyslipidemias/diagnosis , Dyslipidemias/therapy , Mass Screening/statistics & numerical data , Pediatricians , Practice Patterns, Physicians'/statistics & numerical data , Adolescent , Adult , Attitude of Health Personnel , Child , Counseling/statistics & numerical data , Drug Prescriptions/statistics & numerical data , Female , Guideline Adherence , Humans , Hydroxymethylglutaryl-CoA Reductase Inhibitors/therapeutic use , Life Style , Lipids/blood , Male , Middle Aged , Practice Guidelines as Topic , Risk Factors , Surveys and Questionnaires , United States
10.
J Pediatr Psychol ; 42(7): 804-814, 2017 08 01.
Article in English | MEDLINE | ID: mdl-28369555

ABSTRACT

Objective: Explore interrelationships between domains of child health-related quality of life (HRQL) and parent emotional functioning using parent-proxy and child report in the context of hematopoietic stem cell transplant (HSCT). Methods: Data on 258 parent-child dyads were used from two longitudinal studies. Domains of HRQL included physical, emotional, and role functioning, and HSCT-related worry. We used structural equation modeling to model the outcome of parent emotional functioning using primary and alternative conceptual models. Results: Parent-proxy raters reported lower child HRQL than child raters. Structural equation models demonstrated relationships between child emotional functioning, child HSCT-related worry, and parent emotional functioning, with some differences by raters. Conclusions: Relationships between child HRQL and parent emotional functioning within the context of HSCT are complex. To optimize the child's health outcomes, providing psychosocial support for children and their families may be necessary, especially for those experiencing distress or facing treatment complications.


Subject(s)
Child Health , Emotions , Hematopoietic Stem Cell Transplantation/psychology , Parents/psychology , Quality of Life , Adolescent , Adult , Child , Child, Preschool , Cross-Sectional Studies , Female , Health Status Indicators , Humans , Male , Models, Statistical , Quality of Life/psychology , Stress, Psychological/etiology
11.
Biol Blood Marrow Transplant ; 22(1): 104-11, 2016 Jan.
Article in English | MEDLINE | ID: mdl-26348891

ABSTRACT

Pediatric hematopoietic stem cell transplantation (HSCT) offers cure for high-risk malignancies and other conditions, but carries a risk of complications. Parental outlook regarding their child's transplantation course and future health has been largely unexplored. This report presents the Parent Outlook Scale, describes its properties, and examines the outlook of parents embarking on their child's transplantation course and the associated variables. Parents of children scheduled to undergo HSCT (n = 363) at 8 US transplantation centers completed the Parent Outlook Scale, comprising 4 items assessing frequency of the parent's thoughts about the potential difficulty of the child's transplantation (Transplant Difficult subscale) and worsened health (Health Worse subscale). Item responses were rated on a 5-point Likert scale (ranging from "none" to "all of the time") and, along with scale/subscale scores, transformed to 100-point scales, with higher scores connoting greater thought frequency. Psychometrics were explored. Multivariable models identified personal and clinical characteristics associated with scale and subscale scores. The Parent Outlook Scale (α = 0.75) and subscales were found to have sound psychometric properties. Factor loading supported the single scale with 2 subscales representing distinct aspects of overall outlook. Mean scores (Parent Outlook, 52.5 ± 21.7; Transplant Difficult, 64.4 ± 25.6; Health Worse, 40.7 ± 25.7) revealed variability within and across scale/subscales. Significantly different mean subscale scores (P < .001) indicated more frequent Transplant Difficult thoughts than Health Worse thoughts. Clinical factors (solid tumor diagnosis and unrelated donor transplant) and a parent factor (worse emotional functioning) were associated with higher scale and subscale scores. Our findings show that the outlook of parents embarking on their child's HSCT course is varied and not solely a product of clinical factors readily apparent to clinicians. Referring and transplantation clinicians should create opportunities to explore with parents their perspectives and concerns before and during the course of HSCT.


Subject(s)
Hematopoietic Stem Cell Transplantation/psychology , Neoplasms/psychology , Parents/psychology , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Male , Middle Aged , Neoplasms/therapy , Prospective Studies , Psychometrics
12.
J Pediatr ; 175: 40-6, 2016 08.
Article in English | MEDLINE | ID: mdl-27289498

ABSTRACT

OBJECTIVE: To assess the family impact of managing severe, chronic respiratory failure (CRF) at home. Better understanding will inform parental counseling and serve as a point of reference for interventions. STUDY DESIGN: Families of children with CRF completed the Impact on Family Scale (IFS) and Consumer Assessment of Healthcare Providers and Systems. Using multivariable linear regression, we assessed the relationship between IFS and family, clinical, and utilization characteristics. RESULTS: A total of 118 parents (60%) completed the IFS; 114 parents (58%) completed all measures. The 15-item IFS mean total score was 40 (SD = 10) with a possible range of 15-60 (greater scores indicate more impact). Modeling identified a negative association with parent emotional functioning, parent-rated child health, and private insurance only (compared with both private/public), and other family characteristics (eg, parental education, marital status, and income) were not associated with IFS scores. CONCLUSION: Families of children with CRF are greatly impacted by their child's health. In contrast to other children with special health care needs, family characteristics were not associated with IFS scores, excluding insurance type. These results may reflect more uniform demands and stressors related to CRF. Future research should identify interventions to attenuate the impact of CRF.


Subject(s)
Caregivers/psychology , Health Impact Assessment , Home Nursing/psychology , Parent-Child Relations , Parents/psychology , Respiratory Insufficiency/psychology , Stress, Psychological/etiology , Adolescent , Adult , Child , Child, Preschool , Chronic Disease , Family Characteristics , Female , Humans , Infant , Linear Models , Male , Middle Aged , Respiratory Insufficiency/therapy , Stress, Psychological/diagnosis
13.
Cancer ; 121(22): 4025-34, 2015 Nov 15.
Article in English | MEDLINE | ID: mdl-26348120

ABSTRACT

BACKGROUND: Patient navigation may reduce cancer disparities associated with socioeconomic status (SES) and household factors. This study examined whether these factors were associated with delays in diagnostic resolution among patients with cancer screening abnormalities and whether patient navigation ameliorated these delays. METHODS: This study analyzed data from 5 of 10 centers of the National Cancer Institute's Patient Navigation Research Program, which collected SES and household data on employment, income, education, housing, marital status, and household composition. The primary outcome was the time to diagnostic resolution after a cancer screening abnormality. Separate adjusted Cox proportional hazard models were fit for each SES and household factor, and an interaction between that factor and the intervention status was included. RESULTS: Among the 3777 participants (1968 in the control arm and 1809 in the navigation intervention arm), 91% were women, and the mean age was 44 years; 43% were Hispanic, 28% were white, and 27% were African American. Within the control arm, the unemployed experienced a longer time to resolution than those employed full-time (hazard ratio [HR], 0.85; P = .02). Renters (HR, 0.81; P = .02) and those with other (ie, unstable) housing (HR, 0.60; P < .001) had delays in comparison with homeowners. Never married (HR, 0.70; P < .001) and previously married participants (HR, 0.85; P = .03) had a longer time to care than married participants. There were no differences in the time to diagnostic resolution with any of these variables within the navigation intervention arm. CONCLUSIONS: Delays in diagnostic resolution exist by employment, housing type, and marital status. Patient navigation eliminated these disparities in the study sample. These findings demonstrate the value of providing patient navigation to patients at high risk for delays in cancer care.


Subject(s)
Healthcare Disparities , Neoplasms/therapy , Patient Navigation , Adult , Female , Humans , Male , Middle Aged , Proportional Hazards Models , Social Class
14.
Health Qual Life Outcomes ; 13: 46, 2015 Apr 09.
Article in English | MEDLINE | ID: mdl-25890070

ABSTRACT

BACKGROUND: Parents often experience stress-related complications when their child requires blood and marrow transplant (BMT). Previous studies have described the emotional toll BMT places on parents during the acute phase of care and within the context of clinical complications. In this paper we introduce the Parent Impact Scale (PARimpact), designed to capture physical and emotional challenges of the child's health on the parent. The primary aim of this paper is to examine psychometric properties of PARimpact, and the secondary aim is to explore factors associated with PARimpact scores for further hypothesis generation. METHODS: This analysis used a merged dataset of two longitudinal studies. Accompanying parents (n = 363) of children undergoing BMT were surveyed up to six times from pre-BMT baseline to one year after their child's BMT. For this analysis, pre-BMT baseline responses to PARimpact were used to examine the factor structure with Principal Component Analysis (PCA) and Exploratory Factor Analysis (EFA). Construct validity was assessed, and multivariable regression was used to examine relationships between PARimpact and BMT clinical variables. RESULTS: PCA and EFA revealed a one-factor solution with acceptable item loading; Cronbach's α was 0.83 at baseline. Hypothesized differences in known groups were detected for BMT complications with significantly higher PARimpact scores for those with vs. without each complication. In the adjusted multivariable regression models, acute graft versus host disease (b = 5.3; p = 0.03), end organ toxicity (b = 5.9; p < 0.01), and systemic infection (b = 9.1; p < 0.01) were associated with significantly higher mean PARimpact scores in the first 3 months following transplant. After the first 3 months to 1 year post BMT, systemic infection was associated with increased mean PARimpact scores (b = 19.2; p < 0.01). CONCLUSIONS: Initial results suggest that the PARimpact is valid and reliable. Our finding that clinical complications increase the impact of BMT on the caretaking parent indicates the need for BMT healthcare professionals to identify these events and help parents navigate the BMT course. Clinical application of the PARimpact scale should be considered to identify high-risk families and provide targeted interventions to augment care.


Subject(s)
Blood Transfusion/psychology , Bone Marrow Transplantation/psychology , Child Welfare/psychology , Parents/psychology , Psychometrics/instrumentation , Quality of Life/psychology , Stress, Psychological , Adult , Child , Child, Preschool , Data Collection , Emotions , Factor Analysis, Statistical , Female , Humans , Infant , Longitudinal Studies , Male , Middle Aged , Reproducibility of Results
15.
Support Care Cancer ; 23(7): 1997-2006, 2015 Jul.
Article in English | MEDLINE | ID: mdl-25519755

ABSTRACT

PURPOSE: To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time. METHODS: Measures for this analysis, including the Parent-Patient Activation Measure (Parent-PAM), were completed by parents (N = 198) prior to their child's HSCT preparative regimen and again at 6 months post-HSCT. Clinical data were also collected. A repeated measures model was built to estimate the association between clinical and demographic factors and parent well-being on Parent-PAM scores. Interactions with time were considered to test for changing effects over time. RESULTS: Throughout the HSCT course, older parent age was associated with lower Parent-PAM scores (ß = -0.29, p = 0.02) and never being married was associated with higher scores (versus married, ß = 12.27, p = 0.03). While higher parent emotional functioning scores were not associated with activation at baseline, they were important at 6 months (baseline, ß = -0.002, p = 0.96; interaction, ß = 0.14, p = 0.03). At baseline, longer duration of illness was associated with increased activation, but this effect diminished with time (baseline, ß = 3.29, p = 0.0002; interaction, ß = -2.40, p = 0.02). Activation levels dropped for parents of children who went from private to public insurance (baseline, ß = 2.95, p = 0.53; interaction, ß = -13.82, p = 0.004). Clinical events did not affect Parent-PAM scores. CONCLUSIONS: Our findings reveal important changes in the factors associated with parent activation in the first 6 months after pediatric HSCT. These findings may reflect the emotional and financial toll of pediatric HSCT on parent activation.


Subject(s)
Hematopoietic Stem Cell Transplantation/methods , Hematopoietic Stem Cell Transplantation/psychology , Parent-Child Relations , Parents/psychology , Adult , Child , Demography , Emotions , Female , Humans , Male , Neoplasms/psychology , Neoplasms/therapy , Personal Satisfaction , Randomized Controlled Trials as Topic
16.
Qual Life Res ; 24(1): 31-9, 2015 Jan.
Article in English | MEDLINE | ID: mdl-24129669

ABSTRACT

PURPOSE: To test whether longitudinally measured health-related quality of life (HRQL) predicts transplant-related mortality (TRM) in pediatric hematopoietic stem cell transplant (HSCT). METHODS: The predictors of interest were emotional functioning, physical functioning, role functioning, and global HRQL, as rated by the parent about the child up to 6 times over 12 months of follow-up and measured by the Child Health Ratings Inventories. We used joint models, specifically shared parameter models, with time to TRM as the outcome of interest and other causes of mortality as a competing risk, via the JM software package in R. Choosing shared parameter models instead of standard survival models, such as Cox models with time-dependent covariates, enabled us to address measurement error in the HRQL trajectories and appropriately handle missing data. The nonlinear trajectories for each HRQL domain were modeled by random spline functions. The survival submodels were adjusted for baseline patient, family, and transplant characteristics. RESULTS: Hazard ratios per one-half standard deviation difference in emotional, physical, and role functioning, and global HRQL were 0.61 (95 % CI 0.46-0.81; p < 0.001), 0.70 (0.51-0.96; p = 0.03), 0.54 (0.34-0.85; p = 0.007), and 0.57 (0.41-0.79; p < 0.001), respectively. CONCLUSIONS: HRQL trajectories were predictive of TRM in pediatric HSCT, even after adjusting the survival outcome for baseline characteristics.


Subject(s)
Health Status , Hematopoietic Stem Cell Transplantation/mortality , Hematopoietic Stem Cell Transplantation/psychology , Quality of Life/psychology , Adolescent , Adult , Child , Child, Preschool , Emotions , Humans , Male , Models, Statistical , Parents/psychology , Treatment Outcome
17.
Pediatr Blood Cancer ; 61(7): 1263-9, 2014 Jul.
Article in English | MEDLINE | ID: mdl-24482072

ABSTRACT

BACKGROUND: A high prevalence of obesity has been increasingly recognized in survivors of pediatric ALL. However, longitudinal patterns of weight change during and after treatment, and associated factors, are less well elucidated. PROCEDURE: In a retrospective cohort of 83 pediatric patients with ALL diagnosed between 1985 and 2010, we examined body mass index (BMI) status at several key time points: diagnosis; end of induction; end of consolidation; every 6 months during maintenance; and yearly for up to 5 years post-treatment. RESULTS: At diagnosis, 21% were overweight (BMI = 85-94.9th percentile) or obese (BMI ≥ 95th percentile). At the end of treatment and 5 years post-treatment, approximately 40% were overweight or obese. The mean BMI z-score was 0.2 (58th percentile) at diagnosis and increased significantly during induction (Δ = 0.5, P < 0.0001). It increased again during the first 6 months of maintenance (Δ = 0.2, P < 0.01) and did not significantly change over the remainder of maintenance (BMI z-score at the end of treatment = 0.8, 79th percentile) and 5 years post-treatment (BMI z-score = 0.7, 76th percentile). High BMI z-score at diagnosis was associated with an increased risk of being overweight/obese at treatment completion (OR = 2.9, 95% CI: 1.6-5.1). Weight gain during treatment was associated with being overweight/obese 5 years post-treatment (OR = 3.8, 95% CI: 1.1-12.5). CONCLUSION: Children with ALL are at risk of becoming overweight/obese early in treatment. Increases in weight are maintained throughout treatment and beyond. Lifestyle interventions are needed targeting weight control early during treatment, particularly for patients overweight/obese at diagnosis and those who experience substantial weight gain during treatment.


Subject(s)
Body Mass Index , Obesity , Retrospective Studies , Survivors , Weight Gain , Adolescent , Adult , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Male , Obesity/epidemiology , Obesity/etiology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology , Precursor Cell Lymphoblastic Leukemia-Lymphoma/therapy , Time Factors
18.
Open Forum Infect Dis ; 11(1): ofad622, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38204563

ABSTRACT

Background: Clostridioides difficile infection (CDI) is a leading cause of morbidity in immunocompromised hosts with increased risk of complications and recurrences. In this study, we examined the clinical effectiveness of fidaxomicin vs vancomycin in treating CDI in this patient population. Methods: This single-center retrospective study evaluated patients with CDI between 2011 and 2021. The primary outcome was a composite of clinical failure, relapse at 30 days, or CDI-related death. A multivariable cause-specific Cox proportional hazards model was used to test the relationship between treatment and the composite outcome, adjusting for confounders and treating death from other causes as a competing risk. Results: This study analyzed 238 patients who were immunocompromised and treated for CDI with oral fidaxomicin (n = 38) or vancomycin (n = 200). There were 42 composite outcomes: 4 (10.5%) in the fidaxomicin arm and 38 (19.0%) in the vancomycin arm. After adjustment for sex, number of antecedent antibiotics, CDI severity and type of immunosuppression, fidaxomicin use significantly decreased the risk of the composite outcome as compared with vancomycin (10.5% vs 19.0%; hazard ratio, 0.28; 95% CI, .08-.93). Furthermore, fidaxomicin was associated with 70% reduction in the combined risk of 30- and 90-day relapse following adjustment (hazard ratio, 0.27; 95% CI, .08-.91). Conclusions: The findings of this study suggest that the use of fidaxomicin for treatment of CDI reduces poor outcomes in patients who are immunocompromised.

19.
J Prof Nurs ; 50: 53-60, 2024.
Article in English | MEDLINE | ID: mdl-38369372

ABSTRACT

BACKGROUND: Maine (ME) and Massachusetts (MA) nursing programs aim to develop collaborative training programs, but need to identify which nurses have interest in such programs. PURPOSE: We sought to determine sociodemographics of nurses seeking advanced nursing degrees nationally, and in ME and MA using the 2018 publicly available, National Sample Survey of Registered Nurses (NSSRN). METHODS: Weighted multivariable logistic regression for advanced degree-seeking, adjusted for sociodemographics. RESULTS: Of the n = 47,274 nurses (weighted n [Wn] = 3,608,633), 90.7 % were female, 74.1 % were white, and 15.8 % sought an advanced nursing degree on average 12.7 (SD 0.2) years after their first. Females vs. males had lower odds (OR 0.63, 95%CI [0.44-0.90]) and Black vs. White race had higher odds (OR 1.30, 95%CI [1.05-1.60]) of seeking doctorates. In Maine (Wn = 20,389), age 24-29 had higher odds (OR 2.98 (95%CI [1.06-3.74]), but in Massachusetts (Wn = 101,984), age 30+ had lower odds (OR 0.32, 95%CI [0.13-0.78]) of degree-seeking vs. <24 years. Initial nursing degrees earned between 1980 and 1989 had higher odds (OR 1.99, 95%CI [1.06-3.74]) in Maine, but between 2010 and 2014 had lower odds (OR 0.32, 95%CI [0.14-0.72]) in Massachusetts of degree-seeking, vs. before 1980. CONCLUSIONS: Targets for advanced nursing training programs may vary by state and sociodemographic profile.


Subject(s)
Nurses , Male , Humans , Female , Young Adult , Adult , Maine , Massachusetts , Data Collection
20.
JACC CardioOncol ; 6(2): 200-213, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38774008

ABSTRACT

Background: Older patients with Hodgkin lymphoma (HL) often have comorbid cardiovascular disease; however, the impact of pre-existing heart failure (HF) on the management and outcomes of HL is unknown. Objectives: The aim of this study was to assess the prevalence of pre-existing HF in older patients with HL and its impact on treatment and outcomes. Methods: Linked Surveillance, Epidemiology, and End Results (SEER) and Medicare data from 1999 to 2016 were used to identify patients 65 years and older with newly diagnosed HL. Pre-existing HF, comorbidities, and cancer treatment were ascertained from billing codes and cause-specific mortality from SEER. The associations between pre-existing HF and cancer treatment were estimated using multivariable logistic regression. Cause-specific Cox proportional hazards models adjusted for comorbidities and cancer treatment were used to estimate the association between pre-existing HF and cause-specific mortality. Results: Among 3,348 patients (mean age 76 ± 7 years, 48.6% women) with newly diagnosed HL, pre-existing HF was present in 437 (13.1%). Pre-existing HF was associated with a lower likelihood of using anthracycline-based chemotherapy regimens (OR: 0.42; 95% CI: 0.29-0.60) and a higher likelihood of lymphoma mortality (HR: 1.25; 95% CI: 1.06-1.46) and cardiovascular mortality (HR: 2.57; 95% CI: 1.96-3.36) in models adjusted for comorbidities. One-year lymphoma mortality cumulative incidence was 37.4% (95% CI: 35.5%-39.5%) with pre-existing HF and 26.3% (95% CI: 25.0%-27.6%) without pre-existing HF. The cardioprotective medications dexrazoxane and liposomal doxorubicin were used in only 4.2% of patients. Conclusions: Pre-existing HF in older patients with newly diagnosed HL is common and associated with higher 1-year mortality. Strategies are needed to improve lymphoma and cardiovascular outcomes in this high-risk population.

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