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1.
J Pediatr Hematol Oncol ; 41(6): 433-437, 2019 08.
Article in English | MEDLINE | ID: mdl-30629003

ABSTRACT

Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (ß=0.49; P<0.001) and brain cancer diagnosis for their child (ß=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.


Subject(s)
Caregivers/psychology , Neoplasms/psychology , Quality of Life , Racial Groups/psychology , Self Report , Social Class , Adolescent , Adult , Child , Child, Preschool , Cross-Sectional Studies , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Male , Prognosis , Surveys and Questionnaires , Young Adult
2.
Fam Syst Health ; 34(2): 166-71, 2016 Jun.
Article in English | MEDLINE | ID: mdl-26963775

ABSTRACT

INTRODUCTION: Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. METHOD: This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. RESULTS: Multiple linear regression found that parent reported financial difficulty (ß = 0.29, t = 3.13, p = .003), greater child sleep problems (ß = 0.29 t = 2.81, p = .007), greater child pain (ß = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (ß = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (ß = -0.35, t = -2.03, p = .04) and child pain (ß = -0.30, t = -2.33, p = .02) were related to caregiver burden. DISCUSSION: Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record


Subject(s)
Adaptation, Psychological , Caregivers/psychology , Child Health , Stress, Psychological/etiology , Adolescent , Adult , Child , Child, Preschool , Cost of Illness , Cross-Sectional Studies , Female , Hematologic Diseases/psychology , Hematologic Diseases/therapy , Humans , Infant , Linear Models , Male , Middle Aged , Neoplasms/psychology , Neoplasms/therapy , Parent-Child Relations , Parents/psychology , Stress, Psychological/psychology , Surveys and Questionnaires
3.
Brain Inj ; 29(10): 1192-1198, 2015 Sep.
Article in English | MEDLINE | ID: mdl-26067625

ABSTRACT

PRIMARY OBJECTIVE: It is well-documented that survivors of paediatric brain tumour are at risk for neurocognitive deficits resulting in an increased interest in neurocognitive assessment for these youth. Given the scarcity of well-validated brief assessments for this purpose, this study examines the reliability and validity of a brief neurocognitive screening measure. RESEARCH DESIGN: Cross-sectional data on youth (aged 6-17.9) administered a brief neurocognitive screening device and broader neurocognitive batteries was collected via chart review to evaluate the reliability and validity of a brief neurocognitive screening device. METHODS AND PROCEDURES: Fifty-one youth with brain tumours and 26 youth with traumatic brain injury (TBI) were administered The Lebby-Asbell Neurocognitive Screening Examination (LANSE) during clinic visits. A sub-set of children were administered a more comprehensive neurocognitive evaluation and scores from the LANSE and these evaluations were compared to assess preliminary validity. MAIN OUTCOME AND RESULTS: Most LANSE sub-scales demonstrated adequate reliability and preliminary validity with some exceptions. Comparison of youth with brain tumours to those with a TBI revealed a similar pattern of potential neurocognitive impairment across several cognitive domains. CONCLUSIONS: This study demonstrates the preliminary reliability and validity of a brief neurocognitive screening examination for youth with brain tumours.

4.
J Investig Med ; 62(5): 804-7, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24781553

ABSTRACT

AIM: We evaluated the prevalence and progression of chronic kidney disease (CKD) during the 5-year period in a cohort of patients with sickle cell disease (SCD) aged 18 years and older. METHODS: We studied 98 patients with SCD. Chronic kidney disease stages I through V were defined based on estimated glomerular filtration rate (eGFR), and albuminuria grades were defined based on spot urine protein-to-creatinine ratio according to the 2012 Kidney Disease Improving Global Outcomes recommendations. In patients with eGFR of greater than 60 mL/min per 1.73 m(2), CKD was diagnosed if grade A2 or A3 albuminuria was present. Chronic kidney disease progression was defined as an increase in CKD stage with an additional eGFR reduction of more than 25% from baseline. RESULTS: At baseline, 28.6% of patients had CKD. After a mean follow-up of 5.0 (SD, 0.9) years, 17 patients developed new CKD and the overall CKD prevalence increased to 41.8%. In addition, 8 patients experienced CKD progression. The following baseline variables were associated with the development and progression of CKD in univariate analysis: older age (P = 0.003), higher systolic blood pressure (BP; P = 0.003), lower eGFR (P = 0.001), higher serum creatinine (P = 0.001), and A3 albuminuria (P = 0.008). In multivariate analysis, baseline A3 albuminuria (adjusted odds ratio, 5.0; 95% confidence interval, 1.1-24.3; P = 0.048) and each 1-mm Hg increase in systolic BP (adjusted odds ratio, 1.04; 95% confidence interval, 1.0-1.07; P = 0.039) predicted CKD development and progression. CONCLUSIONS: Chronic kidney disease is common in patients with SCD and its prevalence increases with age. Several baseline modifiable and nonmodifiable factors were associated with the development and progression of CKD in patients with SCD. Strategies targeting BP control and proteinuria may be beneficial for individuals with SCD.


Subject(s)
Anemia, Sickle Cell/diagnosis , Anemia, Sickle Cell/epidemiology , Disease Progression , Renal Insufficiency, Chronic/diagnosis , Renal Insufficiency, Chronic/epidemiology , Adult , Cohort Studies , Female , Follow-Up Studies , Humans , Male , Middle Aged , Prevalence , Retrospective Studies , Young Adult
5.
Hemoglobin ; 37(4): 325-32, 2013.
Article in English | MEDLINE | ID: mdl-23600469

ABSTRACT

Leg ulcers are a debilitating complication of patients with sickle cell disease, and their frequency in North America was reported to be 2.5% by the Cooperative Study of Sickle Cell Disease more than 20 years ago. We sought to determine if the frequency of leg ulcers in sickle cell patients in the United States had declined and to assess which treatments providers use most commonly. We sent an e-mail survey to health professionals belonging to the national Sickle Cell Adult Provider Network. Responses were obtained from 31 of them (26.0%). Most of them (96.0%) reported having some patients with leg ulcers. Providers reported a total of 185 patients with active leg ulcers and 224 in the previous 5 years, for a total of 409 patients. Hb SS (homozygous sickle cell anemia) was the most common genotype of affected individuals, followed by Hb SC (double heterozygote for Hb S [ß6(A3)Glu→Val, GAG>GTG; HBB: c.20A>T] and Hb C [ß6(A3)Glu→Lys, GAG>AAG; HBB: c.19G>A]). Males showed a 2:1 predominance. Two-thirds of patients were treated with either hydroxyurea (HU) or transfusion therapy and most used compression stockings and topical therapies as directed by wound care services. We conclude that leg ulcers continue to be a debilitating complication of young adults with sickle cell disease, despite improved supportive care and the widespread use of disease modifying agents such HU and transfusion. While some providers offer office-based ulcer care, the majority prefer specialty consultation including podiatry, plastic surgery and dermatology. Despite their frequency, there is no clear consensus among providers as to the best treatment.


Subject(s)
Anemia, Sickle Cell/complications , Leg Ulcer/epidemiology , Leg Ulcer/etiology , Adolescent , Adult , Anemia, Sickle Cell/genetics , Child , Child, Preschool , Female , Genotype , Health Care Surveys , Health Personnel , Hemoglobin, Sickle/genetics , Humans , Male , Middle Aged , Practice Patterns, Physicians' , Surveys and Questionnaires , United States/epidemiology , Young Adult
6.
J Pediatr Hematol Oncol ; 35(6): e265-8, 2013 Aug.
Article in English | MEDLINE | ID: mdl-23018567

ABSTRACT

Neonatal chondrodysplasia punctata (CDP) is characterized by epiphyseal stippling and midfacial hypoplasia. CDP is usually inherited, but can be acquired because of maternal vitamin K deficiency. We describe an infant with CDP born to a teenager with sickle cell anemia and transfusional iron overload. The mother had severe liver fibrosis, elevated liver iron concentration (34 mg Fe/g), and coagulopathy, but no gestational use of warfarin. Fetal abnormalities were attributed to vitamin K deficiency secondary to liver dysfunction from iron toxicity. Treatment of iron overload among women with sickle cell anemia of childbearing potential is important to avoid possible CDP in newborns.


Subject(s)
Abnormalities, Drug-Induced , Chondrodysplasia Punctata/congenital , Iron Overload/complications , Pregnancy Complications/etiology , Transfusion Reaction , Adolescent , Anemia, Sickle Cell/therapy , Chondrodysplasia Punctata/etiology , Female , Humans , Infant, Newborn , Liver Diseases/etiology , Male , Nasal Bone/abnormalities , Pregnancy , Pregnancy Complications/pathology , Vitamin K Deficiency/complications , Warfarin/adverse effects
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