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1.
Support Care Cancer ; 30(6): 5311-5318, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35278137

ABSTRACT

OBJECTIVE: Rates of depression identification in oncology settings and referral to psychosocial services remain low. Patients with lung cancer face an elevated risk of depression relative to patients with other cancers. This study explored perceptions of somatic and affective symptoms and psychosocial care utilization among younger and older lung cancer survivors. METHODS: We conducted in-depth interviews with 20 adults at two academic medical centers in Boston, MA, who had received a lung cancer diagnosis in the past 24 months. A semi-structured interview guide was used to assess experiences with, and perceptions of, depression symptoms and psychosocial services. Interviews were audio-recorded, transcribed, and coded to identify themes. We also explored differences between younger (<65years; N=9) and older (>65years; N=11) patients. RESULTS: Participants commonly described somatic symptoms (i.e., changes in appetite, sleep, or energy levels) and affective symptoms (i.e., worry, fear, sadness) as side effects of cancer treatment. Older participants more commonly contextualized these symptoms with information about how they impacted daily life. Both younger and older participants faced barriers to accessing psychosocial services, with older adults more commonly referencing stigma of service referral and utilization. DISCUSSION: Patients with lung cancer associated both somatic and affective symptoms with their cancer and its treatment, with age differences in how symptoms were described and how psychosocial referrals may be perceived. More systematic integration of psychosocial care into cancer care may help to increase the identification of depression in lung cancer and reduce barriers to psychosocial service utilization.


Subject(s)
Cancer Survivors , Lung Neoplasms , Psychiatric Rehabilitation , Affective Symptoms , Aged , Humans , Lung Neoplasms/psychology , Survivors/psychology
2.
Genet Med ; 22(2): 317-325, 2020 02.
Article in English | MEDLINE | ID: mdl-31417190

ABSTRACT

PURPOSE: Current American Academy of Pediatrics guidelines for children with Down syndrome (DS) recommend a complete blood count (CBC) at birth and hemoglobin annually to screen for iron deficiency (ID) and ID anemia (IDA) in low-risk children. We aimed to determine if macrocytosis masks the diagnosis of ID/IDA and to evaluate the utility of biochemical and red blood cell indices for detecting ID/IDA in DS. METHODS: We reviewed data from 856 individuals from five DS specialty clinics. Data included hemoglobin, mean corpuscular volume, red cell distribution width (RDW), percent transferrin saturation (TS), ferritin, and c-reactive protein. Receiver operating characteristic curves were calculated. RESULTS: Macrocytosis was found in 32% of the sample. If hemoglobin alone was used for screening, all individuals with IDA would have been identified, but ID would have been missed in all subjects. RDW had the highest discriminability of any single test for ID/IDA. The combination of RDW with ferritin or TS led to 100% sensitivity, and RDW combined with ferritin showed the highest discriminability for ID/IDA. CONCLUSION: We provide evidence to support that a CBC and ferritin be obtained routinely for children over 1 year old with DS rather than hemoglobin alone for detection of ID.


Subject(s)
Anemia, Iron-Deficiency/diagnosis , Down Syndrome/metabolism , Ferritins/analysis , Anemia/diagnosis , C-Reactive Protein/analysis , Child , Child, Preschool , Erythrocyte Indices/genetics , Erythrocytes, Abnormal/metabolism , Female , Ferritins/blood , Hematologic Diseases/metabolism , Hemoglobins/analysis , Humans , Infant , Iron/metabolism , Male , Mass Screening/methods , ROC Curve
3.
Genet Med ; 22(4): 767-776, 2020 04.
Article in English | MEDLINE | ID: mdl-31767984

ABSTRACT

PURPOSE: An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease. METHODS: Since 2017, an international consortium of DS clinics assembled a database of patients with unexplained regression and age- and sex-matched controls. Standardized data on clinical symptoms and tiered medical evaluations were collected. Elements of the proposed definition of unexplained regression in DS were analyzed by paired comparisons between regression cases and matched controls. RESULTS: We identified 35 patients with DS and unexplained regression, with a mean age at regression of 17.5 years. Diagnostic features differed substantially between regression cases and matched controls (p < 0.001 for all but externalizing behaviors). Patients with regression had four times as many mental health concerns (p < 0.001), six times as many stressors (p < 0.001), and seven times as many depressive symptoms (p < 0.001). Tiered medical evaluation most often identified abnormalities in vitamin D 25-OH levels, polysomnograms, thyroid peroxidase antibodies, and celiac screens. Analysis of the subset of patients with nondiagnostic medical evaluations reinforced the proposed definition. CONCLUSIONS: Our case-control evidence supports a proposed definition of unexplained regression in Down syndrome. Establishing this clinical definition supports future research and investigation of an underlying mechanism.


Subject(s)
Autism Spectrum Disorder , Down Syndrome , Adolescent , Case-Control Studies , Databases, Factual , Down Syndrome/diagnosis , Down Syndrome/epidemiology , Humans , Young Adult
5.
Am J Med Genet A ; 173(6): 1539-1545, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28332275

ABSTRACT

The goals of this undertaking were to assess the outcomes of thyroid screening tests and adherence to thyroid screening guidelines across five Down syndrome (DS) specialty clinics in various states. Data related to thyroid screening were collected for 663 individuals across five clinics specializing in the comprehensive care of individuals with DS for a period of 1 year. Of the 663 participants, 47.7% of participants had a TSH and free T4 ordered at their DS specialty clinic visit. Approximately 19.0% (60/316) had a new thyroid disorder diagnosis made. We conclude that a sizable proportion of the patients with DS are not up-to-date on current guidelines when they present to a DS specialty clinic, while adherence to thyroid screening guidelines helps facilitate early diagnoses. Hypothyroidism is prevalent in the population, consistent with reported literature. DS specialty clinics can help patients stay current on screening guidelines.


Subject(s)
Down Syndrome/physiopathology , Hypothyroidism/physiopathology , Thyroid Diseases/physiopathology , Adolescent , Adult , Aged , Child , Child, Preschool , Down Syndrome/blood , Down Syndrome/complications , Female , Humans , Hypothyroidism/blood , Hypothyroidism/complications , Infant , Male , Middle Aged , Registries , Thyroid Diseases/blood , Thyroid Diseases/complications , Thyroid Function Tests , Thyroid Gland/physiopathology , Thyrotropin/blood , Thyroxine/blood
6.
Am J Med Genet A ; 170(12): 3098-3105, 2016 12.
Article in English | MEDLINE | ID: mdl-27605215

ABSTRACT

The main purposes of this undertaking were to determine how often patients with Down syndrome (DS) are screened for celiac disease (CD) across five DS specialty clinics, which symptoms of CD are most often reported to DS specialty providers at these clinics, and, how many individuals were diagnosed with CD by these clinics. This was accomplished by following 663 individuals with DS for 1 year, across five clinics in different states specializing in the comprehensive care of people with DS. Of the 663 participants, 114 individuals were screened for CD at their visit to a DS specialty clinic. Protracted constipation (43.2%) and refractory behavioral problems (23.7%) were symptoms most often reported to DS specialty providers. During the 1 year study period, 13 patients screened positive for CD by serology. Of those, eight underwent duodenal biopsy, and three were diagnosed with CD. We conclude that CD is an important consideration in the comprehensive care of individuals with DS. However, while symptoms are common, diagnoses are infrequent in DS specialty clinics. © 2016 Wiley Periodicals, Inc.


Subject(s)
Celiac Disease/diagnosis , Down Syndrome/diagnosis , Genetic Counseling , Adolescent , Adult , Biopsy , Celiac Disease/complications , Celiac Disease/physiopathology , Child , Child, Preschool , Down Syndrome/complications , Down Syndrome/physiopathology , Female , Humans , Infant , Infant, Newborn , Male , Young Adult
7.
J Holist Nurs ; 34(1): 56-63, 2016 Mar.
Article in English | MEDLINE | ID: mdl-25911024

ABSTRACT

Although close associations between tinnitus and posttraumatic stress disorder (PTSD) among war veterans has been documented, there is limited research that explores evidence-based, efficacious interventions to treat the condition in this particular population. This article presents a case of three war veterans with PTSD symptoms who received a series of acupuncture treatments for tinnitus with positive outcomes. Even though the article presents cases of only three veterans and was based on self-reports, there were very clear trends on how veterans with tinnitus symptoms responded to acupuncture treatments. Information generated from this case presentation is a good starting place in exploring evidence-based approaches in treating tinnitus symptoms in war veterans with PTSD.


Subject(s)
Acupuncture Therapy , Combat Disorders/therapy , Stress Disorders, Post-Traumatic/complications , Stress Disorders, Post-Traumatic/therapy , Tinnitus/complications , Tinnitus/therapy , Veterans/psychology , Adult , Combat Disorders/physiopathology , Combat Disorders/psychology , Evidence-Based Medicine , Holistic Health , Humans , Male , Middle Aged , Patient Satisfaction , Severity of Illness Index , Stress Disorders, Post-Traumatic/physiopathology , Stress Disorders, Post-Traumatic/psychology , Stress, Physiological , Time Factors , Tinnitus/physiopathology , Treatment Outcome , United States , Warfare
8.
Am J Med Genet A ; 167A(11): 2520-6, 2015 Nov.
Article in English | MEDLINE | ID: mdl-26249752

ABSTRACT

The Down Syndrome Study Group (DSSG) was founded in 2012 as a voluntary, collaborative effort with the goal of supporting evidenced-based health care guidelines for individuals with Down syndrome (DS). Since then, 5 DS specialty clinics have collected prospective, longitudinal data on medical conditions that co-occur with DS. Data were entered by clinical staff or trained designees into the National Down Syndrome Patient Database, which we created using REDCap software. In our pilot year, we enrolled 663 participants across the U.S., ages 36 days to 70 years, from multiple racial and ethnic backgrounds. Here we report: (i) the demographic distribution of participants enrolled, (ii) a detailed account of our database infrastructure, and (iii) lessons learned during our pilot year to assist future researchers with similar goals for other patient populations.


Subject(s)
Databases, Factual , Down Syndrome/epidemiology , Multicenter Studies as Topic , Registries , Adolescent , Adult , Child , Child, Preschool , Cooperative Behavior , Demography , Female , Humans , Infant , Infant, Newborn , Interdisciplinary Studies , Male , United States/epidemiology , Young Adult
9.
J Clin Oncol ; 32(2): 107-13, 2014 Jan 10.
Article in English | MEDLINE | ID: mdl-24323033

ABSTRACT

PURPOSE: This study examined race by sex differences in depression symptoms and psychosocial service use (pastors, social workers, mental health workers, support groups) among patients with lung cancer. PATIENTS AND METHODS: The multiregional Cancer Care Outcomes Research and Surveillance study surveyed black and white adults with stages I to III lung cancer (n = 1,043) about depression symptoms, interest in help for mood, and psychosocial service use. Multivariable logistic regression was used to evaluate race/sex differences in depression symptoms (modified Center for Epidemiologic Studies Depression Scale ≥ 6) and psychosocial service use, independent of demographic, clinical, psychosocial, and behavioral covariates. RESULTS: A total of 18.2% screened positive for depression symptoms. This proportion was highest among black men (24.7%), followed by white women (20.6%), black women (15.8%), and white men (15.0%). In adjusted analyses, white women showed greater risk for depression symptoms relative to black women (P = .01) and white men (P = .002), with no other differences among groups. Black patients were less likely than white patients to receive desired help for mood from their doctors (P = .02), regardless of sex. Among all patients, black women were most likely to have contact with pastoral care and social work. CONCLUSION: Race and sex interacted to predict risk of depression symptoms. Covariates accounted for elevated risk among black men. White women showed greater risk than black women and white men, independent of covariates. Black patients may experience greater barriers to receiving help for mood from their doctors. Race by sex differences in contact with psychosocial services highlight potential differences in the extent to which services are available, acceptable, and/or sought by patients.


Subject(s)
Black or African American/statistics & numerical data , Depression/therapy , Lung Neoplasms/complications , Mental Health Services/statistics & numerical data , White People/statistics & numerical data , Cohort Studies , Depression/complications , Depression/ethnology , Female , Healthcare Disparities/statistics & numerical data , Humans , Logistic Models , Lung Neoplasms/ethnology , Lung Neoplasms/pathology , Male , Multivariate Analysis , Neoplasm Staging , Outcome Assessment, Health Care/methods , Outcome Assessment, Health Care/statistics & numerical data , Population Surveillance/methods , Sex Factors , United States/epidemiology
10.
J Psychosoc Oncol ; 31(2): 123-35, 2013.
Article in English | MEDLINE | ID: mdl-23514250

ABSTRACT

In the United States, Black men are at higher risk than White men for lung cancer mortality whereas rates are comparable between Black and White women. This article draws from empirical work in lung cancer, mental health, and health disparities to highlight that race and depression may overlap in predicting lower treatment access and utilization and poorer quality of life among patients. Racial barriers to depression identification and treatment in the general population may compound these risks. Prospective data are needed to examine whether depression plays a role in racial disparities in lung cancer outcomes.


Subject(s)
Black or African American/psychology , Depression/ethnology , Depression/therapy , Healthcare Disparities/ethnology , Lung Neoplasms/ethnology , Empirical Research , Humans , Lung Neoplasms/psychology , Mental Health Services/statistics & numerical data , Outcome Assessment, Health Care , Quality of Life/psychology , Risk Factors , United States
11.
Alzheimers Dement ; 8(6): 496-501, 2012 Nov.
Article in English | MEDLINE | ID: mdl-23102120

ABSTRACT

Down syndrome (DS) is one of the most common causes of intellectual disability. Although DS accounts for only 15% of all individuals with intellectual disabilities, adults with DS account for approximately 60% of individuals with intellectual disabilities and Alzheimer's disease. This is thought to be because of overproduction of the ß-amyloid (Aß) protein due to trisomy for the Aß precursor protein gene on chromosome 21. Pittsburgh compound B (PiB) is a noninvasive in vivo positron emission tomography tracer used to image amyloid deposition in living humans. Studies using PiB have shown an age-dependent asymptomatic amyloid deposition in more than 20% of the cognitively normal elderly population. Presymptomatic carriers of presenilin (PS-1) and Aß precursor protein gene mutations who are destined to develop Alzheimer's disease also show preclinical amyloid deposition. This report describes a pilot study involving the use of PiB in seven adults with DS (age: 20-44 years). Compared with objective cutoffs for amyloid positivity in older non-DS cognitively normal control subjects, only two of the seven DS subjects (age: 38 and 44 years) showed increased PiB retention. The remaining five subjects aged between 20 and 35 years showed no detectable increase in PiB retention. Interestingly, the two subjects who showed elevated PiB retention showed a striatal-predominant pattern similar to that previously reported for PS-1 mutation carriers. These results demonstrate the feasibility of conducting PiB positron emission tomography scanning in this special population, and suggest a link between Aß overproduction and early striatal deposition of fibrillar Aß.


Subject(s)
Amyloidogenic Proteins/analysis , Aniline Compounds , Brain/diagnostic imaging , Down Syndrome/diagnostic imaging , Radiopharmaceuticals , Thiazoles , Adult , Female , Humans , Male , Neuroimaging/methods , Pilot Projects , Positron-Emission Tomography , Young Adult
12.
Oncologist ; 16(10): 1428-34, 2011.
Article in English | MEDLINE | ID: mdl-21964005

ABSTRACT

Racial disparities exist in lung cancer incidence, morbidity, and mortality. Smoking is responsible for the majority of lung cancers, and racial disparities also exist in smoking outcomes. Black smokers are less likely than white smokers to engage in evidence-based tobacco treatment, and black smokers are less likely than white smokers to stop smoking. Continued smoking following a lung cancer diagnosis is a potential indicator of poor lung cancer treatment outcomes, yet lung cancer patients who smoke are unlikely to receive evidence-based tobacco treatment. The risks from continued smoking after diagnosis deserve attention as a modifiable factor toward lessening racial disparities in lung cancer outcomes.


Subject(s)
Adenocarcinoma/ethnology , Adenocarcinoma/therapy , Black People , Healthcare Disparities/ethnology , Lung Neoplasms/ethnology , Lung Neoplasms/therapy , Smoking Cessation/ethnology , Smoking/ethnology , White People , Adenocarcinoma of Lung , Female , Humans , Male , Racial Groups , Smoking/adverse effects , Smoking Cessation/methods , Treatment Outcome
15.
ABNF J ; 16(6): 118-23, 2005.
Article in English | MEDLINE | ID: mdl-16382795

ABSTRACT

BACKGROUND: A higher proportion of African-American caregivers reported having suffered physical and mental problems because of caregiving (U. S. Department of Health & Human Services, 2005). PURPOSE: The purpose of this study was to examine the coping strategies of African-American daughters who have functioned as caregivers. The Neuman Systems model was utilized as the framework for this study. METHOD: An exploratory design utilizing qualitative and quantitative methodologies was conducted in two phases. Phase I (N = 44) consisted of a series of focus groups sessions and Phase II (N = 106) participants completed the Basic Interview Schedule Survey. DISCUSSION: Findings revealed than other groups to report dementia and stroke in their care recipients that daughters who attended support groups had increased family involvement, were religious and coped better with caregiving. CONCLUSION: This study concluded that religion gave most participants a strong tolerance for the caregiving situation and served to mediate the caregiving strain.


Subject(s)
Adaptation, Psychological , Attitude to Health/ethnology , Black or African American/ethnology , Caregivers/psychology , Nuclear Family/ethnology , Activities of Daily Living , Adult , Black or African American/education , Aged , Caregivers/education , Cost of Illness , Female , Focus Groups , Home Nursing/psychology , Humans , Middle Aged , Models, Nursing , New England , Nursing Methodology Research , Parents/psychology , Qualitative Research , Religion and Psychology , Self-Help Groups , Social Support , Southeastern United States , Surveys and Questionnaires
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