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1.
Appl Clin Inform ; 15(3): 460-468, 2024 May.
Article in English | MEDLINE | ID: mdl-38636542

ABSTRACT

OBJECTIVES: To assess primary care physicians' (PCPs) perception of the need for serious illness conversations (SIC) or other palliative care interventions in patients flagged by a machine learning tool for high 1-year mortality risk. METHODS: We surveyed PCPs from four Brigham and Women's Hospital primary care practice sites. Multiple mortality prediction algorithms were ensembled to assess adult patients of these PCPs who were either enrolled in the hospital's integrated care management program or had one of several chronic conditions. The patients were classified as high or low risk of 1-year mortality. A blinded survey had PCPs evaluate these patients for palliative care needs. We measured PCP and machine learning tool agreement regarding patients' need for an SIC/elevated risk of mortality. RESULTS: Of 66 PCPs, 20 (30.3%) participated in the survey. Out of 312 patients evaluated, 60.6% were female, with a mean (standard deviation [SD]) age of 69.3 (17.5) years, and a mean (SD) Charlson Comorbidity Index of 2.80 (2.89). The machine learning tool identified 162 (51.9%) patients as high risk. Excluding deceased or unfamiliar patients, PCPs felt that an SIC was appropriate for 179 patients; the machine learning tool flagged 123 of these patients as high risk (68.7% concordance). For 105 patients whom PCPs deemed SIC unnecessary, the tool classified 83 as low risk (79.1% concordance). There was substantial agreement between PCPs and the tool (Gwet's agreement coefficient of 0.640). CONCLUSIONS: A machine learning mortality prediction tool offers promise as a clinical decision aid, helping clinicians pinpoint patients needing palliative care interventions.


Subject(s)
Machine Learning , Palliative Care , Physicians, Primary Care , Humans , Female , Male , Aged , Middle Aged , Surveys and Questionnaires , Mortality
2.
Elife ; 122024 Mar 27.
Article in English | MEDLINE | ID: mdl-38536879

ABSTRACT

Recombinant adeno-associated viruses (rAAVs) are the predominant gene therapy vector. Several rAAV vectored therapies have achieved regulatory approval, but production of sufficient rAAV quantities remains difficult. The AAV Rep proteins, which are essential for genome replication and packaging, represent a promising engineering target for improvement of rAAV production but remain underexplored. To gain a comprehensive understanding of the Rep proteins and their mutational landscape, we assayed the effects of all 39,297 possible single-codon mutations to the AAV2 rep gene on AAV2 production. Most beneficial variants are not observed in nature, indicating that improved production may require synthetic mutations. Additionally, the effects of AAV2 rep mutations were largely consistent across capsid serotypes, suggesting that production benefits are capsid independent. Our results provide a detailed sequence-to-function map that enhances our understanding of Rep protein function and lays the groundwork for Rep engineering and enhancement of large-scale gene therapy production.


Subject(s)
Capsid Proteins , Genetic Vectors , Genetic Vectors/genetics , Mutation , Capsid Proteins/genetics , Capsid , Mutagenesis , Dependovirus/genetics
3.
Am J Manag Care ; 30(3): e73-e77, 2024 Mar 01.
Article in English | MEDLINE | ID: mdl-38457825

ABSTRACT

OBJECTIVES: COVID-19 has exacerbated barriers to routine testing for chronic disease management. This study investigates whether a home hemoglobin A1c (HbA1c) test kit intervention increases frequency of HbA1c testing and leads to changes in HbA1c 6 months post testing and whether self-reinforcement education improves maintenance of HbA1c testing. STUDY DESIGN: Retrospective analysis of a randomized, controlled quality improvement intervention among members with type 2 diabetes (T2D) in a large commercial health plan. METHODS: Participants were 41,214 commercial fully insured members with T2D without an HbA1c test in the past 6 months or with only 1 HbA1c test in the last 12 months. Members were randomly assigned to either a control group or an at-home HbA1c testing intervention group consisting of either an opt-in test or a direct-to-member opt-out HbA1c test kit shipment. A third cohort of members was assigned to a self-reinforcement group to encourage continued testing twice per year. Main outcomes were HbA1c testing rates and HbA1c levels (in %). RESULTS: A total of 11.1% (508 of 4590) at-home HbA1c kits were completed. At-home HbA1c test kits increased testing rates by 4.9% compared with controls (P < .001). Members with an HbA1c level of at least 7% who requested and completed at-home HbA1c testing had a 0.38% reduction in HbA1c in the 6 months post intervention when controlling for baseline HbA1c (P < .001). Members who received self-reinforcement messaging had a 0.37% HbA1c reduction post intervention (P = .015). CONCLUSIONS: This novel, at-home approach to test HbA1c is an effective intervention to increase testing rates and facilitate HbA1c reduction over time in patients with T2D.


Subject(s)
COVID-19 , Diabetes Mellitus, Type 2 , Humans , Diabetes Mellitus, Type 2/diagnosis , Diabetes Mellitus, Type 2/therapy , Glycated Hemoglobin , Glycemic Control , Retrospective Studies
4.
J Clin Endocrinol Metab ; 109(4): e1345-e1358, 2024 Mar 15.
Article in English | MEDLINE | ID: mdl-38066593

ABSTRACT

OBJECTIVES: Insulin resistance is associated with elevations in plasma branched-chain amino acids (BCAAs). BCAAs compete with aromatic amino acids including tryptophan for uptake into ß cells. To explore relationships between BCAAs and tryptophan metabolism, adiposity, and glucose tolerance, we compared urine metabolites in overweight/obese youth with type 2 diabetes (T2D) with those in nondiabetic overweight/obese and lean youth. METHODS: Metabolites were measured in 24-hour and first-morning urine samples of 56 nondiabetic adolescents with overweight/obesity, 42 adolescents with T2D, and 43 lean controls, aged 12 to 21 years. Group differences were assessed by Kruskal Wallis or ANOVA. RESULTS: Groups were comparable for age, pubertal status, and ethnicity. Youth with T2D were predominantly female and had highest percent body fat. BCAAs, branched-chain ketoacids (BCKAs), tryptophan, and kynurenine were higher in urine of subjects with T2D. There were no differences between lean controls and nondiabetic youth with overweight/obesity. T2D was associated with diversion of tryptophan from the serotonin to the kynurenine pathway, with higher urinary kynurenine/serotonin ratio and lower serotonin/tryptophan and 5-HIAA/kynurenine ratios. Urinary BCAAs, BCKAs, tryptophan, and ratios reflecting diversion to the kynurenine pathway correlated positively with metrics of body fat and hemoglobin A1c. Increases in these metabolites in the obese T2D group were more pronounced and statistically significant only in adolescent girls. CONCLUSION: Increases in urinary BCAAs and BCKAs in adolescent females with T2D are accompanied by diversion of tryptophan metabolism from the serotonin to the kynurenine pathway. These adaptations associate with higher risks of T2D in obese adolescent females than adolescent males.


Subject(s)
Diabetes Mellitus, Type 2 , Pediatric Obesity , Humans , Female , Adolescent , Male , Tryptophan , Overweight/complications , Kynurenine , Sex Characteristics , Serotonin , Pediatric Obesity/complications , Amino Acids, Branched-Chain
5.
Front Med (Lausanne) ; 10: 1272900, 2023.
Article in English | MEDLINE | ID: mdl-37937142

ABSTRACT

Background: Urinary stone disease (USD) historically has affected older men, but studies suggest recent increases in women, leading to a near identical sex incidence ratio. USD incidence has doubled every 10 years, with disproportionate increases amongst children, adolescent, and young adult (AYA) women. USD stone composition in women is frequently apatite (calcium phosphate), which forms in a higher urine pH, low urinary citrate, and an abundance of urinary uric acid, while men produce more calcium oxalate stones. The reasons for this epidemiological trend are unknown. Methods: This perspective presents the extent of USD with data from a Canadian Province and a North American institution, explanations for these findings and offers potential solutions to decrease this trend. We describe the economic impact of USD. Findings: There was a significant increase of 46% in overall surgical interventions for USD in Ontario. The incidence rose from 47.0/100,000 in 2002 to 68.7/100,000 population in 2016. In a single United States institution, the overall USD annual unique patient count rose from 10,612 to 17,706 from 2015 to 2019, and the proportion of women with USD was much higher than expected. In the 10-17-year-old patients, 50.1% were girls; with 57.5% in the 18-34 age group and 53.6% in the 35-44 age group. The roles of obesity, diet, hormones, environmental factors, infections, and antibiotics, as well as the economic impact, are discussed. Interpretation: We confirm the significant increase in USD among women. We offer potential explanations for this sex disparity, including microbiological and pathophysiological aspects. We also outline innovative solutions - that may require steps beyond typical preventive and treatment recommendations.

6.
J Am Dent Assoc ; 154(5): 384-392.e4, 2023 05.
Article in English | MEDLINE | ID: mdl-36973159

ABSTRACT

BACKGROUND: Despite health disparities and barriers to medical care being well documented in the literature, transgender and gender nonbinary (TGNB) people's experiences and expectations with regard to oral health care remain understudied. The authors examined gender identity-related factors influencing experiences in the dental setting, aspects of subjective oral health, and avoidance of oral health care. METHODS: One-hundred eighteen TGNB people aged 13 through 70 years completed a 32-item questionnaire designed for this study. Data analysis relied on descriptive methods and bivariate comparisons using a conventional P < .05 statistical significance criterion. Qualitative description analysis was used to identify emerging themes from responses to an open-ended question. RESULTS: One-third of participants reported misgendering (that is, had been addressed by their incorrect name and pronouns in the dental setting). Although refusal of oral health care was rare in this sample of TGNB participants, more than one-half felt that their usual source of oral health care was not equipped to provide gender-appropriate care. Participants' avoidance due to gender identity was significantly associated with measures of self-reported suboptimal oral health. Common themes related to participants' oral health care experiences included gender insensitivity, awkward interactions, avoidance of care, and lack of gender-affirming providers. CONCLUSIONS: Discrepancies between TGNB patients' expectations and actual experiences suggest that their needs are often unmet in the dental setting, possibly contributing to gender identity-associated dental avoidance and oral health disparities. PRACTICAL IMPLICATIONS: Although these results need to be verified in larger and more diverse samples, they provide actionable information for improvement to this population's oral health and management.


Subject(s)
Transgender Persons , Humans , Female , Male , Gender Identity , Oral Health , Surveys and Questionnaires , Self Report
7.
JAMA Netw Open ; 5(7): e2224236, 2022 07 01.
Article in English | MEDLINE | ID: mdl-35900759

ABSTRACT

Importance: Role misidentification of resident physicians occurs frequently and is associated with decreased well-being. Objective: To evaluate the role misidentification and burnout rates among resident physicians after disbursement of role identity badges. Design, Setting, and Participants: This quality improvement study was conducted during the 2018 to 2019 academic year. Residents in 13 surgical and nonsurgical residency programs at 2 large academic medical centers (Massachusetts General Hospital and Brigham and Women's Hospital) were eligible to receive the intervention and complete 2 surveys (before and after the intervention). Data were analyzed from December 4, 2021, to February 7, 2022. Intervention: Role identity badges that displayed "Doctor" and could be attached to mandatory hospital identification badges were distributed to residents in August 2018 at Massachusetts General Hospital and in March 2019 at Brigham and Women's Hospital. Residents were not required to wear the badge. Main Outcomes and Measures: The primary outcome was self-reported role misidentification at least once per week during the previous 3 months. The change from pre- to post-badge distribution surveys was assessed with McNemar's test. A secondary outcome was any reduction in the frequency of role misidentification after badge distribution. Multivariable logistic regression was used to assess the association between reduced frequency of role misidentification and demographic characteristics. A separate analysis evaluated the change in self-reported burnout after badge distribution. Results: A total of 161 residents (39%) completed both surveys, which included 79 men (49%), 72 (45%) who were younger than 30 years, 20 (12%) with an underrepresented in medicine status, and 74 (46%) who were in surgical specialties. The proportion of residents reporting at least weekly role misidentification decreased from 50% (n = 81 of 161) before badge distribution to 35% (n = 57 of 161; P < .001) after badge distribution. Female residents were more likely to report reduced role misidentification frequency after receiving a badge compared with male residents (adjusted odds ratio, 2.32; 95% CI, 1.18-4.63; P = .01). Residents who wore badges demonstrated no change in burnout before vs after badge distribution (39% [n = 33 of 85] vs 34% [29 of 85]; P = .87) compared with an increase among residents who did not wear a badge (27% [n = 15 of 55] vs 45% [n = 25 of 55]; P = .03). Conclusions and Relevance: This study found that the distribution of role identity badges was associated with less frequent perception of role misidentification among resident physicians across specialties, particularly among female residents. Role identity badges were a well-received, low-cost intervention that could be used to reduce role misidentification and address burnout among residents.


Subject(s)
Burnout, Professional , Internship and Residency , Medicine , Physicians , Burnout, Professional/epidemiology , Female , Humans , Male , Surveys and Questionnaires
8.
Ann Surg ; 276(2): 404-408, 2022 08 01.
Article in English | MEDLINE | ID: mdl-33196486

ABSTRACT

OBJECTIVE: This cross-sectional study characterized associations between sex, role misidentification, and burnout among surgical and nonsurgical residents. SUMMARY BACKGROUND DATA: Limited evidence suggests that female resident physicians are more likely to be misidentified as nonphysician team members, with potential negative implications for wellbeing. The prevalence and impact of role misidentification on the trainee experience in surgical as compared to nonsurgical specialties is unknown. METHODS: An anonymous electronic survey was distributed to fourteen different residency programs at 2 academic medical centers in August 2018. The survey included questions about demographics, symptoms of burnout, the frequency of misidentification as another member of the care team, and the effect of misidentification on respondents' well-being. Results: Two-hundred sixty out of 419 (62.1% response rate) resident physicians completed the survey, of whom 184 (77.3%) reported being misidentified as a nonphysician at least weekly. Female sex was associated with a significantly increased odds of being misidentified at least weekly (adjusted OR 23.7, 95% CI 10.9-51.5; P < 0.001), as was training in a surgical program (adjusted OR 3.7, 95% CI 1.7-8.0; P = 0.001). Frequent role misidentification was associated with burnout (OR 2.6, 95% CI 1.2-5.5; P = 0.01). In free-text responses, residents reported that being misidentified invoked a sense of not belonging, caused emotional exhaustion, and interfered with patient communication. CONCLUSIONS: Role misidentification is more prevalent among female residents and surgical residents, compared to male residents and nonsurgical residents, respectively. Physician role misidentification is associated with burnout and has negative implications for resident wellbeing; interventions to reduce role misidentification are needed.


Subject(s)
Burnout, Professional , Internship and Residency , Physicians, Women , Burnout, Professional/psychology , Cross-Sectional Studies , Female , Humans , Male , Surveys and Questionnaires
9.
J Endocr Soc ; 7(2): bvac190, 2022 Dec 15.
Article in English | MEDLINE | ID: mdl-36632209

ABSTRACT

Context: Blood pressure and plasma catecholamines normally decline during sleep and rapidly increase in early morning. This is blunted in adults with type 2 diabetes (T2D). Objective: We hypothesize that increased sympatho-adrenal activity during sleep differentiates youth with T2D from nondiabetic obese youth and lean youth. Methods: Fasting spot morning and 24-hour urines were collected in obese adolescents with and without T2D, and normal-weight controls. Fractionated free urine catecholamines (epinephrine, norepinephrine, and dopamine) were measured, and the ratio of fasting spot morning to 24-hour catecholamines was calculated. Results: Urinary 24-hour catecholamine levels were comparable across the 3 groups. Fasting morning epinephrine and the ratio of fasting morning/24-hour epinephrine were higher in youth with T2D (P = 0.004 and P = 0.035, respectively). In males, the ratio of fasting morning/24-hour epinephrine was also higher in youth with T2D (P = 0.005). In females, fasting morning norepinephrine and the ratio of fasting morning/24-hour dopamine were lower in obese youth with and without T2D (P = 0.013 and P = 0.005, respectively) compared with lean youth. Systolic blood pressure was higher in diabetic participants than other groups; males trended higher than females. Conclusion: Circadian rhythm in catecholamines is disrupted in youth-onset T2D, with a blunted overnight fall in urinary epinephrine in males. Conversely, fasting morning norepinephrine and dopamine levels were lower in obese females with or without T2D. Higher nocturnal catecholamines in males with T2D might associate with, or predispose to, hypertension and cardiovascular complications. Lower catecholamine excretion in females with obesity might serve an adaptive, protective role.

11.
Nat Biotechnol ; 39(6): 691-696, 2021 06.
Article in English | MEDLINE | ID: mdl-33574611

ABSTRACT

Modern experimental technologies can assay large numbers of biological sequences, but engineered protein libraries rarely exceed the sequence diversity of natural protein families. Machine learning (ML) models trained directly on experimental data without biophysical modeling provide one route to accessing the full potential diversity of engineered proteins. Here we apply deep learning to design highly diverse adeno-associated virus 2 (AAV2) capsid protein variants that remain viable for packaging of a DNA payload. Focusing on a 28-amino acid segment, we generated 201,426 variants of the AAV2 wild-type (WT) sequence yielding 110,689 viable engineered capsids, 57,348 of which surpass the average diversity of natural AAV serotype sequences, with 12-29 mutations across this region. Even when trained on limited data, deep neural network models accurately predict capsid viability across diverse variants. This approach unlocks vast areas of functional but previously unreachable sequence space, with many potential applications for the generation of improved viral vectors and protein therapeutics.


Subject(s)
Capsid Proteins/genetics , Dependovirus/genetics , Machine Learning , Genetic Vectors , HeLa Cells , Humans
12.
OTJR (Thorofare N J) ; 41(1): 6-14, 2021 01.
Article in English | MEDLINE | ID: mdl-32578506

ABSTRACT

This study examined associations between chores engagement, self-management, and transition readiness in youth with chronic conditions. Youths with various chronic conditions attending a therapeutic camp, and their parents participated. Responses of 165 campers and their parents were analyzed (mean camper age 12.3 ± 2.6 years, 47.9% males, 79.4% White). The most common diagnoses were diabetes, spina bifida, cerebral palsy, and sickle cell anemia. Youth who completed chores manifested higher overall health care transition readiness (ß^ = 5.17, p = .026) and better communication with providers (ß^ = 2.98, p = .006) than youth who completed no chores. Higher chores frequency was not more predictive of higher health care transition readiness scores above and beyond the effects of having chores at all. These results suggest that responsible health care behaviors are related to similar actions in other areas of life. Assignment of chores may promote self-management and health care transition readiness in youth with chronic conditions.


Subject(s)
Self-Management , Transition to Adult Care , Adolescent , Child , Chronic Disease , Female , Humans , Male , Parents , Patient Transfer
15.
Hum Mutat ; 40(11): 2007-2020, 2019 11.
Article in English | MEDLINE | ID: mdl-31180157

ABSTRACT

Lysosomal acid lipase (LAL) deficiency is an autosomal recessive disorder caused by LIPA gene mutations that disrupt LAL activity. We performed in vitro functional testing of 149 LIPA variants to increase the understanding of the variant effects on LAL deficiency and to improve disease prevalence estimates. Chosen variants had been reported in literature or population databases. Functional testing was done by plasmid transient transfection and LAL activity assessment. We assembled a set of 165 published LAL deficient patient genotypes to evaluate this assay's effectiveness to recapitulate genotype/phenotype relationships. Rapidly progressive LAL deficient patients showed negligible enzymatic activity (<1%), whereas patients with childhood/adult LAL deficiency typically have 1-7% average activity. We benchmarked six in silico variant effect prediction algorithms with these functional data. PolyPhen-2 was shown to have a superior area under the receiver operating curve performance. We used functional data along with Genome Aggregation Database (gnomAD) allele frequencies to estimate LAL deficiency birth prevalence, yielding a range of 3.45-5.97 cases per million births in European-ancestry populations. The low estimate only considers functionally assayed variants in gnomAD. The high estimate computes allele frequencies for variants absent in gnomAD, and uses in silico scores for unassayed variants. Prevalence estimates are lower than previously published, underscoring LAL deficiency's rarity.


Subject(s)
Genetic Predisposition to Disease , Genetic Variation , Models, Genetic , Sterol Esterase/genetics , Wolman Disease/epidemiology , Wolman Disease/genetics , Algorithms , Gene Expression , Genetic Association Studies , Genotype , Humans , Mutation , Phenotype , Prevalence , ROC Curve , Wolman Disease
16.
Endocrinol Diabetes Metab ; 2(2): e00055, 2019 Apr.
Article in English | MEDLINE | ID: mdl-31008363

ABSTRACT

OBJECTIVE: Recently, our team transitioned to an outpatient diabetes education model for patients with newly diagnosed insulin-dependent diabetes mellitus (IDDM) after concerns arose regarding inconsistent education provided in the hospital, as well as additional emotional stress attributed to hospitalization. To optimize this model, an improvement initiative was implemented to redesign the outpatient care processes, refine patient education content and identify ideal educational strategies. Specific aims were to (a) achieve family self-management, (b) reduce stress and (c) ensure family and provider satisfaction with the outpatient pathway. RESEARCH DESIGN AND METHODS: Using a multidisciplinary team and formal quality improvement (QI) methods, we redesigned content and format of the pathway based on results from key measures and Plan-Do-Study-Act (PDSA) cycles. Primary outcome measures included self-efficacy, stress and satisfaction. RESULTS: We achieved our goal self-management skills, while maintaining high satisfaction for patients and providers throughout the implementation and refinement of the pathway. Key pathway components include refined education content, interactive educational tools and close collaboration with social work. Multiple PDSA cycles and pathway modifications were completed, including early social work involvement and simplification of education resources; however, we found modifying the stress experienced by parents to be a challenge. The majority of the stress relates to factors that are difficult to modify, specifically emotional burden and interpersonal distress, and is rarely attributed to regimen- or physician-related distress. CONCLUSION: During the transition to an outpatient pathway, we achieved our satisfaction and self-management goals but were unsuccessful in achieving our goals for minimizing stress associated with a new diagnosis of a chronic illness.

17.
JAMA Intern Med ; 179(3): 374-380, 2019 03 01.
Article in English | MEDLINE | ID: mdl-30640379

ABSTRACT

Importance: The US Department of Health and Human Services (HHS) has proposed to reform drug pricing in Medicare Part B, which primarily covers physician-administered drugs and biologic agents. One HHS proposal would shift coverage of certain drugs from Medicare Part B to Part D, which is administered by private prescription drug plans. Objective: To estimate the association of changes of a shift in Medicare Part B to Part D with total drug spending and patient cost-sharing. Design, Setting, and Participants: Retrospective drug cohort study of the 75 brand-name drugs associated with the highest Part B expenditures among fee-for-service Medicare beneficiaries in 2016. Main Outcomes and Measures: Estimated total Medicare spending in Part B and Part D; annual out-of-pocket costs in Part B and under the standard 2018 Part D benefit; and proportion of drugs in Part D's protected drug classes (immunosuppressants for prophylaxis of organ transplant rejection, antidepressants, antipsychotics, anticonvulsants, antiretrovirals, and antineoplastics). Results: At 2018 prices, total Medicare Part B spending for the 75 brand-name drugs with the highest Part B expenditures was estimated to be $21.6 billion annually. Under the proposed policy, total Part D drug spending for these drugs was estimated to range between $17.6 billion and $20.1 billion after rebates, corresponding to a 6.9% to 18.3% decrease in drug spending in Part D compared with Part B. Of the 75 drugs studied, 33 (44.0%) drugs, accounting for $9.5 billion (43.9%) in Part B spending, were in protected Part D classes where plans must cover essentially all drugs. For 67 drugs with available information, the prices for 65 (97.0%) were a median of 45.8% to 59.7% lower in comparator high-income countries than Part B drug prices. Median patient cost-sharing in Part B for all 75 brand-name drugs was $4683 (interquartile range [IQR], $1069-$9282) per year. Shifting Part B drugs to the 2018 standard Part D benefit was projected to decrease out-of-pocket costs by a median of $860 (IQR, -$3884 to $496) among Medicare beneficiaries without Medicaid or Part B supplemental insurance (Medigap). For beneficiaries who would qualify for the low-income subsidy program in Part D, cost-sharing would be lower in Part D than in Part B for all drugs. For beneficiaries with Medigap insurance, estimated Part D out-of-pocket costs exceeded average Medigap premium costs by a median of $1460 for those with Part D coverage and by a median of $1952 for those without Part D coverage. Conclusions and Relevance: Although the HHS proposal to shift certain drugs from Medicare Part B to Part D may reduce total drug spending, it may increase out-of-pocket costs for some Medicare beneficiaries, including those with Medicare supplement insurance. The Department of Health and Human Services should ensure that the proposed reforms benefit both patients and payers.


Subject(s)
Cost Sharing , Medicare Part B/economics , Medicare Part D/economics , Prescription Drugs/economics , Aged , Female , Humans , Male , Retrospective Studies , United States
18.
J Pediatr ; 203: 361-370.e1, 2018 12.
Article in English | MEDLINE | ID: mdl-30201183

ABSTRACT

OBJECTIVE: To evaluate the roles of key individual, family, and illness characteristics on the levels of and gains in longitudinal healthcare transition (HCT) readiness in the pediatric setting and/or self-management skills (SMS) in the adult-focused setting, we used a large dataset with longitudinal measurements from 2006 to 2015. STUDY DESIGN: This longitudinal observational study followed 566 adolescents and young adults with chronic conditions at University of North Carolina Hospitals. TRxANSITION Index measurements, which represent learning outcomes rather than health outcomes, were collected multiple times per patient and analyzed using a novel application of an education-based approach. RESULTS: Levels of and gains in HCT/SMS scores increased with age (P < .001) with smaller increases at older ages. Mastery of skills varied by age with self-management achieved after 20 years of age. Scores varied positively by father's education and negatively by mother's education and duration of diagnosis. Gains in scores further varied positively with private insurance and negatively with mother's education and duration of diagnosis. CONCLUSIONS: We found diminishing positive increases in HCT/SMS scores as patients become older and smaller levels of and gains in readiness among younger patients with more educated mothers. Risk factors for absolute level of HCT/SMS readiness and inadequate longitudinal gains are not always the same, which motivates a deeper understanding of this dynamic process through additional research. This information can guide providers to focus HCT/SMS preparation efforts on skills mastered at particular ages and to identify patients at risk for inadequate development of HCT/SMS skills.


Subject(s)
Chronic Disease/therapy , Health Knowledge, Attitudes, Practice , Self Care/methods , Self-Management , Transition to Adult Care , Adolescent , Adult , Age Factors , Child , Delivery of Health Care , Educational Status , Female , Hospitals , Humans , Longitudinal Studies , Male , North Carolina , Social Class , Young Adult
20.
Obes Med ; 9: 21-31, 2018 Mar.
Article in English | MEDLINE | ID: mdl-29984330

ABSTRACT

AIMS: No current clinical guidelines focus on weight management in youth with type 1 diabetes mellitus (T1DM). Our aim was to characterize the patient-perceived experience and barriers to weight management in youth with T1DM. METHODS: Participants were recruited from the University of North Carolina (n = 16, 56% female, 60% White, 50% insulin pump users, mean age 14.8 years, mean HbA1c 8.5% (69 mmol/mol)) and the University of Colorado (n = 18, 50% female, 80% white, 53% pump users, mean age 15.3 years, mean HbA1c 9.3% (78 mmol/mol)). Focus groups were stratified by sex and weight status (BMI cutoff = 25). Discussions were guided by a standardized set of questions, audio-taped, transcribed, and analyzed thematically using inductive qualitative methods. RESULTS: Youth with T1DM expressed four interrelated themes of antagonism between type 1 diabetes and weight management: dysregulated appetite, disruption of blood glucose levels associated with changing diet/exercise, hypoglycemia as a barrier to weight loss, and the overwhelming nature of dual management of weight and glycemic control, and two interrelated themes of synergism: improvement in shared, underlying heath behaviors and exercise as a tool for weight and glycemic control. Variation in emphasis of specific thematic elements was greatest across sex. Youth identified five major components of a weight management program for T1DM: intensified glucose management, healthy diet with known carbohydrate content, exercise, individualization and flexibility, and psychosocial and peer support. CONCLUSIONS: There is critical need for personalized, T1DM-specific weight recommendations to overcome disease-specific barriers to weight management in the context of T1DM.

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