Publications by authors named "Suzanne Johnson"

Article Synopsis
  • A study examined the symptom burden of multiple myeloma (MM) patients using a symptom monitoring app, focusing on their treatment experiences based on the line of therapy (LOT).
  • The research involved 156 patients, comparing those on their 4th LOT or higher (heavily pretreated) with those on fewer LOTs, revealing that common severe symptoms included fatigue, muscle pain, and numbness/tingling, with heavier symptom burden in the heavily pretreated group.
  • The findings indicate a need for better symptom management interventions for all patients but highlight a pressing need for those who are heavily pretreated due to their significantly higher symptom burden and bother.
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The goal of the TEDDY (The Environmental Determinants of Diabetes in the Young) study is to elucidate factors leading to the initiation of islet autoimmunity (first primary outcome) and those related to progression to type 1 diabetes mellitus (T1DM; second primary outcome). This Review outlines the key findings so far, particularly related to the first primary outcome. The background, history and organization of the study are discussed.

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Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programs are being increasingly emphasized. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb+) children and adults who are at risk for (confirmed single IAb+) or living with (multiple IAb+) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in nonspecialized settings.

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Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programmes are being increasingly emphasised. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb) children and adults who are at risk of (confirmed single IAb) or living with (multiple IAb) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in non-specialised settings.

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Article Synopsis
  • - The TEDDY Study aims to understand the environmental factors contributing to type 1 diabetes in children with a genetic predisposition, emphasizing the importance of keeping participants engaged throughout the 15-year research period for reliable results.
  • - Retention strategies for the TEDDY Study were categorized into four main domains: barrier reduction, community building, follow-up reminders, and tracing, alongside unique approaches specifically tailored for the study.
  • - Effective participant retention planning from the outset, along with ongoing engagement strategies for both children and their parents, is critical for addressing challenges and ensuring a successful observational study.
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Objective: To improve the clinical utility of the Maintain High Blood Glucose subscale of the Hypoglycemia Fear Surveys (HFS) by identifying clinically meaningful cut points associated with glycemic outcomes.

Methods: Youth (N = 994; 13.96 ± 2.

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Background: Compliance with a study protocol is central to meeting its research goals. In longitudinal research studies, data loss due to missed visits limit statistical power and introduce bias. The Environmental Determinants of Diabetes in the Young (TEDDY) study is a longitudinal multinational (US, Finland, Germany, and Sweden) investigation of children at risk for type 1 diabetes (T1D) that seeks to identify the environmental triggers of islet autoimmunity and T1D.

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Objective: To develop a reliable and valid short form of the State Anxiety Subscale of the State-Trait Anxiety Inventory for Children (STAI-CH) in the Environmental Determinants of Diabetes in the Young (TEDDY) study.

Methods: A Development Sample of 842 10-year-old TEDDY children completed the STAI-CH State Subscale about their type 1 diabetes (T1D) risk. The best 6 items (three anxiety-present and three anxiety-absent) for use in a short form (SAI-CH-6) were identified via item-total correlations.

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Objective: This study investigated physical activity and its association with the development of islet autoimmunity and type 1 diabetes in genetically at-risk children aged 5-15 years.

Research Design And Methods: As part of the longitudinal Environmental Determinants of Diabetes in the Young (TEDDY) study, annual assessment of activity using accelerometry was conducted from age 5 years. Time-to-event analyses using Cox proportional hazard models were used to assess the association between time spent in moderate to vigorous physical activity per day and the appearance of one or several autoantibodies and progression to type 1 diabetes in three risk groups: 1) 3,869 islet autoantibody (IA)-negative children, of whom 157 became single IA positive; 2) 302 single IA-positive children, of whom 73 became multiple IA positive; and 3) 294 multiple IA-positive children, of whom 148 developed type 1 diabetes.

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The purpose of this study was to evaluate the impact of an ongoing multidisciplinary childhood obesity intervention, within a federally qualified health center, on mental health and physical activity outcomes with Latino children from an agricultural community. The program was evaluated using attendance and parent-reports of child mental health and physical activity levels. Paired t-tests and chi squared tests were used to examine pre-post change in outcomes.

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Background: Individuals with advanced HIV experience high mortality, especially before and during the first months of antiretroviral therapy (ART). We aimed to identify factors, measurable in routine, primary health clinic-based services, associated with the greatest risk of poor outcome.

Methods: We included all individuals enrolled in the standard-of-care arm of a cluster-randomized trial (TB Fast Track); adults attending participating health clinics with CD4 ≤150 cells/µL and no recent ART were eligible.

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Objective: To examine the association of physical activity (PA), measured by accelerometry, to hemoglobin AIC (HbA1c) and oral glucose tolerance test (OGTT) outcomes in children who were multiple persistent confirmed autoantibody positive for type 1 diabetes (T1D).

Methods: The Environmental Determinants of Diabetes in the Young (TEDDY) multinational study followed children from birth. Children ≥3 years of age who were multiple persistent confirmed autoantibody positive were monitored by OGTTs every 6 months.

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Fear of hypoglycemia (FOH) is anxiety or extreme worry about having a low blood glucose and its consequences. FOH is common in individuals with type 1 diabetes (T1D) of all ages, as well as their caregivers, and can lead to inappropriate T1D self-management and suboptimal health outcomes. Despite its prevalence and serious health consequences, there has been very little attention focused on developing interventions to reduce FOH and its associated maladaptive T1D management behaviors.

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The purpose of this study was to evaluate the feasibility of a family childhood obesity program for Latino agricultural families within a community health center. The program included several treatment components to address culturally relevant topics and other factors, such as poverty, that affect agricultural workers. The program was evaluated using attendance, height, and weight data.

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Background: Participants' study satisfaction is important for both compliance with study protocols and retention, but research on parent study satisfaction is rare. This study sought to identify factors associated with parent study satisfaction in The Environmental Determinants of Diabetes in the Young (TEDDY) study, a longitudinal, multinational (US, Finland, Germany, Sweden) study of children at risk for type 1 diabetes. The role of staff consistency to parent study satisfaction was a particular focus.

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For the Syilx Okanagan Nation, food sovereignty is foundational to ensuring their cultural food security and health. Salmon being a central Syilx food, the Nation has worked relentlessly since the 1990s to reintroduce Okanagan sockeye salmon into their traditional territory. This study describes the reach of this initiative and assesses its impact on Syilx households' income-related and cultural food security status.

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Tuberculosis (TB) remains the leading cause of hospitalization and in-hospital mortality in HIV-positive adults. Using data from hospital and clinic files, research databases, and autopsy, we describe causes and outcomes of admissions, and assess investigations for TB among adults with advanced HIV who were hospitalized after enrollment into the TB Fast Track trial in South Africa (2013-2015). A total of 251 adults [median CD4 count, 37.

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Background: For the Syilx Okanagan Nation in Canada, salmon has vital nutritional, cultural, and spiritual significance. Yet, the Okanagan Sockeye salmon population came to near extinction, resulting in a drastic decline in salmon consumption from high historical levels. Thus, restoring and protecting salmon is crucial to Syilx well-being and way of life.

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Introduction: Facility-based HIV testing services (HTS) have been less acceptable and accessible by adolescents, men and key populations in South Africa. Community-based HIV counselling and testing (CBCT) modalities, including mobile unit and home-based testing, have been proposed to decrease barriers to HIV testing uptake. CBCT modalities and approaches may be differentially acceptable to men and women based on age.

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Objective: We examined parental diabetes monitoring behaviors in a cohort of children at increased genetic risk for type 1 diabetes. We hypothesized that being informed of a positive islet autoantibody (IA) would increase monitoring behaviors.

Research Design And Methods: The Environmental Determinants of Diabetes in the Young (TEDDY) study follows 8676 children with high-risk human leucocyte antigen-DQ genotypes from birth to age 15, including general population (GP) children and those with a first-degree relative (FDR) with diabetes.

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Individuals with type 1 diabetes (T1D) must engage in a variety of complex and burdensome self-management behaviors daily to maintain near normal blood glucose levels and prevent complications. There is a need for interventions to improve use of sophisticated diabetes technologies, such as insulin pumps, during adolescence - a very high-risk developmental period for individuals with T1D. All diabetes devices, including insulin pumps, store large amounts of behavioral data that can be downloaded and analyzed to evaluate adherence to recommended T1D self-management behaviors.

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