R01NR020606

Self-management for youth living with sickle cell disease (SMYLS) - Project Summary/Abstract

Sickle cell disease (SCD) is a chronic condition that affects every organ system and requires lifelong complicated treatment regimens. Adolescents and young adults (AYA) with SCD experience remarkable increases in negative outcomes (e.g., morbidity, mortality, complications, acute care utilization) following transition from pediatric to adult care. To mitigate negative outcomes, it is critical that AYA with SCD develop effective self-management behaviors prior to transition to adult care.

However, AYA with SCD face challenges to self-management behavior development that are compounded by the lack of easily accessible self-management tools. Our long-term objectives are to develop a comprehensive model of self-management for AYA with SCD that incorporates mechanisms of self-management behavior development and influencing modifiable and fixed factors, along with a clinical model of care that addresses mechanisms and influencing factors and provides AYA and providers with resources to improve self-management behaviors.

This R01 application to the National Institute of Nursing Research (NINR), Self-Management for Youth Living with Sickle Cell Disease (SMYLS), will advance us towards this objective by supporting: 1) effectiveness testing of our existing, theoretically founded, mHealth self-management intervention and 2) assessment of the role of patient activation on self-management behavior development.

In Aim 1, we will examine the pre-post intervention differences in engagement in self-management processes, self-management behaviors, health and quality of life outcomes, and the relationships among patient activation and outcomes. In Aim 2, we will determine barriers and facilitators to adoption of the self-management intervention to inform future implementation initiatives. In the exploratory aim, we will identify socioenvironmental and psychosocial modifiable and fixed variables that influence outcomes.

Findings from this study will determine the effectiveness of a theoretically founded, mHealth self-management intervention for AYA with SCD, identify the role of patient activation in self-management for AYA with SCD, and characterize influences on self-management behaviors. In addition, if the intervention is proven effective, findings on barriers and facilitators to intervention adoption in this study can be applied to the next step in this research trajectory, wide-scale implementation of the intervention.

Our objectives are consistent with the 2022 – 2026 National Institute of Nursing Research draft strategic plan to reduce disease severity, symptoms, and progression with a focus on reducing health disparities by targeting improved self-management behaviors pre-transition to adult care to mitigate subsequent negative outcomes in AYA with SCD, a population that has been underserved in research and healthcare advancements.

The Medical University Of South Carolina

NURSES UNDERSTAND THAT IMPROVING HEALTH AND WELL-BEING MEANS ADDRESSING PEOPLE'S NEEDS IN MULTIPLE SETTINGS, CONTEXTS, AND OVER THE WHOLE LIFE COURSE. SCIENCE SUPPORTED BY THE NATIONAL INSTITUTE OF NURSING RESEARCH (NINR) USES THIS HOLISTIC PERSPECTIVE TO IMPROVE INDIVIDUAL AND POPULATION HEALTH AND ADVANCE HEALTH EQUITY. NINR-SUPPORTED RESEARCH PROMOTES HEALTH AND WELL-BEING BY ADDRESSING NEEDS AT MULTIPLE LEVELS INDIVIDUAL, FAMILY, COMMUNITY, AND SOCIETAL LEVELS AND DEVELOPING TREATMENT AND PREVENTION STRATEGIES THAT ARE RESPONSIVE TO THE REALITY OF PEOPLE'S LIVES. NURSES KNOW PEOPLE, AND PEOPLE TRUST NURSES. PATIENT AND FAMILIES INTERACT WITH NURSES MORE THAN ANY OTHER CLINICIANS. NURSING SCIENCE USES THIS SPECIAL RELATIONSHIP TO BETTER UNDERSTAND PATIENTS, FAMILIES, AND COMMUNITIES AND THE MANY FACTORS THAT INFLUENCE THEIR HEALTH. NURSING SCIENCE SUPPORTED BY NINR USES THIS KNOWLEDGE TO DEVELOP STRATEGIES FOR IMPROVING HEALTH AND WELLNESS ACROSS POPULATIONS, HEALTH CARE SETTINGS, AND THE LIFESPAN, WITH AN EMPHASIS ON ACHIEVING HEALTH EQUITY. NINR-SUPPORTED SCIENTISTS HAVE DEVELOPED INTERVENTIONS FOR: SUPPORTING PARENTS OF PREMATURE INFANTS, PROMOTING HIV PREVENTION IN UNDERSERVED POPULATIONS, IMPROVING TRANSITIONAL CARE LEADING TO BETTER OUTCOMES AND COST-SAVINGS, AND HELPING INNER-CITY CHILDREN MANAGE ASTHMA. NURSING SCIENCE TRANSCENDS THE BOUNDARIES OF DISEASE AND RESEARCH DISCIPLINES TO BETTER UNDERSTAND THE EXPERIENCES OF INDIVIDUALS AND FAMILIES LIVING WITH ILLNESS AND TO DEVELOP PERSONALIZED APPROACHES THAT MAXIMIZE HEALTH AND WELL-BEING FOR INDIVIDUALS AT ALL STAGES OF LIFE, ACROSS DIVERSE POPULATIONS AND SETTINGS. NINR-SUPPORTED SCIENCE USES NURSING SCIENCE'S UNIQUE, PATIENT AND COMMUNITY-FOCUSED PERSPECTIVE AND WIDE REACH ACROSS CLINICAL AND COMMUNITY SETTINGS TO ADVANCE OUR UNDERSTANDING OF THE SOCIAL DETERMINANTS OF HEALTH: THOSE FACTORS THAT ARE AT THE ROOT OF THE INEQUITIES THAT WE SEE, SUCH AS FOOD INSECURITY AND ACCESS TO HEALTHCARE. NINR RESEARCH EFFORTS IN WELLNESS INVESTIGATE THE KEY BIOLOGICAL, BEHAVIORAL, AND SOCIAL FACTORS THAT PROMOTE LONG-TERM HEALTH AND HEALTHY BEHAVIORS AND PREVENT THE DEVELOPMENT OF ILLNESS ACROSS HEALTH CONDITIONS, SETTINGS, AND THE LIFESPAN. RESEARCH IN WELLNESS IS ALSO FOCUSED ON DEVELOPING AND TESTING CULTURALLY APPROPRIATE INTERVENTIONS TO PROMOTE HEALTH AND PREVENT ILLNESS IN MINORITY AND UNDERSERVED GROUPS. NINR ALSO SUPPORTS SCIENCE TO ASSIST INDIVIDUALS, FAMILIES, AND HEALTH CARE PROFESSIONALS IN MANAGING ADVANCED, SERIOUS ILLNESS, AND PLANNING FOR END-OF-LIFE DECISIONS. IN ADDITION, NINR PROMOTES TECHNOLOGICAL ADVANCEMENTS THAT ADDRESS A RANGE OF HEALTH CARE CHALLENGES AND FACILITATE THE DELIVERY OF REAL-TIME PERSONALIZED INFORMATION TO INDIVIDUALS AND FAMILIES, HEALTH CARE PROVIDERS, AND COMMUNITIES. FINALLY, NINR HAS A LONGSTANDING AND CONTINUING COMMITMENT TO DEVELOPING THE NEXT GENERATION OF NURSE SCIENTISTS: THOSE INDIVIDUALS AND TEAM MEMBERS WHO WILL CARRY THE FIELD OF NURSING SCIENCE INTO THE FUTURE. IN ORDER TO PREPARE AN INNOVATIVE, DIVERSE, AND TALENTED NEXT GENERATION OF NURSE SCIENTISTS, NINR SUPPORTS A VARIETY OF TRAINING OPPORTUNITIES FOR SCIENTISTS AND TRAINEES AT ALL CAREER LEVELS, PARTICULARLY THOSE AT AN EARLY CAREER STAGE WHO ARE SO CRITICAL TO SUSTAINING THE FUTURE OF INNOVATIVE RESEARCH AND HIGH QUALITY HEALTH CARE.

93.361 - Nursing Research

National Institute of Nursing Research (NINR) [HHS - NIH]

Charleston, South Carolina 29425 United States

Single Zip Code

Patient Activation for Self-Management of Chronic Conditions (R01 Clinical Trial Optional) (PAR-19-381)

Amendment Since initial award the total obligations have increased 179% from $562,412 to $1,570,500.