Ida Griesemer1, Elizabeth Moore1, Cynthia Khan2, Myra Roche3, Gail Henderson4, Christine Rini5. 1. Department of Health Behavior, University of North Carolina at Chapel Hill. 2. Thurston Arthritis Research Center, University of North Carolina at Chapel Hill. 3. Department of Pediatrics, University of North Carolina at Chapel Hill. 4. Department of Social Medicine, University of North Carolina at Chapel Hill. 5. UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill.
Abstract
OBJECTIVE: Psychological adaptation is an important but understudied outcome among patients who undergo DNA evaluation to identify a cause of an unexplained health condition. This longitudinal study examines the relationship between the degree to which participants' hopes for diagnostic genomic sequencing were fulfilled and their psychological adaptation to their sequencing results over time. METHOD: Secondary analyses were conducted on data from a subset of adult participants from the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing study with physical health conditions of suspected genetic etiology (such as neurological disorders or cancer; n = 192). Hope fulfillment and type of hope (hopes related to personal-family health implications vs. hoping to help others-advance science) were assessed as predictors of change in psychological adaptation (Psychological Adaptation Scale) and 4 subscales (coping efficacy, self-esteem, social integration, spiritual-existential well-being), from 2 weeks to 6 months after disclosure of genomic sequencing results. RESULTS: Controlling for covariates, degree of hope fulfillment was associated with increased general psychological adaptation (β = .14, p = .02), social integration (β = .17, p = .01), and spiritual-existential well-being (β = .15, p = .02). Type of hope did not modify effects of degree of hope fulfillment on adaptation outcomes. CONCLUSIONS: The degree to which patients' genomic sequencing-related hopes are fulfilled may be an important driver of long-term psychological adaptation after genomic sequencing. Evaluating the degree to which patients' hopes are fulfilled may allow clinicians to gain insight into the likely trajectory for patient adaptation after learning their results from genomic sequencing. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
OBJECTIVE: Psychological adaptation is an important but understudied outcome among patients who undergo DNA evaluation to identify a cause of an unexplained health condition. This longitudinal study examines the relationship between the degree to which participants' hopes for diagnostic genomic sequencing were fulfilled and their psychological adaptation to their sequencing results over time. METHOD: Secondary analyses were conducted on data from a subset of adult participants from the North Carolina Clinical Genomic Evaluation by Next-Generation Exome Sequencing study with physical health conditions of suspected genetic etiology (such as neurological disorders or cancer; n = 192). Hope fulfillment and type of hope (hopes related to personal-family health implications vs. hoping to help others-advance science) were assessed as predictors of change in psychological adaptation (Psychological Adaptation Scale) and 4 subscales (coping efficacy, self-esteem, social integration, spiritual-existential well-being), from 2 weeks to 6 months after disclosure of genomic sequencing results. RESULTS: Controlling for covariates, degree of hope fulfillment was associated with increased general psychological adaptation (β = .14, p = .02), social integration (β = .17, p = .01), and spiritual-existential well-being (β = .15, p = .02). Type of hope did not modify effects of degree of hope fulfillment on adaptation outcomes. CONCLUSIONS: The degree to which patients' genomic sequencing-related hopes are fulfilled may be an important driver of long-term psychological adaptation after genomic sequencing. Evaluating the degree to which patients' hopes are fulfilled may allow clinicians to gain insight into the likely trajectory for patient adaptation after learning their results from genomic sequencing. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
Authors: Barbara A Bernhardt; Myra I Roche; Denise L Perry; Sarah R Scollon; Ashley N Tomlinson; Debra Skinner Journal: Am J Med Genet A Date: 2015-07-21 Impact factor: 2.802
Authors: Jonathan S Berg; Jeannette T Bensen; Brooke S Staley; Laura V Milko; Margaret Waltz; Ida Griesemer; Lonna Mollison; Tracey L Grant; Laura Farnan; Myra Roche; Angelo Navas; Alexandra Lightfoot; Ann Katherine M Foreman; Julianne M O'Daniel; Suzanne C O'Neill; Feng-Chang Lin; Tamara S Roman; Alicia Brandt; Bradford C Powell; Christine Rini Journal: Trials Date: 2021-06-14 Impact factor: 2.279