Interventions to improve patient education regarding multifactorial genetic conditions: a systematic review

Am J Med Genet A. 2009 Feb 15;149A(4):819-30. doi: 10.1002/ajmg.a.32723.

Abstract

The careful education of patients with complex genetic disease is essential. However, healthcare providers often have limited time to spend providing thorough genetic education. Furthermore, the number of healthcare professionals possessing strong genetics training may be inadequate to meet increasing patient demands. Due to such constraints, several interventions have been investigated over the past decade to identify potential resources for the facilitation of this specific type of patient education. This systematic literature review of these interventions for patient education attempts to elucidate the answer to the question: is there sufficient evidence for best practice for delivering genetic information to patients with multifactorial conditions? The various interventions (CD-ROM, group counseling, video/decision aid, and miscellaneous) were analyzed in terms of quality criteria and achievement of specific outcomes and were rated according to the Stetler model for evidence-based practice. Seven main outcomes were evaluated: (1) objective and subjective knowledge assessment, (2) psychological measures (general anxiety, depression, stress, cancer worry), (3) satisfaction/effectiveness of intervention, (4) time spent in counseling (time spent on basic genetic information vs. specific concerns), (5) decision-making/intent to undergo genetic testing, (6) treatment choice and value of that choice, and, finally (7) risk perception. Overall, the computer interventions resulted in more significant findings that were beneficial than any other category followed by the video category, although the group and miscellaneous categories did not measure all of the outcomes reported by the other two categories. Nevertheless, while these groups had neutral or negative findings in some of the outcomes, the computer intervention group showed significant improvement in genetics knowledge, psychological measures, satisfaction/effectiveness, time spent with counselor, and decision/intent to undergo testing.

Publication types

  • Review
  • Systematic Review

MeSH terms

  • Breast Neoplasms / genetics
  • Breast Neoplasms / psychology
  • Computer-Assisted Instruction
  • Decision Making
  • Evidence-Based Practice
  • Female
  • Genetic Counseling / methods
  • Genetic Counseling / psychology
  • Genetic Diseases, Inborn* / psychology
  • Humans
  • Knowledge
  • Male
  • Patient Education as Topic / methods*
  • Patient Satisfaction
  • Perception
  • Risk Factors