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Quality of Life and Impact on the Family in Infants with Congenital Heart Disease

Quality of Life and Impact on the Family in Infants with Congenital Heart Disease. Kathleen Mussatto PhD, RN 1 , Meiqian Ma BA 2 , Mahua Dasgupta MS 2 , Raymond Hoffmann PhD 2 , Laurel Bear MD 2 , Cheryl Brosig PhD 2 Children's Hospital of Wisconsin 1 Medical College of Wisconsin 2.

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Quality of Life and Impact on the Family in Infants with Congenital Heart Disease

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  1. Quality of Life and Impact on the Family in Infants withCongenital Heart Disease Kathleen Mussatto PhD, RN1, Meiqian Ma BA2, MahuaDasgupta MS2, Raymond Hoffmann PhD2, Laurel Bear MD2, Cheryl Brosig PhD2 Children's Hospital of Wisconsin1 Medical College of Wisconsin2 2012 State of the Science Congress on Nursing Research Herma Heart Center

  2. Disclosures • The authors have no conflicts of interest to disclose. • Research was supported in part by – • National Heart, Lung & Blood Institute R25 Diversity Grant at Medical College of Wisconsin • Clinical and Translational Science Institute of Southeastern Wisconsin: NIH UL1RR031973

  3. Congenital Heart Disease (CHD) • Most common form of structural birth defect • Affects > 35,000 babies in the US each year • 25% will require major intervention in the first year of life • ~ 90% will survive to adulthood Beyond Survival: Attention has shifted to optimizing developmental and psychosocial outcomes.

  4. Risk of Developmental Delay Low-Risk High-Risk Wernovsky, Cardiology in the Young, 2006

  5. Circulation, Published On-line July 30, 2012

  6. Recommendations Systematic surveillance, screening, and evaluation throughout childhood to assess – • Academic • Behavioral • Psychosocial and • Adaptive functioning

  7. Goal of Follow-Up • Early detection • Early intervention • Prevention / Reduction of long-term problems

  8. Routine Developmental Follow-Up Children’s Hospital of Wisconsin Developmental Follow-Up Program began January 2007 Developmental and Psychosocial Follow-Up of High-Risk CHD Patients: - Any open heart surgery within the first year of life - Cyanotic lesions - Co-morbidities, i.e., prematurity, other medical or genetic conditions, CPR, > 2 weeks hospitalization, or other perceived risk IRB-approved database, informed consent from participants

  9. Purpose • Little is known about quality of life (QOL) and impact on family (IOF) for infants with complex CHD. • The purpose of this study was to assess parent reports of QOL and IOF in infants with CHD and to examine relationships with demographics, clinical characteristics and developmental outcomes.

  10. Study Population/Design • 125 infants enrolled in developmental follow-up at < 1 year of age, 2007-2010 • Measures: • Development – Bayley Scales of Infant Development (BSID) III(Bayley, 2006) administered by therapists • QOL/IOF – Infant Toddler Quality of Life (ITQOL-97) Questionnaire (Landgraf, 1994; Raat, 2007) a parent-completed generic measure for children 2mos-5yrs of age; 6 child concepts, 3 parent/family concepts; 4-week recall; 5-point Likert scale response options • Demographic and Clinical data from parents or chart

  11. Assessment MeasuresScores/Scales (# of items) Development Bayley Scales of Infant Development III • Cognitive • Language • Expressive • Receptive • Motor • Gross • Fine QOL ITQOL-97 Scales: • Global Health (1) • Physical Abilities (10) • Growth and Development (10) • Bodily Pain / Discomfort (3) • Temperament and Moods (18) • General Health Perceptions (11) IOF ITQOL-97 Scales: • Parental Impact – Emotional (7) • Parental Impact – Time (7) • Family Cohesion (1)

  12. Statistical Analysis • Parametric and nonparametric tests for comparison between groups • T-test / Wilcoxon-Mann-Whitney (2 groups) • ANOVA / Kruskal-Wallis (> 2 groups) • Pearson/Spearman correlations between QOL/IOF and demographic, clinical, and Bayley scale composite scores • Hierarchical linear modeling to identify risk factors for worse QOL/IOF outcomes

  13. Demographic Characteristics

  14. Treatment Characteristics * Median included when data were not normally distributed + Cumulative at time of visit

  15. Status at Visit * Median included when data were not normally distributed + Significantly lower than norms (p < 0.001)

  16. Results QOL/IOF Outcomes - • Not correlated with SES, maternal education, or parental age • Moderately positively correlated with anthropometrics at visit and cognitive, language, and motor development (r = 0.19-0.46, p<0.05) • Negatively correlated with hospital length of stay (r = -0.41-0.52, p<0.01) • ↓ QOL and ↑ IOF were associated with need for tube feedings, other medical or genetic condition, enrollment in developmental therapy

  17. QOL / IOF ScoresCHD vs. Healthy Norms Higher is Better ‡ ‡ † ‡ ‡ ‡ ‡ † † p ≤ 0.05 ‡ p < 0.01 Reference sample – Raat, et al., Quality of Life Research, 2007, 16:445-60

  18. Impact of Feeding Method on QOL/IOF ‡ ‡ † ‡ ‡ ‡ ‡ ‡ † p ≤ 0.05 ‡ p < 0.01 25% of sample required tube feeding

  19. Impact of Other Medical or Genetic Conditions on QOL / IOF * * * * * * * * * * 25% had other medical 14% had genetic syndrome * p < 0.05, different from CHD only group

  20. Impact of Need for Developmental Therapy on QOL / IOF † ‡ ‡ † ‡ ‡ ‡ ‡ † p ≤ 0.05 ‡ p < 0.01 42% in developmental therapy

  21. Risk Factors Variables most commonly associated with worse QOL/IOF outcomes in hierarchical linear models – • Lower weight percentile at visit • Longer hospital length of stay • Need for tube feedings • Presence of other medical/genetic condition • Lower developmental outcome scores

  22. Conclusions and Implications for Practice • Congenital heart disease puts infants and their families at risk for reduced QOL and negative family impact, even very early in life. • QOL scores were significantly lower than healthy norms. • Parental Impact, both Emotional and Time, were more negative; however, Family Cohesion was preserved. • Poor growth, prolonged hospitalization, need for tube feedings, presence of co-morbid conditions, and developmental delay are common risk factors.

  23. Conclusions and Implications for Practice Further research and longitudinal follow-up of children with complex CHD and their families is needed – • to understand the trajectory of development and the overall impact of CHD and its treatment, • to identify children who would benefit from early intervention, • to identify families who may benefit from additional psychosocial support/intervention, and • to provide realistic counseling and anticipatory guidance for families.

  24. Goal of Follow-Up • Early detection • Early intervention • Prevention / Reduction of long-term problems

  25. Thank You Herma Heart Center

  26. ITQOL Sample Items Global Health – “In general, how would you rate your child’s health?” Excellent – Poor Family Cohesion – “In general, how would you rate your family’s ability to get along with one another?” Excellent – Poor General Health Perceptions – “My child has never been seriously ill.” Definitely true – Definitely false Parent Impact – Emotional – “How much anxiety or worry did your child’s physical health cause you?” None at all – A lot

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