Quality of Life and Impact on the Family in Infants with Congenital Heart Disease
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Transcript of 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, RN1, Meiqian Ma BA2, Mahua Dasgupta MS2, Raymond Hoffmann PhD2, Laurel Bear MD2, Cheryl Brosig PhD2
Children's Hospital of Wisconsin1
Medical College of Wisconsin2
2012 State of the ScienceCongress on Nursing Research
Herma Heart Center
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
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.
Risk of Developmental Delay
Wernovsky, Cardiology in the Young, 2006
Low-Risk High-Risk
Circulation, Published On-line July 30, 2012
Recommendations
Systematic surveillance, screening, and evaluation throughout childhood to assess –
• Academic• Behavioral• Psychosocial and• Adaptive functioning
Goal of Follow-Up
• Early detection
• Early intervention
• Prevention / Reductionof long-term problems
Routine Developmental Follow-UpChildren’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
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.
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
Assessment MeasuresScores/Scales (# of items)
QOLITQOL-97 Scales:• Global Health (1)• Physical Abilities
(10)• Growth and
Development (10)• Bodily Pain /
Discomfort (3)• Temperament and
Moods (18)• General Health
Perceptions (11)
IOFITQOL-97 Scales:• Parental Impact
– Emotional (7)• Parental Impact
– Time (7)• Family Cohesion
(1)
DevelopmentBayley Scales of Infant
Development III• Cognitive• Language
• Expressive• Receptive
• Motor• Gross• Fine
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
Demographic CharacteristicsVariable N = 125 % of sampleGender Male = 73
Female = 5258%42%
Race White, non-Hispanic = 79Other = 46
63%37%
Prenatally Diagnosed 71 57%
Premature (GA < 37 weeks) 22 18%
Diagnostic Category Single Ventricle = 34Two Ventricle = 91
27%74%
Other chronic conditions None (CHD only) = 77Other medical = 31Genetic syndrome = 17
62%25%14%
Socioeconomic Status Low = 16Mid = 43High = 25Unknown = 41
13%34%20%33%
Treatment CharacteristicsVariable N % Mean / Median* SD RangeLength of Hospitalization (days)+ 124 99% 48 / 31 45 4 - 238
Age at 1st Open Heart (days) 92 73% 44 / 12 54 1 - 209
Total Open Heart Procedures+ 92 73% 1.9 / 1 1.4 0 - 3
Cardiopulmonary Bypass (CPB) Time (minutes)+
92 73% 195 82 27 - 436
Deep Hypothermic Circulatory Arrest Time (minutes)+
33 26% 12 8 1 - 42
* Median included when data were not normally distributed+ Cumulative at time of visit
Status at VisitVariable Mean / Median* SD RangeAge at Visit (months) 7.2 1.2 4.3 – 11.5
Height %ile 48 31 2 - 97
Weight %ile 35 / 25 29 2 - 98
Head Circumference %ile 44 29 2 - 98
Bayley Scale III Score - Cognitive 100.4 11.3 70 - 130
Bayley Scale III Score – Language+ 95.9 12.1 56 - 124
Bayley Scale III Score – Motor+ 89.8 18.6 49 - 136
Tube feeding required N = 31 (25%)
Currently in Developmental Therapy N = 53 (42%)
* Median included when data were not normally distributed+ Significantly lower than norms (p < 0.001)
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
QOL / IOF ScoresCHD vs. Healthy Norms
Global health
Physical abilities
Growth and development
Bodily pain/discomfort
Temperament and m
oods
General health perceptions
Parental impact-e
motional
Parental impact-tim
e
Family cohesion0
20406080
100120
Infants with CHD Healthy Norms
Score
† p ≤ 0.05‡ p < 0.01
†‡ ‡ ‡ ‡ ‡ ‡ †
Higher is Better
Reference sample – Raat, et al., Quality of Life Research, 2007, 16:445-60
Impact of Feeding Method on QOL/IOF
Global health
Physical abilities
Growth and development
Bodily pain/discomfort
Temperament and m
oods
General health perceptions
Parental impact-e
motional
Parental impact-tim
e
Family cohesion0
20
40
60
80
100
Tube Feeding Oral Feeding
Score
† p ≤ 0.05‡ p < 0.01
‡ ‡ ‡ ‡ ‡ ‡ ‡†
25% of sample required tube feeding
Impact of Other Medical or Genetic Conditions on QOL / IOF
Global health
Physical abilities
Growth and development
Bodily pain/discomfort
Temperament and moods
General health perceptions
Parental impact-emotional
Parental impact-tim
e
Family cohesion0
20
40
60
80
100
CHD only CHD+other medical CHD+genetic syndrome
Score
* p < 0.05, different from CHD only group
* * * * * *
*
* * *
25% had other medical14% had genetic syndrome
Impact of Need for Developmental Therapy on QOL / IOF
Global health
Physical abilities
Growth and development
Bodily pain/discomfort
Temperament and m
oods
General health perceptions
Parental impact-e
motional
Parental impact-tim
e
Family cohesion0
20
40
60
80
100
In Developmental Therapy Not in Developmental Therapy
Score
† p ≤ 0.05‡ p < 0.01
† †‡ ‡ ‡ ‡ ‡ ‡
42% in developmental therapy
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
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.
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.
Goal of Follow-Up
• Early detection
• Early intervention
• Prevention / Reductionof long-term problems
Thank You
Herma Heart Center
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