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