Nitin Sharma, S Agarwala, V. Bhatnagar LONG TERM FUNCTIONAL OUTCOME AND QUALITY OF LIFE IN OPERATED CASES OF HIRSCHPRUNG’S DISEASE Nitin Sharma, S Agarwala, V. Bhatnagar Department of Pediatric Surgery All India Institute of Medical Sciences New Delhi,India

Aims and Objectives LONG TERM OUTCOMES Quality of life Continence status

Study design- Cross sectional study Materials and Methods Study design- Cross sectional study Mean age at surgery- 2 years 9 months(1-5 years) Mean age at evaluation-7 years 9 months(2-17 years) n=33 Hirschsprung's disease (Long + short segment )=28 Total Colonic Aganglionosis=5  

Patient Selection ≥3 years of age at evaluation INCLUSION CRITERIA EXCLUSION CRITERIA ≥3 years of age at evaluation at least 2 years Post repair Completed all the procedures Pull through done at AIIMS Refusal of consent for participation Redo pull through cases Associated conditions like Down’s syndrome, mental retardation, etc.

Continence status: Krickenbeck Classification (2005) VOLUNTARY BOWEL MOVEMENTS PRESENT Feeling of urge + Capacity to verbalize +Hold the bowel movement ABSENT SOILING S0 No soiling S1 Occasionally (once or twice per week)/ S2 Soiling everyday S3 Constant soiling CONSTIPATION C0 Absent C1 Managed by changes in diet C2 Requires laxatives C3 Resistant to diet and laxatives

Result of continence status 29

Results: Soiling Incidence: 12/33(36%) All had minimal soiling (S1) Correlation of soiling with various parameters Age (p=0.790) Sex (p=0.284) Diagnosis (p=0.328) Type of procedure(p=0.268) Bowel Pulled down(p=0.118)

Results: Constipation Incidence: 4/33(12%) All had minimal constipation (C1) Correlation of soiling with various parameters Age (p=0.346) Sex (p=1.000) Diagnosis (p=1.000) Type of procedure(p=0.392) Bowel Pulled down(p=0.146)

Quality of life questionnaire Social Habit Regular habit 3 Irregular habit 2 Different habit with problem 1 No social activity School Attendance Full time Part time Never Daily activity As peers Less than pears Restricted Relation to peers Good 2 Limited 1 No relation Feelings Normal 3 Feeling different Less appreciated Afraid and depressed Total 12

Grading of quality of life QOL Score Patients GOOD 8-12 32(97%) FAIR 5-7 1(3%) POOR 0-4

QOL DIAGNOSIS TYPE OF PROCEDURE SEX AGE MEAN=11 MEAN=11 QOL MEAN=11 MEAN=11 MEAN=11 SEX AGE PART OF THE BOWEL PULLED THROUGH

SOCIAL HABIT SOILING CONSTIPATION P=0.046 P=0.571 DIAGNOSIS P=1.00 TYPE OF PROCEDURE P=0.690 P=0.006 P=1.00 AGE SEX PART OF THE BOWEL PULLED THROUGH

SCHOOL ATTENDENCE SOILING CONSTIPATION P=0.045 P=0.297 DIAGNOSIS TYPE OF PROCEDURE P=0.327 P=0.656 P=1.00 AGE SEX PART OF THE BOWEL PULLED THROUGH

RELATION TO PEERS SOILING CONSTIPATION P=0.523 P=1.00 DIAGNOSIS P=1.00 TYPE OF PROCEDURE P=0.432 P=0.536 P=1.00 AGE SEX PART OF THE BOWEL PULLED THROUGH

Conclusion Continence and voluntary bowel movements are usually present. Few patients have constipation and soiling. Most of the patients have a good quality of life Soiling strongly affects quality of life (social habits and school attendance).

THANKS