Introduction Developmental behavioural disabilities (DBD) including autism spectrum disorder (ASD), attention and other learning difficulties is well known to be associated with significantly high rates of gastrointestinal problems, including constipation and faecal incontinence (CCFI), imposing a significant burden on child and the family.¹ A child living with DBD has both impact on the child and their families’ quality of life (QoL).² It is also well recognised that having a child with CCFI has an impact on the child and families QoL.^{3 4} Yet, understanding the impact of having a child both with CCFI and DBD compared to a child without DBD, remains rudimentary.¹ We aim to compare bowel and QoL outcomes for patients and their families with DBD and CCFI, compared to patients without DBD.

Methods Patients with CCFI who presented to our specialised service from the period of September 2016 and September 2022 were included. Measures included: demographics, bowel scores: St Marks Incontinence Scores (SMIC) and Cleveland Constipation Scores (CCS), risk of distress: Paediatric Index of Emotional Distress (PI-ED), quality of life for patient and family (Pediatric Quality of Life Inventory) and patient perception of severity of their condition using Wong Baker smile faces: scale of 0–10 (10 being the worst).

Results Out of 341 patients with functional constipation, 29% (100/341) had DBD. There was a male predominance of males with DBD and CCFI compared to patients without DBD. There were no significant differences between the groups regarding bowel scores and perception of severity of their condition. Patients with DBD and CCFI, significantly demonstrated lower Ped-QL for the patient and family impact module (p<0.05) for all parameters, except ‘worry’. Patients with DBD and CCFI were also significantly higher risk of distress compared to patients without DBD (p<0.001). Refer to table 1.

Conclusion This study demonstrates the additional burden of having DBD and CCFI in patients and their families:

• QoL and risk of distress is significantly worse in patients with both CCFI and DBD.

• It is impossible to separate the relative contribution CCFI and DBD to poor QoL.

• A novel approach is necessary to intervene in the perpetual deterioration in symptoms and QoL

• Earlier recognition and clinical assessment of DBD and CCFI is urgently necessary.A pathway that identifies and manages children at risk of poor QoL related to DBD and CCFI should be explored.

References

1. Mulay K, Karthik V. Managing constipation in children with ASD – A challenge worth tacking. Ped & Neo. 2022;63: 3, 211–219.

2. Turnage D, Conner N. Quality of life of parents of children with autism spectrum disorder: an integrative literature review. J Spec Pediatr Nurs. 2022;27(4):e 12391.

3. Karami, H, Yazdani, J, Khalili, N. The relationship between functional constipation and emotional, social, physical, and educational functioning of children. Iranian J of Psyc Behav Sciences. 2017;11(1).

4. Kovacic K, Sood MR, Mugie S. A multicenter study on childhood constipation and fecal incontinence: effects on quality of life. J Pediatr. 2015;166(6):1482–1487.