IMPACT ON CARERS OF PAEDIATRIC PATIENTS RECEIVING PARENTERAL SUPPORT FOR SHORT BOWEL SYNDROME-ASSOCIATED INTESTINAL FAILURE
Author(s)
Ballinger R1, Macey J2, Lloyd A3, Chen K4
1ICON plc, Abingdon, OXF, UK, 2DRG Abacus, Bicester, OXF, UK, 3Acaster Lloyd Consulting Ltd., London, UK, 4Shire Human Genetic Therapies, Inc., a member of the Takeda group of companies, Cambridge, MA, USA
OBJECTIVES: To assess the impact on carers of paediatric patients receiving parenteral support (PS) for intestinal failure associated with short bowel syndrome (SBS). METHODS: An online cross-sectional survey of carers of paediatric patients with SBS, who are or were PS-dependent, was conducted in the UK with Ethics Committee approval and informed consent. Carers were recruited through an advocacy group (May 2017–June 2017), 2 National Health Service sites (July 2017–August 2017) and email referrals. Carer’s health status, expressed as utility index score (u), was evaluated using the EQ-5D-5L, work and activity impact using the WPAI:SHP, and hours providing care and financial impact from Understanding Society questionnaires. Analysis included subgroups stratified by the number of PS infusion days. Data were summarised as mean±SD unless otherwise noted. RESULTS: Of 45 carers (years, 69% women), 91% were the patient’s parent and 9% were a grandparent/aunt/uncle. Patients (n=36; years [range 1–17 years], 31% girls) had received PS for 12.3±1.14 hours per day and 4.2±3.26 years. Nine patients were not PS-dependent at the time of the survey. Overall, carers provided 14.5±1.33 hours per day of care (mean±SE), which is 14 hours more per day than general population UK norms (0.6±0.02 hours). Carers’ health status scores were lower than UK norms (u=0.79 and 0.87 [n=41,174], respectively). During the week preceding the survey, carers reported 41.4±31.41% and 52.2±29.38% impairment in work (time and productivity, n=17) and total activities, respectively. During the preceding month, carers missed 5.3±7.97 work days (n=20). Fewer carers reported that they were managing financially (ie, ‘living comfortably’ or ‘doing alright’) compared with UK norms (33% and 72% [n=45,079], respectively). Subgroup analysis found no consistent direct relationships across the measures. CONCLUSIONS: In this survey, carers of paediatric patients with SBS experience a range of daily impacts and have lower heath status than the UK general population. Funding: Shire, a Takeda company
Conference/Value in Health Info
2019-11, ISPOR Europe 2019, Copenhagen, Denmark
Code
PIH65
Topic
Patient-Centered Research
Topic Subcategory
Adherence, Persistence, & Compliance, Health State Utilities, Patient Engagement, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Nutrition, Rare and Orphan Diseases