IMPACT ON CARERS OF ADULT PATIENTS RECEIVING PARENTERAL SUPPORT FOR SHORT BOWEL SYNDROME-ASSOCIATED INTESTINAL FAILURE
Author(s)
Ballinger R1, Macey J1, Lloyd A2, Chen K3
1ICON plc, Abingdon, OXF, UK, 2Acaster Lloyd Consulting Ltd., London, UK, 3Shire Human Genetic Therapies, Inc., a member of the Takeda group of companies, Cambridge, MA, USA
Presentation Documents
OBJECTIVES: To assess the impact on carers of adult patients receiving parenteral support (PS) for intestinal failure associated with short bowel syndrome (SBS–IF). METHODS: An online cross-sectional survey of carers of patients with SBS–IF was conducted in the UK. Carers were recruited from an advocacy group (June 2016–January 2017) and 2 National Health Service sites (December 2016–February 2017). Carer’s health status, expressed as utility index score (u), was evaluated using EQ-5D-5L, work and activity impact using WPAI:SHP, and hours providing care and financial impact using Understanding Society questionnaires. Data were summarised as mean±SD with exploratory correlations. RESULTS:Of the 47 carers (50.6±15.34 years; 60% women), 30 (64%) were the spouse/partner of the patient. Patients (n=47; 52.5±15.25 years; 53% women) had been receiving PS for 7.3±7.35 years. Overall, care was provided for 4.5±0.50 hours per day (mean±SE), 4 hours per day more than UK norms, and 6.0±1.66 days per week. During the week preceding the survey, carers spent 13.1±16.11 and 11.3±14.33 hours providing personal care and practical support, respectively. The level of carers’ health status was similar to UK norms (u=0.88); however, 66% of carers reported health problems versus 43% of UK norms. Anxiety/depression was reported most frequently by carers (53%) versus UK norms (21%). Carers reported 28.2±24.91% and 37.9±29.19% impairment in work (time and productivity, n=29) and total activities, respectively. During the preceding month, carers missed 2.9±4.83 work days (n=30). There was correlation between greater number of patients’ PS infusion hours and worsening impact on carers: number of hours providing care (rs=0.35), EQ-5D-5L index score (rs=–0.30) and anxiety/depression domain (rs=0.36), work (rs=0.47) and activity impairment (rs=0.36) and managing financially (rs=0.42). CONCLUSIONS: There are various daily impacts on carers of adult patient with SBS–IF. The daily hours for patients’ PS infusions correlated with work, financial, and personal challenges for carers. Funding: Shire, a Takeda company
Conference/Value in Health Info
2019-11, ISPOR Europe 2019, Copenhagen, Denmark
Code
PAM13
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