Impacts on Carers of Patients with SBS-IF
Research type
Research Study
Full title
Quality of Life Impacts on Carers of Patients with Short Bowel Syndrome-associated Intestinal Failure receiving Parenteral Support
IRAS ID
208349
Contact name
Rachel Ballinger
Contact email
Sponsor organisation
Shire
Duration of Study in the UK
0 years, 4 months, 31 days
Research summary
This research is a survey to assess quality of life carers of patients with short bowel syndrome–associated intestinal failure (SBS-IF) who are receiving parenteral support (PS). SBS-IF patients have had part of their intestine removed because it stopped working. SBS-IF results in poor absorption of nutrients, often requiring artificial nutrition and fluids intravenously (called PS). Severely affected SBS-IF patients may require several hours of PS every day. SBS-IF patients receiving PS often receive regular support in the management of their condition or daily life from family or friends.\n\nThe survey has been designed to assess the quality of life impact of caring for SBS-IF patients who receive PS. Carers must be aged 16 years or older and care for an SBS-IF patient receiving PS (aged 18 years or older). The survey was developed following a targeted review of relevant literature and exploratory carer interviews (n=5). The survey was also reviewed by a relevant patient advocate group (Patients on Intravenous & Nasogastric Nutrition Treatment; PINNT).\n\nWe are seeking to recruit up to 70 carers. Our aim is to recruit an even number of carers of people who receive one to seven days or nights of PS per week (e.g., ten carers who care for an SBS-IF patient who receives PS for five days or nights per week). The survey will primarily be completed online, although an offline version is available. The survey may take <45 minutes to complete, it can be completed in more than one sitting. The survey comprises three broad sections: carer demographics, patient demographics, type and impact of care provided. It includes study specific items and standardised measures including: select items from iMTA Valuation of Informal Care Questionnaire and Understanding Society Survey, EQ-5D-5L, Carer Experience Scale, Caregiver Strain Index+ and Work Productivity and Activity Impairment Questionnaire.
REC name
London - London Bridge Research Ethics Committee
REC reference
16/LO/1654
Date of REC Opinion
6 Sep 2016
REC opinion
Favourable Opinion