Improving care and outcomes for patients with short bowel syndrome
Research type
Research Study
Full title
A Value-Based Healthcare approach to SBS management pathway
IRAS ID
316825
Contact name
Simon Gabe
Contact email
Sponsor organisation
NAPO Therapeutics S.r.l
Duration of Study in the UK
0 years, 5 months, 1 days
Research summary
Short Bowel Syndrome (SBS) is a condition where patients affected have a short, small intestine. This may be due to an inherited condition or due to surgery related to other conditions (eg IBD, cancer etc). Patients affected from SBS suffer from malnutrition due to their inability to absorb sufficient nutrients from food and many require additional support in the form of parenteral nutrition. This condition has a debilitating effect on the lives of not only the patients but also their families and caregivers. The condition is rare and care provision needs to be highly personalised to provide optimal care. Hence, the need for a more comprehensive and efficient care to maximise the health outcomes of patients. To this purpose, this study will use Value-Based Healthcare (VBH) as a model for designing a healthcare system with the rationale that achieving high value for patients must become the overarching goal of health care delivery. Here value is meant by health outcomes achieved that matter to patients relative to the cost of achieving those outcomes. By applying the VBH approach, the study aims to better understand care management and quality of life of individuals affected by SBS, within and outside the hospital setting. It will employ a mixed-method approach, involving qualitative and quantitative data collection from patients, their caregivers, and the clinical team. Patients and caregivers will engage in one-to-one semi-structured interviews to understand the unarticulated and unmet needs of all the stakeholders involved in the care pathway. In addition, 3 co-designing sessions of 1 hour each with the multidisciplinary clinical team involved in SBS patients’ management will be carried out to 1) better understand unmet and unarticulated needs of healthcare professionals and 2) design an optimal SBS care pathway. The multidisciplinary clinical team, facilitated by YBP and based on the results of the anthropological conversations, will together identify patient-reported outcome measures (PROM) and patient-reported experience measures (PREMs). The PREMs and PROMs identified will form the basis for a questionnaire that will be sent out to the study participants after the study in order to assess the quality of care delivered by the new optimal care pathway.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
22/PR/1549
Date of REC Opinion
11 May 2023
REC opinion
Further Information Favourable Opinion