Patient and family experience of the clinical-care pathway for teduglutide in patients with short bowel syndrome and type 3 intestinal failure

Patient and family experience of the pathway for glucagon-like peptide 2 analogue

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN40592528

Enrollment

Registered

2019-04-29

Start date

2019-06-05

Completion date

Unknown

Last updated

2023-06-20

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Intestinal failure Digestive System

Interventions

This is a mixed method study looking at the patient and family experience of the clinical pathway of teduglutide and how patients and families experience any transfer from parenteral nutrition to norm

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Diagnosed with short bowel syndrome or intestinal failure 2. Metabolically stable, 3. Apyrexial 4. Able to give informed consent 5. Can speak English 6. Stable on PN following a period of postsurgical intestinal adaption 7. Dependent on receiving PN at least twice a week 8. Able to inject themselves with Tedugutide 9. Managed by the IFU at Salford Royal NHS Trust

Exclusion criteria

Exclusion criteria: 1. Under 18 years of age 2. Not suitable for Teduglutide: 2.1 Pregnant or planning conception in the next 12 months 2.2 History of malignancies within the last five years 2.3 Severe hepatic or renal impairment 3. Clinically unstable concomitant diseases: cardiovascular, respiratory, renal, infectious, endocrine, hepatic, or central nervous system.

Design outcomes

Primary

Measure	Time frame
The primary aim of this research is the patient and carer experience of the teduglutide pathway. This will be measured by: 1. Patient interviews taken at baseline, 6 weeks, 24 weeks and 52 weeks ±4 weeks 2. Patient questionnaires: Parenteral Nutrition Impact questionnaire, Activities of daily living questionnaire, EQ-5D-5L, Hospital and anxiety 3. and depression scale, Patient health questionnaire-9 taken at baseline, 16 weeks, 36 weeks and 52 weeks 3. 3 day food diaries taken at baseline, 16 weeks, 36 weeks and 52 weeks 4. Handgrip strength taken at baseline, 16 weeks, 36 weeks and 52 weeks 5. Bioelectrical impendence taken at baseline, 16 weeks, 36 weeks and 52 weeks 6. Family member interview at 6 weeks, 24 weeks and 52 weeks ±4 weeks	—

Measure

Time frame

The primary aim of this research is the patient and carer experience of the teduglutide pathway. This will be measured by: 1. Patient interviews taken at baseline, 6 weeks, 24 weeks and 52 weeks ±4 weeks 2. Patient questionnaires: Parenteral Nutrition Impact questionnaire, Activities of daily living questionnaire, EQ-5D-5L, Hospital and anxiety 3. and depression scale, Patient health questionnaire-9 taken at baseline, 16 weeks, 36 weeks and 52 weeks 3. 3 day food diaries taken at baseline, 16 weeks, 36 weeks and 52 weeks 4. Handgrip strength taken at baseline, 16 weeks, 36 weeks and 52 weeks 5. Bioelectrical impendence taken at baseline, 16 weeks, 36 weeks and 52 weeks 6. Family member interview at 6 weeks, 24 weeks and 52 weeks ±4 weeks

—

Secondary

Measure	Time frame
There are no secondary outcome measures.	—

Countries

England, United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026