Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)

Tim Vanuytsel; Francisca Joly; Kishore Iyer; Federico Bolognani; Gail Mitchell; Sari Berger; Roger Lamoureux; Leighann Litcher-Kelly; Caitlyn Lowe; Paolo Medrano; Mena Boules; Palle Jeppesen

doi:10.1007/s10620-025-09656-x

Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)

Tim Vanuytsel, Francisca Joly, Kishore Iyer, Federico Bolognani, Gail Mitchell, Sari Berger, Roger Lamoureux, Leighann Litcher-Kelly, Caitlyn Lowe, Paolo Medrano, Mena Boules, Palle Jeppesen

Afdeling for Transplantation og Sygdomme i Fordøjelsessystemet CKO

Abstract

PURPOSE: Short bowel syndrome with intestinal failure (SBS-IF) requires lengthy parenteral support (PS) infusions to maintain nutrition and hydration, and may also involve treatment with glucagon-like peptide 2 (GLP-2) analog injections. SBS-IF and its treatment have significant health-related quality-of-life (HRQoL) impacts on patients. While existing patient-reported outcome (PRO) questionnaires measure HRQoL impacts of SBS, differences in intestinal anatomy or treatment type have their own impacts to patients that warrant assessment. This qualitative research supports the content validity of three new questionnaires to measure these specific impacts on patients with SBS-IF (i.e., questionnaires are measuring what is important in ways that are understandable to patients).

METHODS: Qualitative research activities, including a targeted literature review, meetings with clinical experts, and patient interviews, were conducted to understand the patient experience of SBS-IF and its treatment and to inform the development and evaluation of questionnaires to measure HRQoL impacts related to patients with jejunostomy ('stoma'); patients with colon-in-continuity and no stoma ('CIC'); and PS infusions and GLP-2 analog injections for both groups of patients.

RESULTS: From the publications (n = 26), and meetings with experts (n = 8), three draft questionnaires were constructed for impacts specific to SBS-IF with stoma, impacts specific to SBS-IF with CIC, treatment impacts related to PS infusions and GLP-2 analog injections. Qualitative patient interviews (n = 23) confirmed the questionnaires' relevance and comprehensibility; minor revisions were subsequently made to the questionnaires based upon participants' suggestions.

CONCLUSION: This research provides content validity evidence for the three questionnaires to measure HRQoL impacts of SBS-IF, PS infusions, and GLP-2 analog injections among patients with SBS-IF.

Originalsprog	Engelsk
Tidsskrift	Digestive Diseases and Sciences
ISSN	0002-9211
DOI	https://doi.org/10.1007/s10620-025-09656-x
Status	E-pub ahead of print - 16 jan. 2026

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10.1007/s10620-025-09656-xLicens: CC BY-NC

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Vanuytsel, T., Joly, F., Iyer, K., Bolognani, F., Mitchell, G., Berger, S., Lamoureux, R., Litcher-Kelly, L., Lowe, C., Medrano, P., Boules, M., & Jeppesen, P. (2026). Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF). Digestive Diseases and Sciences. Advance online publication. https://doi.org/10.1007/s10620-025-09656-x

Vanuytsel, T, Joly, F, Iyer, K, Bolognani, F, Mitchell, G, Berger, S, Lamoureux, R, Litcher-Kelly, L, Lowe, C, Medrano, P, Boules, M & Jeppesen, P 2026, 'Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)', Digestive Diseases and Sciences. https://doi.org/10.1007/s10620-025-09656-x

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title = "Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)",

abstract = "PURPOSE: Short bowel syndrome with intestinal failure (SBS-IF) requires lengthy parenteral support (PS) infusions to maintain nutrition and hydration, and may also involve treatment with glucagon-like peptide 2 (GLP-2) analog injections. SBS-IF and its treatment have significant health-related quality-of-life (HRQoL) impacts on patients. While existing patient-reported outcome (PRO) questionnaires measure HRQoL impacts of SBS, differences in intestinal anatomy or treatment type have their own impacts to patients that warrant assessment. This qualitative research supports the content validity of three new questionnaires to measure these specific impacts on patients with SBS-IF (i.e., questionnaires are measuring what is important in ways that are understandable to patients).METHODS: Qualitative research activities, including a targeted literature review, meetings with clinical experts, and patient interviews, were conducted to understand the patient experience of SBS-IF and its treatment and to inform the development and evaluation of questionnaires to measure HRQoL impacts related to patients with jejunostomy ('stoma'); patients with colon-in-continuity and no stoma ('CIC'); and PS infusions and GLP-2 analog injections for both groups of patients.RESULTS: From the publications (n = 26), and meetings with experts (n = 8), three draft questionnaires were constructed for impacts specific to SBS-IF with stoma, impacts specific to SBS-IF with CIC, treatment impacts related to PS infusions and GLP-2 analog injections. Qualitative patient interviews (n = 23) confirmed the questionnaires' relevance and comprehensibility; minor revisions were subsequently made to the questionnaires based upon participants' suggestions.CONCLUSION: This research provides content validity evidence for the three questionnaires to measure HRQoL impacts of SBS-IF, PS infusions, and GLP-2 analog injections among patients with SBS-IF.",

author = "Tim Vanuytsel and Francisca Joly and Kishore Iyer and Federico Bolognani and Gail Mitchell and Sari Berger and Roger Lamoureux and Leighann Litcher-Kelly and Caitlyn Lowe and Paolo Medrano and Mena Boules and Palle Jeppesen",

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doi = "10.1007/s10620-025-09656-x",

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TY - JOUR

T1 - Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)

AU - Vanuytsel, Tim

AU - Joly, Francisca

AU - Iyer, Kishore

AU - Bolognani, Federico

AU - Mitchell, Gail

AU - Berger, Sari

AU - Lamoureux, Roger

AU - Litcher-Kelly, Leighann

AU - Lowe, Caitlyn

AU - Medrano, Paolo

AU - Boules, Mena

AU - Jeppesen, Palle

PY - 2026/1/16

Y1 - 2026/1/16

N2 - PURPOSE: Short bowel syndrome with intestinal failure (SBS-IF) requires lengthy parenteral support (PS) infusions to maintain nutrition and hydration, and may also involve treatment with glucagon-like peptide 2 (GLP-2) analog injections. SBS-IF and its treatment have significant health-related quality-of-life (HRQoL) impacts on patients. While existing patient-reported outcome (PRO) questionnaires measure HRQoL impacts of SBS, differences in intestinal anatomy or treatment type have their own impacts to patients that warrant assessment. This qualitative research supports the content validity of three new questionnaires to measure these specific impacts on patients with SBS-IF (i.e., questionnaires are measuring what is important in ways that are understandable to patients).METHODS: Qualitative research activities, including a targeted literature review, meetings with clinical experts, and patient interviews, were conducted to understand the patient experience of SBS-IF and its treatment and to inform the development and evaluation of questionnaires to measure HRQoL impacts related to patients with jejunostomy ('stoma'); patients with colon-in-continuity and no stoma ('CIC'); and PS infusions and GLP-2 analog injections for both groups of patients.RESULTS: From the publications (n = 26), and meetings with experts (n = 8), three draft questionnaires were constructed for impacts specific to SBS-IF with stoma, impacts specific to SBS-IF with CIC, treatment impacts related to PS infusions and GLP-2 analog injections. Qualitative patient interviews (n = 23) confirmed the questionnaires' relevance and comprehensibility; minor revisions were subsequently made to the questionnaires based upon participants' suggestions.CONCLUSION: This research provides content validity evidence for the three questionnaires to measure HRQoL impacts of SBS-IF, PS infusions, and GLP-2 analog injections among patients with SBS-IF.

AB - PURPOSE: Short bowel syndrome with intestinal failure (SBS-IF) requires lengthy parenteral support (PS) infusions to maintain nutrition and hydration, and may also involve treatment with glucagon-like peptide 2 (GLP-2) analog injections. SBS-IF and its treatment have significant health-related quality-of-life (HRQoL) impacts on patients. While existing patient-reported outcome (PRO) questionnaires measure HRQoL impacts of SBS, differences in intestinal anatomy or treatment type have their own impacts to patients that warrant assessment. This qualitative research supports the content validity of three new questionnaires to measure these specific impacts on patients with SBS-IF (i.e., questionnaires are measuring what is important in ways that are understandable to patients).METHODS: Qualitative research activities, including a targeted literature review, meetings with clinical experts, and patient interviews, were conducted to understand the patient experience of SBS-IF and its treatment and to inform the development and evaluation of questionnaires to measure HRQoL impacts related to patients with jejunostomy ('stoma'); patients with colon-in-continuity and no stoma ('CIC'); and PS infusions and GLP-2 analog injections for both groups of patients.RESULTS: From the publications (n = 26), and meetings with experts (n = 8), three draft questionnaires were constructed for impacts specific to SBS-IF with stoma, impacts specific to SBS-IF with CIC, treatment impacts related to PS infusions and GLP-2 analog injections. Qualitative patient interviews (n = 23) confirmed the questionnaires' relevance and comprehensibility; minor revisions were subsequently made to the questionnaires based upon participants' suggestions.CONCLUSION: This research provides content validity evidence for the three questionnaires to measure HRQoL impacts of SBS-IF, PS infusions, and GLP-2 analog injections among patients with SBS-IF.

U2 - 10.1007/s10620-025-09656-x

DO - 10.1007/s10620-025-09656-x

M3 - Journal article

C2 - 41543657

SN - 0002-9211

JO - Digestive Diseases and Sciences

JF - Digestive Diseases and Sciences

ER -

Qualitative Research for the Development of Three New Quality of Life and Treatment Impact Questionnaires for Adults with Short Bowel Syndrome with Intestinal Failure (SBS-IF)

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