Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study

Hayley Prout; Cherry-Ann Waldron; Brenig Gwilym; Emma Thomas-Jones; Sarah Milosevic; Philip Pallmann; Debbie Harris; Adrian Edwards; Christopher P Twine; Ian Massey; Jo Burton; Philippa Stewart; Sian Jones; David Cox; David C Bosanquet; Lucy Brookes-Howell; PERCEIVE study group

doi:10.1136/bmjopen-2025-104407

Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study

Hayley Prout^*, Cherry-Ann Waldron, Brenig Gwilym, Emma Thomas-Jones, Sarah Milosevic, Philip Pallmann, Debbie Harris, Adrian Edwards, Christopher P Twine, Ian Massey, Jo Burton, Philippa Stewart, Sian Jones, David Cox, David C Bosanquet, Lucy Brookes-Howell, PERCEIVE study group

^*Corresponding author for this work

Bristol Medical School (THS)

Research output: Contribution to journal › Article (Academic Journal) › peer-review

Abstract

Objectives:

Shared decision-making is widely advocated in policy and practice, but how it is to be applied in a high-stakes clinical decision such as major lower limb amputation due to chronic limb-threatening ischaemia or diabetic foot is unclear. The aim of this study was to explore the communication, consent, risk prediction and decision-making process in relation to major lower limb amputation.

Design:

A qualitative study (done as part of a broader mixed-methods study) using semi-structured interviews. Interview transcriptions were analysed using thematic analysis.

Setting:

Vascular centres in three large National Health Service hospitals in Wales and England, UK, between 1 October 2020 and 30 September 2022.

Participants:

A purposive sample of 18 patients for whom major lower limb amputation was considered as a treatment option/carried out, with interviews conducted before or within 4 months of amputation and 4–6 months after amputation. A further purposive sample of 20 healthcare professionals (including eight surgeons) involved in supporting or conducting major lower limb amputation decision-making.

Findings:

Five major categories were identified that highlighted the challenges of ensuring shared decision-making associated with major lower limb amputation: (i) patients’ limited understanding, (ii) variable patient attitudes to decision-making, (iii) healthcare professionals’ perceived challenges to sharing decision-making, (iv) surgeons’ paternalism and (v) patients’ and healthcare professionals’ decisional regret/possible consequences of challenges.

Conclusion:

Amputation is a life-changing decision for both patients and healthcare professionals, with huge consequences. Despite being considered the gold standard, our findings highlight several challenges to effective shared decision-making for major lower limb amputation. Shared decision-making training for healthcare professionals is paramount if these limitations are to be addressed and patients are to feel confident in being adequately informed about the treatment decisions that they make.

Trial registration number NCT04903756.

Original language	English
Article number	e104407
Number of pages	12
Journal	BMJ Open
Volume	16
Issue number	1
DOIs	https://doi.org/10.1136/bmjopen-2025-104407
Publication status	Published - 12 Jan 2026

Bibliographical note

Publisher Copyright:
© Author(s) (or their employer(s)) 2026.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

Adult
Aged
Female
Humans
Male
Middle Aged
Amputation, Surgical/psychology
Decision Making, Shared
Diabetic Foot/surgery
England
Interviews as Topic
Lower Extremity/surgery
Patient Participation
Qualitative Research
Wales

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Prout, H., Waldron, C.-A., Gwilym, B., Thomas-Jones, E., Milosevic, S., Pallmann, P., Harris, D., Edwards, A., Twine, C. P., Massey, I., Burton, J., Stewart, P., Jones, S., Cox, D., Bosanquet, D. C., Brookes-Howell, L., & PERCEIVE study group (2026). Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study. BMJ Open, 16(1), Article e104407. https://doi.org/10.1136/bmjopen-2025-104407

@article{6cd19032f8364679b0cd01454cfe2fb7,

title = "Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study",

abstract = "Objectives:Shared decision-making is widely advocated in policy and practice, but how it is to be applied in a high-stakes clinical decision such as major lower limb amputation due to chronic limb-threatening ischaemia or diabetic foot is unclear. The aim of this study was to explore the communication, consent, risk prediction and decision-making process in relation to major lower limb amputation. Design:A qualitative study (done as part of a broader mixed-methods study) using semi-structured interviews. Interview transcriptions were analysed using thematic analysis. Setting:Vascular centres in three large National Health Service hospitals in Wales and England, UK, between 1 October 2020 and 30 September 2022. Participants:A purposive sample of 18 patients for whom major lower limb amputation was considered as a treatment option/carried out, with interviews conducted before or within 4 months of amputation and 4–6 months after amputation. A further purposive sample of 20 healthcare professionals (including eight surgeons) involved in supporting or conducting major lower limb amputation decision-making. Findings: Five major categories were identified that highlighted the challenges of ensuring shared decision-making associated with major lower limb amputation: (i) patients{\textquoteright} limited understanding, (ii) variable patient attitudes to decision-making, (iii) healthcare professionals{\textquoteright} perceived challenges to sharing decision-making, (iv) surgeons{\textquoteright} paternalism and (v) patients{\textquoteright} and healthcare professionals{\textquoteright} decisional regret/possible consequences of challenges. Conclusion:Amputation is a life-changing decision for both patients and healthcare professionals, with huge consequences. Despite being considered the gold standard, our findings highlight several challenges to effective shared decision-making for major lower limb amputation. Shared decision-making training for healthcare professionals is paramount if these limitations are to be addressed and patients are to feel confident in being adequately informed about the treatment decisions that they make. Trial registration number NCT04903756.",

keywords = "Adult, Aged, Female, Humans, Male, Middle Aged, Amputation, Surgical/psychology, Decision Making, Shared, Diabetic Foot/surgery, England, Interviews as Topic, Lower Extremity/surgery, Patient Participation, Qualitative Research, Wales",

author = "Hayley Prout and Cherry-Ann Waldron and Brenig Gwilym and Emma Thomas-Jones and Sarah Milosevic and Philip Pallmann and Debbie Harris and Adrian Edwards and Twine, \{Christopher P\} and Ian Massey and Jo Burton and Philippa Stewart and Sian Jones and David Cox and Bosanquet, \{David C\} and Lucy Brookes-Howell and \{PERCEIVE study group\}",

note = "Publisher Copyright: {\textcopyright} Author(s) (or their employer(s)) 2026.",

year = "2026",

month = jan,

day = "12",

doi = "10.1136/bmjopen-2025-104407",

language = "English",

volume = "16",

journal = "BMJ Open",

issn = "2044-6055",

publisher = "BMJ Publishing Group",

number = "1",

}

Prout, H, Waldron, C-A, Gwilym, B, Thomas-Jones, E, Milosevic, S, Pallmann, P, Harris, D, Edwards, A, Twine, CP, Massey, I, Burton, J, Stewart, P, Jones, S, Cox, D, Bosanquet, DC, Brookes-Howell, L & PERCEIVE study group 2026, 'Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study', BMJ Open, vol. 16, no. 1, e104407. https://doi.org/10.1136/bmjopen-2025-104407

TY - JOUR

T1 - Challenges in shared decision-making about major lower limb amputation

T2 - the PERCEIVE qualitative study

AU - Prout, Hayley

AU - Waldron, Cherry-Ann

AU - Gwilym, Brenig

AU - Thomas-Jones, Emma

AU - Milosevic, Sarah

AU - Pallmann, Philip

AU - Harris, Debbie

AU - Edwards, Adrian

AU - Twine, Christopher P

AU - Massey, Ian

AU - Burton, Jo

AU - Stewart, Philippa

AU - Jones, Sian

AU - Cox, David

AU - Bosanquet, David C

AU - Brookes-Howell, Lucy

AU - PERCEIVE study group

PY - 2026/1/12

Y1 - 2026/1/12

N2 - Objectives:Shared decision-making is widely advocated in policy and practice, but how it is to be applied in a high-stakes clinical decision such as major lower limb amputation due to chronic limb-threatening ischaemia or diabetic foot is unclear. The aim of this study was to explore the communication, consent, risk prediction and decision-making process in relation to major lower limb amputation. Design:A qualitative study (done as part of a broader mixed-methods study) using semi-structured interviews. Interview transcriptions were analysed using thematic analysis. Setting:Vascular centres in three large National Health Service hospitals in Wales and England, UK, between 1 October 2020 and 30 September 2022. Participants:A purposive sample of 18 patients for whom major lower limb amputation was considered as a treatment option/carried out, with interviews conducted before or within 4 months of amputation and 4–6 months after amputation. A further purposive sample of 20 healthcare professionals (including eight surgeons) involved in supporting or conducting major lower limb amputation decision-making. Findings: Five major categories were identified that highlighted the challenges of ensuring shared decision-making associated with major lower limb amputation: (i) patients’ limited understanding, (ii) variable patient attitudes to decision-making, (iii) healthcare professionals’ perceived challenges to sharing decision-making, (iv) surgeons’ paternalism and (v) patients’ and healthcare professionals’ decisional regret/possible consequences of challenges. Conclusion:Amputation is a life-changing decision for both patients and healthcare professionals, with huge consequences. Despite being considered the gold standard, our findings highlight several challenges to effective shared decision-making for major lower limb amputation. Shared decision-making training for healthcare professionals is paramount if these limitations are to be addressed and patients are to feel confident in being adequately informed about the treatment decisions that they make. Trial registration number NCT04903756.

AB - Objectives:Shared decision-making is widely advocated in policy and practice, but how it is to be applied in a high-stakes clinical decision such as major lower limb amputation due to chronic limb-threatening ischaemia or diabetic foot is unclear. The aim of this study was to explore the communication, consent, risk prediction and decision-making process in relation to major lower limb amputation. Design:A qualitative study (done as part of a broader mixed-methods study) using semi-structured interviews. Interview transcriptions were analysed using thematic analysis. Setting:Vascular centres in three large National Health Service hospitals in Wales and England, UK, between 1 October 2020 and 30 September 2022. Participants:A purposive sample of 18 patients for whom major lower limb amputation was considered as a treatment option/carried out, with interviews conducted before or within 4 months of amputation and 4–6 months after amputation. A further purposive sample of 20 healthcare professionals (including eight surgeons) involved in supporting or conducting major lower limb amputation decision-making. Findings: Five major categories were identified that highlighted the challenges of ensuring shared decision-making associated with major lower limb amputation: (i) patients’ limited understanding, (ii) variable patient attitudes to decision-making, (iii) healthcare professionals’ perceived challenges to sharing decision-making, (iv) surgeons’ paternalism and (v) patients’ and healthcare professionals’ decisional regret/possible consequences of challenges. Conclusion:Amputation is a life-changing decision for both patients and healthcare professionals, with huge consequences. Despite being considered the gold standard, our findings highlight several challenges to effective shared decision-making for major lower limb amputation. Shared decision-making training for healthcare professionals is paramount if these limitations are to be addressed and patients are to feel confident in being adequately informed about the treatment decisions that they make. Trial registration number NCT04903756.

KW - Adult

KW - Aged

KW - Female

KW - Humans

KW - Male

KW - Middle Aged

KW - Amputation, Surgical/psychology

KW - Decision Making, Shared

KW - Diabetic Foot/surgery

KW - England

KW - Interviews as Topic

KW - Lower Extremity/surgery

KW - Patient Participation

KW - Qualitative Research

KW - Wales

U2 - 10.1136/bmjopen-2025-104407

DO - 10.1136/bmjopen-2025-104407

M3 - Article (Academic Journal)

C2 - 41526012

SN - 2044-6055

VL - 16

JO - BMJ Open

JF - BMJ Open

IS - 1

M1 - e104407

ER -

Challenges in shared decision-making about major lower limb amputation: the PERCEIVE qualitative study

Abstract

Bibliographical note

UN SDGs

Keywords

Access to Document

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