Development of 'gastrostomy tube - is it for me?', a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed

S Wheelwright*, R Maunsell, S Taylor, N Drinkwater, C Erridge, C Foster, M Hardcastle, A Hogden, I Lawson, D Lisiecka, C Mcdermott, K E Morrison, C Muir, A Recio-Saucedo, S White

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

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Abstract

Objective: To develop and pilot a web-based patient decision aid (PDA) to support people living with motor neurone disease (plwMND) considering having a gastrostomy tube placed. Methods: In Phase 1, content and design were informed by semi-structured interviews, literature reviews and a prioritization survey. In Phase 2, the prototype PDA was tested with users and developed iteratively with feedback from surveys and ‘think-aloud’ interviews. Phase 1 and 2 participants were plwMND, carers and healthcare professionals (HCPs). In Phase 3, the PDA was evaluated by plwMND using validated questionnaires and HCPs provided feedback in focus groups. Results: Sixteen plwMND, 16 carers and 25 HCPs took part in Phases 1 and 2. Interviews and the literature review informed a prioritization survey with 82 content items. Seventy-seven per cent (63/82) of the content of the PDA was retained. A prototype PDA, which conforms to international standards, was produced and improved during Phase 2. In Phase 3, 17 plwMND completed questionnaires after using the PDA. Most plwMND (94%) found the PDA completely acceptable and would recommend it to others in their position, 88% had no decisional conflict, 82% were well prepared and 100% were satisfied with their decision-making. Seventeen HCPs provided positive feedback and suggestions for use in clinical practice. Conclusion: Gastrostomy Tube: Is it for me? was co-produced with stakeholders and found to be acceptable, practical and useful. Freely available from the MND Association website, the PDA is a valuable tool to support the shared decision-making process for gastrostomy tube placement.
Original languageEnglish
Pages (from-to)605-613
Number of pages9
JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Volume24
Issue number7-8
DOIs
Publication statusPublished - 18 Jun 2023

Keywords

  • patient decision aid
  • Motor neurone disease
  • gastrostomy

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