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

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.

Keywords:

• Motor neurone disease
• gastrostomy
• patient decision aid

Acknowledgements

We would like to thank all of our recruiting sites (Sheffield Teaching Hospitals NHS Foundation Trust; University Hospital Southampton; The Dudley Group NHS Foundation Trust; Marie Cure Hospice, West Midlands; University Hospitals Plymouth NHS Trust; Salford Royal NHS Foundation Trust; Salisbury NHS Foundation Trust; Southern Health NHS Foundation Trust), the plwMND, carers and healthcare professionals who took part in all phases of the development and evaluation of the decision aid, and Ruth Habibi for her support in putting together this manuscript. CM is supported by the NIHR Sheffield Biomedical Research Centre and an NIHR Research Professorship Award.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This work was supported by Marie Curie under Grant MCRGS-20171219-8005; and the Motor Neurone Disease Association under Grant 963-794.