Adult tube feeding at home

MNDA

BAPEN is committed to improving care for people receiving artificial nutrition support. As promised at their annual meeting in November 2019, we are asking you, adults on tube feeding at home, to complete this short questionnaire to see if you feel you have been given the support and on-going care that you need in order to manage your feeding tube with confidence.

The results of this survey will inform a 2020 work stream to ascertain if the NICE Quality Standards – Nutrition Support in Adults (2012) are being adhered to. The goal is to raise awareness amongst people on home enteral tube feeding as to what they can expect from healthcare organisations who are responsible for their nutritional care.

PINNT is a Core group of BAPEN, as such we work closely to fulfil the aims of the Association. We thank you for taking the time to complete the questionnaire.

Close: Tuesday 3rd March 2020 at 5pm

Question Title

* 1. Which type of enteral feeding tube do you currently have?

Percutaneous Endoscopic Gastrostomy (PEG) tube

Balloon Gastrostomy tube

Radiologically inserted gastrostomy tube (aka RIG)

Naso gastric (NG) tube

Naso jejunal (NJ) tube

Surgical jejunostomy (JEJ) tube

Radiologically inserted jejunostomy (JEJ) tube

Percutaneous inserted jejumostomy (JEJ) tube

Gastrostomy tube with jejunal extension (PEG-J)

Low profile balloon device

Low profile non balloon device

Other (please specify)

Question Title

* 2. Do you understand why you need this type of tube?

Yes

Question Title

* 3. Were you given a choice, along with support and time to make decisions regarding the type of tube you were going to have inserted?

Yes

Question Title

* 4. Prior to discharge were you taught the following:

	yes	no
What the common problems of tube feeding were?	What the common problems of tube feeding were? yes	What the common problems of tube feeding were? no
If yes, how to manage them?	If yes, how to manage them? yes	If yes, how to manage them? no
If yes, who to contact if you are unable to sort it/them out on your own?	If yes, who to contact if you are unable to sort it/them out on your own? yes	If yes, who to contact if you are unable to sort it/them out on your own? no

Would you like to add any comments on the above

Question Title

* 5. Prior to discharge, were you given the opportunity to discuss any concerns, questions or issues you had during discussions and consultations?

Yes

Any Comments

Question Title

* 6. Prior to discharge, if you raised any concerns, questions or issues did you feel they were addressed?

Yes

Any Comments

Question Title

* 7. Did you feel that you were given enough time and support to make the decisions?

Yes

Any Comments

Question Title

* 8. Did you feel you were given adequate support and training to manage your feeding tube?

Yes

Question Title

* 9. Was it made clear to you that if your situation or feelings changed at any point prior and following your tube placement, that you would have the opportunity to re-dicuss your options?

Yes

Any Comments

Question Title

* 10. Do you feel your personal wellbeing is supported?

Yes

Any Comments

Question Title

* 11. Now you are at home, where do you gain medical support from:

Your hospital

Your GP

Local support network, community team

Fellow patients/carers

Social media

Other or if more than one (please advise)

Question Title

* 12. Do you know who to contact if you experience delivery issues with your fluids and ancillaries (equipment)?

Yes

Question Title

* 13. Homecare - please respond to each of the following:

	yes	no
Do you feel competent in managing your nutrition delivery equipment	Do you feel competent in managing your nutrition delivery equipment yes	Do you feel competent in managing your nutrition delivery equipment no
Do you know how to store the feed in an appropriate environment	Do you know how to store the feed in an appropriate environment yes	Do you know how to store the feed in an appropriate environment no
Do you know what to do if you had technical issues with your pump	Do you know what to do if you had technical issues with your pump yes	Do you know what to do if you had technical issues with your pump no

Would you like to add any comments on the above

Question Title

* 14. Do you receive a regular clinical review?

Yes - please answer Q15

No - please go to Q16

Question Title

* 15. How often do you attend for a review appointment:

3-monthly

6-monthly

Annually

Other (please specify)

Question Title

* 16. Are you aware of the NICE Quality Standards for England, Nutrition support in adults? (QS24)

Yes

Thank you for taking the time to complete the survey.