Development and validation of a specific questionnaire to assess health-related quality of life in patients with home enteral nutrition: NutriQoL^® development

Figures & data

Figure 1 The NutriQoL^® study diagram.

Note: Phase 1 questionnaire development.

Table 1 Main dimensions of HRQoL in patients with HEN

Dimension	Characteristics
HEN administration	Administration frequency
	Device (technology) used during the product administration
	Product presentation
	Administration route
	Administration time
	Product organoleptic characteristic
Intake to HEN	Nausea and vomiting
	Flatulence
	Diarrhea
	Constipation
	Dyspnea (depends on the administration route)
	Insomnia
	Pain
	Thirst
	Pyrosis
	Dry mouth and throat
	Loss of appetite
	Feeling hungry
Psychological aspects	Self-esteem
	Sleep
	Body image
	Depression/anxiety
	Pleasure with the act of eating
	Food self-sufficiency
	Confidence about food administration skills
Activities of daily living	Personal hygiene
	Getting dressed
	Housekeeping
	Performing leisure activities
	Performing sports activities
Social life	Visiting friends
	Relationship with strangers
	Maintaining social role
	Traveling
Family	Family role
	Dependence on relatives to eat
	Sexual activities
	Participation in family activities
Employment and working life	Limitations for performing
	Job loss
	Change of job

Abbreviations: HRQoL, health-related quality of life; HEN, home enteral nutrition.

Table 2 Questionnaire items

Item	Never–sometimes–always	Not important at all–important–very important
1a	With HEN, I can maintain my usual meal times (eg, breakfast, lunch, dinner, supper)	For me, maintaining my usual meal times is:
2a	HEN adapts to my preferences for food characteristics (eg, texture, color, smell, temperature, taste)	For me, the fact that HEN adapts to my preferences for food
3a	Since I have been receiving HEN, it is easier for me to move, and I feel more agile	For me, being able to move more easily and feeling more agile is:
4a	With HEN, I can continue doing my daily tasks (eg, read the newspaper, cook, wash the car, clean, watch TV)	For me, being able to continue doing my daily tasks is:
5a	Since I have been receiving HEN, I perceive that my physical aspect is improving (eg, I see myself as healthier)	For me, perceiving that I am looking better, physically, is:
6a	I can easily obtain HEN preparations (eg, they are available in pharmacies, It is easy for me to get a prescription)	For me, being able to obtain HEN preparations easily is:
7a	With HEN, I feel that I am well nourished	For me, feeling that I am well nourished is:
8a	With HEN, I have gained weight	For me, gaining weight is:
9b	HEN allows me to go out with my friends	For me, being able to go out with my friends is:
10a	HEN harms my skin (eg, dryness, irritation, infections)	For me, harming my skin is:
11a	HEN prevents me from sleeping well	For me, sleeping well is:
12a	back to feeding as before	For me, the possibility of my body adapting to HEN and not being able to go back to feeding as before is:
13a	With HEN, I miss chewing and savoring food	For me, chewing and savoring is:
14a	With HEN, I experience physical discomfort due to feeding (eg, feeling stomach heaviness, mouth dryness, acid reflux, regurgitation)	For me, experiencing physical discomfort due to feeding is:
15a	With HEN, my family keeps a closer watch over my nutrition	For me, the fact that my family keeps a closer watch over my nutrition is:
16b	With HEN, I limit my activities with my friends to those not related to eating	For me, limiting my activities with my friends to those not related to eating is:
17b	Since I have been receiving HEN, I am more concerned about my health	For me, being more concerned about my health is:

Notes:

a Physical functioning and activities of daily living dimension.

b Social life aspects dimension.

Abbreviation: HEN, home enteral nutrition.

Table 3 Questionnaire item scoring

Type of item	Scoring
Part “a” with positive sense	Never =−1	Sometimes =0	Always =1
Part “a” with negative sense	Never =1	Sometimes =0	Always =−1
Part “b” with both positive and negative sense	Not important =1	Somehow important =2	Very important =3

Table 4 The NutriQoL^® overall score and HRQoL interpretation

NutriQoL^® score	HRQoL interpretation
Between −51 and −30	Very bad
Between −29 and −11	Bad
Between −10 and +10	Regular
Between +11 and +31	Good
Between +32 and +51	Very good

Abbreviation: HRQoL, health-related quality of life.