Head and neck cancer patients’ perceptions of quality of life and how it is affected by the disease and enteral tube feeding during treatment

Figures & data

Table I. Demographic and clinical characteristics of patients with head and neck cancer (n = 41).

Characteristic	Number of patients (%)
Sex
Male	28 (68)
Female	13 (32)
Age
Mean age, years	62.3
30–39 years	1 (3)
40–49 years	3 (7)
50–59 years	10 (24)
60–69 years	18 (44)
70–79 years	7 (17)
80–89 years	2 (5)
Marital status
Married, cohabiting	31 (76)
Single, divorced, or widowed	10 (24)
Educational status (highest level)
Mandatory	13 (32)
High school/college	12 (29)
University	13 (32)
Other	3 (7)
Diagnosis
Oropharynx	15 (37)
Oral cavity	8 (20)
Larynx	5 (12)
Unknown primary	4 (10)
Nasopharynx	3 (7)
Salivary glands	3 (7)
Hypopharynx	2 (5)
Oral cavity and oropharynx	1 (2)
Tumour stage (I–IV)
I	6 (14)
II	5 (12)
III	4 (10)
IV	22 (54)
No stage	4 (10)
Treatment
Radiotherapy	16 (39)
Radiotherapy and surgery	9 (22)
Surgery and radiotherapy	3 (7)
Combination treatment^a	13 (32)

^aRadiotherapy and chemotherapy, and/or brachytherapy, and sometimes surgery.

Table II. Categories of most important areas in life (SEIQoL-G) found from interviews of patients with head and neck cancer over time: at start of radiotherapy (T1), 2 weeks (T2) and 3 months (T3) after the termination of radiotherapy, divided into two groups–oral feeding (OF) and enteral nutrition (EN). Numbers and percentages show frequencies of nominations in each category.

	T1^a	T2^b		T3^b
Main categories	n (%)	OF n (%)	EN n (%)	OF n (%)	EN n (%)
Total number of participants	41	17	21	18	18
Family/relation to family	35 (85)	10 (59	16 (76)	11 (61)	15 (83)
Own health	18 (44)	9 (53)	11 (52)	8 (44)	14 (78)
Interest/leisure activities	30 (73)	7 (41)	5 (24)	7 (39)	6 (33)
Friends/relations to other people	19 (46)	6 (35)	8 (38)	6 (33)	6 (33)
Work	18 (44)	6 (35)	4 (19)	5 (28)	6 (33)
Housing/living conditions	17 (41)	3 (18)	1 (5)	9 (50)^c	3 (17)^c
Psychological impact	3 (7)	2 (12)	4 (19)	1 (6)	4 (22)
Finances	6 (15)	1 (6)	0 (0)	2 (11)	0 (0)
Pets	3 (7)	1 (6)	1 (5)	2 (11)	1 (6)
Health of someone close	2 (5)	1 (6)	0 (0)	2 (11)	0 (0)
Environment	1 (2)	0 (0)	1 (5)	0 (0)	0 (0)
Society/politics	1 (2)	1 (6)	0 (0)	0 (0)	0 (0)
Religion/spirituality	1 (2)	0 (0)	0 (0)	0 (0)	0 (0)

^aAt T1, 4/41 had EN.

^bThere were no differences between the OF and EN groups (Fisher’s exact test).

^cExcept for statements regarding housing/living conditions where a statistically significant difference was seen at T3 (Fisher’s exact test).

Table III. Examples of quotes describing the different categories influenced by the disease (SEIQoL-DR) as reported by patients with head and neck cancer (n = 41).

Main categories	Sub-categories	n	Examples of quotes
Negative aspects
Health aspects:
Symptoms	Fatigue/loss of energy	24	I’m not recovering in the way I expected. I’m getting impatient. It affects my daily life–cleaning the house, and so on, is difficult. I’m tired both psychologically and physiologically. I get tired when I’m walking.
	Pain	20	It hurts inside my mouth and throat, and the skin on my neck also hurts.
	Xerostomia	14	My mouth is very dry because of the radiotherapy.
	Skin/mucous impairment	10	I’m sore in my mouth as I’ve got blisters, and the skin on my neck is red and itchy.
	Viscous phlegm	6	I have problems with stiff, viscous phlegm.
	Loss of hair	3	I have hair loss around my ears after the radiotherapy treatment.
	Function restrictions	Psychological impact	18	I’m psychologically affected and I feel worried. I feel slightly depressed sometimes.
Sleeping problems		11	I have sleeping problems and I wake up many times during the night. It’s hard to fall asleep again.
Speaking problems		6	I’m wheezing, have hoarseness, my voice is affected, and mainly in the morning I’ve got lots of viscous phlegm.
Hearing problems		4	After treatment, my hearing capacity is reduced in my right ear.
Tooth extraction		4	It’s been horrible to take out good teeth before treatment.
Altered body appearance		3	My face looks different and I feel strange.
Impact on sexual life		2	I don’t have a normal sex life.
Nutrition		Eating problems/ dysphagia	20	I’ve got problems with chewing and swallowing food.
	Eating habits/taste changes	14	I have no taste. I’m eating normal food again but feel it is boring when there is no taste, except for sometimes the first bite having taste.
	Loss of appetite	9	I have problems with my appetite.
	Enteral nutrition	5	I’m bored with enteral food. I really wish I could eat normal food.
	Losing weight	5	I haven’t been able to eat, and have lost between 10 and 12 kg. I’m pleased with my weight reduction.
	Social restrictions	Social life	14	Restrictions in my social life, especially in contacts with other people and friends.
Family life		13	I’m worried about my family–what they think about the situation.
Work/financial		13	My economy is affected because of the cancer. The money I get when I am sick doesn’t cover our expenses, I have to take from our savings and it affects the whole family. We can’t do fun things with the children that are costly.
Thoughts about disease			22	My whole life is affected by the cancer. I’m thinking about it all the time, even though I’m trying not to.
Treatment-related concerns		17	The disease changes your entire life. My life is now about treatment, the intake of calories, and killing time in between. It’s a full-time job.
Opinions on health care		9	The rehabilitation has taken much longer than what they said it would take, and I am surprised over the fact of having 12 meetings with 9 doctors during my radiotherapy treatment. Insufficient information about side-effects and that everything takes such a long time. Also, the appointments with different doctors each time is so frustrating.
Positive aspects
Social improvements	Family life	8	My wife and daughter are very engaged in my situation.
	Social life	8	People–friends and relatives have been in contact with me. They care.
View of life and oneself		11	I’m living in the present and trying to enjoy life (e.g. the spring, flowers, and grandchildren).
Thoughts about disease and treatment		11	I’m very happy and at ease now since I’ve talked to the doctor who told me the cancer is cured.
Opinions on health care		9	A good continuity of the nurses. Both the staff and doctors have been answering my questions.
Miscellaneous		5	Smoking is both positive and negative. I don’t want to quit.

Table IV. Categories of areas influenced by the disease (SEIQoL-DR) found from interviews of patients with head and neck cancer over time: at start of radiotherapy (T1), 2 weeks (T2) and 3 months (T3) after the termination of radiotherapy, divided into two groups–oral feeding (OF) and enteral nutrition (EN). Numbers and percentages show frequencies of nominations in each category.

	T1^a	T2^b		T3^b
Main categories	n (%)	OF n (%)	EN n (%)	OF n (%)	EN n (%)
Total number of participants	41	17	21	18	18
Negative aspects
Health aspects	30 (73)	15 (88)	17 (81)	14 (78)	16 (89)
Social restrictions	19 (46)	5 (29)	4 (19)	4 (22)	5 (28)
Thoughts about disease	15 (37)	6 (35)	4 (19)	6 (33)	3 (17)
Treatment-related concerns	9 (22)	5 (29)	4 (17)	1 (6)	0 (0)
Opinions on health care	0 (0)	2 (12)	2 (10)	3 (17)	2 (11)
Positive aspects
Social improvements	10 (24)	0 (0)	2 (10)	2 (11)	1 (6)
View of life and oneself	5 (12)	0 (0)	4 (19)	3 (17)	1 (6)
Thoughts about disease and treatment	1 (2)	2 (12)	3 (14)	4 (22)	2 (11)
Opinions on health care	2 (5)	1 (6)	2 (10)	3 (17)	1 (6)
Miscellaneous	2 (5)	0 (0)	1 (5)	2 (11)	0 (0)

^aAt T1, 4/41 had EN.

^bThere were no statistically significant differences between the OF and EN groups (Fisher’s exact test).

Table V. Category descriptions and examples of quotes found from interviews (SEIQoL-EN) of patients with head and neck cancer receiving enteral nutrition by either the polyurethane nasogastric feeding tube (NGT) or the percutaneous endoscopic gastrostomy (PEG) tube. Numbers and percentages show frequencies of nominations in each category.

			Number of patients (%)
Main categories	Sub-categories	Examples of codes	NGT (n = 9)	PEG (n = 14)	p value^a
Nutrition	Nutritional comfort	It is positive. I do not have to panic about meals. I get nutrition without having to worry about not being able to swallow	6 (67)	13 (93)	0.26
	Maintaining and gaining weight	Positive as I realize that I would have lost weight without it	4 (44)	5 (36)	1.00
	Long feeding time	It takes lots of time. To take all three bags in one day is hard to manage	3 (30)	6 (43)	1.00
	Missing oral eating	I cannot eat. I miss eating orally. It is hard. I cannot chew	3 (30)	4 (29)	1.00
	Losing weight	It is hard to maintain my weight	0 (0)	2 (14)	0.50
	Function	Functioning well	I have learned to live with tube feeding	5 (56)	9 (64)	1.00
Difficult to handle		Practically, it is difficult to handle the tube, the syringe, and tube feeding	2 (22)	4 (29)	1.00
Gastrointestinal problems		I easily feel nauseous in connection to tube feeding	4 (44)	2 (14)	0.16
Nose and throat problems		My nose feels irritated by the NGT	2 (22)	1 (7)	0.54
Pain		It hurts around the PEG tube	0 (0)	5 (36)	0.12
Limitations		Feel unhygienic	I feel unhygienic–it smells bad	1 (11)	6 (43)	0.18
	Confined to a tube	It is negative because the tube is in the way. The tube disturbs my sleep. I feel confined to the tube when feeding	1 (11)	8 (57)	<0.05
	Social limitations	I feel embarrassed to have the NGT in my nose	6 (67)	1 (7)	<0.01
	Miscellaneous		I only use the PEG in the mornings, so I am hoping to get rid of it soon	0 (0)	4 (29)	0.13

^aFisher’s exact test.