The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management

Figures & data

Table 1. Example from the analytic process of condensation and gradual abstraction.

Quotation	Code	Subcategory	Category	Theme
”Sometimes I sit up and try to stretch a little and then I am able to go back to sleep” (14).	Straighten out muscles during the night	Physical activities and movements	Strategies to endure pain	Successful coping with pain requiring personal effort and competent engagement.

Table 2. Participant characteristics.

Partici-pant	Gender	Age	Family situation	Occupational status	Diag-nose	Time since first symp-tom of disease, year	Physical function^dALSFS-R total score	Worst pain^eBPI-SF	Least pain^eBPI-SF	Ave-rage pain,^eBPI-SF	^fPSI	^gPII (“walk” and “work” excluded)
1	Female	66	Married/cohabitant	Retired	^cPLS	12	34	7	0	5	4.3 (moderate)	5.1 (4.6)
2	Male	66	Married/cohabitant	Retired	^bMND	1.3	26	10	0	5	5.7 (moderate)	5.6 (6.2)
3	Male	58	Married/cohabitant	Working part-time	^aALS	1	32	9	0	0	3 (mild)	6 (4)
4	Female	66	Married/cohabitant	Retired	^aALS	2	23	4	0	3	3 (mild)	0.7 (1)
5	Female	58	Married/cohabitant	Working part-time	^aALS	3	33	5	3	3	3.7 (moderate)	4.7 (5.8)
6	Male	55	Married/cohabitant	Working full-time	^bMND	4	34	9	1	1	3.7 (moderate)	5.4 (4)
7	Female	61	Single	Sickness benefit	^aALS	1	17	7	1	5	4.3 (moderate)	3.1 (4.4)
8	Male	72	Married/cohabitant	Retired	^cPLS	30.1	34	5	0	2	2.3 (mild)	2.7 (2)
9	Male	71	Single	Retired	^bMND	2	35	7	0	2	3 (mild)	1.9 (2.6)
10	Male	48	Married/cohabitant	Working full-time	^aALS	3.1	37	10	0	2	4 (moderate)	4 (4.6)
11	Female	50	Single parent	Sickness benefit	^aALS	1.6	27	8	2	6	6.7 (severe)	5.4 (5.6)
12	Male	60	Married/cohabitant	Sickness benefit	^bMND	6	37	8	5	5	6.3 (moderate)	5.7 (6.4)
13	Male	71	Married/cohabitant	Retired	^bMND	5	43	4	0	4	3.3 (mild)	2.1 (2.6)
14	Male	47	Married/cohabitant	Working part-time	^aALS	0.4	32	8	0	4	4 (moderate)	5 (6)
15	Male	60	Married/cohabitant	Working part-time	^bMND	5	37	9	0	4	7 (severe)	2.7 (2.4)
16	Male	47	Married/cohabitant	Sickness benefit	^bMND	5	39	4	1	2	2.3 (mild)	2.7 (3.4)

^a Amyotrophic Lateral Sclerosis with both upper and lower motor neuron signs and symptoms that were not further classified into the specific El Escorial categories.

^b Motor Neuron Disease with lower motor neuron signs and symptoms but were not further classified into the specific El Escorial Categories.

^c Primary Lateral Sclerosis with only upper motor neuron signs and symptoms.

^d Amyotrophic Lateral Sclerosis Functional Rating Scale Revised version, a 12-item scale, which assesses the level of function in the five domains of speech, swallowing, fine motor function, gross motor function and breathing. 0 = total loss , 4 = normal function. Total score of maximum 48.

^e Brief Pain Inventory Short Form. Worst, least and average perceived pain intensity in the last 24 h. 0 = no pain, 10 = pain as bad as you can imagine.

^f Pain Severity Index is the average of the three BPI-SF items worst, average and current pain at the time of the interview. ‘‘No/mild” (0–3), ‘‘moderate” (4–6) and ‘‘severe” (7–10).

^g The Pain Interference Index is the average of the seven BPI-SF items on interference of pain with daily functions. 0: no interference; 10: interferes completely.

Table 3. Overview of themes, categories, subcategories and examples of quotations.

Theme	Category	Subcategory	Quotation
The multiple faces of pain	Multiplicity of pain perceptions	Multiplicity of pain characteristics and areas	“It itches a lot and especially in my eyes, and then it also hurt” (3).
		Pain is inconstant during days and nights	“…it happens every other night” (10).
		Pain alters over the course of disease	“It began two-and-a-half years ago and there was more pain then” (9).
The thin line between experience of pain and no pain	Exacerbation of pain	Physical strain	”I also have pain in my knee joint because I overstretch it” (8).
		Immobility	”I have felt pain when I lie very still at night” (13).
		Non-adapted equipment causes discomfort	“When I’m sitting and leaning against the backrest, just where the backrest meets my back…that is where it hurts” (15).
		Worrying has a negative impact	“Sometimes I’ve maybe felt a gastric ulcer because of my worries about the future. There must be a connection. That’s what I think” (2).
		Sense of bodily exhaustion	”My body is exhausted by the late afternoon/evening and I have screaming pain” (15).
		Physical touch is uncomfortable	“…massaging a little bit to make it better, but it gets even worse” (16).
The negative effects of pain on role functioning	Pain restricts physical function		“The pain itself makes you feel weaker. You lose your strength when it hurts” (16).
	Pain impacts activities of daily living		It is hard to move the head because it hurts in the neck in certain positions, especially when I eat. I need to think, because otherwise it gets even worse” (2).
	Pain restricts autonomy		“I can’t buy groceries by myself. I get pain when picking up groceries” (11).
	Pain impairs sleep quality		”When I sleep, I frequently wake up because of pain” (9).
	Pain creates powerlessness		”You know, I get fed up and give up; I can’t keep asking other people about things that I can’t do myself” (12).
	Pain produces a bad mood		“But now it’s getting to where it affects my mood. You get a little touchy when it hurts; you get in a bad mood” (8).
	Pain causes fear and anxiety		“It could press a little at the chest, here at the side, when I get dyspnea and it has developed. Then you get worried. Is it going to increase?” (4).
	Pain complicates fellowship and social life		“At five or six in the evening, or just after I’ve eaten or something, I’m not able to sit up anymore. My body is just screaming. That makes it hard to have a social life” (15).
Successful coping with pain requiring personal effort and competent engagement.	Strategies to endure pain	Physical activities and movements	”Sometimes I sit up and try to stretch a bit and then after that, I am able to go to sleep again” (14).
		Reduced exertion	”If that aching pain starts, then I have to rest; I have to lie down” (12).
		Modifying tasks to avoid pain	“…shave myself and go on for a while, then I get cramps here and there and have to change hands” (2).
		Adapted medication	”Now I take one pill three times a day but it’s not enough” (11).
		Sensory stimulation	“If I managed to prevent the cramp by pressing on it or lying in a certain position” (6).
		Individualised equipment	“I’ll also try the orthosis I got from the occupational therapist. Maybe it’ll provide relief” (3).
		Acceptance of pain	“I don’t know what to do, so I just have to accept it” (9).
		Competent and available support and advice	“I need to talk about some of them to find out what they are. It depends on whether you can do something about it, like this with the eyes. At home, if I have pain, I ask if I can take a tablet or whether it will disappear” (3).