A qualitative exploration of living with chronic neuropathic pain after spinal cord injury: an Italian perspective

Figures & data

Table 1. Topic guide.

Questions	Potential probes
How does your pain affect your everyday life?	→ Sleeping→ Fatigue→ Relationships→ Work
What do you know about CNP?	→ What is it for you?→ How did you get the information you know?
How do you manage your pain? What makes it worse, what makes it better?	→ Drugs: - Access - Helpful-always effective - Follow medical prescription - Self-medication - How do you deal with the quantity and the frequency? - Have you ever stopped by yourself? - Side effects?→ Sleeping tablets→ Other strategies: - What do you use/do? Acupuncture, exercise, massage, etc. - How did you find out about them? - Where did you go to find out about pain, help, management?→ How long is the relief? - How does it help?
Is there anything else that you think would help you living with this sort of pain in your day-to-day life?	→ Something that might have helped you that you weren't offered, or did not have access to?→ Was there anything that was provided that you think was not necessary or that didn't help you in the day-to-day management of your condition?

Table 2. Participant and pain characteristics.

Participant	Silvio FG1	Bruno FG1	Laura FG1	Marco FG 2	Alberto FG2	Carlo FG2	Omar FG2	Davide interview	Sara e-mail
Age	75	51	32	35	38	72	64	52	66
Gender	M	M	F	M	M	M	M	M	F
Occupation	Retired	Unemployed	Teacher	Qualified employed	Employed	Retired	Freelance	Employed	Retired
Marital status	M	D	U	U	U	M	D	M	M
Level of injury	T4-T6 ASIA B	L2-L3 ASIA C	L5 ASIA D	T6-T7 ASIA A	T8-T10 ASIA A	T10-T12	L3-S1 ASIA D	C6-C7 ASIA D	C5-C6 ASIA A
Time since injury (years)	4	32	2	3	8	3	2	8	10
First pain onset	2010	1981	2011	2010	2005	2010	2011	2013	2005
Pain distribution	Perineal area	Left hallux, external sides of feet	Right foot	Perineum, pelvis, abdomen, legs	Back, abdomen, left side of last rib	Abdomen	Both knees	Spine, abdomen, pelvis, legs	Thorax, abdomen, spine, pelvis, legs
Characteristics of pain	Burning	Pins and needles, stabbing, compression, hammered, twisting	Electric like pains	Burning, heaviness, pins and needles, evacuation sensation	Compression, stabbing, pins and needles	Compression	Burning, pumping	Burning, contusion, tingling allodynia	Compression, contraction, electric like pain, needles, burning
Last day of pain	Day of interview	Day of interview	2 weeks before	Day before interview	Everyday	Everyday	Everyday	Everyday	Everyday
Number of days with pain in a week	6	7	1	5	7	7	7	7	7
Number of hours with pain in a day	9	24	6-7 (at night)	24	24	24 (worse at night)	24	24	5
Max pain level 0-10	7	10	8	9	9	6	8	7	8
Min pain level 0-10	4	2	0	1	4	3	4	2	3
Medication used	Lyrica (Pregabalin), Contramal (Tramadol)	Lyrica (Pregabalin), Citalopram, Oxicontin (Oxy codone), Lansopraxalo, Hiacion, intrathecal Prialt (Ziconotide), Morfina (Morphine), Toradol (Ketorolac), Diclofenac	None	None	Lyrica (Pregabalin)	Lyrica (Pregabalin), Contramal (Tramadol)	Gabapentin	None	Lyrica (Pregabalin), Clonazepam

M: married; D: divorced; U, not married. Maximum and minimum pain rated by using a 0–10 numerical rating scale where 0: no pain and 10: worse pain imaginable.

Table 3. Positive/helpful and negative/unhelpful interventions and strategies.

Interventions and strategies found to be positive/helpful		Interventions and strategies found to be negative/unhelpful
Acupuncture	Being understood	Acupuncture
Sleeping tablets	Reading specialized information	Meeting with specialist pain consultant
Anti-pain drugs	Going out and social relationships	Being only focused on drugs
Lying down	Information from the Internet	Information from the Internet
Massage	Being distracted	Concentrating on pain
Tactile stimulation	Work in a non-stressful environment	TENS
Physical movement	Being busy	Massage
Gentle movements of the trunk	Going on holiday to hot places	Stopping medication
Stretching	Working on thoughts	Taking drugs
Prone position	Accepting pain	Intense physical activity
Diet	Sharing experiences	Swimming
Sport	Being positive	Maintaining still positions
Standing after eating	Hypnosis	Cannabis
Cannabis	Meditation	Inadequate information (quality and quantity)
Complementary therapies	Relaxation