Pain symptomology, functional impact, and treatment of people with Neurofibromatosis type 1

Figures & data

Table 1 Demographics and medical background of Neurofibromatosis type 1 subjects

Demographics	N (%)
Gender
Male	70 (27)
Female	155 (61)
Transgender	3 (1)
Age, Mean (SD)	43.2 (8.4)
Ethnicity
Caucasian	205 (80)
African American	6 (2)
Hispanic	7 (2)
Asian	13 (5)
Native American	14 (5)
Other	10 (4)
Marital Status
Married	105 (41)
Single	96 (38)
Remarried	1 (1)
Widowed	6 (2)
Separated	1 (1)
Divorced	21 (8)
Education
High School or Less	53 (22)
Some of College	48 (20)
Associates/Technical Degree	44 (18)
College Degree	58 (24)
Advanced Degree	40 (16)
Age of Diagnosis, Mean (SD)	11.9 (12.1)
Medical Issues
Seizures	16 (6)
Migraines	114 (45)
Scoliosis	15 (6)
High Blood Pressure	9 (4)
Body Parts Affected
Head	162 (64)
Chest	164 (65)
Face	135 (53)
Back	131 (53)
Arms	177 (70)
Hands	143 (56)
Torso	156 (61)
Pelvis	91 (36)
Type of Tumor
Dermal Neurofibromas	176 (70)
Plexiform Neurofibromas	17 (7)
Multiple Peripheral Nerve Sheath Tumors	6 (2)
Neurofibromas	14 (5)
Don’t Know	22 (9)

Note: Due to missing data, all percentages may not add up to 100%.

Table 2 Medications or substances to reduce pain symptoms

	Treatments attempted, N (%)
	In the last 3 months	Lifetime
Cigarette usage	45 (20)	100 (39)
Alcohol usage	30 (12)	82 (32)
Marijuana	32 (13)	81 (32)
Cocaine	0 (0)	1 (0)
Inhalants	0 (0)	0 (0)
Hallucinogens	0 (0)	0 (0)
Heroin	0 (0)	0 (0)
OTC pain relief	130 (51)	181 (71)
GABA analogue	68 (27)	150 (59)
Benzodiazepines	26 (10)	74 (29)
Prescription opioids	43 (17)	139 (55)

Table 3 Complementary treatments usage

Treatments	Treatments attempted, N (%)
	In the last 3 months	Lifetime
Physical Exercise*	97 (38)	154 (60)
Chiropractor	15 (6)	91 (36)
Acupuncture*	5 (1)	70 (27)
Counseling/Therapy*	9 (4)	56 (22)
Yoga*	22 (9)	57 (22)
Physical therapy*	26 (10)	95 (37)
Meditation/Mindfulness*	38 (15)	50 (21)
Occupational therapy*	5 (2)	58 (22)
Supplemental vitamins	49 (19)	107 (42)
Self-help group	26 (10)	105 (41)
Hypnosis	6 (2)	51 (20)
Cold therapy	41 (16)	75 (29)
Prayer	58 (23)	97 (38)
Heat therapy	54 (24)	78 (31)
Transcutaneous electrical nerve stimulation unit	25 (10)	51 (20)

Note: *Indicates the current treatment has been shown to evidenced based for chronic pain.