Patient-reported outcomes in head and neck cancer: prospective multi-institutional patient-reported toxicity

Figures & data

Table 1 Head and neck cancer survivor survivorship care plan demographic information

Characteristic	Total survivors (N=602)
Sex, n (%)
Male	208 (34.6)
Female	394 (65.4)
Current age, median years	57
Age at diagnosis, median years	55
Time since diagnosis, median years	2
Race, n (%)
African American	39 (6.5)
Asian	23 (3.8)
Caucasian	519 (86.2)
Hispanic/Latino	9 (1.5)
Mixed race	2 (0.3)
No response	2 (0.3)
Other	8 (1.3)
Living location type, n (%)
Rural	121 (20.1)
Suburban	240 (39.9)
Urban	156 (25.9)
No response	85 (14.1)
Education, n (%)
Grade School	16 (2.7)
High School	133 (22.1)
Some College	141 (23.4)
College Degree	124 (20.6)
Graduate School	86 (14.3)
Don’t know	102 (16.9)
Treatment location type, n (%)
Private doctor	44 (7.3)
Non-University	215 (35.7)
University	203 (33.7)
Combination	55 (9.1)
No response	85 (14.1)
Cancer center proximity, n (%)
Less than 20 miles	302 (50.2)
Greater than 20 miles	215 (35.7)
No response	85 (14.1)
Offered survivorship care plan, n (%)
Yes	63 (10.5)
No	469 (77.9)
I don’t know	70 (11.6)
Survivorship personnel, n (%)
Self	573 (94.8)
Family member/friend	1 (0.2)
Health care provider completing plan with patient	30 (5.0)

Note: Percentages may not sum to 100.0% because of rounding.

Table 2 Head and neck cancer survivor survivorship care plan treatment modality information

Treatment modality	Total survivors (N=602)
Surgery, n (%)
Yes	362 (60.1)
No	240 (39.9)
Radiation, n (%)
Yes	506 (93.0)
No	42 (7.0)
Chemotherapy, n (%)
Yes	423 (70.3)
No	179 (29.7)

Note: Percentages may not sum to 100.0% because of rounding.

Figure 1 The number of patients reporting various systems of toxicities in decreasing order including oropharyngeal (green), skin/hair/nail (yellow), global (orange), orthopedic (purple), eyes/ears (plum), other site (grey), endocrine (teal), kidney (red), and secondary cancer (black).

Note: Global includes fatigue, weakness, hypertension, and hyperlipidemia.

Table 3 Head and neck cancer survivor survivorship care plan toxicity information

Side effect/diagnosis	Total survivors (N=602)
Loss of strength or paralysis in the arms and/or legs, n (%)
Yes	93 (15.4)
No	509 (84.6)
Inability to move your neck in all directions, n (%)
Yes	101 (16.8)
No	501 (83.2)
Diagnosis of lymphedema (swelling of the area below where the lymph node(s) were removed), n (%)
Yes	47 (7.8)
No	555 (92.2)
Pain, numbness or tingling in the arm or leg below/adjacent to the area where the lymph nodes were removed, n (%)
Yes	43 (7.1)
No	559 (92.9)
Developed decreased hearing, ringing in the ears or vertigo, n (%)
Yes	191 (31.7)
No	411 (68.3)
Have persistent numbness and tingling in the hands and/or feet, n (%)
Yes	71 (11.8)
No	531 (88.2)
Chronic changes to your nails or skin color, n (%)
Yes	13 (2.2)
No	589 (97.8)
Diagnosed with kidney problems, n (%)
Yes	23 (3.8)
No	579 (96.2)
Decrease or loss of saliva production, n (%)
Yes	209 (34.7)
No	393 (65.3)
Dental problems (including tooth decay or loss of teeth), n (%)
Yes	161 (26.7)
No	441 (73.3)
Osteoradionecrosis of the jaw, n (%)
Yes	40 (6.6)
No	562 (93.4)
Difficulty with swallowing, speaking or breathing, n (%)
Yes	370 (61.5)
No	232 (38.5)
Chronic sinusitis
Yes	59 (9.8)
No	543 (90.2)
Loss or decrease of tear production, n (%)
Yes	35 (5.8)
No	567 (94.2)
Partial loss of vision or blindness, n (%)
Yes	25 (4.2)
No	577 (95.8)
Developed cataracts, n (%)
Yes	21 (3.5)
No	581 (96.5)
Developed other eye problems, n (%)
Yes	41(6.8)
No	561(93.2)
Changes in color or texture of the skin or hair loss in the area treated with radiation, n (%)
Yes	299 (49.7)
No	303(50.3)
Development of chronic swelling in the irradiated area, n (%)
Yes	101 (16.8)
No	501 (83.2)
Loss of flexibility in the irradiated area, n (%)
Yes	206 (34.2)
No	396 (65.8)
Arthritis at the site of the radiation therapy, n (%)
Yes	21 (3.5)
No	581 (96.5)
Diagnosed with hypo- or hyperthyroidism (under or over-active thyroid), n (%)
Yes	122(20.3)
No	480 (79.9)
Diagnosed with hypoparathyroidism, n (%)
Yes	13 (2.2)
No	589 (97.8)
Are you concerned about cognitive changes, such as memory loss, difficulty with short-term memory, concentration or learning new skills, n (%)
Yes	151 (25.1)
No	451 (74.9)
Are you experiencing fatigue (overwhelming physical, mental or emotional exhaustion)? n (%)
Yes	216 (35.9)
No	386 (64.1)
Development of thyroid nodule or tumor, n (%)
Yes	21 (2.2)
No	589 (97.8)
Diagnosed with a skin cancer in the irradiated area
Yes	12 (2.0)
No	590 (98.0)
Diagnosed with hypertension (high blood pressure), n (%)
Yes	80 (13.3)
No	522 (86.7)
Diagnosed with high cholesterol levels (hypercholesterolemia), n (%)
Yes	56 (13.3)
No	546 (90.7)
Have developed erectile dysfunction or required medical intervention to achieve an erection
Yes	29 (4.8)
No	573 (95.3)
Experience sexual changes (vaginal dryness, shrinkage, painful intercourse)
Yes	28 (4.7)
No	574 (95.3)

Note: Percentages may not sum to 100.0% because of rounding.