Identifying pain-related concerns in routine follow-up clinics following oral and oropharyngeal cancer

Table 1 Touch-screen responses from 177 patients to questions about pain on the University of Washington Quality of Life questionnaire and on the Liverpool Patients Concerns Inventory before first study attendance at clinic from October 2008 to January 2011

UW-QOL Pain	Stated on PCI that patient wished to discuss the issue of “Pain in head and neck”
	No (Stated on PCI that patient wished to discuss the issue of “Pain elsewhere”)		Yes (Stated on PCI that patient wished to discuss the issue of “Pain elsewhere”)
	No	Yes	No	Yes
(0) I have severe pain, not controlled by medication	32	-2	-2	22
(25) I have severe pain controlled only by prescription medicine (e.g., morphine)	112	32	22	12
(50) I have moderate pain - requires medication (e.g., paracetamol)/and pain IMPORTANT1	102	32	62	32
(50) I have moderate pain - requires medication (e.g., paracetamol)/and pain NOT IMPORTANT1	13	22	32	-2
(75) There is mild pain not needing medication	22	32	82	-2
(100) I have no pain	75	-2	72	-2

¹Pain was one of three issues most important to patient within the past week;

²Represents those who had reported “significant problems” on the University of Washington Quality of Life questionnaire, version 4 (UW-QOL) or those who had raised pain concerns on the Patients Concerns Inventory (PCI).

Table 2 Patient factors, by whether there was any evidence of significant pain from the University of Washington Quality of Life questionnaire and by whether pain issues were raised for discussion on the Patients Concerns Inventory at the first study clinic n (%)

	Patients	No significant pain and no wish to discuss pain (n = 110)	Significant pain (n = 44)	No significant pain but wish to discuss pain (n = 23)	P value1
Male	112	71 (63)	29 (26)	12 (11)	0.49
Female	65	39 (60)	15 (23)	11 (17)
Age (< 55 yr)	45	23 (51)	15 (33)	7 (16)	0.03
Age (55-64 yr)	64	35 (55)	19 (30)	10 (16)
Age (65+ yr)	68	52 (76)	10 (15)	6 (9)
Squamous cell carcinoma	158	101 (64)	39 (25)	18 (11)	0.16
Other diagnosis	19	9 (47)	5 (25)	5 (26)
Oral cavity tumor	126	83 (66)	28 (22)	15 (12)	0.71 (oral vs pharyngeal)
Pharygeal	41	20 (49)	15 (37)	6 (15)
Other site	10	7 (70)	1 (10)	2 (20)
Clinical T1/T2	140	93 (66)	31 (22)	16 (11)	0.11
Clinical T3/T4	34	16 (47)	12 (35)	6 (12)
Clinical N0	139	89 (64)	34 (24)	16 (12)	0.43
Clinical N+	36	20 (56)	9 (25)	7 (19)
Primary surgery only	103	68 (66)	26 (25)	9 (9)	0.006
Primary surgery and RT	56	32 (57)	10 (18)	14 (25)
No surgery, primary RT	18	10 (56)	8 (44)	- (-)
Within 12 months of diagnosis	73	45 (62)	20 (27)	8 (11)	0.18
Within 12-23 mo of diagnosis	23	15 (65)	6 (26)	2 (9)
Within 24-47 mo since diagnosis	37	23 (62)	10 (27)	4 (11)
48 or more months from diagnosis	44	27 (61)	8 (18)	9 (20)

¹χ² test, apart from Kruskal-Wallis test for age and time from diagnosis and using the numerical values.

Table 3 Quality of life as measured by the University of Washington Quality of Life questionnaire, by whether there was any evidence of significant pain from the University of Washington Quality of Life questionnaire and by whether pain issues were raised for discussion on the Patients Concerns Inventory at the first study clinic n (%)

	No significant pain and no wish to discuss pain (n = 110)	Significant pain(n = 44)	No significant pain but wish to discuss pain (n = 23)	P value2
Significant problems3
Appearance	5 (5)	14 (32)	2 (9)	< 0.001
Swallowing	17 (15)	14 (32)	3 (13)	0.05
Chewing	15 (14)	9 (20)	1 (4)	0.19
Speech	5 (5)	7 (16)	- (-)	0.02
Taste	15 (14)	7 (16)	- (-)	0.14
Saliva	17 (15)	12 (27)	7 (30)	0.04
Physical function subscale, median (IQR)	80 (62-95)	58 (45-72)	68 (54-72)	< 0.001
Significant problems3
Activity	7 (6)	8 (18)	4 (17)	0.06
Recreation	7 (6)	4 (9)	3 (13)	0.53
Shoulder	6 (5)	7 (16)	7 (30)	0.001
Mood	10 (9)	21 (48)	6 (26)	< 0.001
Anxiety	11 (10)	18 (41)	7 (30)	< 0.001
Mood and/or anxiety	15 (14)	23 (52)	11 (48)	< 0.001
Social-emotional subscale1, median (IQR)	85 (73-94)	60 (45-73)	63 (54-79)	< 0.001
Overall QOL
Very poor	- (-)	- (-)	- (-)	< 0.001
Poor	4 (4)	6 (14)	2 (9)
Fair	16 (15)	17 (40)	9 (41)
Good	32 (29)	13 (30)	6 (27)
Very good	44 (40)	6 (14)	5 (23)
Outstanding	14 (13)	1 (2)	- (-)
% less than good	20 (18)	23 (53)	11 (50)	< 0.001

¹The social-emotional subscale score was computed using five domains only, i.e., after excluding pain;

²χ² test, apart from using the Kruskal-Wallis test with actual subscale scores and with the ordinal scale for overall Quality of Life (QOL);

³The criteria used for determining if there was a significant problem can be found in previous work[21]. IQR: Interquartile range.

Table 4 The most common concerns raised by patients on the Patients Concerns Inventory for each clinical group

No significant pain and no wish to discuss pain (n = 110)		Significant pain (n = 44)		No significant pain but wish to discuss pain (n = 23)
Issue	%	Issue	%	Issue	%
Fear of the cancer coming back	26	Fear of the cancer coming back	57	Pain in head and neck	78
Dental health/teeth	21	Dental health / teeth	46	Fear of the cancer coming back	61
Chewing /Eating	21	Chewing / Eating	39	Shoulder	44
Salivation	16	Fatigue / tiredness	39	Fatigue / tiredness	39
Swallowing	15	Swallowing	39	Dental health / teeth	35
Mucous production	13	Pain in head and neck	32	Swallowing	35
Fatigue/tiredness	13	Mood	30	Chewing / Eating	30
Mouth opening	12	Energy levels	30	Mood	30
Breathing	11	Pain elsewhere	27	Mucous production	26
Sleeping	11	Appearance	27	Sleeping	26
Weight	11	Depression	25	Salivation	26
Taste	11	Sleeping	25	Energy levels	26
		Anxiety	25

Table 5 Longitudinal perspective

	First study clinic
	No significant pain and no wish to discuss pain	Significant pain	No significant pain but wish to discuss pain
Second study clinic (112 patients)
No significant pain and no wish to discuss pain	55	5	9
Significant pain	8	16	4
No significant pain but wish to discuss pain	7	-	8
Third study clinic (59 patients)
No significant pain and no wish to discuss pain	31	5	3
Significant pain	3	9	-
No significant pain but wish to discuss pain	5	-	3
Fourth study clinic (30 patients)
No significant pain and no wish to discuss pain	20	2	-
Significant pain	3	2	1
No significant pain but wish to discuss pain	1	-	1

Table 6 Mention of pain in clinic letters and onward referral

	No significant pain and no wish to discuss pain	Significant pain	No significant pain but wish to discuss pain
Number of clinics (number of patients)	256 (110)	85 (44)	55 (23)
Number of clinics with clinic letters found	240	79	51
Pain mentioned in clinic letter	12% (29/240) from 27 patients (26 patients once, 1 patient 3 times)	56% (44/79) from 29 patients (19 patients once, 7 patients twice, 1 patient three times, 2 patients four times)	47% (24/51) from 19 patients (14 patients once, 5 patients twice)
Onward referral for pain	0.8% (2/240)	11% (9/79) (1 patient once, 2 patients twice, 1 patient 4 times)	8% (4/51)
Who was patient referred to	Consultant gastroenterologist (1)	Patient 1: first to consultant orthopaedic surgeon then three times to chronic pain team	Senior physiotherapist (2)
	Consultant restorative dentist (1)	Patient 2: first to senior physiotherapist then to chronic pain management programme	Consultant in oral medicine (1)
		Patient 3: first to consultant orthopaedic surgeon then to palliative care	Consultant in pain relief (1)
		Patient 4: to consultant in oral medicine
Pain medications mentioned in letter (often in combination)	Gabapentin (1), Oromorph (1), MST (1)	Aciclovir (1), Aspirin (1), Brufen (2), Codeine phosphate (1), Dicofenac (1), Fentanyl patch 25 (1), Gabapentin (7), Morphine patches (2), MST (1), Oromorph (6), Oxynorm (3), Oxycontin (2), Paracetamol (4),Solpadeine (1), Solpadol (1)	None mentioned
Pain as mentioned in letter (number of occasion)	Oral and teeth pain (7)	Single site: Jaw (7); Neck (5); Teeth (1); Face (2); Oral/throat (5); Chest (1); Shoulder (2); Hip (1)	Oral/throat pain (4)
	Jaw pain (4)	Multiple sites: 10	Generalised pain in treated area (2)
	Facial pain (3)	Related to function: 1	Back pain (2)
	Shoulder pain (4)	Related to fear of cancer recurrence: 3	Shoulder pain (2)
	Neck pain (2)	Related to fear of addition to analgesia: 1	Neck (4)
	Ear pain (2)		Shoulder and neck pain (2)
	Stomach pain (2)		Shoulder pain
	Back pain (1)		Jaw pain (1)
	Chest wall pain (1)