Patient demographic and clinical characteristics
Forty-one children of 172 receiving therapy over the period described were recruited; parents of all children and 25 children completed surveys (12 children aged 5 to 9 years, and 13 children aged 10 to 18 years). One child aged 5 years, and one child aged 6 years completed the MSAS 7 -12, with the remainder aged between 7 and 9 years. Most children and parents completed the survey just once, but eight parents completed it between two and four times, and four children completed it between two and three times. In total, 54 parent surveys, 14 MSAS 7 – 12 surveys and 15 MSAS 10 – 18 surveys were completed.
Most children had a malignant condition, while three were undergoing bone marrow transplant for an immunological condition. Most surveys were completed in the inpatient setting in the context of receiving disease-targeted and/or supportive treatments. More than half the surveys were completed within 10 days of chemotherapy administration. Haematological malignancies (leukemia or lymphoma) were represented more frequently than solid organ and brain tumours. The duration from diagnosis to recruitment ranged from several days to 6.5 years, with a median of 4.8 months. Eleven (27%) children died between 4 months and 3.3 years of being recruited to the study. No child died during the study period. Table 1 summarises the demographic, clinical and treatment details for patients.
|
Number (%)
|
Age
|
|
Range
< 7 years
7 – 9 years
10 years and above
Median
|
8 months – 18 years
19 (46%)
8 (20%)
14 (34%)
7.5 years
|
Gender
|
|
Female
|
22 (54%)
|
Male
|
19 (46%)
|
Relationship of carer
Mother
Father
|
35 (85%)
6 (15%)
|
Condition
|
|
Haematological malignancy
|
22 (54%)
|
Solid malignancy
|
11 (27%)
|
Brain malignancy
Non-malignant condition
|
5 (12%)
3 (7%)
|
Chemotherapy in last 10 days
(oral or intravenous)
|
33 (61%)
|
Radiotherapy in last 10 days
|
2 (4%)
|
Location of episode of care
Inpatient
Outpatient
|
44 (81%)
10 (19%)
|
Admission reason if inpatient
(n=44, more than one option possible)
|
|
Diagnostic workup
|
5 (11%)
|
Planned disease directed therapy
Chemotherapy
Radiotherapy
Bone marrow transplant
|
26 (59%)
18 (69%)
1 (4%)
11 (42%)
|
Supportive care
Febrile neutropenia
Infection
Nutritional support
Mucositis
Pain
|
34 (77%)
19 (56%)
9 (26%)
9 (26%)
6 (18%)
7 (21%)
|
End of life care
|
0 (0%)
|
Teams involved during episode of care (n=54)
|
|
Pain team
|
7 (13%)
|
Palliative care team
|
9 (17%)
|
Psycho-oncology team
|
6 (11%)
|
Status at time of write up
Alive
Deceased
Time between enrolment and death
|
30 (73%)
11 (27%)
4 months – 3.3 years
|
Average time between enrolment and death
|
18 months
|
|
|
|
Table 1. Demographic, clinical and treatment contexts
Symptom prevalence and burden
On the 8-item MSAS 7 – 12 form, children reported a mean of 5 symptoms (standard deviation (SD) = 2.0). On the 31-item MSAS 10 – 18 form, children reported a mean of 18 (SD = 3.7) symptoms. On the proxy MSAS 10 – 18 form, parents reported a mean of 15 (SD = 5.4) symptoms experienced by their child.
Tables 2 and 3 summarise child self-reports and parent proxy-reports of symptom prevalence, frequency, severity and distress. Figure 1 illustrates the degree of distress from each symptom, with responses of ‘quite a bit’ or ‘very much’ to the question ‘How much did it bother or distress them/you?’ considered high distress.
Change in appetite (n=25, 86%), nausea (n=23, 79%) and pain (n=23, 79%) were the most prevalent symptoms reported by children. Lack of energy (n=15, 100%), hair loss (n=12, 80%) and change in self-image (n=11, 73%) were the most prevalent among children aged 10 – 18 years (noting that these symptoms are not included on the MSAS 7 – 12 form). Psychological symptoms were reported in more than half of the child completed surveys, including worrying (n=19, 66%) and sadness (n=15, 52%). Most prevalent symptoms reported by parents included lack of energy (n=49, 91%), pain (n=48, 89%), nausea (n=44, 81%) and lack of appetite (n=43, 80%).
Prevalence did not always correlate with symptom frequency, severity or distress. For example, all children aged 10 – 18 years experienced lack of energy, while only 4 (27%) found it distressing. In addition, while only 14 (26%) children whose parents reported difficulty swallowing, if present this caused them high distress (n=8, 57%). Younger children were less likely to report distress from symptoms compared with older children and parents.
Symptom
|
Prevalence
n (%)
|
High frequency*
(if present)
n (%)
|
High severity**
(if present)
n (%)
|
High distress***
(if present)
n (%)
|
Symptoms included on both MSAS 7 – 12 and MSAS 10 – 18 (n = 29)
|
Change/lack of appetite
|
25 (86%)
|
19 (76%)
|
-
|
4 (16%)
|
Nausea
|
23 (79%)
|
5 (22%)
|
-
|
3 (13%)
|
Pain
|
23 (79%)
|
11 (48%)
|
13 (57%)
|
10 (43%)
|
Tired/drowsy
|
20 (69%)
|
10 (50%)
|
7 (35%)
|
2 (10%)
|
Worrying
|
19 (66%)
|
5 (26%)
|
5 (26%)
|
4 (21%)
|
Difficulty sleeping
|
16 (55%)
|
-
|
-
|
2 (13%)
|
Sadness
|
15 (52%)
|
5 (33%)
|
5 (33%)
|
5 (33%)
|
Itch
|
9 (31%)
|
2 (22%)
|
1 (11%)
|
2 (22%)
|
Symptoms included only on the MSAS 10 – 18 (n = 15)
|
Lack of energy
|
15 (100%)
|
10 (67%)
|
6 (40%)
|
4 (27%)
|
Hair loss
|
12 (80%)
|
-
|
7 (58%)
|
2 (17%)
|
“I don’t look like myself”
|
11 (73%)
|
-
|
6 (55%)
|
6 (55%)
|
Feeling irritable
|
10 (67%)
|
5 (50%)
|
3 (30%)
|
2 (20%)
|
Headache
|
10 (67%)
|
2 (20%)
|
4 (40%)
|
2 (20%)
|
Altered taste
|
10 (67%)
|
|
4 (40%)
|
3 (30%)
|
Difficulty concentrating
|
9 (60%)
|
3 (33%)
|
2 (22%)
|
1 (11%)
|
Dry mouth
|
9 (60%)
|
4 (44%)
|
4 (44%)
|
3 (33%)
|
Difficulty swallowing
|
9 (60%)
|
6 (67%)
|
4 (44%)
|
5 (56%)
|
Mouth sores
|
8 (53%)
|
-
|
5 (63%)
|
4 (50%)
|
Weight loss
|
8 (53%)
|
-
|
3 (38%)
|
1 (13%)
|
Constipation
|
8 (53%)
|
-
|
2 (25%)
|
2 (25%)
|
Changes in skin
|
8 (53%)
|
-
|
2 (25%)
|
1 (13%)
|
Feeling nervous
|
7 (47%)
|
2 (29%)
|
1 (14%)
|
2 (29%)
|
Diarrhoea
|
7 (47%)
|
2 (29%)
|
4 (57%)
|
3 (43%)
|
Vomiting
|
6 (40%)
|
2 (33%)
|
2 (33%)
|
3 (50%)
|
Shortness of breath
|
6 (40%)
|
0 (0%)
|
1 (17%)
|
2 (33%)
|
Sweats
|
6 (40%)
|
3 (50%)
|
1 (17%)
|
1 (17%)
|
Swelling of arms/legs
|
6 (40%)
|
-
|
3 (50%)
|
2 (33%)
|
Dizziness
|
6 (40%)
|
1 (17%)
|
2 (33%)
|
2 (33%)
|
Numbness/tingling in hands/feet
|
4 (27%)
|
2 (50%)
|
1 (25%)
|
0 (0%)
|
Problems with urination/peeing
|
3 (20%)
|
1 (33%)
|
0 (0%)
|
0 (0%)
|
Cough
|
2 (13%)
|
0 (0%)
|
0 (0%)
|
0 (0%)
|
Table 2. Child self-reports of symptom prevalence and associated severity, frequency, and distress if present
(*‘a lot/ almost always’ **‘severe/ very severe’ ***‘quite a bit/very much’)
Symptom
|
Prevalence
n (%)
|
High frequency*
(if present)
n (%)
|
High severity**
(if present)
n (%)
|
High distress***
(if present)
n (%)
|
Lack of energy
|
49 (91%)
|
33 (67%)
|
16 (33%)
|
11 (22%)
|
Pain
|
48 (89%)
|
20 (42%)
|
12 (25%)
|
23 (48%)
|
Nausea
|
44 (81%)
|
17 (39%)
|
8 (18%)
|
13 (30%)
|
Lack of appetite
|
43 (80%)
|
35 (81%)
|
17 (40%)
|
5 (12%)
|
Feeling irritable
|
42 (78%)
|
16 (38%)
|
6 (14%)
|
7 (17%)
|
Feeling drowsy
|
37 (69%)
|
17 (46%)
|
10 (27%)
|
3 (8%)
|
Altered taste
|
32 (59%)
|
-
|
14 (44%)
|
11 (34%)
|
Difficulty concentrating
|
32 (59%)
|
15 (47%)
|
6 (19%)
|
2 (6%)
|
Sadness
|
32 (59%)
|
8 (25%)
|
6 (19%)
|
9 (28%)
|
Feeling nervous
|
30 (56%)
|
6 (20%)
|
6 (20%)
|
6 (20%)
|
Diarrhoea
|
29 (54%)
|
12 (41%)
|
8 (28%)
|
5 (17%)
|
Difficulty sleeping
|
29 (54%)
|
9 (31%)
|
5 (17%)
|
5 (17%)
|
Vomiting
|
29 (54%)
|
10 (34%)
|
3 (10%)
|
7 (24%)
|
Weight loss
|
28 (52%)
|
-
|
5 (18%)
|
1 (4%)
|
Hair loss
|
27 (50%)
|
-
|
12 (44%)
|
6 (22%)
|
Cough
|
27 (50%)
|
6 (22%)
|
4 (15%)
|
3 (11%)
|
Dry mouth
|
26 (48%)
|
13 (50%)
|
5 (19%)
|
6 (23%)
|
Changes in skin
|
25 (46%)
|
-
|
7 (28%)
|
4 (16%)
|
Worrying
|
25 (46%)
|
4 (16%)
|
2 (8%)
|
4 (16%)
|
Shortness of breath
|
22 (41%)
|
5 (23%)
|
4 (18%)
|
5 (23%)
|
Sweats
|
22 (41%)
|
8 (36%)
|
3 (14%)
|
1 (5%)
|
Mouth sores
|
19 (35%)
|
-
|
8 (42%)
|
11 (58%)
|
Headache
|
18 (33%)
|
8 (44%)
|
7 (39%)
|
8 (44%)
|
Itch
|
18 (33%)
|
3 (17%)
|
5 (28%)
|
6 (33%)
|
Constipation
|
15 (28%)
|
-
|
6 (40%)
|
6 (40%)
|
Numbness/tingling in hands/feet
|
15 (28%)
|
4 (27%)
|
4 (27%)
|
4 (27%)
|
Difficulty swallowing
|
14 (26%)
|
8 (57%)
|
7 (50%)
|
8 (57%)
|
Swelling of arms/legs
|
12 (22%)
|
-
|
3 (25%)
|
2 (17%)
|
“I don’t look like myself”
|
11 (20%)
|
-
|
4 (36%)
|
4 (36%)
|
Dizziness
|
10 (19%)
|
1 (10%)
|
2 (20%)
|
1 (10%)
|
Problems with urination/peeing
|
6 (11%)
|
1 (17%)
|
2 (33%)
|
2 (33%)
|
Table 3. Parent proxy-reports of symptom prevalence and associated severity, frequency, and distress if present (n=54)
(*‘a lot/ almost always’ **‘severe/ very severe’ ***‘quite a bit/very much’)