Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects

Figures & data

Table I. Key questions of the semi-structured interview.

Item	Question	Response alternatives
A. Diagnosis	1a. What is the name of your previous malignant disease?	Lymphoma/Uncertain
	1b. In case of knowledge of lymphoma	HL/Non-HL/Uncertain
B. Treatment	Was chemotherapy, radiotherapy or surgery administrated alone or in combination with each other?	Yes/No/Uncertain
	1a. Name of any chemotherapeutic agents
	1b. Do you know of the drugs “adriamycin” or “epiadriamycin”?	Yes/No
	1c. Sites of radiation therapy
C. Late effects	Have you been made aware of that your previous treatment could cause future health problems?	Yes/No
	(Patients were encouraged to provide comments)	Comments
D. Follow-up and information	1. Have you ever attended a clinic for the purpose of late effects follow-up? (After discontinuation of regular follow-up at the responsible pediatric/oncological unit)	Yes/No/Uncertain
	2. Have you seen a doctor for the last two years?	Yes/No
	2a. Do you think that this consultation was related to your previous cancer and treatment?	Yes/No
	3. Have you ever received a written summary of your disease and treatment?	Yes/No

Table II. Demographics of participants.

	HL^a (N(%))	Non-HL^a (N(%))	Total (N(%))
Number of survivors	84 (66%)	44 (34%)	128 (100%)
Male	40 (48%)	29 (66%)	69 (54%)
Female	44 (52%)	15 (35%)	59 (46%)
Age at diagnosis (years)	15 (0–18)^b	12 (2–18)^b	14 (0–18)^b
Age at survey (years)	34 (19–55)^b	30 (21–8)^b	32 (19–55)^b
Observation time (years)^c	21 (7–37)^b	20 (9–36)^b	20 (7–37)^b
Treatment modalities
Chemotherapy alone	16 (19%)	26 (59%)	42 (33%)
Radiotherapy alone	11 (13%)	1 (2%)	12 (9%)
In combination	57 (68%)	17 (39%)	74 (58%)
Education level
≤9 years	6 (7%)	9 (20%)	15 (12%)
10–12 years	34 (40%)	14 (32%)	48 (38%)
>12 years	44 (52%)	20 (45%)	64 (50%)

^aHL, Hodgkin's Lymphoma; Non-HL, Non-Hodgkin's Lymphoma.

^bMedian (range).

^cTime from diagnosis to survey.

Table III. Responses to key questions.

	Correct (N(%))	Incorrect (N(%))	Total (N)
A. Diagnosis
Main diagnosis:
Malignant lymphoma	121 (95%)	7 (5%)	128
Lymphoma types:
HL	71 (87%)	11 (13%)	82
Non-HL	17 (44%)	22 (56%)	39
B. Treatment
All	123 (96%)	5 (4%)	128
Chemotherapy alone	38 (90%)	4 (10%)	42
Radiotherapy alone	11 (92%)	1 (8%)	12
Combination	74 (100%)		74
	Yes	No
C. Late effects	43 (34%)	85 (66%)	128
D. Follow-up and information
Attended a clinic for follow-up	16* (13%)	112 (87%)	128
Consulted doctor last 2 years	123 (96%)	5 (4%)	128
Consultation related to lymphoma	65 (53%)	58 (47%)	128
Have received written summary	15 (12%)	113 (88%)	128

*nine had participated in a previous study including breast cancer screening [13].

seven survivors were still enrolled in pediatric cancer follow-up.

Figure 1. Knowledge about type of chemotherapy used in their treatment among 116 survivors after childhood malignant lymphoma.

Table IV. Factors associated with the awareness of late effects.

		Aware/Total N = 128	Aware (%)	pvalue
Age at diagnosis	≤10 years	13/34	38%	0.43
	11–15 years	17/42	40%
	>15	13/52	25%
Gender	Male	23/69	33%	0.95
	Female	20/59^3	34%
Education^1	≤9 years	3/15^3	20%	0.15
	10–12 years	14/48	29%
	> 12 years	25/64	39%
Diagnosis	Hodgkin	28/84	33%	0.93
	Non-Hodgkin	15/44^3	34%
Treatment period^2	1970–1979	7/30^3	23%	0.009
	1980–1989	11/41	27%
	1990–2000	25/57^3	44%
Treatment	Chemo alone	5/42^3	36%	0.96
	Radiation alone	3/12	25%
	Combination	25/74	34%
Hospitals	NRH	19/70	27%	0.09
	Other hospitals	24/58	41%

¹Education, total number of answers 127; one lacking.

²Chi-square test p < 0.01 comparing the two first periods combined with the third period.

³Categories combined.

Fosså SD, Hess SL, Dahl AA, Hjermstad MJ, Veenstra M. Stability of health-related quality of life in the Norwegian general population and impact of chronic morbidity in individuals with and without a cancer diagnosis. Acta Oncol 2007;46:452–61.

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