Adolescent and young adult (AYA) lymphoma survivors report lower health-related quality of life compared to a normative population: results from the PROFILES registry

Figures & data

Table 1. Sociodemographic and clinical characteristics of AYA lymphoma patients compared to normative population.

	AYA cancer patients N = 198 N (%)	Normative population N = 380 N (%)	p-Value
Sex (male)	112 (57%)	204 (54%)	0.47
Age at time diagnosis – M (SD)	30.4 (6.4)	NA
Age at time diagnosis		NA
18–25 years	55 (28%)
26–39 years	143 (72%)
Age at time survey^a – M (SD)	34.7 (7.4)	35.2 (8.0)	0.50
Age at time survey^a			0.20
18–29 years	45 (23)	83 (22)
30–35 years	59 (30)	85 (22)
36–40 years	45 (23)	104 (27)
≥41 years	49 (25)	108 (28)
Years since diagnosis – M (SD)	4.2 (2.7)	NA
Years since diagnosis		NA
<2 years	54 (27%)
2–5 years	69 (35%)
>5 years	75 (38%)
Tumor type		NA
Hodgkin lymphoma	89 (45%)
Non-Hodgkin lymphoma	109 (55%)
Stageb		NA
I	43 (22%)
II	84 (42%)
III	31 (16%)
IV	34 (17%)
Unknown	6 (3%)
Primary treatment		NA
Wait and see	15 (8%)
Chemotherapy alone	85 (43%)
Radiotherapy alone	9 (4%)
Stem cell transplantation	1 (1%)
Radiotherapy and chemotherapy	82 (41%)
Other therapies	5 (3%)
Missing	1 (1%)
Number of comorbid conditions^d – M (SD)	1.3 (3.0)	0.6 (1.3)	<0.01
Number of comorbid conditions			0.01
None	122 (62%)	246 (65%)
One	36 (18%)	90 (24%)
Two or more	40 (20%)	44 (12%)
Partner (yes)	137 (69%)	312 (82%)	<0.01
Job (yes)	132 (75%)	301 (79%)	0.22
Educational level			<0.01
Low	53 (27%)	10 (3%)
Middle	112 (58%)	219 (58%)
High	29 (15%)	149 (39%)

^a Matching was based on age at questionnaire completion and sex; ^bDisease stage was not available for some indolent non-Hodgkin lymphoma patients; ∼22 patients had indolent non-Hodgkin lymphoma and 87 had aggressive non-Hodgkin lymphoma; ^dComorbid conditions that were assessed included heart disease, stroke, high blood pressure, lung disease (e.g., COPD, asthma), diabetes, ulcer, kidney disease, liver disease, anemia, thyroid disease, depression, rheumatism, back pain, osteoarthritis.

M: mean; NA: not applicable; SD: standard deviation.

Figure 1. Comparison of HRQoL (a), long-term symptoms (b) and psychological distress scores (c) between patients and normative population. Note: *p < 0.05 and trivially clinically important difference; **p < 0.05 and small clinically important difference; ***p < 0.05 and medium clinically important difference. (a) Scores can range from 0 to 100 with higher scores implying a better HRQoL. (b) Scores can range from 0 to 100 with higher scores implying more symptoms. (c) Scores can range from 0 to 21 with higher scores implying more psychological distress.

Table 2. Standardized betas of hierarchical multiple linear regression analyses evaluating the association of demographic and clinical characteristics, symptoms and psychological distress with HRQoL among AYA lymphoma patients.

	Global quality of life Beta	Physical functioning Beta	Role functioning Beta	Emotional functioning Beta	Cognitive functioning Beta	Social functioning Beta
Model 1: Demographics and clinical variables
Age time diagnosis ≥26 years (ref 18–25 years)	−0.09	−0.12	−0.06	−0.10	−0.21**	−0.16*
Sex
Females (ref males)	−0.04	−0.24**	−0.16*	−0.04	−0.21**	−0.22**
Education
High vs. medium	−0.06	−0.01	−0.12	0.09	−0.06	−0.08
High vs. Low	−0.05	−0.03	−0.05	0.05	−0.02	−0.03
Partner
Partner (ref no partner)	−0.04	−0.01	0.04	0.13	0.03	0.11
Job
No (ref yes)	−0.34**	−0.35**	−0.25**	−0.21**	−0.23**	−0.16*
Time since diagnosis	−0.06	0.03	0.12	0.02	0.12	0.05
Tumor type
HL (ref NHL)	0.01	−0.05	0.07	0.07	−0.02	0.07
Stage
1 vs. 2	−0.15	0.08	−0.05	−0.16	−0.08	−0.15
1 vs. 3	−0.13	−0.08	0.01	−0.10	−0.04	−0.09
1 vs. 4	−0.14	−0.03	−0.03	−0.04	−0.11	−0.14
1 vs. missing	−0.04	−0.03	−0.09	−0.06	−0.04	0.02
Comorbid conditions
0 vs. 1	−0.10	−0.17*	−0.12	−0.14	−0.18*	−0.14
1 vs. 2 or more	−0.19*	−0.20**	−0.21**	−0.34**	−0.17*	−0.12
R^2	0.23	0.33	0.24	0.26	0.25	0.19
Model 2: Model 1 + long-term symptoms
Fatigue	−0.40**	−0.41**	−0.66**	−0.41**	−0.50**	−0.43
Pain	−0.25**	−0.25**	−0.13	−0.05	−0.01	0.01
Insomnia	−0.07	0.05	0.01	−0.28**	−0.08	0.17*
Financial problems	−0.15	−0.17*	−0.06	−0.08	−0.05	−0.47**
R^2	0.56	0.63	0.63	0.55	0.48	0.55
Model 3: Model 1 + psychological distress
Anxiety	−0.15	−0.23**	−0.15	−0.51**	−0.31**	−0.12
Depression	−0.52**	−0.18*	−0.30**	−0.27**	−0.29**	−0.40**
R^2	0.50	0.45	0.36	0.64	0.47	0.34

* p < 0.05; **p < 0.01.