Quality of life in children and adolescents with blood coagulation disorders and hemoglobinopathies

SILVA, Leandro Tavares da; FRUSCA-DO-MONTE, Carolina Mendes; ALMEIDA, Gabriela Silva; SILVA, Victor Cordeiro da; LORENZATO, Claudia Santos; BENDO, Cristiane Baccin; MENEZES, José Vítor Nogara Borges; TORRES-PEREIRA, Cassius Carvalho; FRAIZ, Fabian Calixto

doi:10.1590/1807-3107bor-2024.vol38.0052

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Original Research/Pediatric Dentistry • Braz. oral. res. 38 • 2024 • https://doi.org/10.1590/1807-3107bor-2024.vol38.0052 linkcopy

Quality of life in children and adolescents with blood coagulation disorders and hemoglobinopathies

Authorship SCIMAGO INSTITUTIONS RANKINGS

The aim of this study was to evaluate the impact of oral conditions and health-related quality of life (HRQoL) on oral health-related quality of life (OHRQoL) in children and adolescents with blood coagulation disorders and hemoglobinopathies (BCDH). The study was cross-sectional and included 61 individuals aged 2 to 18 years with BCDH. Exams for dental caries (dmft/DMFT index), oral hygiene (simplified oral hygiene index – OHI-S), and gingival health (modified gingival index – MGI) were performed. The pediatric quality of life inventory™ (PedsQL™) generic core scale and oral health scale were used to measure HRQoL and OHRQoL. Spearman’s correlation coefficient (ρ) and the Mann-Whitney test (α = 0.05) were conducted to assess the relationship between covariates and the PedsQL™ oral health scale. The mean PedsQL™ oral health scale score was 76.66 (SD = 21.36). Worse OHRQoL was correlated with poor oral hygiene (ρ = -0.383; p: 0.004), poor gingival health (ρ = -0.327; p = 0.014), and better HRQoL (ρ = 0.488; p < 0.001). Greater untreated dental caries experience was associated with worse OHRQoL (p = 0.009). Worse oral health status in children and adolescents with BCDH negatively impacts OHRQoL, and OHRQoL and quality of life analyzed from a generic perspective are positively correlated constructs in this population.

Blood Coagulation Disorders; Hemoglobinopathies; Quality of Life; Child; Adolescent; Oral Health

Variables	n (%)
Sex of the children and adolescents
Male	42 (68.9)
Female	19 (31.1)
Race/ethnicity of the children and adolescents
White	36 (59.0)
Brown	9 (14.8)
Black	7 (11.5)
Other	2 (1.8)
Undeclared	7 (11.5)
Race/ethnicity of the guardians
White	24 (39.3)
Brown	8 (13.1)
Black	7 (11.5)
Other	0 (0.0)
Undeclared	22 (36.1)
Years of education of the guardian*
≤ 8 years	22 (37.3)
> 8 years	37 (62.7)

Variables	n (%)
Presence of UDC (dmft/DMFT)
No	28 (45.9)
Yes	33 (54.1)
Gingival health (MGI)
Absence of inflammation	12 (21.4)
Mild inflammation	38 (67.8)
Moderate inflammation	5 (9.0)
Severe inflammation	1 (1.8)
Oral hygiene (OHI-S)
Good	7 (12.7)
Regular	42 (77.6)
Poor	6 (10.9)

Variables	n (%)
Blood coagulation disorders	30 (49.1)
Hemophilia A	21 (34.4)
Hemophilia B	3 (4.9)
Von Willebrand disease	4 (6.5)
Other blood coagulation disorders	2 (3.3)
Inherited hemoglobinopathies	29 (47.9)
Sickle cell disease	22 (36.1)
Thalassemia	4 (6.6)
Other inherited hemoglobinopathies	3 (4.9)
Other unspecified diseases	2 (3.3)
Guardian’s perception of the oral health of the children and adolescents
Positive	36 (59.0)
Negative	25 (41.0)
Report of refusal of dental care*
No	49 (84.4)
Yes	9 (15.6)
Increased risk of gingival bleeding due to underlying disease
No	36 (59.0)
Yes	25 (41.0)
Guardians’ perception of gingival bleeding in the children and adolescents*
No	42 (70.0)
Yes	18 (30.0)

Scale	Mean (SD)	Min-Max
Physical functioning	75.61 (21.78)	12.50–100
Emotional functioning	68.54 (22.71)	0–100
Social functioning	78.68 (22.30)	0–100
School functioning	64.46 (23.30)	0–100
Total score: generic core scale	72.64 (19.41)	8.70–100
Total score: oral health scale	76.66 (21.36)	0-100

Variables	PedsQL™ oral health scale	p-value	Magnitude of the correlation

	Correlation coefficient*
Age (n = 60)	-0.491	< 0.001	moderate
Income per capita (n = 54)	0.111	0.424	-
Oral hygiene - OHI-S (n= 55)	-0.383	0.004	weak
Gingival health - MGI (n = 56)	-0.327	0.014	weak
PEDSQL™ generic core scale 4.0 (n = 60)	0.488	< 0.001	moderate

Variables (n)	Mean (SD)	Median	Min-Max	p-value*
Sex of the children and adolescents
Female (19)	76.05 (20.31)	80.00	30.00–100	0.791
Male (41)	76.95 (22.07)	80.00	0–100	0.791
Guardian’s marital status
Married/in a common law marriage (45)	78.44 (21.18)	80.00	0–100	0.572
Other (13)	74.61 (21.55)	80.00	35.00–100	0.572
Guardian’s years of education
≤ 8 years (21)	78.33 (19.12)	80.00	35.00–100	0.948
> 8 years (37)	77.16 (22.43)	80.00	0–100	0.948
Presence of untreated dental caries
Yes (35)	70.28 (22.58)	80.00	0–100	0.005
No (24)	85.00 (16.08)	92.50	50.00–100	0.005
Increased risk of bleeding due to underlying disease
Yes (23)	75.21 (23.76)	80.00	0–100	0.614
No (33)	79.09 (20.01)	80.00	0–100	0.614
Guardian’s perception of the children’s and adolescents’ oral health
Positive (36)	83.33 (16.34)	87.50	50.00–100	0.006
Negative (24)	66.66 (24.30)	72.50	0–100	0.006
Guardian’s perception of children’s and adolescents’ gingival bleeding
Yes (18)	62.50 (15.45)	60.00	35.00–100	< 0.001
No (41)	82.68 (21.03)	85.00	0–100	< 0.001

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[TFN1] *n values lower than 61 represent unfilled items.