Risk factors for hospitalizations and readmissions among individuals with sickle cell disease: results of a U.S. survey study

Figures & data

Table 1. Socio-demographics for adult participants with sickle cell disease.

Variable		Adults (N = 201)	Children^a (N = 330)	Combined (N = 531)
Age	Years (SD, Range)	26.0 (22.0–35.0)	10.0 (6.0–14.0)	14.0 (8.0–24.0)
Sex	Male	85 (40.3%)	160 (48.3%)	245 (45.2%)
	Female	116 (55.0%)	170 (51.4%)	286 (52.8%)
Race/Ethnicity	Black, African American, African, or Afro-Caribbean	193 (91.5%)	323 (97.6%)	516 (95.2%)
	Hispanic, Latino, or Spanish origin	5 (2.4%)	5 (1.5%)	10 (1.8%)
	Some other race or origin	10 (4.7%)	9 (2.7%)	19 (3.5%)
Highest degree or level of school completed	High school graduate or less	85 (40.3%)	133 (40.2%)	218 (40.2%)
	Some college or beyond	112 (53.1%)	126 (38.1%)	238 (43.9%)
Household size	Median (Range)	4 (1–14)	3 (1–8)	4 (1–14)
Marital status	Married/Living together	50 (23.7%)	110 (33.2%)	160 (29.5%)
	Unmarried	151 (71.6%)	220 (66.5%)	371 (68.5%)
Spirituality/Religiosity	Very	75 (35.5%)	151 (45.6%)	226 (41.7%)
	Fairly	87 (41.2%)	102 (30.8%)	189 (34.9%)
	Slightly/Not at All	39 (18.5%)	60 (18.1%)	99 (18.3%)
Difficulty paying monthly bills	Not very/Not at all	114 (54.0%)	176 (53.2%)	290 (53.5%)
	Somewhat/Very	87 (41.2%)	154 (46.5%)	241 (44.5%)
Site	Midwest region:
	Cincinnati	11 (5.2%)	40 (12.1%)	51 (9.4%)
	Chicago	17 (8.1%)	84 (25.4%)	101 (18.6%)
	Western region:
	Oakland	44 (20.9%)	0 (0.0%)	44 (8.1%)
	Mid-South region:
	St. Jude	6 (2.8%)	155 (46.8%)	161 (29.7%)
	UTHSC^c	40 (19.0%)	0 (0.0%)	40 (7.4%)
	Vanderbilt	83 (39.3%)	51 (15.4%)	134 (24.7%)

^aCaregivers were asked to report for their children under 18 years.

^bPercentages may not add up to 100% because of missing data.

^cUTHSC = University of Tennessee Health Science Center.

Table 2. Questions about admissions, readmissions, and appointment keeping (n = 531).

Question	Response	Adults (N = 201)	Children^a (N = 330)	Combined (N = 531)
Admissions
Have you (or your child) been admitted to the hospital within the last year?	No	66 (31.3%)	189 (57.1%)	255 (47.0%)
	Yes	135 (64.0%)	141 (42.6%)	276 (50.9%)
I was unable to get the medication(s) I (or my child) needed.	No	91 (67.4%)	134 (95%)	225 (81.5%)
	Yes	39 (28.9%)	7 (5%)	46 (16.7%)
I did not feel that my (or my childs) medication was working.	No	71 (52.6%)	101 (71.6%)	172 (62.3%)
	Yes	59 (43.7%)	40 (28.4%)	99 (35.9%)
I did not have a good understanding of how often and how much of each medication I (or my child) needed.	No	117 (86.7%)	135 (95.7%)	252 (91.3%)
	Yes	12 (8.9%)	6 (4.3%)	18 (6.5%)
I did not have a good understanding of the major side effects of my (or my childs) medications.	No	120 (88.9%)	132 (93.6%)	252 (91.3%)
	Yes	11 (8.1%)	9 (6.4%)	20 (7.2%)
My (or my childs) pain was not able to be controlled at home.	No	21 (15.6%)	44 (31.2%)	65 (23.6%)
	Yes	113 (83.7%)	97 (68.8%)	210 (76.1%)
I did not have all the information I needed to take care of my (or my childs) illness at home.	No	113 (83.7%)	130 (92.2%)	243 (88%)
	Yes	17 (12.6%)	11 (7.8%)	28 (10.1%)
I did not understand which warning signs and symptoms meant I should call my (or my childs) healthcare provider.	No	114 (84.4%)	131 (92.9%)	245 (88.8%)
	Yes	16 (11.9%)	10 (7.1%)	26 (9.4%)
I (or my child) had an illness unrelated to their sickle cell disease (e.g. asthma).	No	79 (58.5%)	102 (72.3%)	181 (65.6%)
	Yes	50 (37%)	39 (27.7%)	89 (32.2%)
I (or my child) needed to get fluids or blood transfusion	No	40 (29.6%)	60 (42.6%)	100 (36.2%)
	Yes	90 (66.7%)	81 (57.4%)	171 (62%)
I (or my child) had a fever	No	80 (59.3%)	64 (45.4%)	144 (52.2%)
	Yes	51 (37.8%)	77 (54.6%)	128 (46.4%)
Readmissions
Have you (or your child) been admitted to the hospital twice in the same month within the last year?	No	143 (67.8%)	301 (90.9%)	444 (81.9%)
	Yes	58 (27.5%)	29 (8.8%)	87 (16.1%)
I was unable to get the medication(s) I (or my child) needed.	No	30 (51.7%)	27 (93.1%)	57 (65.5%)
	Yes	22 (37.9%)	2 (6.9%)	24 (27.6%)
I did not feel that my (or my childs) medication was working.	No	22 (37.9%)	20 (69%)	42 (48.3%)
	Yes	34 (58.6%)	9 (31%)	43 (49.4%)
I did not have a good understanding of how often and how much of each medication I (or my child) needed.	No	48 (82.8%)	28 (96.6%)	76 (87.4%)
	Yes	4 (6.9%)	1 (3.4%)	5 (5.7%)
I did not have a good understanding of the major side effects of my (or my childs) medications.	No	46 (79.3%)	26 (89.7%)	72 (82.8%)
	Yes	5 (8.6%)	3 (10.3%)	8 (9.2%)
My (or my childs) pain was not able to be controlled at home.	No	8 (13.8%)	9 (31%)	17 (19.5%)
	Yes	48 (82.8%)	20 (69%)	68 (78.2%)
I did not have all the information I needed to manage my (or my childs) illness at home.	No	43 (74.1%)	24 (82.8%)	67 (77%)
	Yes	10 (17.2%)	5 (17.2%)	15 (17.2%)
I did not understand which warning signs and symptoms meant I should call my (or my childs) healthcare provider.	No	45 (77.6%)	25 (86.2%)	70 (80.5%)
	Yes	7 (12.1%)	4 (13.8%)	11 (12.6%)
I (or my child) had an illness unrelated to their sickle cell disease (e.g. asthma).	No	33 (56.9%)	23 (79.3%)	56 (64.4%)
	Yes	19 (32.8%)	6 (20.7%)	25 (28.7%)
I (or my child) was not healthy enough to leave the hospital during the first stay.	No	20 (34.5%)	20 (69%)	40 (46%)
	Yes	33 (56.9%)	9 (31%)	42 (48.3%)
I (or my child) had a fever	No	29 (50%)	14 (48.3%)	43 (49.4%)
	Yes	24 (41.4%)	14 (48.3%)	38 (43.7%)
Missed appointments
Have you missed an appointment for any reason over the past year?	No	26 (12.3%)	114 (34.4%)	140 (25.8%)
	Yes	183 (86.7%)	216 (65.3%)	399 (73.6%)
Reasons you missed an appointment	I forgot I had an appointment	65 (30.8%)	56 (25.9%)	121 (30.3%)
	The appointment was at a time that didn’t work for me	53 (25.1%)	42 (19.4%)	95 (23.8%)
	My health impacted my ability to make the appointment	40 (19.0%)	9 (4.2%)	49 (12.3%)
	I did not know I had an appointment	39 (18.5%)	22 (10.2%)	61 (15.3%)
	I didn’t have a way to get to the appointment	44 (20.9%)	50 (23.1%)	94 (23.6%)

^aCaregivers were asked to report for their children under 18 years.

^bPercentages may not add up to 100% because of missing data.

Table 3. Relation between reasons for missing clinic appointments and hospital admissions and readmissions.

Hospital admission in the past year
Combined
Have you missed an appointment for any reason	No	Yes
No admission	66 (57.9%)	189 (45.3%)
Admission	48 (42.1%)	228 (54.7%)
P-value	0.02
OR (95% CI)	1.66 (1.07–2.58)
Adults
Have you missed an appointment for any reason	No	Yes
No admission	11 (57.9%)	55 (30.2%)
Admission	8 (42.1%)	127 (69.8%)
P-value	0.02
OR (95% CI)	3.15 (1.09–9.57)
Children^a
Have you missed an appointment for any reason	No	Yes
No admission	55 (57.9%)	134 (57%)
Admission	40 (42.1%)	101 (43%)
P-value	0.903
OR (95% CI)	1.04 (0.62–1.73)
Readmission in the past year
Combined
Have you missed an appointment for any reason	No	Yes
No readmission	105 (92.1%)	339 (81.3%)
Readmission	9 (7.9%)	78 (18.7%)
P-value	0.004
OR (95% CI)	2.68 (1.28–6.29)
Adults
Have you missed an appointment for any reason	No	Yes
No readmission	18 (94.7%)	125 (68.7%)
Readmission	1 (5.3%)	57 (31.3%)
P-value	0.016
OR (95% CI)	8.16 (1.23–347.37)
Children^a
Have you missed an appointment for any reason	No	Yes
No readmission	87 (91.6%)	214 (91.1%)
Readmission	8 (8.4%)	21 (8.9%)
P-value	1
OR (95% CI)	1.07 (0.43–2.90)

^aCaregivers were asked to report for their children under 18 years.

Table 4. Scores on standardized measures for the adult participants (n = 531) with sickle cell disease.

Measure		Adults (N = 201)	Children^a (N = 330)	Combined (N = 531)
Patient Health Questionnaire (PHQ-2; mean/SD)		1.47 (1.56)	0.84 (1.26)	1.08 (1.41)
ENRICHD Social Support Instrument (ESSI) (n/%)	Poor	44 (20.9%)	31 (9.4%)	75 (13.8%)
	Good	157 (74.4%)	299 (90.3%)	456 (84.1%)
Brief Health Literacy Screening (n/%)	Poor	58 (27.5%)	75 (22.7%)	133 (24.5%)
	Good	143 (67.8%)	255 (77.0%)	398 (73.4%)

^aCaregivers were asked to report for their children under 18 years.

^bPercentages may not add up to 100% because of missing data.

Table 5. Logistic regression model: risk factors for hospitalization and readmissions.

Hospitalizations
Combined Model	(n = 531)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		1.1	(0.49,2.46)	0.815
Age Group	Pediatrics (<18 y/o)	0.35	(0.23,0.52)	<0.001*
Sex	Female	1.14	(0.77,1.7)	0.509
Education:	Some college or more	1.22	(0.8,1.85)	0.348
PHQ score		1.36	(1.16,1.59)	<0.001*
Ability to pay bills	Very or somewhat difficult	1.46	(0.97,2.21)	0.073†
Literacy	High	0.87	(0.53,1.43)	0.592
Spirituality	Very spiritual	0.78	(0.51,1.17)	0.224
Social Support	High	1.21	(0.66,2.22)	0.539
Adult Model	(n = 201)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		0.65	(0.14,2.96)	0.579
Age		0.99	(0.97,1.02)	0.615
Sex	Female	0.94	(0.49,1.82)	0.859
Education:	Some college or more	1.55	(0.79,3.04)	0.199
PHQ score		1.34	(1.04,1.72)	0.021*
Ability to pay bills	Very or somewhat difficult	3.11	(1.47,6.62)	0.003*
Literacy	High	1.67	(0.77,3.64)	0.193
Spirituality	Very spiritual	0.8	(0.39,1.63)	0.536
Social Support	High	1.2	(0.49,2.93)	0.691
Model about Children	(n = 330)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		0.56	(0.16,1.95)	0.365
Age		1	(0.95,1.06)	0.889
Sex	Female	1.14	(0.68,1.92)	0.628
Education:	Some college or more	1.07	(0.62,1.85)	0.8
PHQ score		1.32	(1.07,1.63)	0.011*
Ability to pay bills	Very or somewhat difficult	1.04	(0.61,1.76)	0.881
Literacy	High	0.6	(0.31,1.17)	0.135
Spirituality	Very spiritual	0.78	(0.46,1.33)	0.368
Social Support	High	1.37	(0.56,3.36)	0.493
Readmissions
Combined Model	(n = 531)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		0.26	(0.09,0.72)	0.009
Age Group	Pediatrics (<18 y/o)	0.23	(0.13,0.41)	<0.001*
Sex	Female	1.37	(0.79,2.37)	0.268
Education:	Some college or more	1.05	(0.6,1.84)	0.868
PHQ score		1.24	(1.04,1.49)	0.019*
Ability to pay bills	Very or somewhat difficult	2.4	(1.36,4.24)	0.002*
Literacy	High	1.25	(0.65,2.41)	0.504
Spirituality	Very spiritual	0.57	(0.33,0.99)	0.046*
Social Support	High	0.63	(0.32,1.28)	0.204
Adult Model	(n = 201)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		0.57	(0.11,2.87)	0.496
Age		0.98	(0.95,1.01)	0.164
Sex	Female	1.16	(0.56,2.39)	0.687
Education:	Some college or more	1.31	(0.64,2.7)	0.458
PHQ score		1.18	(0.94,1.49)	0.145
Ability to pay bills	Very or somewhat difficult	3.7	(1.76,7.79)	0.001*
Literacy	High	1.35	(0.6,3.04)	0.475
Spirituality	Very spiritual	0.39	(0.18,0.81)	0.012*
Social Support	High	0.53	(0.23,1.24)	0.146
Model about Children	(n = 330)
Variable		Odds Ratio	95% CI	Pr(>|z|)
(Intercept)		0.02	(0,0.24)	0.002
Age		1.04	(0.94,1.16)	0.432
Sex	Female	1.41	(0.55,3.66)	0.477
Education:	Some college or more	0.84	(0.32,2.24)	0.729
PHQ score		1.33	(0.96,1.84)	0.083†
Ability to pay bills	Very or somewhat difficult	1.19	(0.47,3.04)	0.711
Literacy	High	1.29	(0.38,4.36)	0.677
Spirituality	Very spiritual	0.97	(0.37,2.5)	0.944
Social Support	High	1.23	(0.25,6.13)	0.798

Note: UTHSC: University of Tennessee Health Science Center; CHO: Children’s Hospital Oakland; CCHMC: Cincinnati Children’s Hospital Medical Center.

*p < 0.05.

†p < 0.1.