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Table 5.37. Age of respondents recruited from Sickle Cell Society compared with those recruited from haematology clinics

Sickle cell society (n=24) Haematology clinics (n=64) Test Age. Mean (SD) 14.2 (2.4) 14.2 (2.1) t=0.13 df-86 p=0.90

Table 5.37 shows no difference in mean age between subjects recruited from the Sickle Cell Society or haematology clinics.

Table 5.38. Gender of respondents recruited from Sickle Cell Society compared with those recruited from haematology clinics

Sickle cell society (n=24) Haematology clinics (n=66) Test Gender Male N(%) Female N(%) 9 (19.6) 15 (34.1) 37 (80.4) 29 (65.9) χ=2.4 df=1 p=0.15

Table 5.38 shows more males were recruited from clinics and more girls from the Sickle Cell Society but the percentage differences are not statistically significant.

Table 5.39. Association between Socioeconomic status (OPCS) and whether respondents were recruited through a haematology clinic or Sickle Cell Society

To test this association, the six categories of the OPCS were collapsed into three categories by combining categories 1 and 2, 3 and 4, 5 and 6 in order to reduce the number of cells with small or no numbers. As shown in Table 5.39 below, there was no statistically significant association between these OPCS-SES categories and source of recruitment.

OPCS-SES categories

Sickle cell society (n=20) N(%) Haematology clinics (n=60) N(%) Test 1&2 3 (15) 22 (36.7) 3&4 13 (65) 32 (53.3) 5&6 4 (20) 6 (10) χ = 3.8 df=2 p=0.15

However, given that the six OPCS-SES categories represent an ordinal scale, the association was also tested by calculating the Spearman rho correlation coefficient between the full six-category OPCS-SES (coded as in Table 5.5) and the two categories of source of recruitment (coded as haematology clinics = 1, Sickle Cell Society = 2).The Spearman rho correlation coefficient (n=80, r = 0.3) was statistically significant (p=0.006). The coding frame indicates that respondents recruited from haematology clinics were more likely to come from households headed by someone in a higher professional status compared with the children recruited from Sickle Cell Society.

Table 5.40 Comparison between respondents recruited from Sickle Cell Society and those recruited from haematology clinics on whether or not they were born in the UK

Sickle cell society (n=24) Haematology clinics (n=67) Test Born in the UK Yes N(%) No N(%) 15 (21.7) 9 (40.9) 54 (78.3) 13 (59.1) χ=3.1 df=1 p=0.10

Table 5.40 shows that a higher percentage of the subjects born in the UK were recruited from the haematology clinics compared with respondents who were not born in the UK. However, the difference was not significant.

Table 5.41. Self-perceived stigma among respondents recruited through haematology clinics or Sickle Cell Society

Given that the Sickle Cell Society is an advocacy organisation, people with SCD who are members could be a self select group that have a more positive attitude toward SCD and be less likely to perceive stigmatisation. This premise justifies exploring whether fewer children from among those recruited through the Sickle Cell Society were classified as having self perceived stigma compared with those recruited from haematology clinics.

Sickle cell society (n=24)

Haematology clinics (n=67)

Test

Self perceived stigma Yes N(%) No N(%) 3 (21.4) 21 (27.3) 11 (78.6) 56 (72.7) Fisher’s Exact p=0.75

Table 5.41 above shows that there is no significant association between source of recruitment and classification as having self-perceived stigma.

Table 5.42. Association between stigma and whether respondents completed questionnaire in clinic or at home

Theoretically, young people completing questionnaires in clinic may be more likely to report self-perceived stigma as their attendance to the clinic while their peers are at school or engaging in other activities could become a symbolic reminder of the disruptive effect of having SCD.

Perceived Stigma (n=13) No or low perceived stigma (n=74) Test

Where questionnaire was completed Homes N (%) Clinic N (%) 6 (11.8) 7 (19.4) 45 (88.2) 29 (80.6) χ = 1.0 df=1 p=0.4

Table 5.42 shows no significant association between stigma and whether respondents completed questionnaires in haematology clinics or at home.

Table 5.43. Comparison of depressive symptoms between respondents from Sickle Cell Society and haematology clinics

Sickle cell society (n=23) Haematology clinics (n=65) Test Depressive symptoms (SMFQ) Mean (SD) 3.4 (2.8) 4.8 (4.2) t=1.5 df=86 p=0.08

Table 5.43 shows that the children recruited from haematology clinics scored higher on the SMFQ than those recruited from Sickle Cell Society but the difference was not statistically significant.

Table 5.44. Comparison of Total Difficulties Scale of the SDQ between respondents from Sickle Cell Society and haematology clinics

Sickle cell society (n=23)

Haematology clinics (n=55)

Test

Total Difficulties Scale of the SDQ.

Mean (SD) 11.0 (5.1) 10.6 (5.5) t=-0.26

df=76 p=0.79

Table 5.44 shows that the children recruited from haematology clinics did not differ in their score on the Total Difficulties scale of the SDQ compared with those recruited from

Sickle Cell Society. Also they did not differ significantly on any of the five SDQ subscales (data not shown).

Table 5.45. Comparison of self esteem between respondents from Sickle Cell Society and haematology clinics

Sickle cell society (n=23)

Haematology clinics (n=57)

Test

Rosenberg Self Esteem Scale Mean

(SD) 33.7 (3.7) 31.2 (5.3) t=-2.1

df=78 p=0.04

Table 5.45 shows that the children recruited from haematology clinics scored lower on the Rosenberg Self Esteem scale compared with those recruited from Sickle Cell Society and the difference is statistically significant (p=0.04).

Table 5.46. Comparison of Attitude towards illness between respondents from Sickle Cell Society and haematology clinics

Sickle cell society (n=23)

Haematology clinics (n=65)

Test

Attitude toward illness (CATIS score) Mean (SD)

40.6 (11.5) 40.3 (10.3) t=-0.12

df=86 p=0.91

Table 5.46 shows that the children recruited from haematology clinics did not differ in their attitude towards SCD compared with those recruited from Sickle Cell Society.

Table 5.47. Receipt of counselling among respondents recruited from Sickle Cell Society compared with those recruited from haematology clinics

Sickle cell society (n=24) Haematology clinics (n=76) Test Counselling Yes N(%) No N(%) 2 (20.0) 22 (27.5) 8 (80.0) 58 (72.5) Fisher’s Exact p=1.0

Table 5.47 shows no significant difference in the percentage of respondents recruited from Sickle Cell Society who were receiving counselling compared with those recruited from haematology clinics.

Table 5.48. Comparison of family function between respondents from Sickle Cell Society and haematology clinics

Sickle cell society (n=22)

Haematology clinics (n=57)

Test

Family Assessment Device (FAD) – General Function Scale (raw score) Mean (SD)

20.5 (4.5) 20.9 (5.3) t=0.28

df=77 p=0.78

Table 5.48 shows that the children recruited from haematology clinics did not differ in family function compared with those recruited from Sickle Cell Society.

Table 5.49. Association between frequency of admission and whether respondents were recruited through a clinic or Sickle Cell Society

Frequency of ward admission in past year

Sickle cell society (n=23) N(%) Haematology clinics (n=65) N(%) Test No admission 11 (47.8) 23 (35.4) Once 3 (13.0) 12 (18.5) 2-4 times 4 (17.4) 21 (32.3) 5-6 times 3 (13.0) 5 (7.7) 7-10 0 2 (3.1) >10 times 2 (8.7) 2 (3.1) χ = 4.7 df=5 p=0.5

Table 5.49 shows no statistically significant association in frequency of ward admission (a measure of severity) between respondents recruited through Sickle Cell Society and those recruited from haematology clinics.

Summary of unadjusted bivariate comparisons between respondents recruited from Sickle cell society and those recruited from haematology clinics

In summary, the results of the analysis for this section show that the subjects recruited from the Sickle Cell Society differed only on two items (OPCS-SES status and Self- esteem) from those recruited from haematology clinics. Respondents recruited from the Sickle Cell Society were more likely to come from families with lower SES. However, they were more likely to have higher self-esteem. The two groups did not differ significantly on age, gender, whether or not born in the UK, levels of self- perceived stigma, whether they completed the questionnaire at home or in the clinic, depressive symptoms, Total Difficulties scale or subscales of the SDQ, receipt of counselling, family function, or frequency of ward admissions (measure of severity).