Ismail K Jalili

FRCS, DO, FRCOphth

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12 Patients and Sibships
I K Jalili
12.1   Patients: source and status

12.2   Age composition

 
12.3   Gender  
12.4   Pedigrees and sibships
12.5   Religeous background

12.6    Schools and institutions

References

12.1

Patients Source and Status

The Blind Schools Survey encompassed initially pupils and trainees in the blind schools and schools’ workshops and incumbents of residential homes. Children on schools’ waiting lists and relatives of the affected pupils were later included to ensure a meaningful assessment of the genetic conditions encountered. After the completion of the survey, patients who met the criteria of childhood onset visual impairment were added to the register. Table 14.1 shows a breakdown of the source and status of the cases by region.

Forty cases of the 709 registered in the study did not fulfil the criteria of childhood onset bilateral visual impairment and were excluded, thus leaving 669 patients for inclusion in the analysis. (Table 12.1)

Of the 669 cases who fulfilled the study criteria, 347 originated from the West Bank and 289 from Gaza Strip. There were an additional 33 patients who come from either region but their exact location was not possible to ascertain. (Table 12.1)

     

 Table 12.1  Cases by status and region.

 

Status

M

F

Total

M/F

Mean

West Bank

 

 

 

 

 

Pupils

69

60

129

1.1

3 – 19.5 (13)

Workshops

1

8

9

0.1

12 - 40 (2407)

Residents

13

32

45

0.4

2.4 – 60 (27)

Outpatients

61

52

113

1.2

0.6 – 46 (11)

Relatives

26

21

47

1.25

1 – 60 (20)

Gaza Strip

 

 

 

 

 

Pupils

49

33

82

1.5

4.5 - 20 (12)

Workshops

5

9

14

0.5

20 - 27 (23)

Residents

  3

 5

 8

0.6

2.6 - 83 (5)

Outpatients

44

 20

64

2

0.7 - 57 (5)

Relatives

63

33

96

2

0.6 - 83 (20)

Both Regions*

 

 

 

 

Pupils

119

93

215

1.3

3 – 20 (12.6)

Workshops

6

17

25

0.3

12 – 40 (24.5)

Residents

7

41

48

0.2

2.4 - 83 (27)

Outpatients

122

80

202

1.5

0.6 - 57 (22)

Relatives

89

134

223

0.6

0.6 – 83 (12)


* Includes 33 cases whose families’ live in either regions but exact location is unspecified.

 

Figure 12.1 Demography of the 669 cases in the survey with childhood onset visual impairment.
 

 

 

 

 

 

 

 

 

12.2 Age Composition


Children <16 at the date of the completion of the survey formed 62% of the total number; in the West Bank 58% and 57% in the Gaza Strip. The proportion of each age cohort in the survey in comparison to the corresponding age cohorts in the general population at the time of the survey is given in Table 12.2 and Figure 12.2.

Figure 12.2 Graphic representation of the correlation between < 5 years age cohort in the survey populations with the general population of the West Bank and Gaza Strip in 5 yearly age-cohort
 

Table 12.2  Correlation of the survey population with the corresponding cohorts in the general population.

Age Cohorts

West Bank

Gaza Strip

Others

Total

< 6

63

18.2

16

56

19.4

18

13

39.4

16

132

19.7

16

6 to 10

72

20.7

13

59

20.4

15

8

24.2

14

139

20.8

14

11 to 15

79

22.8

11

49

17

11

6

18.2

11

134

20

11

16 to 20

64

18.4

12

46

16

9.7

2

6

11

112

16.7

11

21 to 25

22

6.3

8.7

30

10.4

8.8

1

3

8.8

53

8

8.8

26 to 30

18

5.2

5

12

4.2

7.4

3

9

5.8

33

5

5.8

31 to 35

4

1.2

3.6

7

2.4

5

0

-

4.1

11

1.6

4

36 to 40

8

2.3

3.4

7

2.4

3

0

-

3.2

15

2.2

3.2

41 to 45

6

1.7

3.2

10

3.5

2.4

0

-

2.9

16

2.4

3

46 to 50

1

0.3

3.1

6

2.1

2.2

0

-

2.8

7

1

2.8

51 to 55

5

1.4

2.7

-

-

2.3

0

-

2.6

5

0.7

2.6

56 to 60

1

0.3

2

1

0.3

2.1

0

-

2

2

0.3

2

61 to 65

1

0.3

1.4

2

0.7

1.4

0

-

1.4

3

0.4

1.4

66+

3

1

3.5

4

1.4

2.5

0

-

3.1

7

1

3

Total

347

100

100

289

100

100

33

100

100

669

100

100

 Grouped Cohorts

<16

214

61.7

42

164

56.7

46

27

81.8

43

405

60.5

43

<18

247

71.2

-

184

63.7

-

19

57.6

-

458

68.4

-

<20 All

278

62.0

52

210

53.3

53

29

48.5

52

517

57.5

52

16+

133

38.3

48

125

43.3

47

6

18.2

48

264

39.5

48

12.3 Gender

There was a preponderance of males in the total series with 367 (55%) males and 302 (45%) females (M:F 1.44:1). (Tables 12.2 and 12.3)


In the West Bank, there are an almost equal proportion of both genders with 170 (49.5%) males and 177 (50.5%) females (M:F 0.98:1), which equates to the ratio in the general population.


In the Gaza Strip, there are 176 males and 113 females (M:F 1.54:1). This disparity is observed in all age cohorts but it peaks in the < 5 and 16-20 years. In school age pupils, the gap diminishes to 1:15.


Many of the older females, were recruited from the training centres’ and the school waiting list. The former were essentially female adults working in the workshops, the outpatient cohort and relatives of all above. The training centres were an UNRWA Training Centre for the Blind in Gaza and the second was based at the blind school in Nablus.


There is a high preponderance of males in the non-hereditary cases in both the West Bank and Gaza Strip with a sex ratio of 1.8:1 and 1.5:1 respectively. (See aetiological classifications).

Table 12.3  M:F ratios by age cohort and region.

Age

West Bank

Gaza Strip

Total
(including 33 cases of uncertain origin)

M

F

M:F

Pop.a

M

F

M:F

Pop.

M

F

M:F

Pop.

< 5 a

27

23

1.2

1.1

31

14

2.2

1.1

68

41

1.6

1.1

5-15

80

70

1.1

1.1

59

50

1.2

1.1

147

127

1.6

1.1

6-18

129

118

1.1

-

113

71

1.6

-

260

198

1.3

-

<16

113

101

1.1

1.1

97

67

1.4

1.1

228

177

1.3

1.1

16-20 a

28

26

1.1

1.1

26

8

3.2

1.1

54

35

1.5

1.1

Total

170

177

1

0.88

176

113

1.6

1

367

302

1.2

0.9


Numbers and ages are as at the end of the study. Pop. = M:F  ratio in general population.
  Population figures are for the < 4 and 15-19 years cohorts can also be applied to the age group as the ratio of 1.1:1 is consistent in all the < 24 years old population.

b  Population ratios are those of  the 21+ years old population

 

12.4

Pedigrees and Sibships

The total number of pedigrees (Arabic: Hamoula) in the series was 391, comprising 458 sibships. (Table 12.4) Nearly two thirds (58%, n=228) of the pedigrees were resident in the West Bank and one third (34%, n=131) in the Gaza Strip. There were 33 whose residence was not determined clearly.


The ratio of pedigrees between the West Bank/Gaza Strip is almost identical to that of the population between the two regions at 1.78:1. When the same ratio is applied to sibships and pedigrees, it drops to 1.5:1 for sibships and 1.2:1 for pedigrees (extended genetic families) thus reflecting the larger numbers of sibships and consequently of patients in the Gaza Strip.


Figure 12.3 demonstrates this graphically but for the purpose of a better visual impact the ratio was reversed using Gaza Strip/West Bank ratio outcome. In this figure the first column on the left represents the ratio of Gaza Strip/West Bank population, which is 0.56:1. Ratios of pedigrees, sibships and patients are shown in the subsequent columns.
 

The highest proportion of cases in the series were villagers totalling 269 (40%), followed by town residents 223 (33%) and camps 111 (17%). This. however, does not necessarily imply a refugee status of the individuals. (Table 12.5)

Table 12.4  Pedigrees (extended families), sibships and patients by region.

Region

Patients

Sibships

Pedigrees

West Bank

347

52

256

56

228

58

Gaza Strip

289

43

170

37

131

33

Unidentified

23

3.4

24

5

24

6

Israel

9

1.3

8

2

8

2

Total

669

100

458

100

391

100

West Bank/Gaza Strip

1,2

1.5

1.75

Percentages in bold italic

Table 12.5  Cases by type of residence

 

Nos.       

%

Villagers

269

 40%

Town

223

33%

Camp

111

17%

N/A

66

10%

Total

669

100

N/A: not  available

 

Figure 12.3  Comparison of ratios of Gaza Strip/West Bank of general  population (as a crude baseline control figure) and the Gaza Strip/West Bank ratio of the specified parameters: pedigrees, sibships and patients in the total series of 699 cases

 

12.5

Patients by Religious Background

Muslims by birth formed the vast majority of cases (659, 98%), the remaining 10 (2%) being Christians. Three of the elderly Christians had converted to Christianity at their residential home.

12.6 Schools and Institutes

 

Blind institutes in the West Bank comprised 3 primary schools for girls funded by local and international charities and 1 school for boys which provided both primary and secondary education and was funded by the Department of Education. The former 3 also accommodated very young boys. The remaining 2 institutions were residential for all disabilities and housed older students in higher education. The primary school in Nablus also contained a workshop for older girls who did not proceed to higher education.

For breakdown of schools and institutes refer to appendix A of methodology (Chapter’s 10).

Ismail K Jalili 2000-2016