Demographic Information.

Profile of the study area.

This study took place in the outer London Borough of Brent, which is in the north west of the capital. Brent is characterised by a high proportion of ethnic minority residents, and also b y a high proportion of young people aged 15 -29 years. According to the last census in 1981, 33.5% of the population of Brent were either from or descended from the New Commonwealth and Pakistan (as defined b y the birth place of the head of household). A further 11.3% w e r e Irish, and 9% originated from other countries around the world, leaving a total of 46.2% born in the UK, or descended from parents b orn in the UK.

In 1988, the age distribution of Brent showed a pea k b e t ween the ages of 15 and 29 years, which was more marked than the national

picture (Brent Health Authority Report 1988). Brent also had a high level of social disadvantage, as indicated by the Jarman Index (Jarman 1983), which includes factors such as the pr o p o r t i o n of unemployed, ethnic minorities, under 5's, one parent families and

The social class distribution in Brent as recorded for the 1981 census, showed the greatest proportion of residents to be in social class III (48%), with twice the number of manual to non-manual workers in this group (OPCS 1981 Census). Approximately one-third of those living in Brent at this time were in the top two social classes, and 22% were in social classes IV and V.

Demographic details of the study participants.

The demographic details of the sample are shown in Table 2. Proportions of male and female participants in the study were similar. More than half of the subjects (both those with diabetes and controls) were Caucasian. Approximately one third of the diabetic group were of Asian origin, with over 70% born outside the U.K., although more than half of these subjects m oved to the U.K. early on in life, at least before school-age. Although only 4 healthy controls were of Asian origin, this did not reflect a higher rate of refusal by these young people, but was due to the comparatively small number of Asians registered at the particular general practice used for the study.

Just over one third of the control group were comprised of Afro-

Caribbean subjects, who were mainly born in the U.K. The mean age (+ SD) of the subjects was 21 ( + 3 ) years. Ove r 80% of both the diabetic subjects and their controls were single and were currently living at home with one or more parent at the time of the interview.

rapxe z z sample cnaracteriBtics.

Diabetic Subjects Controls Total

n (%) n (%) n _(%) Sex Males 19 (48) 19 (48) 38 (48) Females 21 (52) 21 (52) 42 (52) Ethnic Caucasians 22 (55) 21 (52) 43 (54) Afro/Caribbeans 6 (15) * 15 (38) 21 (26) Group Asians 12 (30) * 4 (10) 16 (20) Social H H H 8 (20) 11 (28) 19 (24) Class IIINM 29 (73) 20 (50) 49 (61) H I M , IV 3 (7) 9 (22) 11 (14) Marital Single 33 (83) 35 (88) 68 (85) Status Married 1 (2) 4 (10) 5 (6) Cohabiting 6 (15) 1 (2) 7

₍₉₎

Housing Owner Occs. 24 (60) 16 (40) 40 (50)

Tenure Private rent. 9 (23) 5 (12) 14 (18)

Council Rent. 7 (17) * 19 (48) 26 (32)

in m e group witn aiaoetes, Caucasians were signiricanriy less likely to be living at home compared with Afro-Caribbeans and Asians (41% vs 83% vs 83% ; p<0.05). There was no such difference in the healthy control group. For the total sample, subjects who had left home at the time of interview were significantly older than those who were still living at home (23.0 + 1.8 yrs vs 20.5 + 3.0 yrs ; pcO.OOl). A similar observation was made when the group w ith diabetes and the healthy controls were analysed separately.

Social class, as measured by subjects' or parents' occupation, did not differ between subjects with diabetes and controls. Over half of those with diabetes (60%) lived in housing that was owner occupied, usually by their parents. Of the remainder, approximately half lived in local authority (council) housing and half in privately rented homes. Fewer controls (40%) lived in owner occupied homes, while the remainder were more likely to rent accomodation from their local authority compared to subjects with diabetes (p<0.05). Only a small proportion of control subjects (12%) rented their homes privately. Housing tenure was not influenced by ethnic group in this study.

Ethnic group was not significantly associated w ith subjects' social class as defined by either their own (if employed) or their parent's

occupation. However, w hen parents' occupation alone was taken as the indicator of subjects' social class position, a greater proportion of Asian subjects were in social classes I, and II (77%), compared with both Afro-Caribbean subjects (12%) and Caucasians (23%). This

difference remained significant when the controls were analysed separately and a non-significant trend was evident for the diabetic subjects.

A greater proportion of subjects with diabetes were still in full time education compared to the control group (25% vs 15% n/s), as shown in Figure 1 below. At the time of interview, there were no significant differences in employment status between those wit h diabetes and healthy controls. Of those subjects who had left school, 40% of people with diabetes had experienced some unemployment, compared with 53% of controls (n/s).

Key: F/T E DUC = Full-time education P/T EDUC = Part-time education

State of health in young adults w ith diabetes.

All subjects with diabetes who participated in the study were insulin-dependent. To fulfill the accepted criteria for insulin- dependent diabetes, a patient had to have been diagnosed prior to the age of 31 years (which included all potential subjects anyway)

and must have commenced insulin therapy within one year of diagnosis (Head and Fuller 1991).

Age at the time of diagnosis of diabetes ranged from 3.8 to 23.3 years, with a mean duration of the disease at the time of interview for the whole group of 7.5 (+ 5.2) years (range: 9mths to 19yrs). Half of these subjects were diagnosed before the age of 13, with a further 25% diagnosed between 13 and 16 years of age and the remaining 25% being diagnosed over the age of 16. Ag e at time of diagnosis was not associated with either ethnic origin or sex.

Ghb measurements, taken from subjects' case-notes, gave a m e a n value of 12.2%. The lowest Ghb recorded was 5.4% and the highest was 31.3% (normal range: 3.5 - 8.0). The average number of increases in

insulin dosage ('doses-up') recorded for those who attended out­ patients was less than one during the year prior to interview, as was the average number of hospital admissions. Those who had had 'doses-up' were significantly younger compared to those wh o had not

had increases in insulin dose (19.6 + 3.1 yrs vs 21.8 + 2.6 yrs; p<0.05) and had a somewhat shorter duration of diabetes (8.6 + 5.0 yrs vs 5.5 + 5.4 yrs; p=0.09). Mean systolic blood pressure for all subjects with diabetes was 125.7 ( + 13.0) mm/Hg and m e a n diastolic b lood pressure was 76.3 ( + 1 0 . 5 ) mm/Hg.

Case-note analysis revealed that 15 (38%) had already developed one or more diabetic complications by the time of interview (see Table 4). There were no differences in the prevalence of diabetic complications in terms of sex or ethnic group. The most common complications recorded were the presence of proteinuria and the development of retinopathy. Ghb, although higher in the group who had complications, was not significantly different in comparison w ith those who did not have complications (14.2% vs 12.3% ; n/s). The mean number of Ghb measurements taken during the previous year

was 1.4 ( + 1 . 5 ) , and the mean number of blood glucose measurements taken at clinic appointments was 2.1 ( + 2 . 4 ) . The average number of months between last recorded Ghb and interview was 3.3 (+ 4.1) months, and for blood glucose it was 1.3 ( + 3 . 9 ) months.

M ean systolic and diastolic blood pressures, number of 'doses-ups' and hospital admissions did not differ between those diabetic patients who had complications and those who did not. Patients with complications were somewhat more likely to have had their diabetes diagnosed at a younger age compared with patients who did not have complications, but this was not statistically significant (12.9 + 4.9 yrs vs 14.1 + 4.4 yrs).

Table 4: Frequency of diabetic complications. # Type of Complication n Retinopathy 6 Impaired visual 4 acuity Proteinuria 6 Autonomic neuropathy 1 Peripheral neuropathy 1

Total number of subjects 15

w ith complications

# Subjects may have more than one complication

The average number of clinic attendances during the 12 months prior to interview was three, however four of the participants in this study did not attend clinic and obtained their insulin supplies from their 6 . P. These subjects reported dissatisfaction w i t h the diabetic out-patient system, complaining of long waiting times, seeing a

different doctor every time, and general feelings of just 'being a number' or being 'herded about like cattle':

D027: "At the clinic everyone's older than you wh i c h I don't mind but they look at you, pitying you. A n d you are there for two to three hours, and then you go in and see a doctor w h o m you've never seen in your life before, and you're trying to have a conversation with him and he's trying to find out about you and in five, ten minutes you're gone. And you get a ticking off for not controlling your sugar or h e '11 bring something up about pregnancy or something, and you think 'what the hell', and then you're gone and he says 'please look after y o u r s e l f ', and you say 'yes d o c t o r ', and you know you're going to see someone else next time"

It may be difficult to come to any firm conclusions about the type of patient who is a regular attender at out-patients. Those who do attend m ay be more likely to be in poor metabolic control, although information on Ghb for the non-attenders was not available in the present study. Alternatively, those who attend out-patients could be more motivated in terms of self-care, although it m a y be unwise to generalise about the behaviour of this group of patients. In the present study those who did not attend were no more likely to be male than female, and did not differ from those w h o did attend hospital out-patients in terms of their ethnic origin or social class. Although numbers were small, those who did not attend were no more likely to have complications compared with those wh o did attend the clinic.

«*. o n e g a t i v e e v a l u a t i o n o r s e n - rnss

Subjects with diabetes were significantly m ore likely to have Negative Evaluation of Self (NES) compared to healthy controls (see Table 5). Negative Evaluation of Self, or NES, was defined by a composite score for which subjects had to score high or moderate on one (or more) of three separate scales which measured a) degree of self-acceptance, b) degree of negative evaluation of attributed

self-definition and c) degree of negative evaluation of general self-definition. These different scales are described in m ore detail below.

In a matched pairs analysis, 12 subjects with diabetes had NES when their matched controls did not, compared with 3 healthy controls who had NES when their matched diabetic subjects did not (p<0.05).

(see Table 5).

Table 5: M c N e m a r 's test to evaluate the level of agreement between each pair of subjects for the presence of NES.

DIABETIC SUBJECTS