Satisfaction with services Overall satisfaction

Only one respondent reported being dissatisfied with the care provided by the HCV clinic. 54% (174) were satisfied and 45% (147) were very satisfied with the care (missing for 11). The majority o f the 128 respondents who gave specific comments found the clinic staff kind and friendly and were pleased with the expert professional care but 11 (9%) found the waiting time too long and 4 (3%) would like the waiting room to be improved. Despite the high level o f overall satisfaction with the care provided, a fifth of respondents (56, 18%) made suggestions for changes or improvements to the clinic or the care provided. These mainly concerned reducing the waiting time (12) or improving the waiting areas by providing toys for the children and maintaining cleanliness (14).

A similar number (60, 20%) would like other services to be provided at or outside the clinic. These included support groups where affected families could share their experiences and offer advice to each other (13), psychological support (9), more information in general, especially during pregnancy or at the first visit (8), better care for HCV infected mothers (7), improved waiting areas and play facilities for children (5) and specialised centres in each district and better informed family doctors (4).

Whether respondents made suggestions for improvements to the clinic or other services to be provided was not associated with the age of their child.

Practicalities o f getting to clinic

The majority o f respondents (197, 63%) reported that their child saw a doctor or nurse at the HCV clinic every 3 to 6 months. 34 children (11%) were seen more often than every 3 months, 59 (19%) visited the clinic about twice a year, 15 children (4%) had annual visits and the remaining 9 (3%) were seen less than once a year (not reported for 19). Children o f indeterminate or unknown infection status visited the clinic more frequently than children with confirmed infection status (infected and uninfected) (x2, 4 df= 14.42, p=0.006). As children with confirmed infection status tend to be older, frequency o f visits was also associated with the age o f the child; children attending the clinic every 3-6 months or more often were significantly younger than those who visited the clinic twice a year or less frequently (median 1 year, range 9 days - 19 years vs. median 2 years, range 3 weeks - 18 years, z=5.60, pO.OOOl).

Nearly all parents and carers (300, 94%) were happy with the frequency o f visits to the clinic but 11 (3%) would prefer less frequent visits and 9 (3%) would prefer more frequent visits.

Most parents and carers did not have difficulties getting to the clinic (121, 37%) or found it easy (105, 32%) or very easy (44, 13%). 52 respondents (16%) found it difficult to get to the clinic while only 7 (2%) found it very difficult (missing for 4).

The main reasons for difficulties were long distance to the clinic, poor public transport, traffic or parking problems and reliance on someone to drive them to the hospital.

Some respondents who did not find it difficult to get to the clinic nevertheless mentioned problems o f traffic, public transport and long distances to travel.

Difficulties in getting to the clinic were not associated with a particular centre.

41% o f respondents (133) needed to take time o ff work to take their children to the clinic (a further 52 (16%) respondents did not work and the question was not answered in 5 cases) but only 21 (16%) found this difficult (19) or very difficult (2) to do. 52 respondents (18%) reported that their child had to take time off school to attend clinic appointments (113, 40%, indicated that their child did not go to school, information missing for 51 respondents) and this was either very easy (20), easy (15) or OK (16) to do (missing for 1). Among the children aged 6 or older, 78% (29) had to take time o ff school for clinic visits.

Provision o f information

H alf o f respondents (168, 50%) felt they needed more information about HCV infection in general. 114 (34%) would like more information about the different blood tests for HCV infection and 128 (38%) would like more information about how HCV infection is confirmed or excluded in their child. Most o f the specific comments related to wanting more information about modes o f transmission o f HCV and precautions needed to avoid transmission to others or better information to be able to interpret their child’s test results.

Respondents from non-white ethnic groups were more likely to feel that they needed more information about HCV infection in general (10/13 (77%) non-white vs. 157/313 (50%) white, x =3.58, Fisher’s exact p=0.09) and more information about the different blood tests for HCV infection (8/13 (62%) non-white vs. 105/313 (34%) white,

•y t

X =4.32, Fisher’s exact p=0.07), although these associations were o f borderline statistical significance. However, the proportion o f non-white respondents who needed

more information about how infection is confirmed or excluded in their child was not significantly higher than for white respondents.

Compared to parents/carers o f children with confirmed infection status (infected or uninfected), those with children o f unconfirmed infection status were significantly more likely to want more information on how the infection status o f their child is confirmed (81/154, 53% vs 47/179, 26%, x2=24.27, pO .OOl) and were more likely to feel they needed more information about the different blood tests for HCV infection (64/154, 42% vs 50/179, 28%, y£=6.$3t p=0.009). Nevertheless, in each case a substantial proportion o f parents felt they needed more information even though their child’s infection status had been confirmed. The proportion o f respondents who felt they needed more information about HCV infection in general was not significantly higher among those with a child o f unconfirmed infection status.

O f the 95 parents/carers o f infected children who completed the section relating to infected children, 52 (55%) respondents felt they needed more information about how their child’s health may be affected by HCV infection and 51 (54%) felt they needed more information about possible treatment for their child’s HCV infection. O f these, 41 (43%) felt they needed more information about both. The children o f respondents who felt in need o f more information were significantly younger than the children o f respondents who felt they had sufficient information [how child’s health may be affected: median age 2.9 years (range 2 months - 15 years) vs. 6.4 years (4 months - 19 years), z=-2.16, p=0.03; possible treatment: median age 2.9 years (range 2 months - 15 years) vs. 7.2 years (4 months - 19 years), z=-2.56, p=0.01].