Table of Contents

HK J Paediatr (New Series)
Vol 10. No. 1, 2005

HK J Paediatr (New Series) 2005;10:34-43

Occasional Survey

What do the Parents Think?: A Pilot Survey on the Health Service for Children With Down Syndrome in Hong Kong

KL Yam, CB Chow, JTF Lau, CM Yu


Abstract

Objective: This survey aimed at reflecting the health service for children with Down Syndrome in Hong Kong from the parents' perspective. Method: Ninety-eight questionnaires were collected from families with children aged 0-18 years old during the Annual Meeting of the Hong Kong Down Syndrome Association in 1999. Medical and allied health services, educational provisions, surveillance and assessment programmes were analysed. The utilisation pattern, referral time, follow up frequency and satisfaction ratings were reported. The necessity and accessibility of the services were ranked. Results: Utilisation of various services was reported. Most parents of Down Syndrome were satisfied with the current service provisions. Educational assistance and assessment service were regarded as highly necessary. Services provided by Physiotherapy, Occupational Therapy, Speech Therapy were perceived as necessary but difficult to access. This descriptive pilot study provided important information for consideration by health service providers in Hong Kong.

Keyword : Down Syndrome; Health service


Abstract in Chinese

Introduction

Medical management, developmental training and education significantly affect the level of functioning in children with Down Syndrome and specific protocol for the health supervision of these children is available.1 Paediatricians are in the strategic position of monitoring the health and development of children, and should therefore play a major role in addressing these concerns.1,2 Study of the current situation in Hong Kong is an important prerequisite for paediatricians to fulfill their duty. Unfortunately, no local study is available. The aim of our study was to provide information on the current service provisions from the perspective of our end-users in Hong Kong.

Method and Subjects

Convenience sampling method was used and the survey was based on a cross-sectional sample. Questionnaires were distributed and collected during the Annual Meeting of the Hong Kong Down Syndrome Association in November 1999. Hong Kong Down Syndrome Association is the single non-government organisation dedicated for persons with Down Syndrome in Hong Kong. Members of the Association are recruited from all over the territory. There were 124 families with children aged 0 to 18 years old present at the Annual Meeting. The families were invited to participate in our survey. They were asked to fill in and return the questionnaire during the Annual Meeting. Assistance was given to the parents if they were illiterate but specific interpretations on the questions were avoided. A sample size of 98 was obtained. The response rate was 79%.

Since no validated questionnaire suitable for our purpose was available from the literature, a questionnaire was designed by a panel of paediatricians and epidemiologist with special interest in Down Syndrome (Appendix). Respondents were asked whether the children had ever used and were still using the services. Relevant services included those provided by different medical and allied health services, educational provisions, surveillance and assessment programmes. Medical services were further divided into those provided mainly by paediatricians (in the General Paediatric Clinics, Subspecialty Paediatric Clinics, Down Syndrome Clinics and Grantham Hospital), by family physicians and by other specialists (in the Surgical Clinics, Orthopaedic Clinics, Ophthalmologic Clinics, ENT Clinics, Dental Clinics, Psychiatry Clinics, Genetic Clinics and Other Clinics). In view of the small sample size in the Surgical Clinics, Orthopaedic Clinics and Psychiatry Clinics, these were later grouped into Other Clinics for analysis. Allied health services included Physiotherapy (PT), Occupational Therapy (OT), Speech Therapy (ST), Medical Social Work (MSW) and other Social Work (other SW). Education provisions included early educational training centres (EETC), normal nurseries, integrated child care centres (ICCC), special child care centres (SCCC), normal primary schools, special primary schools, normal secondary schools and special secondary schools. Health surveillance was provided by family health service (FHS), student health programme (SHP) and student dental health programme (SDHP). Child assessment service (CAS) and special education department (SED) provided assessment for these children.

Satisfaction of our end-users was classified into five categories: very satisfied, satisfied, average unsatisfied and very unsatisfied. The five categories were later aggregated into three categories: satisfied, average and unsatisfied for presentation. The referral time and follow up interval were reported. The perceived need and difficulty in accessibility were classified into three categories: marked, average and minimal. Ranking was done according to the percentage of parents indicating the service as the most needed and most difficult to access. Because of the difficulty of ranking among too many services, the services were aggregated into the following categories: medical service, allied health service, educational provisions, surveillance and assessment programmes. The allied health service was further subdivided into the following categories: Physiotherapy, Occupational Therapy, Speech Therapy, Medical Social Work and other Social Work.

Results

The median age of the children in the sample was 10.2 years (0.75 year to 17.95 years). Fifty-eight (59%) of the children were boys and 40 (41%) were girls (Table 1).

Table 1 Distribution of sex and age of the children
  Sex Number Mean Standard deviation Median Range
Age (in years) Male 58 9.66 4.28 9.82 1.39 - 17.42
  Female 40 10.14 4.74 10.81 0.75 - 17.95
  Total 98 9.85 4.46 10.20 0.75 - 17.95

The utilisation of various services was shown in Table 2. Among medical service, 83%, 65% and 61% of all the children had ever attended the Paediatric Clinics, the Ophthalmologic Clinics and the ENT Clinics respectively. Only 39% had ever attended the Dental Clinics and 23% the Genetic Clinics. Most of the ever users were still current users of these services, with the exception of the Genetic Clinics. For allied health services, only about half of the children had ever received services from physiotherapy, occupational therapy, speech therapy and medical social work. Most of the children required some sort of special education provisions. Only 5% of the children had attended a normal nursery and less than 1% a normal primary or secondary school. More than half of the children had ever used the surveillance and assessment services.

Table 2 Prevalence of utilization for various services
  n (% of total) ever used the service (Current +Past) n (% of total) currently using the service n (% of ever user) currently using the service
Paediatricians and family physicians
General Paediatric Clinics 47 (48%) 32 (33%) 68%
Subspecialty Paediatric Clinics 30 (31%) 24 (24%) 80%
Down Syndrome Clinics 27 (28%) 24 (24%) 86%
Grantham Hospital 19 (19%) 15 (15%) 79%
Any one of the four above 81 (83%) 72 (73%) 89%
Family Physicians 39 (40%) 21 (21%) 54%
Other specialists
Ophthalmologic Clinics 64 (65%) 57 (58%) 89%
ENT Clinics 60 (61%) 44 (45%) 73%
Dental Clinics 38 (39%) 28 (29%) 74%
Genetic Clinics 23 (23%) 1 (1%) 4%
Other Clinics 34 (35%) 18 (18%) 53%
Allied health professionals
PT 58 (59%) 24 (24%) 41%
OT 52 (53%) 16 (16%) 31%
ST 54 (55%) 19 (19%) 35%
MSW 41 (42%) 9 (9%) 22%
Other SW 26 (27%) 17 (17%) 65%
Educational provisions
EETC 80 (81%) 11 (11%) 14%
Normal Nurseries 5 (5%) 2 (2%) 40%
ICCC 49 (50%) 6 (6%) 12%
SCCC 30 (31%) 7 (7%) 23%
Normal Primary Schools 0 (0%) 0 (0%) 0%
Special Primary Schools 71 (72%) 46 (47%) 65%
Normal Secondary Schools 1 (1%) 1 (1%) 100%
Special Secondary Schools 17 (17%) 14 (14%) 82%
Surveillance and assessment centres
FHS 51 (52%) 3 (3%) 6%
SHP 53 (54%) 31 (32%) 58%
SDHP 63 (64%) 38 (38%) 60%
CAS 67 (68%) 11 (11%) 16%
SED 58 (59%) 8 (8%) 14%
PT: physiotherapy; OT: occupational therapy; ST: speech therapy; MSW: medical social work; Other SW: other social work; EETC: early educational training centers; ICCC: integrated child care centers; SCCC: special child care centers; FHS: family health service; SHP: student health programme; SDHP: student dental health programme; CAS: child assessment service; SED: special educational department

The satisfaction data given to various service provisions were shown in Table 3. In general, more than half of the parents was satisfied with the various service provisions and around 5% were unsatisfied. Among the services delivered by paediatricians and family physicians, 92% were satisfied with the Down Syndrome Clinics and 4% were unsatisfied; 83% were satisfied with the Grantham Hospital and 11% were unsatisfied. None felt unsatisfied with the family physicians. Among the various specialist clinics, 50% and 45% were satisfied with the Ophthalmologic Clinics and the Genetic Clinics respectively and 11% were unsatisfied with either clinic. Among the services delivered by the allied health professionals, none were unsatisfied with physiotherapists, occupational therapists or other social workers, but nearly one-fifth (18%) were unsatisfied with the medical social workers. Around 80% were satisfied with the various educational provisions and around 5% were unsatisfied. Less than 5% were unsatisfied with the surveillance and assessment services.

The referral times of various service provisions and the follow up interval were shown in Table 4. After excluding the data from family physicians and the Genetic Clinics (where there was only one respondent each), the median referral time was one to two months for services provided

by paediatricians, two to four months for services provided by other specialists or allied health professionals, and markedly variable for surveillance and assessment services. The median follow up interval was around six months for most medical services, around one to two weeks for most allied health services, and around one year for surveillance and assessment services. This part of analysis was not applicable to the educational services.

The perceived necessity and difficulty of accessing to various service provisions were shown in Table 5. The three most needed services were educational assistance, Speech Therapy and assessment service. The three services most difficult to access were Speech Therapy, Occupational Therapy and Physiotherapy.

Table 3 Satisfaction for various services perceived by parents of ever-users
  N Satisfied number (%) Average number (%) Unsatisfied number (%)
Paediatricians and family physicians
General Paediatric Clinics 39 20 (52%) 16 (41%) 3 (8%)
Subspecialty Paediatric Clinics 27 16 (59%) 9 (33%) 2 (7%)
Down Syndrome Clinics 24 22 (92%) 1 (4%) 1 (4%)
Grantham Hospital 18 15 (83%) 1 (6%) 2 (11%)
Family Physicians 36 28 (77%) 8 (22%) 0 (0%)
Other specialists
Ophthalmologic Clinics 44 22 (50%) 18 (41%) 5 (11%)
ENT Clinics 45 26 (58%) 17 (38%) 2 (4%)
Dental Clinics 29 17 (58%) 11 (38%) 1 (3%)
Genetic Clinics 18 8 (45%) 8 (44%) 2 (11%)
Other Clinics 23 15 (65%) 7 (30%) 1 (4%)
Allied health professionals
PT 53 35 (66%) 18 (34%) 0 (0%)
OT 48 27 (56%) 21 (44%) 0 (0%)
ST 49 27 (55%) 20 (41%) 2 (4%)
MSW 34 17 (50%) 11 (32%) 6 (18%)
Other SW 26 20 (77%) 6 (23%) 0 (0%)
Educational provisions
EETC 71 65 (92%) 6 (8%) 0 (0%)
Normal Nurseries 4 3 (75%) 1 (15%) 0 (0%)
ICCC 42 31 (75%) 10 (24%) 1 (2%)
SCCC 30 25 (83%) 5 (17%) 0 (0%)
Normal Primary Schools 0 N/A N/A N/A          
Special Primary Schools 58 40 (69%) 15 (26%) 3 (5%)
Normal Secondary Schools 1 1 (100%) 0 (0%) 0 (0%)
Special Secondary Schools 14 10 (71%) 3 (21%) 1 (7%)
Surveillance and assessment centres
FHS 46 25 (54%) 19 (41%) 2 (4%)
SHP 46 20 (43%) 24 (52%) 2 (4%)
SDHP 55 31 (57%) 21 (38%) 3 (6%)
CAS 57 34 (59%) 20 (35%) 3 (5%)
SED 49 28 (57%) 19 (39%) 2 (4%)

N: number of respondents who answered this question; N/A: not applicable
PT: physiotherapy; OT: occupational therapy; ST: speech therapy; MSW: medical social work; Other SW: other social work; EETC: early educational training centers; ICCC: integrated child care centers; SCCC: special child care centers; FHS: family health service; SHP: student health programme; SDHP: student dental health programme; CAS: child assessment service; SED: special educational department

 

Table 4 Referral time and follow up interval for various service provisions
  Referral time (wks) Follow up interval (wks)
N Median Minimum Maximum N Median Minimum Maximum
Paediatricians and family physicians
General Paediatric Clinics 3 4.0 3 8 26 26.0 1 52
Subspecialty Paediatric Clinics 15 6.0 1 52 21 24.0 2 52
Down Syndrome Clinics 7 8.0 4 48 20 26.0 10 52
Grantham Hospital 6 8.0 3 24 10 50.0 4 104
Family Physicians 1 N/A N/A N/A 11 10.0 3 26
Other specialists
Ophthalmologic Clinics 14 12.0 2 52 50 26.0 8 52
ENT Clinics 12 10.0 2 48 40 24.0 4 104
Dental Clinics 4 13.0 4 48 26 52.0 4 52
Genetic Clinics 1 N/A N/A N/A 2 65.0 26 104
Other Clinics 5 15.4 1 52 17 27.2 4 52
Allied health professionals
PT 13 16.0 2 52 34 1.0 1 4
OT 12 12.0 4 32 29 2.0 1 52
ST 13 8.0 1 48 28 1.0 1 52
MSW 8 2.5 1 24 10 48.0 1 52
Other SW 2 53.5 1 106 3 5.0 1 52
Surveillance and assessment centres
FHS 8 4.5 1 24 9 8.0 1 52
SHP 4 32.0 4 52 10 52.0 24 52
SDHP 5 48.0 4 52 16 52.0 48 52
CAS 8 12.0 4 24 9 48.0 16 156
SED 7 12.0 4 104 5 48.0 7 156

N: number of respondents who answered this question ; N/A: not applicable
PT: physiotherapy; OT: occupational therapy; ST: speech therapy; MSW: medical social work; Other SW: other social work; EETC: early educational training centers; ICCC: integrated child care centers; SCCC: special child care centers; FHS: family health service; SHP: student health programme; SDHP: student dental health programme; CAS: child assessment service; SED: special educational department

Discussion

Needs-based analysis and demand-based analysis are methods that can be used to evaluate service provision.3 Needs-based analysis refers to the estimation of requirement on the basis of population morbidity. We attempted to achieve this type of analysis by evaluating the current service utilisation pattern of children with Down Syndrome in Hong Kong and compared it to the estimated requirement according to literature. Demand-based analysis refers to the measured productivity against demand for service. We attempted to assess how effectively the needs of these children are being met in our locality by analysing the referral time, follow up frequency, perceived need and difficulties of accessing to service, and end-user satisfaction.

Our survey showed that 83% of the children had ever attended paediatric clinics and 89% of these were still current clinic attendees. Previous literature revealed that around 30-50% of children with Down Syndrome had congenital heart diseases, 15-58% thyroid problems, 10% gastrointestinal problems, 60-75% visual problems and 45-90% hearing problems.1,2,4-9 Sleep apnoea syndrome, dental problems, musculoskeletal and haematological abnormalities also occurred more commonly in children with Down Syndrome.2 Thus children with Down Syndrome may have a variety of medical problems. Health supervision and service coordination by paediatricians would be pivotal.1 On the whole the rate of attendance at the various paediatric clinics depicted in our survey was in accordance with the prevalence of medical problems extrapolated from the literature.

Up to half of the children might have congenital heart diseases,2 but 19% of our children had ever attended the Grantham Hospital and 15% were being followed up currently. This might be related to the local practice that only potential surgical candidates were referred to the Grantham Hospital (the major cardiac surgery center in Hong Kong), while paediatricians followed up the rest of the children with congenital heart diseases.

The percentages of utilisation of two areas of medical service provisions were lower than expected. In our survey, only 39% of the children had ever attended the Dental Clinics. Although some children might have joined the School Dental Health Program, some of the children might not be able to cooperate for dental examination and hospital admissions might be required. Moreover, the high incidence of cardiac abnormalities in these children made dental care a necessity rather than a luxury. The percentage of attendance at Dental Clinics found in the study was unexpectedly low. Secondly, Down Syndrome is a well-recognised genetic disorder, but a low percentage (23%) of the children had ever received advice from the Genetic Clinic. Increased referral to the Dental Clinics and Genetic Clinics should be considered.

Besides medical surveillance, these children may require attention from other health care workers. Early intervention is beneficial for the development of these children and timely assessment enables suitable educational placement.1,2 However, only 53-59% of the children had ever used the service provided by physiotherapists, occupational therapists and speech therapists. These percentages were surprisingly low. All children with Down Syndrome had developmental problems and referral to these allied health workers should be increased.

The arrival of a child with Down Syndrome would have significant impacts on the family. Social workers have an important role in counselling and coordination of services for the family. However less than half of the children had ever received service from the medical social workers or other social workers. Increased attention to the psychosocial concerns of these families should be considered.

Our study showed that most children with Down Syndrome required some sort of special education provisions. Less than 5% of them had ever attended or was currently attending the normal nurseries or schools. Integration into normal nurseries was more successful in the pre-school years. This might be due to the increase in academic discrepancies with other children as children with Down Syndrome matured. Although 59-68% of

the children had ever received assessment at Child Assessment Centres and Special Education Department, 8-11% were current users of the services. Children with Down Syndrome develop strengths and problems as they mature, they should have regular reassessment of their abilities and update of their educational plans. Parents also perceived education and assessment among the top three services most in need.

Overall, most of our users were satisfied with the current medical, allied health, educational, surveillance and assessment service provisions. There were individual variations in the satisfaction ratings among different services. Most notably, the Down Syndrome Clinics, Grantham Hospital and the educational provisions had high percentages of users expressing satisfaction, while a significant proportion of users of the medical social work expressed their dissatisfaction.

The median referral time and median follow up time were also highly variable among the different services. It might be related to the nature of service provisions. As an example, Student Health Programme and Student Dental Health Programme were usually run on a yearly basis in parallel with the school year. If the child joined the program after the specific time when the program was carried out, then the child would be assessed at the next school year and the referral and follow up interval would be long. However, our survey also identified considerable concern in the referral time in some services. The median referral times for Physiotherapy, Occupational Therapy and Speech Therapy of two to four months were much longer than expected. Since it has been shown that early habilitation would maximise the developmental potential of young infants with Down Syndrome, it would be advisable for these children to receive training as early as possible.1,2 One of the reasons for the long waiting time might be related to the labour intensive nature and thus the stress on manpower in these services. Our results showed that the median follow up frequencies for the Physiotherapy, Occupational Therapy and Speech Therapy were around every one to two weeks. This might be related to the need of adjusting the training objectives frequently in a developing child. With 46-72% of the families perceiving great necessity and 16-32% perceiving marked difficulty of access, an expansion of these services is of utmost urgency.

Education and assessment services were regarded as highly necessary but not difficult to access. On the other hand, 46-72% of users perceived physiotherapy, occupational therapy and speech therapy as necessary but 16-32% perceived difficulty in access. These results echoed the recommendation from the literature on early referral of children with Down Syndrome to the allied health professionals for training, and timely referral to the assessment services for proper educational placement.1

One limitation of our study was the sampling method of the subjects. Though Hong Kong Down Syndrome Association is the single non-government organisation serving these families in Hong Kong, non-members of the Association were not included in the study. Children who lived in institutions did not attend the meeting and were also excluded. Thus caution should be exercised in generalising the results of our study to these two categories of children. Another limitation was the small sample size. Although the overall response rate of 79% may be considered excellent for questionnaire surveys,10 the respondent rate was low in some areas of the questionnaire. This resulted in some missing items and the need to aggregate some categories. However this pilot study is still important in reflecting a territory-wide community based evaluation of the service provision for children with Down Syndrome. A larger and more detailed study with more comprehensive coverage would be needed.

Questionnaire was chosen as our method of survey. As everyone was exposed to the same written questions in the same way, rater reliability by interviewers was reduced.10 However there was the potential of misunderstanding or misinterpreting questions. For instance, physiotherapy may be available in a variety of settings including Hospital Authority Physiotherapy Clinics, EETC, SCCC, special schools or private sectors. On the other hand, not all children attending these facilities would automatically have the full range of physiotherapy, occupational therapy or speech therapy services. Therefore the layout of our questionnaire was designed to separate the allied health services into another section and avoid misleading the parents into any particular setting. Questionnaires have been found to be particularly useful as a research method for examining attitude, values and perceptions.10 Therefore this method is particularly suitable to evaluate the satisfaction and perception of services from the parents' viewpoint. However, recall bias is a known phenomenon for questionnaire survey10 and this might have affected the results on the referral time and follow up interval in our survey. It would be interesting to perform a larger study to collect objective data of the two indicators from the Hospital Authority, Department of Health, Education and Manpower Bureau, and Social Welfare Department and compare these with the parents' recalled data. Although the questionnaire in this pilot was a new measuring tool, the content validity was supported by the panel of paediatricians and epidemiologist who reviewed the questionnaire and were satisfied that the content domain had been sampled adequately.

There may be a number of confounding factors leading to a low percentage of utilisation of some services. Reasons may include lack of referral by doctors, physical difficulty in accessing the service, poor staff attitude, ineffective service, difference in local prevalence of problems, etc. We had not explored the reason for the current utilisation pattern in our study. Further study to identify the underlying reason would be useful. Before such study is available, paediatricians should be alerted to the fact that children with Down Syndrome may be in need of a variety of service and these children should not be deprived of the access to appropriate care.

Lastly, our study did not explore the factors contributing to the satisfaction of end-users. The emphasis of shortening referral time by the Hospital Authority in recent years might be based on the intuitive belief that satisfaction of end-users was related to the referral time. Studies to identify factors important to our end-users should be performed. This might include correlating the satisfaction rating of end-users, the referral time and follow up frequency, the subjective perception of service necessity and accessibility. A similar study of necessity and accessibility of services perceived by professionals from different disciplines should also be performed. Should the ranking by the professionals be discordant to that of our end-users, it would be necessary to determine if adjustment of professional presumption or parental expectation would be needed.

Acknowledgement

We would like to acknowledge the Hong Kong Down Syndrome Association for the support and assistance in this project.


References

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5. Karlsson B, Gustafsson J, Hedov G, Ivarsson SA, Anneren G. Thyroid dysfunction in Down's syndrome: relation to age and thyroid autoimmunity. Arch Dis Child 1998;79:242-5.

6. Noble SE, Leyland K, Findlay CA, et al. School based screening for hypothyroidism in Down's syndrome by dried blood spot TSH measurement. Arch Dis Child 2000;82:27-31.

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