Health needs and health service utilisation of children and adolescents with intellectual disability attending schools for specific purposes in Sydney, Australia

Abstract

Background

Little is known about the health needs and service utilisation of children and adolescents with moderate and severe intellectual disability in Australia.

Aim

To describe the health needs and health service utilisation of children and adolescents with intellectual disability attending Schools for Specific Purposes in Sydney, Australia.

Methods

We performed a retrospective review of 116 students attending three clinics within Schools for Specific Purposes in NSW. Extracted data explored health and social needs, and patterns of health service utilisation.

Results

Students’ mean age was 12.6 years (SD = 3.6) and 76% were male (n = 88), with 28% from families with a primary language other than English (n = 33). At least one housing concern was identified in 19% (n = 22), and there was history of child protection concerns in 19% (n = 22). At least one behavioural challenge was identified in 92% (n = 107), and 34% (n = 40) were prescribed anti-psychotic medication. Among those with non-syndromic moderate to severe intellectual disability (n = 97), more than 3 comorbid medical diagnoses were identified in 26% (n = 25).

Conclusions

Our study demonstrates high health and social needs among Australian children and adolescents with intellectual disability.

Keywords:

• Health needs
• paediatrics
• intellectual disability
• health services

REVIEWING EDITOR:

• Yang Gao, Hong Kong Baptist University, Hong Kong

SUBJECTS:

• health conditions
• public health policy and practice
• medicine

Introduction

Australian and International studies have demonstrated adults with intellectual disabilities have a reduced life expectancy of up to 20 years younger than the general population, with respiratory and circulatory diseases the main causes or mortality (O’Leary et al., 2018; Trollor et al., 2017). Co-morbid physical health conditions occur more frequently, and at an earlier age, than in the general population (Cooper et al., 2015; Young-Southward et al., 2017). This disparity in health outcomes begins in childhood. Children and adolescents with intellectual disability experience higher rates of poor physical and mental health than their non-disabled peers (Einfeld et al., 2011; Schieve et al., 2012; Wallén et al., 2009). Risk factors for chronic disease including obesity, cardio-metabolic risk factors and sleep disorders are present at higher rates (Krause et al., 2016; Wallén et al., 2009), as are mental health disorders and behavioural challenges (Einfeld et al., 2011).

Despite high levels of physical and mental health-related morbidity, indicators of unmet need in relation to health care utilisation are higher among children and adolescents with intellectual disability compared to the general population (Schieve et al., 2012). This represents an opportunity for intervention amongst children and adolescents with intellectual disability. Targeting risk factors present in childhood can improve the health and wellbeing of the child and family and reduce burden of disease in adulthood (Juonala et al., 2011).

In Australia, 2.1% of children and adolescents aged 0–14 years have an intellectual disability causing severe or profound core activity limitation (Australian Institute of Health and Welfare, 2004). Of these, there are 28,900 children and adolescents attending special schools (Australian Bureau of Statistics, 2012). In NSW, Schools for Specific Purposes (SSPs) provide specialist and intensive support for students with moderate to high learning needs within the public education system.

Currently, little is known about the health needs and health service utilisation of children and adolescents with moderate and severe intellectual disability in Australia. In this study, we aim to describe the health needs and health service utilisation of children and adolescents with moderate to severe disability attending three different School Clinics, provided by two paediatric developmental disability services in metropolitan Sydney, New South Wales, Australia. As a secondary aim, we sought to assess whether patterns of service utilisation differ between the two paediatric developmental disability services, due to their operation within differing service structures.

In both services in our study, school clinics provide a consultative forum for addressing health and behavioural concerns that may be impacting on learning in the school environment, in a multidisciplinary environment that seeks to enhance the consistent implementation of recommendations across the home and school context in a child’s life (Leitner et al., 2015). In all cases, the clinics involved meetings between parents and carers and school principals, classroom teachers, school counsellors, a consultant developmental paediatrician and a trainee paediatrician. In both services, parents were also welcomed to invite key support workers to the clinics, and referrals were initiated either by the school (with parental consent) or by parent request (with facilitation from the school).

The cohort described in this study were drawn from outreach school-based clinics that are closely situated in geographical terms within south-eastern metropolitan Sydney. However, the clinics were situated across differing health districts with some notable differences in organisational structures. One clinic (Clinic A) was run by a paediatric hospital within a paediatric Speciality Health Network. In this network, children requiring ongoing follow up with a developmental paediatrician or other sub-specialist attend an outpatient service located within a tertiary paediatric hospital for children and adolescents aged 0–18 years. The second and third clinics (Clinics B and C) were run by a Local Health District, within a developmental intellectual disability service providing care across the lifespan. In this district, the disability service had a dedicated clinical space reserved for its sole use, and regular paediatric and adult sub-speciality clinics (including sleep medicine, gastroenterology, genetics, and neurology clinics) catering specifically to individuals with neurodevelopmental disability.

Methods

This study was approved by the Sydney Children’s Hospitals Network Human Research Ethics Committee and Research Governance Office (LNR/16/SCHN/145 and LNRSSA/16/SCHN/146), with additional site-specific approval from the South Eastern Sydney Local Health District Research Governance Office (SSA 18/G/320).

Setting and study design

A retrospective review was conducted of clinical records of all children and adolescents attending School Clinic A between 2013 and 2017 (Clinic A), and School Clinics B and C at two schools in between 2017 and 2018 (Clinics B and C). This cohort included 116 children and adolescents aged between 4.5 years and 18 years.

Data collection and extraction

Data were extracted from clinical reports generated following attendance of each child at the School Clinic. The report is a summary of the case conference which frequently includes a summary of medical issues, sleep, diet, behaviour and mental wellbeing, current access to medical care, and discussion of current health needs and service needs of the child. In the report, a list of recommendations is made for each child and their family.

Data were also collected from the child’s electronic medical record. This included documentation from outpatient specialist clinics, inpatient admissions, developmental assessments and emergency departments. This approach would capture the majority of service utilisation within the public health system of children and adolescents in our cohort, but may exclude GP and private service utilisation.

To facilitate chart review we developed a chart abstraction form consisting of 15 items (see Supplementary Material). Substantive areas of the form included demographic characteristics, primary diagnosis, medical comorbidity, behavioural difficulties, regular medications and monitoring of side effects, health surveillance (including growth monitoring, immunisation, audiology and vision testing), health service utilisation (emergency department presentations, hospital admissions, and public outpatient visits) and recommendations made at the School Clinic.

Statistical analysis

Descriptive statistics were performed using IBM SPSS Statistics, version 28 (IBM Corp., Armonk, NY, USA). Comparative tests were used to determine that demographics were similar across Clinic A and Clinics B and C, and to compare patterns of service utilisation, due to their operation within differing service structures. The chi-square test of homogeneity was used to test for univariate differences in proportion for descriptive data and for patterns of referral, between Clinic A and Clinics B and C. Sample size was assessed in each case to ensure an expected frequency of greater than or equal to 5 in all cells of the 2x2 table. Where this requirement was not met, Fisher’s exact test was used. The independent-samples t-test was used to compare the mean age of participants between clinics.

Results

Diagnosis

A total of 116 children and adolescents were included, with 57 children and adolescents attending Clinic A, and 59 attending Clinics B and C. All students attending both Clinics had moderate to severe intellectual disability. Seventy-seven per cent (n = 44) of students attending Clinic A and 92% (n = 54) attending Clinics B and C had a diagnosis of Autism Spectrum Disorder. Twenty-six percent (n = 15) attending Clinic A and 7% (n = 4) attending Clinics B and C had a syndromic diagnosis.

Demographics

Overall, students attending School Clinics in this study had a mean age of 12.6 years (standard deviation (SD) = 3.6) and 76% were male (n = 88) (Table 1). Twenty-eight per cent of students (n = 33) lived in families with a language other than English spoken at home.

Table 1. Demographic and social factors.

	Totaln = 116	Clinic An = 57	Clinics B and C n = 59	Mean or proportional difference (p)
	n (%)	n (%)	n (%)
Age (years), mean ± SD	12.6 ± 3.6	12.14 ± 3.4	13.11 ± 3.8	0.97 ± 0.4, p = 0.15^a
Gender				0.04, p = 0.6^b
Male	88 (76)	42 (74)	46 (78)
Female	28 (24)	15 (26)	13 (22)
Language other than English spoken at home	33 (28)	12 (21)	21 (36)	0.15, p = 0.08^b
Housing concern	22 (19)	11 (19)	12 (20)	0.01, p = 0.9^b
Previous or current child protection concern	22 (19)	8 (14)	14 (24)	0.1, p = 0.06^b
Parental unemployment	12 (10)	8 (14)	4 (7)	0.07, p = 0.2^c

^aIndependent-samples t-test. ^bPearson Chi Square. ^cFisher’s exact test.

Social risk factors

Of the students attending School Clinics, 19% (n = 22) were identified to have at least one housing concern (Table 1). Twelve per cent of students (n = 14) lived in families who did not have stable accommodation and 12% lived in houses that could not be secured to prevent absconding (n = 14). Nineteen per cent of students (n = 22) were identified to have had reports regarding their welfare made to child protection services.

Physical health

Students with syndromic diagnoses (n = 19) were excluded from analysis of physical health needs in this study, to limit the confounding impact of specific health needs associated with identifiable syndromic diagnoses. Among those with non-syndromic moderate to severe intellectual disability (n = 97), approximately three quarters of students had at least one co-morbid physical health diagnosis (n = 73). The most common co-morbid disorders are listed in Table 2. Multiple co-morbid medical issues were common, with 26% (n = 25) having more than 3 co-occurring medical diagnoses, and 62% (n = 60) having restricted diets placing the individual at nutritional risk.

Table 2. Medical co-morbidity in students with non-syndromic intellectual disability.

	Non-syndromic ID n = 97	Clinic A n = 42	Clinics B and C n = 55	Proportional difference (p)
	n (%)	n (%)	n (%)
Sleep difficulties	40 (41)	15 (36)	25 (45)	0.09, p = 0.3^a
Constipation	31 (32)	6 (14)	25 (45)	0.31, p < 0.01^a
Obesity and overweight	22 (23)	8 (19)	14 (26)	0.07, p = 0.5^a
Allergies	21 (22)	9 (21)	12 (22)	0.01, p = 0.96^a
Epilepsy	20 (21)	8 (19)	12 (22)	0.03, p = 0.7^a
Asthma	14 (14)	10 (24)	4 (7)	0.17, p = 0.02^a
Gastro-oesophageal reflux disease	11 (11)	9 (21)	15 (27)	0.06, p = 0.5^a
Obstructive sleep apnoea	10 (10)	0	10 (18)	0.18, p = 0.004^b

^aPearson Chi Square. ^bFisher’s exact test.

Behaviour

Ninety-two per cent of students (n = 107) were identified to have at least one behaviour causing challenges overall. School staff or parents had concerns regarding aggressive behaviour for 57% of students (n = 66), and 36% of students were identified as having self-injurious behaviours (n = 42). Twenty-six percent of students (n = 30) had absconding behaviours that put them at risk.

Overall, 34% (n = 40) of students were taking an antipsychotic medication (Table 3). Of the students taking anti-psychotic medication, 38% were identified to have had weight gain during treatment (n = 15), and 15% were identified as having had extra-pyramidal side effects during treatment (n = 6). Half of the 14 students treated with antipsychotic medications at Clinic A (n = 7), and 73% of the 26 students treated with antipsychotic medications at Clinics B and C (n = 19), did not have a regular paediatrician or psychiatrist in either the private or public sector (defined as at least annual review).

Table 3. Psychotropic medication use.

	Total n = 116	Clinic A n = 57	Clinics B and C n = 59	Proportional difference (p)
	n (%)	n (%)	n (%)
Antipsychotic	40 (34)	14 (25)	26 (44)	0.19, p = 0.03^a
SSRI	20 (17)	7 (12)	13 (22)	0.1, p = 0.2^a
Stimulant	4 (3)	1 (2)	3 (5)	0.03, p = 0.6^b
Melatonin	19 (16)	8 (14)	11 (19)	0.05, p = 0.5^a
Clonidine	5 (4)	1 (2)	4 (7)	0.05, p = 0.4^b
Propranolol	9 (8)	2 (4)	7 (12)	0.08, p = 0.2^b

^aPearson Chi square. ^bFisher’s exact test.

Healthcare utilisation

Of the 57 students who attended Clinic A during the study period, 61% had existing regular paediatric follow up in place (n = 35). Five were seen in a public general paediatric outpatient clinic, 11 attended a private paediatrician, and 19 were seen in a public developmental paediatric specialist clinic at the Paediatric Hospital Speciality Network. Of the 59 students attending Clinics B and C, 39% had regular paediatric review (n = 23). Five regularly attended a public general paediatric outpatient clinic, and 18 visited private paediatricians. Students at Clinic A were more likely to have regular general or developmental paediatrician review than students at Clinics B and C (n = 35 vs. n = 23, a difference in proportions of .22, p = 0.02). However, lower proportions of students at Clinic A had attended other paediatric subspecialty clinics compared to Clinics B and C, such as gastroenterology (n = 5 vs. n = 29, a difference in proportions of .4, p < 0.00001), and sleep medicine (n = 1 vs. n = 15, a difference in proportions of .24, p < 0.001). Overall, only 13% of students had ever seen a psychiatrist (n = 15), with only 6% having received psychiatric review in the year prior (n = 7). A total of 2 students at Clinic A and 27 students at Clinics B and C had previously seen a dietician, (a difference in proportions of .42, p < 0.0001).

School clinic recommendations

The most frequent recommendation made at the school clinics was for psychological intervention. This recommendation was made for 35% of students at Clinic A (n = 20) and 48% of students at Clinics B and C (n = 28). Students at Clinic A were less likely to receive recommendations for interventions by a social worker compared to those at Clinics B and C (n = 2 vs. n = 11, a difference in proportions of .15, p = 0.01), and were less likely to be referred to a subspecialist (n = 5 vs. n = 19, a difference in proportions of .24, p = 0.002).

Recommendation for dietician review was made for 4 students attending Clinic A and for 12 attending Clinics B and C, (a difference in proportions of .13, p = 0.04).

Discussion

This study describes the health needs and service utilisation of children and adolescents with moderate to severe intellectual disability, attending a School for Specific Purpose and accessing outreach paediatric clinics within the school setting across two health services in metropolitan Sydney.

Health needs and health service utilisation

Consistent with findings of international studies, school students in our study had high rates of chronic health conditions and co-morbidity (Schieve et al., 2012; Young-Southward et al., 2017). Of those with non-syndromic moderate to severe intellectual disability (n = 97), more than 3 comorbid medical diagnoses were identified in 26% (n = 25). Even after excluding from analysis children and adolescents with syndromic diagnoses, our cohort of students with non-syndromic intellectual disability had a high prevalence of epilepsy in our study (21%, n = 20), as has previously been reported in the literature (Woolfenden et al., 2012). The prevalence of physical health challenges such as sleep disturbance, epilepsy, gastro-oesophageal reflux disease, allergy, and obesity were similar across Clinic A and Clinics B and C in our study (as shown in Table 2).

School students in our study experienced similarly high rates of overweight and obesity (23%, n = 22) as has previously been reported in students attending Schools for Special Purpose in NSW (Krause et al., 2016). Significantly higher rates of overweight and obesity have been reported in international studies of children and adolescents with intellectual disability and autism (Krause et al., 2016). However, growth parameters of children and adolescents in our study were poorly monitored and may underestimate rates of obesity and overweight. Excluding children and adolescents who regularly see a private paediatrician (n = 23), 73% of children and adolescents did not have a recorded weight measured by specialists or primary care providers in the previous year (n = 68), and 79% had no height measured in the previous year (n = 73). This issue highlights a missed opportunity for addressing a high prevalence risk factor for chronic disease in this population.

The children and adolescents with non-syndromic ID examined in our study had a high prevalence of sleep difficulties, reported by 41% of families overall (n = 40), with no significant difference in prevalence between the two school clinic services (Table 2). A difference in obstructive sleep apnoea (OSA) prevalence was noted between services, with 10 students at Clinics B and C having received this diagnosis, in comparison to nil at Clinic A (a difference in proportions of .18, p = 0.004). This disparity may reflect patterns of service utilisation influenced by local availability of specialised services. The service operating School Clinics B and C had established a sub-specialty sleep clinic catering to children and adolescents with developmental disabilities, with readily available access to diagnostic sleep studies. A higher proportion of students at Clinics B and C had been seen by a sleep physician compared to those at Clinic A (n = 1 vs. n = 15, a difference in proportions of .24, p < 0.001), and thus were more likely to have accessed specialised testing to permit diagnosis of OSA. Students attending Clinic A are referred to sub-specialist paediatricians as indicated within the paediatric hospital Speciality Health Network, where intellectual disability status may or may not influence prioritisation at intake.

Despite the similarly high rates of medical co-morbidity experienced by children and adolescents across clinics in our study, a higher proportion of students at Clinic A were regularly attending general or developmental paediatric services, (61% (n = 35) vs. 39% (n = 23), p = 0.02). The difference in attendance rates between services was largely accounted for by the 46% of children and adolescents at Clinic A who had attended the developmental paediatric outpatient clinic in the paediatric hospital Speciality Health Network at least once (n = 26). Although dedicated sub-specialty services existed for children and adolescents attending Clinics B and C (including sleep medicine, gastroenterology, genetics and neurology clinics), access to general or developmental paediatric follow up was more limited. Children and adolescents attending Clinics B and C had higher rates of attendance at dietician and paediatric sub-speciality clinics than children and adolescents at Clinic A, reflecting the availability of sub-speciality clinics and a full-time dietician employed within their disability service at the time of this study.

Our study highlighted the impact of non-systematic needs-based health service planning and service provision on health service utilisation. Using access to dietetics as an exemplar, children and adolescents with intellectual disability and ASD are well established in the literature to have restricted diets and to be at risk of micro and macro-nutrient deficiencies, which can be significant (Emond et al., 2010). In our study, the proportion of students with indications for dietetics support were similar across Clinic A and Clinics B and C, for both restricted dietary behaviours (n = 38 vs. n = 30, a difference in proportions of .16, p > 0.05) and for obese or overweight status (n = 8 vs. n = 14, a difference in proportions of .07, p > 0.05). However, only 2 students at Clinic A compared to 27 students at Clinics B and C had ever seen a dietician, (a difference in proportions of .41, p < 0.0001). This disparity in health service utilisation was likely primarily influenced by availability of local services, with greater engagement when services were designed to specifically cater to children and adolescents with developmental disability.

Our findings do not directly facilitate conclusions in relation to ideal models of health and social care for children and young people with intellectual disability. However, our findings highlight the potential for inequitable access to care based on the arbitrary availability of services, even within a relatively small geographic area in a metropolitan setting. Naturally, these inequities are likely to be even more notable in regional and rural settings. Our findings support the need for systematic and needs-based design of equitable models of care for children and young people with intellectual disability, at a state and national level.

Social needs

This need for equitable health service design is further compounded by the higher rates of social challenges observed in this population. In addition to significant health needs, previous research has found families supporting children and adolescents with intellectual disability are faced with greater socioeconomic disadvantage, including poor housing and unemployment (Emerson, 2003). Consistent with this, 10% of children and adolescents attending the School Clinics in our study lived in a household where no parent was employed (n = 12), compared to a prevalence of parental unemployment of 5% in the general population (Baxter, 2013). A high proportion of children and adolescents attending School Clinics in our study lived in out of home care (7%, n = 8), in contrast to an estimated 0.08% of children and adolescents in the general population (Australian Institute of Family Studies, 2017). A total of 19% of the children and adolescents attending School Clinics in our study had a documented child protection concern (n = 22). This is consistent with the NSW Ombudsmen’s findings that young people with disability are at greater risk of abuse and neglect than their peers (Ombudsman NSW, 2017).

Behavioural and mental health needs

Our findings also highlight significant health needs in relation to behavioural health in this population, with children and adolescents in our study having high rates of self-injurious behaviour and aggression towards others. Our findings are in keeping with previous research, demonstrating the high rate of psychiatric comorbidity in this population (Einfeld & Tonge, 1996; Molteno et al., 2001). Psychological intervention is effective in behaviour management of children and adolescents with intellectual disabilities (Scahill et al., 2012). Our study identified that then most frequent recommendation made at School Clinics was for psychology intervention, reflecting the gap in access for these children and adolescents. Our study also demonstrated sub-optimal rates of annual follow up with a paediatrician or psychiatrist for children on psychotropic medications, again reflecting healthcare access challenges that are likely to significantly impact the behavioural health and mental wellbeing of children and adolescents with ID. This access challenge also influences physical health, as current guidelines recommend regular monitoring for potential side effects of psychotropic medications including weight gain and metabolic syndrome (Pringsheim et al., 2011), both of which were reported in our sample, and can interact with poor diet and physical inactivity to increase risk of chronic disease. This highlights an important consideration in prescription of medications that have potential for harm without appropriate follow up.

Limitations

This study focused on three clinics in one jurisdiction, and our findings may or may not be more widely generalizable. Other limitations in this study relate to limited sample size and retrospectivity, particularly as complete data related to socioeconomic risk may not have been disclosed, or specifically asked about by healthcare professionals. Differences in prevalence of health conditions such as asthma and constipation may reflect differences in surveillance at the two clinics for these specific chronic conditions. Data was collected in the public health system only. Although we would expect the majority of subspecialised care for children and adolescents with moderate to severe ID to occur in this setting, we acknowledge that our review may not have captured all involvement from private specialists and General Practitioners. Future prospective research is needed to explore access to medical, mental health and allied health services for this vulnerable population group, in addition to ideal models of health and social care for children and young people with ID.

Conclusions

This study provides new insights into the healthcare needs and health service utilisation of children and adolescents with developmental disability attending Schools for Specific Purposes in NSW. Our results demonstrate high prevalence of medical co-morbidity and risk factors for chronic disease emerging in childhood, together with significant social vulnerability. This suggests the pattern of poor adult health outcomes and early morbidity is established in childhood. Children and adolescents had poor regular access to services including paediatricians, psychiatrists, psychological services and dieticians. In our study, observed differences between districts in the utilisation of sub-speciality services may suggest a positive impact of disability-specific service availability. Further research would be required to draw conclusions regarding the superiority or equivalence of specific service models, based on clinical outcomes and other metrices of consumer satisfaction, provider satisfaction, and cost-effectiveness. Improving health in this vulnerable population will require systematic and needs-based planning for the provision of equitably accessible, comprehensive and ongoing paediatric care integrated with disability, education and social supports, responsive to emerging symptoms and with a focus on health promotion.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Data and materials supporting the results or analyses presented in their paper would be made available upon reasonable request, (after obtaining ethical approval for the specific data sharing request from the Sydney Children’s Hospitals Network Human Research Ethics Committee).

Additional information

Notes on contributors

Michelle Corke

Michelle Corke, Alicia Montgomery, Robert Leitner, Robert Leitner and Vanessa Sarkozy are community-based developmental paediatricians from Sydney, Australia.

Alicia Montgomery

Michelle Corke, Alicia Montgomery, Robert Leitner, Robert Leitner and Vanessa Sarkozy are community-based developmental paediatricians from Sydney, Australia.

Robert Leitner

Michelle Corke, Alicia Montgomery, Robert Leitner, Robert Leitner and Vanessa Sarkozy are community-based developmental paediatricians from Sydney, Australia.

Vanessa Sarkozy

Michelle Corke, Alicia Montgomery, Robert Leitner, Robert Leitner and Vanessa Sarkozy are community-based developmental paediatricians from Sydney, Australia.