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Abstract
Background Regular blood tests for monitoring metabolic side effects are often unable to be collected for people with an intellectual/developmental disability (ID/DD) and challenging behaviours (CBs) using usual pathways. We aimed to develop a model of care to facilitate venipuncture for children and young adults with ID/DD and CBs.
Methods A systematic tiered model of care was developed for venipuncture to suit the individual needs of children and young adults with ID/DD and CBs. A partnership was formed by the disability health team with a community pathology service provider. An observational retrospective study of the baseline demographic data, severity of disability and diagnosis, oral sedation requirement, and outcome data on the success/failure of venipuncture was done.
Results 14 children (mean (SD), 12.8 (3.1) years) had 17 attempted venipuncture with ‘reasonable adjustments’ such as preparation with social stories, distraction, low sensory strategies and oral sedation at school clinics. 14 (82%) attempts were successful. After the success of the pilot programme at school, venipuncture was replicated in settings such as home, day programmes, pathology centres and a respite facility. 16 people with ID/DD and CBs (mean (SD)17.3 (3.7) years), had 14 successful venipuncture performed out of 18 attempts (success rate, 77.7%). Overall, 11 attempts (31.4%) succeeded without requiring oral sedation using only reasonable adjustments. 16 attempts (45.7%) succeeded with conscious oral sedation along with reasonable adjustments. Of those 16, 10 required olanzapine (5 mg), 1 required olanzapine (10 mg), 1 required combination of risperidone (1 mg) and diazepam (5 mg), 1 required clonazepam (2.5 mg) and olanzapine (5 mg), 1 required combination of olanzapine (10 mg) and diazepam (10 mg), 1 required combination of olanzapine (10 mg) and diazepam (5 mg) while 1 required only diazepam (5 mg). One had to be switched to the tier-3 pathway.
Conclusion A model of care was developed to ensure compassionate and non-stressful venipuncture for children and young adults with disabilities. We demonstrated that a significant proportion of carefully selected children and young adults with ID/DD and CBs, considered ‘challenging for blood collection’ can have venipuncture performed successfully in non-hospital settings using ‘reasonable adjustments’ and oral sedation.
- Child Health
- Health services research
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Children and young people with intellectual and developmental disabilities (ID/DD) often have challenges in accessing venipuncture.
Specialised hospital-based clinics or clustering procedures in one general anaesthesia are often considered supported pathways for venipuncture.
WHAT THIS STUDY ADDS
An innovative tiered approach with conscious oral sedation and non-pharmacological strategies was successful in achieving venipuncture in children and young adults with ID/DD in non-hospital settings.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
The study has the potential to improve equitable access to venipuncture for children and young adults with ID/DD. Access to pathways for venipuncture for children with ID/DDs in non-hospital settings can possibly improve their health outcomes, improve patient satisfaction and save costs to the health system.
Introduction
Blood sampling collection (venipuncture) from children is a difficult and complex procedure, meaning that the procedure requires staff to receive special training and pay extra attention to achieve good patient care and quality blood sampling.1 This process is further complicated in children with intellectual/developmental disabilities (ID/DDs) and challenging behaviours (CBs), where there are compounding issues to consider, such as family stress and attachment issues with the child.2
This puts children with ID/DD at a disadvantage in having routine and mandatory blood tests for follow-up on their physical health.3
Children with ID/DD are often required to undergo venipuncture for screenings such as lead testing, genetic tests like Comparative Genomic Hybridisation (CGH) array and Fragile X, metabolic profile tests and therapeutic drug monitoring for epilepsy or psychotropic medications. It is hoped that venipuncture can be performed for most people with ID/DD without resorting to physical or chemical restraint.3–6 Despite this, most children starting antipsychotic therapy do not receive the recommended metabolic laboratory monitoring. For example, in a Canadian population of children and youth newly dispensed an antipsychotic, the prevalence of 3-month and 6-month follow-up blood tests was only 13.0% and 11.4%, respectively.6
To address this gap for children with ID/DD, who are often considered too challenging to undergo venipuncture in the community, procedural sedation in specialised outpatient clinics at hospitals has been considered a successful alternative. In a recent prospective hospital-based study from South Australia, involving 182 visits with a total of 110 children, two-thirds of whom had neurodevelopmental disorders, 92% were successful in obtaining venipuncture using procedural sedation.7
These hospital-based clinics are, however, often centralised and limited to a few tertiary-level hospitals. These are also labour and cost-intensive, and therefore, cannot serve the needs of all the children with ID/DD at a population level. Alternative pathways must, therefore, be explored for performing safe and effective venipuncture for children with an ID/DD in the community.
Reasonable adjustments are often necessary for successful venipuncture in children with ID/DD. Organisations such as the Agency for Clinical Innovation (ACI) have developed visual resources, such as the ‘Say Less Show More’ booklets, to prepare children, young people and adults with disabilities for easier access to procedures and health services.8 9
In this report, we describe the development of a community-based model of care for venipuncture in children and young adults with an ID. We then present the findings from our experience in facilitating venipuncture through the tier-2 pathway of the proposed model in non-hospital settings.
Methods
Setting
The authors work in one of the six specialised teams in New South Wales (NSW) focused on improving the care for people with an ID/DD in the South-Western metropolitan Sydney district. These teams are funded by the NSW Ministry of Health to enhance the capacity of mainstream service providers to improve the quality of care for people with ID/DD.10 Additionally, these teams facilitate access to services and support interagency collaboration to enhance health outcomes for people with ID/DD.11
This region of Sydney has a large population of culturally and linguistically diverse communities with a high prevalence of social disadvantage and DD. A large proportion of families speak a language other than English, and a greater proportion of individuals are born overseas compared with the rest of the NSW.12
The day-to-day clinical work in the team highlighted the difficulties of organising venipuncture for children and young adults, particularly those with CBs. Many of these individuals were on antipsychotic medications, and either fell into an unhealthy weight range or had restrictive feeding issues that necessitated blood tests to monitor their physical health. These children often did not require other medical procedures or dental exams, which might have made them unsuitable candidates for clustered care under general anaesthesia. Conducting stand-alone venipuncture for these children in hospital settings was often considered unnecessary and logistically challenging.
Therefore, our aim in this report was to develop a model of care to facilitate venipuncture for children and young adults with IDs and CBs. We also share our experience of using innovative pathways to ensure compassionate and non-stressful venipuncture for children with disabilities in non-hospital community settings.
Participants and study concept
The pilot idea for the project to perform venipuncture at the school clinic originated from a parent of one of the young persons whose data are shared in this report. They suggested that venipuncture could be more effective for children with ID/DD in environments where they are most comfortable, such as schools, homes or other non-hospital settings. Subsequently, we established a partnership with a private pathology service provider in our region to deliver pathology services in non-hospital settings.
Development of a model of care for venipuncture for children with disabilities
The team developed a five-tiered approach so that the needs of each child/young adult could be individualised in partnership with their families, disability providers and support workers (see figure 1). Tier-2 pathways were created for children and young adults, who had moderate-to-severe ID/DD and significant CBs but did not require any other procedures besides venipuncture to monitor their physical health. These individuals were generally considered ‘too challenging’ for the tier-1 process by service providers and families. Tier-1 is the standard process for organising venipuncture in most scenarios, applicable to both children with and without disabilities.
A tiered pathway for accessing blood collection for children and adults with ID/DD. ID/DD, intellectual/developmental disability.
On the other hand, tier-2 involved organising venipuncture in a setting where the individual was most comfortable, with reasonable adjustments and/or oral conscious sedation. A process was established to identify clients suitable for different tier pathways (see figure 2). Once a client was identified as suitable for a tier-2 pathway, education included social stories, preparation using health intervention videos, practice with tourniquets for familiarisation, distraction techniques, sensory management strategies and a plan for oral sedation. The team’s key role was to coordinate and facilitate the process while maintaining the autonomy of the pathology collection team and parents.
Process of identifying the needs of children for blood collection under different tiered pathways.
Tier-3 involved organising venipuncture under intramuscular/intravenous sedation or nitrous oxide for children with extremely CBs who could not undergo standalone venipuncture using tier-2 pathways. Tiers 4 and 5 required aligning and scheduling venipuncture either with upcoming appointments for already planned procedures (tier-4) or requesting multiple procedures and venipuncture in a clustered care pathway at a tertiary-level hospital (tier-5).
Study design and data collection procedures
An observational retrospective review was conducted on consecutive case records of children where venipuncture was clinically indicated and facilitated by the disability health team. Each caregiver of the patient reported in this study consented for the venipuncture to be performed in the most comfortable setting for the child or young adult.
Data were collected in a structured Microsoft Excel sheet from the case files for the year 2018 (first pilot) and subsequently between 2020 and 2023 for consecutive patients. The collected data included the level of disability, whether the child or young adult had a comorbid diagnosis of autism spectrum disorder, baseline demographics (age and gender), type and dose of oral sedation required, and the outcome of the venipuncture (success vs failure). All the collected data were deidentified to maintain patient confidentiality.
The research outcome was deemed successful if the venipuncture was obtained with minimal physical and chemical restraint.
Results
Table 1 documents the baseline demographic profile, neurodevelopmental diagnoses, the need, dosage, and type of oral sedation, and the outcomes of the cohort. All the children and young adults had moderate-to-severe ID/DD and CBs, with the majority being male. Except for two individuals, all had a comorbid diagnosis of severe autism spectrum disorder. Sensory aversions were prevalent among all children, leading to difficulties coping in unfamiliar environments, often manifesting as CBs. Figure 1 illustrates the tiered model of care developed for venipuncture in children and young adults with moderate-to-severe disabilities.
Characteristics of children and young adults with ID/DD
The outcomes of the cohort using the tier-2 pathways, along with details on the need, dosage and type of oral sedation, are enumerated in table 1. In 2018, 14 children (mean age 12.8 years, range 7–17 years), previously deemed ‘too challenging’ for venipuncture in ambulatory settings, underwent 17 blood collection attempts during school clinics, with 14 attempts (82%) proving successful. Following this successful pilot in school settings, venipuncture was attempted 18 times for 16 individuals with ID/DD and CBs (mean age 17.3 years, range 11–25 years) between 2020 and 2023. Of these attempts, 14 (77.7%) were successful. Venipuncture was conducted at home for nine individuals, three at day programmes, one at a pathology centre and one at a respite centre (table 1).
All children and young adults required reasonable adjustments, including education through social stories, video preparation, use of tourniquets for familiarisation, distraction techniques and sensory management strategies. 11 attempts (31.4%) succeeded without requiring oral sedation, using only these reasonable adjustments. 16 attempts (45.7%) succeeded with a combination of conscious oral sedation and reasonable adjustments (table 1).
Among these, 10 individuals required olanzapine (5 mg), 1 required olanzapine (10 mg), 1 required a combination of risperidone (1 mg) and diazepam (5 mg), 1 required a combination of clonazepam (2.5 mg) and olanzapine (5 mg), 1 required a combination of olanzapine (10 mg) and diazepam (10 mg), and 1 required a combination of olanzapine (10 mg) and diazepam (5 mg). One child (2.9%) required switching to the tier-3 pathway, necessitating nitrous oxide and midazolam in a hospital setting. Three attempts (8.6%) failed despite oral sedation: one with Phenergan only, one with olanzapine (5 mg) only and one with a combination of diazepam (5 mg) and olanzapine (5 mg). Two attempts (5.7%) failed without any oral sedation, and data on oral sedation were unavailable for one attempt (2.9%). One child (2.8%) did not cooperate with venipuncture and refused oral sedation altogether.
During the initial phase, the disability health team physically attended all children at school clinics. However, in the subsequent phase (2020–2023), physical presence from the disability health team was required in only four cases.
Discussion
In this report, we developed a tiered model of care for venipuncture in children and young adults with ID/DD and CBs. This model is based on relevant published reports that have studied various approaches: tier-1 involves standard methods for venipuncture; tier-3 includes procedural sedation in outpatient clinics and tier-4 encompasses opportunistic approaches during dental exams under nitrous oxide sedation or general anaesthesia, or clustered care admission in hospitals for multiple procedures under general anaesthesia.1 5 7 13–16 However, a gap was identified from the feedback provided by the parents of children with ID/DD and CBs, suggesting that successful venipuncture could be achieved in familiar environments such as schools, homes or respite facilities with reasonable adjustments and oral sedation. This insight led to the development of tier-2 in the care model for venipuncture, providing a compassionate healthcare intervention option for children and young adults with disabilities.
We provide evidence in this report that almost one-third of attempts of venipuncture for children and young adults with a moderate-to-severe ID/DD who are considered ‘too challenging’ because of their sensory aversions and CBs, and almost half of the attempts could have successful venipuncture in non-hospital settings with the use of appropriate reasonable adjustments either alone or in a combination with the oral sedation, respectively. We could not find any published reports of performing venipuncture in non-hospital settings for people with an ID.
In a report from England, although the effectiveness of performing venipuncture after adequate preparation and desensitisation programmes (non-pharmacological approaches) in 18 adults with learning disabilities has been demonstrated, the venipuncture was conducted in hospital settings, which present logistical challenges for individuals with high sensory needs and CBs.5
In the current study, a process and tiered approach was developed, to facilitate venipuncture in familiar environments where children were most comfortable. Even among the subgroup of children requiring oral sedation, successful venipuncture was achieved in over three-quarters of attempts in these familiar settings, without the need to bring clients to a hospital. Our success rate in performing venipuncture is comparable to the 82% success rate demonstrated in a study of 155 children (4–10 years) with anxiety and fear undergoing their first phlebotomy, who did not have a disability.14
We used the best practice resources for ‘reasonable adjustments’ from the NSW ACI, which are most suitable for facilitating venipuncture for people with an ID/DD.8 9 The effectiveness of a systematic non-pharmacological Blood Draw Intervention programme in a cohort of children with autism spectrum disorder has also been demonstrated in a study from North America. In that study, using a five-pronged approach—providing instructions to the parent and child, an individualised social story, a picture schedule and a practice packet of venipuncture materials—compliance with genotype testing increased from 85.4% to 96.6%.13 However, most children in that study did not have severe ID/DD or CBs, as reported mean IQ scores ranged from 80 to 83. In contrast, our study included children with severe ID/DDs and autism spectrum disorder, necessitating oral sedation and behavioural interventions in more than half of the children and young adults.
In our study, benzodiazepines (diazepam) and olanzapine were administered as the most common medications for oral sedation, noted to be quite effective either alone or in combination with each other. In a recent systematic review of options for conscious sedation during dental procedures for individuals with IDs, benzodiazepines such as diazepam and midazolam, along with inhaled nitrous oxide, were reported as the most commonly used oral conscious sedation medications.15 In another study, intranasal midazolam administered by a nurse in an outpatient clinic setting was found to be effective for children and young adults with ID/DD and needle phobia.17 We could not definitively ascertain the presence of needle phobia within our cohort, potentially due to the severity of ID/DD. Negative experiences during past healthcare interactions may have resulted in trauma that these individuals cannot articulate clearly due to communication impairments. This may explain the challenges in engaging them for procedures, compounded by sensory sensitivities and aversion to physical contact, which can trigger externalising behaviours such as aggression. That challenge was overcome in most instances using a process of distraction and behavioural strategies. Olanzapine was chosen as the most common medication in our study to prevent the escalation of acute agitation related to venepuncture.18 This was anticipated in our study as children with ID/DD are reported to experience more pain and anxiety when compared with children without an ID.19
In conclusion, the current study demonstrates the development of a tiered pathway and model of care to offer more equitable options for venipuncture to children and young adults with severe ID/DD and CBs in community and non-hospital settings. The process for selecting children with moderate to severe disabilities, requiring standalone venipuncture without additional procedures, proved successful for a significant proportion of participants, using evidence-based oral sedation medications and reasonable adjustments safely and effectively. These community-based pathways have the potential for cost savings, improved patient outcomes and increased parental satisfaction. Future research should further explore these factors to enhance venipuncture coverage for children and young adults with ID/DD, potentially narrowing the clinical practice gap between those with and without ID/DD.
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information.
Ethics statements
Patient consent for publication
Ethics approval
The quality improvement (QI) committee of the SWSLHD granted ethics approval by the principles of best research practices (QI number PCH01/2023/20).
Acknowledgments
The authors acknowledge the help of Gail Tomsic, Clinical Nurse Consultant in the pilot phase of blood collection at school clinics.
Footnotes
Contributors PG conceptualised the study and wrote the first draft. NR collected data and reviewed the paper. CO'H and TL helped to deliver venipuncture in non-hospital settings and helped in the development of a tiered approach. LP helped in the development of a tiered approach; BF reviewed the paper. All authors contributed to the intellectual content of the paper. PG is the overall guarantor of the paper.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; internally peer reviewed.