Spain D, Stewart G R, Mason D, Milner V, Fairhurst B, Robinson J, Gillan N, Ensum I, Stark E and Happe F. (2022). Telehealth autism diagnostic assessments with children, young people, and adults: qualitative interview study with England-wide multidisciplinary clinicians. Journal of Medical Internet Research – Mental Health. Available from: https://doi.org/10.2196/37901

Diagnostic assessment of autism

Prior to the COVID-19 pandemic, diagnostic assessment of autism typically involved a multidisciplinary team gathering information with a clinical interview, behavioural observation, and review of the person’s developmental history. It could be time and resource intensive, and relied on patients, families and clinicians being in the same location together.

It was unusual for diagnostic assessments to take place remotely, as tools used in the assessment have been validated for in-person use, and the degree to which aspects of social communication could be evaluated online was questioned.

Taken together, this meant that despite the organisational challenges of in-person assessment, remote autism assessment was relatively rare.

That is, until restrictions on in-person interaction imposed in response to the COVID-19 pandemic changed this dramatically, resulting in a huge surge in the use of telehealth (the delivery of healthcare remotely using telecommunication technology) interactions autism assessment.

The recently published study by Dr Spain and colleagues was based on work funded by the National Autism team at NHS England.

In the study, 45 multidisciplinary team clinicians with experience of conducting diagnostic assessments or providing post-diagnostic support were interviewed. Members of the autism community reviewed the study and were invited to offer their perspectives on the implications of the study findings.

The study aimed to:

• investigate clinicians’ experiences of conducting telehealth autism diagnostic assessments
• establish their views about the reliability of these assessments, and how these might be improved going forward
• understand implications for remote delivery of post-diagnostic support
• identify potential novel training needs for clinicians using telehealth.

1. Practicalities of telehealth

Using IT

An issue raised by clinicians who participated was that variable computer literacy levels among both professionals and patients and their families likely impacted the quality of both the diagnostic outcome and the experience of being assessed.

Additionally, digital poverty (access to suitable equipment, software or sufficient wi-fi speeds or mobile data packages) had the potential to contribute to inequalities in the robustness of, and access to assessments for different groups, according to respondents.

Flexibility and efficiency

Telehealth assessments were seen to provide flexibility and choice. The benefits mentioned included more accessible appointments; fewer no-shows; ability to fill last-minute cancellations; ability to record assessments; and less travel.

Logistical barriers

The four primary barriers to effective telehealth assessment were identified by clinicians as environmental factors, IT-related factors, engagement-related factors, and risk-related factors.

2. Telehealth autism diagnostic assessments

Limited standardisation

Services differed in factors such as the number of clinicians involved in the assessment, the types of behavioural observation assessments used, the total number of appointments offered and overall assessment duration. Consequently, there was potential for a lack of inter-rater reliability in diagnostic outcomes between services.

Validity and reliability

Many participating clinicians said their opinion of the validity of telehealth assessments shifted over the course of the pandemic, in that they now felt they were more valid and reliable than they had previously thought.

Some felt the reliability of assessments could be affected by the age of the patient, or if the patient has speech and language difficulties, an intellectual disability, or learning difficulties.

Assessment tools

Many services developed an Autism diagnostic observation schedule, second edition (ADOS-2)-informed assessment for use via telehealth; however, as they had not been empirically tested their psychometric properties were unknown. As a result, professionals were more cautious about interpreting their results.

Autism assessment

Conducting assessments virtually could affect judgements about why a trait or behaviour is observed (or not), for example, issues with internet connection may obscure a patient missing a social cue or may create a false impression of an idiosyncratic reaction.

Conversely, seeing the patients’ home environment could aid in noticing preferences and difficulties, and relationships between patients and their families. However, it could also allow more adept management of social interactions that may have been challenging in a clinical environment such as a GP surgery.

3. Diagnostic conclusions

Reaching a diagnostic conclusion

Telehealth assessments may introduce greater uncertainty between professionals when compared with in-person assessment. Some participants said they would not confirm a diagnosis for someone they had not met in person, whilst another service allowed for re-assessment in two years if the patient was not happy with the diagnostic conclusion.

Communicating the diagnosis

Some clinicians interviewed felt that giving a diagnosis over the internet could seem insensitive. Receiving a diagnosis may be a relief for some more so than others, whereas not receiving a diagnosis could result in frustration or sadness. A few reported receiving complaints from parents saying that a diagnosis of autism was not given as the assessment was conducted remotely.

4. Clinical considerations

Clinical complexity

Some clinicians felt that, during the pandemic, patients with straightforward presentations were being seen quickly via telehealth, whilst those with complex presentations were waiting for longer.

Risk and safeguarding

In some services, risks to self or others, recent suicidality, substance use, high mental health needs, impaired capacity and known safeguarding concerns precluded the use of telehealth for diagnostic purposes.

There was a perceived risk that issues could come up during a remote assessment and as the professional was not physically with the patient. It could therefore be harder to respond urgently to potentially risky behaviour or safeguarding concerns if they arose during a telehealth assessment.

5. Post-diagnostic support

Many services were not commissioned to provide post-diagnostic support. There was a clear need, according to participating clinicians, for better resourcing to provide input after the assessment.

For services that did provide it, the nature of post-diagnostic interventions varied. Some services hosted online groups, with mixed success.

There was a lack of post-diagnostic intervention for people who did not receive an autism diagnosis.

6. Future ways of working

Integral components of telehealth

Most services said they would continue to use telehealth assessments beyond the pandemic, with in-person appointments being offered based on factors such as organisation policy, patient choice and clinical complexity.

Most clinicians were happy to implement a hybrid model, provided the quality of assessment was not compromised as a result.

Innovations

Suggestions for innovation included allowing for videos to be shared of the patients’ behaviour in everyday scenarios; using multiple cameras to observe their behaviour from different angles (in the clinic or at home); developing eye-tracking or neuropsychological tasks; as well as more sophisticated screen-sharing options.

7. Clinicians’ experiences and needs

Experiences during the COVID-19 pandemic

The convenience, flexibility and efficiency of working from home was favoured, but this also had limitations. Many clinicians reported that they preferred being around people during work. Some described the health implications of working from home, for example, eyestrain, back problems and burn out.

Supervision and support

Several participants felt there was a lack of guidance and supervision for working this way, and some struggled to separate work and home life. Peer supervision was seen to be important, with some suggesting health professional forums.

Training

None of the participants had received training on conducting electronic assessments prior to the pandemic. Five key training areas were identified – IT skills, clinical skills, therapeutic skills, autism-specific skills, and reliability meetings.

Summary

Clinicians in this and other studies have raised concerns about validity and reliability of telehealth assessments, amplified by the fact that they are unable to use tools validated for use in-person and they may not be trained in alternatives. However, most clinicians interviewed were happy to work this way and felt it was in keeping with traditional, in-person appointments, but this may raise further considerations around ensuring parity of provision.

A consistent theme in the literature is the challenge in assessing the subtleties of social communication via videoconferencing.

Digital poverty was highlighted as a major contributory factor in increasing healthcare disparities, reflecting the findings of studies on telehealth autism services.

Publication reference: PRN00682