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      Should we be accepting self-referrals for Autism assessments?

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          The Leeds Autism Diagnostic Service (LADS) is an all IQ service accepting professional and self-referrals, from age 18, for diagnostic assessment. LADS is unusual compared to other diagnostic services in England, in that it accepts self-referrals. The purpose of this paper is to compare diagnostic outcome between self-referrals and other referral sources.


          This is a service evaluation of all 692 referrals for diagnostic assessment into LADS, over a three year period, from 2016 to 2018. The diagnostic outcomes were compared between self-referrals and other referral sources. Secondary analysis looked at age and gender differences between these groups.


          There were 98 self-referrals over three years with autism diagnosed in 65 per cent. In total, 594 other referrals were received during this time period, with autism diagnosed in 44 per cent. This showed a significant difference of 21 per cent with 95% confidence intervals of 10–31 per cent ( p=0.0001) using a n−1 χ 2 test. In total, 59 per cent of self-referrals were from patients identifying as female, which compared to 35 per cent identifying as female from other referrals. This was a difference of 24 per cent with 95% confidence interval of 14–34 per cent ( p<0.0001) on the n−1 χ 2 test.

          Research limitations/implications

          Factors which may influence the ability to generalise from these results are: that LADS covers a large mainly urban and suburban area with a range of ethnic and socioeconomic diversity; that LADS is an all IQ service unlike some other autism diagnostic services; historical and service-related factors unique to Leeds may be dissimilar to other locations. It was beyond the scope of this evaluation to perform a qualitative analysis to compare the referral sources, but this may be an area for further study.

          Practical implications

          This evaluation supports the use of a self-referral route for adult autism diagnostic services on a local level and may support its use more widely in other services.

          Social implications

          This evaluation, in demonstrating proportionately significantly higher autism diagnosis from self-referrals is likely to be reducing the work load of professionals who would normally make referrals. Alternatively, it may be capturing a subgroup of the autism population who would not otherwise have sought diagnosis. In either scenario, it supports and is consistent with a patient centred approach to accessing appropriate diagnostic services.


          The authors are not aware that any previous evaluation of this nature has been conducted and feel this evaluation supports the use of a self-referral pathway in adult autism diagnostic services.

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          Most cited references 11

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          Is Open Access

          Associations between self-referral and health behavior responses to genetic risk information

          Background Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies. Methods Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer’s disease (AD). We tested whether self-referred participants (SRPs) were more likely than actively recruited participants (ARPs) to report health behavior and advance planning changes after AD risk and APOE genotype disclosure. Results Of 795 participants with known recruitment status, 546 (69%) were self-referred and 249 (31%) had been actively recruited. SRPs were younger, less likely to identify as African American, had higher household incomes, and were more attentive to AD than ARPs (all P < 0.01). They also dropped out of the study before genetic risk disclosure less frequently (26% versus 41%, P < 0.001). Cohorts did not differ in their likelihood of reporting a change to at least one health behavior 6 weeks and 12 months after genetic risk disclosure, nor in intentions to change at least one behavior in the future. However, interaction effects were observed where ε4-positive SRPs were more likely than ε4-negative SRPs to report changes specifically to mental activities (38% vs 19%, p < 0.001) and diets (21% vs 12%, p = 0.016) six weeks post-disclosure, whereas differences between ε4-positive and ε4-negative ARPs were not evident for mental activities (15% vs 21%, p = 0.413) or diets (8% versus 16%, P = 0.190). Similarly, ε4-positive participants were more likely than ε4-negative participants to report intentions to change long-term care insurance among SRPs (20% vs 5%, p < 0.001), but not ARPs (5% versus 9%, P = 0.365). Conclusions Individuals who proactively seek AD genetic risk assessment are more likely to undergo testing and use results to inform behavior changes than those who respond to genetic testing offers. These results demonstrate how the behavioral impact of genetic risk information may vary according to the models by which services are provided, and suggest that how participants are recruited into translational genomics research can influence findings. Trial registration ClinicalTrials.gov NCT00089882 and NCT00462917 Electronic supplementary material The online version of this article (doi:10.1186/s13073-014-0124-0) contains supplementary material, which is available to authorized users.
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            Self-referral of symptoms (SOS) follow-up system of appointments for patients with uncertain diagnoses in rheumatology out-patients.

            Clinical features in rheumatological conditions often fluctuate with time and this may cause difficulty when evaluating patients whose symptoms or signs do not coincide with their initial rheumatology visit. The aim of this study was to evaluate the outcome of a follow-up system whereby patients with uncertain rheumatological diagnoses at their initial assessment are given easy and rapid access to a rheumatology review. We studied the outcome of SOS (self-referral of symptoms) appointments offered to patients over a 44-month period in one consultant's clinic at the Staffordshire Rheumatology Centre. The reattendance rates and diagnoses at the initial and subsequent visits were evaluated over a mean period of 26.3 months (range 7-64 months). Thirty-seven patients (23 males, 14 females) were offered SOS appointments during the period studied. At the initial assessment, a provisional diagnosis was recorded for 29 patients (78.4%), whereas the diagnosis was unclear for the other eight patients. At the end of the study period, 10 patients (27%) had requested specialist review via the SOS system after a mean period of 6.8 months (1-19 months). The diagnosis remained unchanged in 8 of the 10 reattenders, whereas the diagnosis was revised in two patients. None of these patients, however, developed an inflammatory arthritis. We suggest that an SOS system of appointments may be a feasible and practical method to follow up patients who have uncertain rheumatological diagnoses at their initial visit. This follow-up system may not easily fit into the current out-patient reforms being implemented in the National Health Service, yet this form of specialist follow-up seems clinically essential for some forms of disease management. The requirements necessary to operate such a system as well as the envisaged pros and cons for the patient and for the rheumatologist are discussed.
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              Is physiotherapy self-referral with telephone triage viable, cost-effective and beneficial to musculoskeletal outpatients in a primary care setting?

              The aim of the present study was to establish if physiotherapy self-referral (SR) is viable, cost effective and beneficial to musculoskeletal outpatients in a primary care setting.

                Author and article information

                Advances in Autism
                Emerald Publishing
                10 December 2019
                : 6
                : 2
                : 121-127
                Leeds Autism Diagnostic Service, Aire Court Community Unit, Leeds, UK
                Leeds and York Partnership NHS Foundation Trust, York, UK
                638442 AIA-09-2019-0027.pdf AIA-09-2019-0027
                © Emerald Publishing Limited
                Page count
                Figures: 1, Tables: 1, Equations: 0, References: 13, Pages: 6, Words: 3138
                research-article, Research paper
                cat-HSC, Health & social care
                cat-LID, Learning & intellectual disabilities
                Custom metadata

                Health & Social care

                Professional referrals, Diagnosis, Autism, Self-referral, Intellectual disability


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