Different possible options, their costs, benefits and challenges
| Screening option | Marginal costs associated/1000 | Incremental yield | Efficiency | Responsiveness |
|---|---|---|---|---|
| 0 No first year screening (responsive service only) | None | Yield estimate uncertain - maybe < 0.2 per 1000 in first year (<20%) | Very poor: Cost per case indeterminate | Poor (with possible exception of profound PCHI) |
| H0 Universal IDT | £29.2k Total = £29.2k | Present average yield is 0.25 which might be increased to 0.4 with good quality control | Poor: Cost per case £90-£110k | Fair |
| H1 Hall report recommendations: Targeted neonatal screening: introduce targeted screening where not already implemented and make more systematic where very limited at present Universal IDT | £5.7k £29.2k Total = £34.9k | Yield estimates if both NICU and family history groups can get high coverage and better HVDT quality control 0.5 per 1000 by six months, 0.75 per 1000 by 1 year | Poor: Cost per case about £45k (incremental cost per case for IDT about £110k) | Fair |
| H2 As for H1, but following R&D implement technologically advanced IDT, with increased levels of stimuli | As for H1, with IDT reducing to about £23k Total = £28.1 | Yield as per H1, possibly increasing to 0.8 per 1000 by 1 year | Fair: Cost per case about £35k (incremental cost per case for IDT about £90k) | Fair |
| H3 As for H1, but replace Universal IDT with 6-8 m universal HV surveillance by questionnaire | As for H1, with HV costs reducing to £23.4k? Total = £29.1k | Yield as per H1 or slightly less, particularly the moderates | Poor: Cost per case about £50k (incremental cost per case for IDT about £95k) | Fair |
| T1 Targeted neonatal screening: introduce targeted screening where not already implemented and make more systematic where limited at present | AS for H1, but no HVDT Total = £5.7k | Yield estimates, given high coverage of both NICU and family history children, 0.5 per 1000 by six months, but probably poor thereafter | Fair to good: Cost per case about £11.4k | Fair |
| T2 As for H1, but replace IDT with targeted infant distraction test | As for H1, but IDT possibly reducing to about £9k Total = £14.7k | Yield likely to be more than T1 but less than H1 | Good: Cost per case about £19.3k | Good |
| U1 Introduce universal neonatal screening | £15.8k Total = £15.8k | Yield 0.9 per 1000 by six months | Very good: Cost per case about £17k | Good |
| U2 Introduce universal neonatal screening Modify infant distraction test to be targeted on those not tested and high risk of progressive PCHI | £15.8k £3.5k Total = £19.3k | Yield 0.9 per 1000 by six months and possibly 1.0 per 1000 by one year | Very good: Cost per case about £19.3k (incremental cost per case for IDT £34k, very approximate) | Very good |
| Equity | Benefits | Challenges |
|---|---|---|
| Very low | Releases time/money to invest in responsive system, improvement of habilitation facilities for severe/profound | Moderate and severe PCHI not identified until >2 y, possible identification if language screen about 2 y |
| Low | Would consolidate present services and remove uncertainty for HVs | Need better training, facilities and quality standards for IDT ID age suboptimal |
| Medium | Little change to system, would help build up targeted screening | Need better training, facilities and quality standards for IDT, for targeted screening and for very early habitation in all districts Implementation of family history difficult Overall sensitivity of system poor ID age suboptimal |
| Medium | Limited change to system, and better test possible for IDT if accepted | As H1, but sensitivity possibly better New equipment needs to be developed, evaluated and bought |
| Medium Low sensitivity for moderate losses | Limited change to system, well trialed already. More in line with HV mission | As per H1 |
| Low | Better quality control possible | As per H1, tuning the responsive system to find the remaining 0.6 per 1000, possibly needing to spend more on HVS |
| Medium Likely to miss ethnic minority and low SEGs | Better quality control possible, if less HVs involved, or specialist referral system | As per H1 plus definition of HV target population, crucial to combat inverse care law, needs research to define |
| Medium | Age ID very good Greater potential for habilitation and education to give benefit | Training, coordination and follow-up pose significant implementation challenges. What to do for those not tested and for late onset/progressive cases National support needed |
| High | Age of ID best that can be achieved for all PCHI groups Greater potential for habilitation and education to give benefit | Training, coordination and follow-up pose significant implementation challenges, including how to target progressive cases National support needed |
It is assumed (i) that there will be Health Visitor Surveillance for all children age 0-5 years (as per Health For All Children, cost unknown) and (ii) that the School Entry Screen will be retained for all options (at a cost of about £3.5-4.5k per live births). All costs standardised to per 1000 live births (not 1000 children tested). The 1000 cost per case identified is a broad estimate based on the programme cost and yield.