Results from a retrospective case finding and re-engagement exercise for people previously diagnosed with hepatitis C virus to increase uptake of directly acting antiviral treatment

doi:10.21203/rs.3.rs-3611599/v1

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Research Article

Results from a retrospective case finding and re-engagement exercise for people previously diagnosed with hepatitis C virus to increase uptake of directly acting antiviral treatment

https://doi.org/10.21203/rs.3.rs-3611599/v1

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published 06 Sep, 2024

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Background

Direct acting antivirals (DAAs) for the Hepatitis C virus (HCV) have shifted the World Health Organisation global strategic focus to the elimination of viral hepatitis by 2030. In England, the UK Health Security Agency (UKHSA) led a national ‘patient re-engagement exercise’, using routine surveillance data, which was delivered through the HCV Operational Delivery Networks (ODNs) with support from NHSE, to help find and support people previously diagnosed to access treatment. We report a quantitative evaluation of outcomes of this exercise.

Methods

Individuals with a recorded diagnosis of HCV (antibody or RNA) between 1996 and 2017 were identified using UKHSA’s records of HCV laboratory diagnosis. Linkage with established health-care datasets helped to enhance patient identification and minimise attempts to contact deceased or previously treated individuals. In September-November 2018 each ODN was provided with a local list of diagnosed individuals, asked to perform further data quality checks through local systems and then write to each individual’s GP to inform them that the individual would be contacted by the ODN to offer confirmatory HCV RNA testing, assessment and treatment unless the GP advised otherwise. ODNs then contacted patients and data were collected in 2022.

Results

Of 176,555 individuals with an HCV laboratory report, 55,329 individuals were included in the exercise following linkage to healthcare datasets and data reconciliation. Participants in the study had a median age of 51 years (IQR: 43, 59), 36,779 (65.5%) were males, 47,668 (86.2%) were diagnosed before 2016 and 11,148 (20.2%) lived in London. Of the study population, 7,442 (13.4%) had evidence of treatment after the re-engagement exercise commenced, 6,435 (11.6%) were reported as RNA negative (96% of whom had no previous treatment records), 4,195 (7.6%) had prescription data indicating treatment before the exercise commenced or were reported to have been treated previously by their ODN, and 2,990 (5.4%) had died. The status of 32,802 (59.3%) people remains unknown.

Conclusions

A substantial number of those included had a treatment recorded after the exercise commenced, however, many more remain unengaged. Evaluation of the exercise highlighted areas that could be streamlined to improve future exercises.

HCV

retrospective

case-finding

evaluation

The introduction of direct acting antiviral treatments (DAAs) for the Hepatitis C virus (HCV) in 2015, which are known to cure HCV in the majority of those treated(1), shifted the WHO global strategy to the elimination of viral hepatitis as a public health threat by 2030.(2) The UK government has committed to this strategy, with the National Health Service England (NHSE) having an ambition to eliminate HCV ahead of the 2030 goal.(3) Part of this commitment involves efforts to re-engage into care people who had previously been diagnosed but who were no longer actively accessing services – this aligns with key impact targets of a reduction in both incidence of (through reduction in onward transmission) and mortality from viral hepatitis.

HCV infection in England is primarily driven by injecting drug use which is the reported risk factor for 77% of infections, with a third of people living with chronic HCV currently injecting drugs.(4) Engagement in services for people who inject drugs (PWID) was historically low and characterised by mistrust and discrimination.(5) Peer support for engagement and during treatment has shown promise in overcoming these barriers.(5)

There have been significant efforts to (re)test, (re)diagnose and (re)treat those living with chronic HCV since DAAs became widely available. In England, between 2016 and 2021, 73% of people who had a positive HCV RNA result had a record indicating DAA treatment initiation and 47% had a record indicating sustained virologic response (SVR).(6) As a result of this and through concerted efforts by partners across community, government and non-government groups, modelling estimates show a 45% decrease in HCV prevalence in England since 2015.(6) England has seen declines in mortality and morbidity associated with end stage liver disease (ESLD) and hepatocellular carcinoma (HCC) with England surpassing the WHO’s target for reduction in mortality.(4) Successful treatment has also led to significant improvements in quality of life.(7)

However, England had a notable population of people known to be living with chronic HCV before the advent of DAAs.(4) The long latent period associated with HCV meant that many individuals may not have been aware that they had previously acquired HCV. Prior to DAA release, the limited treatment options that were available had a poor side effect profile and relatively poor outcomes. As a result, many people living with HCV never accessed treatment services or, if they did, were unable to complete the full course of treatment and/or subsequently disengaged with services. To support people previously diagnosed with HCV to be treated for their infection with the new DAAs, the UK Health Security Agency (UKHSA), in partnership with NHSE, launched a national ‘HCV patient re-engagement exercise’ to help find and support engagement in care for these individuals by collaborating with the Operational Delivery Networks (ODNs) which were charged with routine care and treatment of people with HCV infection.(8) The re-engagement exercise was launched in collaboration with peer support and patient advocacy groups who co-produced patient-facing resources, GP letters and outreach services.

In this paper we aim to (a) describe the implementation of the HCV re-engagement exercise, and (b) report on the quantitative process and outcome evaluation of using laboratory surveillance data as a prompt for re-engagement into care and increasing treatment uptake.

Laboratory surveillance data:

Routine laboratory reports of HCV diagnosis (defined as the detection of HCV antibody (anti-HCV) and/or HCV RNA) to UKHSA by diagnostic laboratories were used to identify individuals diagnosed with HCV between 1996 and 2017 (n = 176,555).

Laboratory HCV reports have been submitted to UKHSA and predecessor organisations from NHS laboratories through surveillance forms or electronically since 1990, with more robust systems since 1996. Reporting completeness further improved when laboratory notification of a diagnosis of viral hepatitis became mandatory in 2010. It is not possible to consistently distinguish those with active infection (based on a positive HCV RNA result) from those with cleared infection as the system collects mainly anti-HCV results, and so laboratory ‘confirmed’ cases are a mixture of those with current and cleared infections. Laboratory reports include basic demographics (name, date of birth, sex, NHS number).

Data processing and linkage to generate patient lists:

A number of steps were taken to clean, reconcile and link data to generate patient lists. (Fig. 1) Of the 176,555 individuals with and HCV diagnosis recorded since 1996, 42,426 were excluded as minimal identifiable data was not available. Individuals with name, date of birth, and/or NHS number (134,129) were linked to the NHS spine (Personal Demographics Service (PDS)) to cross-check identifiable information and to identify their current registered GP surgery. In total, 100,026 individual records were linked to the spine via NHS number, and 14,461 were linked through alphanumeric matches. Of these, 7404, were excluded due to a non-perfect link on name, date of birth or sex between the information reported on the spine and that reported with the diagnosis record.

Through linking to registered deaths provided by the ONS and/or a died flag in the NHS spine, 20,112 of the 107,983 individuals believed to have died were excluded, with a further 7578 excluded who were not registered with a GP or who registered with a GP outside England.

Finally, the remaining individuals (79,400) were linked to the HCV patient registry and treatment outcome database (NHSE registry), which stores records of all individuals referred to ODNs for DAAs. A further 23,370 individuals already known to the ODNs were excluded as a result, as were those first diagnosed after 2017 (n = 701), leaving details of 55,329 individuals to be distributed to the ODNs. Individuals were assigned to an ODN using their current residential postcode or registered GP postcode retrieved through linking to the NHS Spine.

Additional flags were added to the patient lists if an individual was also found on other surveillance and healthcare datasets e.g. sentinel surveillance of blood-borne virus testing (SSBBV), Hospital Episode Statistics (HES), the NHS Blood and Transplant (NHSBT) registry, to add assurance of further evidence of HCV testing and care, to validate personal confidential data (name, date of birth, sex, NHS number) and to avoid sending letters to individuals not requiring any intervention (e.g., those who had already had a liver transplant).

Implementation:

Between September - November 2018, UKHSA, through a secure electronic file transfer platform, provided each ODN with a list of eligible individual residents in their ODN area. UKHSA published guidance to GPs and ODNs, patient and GP leaflets, and template letters, co-developed with the Hepatitis C Trust and NHSE, to support the re-engagement exercise.(8)

As laboratory data were submitted to UKHSA for surveillance purposes rather than for direct patient care, the reporting and completeness of identifiers and data is variable. The main information governance risks identified were a) accidental or inadvertent disclosure; b) incidental or inappropriate notification; c) incorrect diagnoses due to erroneous coding at testing laboratory or poorer performance of older assays; and d) missed diagnoses due to underreporting and/or incomplete or incorrect information entered on data systems. To mitigate these risks, a conservative, deterministic linkage process was followed to generate the patient list. ODNs undertook further quality checks of the data with their local IT systems (e.g., laboratory, patient administrative, and treatment databases) to verify the HCV status and contact details of the individual and wrote to each individual’s GPs to inform them that they would be contacting their patients to offer confirmatory testing (HCV RNA) and assessment for HCV treatment, unless the GP raised concerns. The MoU stipulated that ODNs were responsible for local information and clinical governance, including provision of appropriate care pathways.

Evaluation:

An evaluation of the re-engagement exercise was developed with four key phases: phase 1: baseline survey (through structured interviews) of the capacity of ODNs and their plans to use the patient lists for case-finding initiatives (9); phase 2: quantitative assessment with process and outcome indicators; phase 3: qualitative assessment of public and professional perspectives of the re-engagement exercise; and phase 4: economic assessment of the cost effectiveness of the intervention.

This paper focuses on phase 2. Process indicators included whether contact was made with an individual, and the reasons why contact was not made. Outcome indicators include treatment uptake, and reasons for non-treatment (e.g., PCR negative, previous treatment, or death). (Table 1) To measure process and outcome indicators, ODNs were asked to (i) complete standardised monitoring and evaluation spreadsheets (Supplementary information 1), and (ii) to flag ‘re-engagement exercise’ as the reason for referral on the NHSE HCV patient registry and treatment outcome database.

Table 1

Definition of re-engagement process and outcomes indicators
Process	Definition
Contacted	An individual was considered to have been contacted if an engagement letter was sent or a phone call was made, and this was indicated in the comments field (in returned spreadsheets). This included where a letter was not delivered e.g., where the letter was returned to sender.
Not contacted	Any of the following: - Where an ODN reported that a person had not been contacted - Where an ODN did not have up-to-date contact details - Where a person had transferred ODN - Where a person was already known to the ODN but not on treatment - Where the ODN indicated they were awaiting a GP response* or where an individual was inappropriate to contact
Outcome	Definition
Treated since re-engagement exercise launch	People who have a record in the NHSE treatment registry from 2018 onwards.
Not treated since re-engagement	People with no record in the NHSE treatment registry since 2018. No evidence of treatment since the re-engagement exercise commenced.
Inappropriate to contact	People with complex lifestyles which make treatment challenging, where a decision not to treat had been made by the Multidisciplinary team (MDT), where a person was under palliative care or if a GP objected to contact being made.
Require follow-up	People who responded to ODN contact during the study but are yet to present for testing or have not yet started treatment.
Declining to engage	People who responded to ODN contact during the study and declined testing or treatment and people were already known to the ODN prior to the exercise who have yet to commence treatment.
Treated before study	People who have a record in the NHSE treatment registry in 2017 or earlier.
PCR negative	People who were reported as PCR negative by an ODN.
Deceased	If a person was reported as deceased either through ONS mortality data or ODN data.
Awaiting bloodwork	People who had blood drawn by a GP or ODN but for whom results were not yet available when ODNs shared their data.
Transferred	People reported as having moved their treatment to another ODN.
Emigrated	People who were reported to have moved abroad.
Liver related events	People who were reported to have received a liver transplant, who were experiencing end stage liver disease, or who had a Hepatocellular carcinoma (HCC) diagnosis and were still alive.
Unknown status	People who remained unresolved following the re-engagement exercise. This includes people with no contact details, who did not respond to contact from the ODN, who had moved out of the area, or for whom the ODN had no records.
* Awaiting GP response – Where GPs were yet to indicate whether a person was appropriate to contact

Eleven of the 22 ODNs returned the data in monitoring and evaluation spreadsheets and in quarterly reports to NHSE on activity. Because of low response or missing data in the monitoring and evaluation spreadsheets from some ODNs, we supplemented information received from ODNs by re-linking individuals on the lists: (i) to the NHSE registry to identify those who had received treatment after the list was shared with ODNs and/or had ‘re-engagement exercise’ flagged as the reason for referral and (ii) to the ONS deaths database to determine any individuals who had subsequently died.

Data analysis:

For individuals included in the final lists to ODNs, we calculated counts and proportions of different socio-demographic characteristics.

We subdivided the dataset into three groups based on individuals with data reported on: (i) both outcomes and processes (e.g., whether contact was attempted); (ii) outcomes but not processes; and (iii) no outcomes or processes. We report on outcomes from the re-engagement exercise for the whole cohort and for these three groups. We also present flow charts and outcomes by these three groups.

For individuals remaining with an unknown outcome, we report on the distribution of unknown status by age, sex, and year of diagnosis.

We also present counts and proportions for ICD-10 causes of death and contributory factors as reported in ONS data.

Ethics:

Doctors and laboratory directors are mandated by law to report any new diagnoses of HCV as it is a notifiable organism (however it is unknown whether this stipulation is always followed).(10) The UKHSA collects this information for disease surveillance and to control and prevent the spread of infectious diseases under Section 251 of the NHS Act 2006 and the Health Service (Control of Patient Information) Regulations 2002 (regulation 3 / ‘section 251 support’). This allows UKHSA to process personal confidential data without consent. For this exercise, UKHSA sought specific Caldicott approval to share historic laboratory surveillance data with ODNs. In its approval, UKHSA’s Caldicott panel indicated that the information governance and confidentiality risks specified within the application were outweighed by the public health benefits in terms of providing treatment to people who may otherwise suffer morbidity and mortality from untreated HCV related liver disease, and by preventing onward transmission of HCV.

Prior to release of patient identifiable data to the ODNs, each ODN signed a Memorandum of Understanding (MoU) with data sharing agreement which outlined that these data should be used solely for the purpose for which special Caldicott permission was received, and not, for example, used for research or shared with academic or commercial entities. The MoU also restated the recipient’s responsibilities about data security, storage and legitimate sharing of data with those involved in direct patient care, as well as the steps that needed to be taken to mitigate information governance risks.

Re-engagement lists provided to ODNs:

Re-engagement lists varied in size ranging from 1050 individuals sent to the Leicester ODN to 5429 individuals sent to the Greater Manchester and Eastern Cheshire ODN. (Supplementary information 2)

Demographic characteristics of patients on lists provided to ODNs:

Of 55,329 individuals included in the re-engagement exercise, 36,779 (65.5%) were males, the group had a median age of 51 years (IQR:43, 59) at the time of analysis (2023), 47,668 (86.2%) were diagnosed before 2016, and 11,148 (20.2%) were resident in London. (Table 2)

Table 2

Demographic characteristics and outcomes disaggregated by if an ODN returned data.
	Total	ODN returned data	No ODN data
	55329	25,813	29,516
Demographics	N (%)	N (%)	N (%)
Sex
Female	18550 (33.5)	8,738 (33.9)	9,812 (33.2)
Male	36779 (66.5)	17,075 (66.1)	19,704 (66.8)
Age (years)
< 25	835 (1.5)	346 (1.3)	489 (1.7)
25–34	2096 (3.8)	960 (3.7)	1136 (3.9)
35–44	12638 (22.8)	5424 (21.0)	7214 (24.4)
45–54	17861 (32.3)	8054 (31.2)	9807 (33.2)
55–64	14000 (25.3)	6888 (26.7)	7112 (24.1)
65+	7899 (14.3)	4141 (16.0)	3758 (12.7)
Year of diagnosis
1993–2000	2926 (5.3)	1528 (5.9)	1398 (4.7)
2001–2005	8230 (14.9)	3531 (13.7)	4699 (15.9)
2006–2010	15531 (28.1)	7125 (27.6)	8406 (28.5)
2011–2015	20981 (37.9)	10056 (39.0)	10925 (37.0)
2016–2017	7656 (13.8)	3570 (13.8)	4086 (13.8)
Missing	5 (0.01)	3 (0.01)	2 (0.01)
Region of residence
North-West	10796 (19.5)	2763 (10.7)	8033 (27.2)
North-East	9319 (16.8)	3228 (12.5)	6091 (20.6)
Midlands & East	11784 (21.3)	3593 (13.9)	8191 (27.8)
London	11148 (20.2)	5070 (19.6)	6078 (20.6)
South-West	4912 (8.9)	4912 (19.0)	0 (0)
South-East	7370 (13.3)	6247 (24.2)	1123 (3.8)
Outcomes
Unknown status	33349 (60.3)	11466 (44.4)	21883 (74.1)
Deceased	2990 (5.4)	1367 (5.3)	1623 (5.5)
Treated since study	7442 (13.4)	3381 (13.1)	4061 (13.8)
PCR negative	6435 (11.6)	6435 (24.9)
Treated before study	4195 (7.6)	2246 (8.7)	1949 (6.6)
Transferred	167 (0.3)	167 (0.6)
Awaiting bloodwork	35 (0.1)	35 (0.1)
Require follow-up	276 (0.5)	276 (1.1)
Declined to engage	411 (0.7)	411 (1.6)
Decision not to treat	29 (0.1)	29 (0.1)

Reporting by ODNs:

The 11 ODNs that returned data accounted for 25,813 (46.7%) of all the individuals included in the re-engagement exercise. (Table 2) Returned data varied in detail and completeness with two ODNs returning outcome data but no process data (e.g., number of people contacted).

Of eleven ODNs that did not return data, 4 (36.4%) reported preliminary findings in quarterly ODN reports, and 1 (9.1%) had published results from the re-engagement exercise which showed significant variation in its implementation.(11)

Process indicators:

Of 25,813 individuals from ODNs that returned data, 9197 (35.6%) had process indicators reported in their record of whom 4750 (51.6%) were contacted by their ODN. Of these, initial investigations excluded 263 individuals who had died and 17 children, 2317 (48.8%) responded, 2215 (46.6%) did not respond (115 letters returned to the ODN) and 38 (0.8%) could not be further engaged for multiple reasons. Of the 4447 with process indicators who had not been contacted, reasons for no contact included: known to be PCR negative (1612, 36.2%); receipt of treatment before the exercise (265, 6.0%); known to ODN but no evidence of treatment (413, 9.3%); known to ODN and treated (377, 8.5%); transferred care (167, 3.8%); awaiting results (4, < 0.1%); GP indicated inappropriate to contact (11, < 0.1%); emigrated (3, < 0.1%). A further 108 (2.4%) individuals had not been contacted as the ODN was still awaiting a GP response. Finally, 1387 individuals could not be contacted by the ODN either because ODNs did not have up-to-date contact details (513, 11.5%), or they remained unknown to the ODN (no record found) and were therefore considered to be ‘not engaged’ with services (874, 19.6%). (Fig. 2)

Re-engagement outcomes:

All ODNs:

Of 55,329 individuals included in the re-engagement exercise, 7,442 (13.4%) had accessed treatment since the re-engagement exercise commenced, 2,990 (5.4%) were found to have died, 6,435 (11.6%) were reported as RNA negative (96% of whom had no previous treatment records¹), 4,195 (7.6%) had prescription data indicating treatment before the exercise commenced or were reported as previously treated by their ODN, 547 (1.0%) were children, 411 (0.7%) declined to engage, 276 (0.5%) had not yet attended a planned ODN appointment, 167 (0.3%) were reported to have transferred their treatment elsewhere, 35 (0.1%) were awaiting blood test results, 12 (< 0.1%) had emigrated, 9 (< 0.1%) were inappropriate to contact and 8 (< 0.1%) had a liver related event. The remaining 32,802 (59.3%) people had an unknown status. (Table 3)

Table 3

Crosstabulation of demographic characteristics and outcomes of individuals included in the re-engagement exercise. (~ Require follow-up refers to individuals who responded to contact from the ODN but had not yet received treatment when data was sent, * Decision not to treat includes emigrations and people who were inappropriate to contact)
		Outcomes
		Treated	Not treated
	Total	Treated since study	Treated before study	Deceased	PCR negative	Transferred	Awaiting bloodwork	Require follow-up~	Refused to engage	Decision not to treat*	Unknown status
	55329	7442	4195	2990	6435	167	35	276	411	29	33,349
Demographics	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)	N (%)
Sex
Female	18550 (33.5)	1947 (26.2)	1241 (29.6)	886 (29.6)	2475 (38.5)	59 (35.3)	11 (31.4)	86 (31.2)	145 (35.3)	10 (34.5)	11690 (35.1)
Male	36779 (66.5)	5495 (73.8)	2954 (70.4)	2104 (70.4)	3960 (61.5)	108 (64.7)	24 (68.6)	190 (68.8)	266 (64.7)	19 (65.5)	21659 (64.9)
Age (years)
< 25	835 (1.5)	21 (0.3)	25 (0.6)	4 (0.1)	82 (1.3)	1 (0.6)	0 (0.0)	1 (0.4)	7 (1.7)	0 (0.0)	694 (2.1)
25–34	2096 (3.8)	377 (5.1)	191 (4.6)	27 (0.9)	185 (2.9)	7 (4.2)	0 (0.0)	14 (5.1)	13 (3.2)	1 (3.4)	1281 (3.8)
35–44	12638 (22.8)	2227 (29.9)	1061 (25.3)	349 (11.7)	1385 (21.5)	42 (25.1)	5 (14.3)	54 (19.6)	52 (12.7)	3 (10.4)	7460 (22.4)
45–54	17861 (32.3)	2836 (38.1)	1389 (33.1)	888 (29.7)	2010 (31.2)	54 (32.3)	6 (17.1)	79 (28.6)	107 (26.0)	6 (20.7)	10486 (31.4)
55–64	14000 (25.3)	1506 (20.2)	1016 (24.2)	822 (27.5)	1779 (27.6)	34 (20.4)	10 (28.6)	86 (31.2)	128 (31.1)	5 (17.2)	8614 (25.8)
65+	7899 (14.3)	475 (6.4)	513 (12.2)	900 (30.1)	994 (15.4)	29 (17.4)	14 (40.0)	42 (15.2)	104 (25.3)	14 (48.3)	4814 (14.4)
Year of diagnosis
1993–2000	2926 (5.3)	333 (4.5)	164 (3.9)	190 (6.4)	307 (4.8)	16 (9.6)	7 (20.0)	21 (7.6)	91 (22.1)	0 (0.0)	1797 (5.4)
2001–2005	8230 (14.9)	1027 (13.8)	502 (12.0)	509 (17.0)	752 (11.7)	19 (11.4)	2 (5.7)	69 (25.0)	113 (27.5)	1 (3.4)	5236 (15.7)
2006–2010	15531 (28.1)	1990 (26.7)	1075 (25.6)	789 (26.4)	1927 (29.9)	59 (35.3)	14 (40.0)	57 (20.7)	117 (28.5)	11 (37.9)	9492 (28.5)
2011–2015	20981 (37.9)	2814 (37.8)	1752 (41.8)	1059 (35.4)	2663 (41.4)	61 (36.5)	7 (20.0)	98 (35.5)	66 (16.1)	14 (48.3)	12447 (37.3)
2016–2017	7656 (13.8)	1278 (17.2)	702 (16.7)	443 (14.8)	785 (12.2)	12 (7.2)	5 (14.3)	31 (11.2)	24 (5.8)	3 (10.4)	4373 (13.1)
Missing	5 (0.01)	0 (0.0)	0 (0.0)	0 (0.0)	1 (0.01)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	4 (0.01)
Region of residence
North-West	10796 (19.5)	1770 (23.8)	460 (11.0)	659 (22.0)	530 (8.2)	0 (0.0)	1 (2.9)	55 (19.9)	2 (0.5)	1 (3.4)	7318 (21.9)
North-East	9319 (16.8)	1277 (17.2)	764 (18.2)	498 (16.6)	1449 (22.5)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)	5331 (16.0)
Midlands & East	11784 (21.3)	1652 (22.2)	560 (13.4)	609 (20.4)	739 (11.5)	0 (0.0)	34 (97.1)	98 (35.5)	1 (0.2)	0 (0.0)	8091 (24.3)
London	11148 (20.2)	1023 (13.7)	891 (21.2)	526 (17.6)	787 (12.2)	0 (0.0)	0 (0.0)	0 (0.0)	6 (1.5)	0 (0.0)	7915 (23.7)
South-West	4912 (8.9)	611 (8.2)	862 (20.5)	283 (9.5)	1642 (25.5)	0 (0.0)	0 (0.0)	78 (28.3)	385 (93.7)	22 (75.9)	1029 (3.1)
South-East	7370 (13.3)	1109 (14.9)	658 (15.7)	415 (13.9)	1288 (20.0)	167 (100.0)	0 (0.0)	45 (16.3)	17 (4.1)	6 (20.7)	3665 (11.0)

ODNs that returned data:

Among those where contact was attempted and who responded (2317/4750), 939 (40.5%) were treated for HCV after the exercise commenced, 649 (28.0%) were PCR negative, 419 (18.1%) had received treatment prior to the re-engagement exercise, 276 (11.9%) had not yet received treatment and required further follow-up, and 34 (1.5%) were awaiting blood test results. A further 21 refused treatment, 9 were not to treated due to medical reasons and 8 had emigrated. (Fig. 2)

Of 16,616 individuals with outcomes but no process data, 2,146 (12.9%) had been treated since the beginning of the re-engagement exercise (post-2017), 4,437 (26.7%) were PCR negative, 1,692 (10.2%) had previously received treatment (pre-2017), and the remaining 7,585 (45.6%) [11 reported as PCR positive but not treated and 7,574 who remained unknown to the ODN] were considered to be ‘not engaged’ with services. (Fig. 3)

ODNs that did not return data:

Through linking to ONS death registrations and the HCV patient registry and treatment outcome database (NHSE registry), of the 29,516 individuals where no process or outcome data was returned, 1,623 (5.5%) had died, 1,949 (6.6%) had been previously treated (pre-2017) and 4,061 (13.8%) had been treated since the commencement of the re-engagement exercise (post-2017). (Supplementary Fig. 1)

Unknown outcomes:

All ODNs:

Of 55,329 individuals included in the re-engagement exercise, 33,349 (60.3%) continued to have an unknown outcome (547, 1.6% of whom were children). They had a median age of 51 years (IQR: 43, 60), 21,659 (64.9%) were male, and 26,312 (78.9%) were diagnosed between 2006–2017, the largest proportion of whom (12,447, 37.3%) were diagnosed between 2011–2015.

Only ODNs that returned data:

For ODNs that returned data, of 25813 individuals included in the exercise, 11,466 (44.4%) continued to have an unknown status (168 were children). They had a median age of 52 years (IQR: 44, 61), 7523 (65.6%) were male, and 9,117 (79.5%) were diagnosed between 2006–2015, the largest proportion (4,396, 38.3%) between 2011–2015.

Mortality:

Of 2,990 individuals who had died, 515 (17.2%) were missing an underlying cause. The leading single underlying cause of death, where available, was HCC accounting for 183 (7.4%) of deaths with a reported underlying cause, liver disease accounted for 300 (12.1%), and viral hepatitis for 88 (3.6%) of death. HCV was a contributory factor for 457 (15.3%) of deaths while HCC and ESLD were contributory factors for 222 (7.4%) and 227 (7.6%) of deaths respectively. (Supplementary information 3)

We report on a nation-wide exercise utilising national diagnostic testing surveillance data and established clinical networks to re-engage individuals who previously tested positive for HCV and to offer treatment to those confirmed HCV RNA positive. This collaborative effort between UKHSA and the NHSE ODNs resulted in 7,442 (13% rising to 18% when we exclude previously treated, PCR negative and those who died) individuals who were previously not engaged in care being prescribed HCV treatment. These individuals are estimated to represent 1 in 10 of the total number of individuals treated in England since 2015. We also found that 2,990 (5%) individuals had died of whom 15% had HCC and/or ESLD recorded as a contributing factor on their death certificate. Overall the exercise was unable to directly re-engage 60% of individuals thought to be alive.

Our overall findings are similar to those published by Birmingham ODN which reported modest (11.3%) response rates to letters and low (25%) confirmed SVR numbers.(11) A similar exercise was conducted in Wales in 2019, with 23% of people contacted re-engaging with services, and 10% completing treatment in the first phase.(12) Similar studies have also been conducted in the Netherlands with 15% and 9% of those contacted treated(13,14) and in France where individuals with a previous HCV consultation but who had no record of cure were contacted, treating and curing 8%.(15) The Relink program used medical record review to identify eligible participants, re-engaged 33% of 11,163 participants in six countries, and treated 6%.(16,17) Similar to this exercise, the Trap Hep C programme in Iceland used cross-referenced surveillance and laboratory data and managed to re-engage all 24 participants achieving SVR12 for 83%.(18) However, the scope and scale of the problem is dramatically different in Iceland with an estimated viraemic population of 1,100 compared to 81,000 in England. (4) A clinical trial sought to evaluate the effectiveness of letters, phone calls, and other incentives to re-engage people previously diagnosed with HCV in the Canary Islands finding that phone calls were more effective than letters for re-engaging participants.(19) Participants that were not re-engaged were more likely to have a history of drug use, to have tested in the pre-DAA era, and were less likely to have a prior specialist evaluation.(20) Other patient tracing and re-engagement studies concerned with HIV care have had varying results from using a combination of methods to re-engage patients who are lost to follow-up,(21–23) including text messaging,(24,25) telephone calls,(26–28) email,(22) letters,(29) and physical tracing.(30–32)

Newly treated individuals were a mixture of individuals already known to the ODN, and individuals not known, who might have been unaware of their infection, aware of their infection but not engaged with healthcare services, and/or unaware of the emergence of new, better tolerated and more effective treatments. The number of individuals treated suggests that using national surveillance data as the basis for patient re-engagement exercises has some utility, but requires further interrogation of additional data sources to refine and validate the data, engagement from all stakeholders, with extensive follow up and local data checks by the ODNs. In some instances, despite positive re-engagement some individuals refused treatment. It is important that these individuals have continuing support and access to treatment should they change their mind.

Approximately 12% of individuals included in the exercise were found to be PCR negative with only a small proportion (4%) having evidence of treatment. This could reflect several mechanisms including spontaneous clearance of infection,(33) treatment outside the NHS (privately or outside England), or failure to record treatment. Given the mix of antibody and PCR tests in the laboratory surveillance dataset, the study likely included some individuals without an active infection. For example, a study conducted in GP practices in Southwest England found only 40% of participants recorded as antibody positive were confirmed to be vireamic.(34) Whilst of historic concern, the routine use of reflex PCR testing of antibody positive samples and point-of-care PCR testing in England(11,35) will likely make this issue obsolete for future similar exercises.

The exercise also revealed that 5.4% of individuals included in the exercise had died. A substantial proportion had HCV, ESLD and/or HCC as either a direct or contributory cause of death. The advent of DAAs has rendered HCV a curable disease in the vast majority of cases, so these deaths might have been avoided with earlier engagement in care. These findings illustrate the importance of the test and treat models, and ongoing work by NHSE to simplify the care pathway to ensure that people testing positive for HCV RNA have quick and easy access to treatment.

We found that 60% of those on the lists shared with ODNs could not be re-engaged. The majority of this group were males, 40 years or older and the largest proportion had been diagnosed between 2011–2015. Another study reported lower re-engagement for individuals diagnosed in the era preceding widespread use of DAAs.(20) In our study, varied levels of re-engagement likely represent implementation and individual-level challenges. Implementation challenges include varying ODN engagement with 11 of the 22 ODNs not reporting data, thus limiting our ability to fully evaluate the exercise. Secondly, there was significant heterogeneity in the implementation approaches used by ODNs. In the phase 1 evaluation, ODNs reported several obstacles including a lack of dedicated human resources and funding which may have contributed to this variability. Thirdly, due to varying data completeness, many individuals could not be found in any of the records ODNs cross-checked or could not be contacted due to a lack of up-to-date contact details. Studies suggest that better infrastructure could improve re-engagement exercises, including simple fixes like regular data sharing between health facilities.(36) Many printed letters, which were the main mode of contacting individuals in the exercise, were unanswered or not delivered, and letters have been shown to be less effective than other methods e.g., phone calls.(19) Finally, the exercise was designed to make successful re-engagement independent of GP involvement as GPs are often overburdened and have competing priorities.(37,38) However, the largest proportion of diagnoses in laboratory surveillance are made through primary care(39), and studies have shown higher treatment initiation and SVR rates for participants treated in primary care.(40) Closer integration of primary care could result in better outcomes as some studies in primary care have shown moderate success.(34)

Individual barriers could include internal, person-specific mechanisms such as anticipated stigma which can reduce the likelihood of engagement with healthcare services(41), with some of those affected by HCV being distrustful of institutions charged with their care.(42) Additionally, some of the population included in this study are highly transient and mobile (e.g., PWID who access drug treatment and rehabilitation services around the country, people living in prisons, people experiencing homelessness). Other studies have identified patient mobility as a major barrier to engagement with services.(43,44)

Re-engagement in care is challenging because prior disengagement is often tied to several factors including dissatisfaction with services, insufficient knowledge of HCV and treatment outcomes, complex needs, competing priorities and concerns about treatment side effects.(45) As such, better service delivery models that minimise barriers and maximise engagement opportunities, using an approach informed by behavioural science need to be considered. Services must adapt to cater to transient and underserved populations. For example, there has been a recent move towards patient-centred care with services offered through the most convenient route for service users.(46,47) For more complex cases, future exercises will require improved implementation and strong track and trace components to ameliorate their impact. Awareness campaigns are also necessary to educate the wider public about new well-tolerated, easy to take treatments with high cure rates and to enable people to objectively assess their own risk.(48)

There will also be a need to reconsider the design of the the re-engagement process which could be achieved through a qualitative evaluation and behavioural insights from ODNs and the population they serve. More effective engagement of ODNs may be achieved through monetary incentivisation which has been shown to be effective in engaging healthcare professionals.(49) In addition, ODNs might benefit from more effective networked data infrastructure that enables them to communicate and share data. This will require governance and data sharing agreements. Implementation could be improved with more quality control and refining of datasets before they are shared. ODNs would also require more support with data cross-checks, clinical team capacity building through training, and implementation toolkits to facilitate future exercises.

Strict criteria were used to minimise data errors in creating the lists provided to the ODNs and mitigate information governance risks. A further 42,426 individuals were excluded from the initial exercise due to lack of sufficient identifiers to permit robust linkage to surveillance datasets and 27,046 were excluded due to inconsistencies in their data. (Fig. 1) This highlights the importance of comprehensive data. Investment is needed to ensure that surveillance data are complete to allow for those requiring treatment to be identified, enable the monitoring of changes in service capacity and effectiveness, and improve our ability to track progress to elimination. Our results suggest that some of the individuals not included in the initial lists and not currently engaged in healthcare services might benefit from some additional attempt to re-engage them, which will impact HCV elimination goals.(2)

Reasons for the variation in ODN response are not well understood and merit further investigation. Qualitative in-depth interviews are planned to understand implementation choices made by ODNs, the burden and workload to ODNs, barriers and facilitators of the exercise, as this will provide insights into the patient care pathway and could optimise future re-engagement efforts. There is a pressing need to involve patients to understand the acceptability and reasons underlying choices to re-engage or not and to accept or refuse treatment. While ODNs indicated that the exercise appeared acceptable to patients and reported no adverse consequences,(9) qualitative research is planned to explore participants’ experiences. A separate exercise to re-engage children is also being conducted by the paediatrics team.

There are several key strengths of the re-engagement exercise. Firstly, the data used was diagnostic testing data for England which was made notifiable for HCV in 2010 and therefore should include all diagnostic tests for HCV from that time, as well as a majority of those reported prior to 2010. Secondly, we made use of the availability of several established healthcare databases to build the re-engagement lists which allowed for triangulation of data especially concerning HCV diagnoses, treatment and death, which was further enhanced by local checks undertaken by ODNs. Data linkage allowed for a more comprehensive range of information from multiple sources than would have been obtained had we relied solely on ODN reports.(50,51) As such, this should be routine practice in re-engagement exercises to ensure optimal acquisition of outcomes, to resolve uncertainties and to reduce bias.

However, the exercise also had some limitations. Firstly, there was varying engagement from ODNs. As such, our analyses were restricted by the amount and quality of data returned by ODNs. Secondly, information governance issues especially between laboratories and ODNs significantly hampered the exercise. Third, many individuals were included on the basis of a positive HCV antibody test, some of these may represent past rather than current HCV infection. Fourth, we cannot attribute all treatment initiations reported to the re-engagement exercise as this reason was not consitently recorded in the NHSE registry. Finally, it is important to acknowledge that the COVID pandemic caused significant disruption to the exercise.

In conclusion, this exercise was a substantial and extensive undertaking facilitated by access to key data resources and the participation of multiple organisations. The use of HCV surveillance data to re-engage individuals into care resulted in a sizeable number of people with known HCV infection accessing treatment. Further work is needed to investigate how those engaged differ from those who continue to have an unknown infection or treatment status. Repeat re-engagement exercises with improved implementation and alternative, complementary elimination strategies should be considered.

Acknowledgements:

We would like to thank Mary Ramsay, Mark Gillyon-Powell, and Beatrice Emmanouil for their support in planning, implementation, and evaluation of the exercise. We acknowledge members of the NIHR HPRU in BBSTI Steering Committee: Professor Caroline Sabin (HPRU Director), Dr John Saunders (UK HSA Lead), Professor Catherine Mercer, Dr Hamish Mohammed, Professor Greta Rait, Dr Ruth Simmons, Professor William Rosenberg, Dr Tamyo Mbisa, Professor Rosalind Raine, Dr Sema Mandal, Dr Rosamund Yu, Dr Samreen Ijaz, Dr Fabiana Lorencatto, Dr Rachel Hunter, Dr Kirsty Foster and Dr Mamoona Tahir.

Ethics approval and consent to participate:

Informed consent was not obtained from participants. The UK Health Security Agency has approval to handle public health surveillance data under Section 251 of the NHS Act 2006 and Regulation 3 of the Health Service (Control of Patient Information) Regulations 2002. This allows UKHSA to process personal confidential data without consent. Sharing of historic laboratory surveillance data with ODNs was approved by the UKHSA Caldicott panel.

Consent for publication:

Not applicable.

Availability of data and materials:

Data are available upon reasonable request. Please contact Ruth Simmons.

Competing interests:

CS has received funding for membership of Advisory Boards, Data Safety and Monitoring Panels and for the preparation of educational materials from Gilead Sciences, ViiV Healthcare, Janssen-Cilag and MSD. All other authors declare no competing risks.

Funding:

The research was funded by the National Institute for Health Research Health Protection Research Unit (NIHR HPRU) in Blood Borne and Sexually Transmitted Infections at University College London in partnership with UK HSA. The views expressed are those of the authors and not necessarily those of the NIHR, the Department of Health and Social Care or UKHSA.

Authors’ contributions:

The study was conceived by SM and RS. SM led the planning and implementation of the re-engagement exercise and the evaluation approach. RS conducted data processing and linkage and prepared the ODN lists. GRF supported planning and helped manage the ODNs response to the exercise. DE conducted the analyses and drafted the manuscript with input from all authors. All the authors approved the final manuscript.

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Only 258 (4%) of individuals reported as PCR negative had evidence of treatment in the NHSE registry [19 (7.3%) 2017 or earlier, 156 (60.5%) in 2018 and 83 (32.2) missing].

Competing interest reported. CS has received funding for membership of Advisory Boards, Data Safety and Monitoring Panels and for the preparation of educational materials from Gilead Sciences, ViiV Healthcare, Janssen-Cilag and MSD. All other authors declare no competing risks.

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Results from a retrospective case finding and re-engagement exercise for people previously diagnosed with hepatitis C virus to increase uptake of directly acting antiviral treatment

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Abstract

Background

Methods

Results

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Background

Methods

Laboratory surveillance data:

Data processing and linkage to generate patient lists:

Implementation:

Evaluation:

Data analysis:

Ethics:

Results

Re-engagement lists provided to ODNs:

Demographic characteristics of patients on lists provided to ODNs:

Reporting by ODNs:

Process indicators:

Re-engagement outcomes:

All ODNs:

ODNs that returned data:

ODNs that did not return data:

Unknown outcomes:

All ODNs:

Only ODNs that returned data:

Mortality:

Discussion

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