Patient reported Experience and Outcome of Hepatitis C treatment in people who inject drugs or receiving opiate substitution therapy. A peer initiated survey in Denmark.

Author: Demant J, Treloar C, Madden A, Nielsen D, Weis N, Krohn-Dehli L, Tarp B, Øvrehus, A

Theme: Clinical Research Year: 2019

There is limited knowledge about how people with recent injecting drug use or on opiate
substitution therapy(OST) experience access to -and process of Hepatitis C treatment with direct
acting antivirals(DAA). In addition, only a few studies have reported on the patient related outcomes
of hepatitis C treatment in people who inject drugs. Investigating the patient perspective and their
experience with treatment might help identify potential barriers to treatment.
Peer initiated survey. Target population: People on OST or with recent injecting drug use treated
with DAA(past 24 months). Survey was answered on a Likert scale (five options on level of
agreement). The questionnaires included Patient Reported Experiences(PREM)) and Patient
Reported Outcomes(PROM). The PREM and PROM were developed targeting people who inject
drugs by Centre for Social Research in Health, University of New South Wales Survey. The
instruments were translated and adapted according to WHO guidelines. Respondents were recruited
on social media or at follow-up at three hospitals and two OST centers.
Results are preliminary as study is enrolling (target 200 respondents). As of April 1st 2019 28 persons
had initiated and 20 persons completed the full survey. Median age 52 years (IQR 46-58). DAA was
provided at an OST center in 45% of cases.
Selected results PREM: Half the respondents stated side effects from DAA treatment and 35% stated
blood draws as a barrier. Poor understanding or feeling of discrimination from treatment provider
was reported by 20%. PROM: Two thirds of respondents stated more energy and capacity to be with
family and friends after treatment. Half the respondents did not feel confident about avoiding reinfection.
Although very preliminary results, these patient reported measurement instruments developed
shows potential in documenting experience and outcome of DAA treatment as well as barriers and
unresolved issues that needs to be addressed.
Disclosure of Interest Statement:
JD discloses research grants and speaker fees from Abbvie and other support from Abbvie. CT
discloses speaker fees from Abbvie. AØ disclose research grants from Gilead and speaker fees and
other support from Gilead, Abbvie and MSD. AM, DN, NW, LKD and BT has nothing to disclose for this

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