Tag: intervention

Erasing the stain: Challenging the stigma of opioid substitution treatment. Findings from a stakeholder workshop

Posted on by lindsey.pike

Author: Vicky Carlisle. Twitter: @Vic_Carlisle, Email: vicky.carlisle@bristol.ac.uk

On Wednesday 7th July 2021, I brought together key stakeholders with an interest in improving opioid substitution treatment (OST) from across the UK. This included people with lived experience, Public Health England staff, local authority public health practitioners, treatment service leads, pharmacists and academics. We discussed the findings of my recently completed PhD, and together we considered the next stages of developing an intervention to improve OST.

A summary of my research

For those not familiar with the topic, OST refers to the treatment of opioid dependency with either methadone or buprenorphine (alongside psychosocial support). Through my research, I wanted to understand what the key facilitators and barriers are to people ‘recovering’ in OST. To do this, I drew on both quantitative and qualitative methodologies. I found that loneliness, isolation and experiences of trauma and stigma were key barriers to recovery; whereas positive social support, discovering a sense of purpose and continuity of care were valuable facilitators.

Importantly, some factors appear to act as both facilitators and barriers to recovery in OST. For instance, I found that some service users used isolation as a form of self-protection (to shield themselves from negative influences), however this often left them feeling lonely and disconnected from the potential benefits offered by developing more positive social support networks.

Undoubtedly, the strongest barrier to recovery was stigma. Service users told me that they experience stigma from a range of sources, including from family and friends, healthcare professionals and members of the wider community. I found similar patterns in the literature review that I carried out (Carlisle et al, 2020). Stigma is like a stain where an individuals’ entire identity is defined by a single, negative attribute. In the case of OST, individuals may possess overlapping stigmatised identities of ‘OST service user’, ‘drug user’ and ‘injecting drug user’. Some will be further stigmatised due to experiencing homelessness, being HIV or Hepatitis C positive or through involvement in sex-work.

“I found that loneliness, isolation and experiences of trauma and stigma were key barriers to recovery”

Community pharmacies are one environment where service users report experiencing a great deal of stigma. Unlike customers collecting other prescriptions, many OST service users receive their medications (methadone/buprenorphine) through an arrangement known as ‘supervised consumption’. This means they must be observed taking their medication by a pharmacist to ensure that it is not diverted to others. This is often conducted in full view of other customers, despite guidelines which recommend that this takes place in a private room or screened area. This leaves OST service users open to the scrutiny of the ‘public gaze’.

My findings have several implications in relation to stigma. Firstly, OST service users receive poorer care than other members of society in healthcare settings, which may result in them avoiding seeking help from drug treatment and for other health conditions. Secondly, stigmatising OST service users makes community re-integration extremely challenging and this has been directly linked to individuals returning to drug using networks as it is somewhere they feel a sense of belonging. The ultimate impact of being repeatedly exposed to stigma is an internalisation of these judgements, resulting in feelings of shame and worthlessness – again impacting on individuals’ ability to seek help and develop supportive new relationships with others.

Figure 1: Key facilitators and barriers to recovery, retention and completion in OST at each level of the socioecological model. Stigma is present at every level of the system.

What we discussed during the workshop

Being able to present these findings to key stakeholders was a real highlight of my PhD work; it’s not often that you have the ear of so many invested and engaged individuals in one ‘room’ (albeit a Zoom room!). The findings of my PhD chimed closely with the experiences of those in the room and would be further reflected the next day when Dame Carol Black’s Review of Drugs Part 2 was published, which made specific reference to stigma.

After I presented a short overview of my PhD findings, attendees spent time in small groups discussing how we might address OST stigma at each level of the socioecological system (see figure 1, above). A common thread that ran through each of the groups’ discussions was the importance of embedding interventions within trauma-informed frameworks. Attendees felt that increasing others’ understanding of the impact of trauma and ‘adverse childhood experiences’ (ACEs) may be a key mechanism by which to reduce stigma towards OST service users.

Indeed, a recent study found promising results in relation to this – that increasing the public’s awareness of the role of ACEs in substance use reduced stigmatising attitudes towards people who use drugs (Sumnall et al, 2021). Workshop attendees suggested that this outcome could be achieved through trauma-informed training of all individuals who might work with OST service users, such as pharmacists, the police and medical professionals, as well as those who work in healthcare settings, such as receptionists.

At the individual level there was a discussion about the way that stigma trickles down the socioecological system, resulting in self-stigma or internalised stigma. People felt that the best way to reduce this was to tackle stigma higher upstream first.

When thinking about reducing stigma in everyday inter-personal interactions, people highlighted the importance of using non-stigmatising language. For those who are interested (and I think we all should be!) the Scottish Drug Forum has published an excellent guide here.

Some excellent suggestions were made for reducing stigma that individuals experience in organisations such as pharmacies, hospitals and other settings. This is something that Dr Jenny Scott and I discussed in a recent article for the Pharmaceutical Journal (Scott & Carlisle, 2021). One attendee suggested the introduction of positive role-models within organisations who could be an exemplar of positive behaviour for others (a ‘stigma champion’ perhaps?). Training was identified as a key mechanism through which stigma could be reduced in organisations, including through exposure to people who use drugs (PWUD) and OST service users during training programmes. It was stressed however, that this should be carefully managed to ensure that a range of voices are presented and not just ones supporting dominant discourses around abstinence-based recovery.

Suggestions for improving community integration included increasing access to volunteering opportunities – something that people felt has been impacted by reduced funding to recovery services in recent years. It was also suggested that community and faith leaders could be a potential target for education around reducing stigma and understanding the impact of trauma, as these individuals may be best placed to have conversations about stigma with members of their communities.

Finally, there were some thoughtful discussions around the best way to influence policy to reduce stigma. The importance of showing policymakers the evidence-base from previous successful strategies was highlighted. Something that resulted in a lively debate was the issue of supervised consumption with arguments both for and against (this is also relevant at the organisational level). The group summarised that whilst diversion of medications was a risk for some, a blanket approach to supervised consumption and/or daily collections exposes individuals to stigma in the pharmacy, which leaves individuals vulnerable to dropping out of treatment. It was pointed out that supervised consumption policies were quickly relaxed at the start of Covid-19 restrictions – something that appears to have been done safely and with benefits to service users. It was also highlighted that supervised consumption in OST is inherently stigmatising, as users of other addictive drugs with overdose potential, such as other prescribed opioids and benzodiazepines, are not subjected to the same regulations. This sends a clear message to OST service users that they cannot be trusted. Other key suggestions were:

  • Communicating with CQCs and Royal Colleges, who may be particularly interested in understanding how people are treated in their services.
  • Drawing on existing stigma policies from other arenas e.g. mental health.
  • Highlighting the fiscal benefits of reducing stigma to key decision makers.
  • Tapping into plans for the new Police and Crime Commissioners, who have a trauma sub-group.
  • Linking into work with ADDER areas, which may provide the evidence for ‘what works’.

What next?

I am now planning to apply for further funding to develop an intervention to reduce organisational stigma towards OST service users. The involvement of service users and other key stakeholders will be crucial in every step of that process, so I will be putting together a steering group as well as seeking out collaborations with academics internationally that have expertise and an interest in this area. I was really pleased to see that Dame Carol Black’s second report makes some concrete recommendations around reducing stigma towards people who use drugs. I hope therefore to be able to work with the current momentum to make OST safer and more attractive to those whose lives depend on it.

I’d like to extend my gratitude to all of the attendees at the workshop and to Bristol’s Drug and Alcohol Health Integration Team (HIT) for supporting this event. If you are an individual with lived experience of OST, an academic, or any other stakeholder working in this area and would like to be involved with future developments, please get in touch with me at vicky.carlisle@bristol.ac.uk or find me on Twitter at @Vic_Carlisle.

References

Carlisle, V., Maynard, O., Padmanathan, P., Hickman, M., Thomas, K. H., & Kesten, J. (2020, September 7). Factors influencing recovery in opioid substitution treatment: a systematic review and thematic synthesis. https://doi.org/10.31234/osf.io/f6c3p

Scott, J & Carlisle, V (2021). A pharmacy resolution for 2021: let’s improve the way patients with addiction are treated. The Pharmaceutical Journal. https://pharmaceutical-journal.com/article/opinion/a-pharmacy-resolution-for-2021-lets-improve-the-way-patients-with-addiction-are-treated

Sumnall, H. R., Hamilton, I., Atkinson, A. M., Montgomery, C., & Gage, S. H. (2021). Representation of adverse childhood experiences is associated with lower public stigma towards people who use drugs: an exploratory experimental study. Drugs: Education, Prevention and Policy, 28(3), 227-239. https://doi.org/10.1080/09687637.2020.1820450

This blog was originally posted on the TARG blog on the 1 October 2021.

Do development indicators underlie global variation in the number of young people injecting drugs?

Posted on by lindsey.pike

Dr Lindsey Hines, Sir Henry Wellcome Postdoctoral Fellow in The Centre for Academic Mental Health & the Integrative Epidemiology Unit, University of Bristol

Dr Adam Trickey, Senior Research Associate in Population Health Sciences, University of Bristol

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Injecting drug use is a global issue: around the world an estimated 15.6 million people inject psychoactive drugs. People who inject drugs tend to begin doing so in adolescence, and countries that have larger numbers of adolescents who inject drugs may be at risk of emerging epidemics of blood borne viruses unless they take urgent action. We mapped the global differences in the proportion of adolescents who inject drugs, but found that we may be missing the vital data we need to protect the lives of vulnerable young people. If we want to prevent HIV, hepatitis C, and overdose from sweeping through a new generation of adolescents we urgently need many countries to scale up harm reduction interventions, and to collect accurate which can inform public health and policy.

People who inject drugs are engaging in a behaviour that can expose them to multiple health risks such as addiction, blood-borne viruses, and overdose, and are often stigmatised. New generations of young people are still starting to inject drugs, and young people who inject drugs are often part of other vulnerable groups.

Much of the research into the causes of injecting drug use focuses on individual factors, but we wanted to explore the effect of global development on youth injecting. A recent systematic review showed wide country-level variation in the number of young people who comprise the population of people who inject drugs. By considering variation in countries, we hoped to be able to inform prevention and intervention efforts.

It’s important to note that effective interventions can reduce the harms of injecting drug use. Harm reduction programmes provide clean needles and syringes to reduce transmission of blood borne viruses. Opiate substitution therapy seeks to tackle the physical dependence on opiates that maintains injecting behaviour and has been shown to improve health outcomes.

What we did

Through a global systematic review and meta-analysis we aimed to find data on injecting drug use in published studies, public health and policy documents from every country. We used these data to estimate the global percentage of people who inject drugs that are aged 15-25 years old, and also estimated this for each region and country. We wanted to understand what might underlie variation in the number of young people in populations of people who inject drugs, and so we used data from the World Bank to identify markers of a country’s wealth, equality, and development.

What we found

Our study estimated that, globally, around a quarter of people who inject drugs are adolescents and young adults. Applied to the global population, we can estimate approximately 3·9 million young people inject drugs. As a global average, people start injecting drugs at 23 years old.

Estimated percentage of young people amongst those who inject drugs in each country

We found huge variation in the percentage of young people in each country’s population of people who inject drugs. Regionally, Eastern Europe had the highest proportion of young people amongst their populations who inject drugs, and the Middle Eastern and North African region had the lowest. In both Russia and the Philippines, over 50% of the people who inject drugs were aged 25 or under, and the average age of the populations of people who inject drugs was amongst the lowest observed.

Average age of the population of people who inject drugs in each country

In relation to global development indicators, people who inject drugs were younger in countries with lower wealth (indicated through Gross Domestic Product per capita) had been injecting drugs for a shorter time period. In rapidly urbanising countries (indicated through urbanisation growth rate) people were likely to start injecting drugs at later ages than people in countries with a slower current rate of urbanisation. We didn’t find any relationships between the age of people who inject drugs and a country’s youth unemployment, economic equality, or level provision of opiate substitution therapy.

However, many countries were missing data on injecting age and behaviours, or injecting drug use in general, which could affect these results.

What this means

1. The epidemic of injecting drug use is being maintained over time.

A large percentage of people who inject drugs are adolescents, meaning that a new generation are being exposed to the risks of injecting – and we found that this risk was especially high in less wealthy countries.

2. We need to scale up access to harm reduction interventions

There are highly punitive policies towards drug use in the countries with the largest numbers of young people in their populations of people who inject drugs. Since 2016, thousands of people who use drugs in the Philippines have died at the hands of the police. In contrast, Portugal has adopted a public health approach to drug use and addiction for decades, taking the radical step of taking people caught with drugs or personal use into addiction services rather than prisons. The rate of drug-related deaths and HIV infections in Portugal has since plummeted, as has the overall rate of drug use amongst young people: our data show that Portugal has a high average age for its population of people who inject drugs. If we do not want HIV, hepatitis C, and drug overdoses to sweep through a new generation of adolescents, we urgently need to see more countries adopting the approach pioneered by Portugal, and scaling up access to harm reduction interventions to the levels recommended by the WHO.

3. We need to think about population health, and especially mental health, alongside urban development.

Global development appears to be linked to injecting drug use, and the results suggest that countries with higher urbanisation growth are seeing new, older populations beginning to inject drugs. It may be that changes in environment are providing opportunities for injecting drug use that people hadn’t previously had. It’s estimated that almost 70% of the global population will live in urban areas by 2050, with most of this growth driven by low and middle-income countries.

4. We need to collect accurate data

Despite the health risks of injecting drug use, and the urgent need to reduce risks for new generations, our study has revealed a paucity of data monitoring this behaviour. Most concerning, we know the least about youth injecting drug use in low- and middle-income countries: areas likely to have the highest numbers of young people in their populations of people who inject drugs. Due to the stigma and the illicit nature of injecting drug use it is often under-studied, but by failing to collect accurate data to inform public health and policy we are risking the lives of vulnerable young people.

Contact the researchers

Lindsey.hines@bristol.ac.uk

Lindsey is funded by the Wellcome Trust.

stopWatch – a smartwatch system that could help people quit smoking

Posted on by lindsey.pike

Dr Andy Skinner and Chris Stone

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October sees the return of Stoptober, a Public Health England initiative to encourage smokers to quit. Campaigns like this and many others have been effective in reducing smoking in the UK over a number of decades. However, on average, about 15% of the UK’s population still smoke, and this costs the NHS more than £2.5bn each year.

To help address this, the NHS Long Term Plan has identified a range of measures to encourage healthier behaviours, including the need to speed up the introduction of innovative new health interventions based on digital technologies.

Here in the MRC IEU we’ve been working on a new wearable system that could help people stop smoking; stopWatch is a smartwatch-based system that automatically detects cigarette smoking. Because the system can detect when someone is smoking a cigarette, it can trigger the delivery of interventions to help that person quit smoking at precisely the time the interventions will be most effective.

Hand and wrist wearing stopWatch and holding a cigarette
The stopWatch could help people to stop smoking

What is stopWatch, and how does it work?

stopWatch is an application that runs on a commercially available Android smartwatch. Smartwatches now come equipped with motion sensors, just like the ones in smartphones that measure step counts and activity levels. As smartwatches are attached to the wrist, the motion sensors in a smartwatch can tell us how a person’s hand is moving. stopWatch takes data from the smartwatch’s motion sensors and applies machine learning methods to look for the particular pattern of hand movements that are unique to smoking a cigarette.

How can we use stopWatch to help people quit smoking?

It’s estimated about a third of UK smokers try to stop each year, but only a fifth of those that try manage to succeed. For most smokers an attempt to stop smoking ends with a lapse (having just one cigarette), that can quickly lead to a full relapse to smoking. As stopWatch can detect the exact moment a smoker lapses and has a cigarette, it can trigger the precise delivery of an intervention aimed specifically at helping prevent the lapse turning into a full relapse back to smoking.

Will the intervention work?

A recent article highlighted the potential for using mobile and wearable technologies, like stopWatch, to deliver these kinds of ‘just-in-time’ interventions for smoking. To develop our smoking relapse intervention we will be using the person-based approach, which has an excellent track record of delivering effective health behaviour change interventions. We will also be engaging the highly interdisciplinary cohort of PhD students in the new EPSRC Center for Doctoral Training in Digital Health and care, which brings together students with backgrounds in health, computer science, design and engineering.

However, that same article also pointed out that these types of intervention are still new, and that there has been little formal evaluation of them so far. So we don’t yet know how effective these will be, and it’s important interventions of this kind are subject to a thorough evaluation.

We will be working closely with colleagues in NIHR’s Applied Research Collaboration (ARC) West and Bristol Biomedical Research Centre who have expertise in developing, and importantly, evaluating interventions. We will also be working with the CRUK-funded Integrative Cancer Epidemiology Unit at the University of Bristol, collaborating with researchers who have detailed knowledge of developing interventions for specific patient groups.

The StopWatch display
On average, stopWatch detected 71% of cigarettes smoked and of the events stopWatch thought were cigarette smoking, 86% were actually cigarette smoking.

How good is stopWatch at detecting cigarette smoking?

In any system designed to recognise behaviours there is a trade-off between performance and cost/complexity. Other systems that use wearables to detect smoking are available, but these require the wearable be paired with a smartphone and need a data connection to a cloud-based platform in order to work properly. stopWatch is different in that it runs entirely on a smartwatch. It doesn’t need to be paired with a smartphone, and doesn’t need a data connection. This makes it cheaper and simpler than the other systems, but this also means its performance isn’t quite as good.

We recently validated the performance of stopWatch by asking thirteen participants to use stopWatch for a day as they went about their normal lives. On average, stopWatch detected 71% of cigarettes smoked (the system’s sensitivity), and of the events stopWatch thought were cigarette smoking, 86% were actually cigarette smoking (its specificity). This compares with a sensitivity of 82% and specificity of 97% for the systems that require smartphones and data networks.

When will stopWatch and the smoking relapse intervention be available and what will they cost?

The stopWatch system itself is available for research purposes to academic partners now, free of charge. We’re open to discussions with potential commercial partners – please get in touch if you’d like to discuss this (contact details below).

We aim to begin work on the smoking relapse intervention based on stopWatch next year, and we expect development and evaluation to take between 18 and 24 months. The cost of the intervention has yet to be determined. That will depend on many factors, including the partnerships we form to take the intervention forward.

What’s next?

We’re currently putting stopWatch through its paces in some tough testing in occupational settings. This will stress the system so that we can identify any weaknesses, find out to how to improve the system, and develop recommendations for optimising the use of stopWatch in future studies and interventions.

We’re also developing a new smartwatch-based system for the low burden collection of self-report data called ‘dataWatch’. This is currently undergoing feasibility testing in the Children of the 90s study.

Contact the researchers

Dr Andy Skinner Andy.Skinner@bristol.ac.uk 

Can lifestyle changes prevent prostate cancer or delay the need for treatment?

Posted on by lindsey.pike

This men’s health week, National Institute for Health Research Biomedical Research Centre and Integrative Cancer Epidemiology Programme PhD student Meda Sandu outlines findings from research on how we can best prevent and treat prostate cancer.

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Prostate cancer (PCA) is the second most common cancer in the adult population in the UK, with over 47, 000 new cases being diagnosed each year.  Over 400, 000 people assigned male at birth live with or after a diagnosis of PCA. Localised PCA is cancer that is confined in the prostate gland and has not spread to other organs. Localised PCA often grows slowly, may not give any symptoms and/or require treatment. However, occasionally this type of cancer is aggressive in nature, can spread fast and will require treatment. Patients who undergo radical treatment, such as surgery and radiotherapy, often report side effects which significantly impact their wellbeing and enjoyment of life, such as urinary and bowel incontinence, low libido, erectile dysfunction, fatigue, mood swings. Our research looks at lifestyle interventions that may help prevent PCA, as well as identifying cases when treatment may be delayed,  in an attempt to best support outcomes for people with PCA.

Image by pixel2013 from Pixabay

How does treatment choice affect survival?

In the ProtecT study people were randomised to various treatments or active surveillance where no treatment is given but the patient is regularly followed-up. The study found similar chances of surviving localised PCA, with those in the active surveillance group only having a very small decrease in survival compared to the other groups. This prompted a spur of research in identifying modifiable factors which could delay PCA progression and therefore avoid unnecessary treatment.

One of the aims of our research is to look at dietary and lifestyle changes that are acceptable and achievable to PCA patients, which could reduce PCA risk and progression. These could prevent PCA or, for those who have already been diagnosed with localised disease, delay treatment and therefore avoid the associated side effects.

Dietary and physical activity interventions in people with PCA

In the PrEvENT  feasibility randomised controlled trial, patients who underwent prostate removal surgery were randomly assigned to both a dietary and a physical activity intervention. The dietary intervention consisted of either:

  • a lycopene supplement, which is an antioxidant found in tomatoes and has been previously be suggested to be protective for PCA
  • eating 5 portions of fruit and vegetable per day and replacing dairy milk with a vegan option (soy, almond, oat, coconut etc)
  • continue as normal.

The physical activity intervention asked participants to do 30 minutes of brisk walking five times a week.

Image by PublicDomainArchive from Pixabay

For each intervention, we looked at the change in metabolites, which are very small molecules found in blood that reflect metabolic patterns, a very useful measure in diseases where there are metabolic changes, such as cancer.  We found that eating more fruit and vegetables and decreasing dairy changed blood metabolite levels. Of particular interest was the change in pyruvate levels, a metabolite used as fuel in the pathway of cancer cell proliferation. This suggests that our interventions could lead to less energy being available to the proliferation of cancerous cells, which could lead to lower PCA risk and progression.

Can we predict which PCA cases do not need treatment?

A second aim of my research is to identify blood markers that can help distinguish disease that is unlikely to cause problems from aggressive disease that will advance rapidly and require treatment. We looked at the ProtecT trial and provisionally identified metabolites that could help predict PCA progression. This would allow clinicians to more accurately decide if the patient should take up treatment or if active surveillance would be appropriate.

Patients diagnosed with localised PCA have 96% chance of surviving 15 years after diagnosis.  However, PCA risk factors have yet to be conclusively identified. In addition, the diagnosing techniques are invasive and there is uncertainty around which localised cases are likely to advance. More research is therefore needed to establish potential risk factors which could help prevent PCA, and blood-based markers that could predict the aggressiveness of localised PCA cases. We are also looking at the relationship between PCA risk and progression and blood DNA methylation markers, which allow cells to control the expression of genes and have previously been suggested to be responsive to both environmental factors and causes of cancer and could help us better understand the aetiology of PCA.

So what does this mean for people with prostate cancer?

Although more research is required as our studies were small and did not aim to have definitive answers,  we did find some evidence to suggest that some lifestyle changes, namely increased fruit and vegetable consumption and replacing milk with non-dairy options and walking 30 minutes a day, 5 times a week are acceptable to PCA patients and that these interventions may have promising effects on blood metabolites. Identifying lifestyle factors which may have a protective role could help prevent PCA cases. Our research also identified metabolites which may help predict the aggressiveness of PCA which could help patients diagnosed with localised PCA avoid serious side effects by not undertaking unnecessary treatment.

Further reading and resources

Find out more about prostate cancer

Find out more about the treatments available for prostate cancer

Journal paper: Hamdy et al (2016) 10 year outcomes after monitoring, surgery, or radiotherapy for localised prostate cancer (the ProtecT trial)

Journal paper: Hackshaw-McGeagh et al (2016) Prostate cancer – evidence of exercise and nutrition trial (PrEvENT): study protocol for a randomised controlled feasibility trial.

 

 

The MRC Integrative Epidemiology Unit at the University of Bristol (IEU) conducts some of the UK's most advanced population health science research. It uses genetics, population data and experimental interventions to look for the underlying causes of chronic disease.