recommendations from people with lived experience

Antidepressant prescriptions are on the increase, and this is partially driven by more people staying on them for longer (Kendrick, 2021; Kendrick et al., 2015; McCrea et al., 2016; Moore et al., 2009). While antidepressants can be useful at preventing relapse for many people (Sim et al., 2015), up to half of individuals taking antidepressants long-term are doing so without a guidance-based reason (Ambresin et al., 2015; Eveleigh et al., 2014). This is a problem because antidepressants can come with significant side effects (Kendrick, 2021).

However, whilst many people might like to stop taking antidepressants, doing so can be a challenge. Interviews with patients tell us that one of the biggest barriers to stopping is fear of relapse or withdrawal symptoms, alongside issues such as insufficient coping strategies and lack of support from healthcare professionals (Maund et al., 2019).

In the past, withdrawal symptoms were thought to affect few people and not last very long. However, there’s now evidence that this may not be the case. Some patients have reported withdrawal symptoms lasting for weeks, months, or even years, and research has suggested that almost half of patients who report withdrawal effects, report these symptoms as ‘severe’ (Davies et al., 2019). Reporting antidepressant withdrawal symptoms is additionally complicated because symptoms of withdrawal can feel like symptoms of relapse (e.g., anxiety, suicidal thoughts; Horowitz & Taylor, 2022).

In summary, we know that antidepressant discontinuation might be really hard for some people, and that additional support is needed. But what should this support look like? Read and colleagues (2023) surveyed individuals attending online antidepressant withdrawal support groups for their recommendations.

Many people might like to stop antidepressants but feel unable due to barriers such as fear of relapse or withdrawal and insufficient coping strategies. It is clear that more support is needed.

Methods

Read et al. (2023) conducted an international online survey that specifically recruited people who either:

• Had experience with stopping antidepressants in the past;
• Were currently trying to stop, with the use of an online peer support group to help them;
• Previously tried to stop taking antidepressants in the past, had to go back on them, and were currently looking for support to stop safely through an online peer support group.

The survey itself was mixed methods, but the current study focuses on responses from the prompt: “A public health service to help people come off antidepressants should include …………….”. Content analysis was used to create themes and subthemes from the 708 responses.

Results

Sample characteristics

Most participants were women (81.4%). Participants were from 31 countries, with 21.2% of participants from the UK. Most of the participants were white/Caucasian (92.9%) and had a degree (67.4%).

All respondents had tried to stop or reduce antidepressants, with a third (32.8%) having tried at least twice. Half of the participants (50.8%) were in the process of tapering their antidepressant use.

Most participants (93.5%) reported that their doctor hadn’t told them about the possibility of withdrawal symptoms, and just under half of participants (48.7%) said they felt their antidepressants had helped them.

Main findings

The authors identified 7 themes and 29 subthemes:

1. Prescriber role (n = 349): This theme had 8 subthemes, and largely focused on the attitudes and behaviours needed from clinicians prescribing antidepressants, such as being educated, compassionate, and providing support for withdrawal (e.g., tapering strips).
2. Information (n = 326): This theme had 6 sub-themes and was centred around the need for further information about how to withdraw and withdrawal symptoms. Participants wanted information to be evidence-based, in a written format, patient-based and not from drug companies.
3. Other support/services (n = 283): This theme describes the other forms of support (such as psychological support, peer support and lifestyle changes) participants described. This theme comprised 13 sub-themes.
4. Strong negative feelings re doctors/services etc. (n = 105): This theme illustrates the anger and disillusionment present in many of the responses.
5. Informed consent when prescribed (n = 87): This theme describes how participants wanted more information, particularly about withdrawal, when they were initially prescribed the antidepressant.
6. Drug companies (n = 17): This theme refers to the influence of drug companies and ‘Big Pharma’ in prescribing, and the difficulty that people experienced when trying to come off the antidepressants.
7. Public health campaign (n = 16): This theme focuses on the need for mass education about the side effects and withdrawal symptoms associated with antidepressants.

Online survey respondents described negative experiences of trying to stop their antidepressants and felt that they needed better support and more evidence-based information made available at an earlier point.

Conclusions

The authors conclude that clinicians require education regarding antidepressant withdrawal, and that patients need improved access to different forms of medication (e.g., liquids) to allow for slower tapering. Participants described a sense of anger and ‘loss of faith’ in the medical system after negative experiences of tapering, highlighted the consequences of poor management.

The authors also indicate the need for further support beyond the typical role of the doctor (e.g., counselling, support groups, and support for family and carers), and explain how this extends the literature by providing creative suggestions for improved support, such as residential facilities, information for employers, and services run by individuals with lived experience of withdrawing from antidepressants.

Respondents came up with creative ideas for the kind of support one could offer someone who’s having a difficult time stopping antidepressants, such as residential facilities and peer support.

Strengths and limitations

There are several strengths to this study, including:

• Findings that echo results from previous qualitative studies in this field (e.g., Maund et al. 2019), highlighting that many people have had negative experiences of discontinuing antidepressants and that there is a clear need for support. In particular, fear of withdrawal symptoms (and a lack of knowledge about them) is a big issue for people who want to stop antidepressants, which has important practical implications.
• Findings that extend the existing literature by drawing attention to the anger and disillusionment experienced by people who have had negative experiences when trying to discontinue antidepressants and providing suggestions for alternative methods of support.
• By focusing on those who have had difficult experiences, the paper highlights where there is a need for change, which may help to challenge the misconception that withdrawal symptoms are often brief and mild.

However, there are also some limitations. As the sample were recruited from online support groups, some of the identified themes (e.g., negative experiences, request for more clinician support) may have been more likely, as the participants had already turned to an alternative source for help-seeking. Similarly, the sample may have consisted of a higher proportion of individuals struggling with antidepressant discontinuation, as the inclusion criteria meant that participants had to be having a difficult time discontinuing in order to take part. The authors point out how important it is to capture the views of those who are struggling the most with stopping antidepressants, as these are the individuals most in need of support. This might explain why there is a greater focus on withdrawal symptoms in the current study compared with other research (e.g., Maund et al.’s qualitative meta-synthesis). While focusing on those who are struggling most does not represent all experiences of discontinuation, it allows for a greater, more in-depth understanding of the experiences of those who are really struggling to stop their antidepressants. And these findings highlight the kind of support needed for these people.

Another limitation with the sample is that most participants are white and well-educated. Most research in this area doesn’t include very diverse populations. More research is urgently needed to understand the experiences of people from a range of different backgrounds who may face different barriers to stopping antidepressants and require different kinds of support (Maund et al., 2019; Taylor et al., 2019).

This study focuses heavily on difficult withdrawal symptoms and slower tapering periods, which may be due to the specific sample recruited.

Implications for practice

This research highlights a clear need for change. People want information about withdrawal symptoms at the point that antidepressants are prescribed, meaning they can then make a more informed decision about their treatment. People also want better information about how to go about withdrawing from their antidepressants, and feel that clinicians need to be better informed about withdrawal symptoms and slower tapering. Additionally, there needs to be improved access to different types of medicines to better enable really slow tapering (e.g., liquid formulations), combined with continuous support during all stages of the process. This may be in the form of support groups, or someone who has successfully tapered. This might also include individual psychological therapy and/or support for friends and family.

These findings are useful for GPs and other primary care practitioners who review medication and support discontinuation. They can also be used to inform psychiatric care. Findings like this should be considered, alongside the wider evidence-base, when developing policy and healthcare guidance (e.g. NICE). For example, a working group consisting of politicians, scientists, psychiatrists, and patient representatives have recently recommended withdrawal services such as psychological interventions, social prescribing and a national 24 hour prescribed drug withdrawal helpline/website (Davies et al., 2023).

The REDUCE programme (funded by the National Institute of Health and Care Research) has used the Person-Based Approach (Yardley et al., 2015) to co-produce two digital interventions: one that provides guidance for primary care practitioners, and another (with telephone support) for patients discontinuing antidepressants. These interventions include information and support about withdrawal symptoms, coping strategies, dose reduction schedules, and relapse prevention. The randomised controlled trial recently completed as part of the REDUCE programme will tell us whether this kind of support might be useful for patients and practitioners when discontinuing antidepressants.

Importantly, the findings of Read et al. (2023) highlight that there is a group of people who have had very difficult experiences discontinuing antidepressants. These people are left feeling angry and disillusioned with the medical system. For these people, significant improvements are needed in order to rebuild trust.

It’s really important that we work towards supporting the many people who do have a difficult time stopping, and we need to make sure everyone is given the opportunity and support to stop if that’s what they want to do. Research like this paper can help us do that by exploring the needs of people who are finding stopping so difficult. However, many people don’t try to stop their antidepressants because they are afraid of withdrawal symptoms (Maund et al., 2019). There may be many people who would like to try stopping antidepressants and may be dissuaded from doing so based on reports of negative experiences. So I feel it’s important here to acknowledge that not all experiences are negative. Many people can stop antidepressants with less difficulty – while 56% of people report experiencing withdrawal symptoms, that means 44% do not (Taylor et al., 2019). Ideally (and hopefully in the near future) anyone who wants to stop will have the opportunity to do so, but this is only possible with the provision of adequate support for those who need it.

The current study emphasises a clear need for change in how we approach antidepressant prescription and withdrawal by providing clear information at prescription and offering a greater range of services and medicines to support withdrawal.

Statement of interests

I have previously worked on the NIHR funded REDUCE programme and one co-author of the primary paper (JM) is a co-investigator on this project. This programme of research co-produced a digital intervention for patients and practitioners to support antidepressant discontinuation in primary care, which is closely related to the topic of the primary paper. I have also done some paid consulting on a Canadian online tool to support patients to slowly taper antidepressants and one of the co-authors of the primary paper (MH) also worked on this tool.

Links

Primary paper

Read, J., Lewis, S., Horowitz, M., & Moncrieff, J. (2023). The need for antidepressant withdrawal support services: Recommendations from 708 patients. Psychiatry Research, 326, 115303.

Other references

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