Journals LibraryNHS NIHR - National Institute for Health Research
Understanding patients’ experiences of medicine use in depression & development of a new section on www.healthtalk.org
Understanding patients’ experiences of medicine use in depression & development of a new section on www.healthtalk.org
31 July 2013
01 May 2012
31 July 2013
Qualitative research; narrative interviews; depression; medicines; e-health; anti-depressants; healthtalk
- Professor Sue Ziebland, Nuffield Department of Primary Care Health Sciences, University of Oxford
- Professor Claire Anderson, School of Pharmacy, University of Nottingham
- Professor Tony Avery, School of Medicine, University of Nottingham
- Susan Kirkpatrick, Nuffield Department of Primary Care Health Sciences, University of Oxford – project researcher
- Dr Andrew Herxheimer, trustee, DIPEx charity (which publishes HealthTalk.org)
- Luís Carrasqueiro, Chief Executive, DIPEx charity
The aim is to improve professional and public understanding of what it is like to use medicines for treating depression. The research will benefit from, and build on, two existing projects on experiences of depression conducted by the Health Experiences Research Group in the University of Oxford. These studies – of depression in adults and depression in young people aged 16-25 years of age – have already identified several issues around taking medicines, adverse effects and withdrawal effects and combining medicines with talking therapies. The project will benefit from a recent secondary analysis of the two collections of HERG depression interviews (n=80) carried out at University of Nottingham.
The research will:
- Use narrative interviews to further explore patients’ experiences of using antidepressants as prescription and OTC medicines in the context of their family, work and social lives.
- Identify patients’ information and support needs and their perspectives on other issues about taking the medicines to treat depression, including pharmaceutical issues eg type of formulation and clinical issues like adverse events.
- Clarify what type of information people want to find after being prescribed a medicine for treating depression and the kinds of problems faced.
- Disseminate the results, illustrated with video and audio interview clips, via a new Healthtalk section to improve public and professional understanding of patients’ experiences of medicines in depression.
Changes to project objectives
Prescribing of antidepressants has doubled over the last ten years. Across England 53 million prescriptions were dispensed for antidepressants in 2013 at a cost of over £280 million (1). The World Health Organisation predicts that by 2020, depression will be the second leading cause of disability throughout the world. It is known that on average 50% of all medicines are not taken as prescribed. This is due to a complex array of factors including lack of information, poor communication, patients' health beliefs and side effects. There is currently little patient focussed information regarding peoples' experiences of using antidepressants. The main reason why people do not take their medicines as prescribed is because of concerns patients have about the medicines and their effects. It is clear from the literature that people need support and information about the therapeutic and side effects of antidepressants as well as how to take them.
Problems occur at all stages of the medicines use process: prescribing, dispensing, administering, monitoring and seeking help. This is usually due to inadequate communication, knowledge gaps and errors. Avery, Anderson et al (2) noted a large number of highly descriptive patient reports about antidepressants in their recent HTA study of patient reporting of adverse drug reactions. Furthermore many patients who are taking antidepressants have co-morbidities and are often on complex treatment regimes, yet depressed patients appear less likely than others to take any form of medicine reliably, not just their antidepressants (3). A recent qualitative secondary analysis of 80 interviews from the Health Experiences Research Group (HERG) in Oxford about experiences of depression suggests that adverse events with antidepressants can affect patients' satisfaction with treatment and hence treatment outcome. While participants perceived significant benefits from medicines use, they also expressed apprehension and uncertainty about taking them long-term. It appeared that such apprehension was somehow balanced by attitudes and behaviours supporting continuation, but both positive and negative experiences with medicines use, including prescriber support and information, appear to have significant impact on whether they continue to take them (4).
- Avery AJ, Anderson C, Bond CM, Fortnum H, Gifford A, Hannaford P et al. Evaluation of patient reporting of adverse drug reactions to the UK ‘Yellow Card’. Health Technology Assessment, 15 (20) 2011
- Haynes RB, Ackloo E, Sahota N, McDonald HP, Yao X. Interventions for enhancing medicines adherence. Cochrane Database of Systematic Reviews, 2008
- Anderson C, Roy T. Patient Experiences of taking antidepressants for depression; a secondary qualitative analysis. Res. Social Adm Pharm, 2013
Aims and Objectives
The 80 original interviews focused on the experience of depression, rather than on medicines use - the aim of the current study was to provide a new collection of interviews focusing specifically on use of antidepressants, in order to further explore the issues identified above and other emergent issues regarding medicine use in depression. It was anticipated that the study would have direct and indirect benefits for patients, carers and health care practitioners. In particular, interviews were collected with a view to constructing a new area on the award winning website www.healthtalk.org which already includes more than 75 health conditions and receives over 5 million hits a month. Each new, condition specific, section of the site includes 250 video, audio and written clips from the interviews, summaries of 25-30 of the topics that are identified as being important to people, and links to other resources.
This aim of this new section of healthtalk was to provide practical support to people who had recently started taking antidepressants, as well as for people who had experienced previous episodes of depression. The website will also be available for developing teaching and learning resources to help health care professional’s advice and inform people about using antidepressants, and to provide a patient-centred perspective to researchers, managers and those who commission health services. The healthtalk website includes a dedicated teaching and learning section for use as a resource by the many health professionals who use the material in teaching about patient’s perspectives.
In-depth interviews with a maximum variation sample across the UK (n=36) who were using/had recently used antidepressants. Interviews were video or audio-recorded and analysed systematically with the help of computer software. Topics included
- An exploration of patients’ experiences of using antidepressants and OTC medicines in the context of family, work and social lives.
- Information and support needs and peoples perspectives on other issues about taking or being prescribed medicines for depression, including pharmaceutical issues e.g. type of formulation and clinical issues like adverse events.
- Accounts of interactions with health professionals.
- Views about recovery and hopes for the future.
An advisory panel was set up to include lay people (with experience of depression and using antidepressants), representatives from voluntary groups, researchers, clinicians and pharmacists, health professionals in training and members of the project team. The panel members were
Sue Ziebland, Chair
Director, Health Experiences Research Group.
Professor of Social Pharmacy, University of Nottingham
Professor of Primary Health Care, University of Nottingham
Trustee of DIPEx Charity, Clinical pharmacologist,
Emeritus Fellow, UK Cochrane Centre
Interim Director of Health Experiences Institute, University of Oxford
Senior Clinical Research Fellow and Professor of Epidemiological Psychiatry, University of Oxford.
Senior Lecturer, University of Bath
President, College of Mental Health Pharmacy
Interview participant and lay panel member
Lay panel member
PhD student and voluntary mental health worker
NIHR Research Fellow, University of Bristol
Director, Oxfordshire MIND
Head of Research, Mental Health Foundation
Community Psychiatric Nurse (CPN), Oxfordshire Mental Health Trust.
Independent Healthcare Consultant
Member, NICE Quality Standards Advisory Committee
Strategist, Political aide, Time to Change ambassador
Mark Rice Oxley
International News Editor at The Guardian
Author of 'Underneath the Lemon Tree', a memoir of depression and recovery
The group met the start of the project to advise on the parameters of the project, including the sample and recruitment of participants. They were also asked to contribute to quality assurance of the website material by reviewing final 31 topic summaries, in particular to ensure that they were written in an accessible format, and that the content was factually accurate.
Interviews were conducted with 36 people (23 female, 13 male, aged range 22-84, ethnically diverse) from across the UK. The sampling strategy aimed to include the widest practical range of experiences of taking medicines for depression. Participants included first time users of antidepressants, people who had had recurrent episodes of depression and who had used them several times, and long term users. Recruitment was through support groups, clinicians, public advertising, social network sites, pharmacists and through contacts suggested by members of the advisory panel. Potential participants were provided with an information sheet and the opportunity to discuss any concerns or questions with the lead researcher before agreeing to take part.
Qualitative semi-structured video or audio (where patient did not consent for video) digitally recorded interviews were conducted in the home setting (or a place convenient to the participants) by HERG researcher Susan Kirkpatrick who has experience of conducting research on sensitive health related topics. A topic guide was developed to elicit narratives about participants’ experiences of using medicines to treat depression and to explore their understanding of depression, their attitudes to medicines and decision-making about treatment. Areas discussed included adverse reactions, their response to having to take antidepressants, pharmaceutical issues, telling family and friends, communication with health professionals (particularly prescribers and pharmacists), financial impact, integration with talking therapies, information and support needs and use of over the counter medicines such as St John’s Wort and other approaches using complementary medicines. The interviews lasted between one and three hours.
After the interview participants were sent a fully transcribed copy of the interview and given the opportunity to remove any sections from the interview that on reflection they would not wish to be included for use on the website. A two stage consent process involved initially giving consent to take part in the interview, and subsequently, after reviewing the interview transcript, giving copyright consent for use of the material on the internet and for teaching and learning purposes.
Analysis & preparation for website delivery
Interview transcripts were analysed by the qualitative researcher responsible for the data collection in collaboration with a research ‘buddy’ (Claire Anderson, supported by Sue Ziebland) who read the interview transcripts and coding summaries to ensure that the analysis covered the full range of experiences that participants described. The textual data were analysed thematically using the method of constant comparison and the NVivo software package. This analysis was used to produce 31 summaries of topics for the website which reflected the most important themes and represented the full range of experiences included in the interviews. The summaries also included evidence-based information and links to questions and answers to clarify any misunderstandings about depression and its treatment. In order to ensure the quality and balance of the material included in the site each topic summary prepared by the researcher was also checked by a second researcher and reviewed by at least one member of the advisory panel.
The material was prepared for presentation on the healthtalk website after the topic summaries had been written and prepared by the researchers, along with selected clips from the audio and video interviews. The new section of the website went ‘live’ online in November 2013. A formal launch event took place at the Royal Society in London at the end of November. This was attended by around 100 invited guests including practicing clinicians, pharmacists, researchers, journalists, representatives from voluntary organisations and support groups, and other interested parties. Advisory panel members Alastair Campbell and Mark Rice Oxley both presented and DIPEx patron, actor Hugh Grant also attended (and tweeted about the event).
The interviews elicited a wide range of feelings about using antidepressants. Many participants expressed uncertainties about; how long an antidepressant might take to begin to take effect; how far it might help; what to expect in the first few weeks; about side effects and how to deal with them; about changing or stopping taking antidepressant medicines; about talking to others about depression and using medication for depression; about the amount of information they had been given; and about their interactions with health professionals – both positive and negative. Where people felt they hadn’t been told enough about what to expect the uncertainty could be unsettling. Some people felt frustrated that there seemed to be no ‘hard and fast’ rules, and that evidence about the effectiveness of antidepressants was ambiguous. Some disliked how antidepressants made them feel, even if symptoms had improved. Some people said antidepressants made them feel worse, or that they had never found one that worked. Commonly people said that antidepressants could help, but that it had been a combination of medication and talking therapies that had been most helpful for recovery. Many of the participants wanted to stop taking antidepressants after a time, but some had become resigned to the possibility of taking them on a long term basis in order to keep their mood stable.
List of topics on the Healthtalk medicines in depression site
- Getting to the doctor – seeking help for depression
- Being prescribed an antidepressant
- Deciding to take an antidepressant
- Starting to take an antidepressant for the first time
- Expectations of the medicine
- The Patient Information Leaflet
- SSRI (Selective Serotonin Reuptake Inhibitor)
- Using an antidepressant – tricyclics (TCAs)
- Other groups of antidepressants
- Coping with side effects
- Symptom of illness or side effect?
- Taking other medicines with antidepressants
- Treatment in hospital
- Managing medicines
- Reviewing medicine use
- Managing other illnesses - taking an antidepressant with other medicines
- Stopping taking medicines
- Changing medicines
- Talking therapies and medicines
- Finding more information about antidepressants
- Feelings about using an antidepressant
- In the workplace – talking about taking an antidepressant
- Talking to others about antidepressants – family, friends and social life
- Non medicinal strategies for wellbeing
- Experiences with health professionals - the GP
- Experiences with health professionals - the psychiatrist
- Experiences with health professionals - the Pharmacist
- Experiences with health professionals - the Community Mental Health Team (CMHT)
- Messages to others
- Messages for health professionals
To improve patients’ own understanding of the use of antidepressants. To improve health professionals understanding of what matters to patients when they are prescribed an antidepressant in order to improve practice.To highlight what constitutes ‘good practice’. To provide new resources for teaching health professionals about mental health issues generally, and more specifically about appropriate support for patients taking antidepressants.
The study suggests that people need to feel supported by health professionals when they first start taking antidepressants, when they change to a new medicine, when they stop taking them, or over a longer term if they are taking them to maintain their equilibrium. Some people struggle with the idea of taking antidepressants; health professionals can help by recognising the reluctance people feel to taking anti-depressants, talking through the options and offering information and support. It is important for patients taking antidepressants to maintain links with the GP whilst taking antidepressants through regular review appointments, arranged by the doctor. Patients often want more than a prescription when they are diagnosed with depression; relatively small gestures and kindnesses can help people to feel cared about. People appreciated being told about the variety of medicines and other strategies that might be available to help with mental health problems - including talking therapies, advice on lifestyle changes that might help, and website addresses and organisations that provide reliable and accurate information. Use of the internet for information about depression and its treatments was routine amongst the people we interviewed.
Plain English summary
It is well known that many people do not take their medicines as prescribed and that much illness and many hospital admissions are due to inappropriate use of both prescribed and over the counter medicines and to the side effects of medicines. The side effects of antidepressant medicines are well known and can cause considerable worry to patients. We interviewed a sample of 36 patients who have used various prescription and non-prescription medicines for depression, to explore their experiences and perspectives on using antidepressants, to identify their information and support needs and to prepare teaching resources for professionals who care for patients with depression.
We identified the issues that mattered to people in their experience of using medicines in depression including their ideas about the causes of their condition, experiences of treatments and side effects, professional attitudes, experience of prescribers, experience of pharmacists, choices, gaps in information and support and experiences of resources designed to meet these needs, issues around taking the medicine, including pharmaceutical issues e.g. type of formulation, clinical issues like side effects and the effects of treatment on social roles.
The study has both direct and indirect benefits for patients, carers and health care practitioners. The interviews have contributed to a new medicines area on the award winningwww.healthtalk.org, which includes more than 85 health conditions. The new section of the HTO site includes over 250 video, audio and written clips from the interviews, summaries of 31 of the topics that are important to people and links to other resources The interviews are also being used to develop teaching and learning resources to help health care professionals to advise and inform people about using medicines to treat depression.
|September 2014||BSA Medical Sociology Conference, Aston University. ‘[My] Dirty Little Secret; The Moral Cosmology of Antidepressant Taking”|
|September 2014||School for Primary Care Research Showcase conference, University of Oxford. ‘I spent a week worrying about it and wondering whether to go ahead and take it’ Deciding to take, or continue with antidepressants. (Poster)|
|September 2014||EACH conference, Amsterdam. ‘I don’t have a problem taking antidepressants but it’s just masking the problem’. What matters to people who are diagnosed with depression?|
|August 2014||International Social Pharmacy Workshop, Boston USA. ‘You may just find that you're fine, but it may make you feel a little bit odd at first.’ People's initial experiences of taking antidepressants|
|July 2014||SW SAPC, University of Bristol. ‘I don’t have a problem taking antidepressants but it’s just masking the problem’. What matters to people who are diagnosed with depression?|
|September 2013||Royal Pharmaceutical Society Conference, Birmingham. ‘I Can Be The Me I Want To Be By Taking an Antidepressant Regularly’: People’s Feelings About Taking|
|July 2013||SAPC 2013 University of Nottingham. What matters to patients when they are prescribed antidepressant medication? (Poster)|
|July 2013||Oxfordshire MIND, Oxford Introducing Healthtalk module on Experiences of Antidepressants|
|March 2013||SW SAPC University of Southampton. What matters to patients when they are prescribed antidepressant medication?|
Keynote invited conference talks
October 2013 People’s experiences of taking antidepressants. Pharmacy Australia Conference, Brisbane, Australia
May 2014, People’s experiences of taking antidepressants. Forbidden City Pharmacy Conference, Beijing , China
March 2015, People’s experiences of taking antidepressants. DUPhAT, Dubai
Launch of new module on healthtalk website
Experiences of Antidepressants; Official launch of the new section of the healthtalk website.
The Royal Society, November 2013
Speakers included: Mark Rice-Oxley (Guardian), Alastair Campbell (novelist/strategist) Claire Anderson (grant holder), Susan Kirkpatrick (lead researcher), Sue Ziebland (HERG research director), Stuart Jessop (research participant)
Selection of press releases and reviews following the launch
The advisory panel included lay people who had experience of using mental health services, and of taking antidepressants. The advisory panel also included two individuals who had written autobiographical literature about experiences of depression and using antidepressants. The lay members of the advisory panel helped with the development of the interview topic guide, provided feedback on recruitment strategies, and provided comments on the topic summaries as they were prepared for the website. A research participant spoke about taking part in the research at the official launch event. Several participants attended the launch event. Others helped to publicise the new addition to the healthtalk website via social networking.
- The new section of the healthtalk website was launched in November 2013 providing additional material for the mental health section of the site. The website scrapbook feature can be used to gather interview clips about a particular aspect of the topic for teaching and learning purposes.
- The new section of the site currently receives an average of 459 visits per month, and has had 9,893 visits since its launch. In December 2014, 4,865 pages were viewed within the section and 600 videos, totalling 13 hours viewing.
- Pages on SSRI (Selective Serotonin Reuptake Inhibitor), starting to take antidepressants for the first time, community mental health teams, feelings about using antidepressants, coping with side effects, taking other medicines with antidepressants and using an antidepressant – tricyclics (TCAs) have been the most popular with users. These pages were visited for an average of around 2 minutes and 40 seconds.
- A number of conference presentations and keynote lectures have been delivered to medical/pharmacy audience both in the UK and at international conferences, and further abstracts have been submitted for 2014 (see list above).
- Peer reviewed papers that will aim to improve practice about prescribing antidepressants and supporting patients with depression are in draft and planning stages. We are submitting papers on commencement of antidepressants and on patient constructions of antidepressant use as barely legitimate.
- Study findings were highlighted by Lord Stone of Blackheath during the House of Lords debate ‘Mental and Physical Health; Parity of Esteem’ which took place on 10th October 2013.
This project was funded by the National Institute for Health Research School for Primary Care Research (project number 154)
Department of Health Disclaimer
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.