Dr Coral Sirdifield, Dr Susan Y Chipchase, Rebecca Porter, Prof Sara Owen, Prof Niro Siriwardena

1. CaHRU@lincoln.ac.uk Patients’ experiences and perceptions of seeking and using benzodiazepines and z-drugs:A systematic review and meta-synthesis Dr Coral Sirdifield, Dr Susan Y Chipchase, Rebecca Porter, Prof Sara Owen, Prof Niro Siriwardena

2. CaHRU@lincoln.ac.uk Background • Benzodiazepines and z-drugs are used to treat conditions such as insomnia, anxiety and pain • Guidelines suggest that they should only be used short-term • However, research shows that people continue to receive and take them long-term • These drugs have limited long-term benefits, and can have adverse consequences like dependency, daytime sedation and increased rates of falls

3. CaHRU@lincoln.ac.uk Aim • To synthesise findings from qualitative studies of patients’ experiences and perceptions of seeking and receiving benzodiazepines and z-drugs in order to: • Explore factors that perpetuate use of these drugs from a patient perspective, and • Identify possible strategies for achieving safer prescribing

4. CaHRU@lincoln.ac.uk Methods • Systematic review: MEDLINE, CINAHL, Social Science Citation Index, Science Citation Index, PsycINFO, and AMED • Inclusion criteria: • Relevant qualitative journal articles from studies of patient experiences • Published in a European language between January 2000 and April 2014 • Conducted in Europe, the United States, Australia or New Zealand • Also searched the reference lists of included studies

5. Methods continued • Data extraction: done independently by 3 researchers using a form created for the study • Study quality: assessed by the same team using the Critical Appraisal Skills Programme qualitative checklist (CASP) • Synthesis: thematic synthesis (Thomas and Harden, 2008) Thomas, J., and Harden, A. (2008) Methods for the thematic synthesis of qualitative research in systematic reviews, BMC Med Res Methodol, 8(45)

6. CaHRU@lincoln.ac.uk Results: what was included • 9 studies were included in the review • Published between 2003 and 2015 • From Australia, Belgium, UK and USA • Participants were mainly older adults (male and female) that were frequent BZD users • Based on semi-structured interviews and focus groups • Some studies were mixed-methods • 3 studies focused mainly on insomnia, others focused on broader aspects of the use of BZDs and z-drugs

7. CaHRU@lincoln.ac.uk Results: quality and synthesis • CASP scores ranged from 6 to10 – no studies were excluded on the basis of quality • We created seven analytic themes: • Patients’ negative perceptions of insomnia and its impact • Failed self-care strategies • Triggers to medical help-seeking • Attitudes towards treatment options and service provision • Varying patterns of use • Withdrawal • Reasons for initial or ongoing use

8. CaHRU@lincoln.ac.uk Model of themes Perceptions and experiences of treatment Influences on initial help-seeking 5) Varying patterns of use of medication 1) Patients’ negative perceptions of insomnia and its impact 3) Triggers to medical help-seeking 4) Attitudes towards treatment options and service provision 2) Failed self-care strategies 6) Withdrawal 7) Reasons for initial or ongoing use

9. CaHRU@lincoln.ac.uk Patients’ negative perceptions of insomnia and its impact • Three studies focused on insomnia looked at the start of the patient journey • Showed that patients perceive insomnia as: • Difficulty falling asleep or waking after sleep onset • Caused by a variety of things • Related to other health conditions both causing them and being caused by them • Having a negative impact on quality of life

10. CaHRU@lincoln.ac.uk Failed self-care strategies • Before seeking help, patients had tried to cope with their health problem in other ways • “Night time routines included playing “mind games” to distract themselves from insomnia, worries and fears. The most common was going to bed late and watching television until falling asleep…Others used distraction through music, reading or driving in the car” (Andrews et al, 2013) • For insomnia, the perceived ineffectiveness of these strategies could trigger medical help-seeking • (Dyas et al., 2010)

11. CaHRU@lincoln.ac.uk Triggers to medical help-seeking • Perceived severity of the condition • Perceived ineffectiveness of self-help strategies • Significant life events • Pressure from others • “Consultation was often triggered by significant life events or pressure from family and friends (social networks). By the time patients consulted with a GP or nurse prescriber, they had begun to see their problem as needing medical treatment rather than part of the range of normal human experience” (Dyas et al., 2010)

12. CaHRU@lincoln.ac.uk Attitudes towards treatment options and service provision • Eight studies included data on what patients wanted or expected when seeking help • Disappointed if a medical professional suggested treatments that they had already tried • Some hoped/expected to receive medication, others preferred not to use medication due to fear of side-effects • Continuity of care • More discussion prior to receiving a prescription in some cases • Longer consultation times • More detailed information in some cases • For their problem to be taken seriously • Specialised withdrawal services • Knowledge of and attitudes towards potential side-effects of medication could influence patterns of use and likelihood of withdrawal

13. CaHRU@lincoln.ac.uk Varying patterns of use • Continuum of patterns of use • “Many said, ‘they do not like to take sleeping tablets, and so only used them when needed’” (Dollman et al, 2003) • “Most said they took the benzodiazepine as prescribed” (Cook et al., 2007) • “ ‘…he said one spoonful and 2 hours later I took another and another’” (Dyas et al., 2010) • Awareness and fear of addiction influenced people to take lower doses in some cases, but not all • “I said, “look at my age…what the hell does it matter I’ve • been addicted for 20 years…” so, he let me have them” • (Dyas et al., 2010)

14. CaHRU@lincoln.ac.uk Withdrawal • Several papers considered withdrawal strategies and enablers and barriers to withdrawal • Barriers included: • Patients feeling that they are unable to reduce their medication (recognising dependence, competing demands) • Fear of consequences of withdrawal • Lack of support from GPs/wider network • Perceived need for specialist withdrawal services • “ ‘I just can’t do it. Are you trying to tell me that I should stop or not take it? I’d be miserable’” (Cook et al., 2007) • “Patients’ responses ranged from the more simply expressed reluctance…to more sophisticated explanations i.e., anticipation that the taper process would be negative” (Cook et al., 2007) • “ ‘I wasn’t making contact with anybody who could give me some clues on how to deal with benzos’” (Parr et al., 2006)

15. CaHRU@lincoln.ac.uk Reasons for initial or ongoing use • Circumstances e.g. anxiety about living alone • Specific health conditions • Perception that medication is effective • Medication was prescribed by a GP • Lack of knowledge of/concern about risks of long-term use • Can live more ‘normally’ • Passive trust in GP to initiate a change in use if needed

16. CaHRU@lincoln.ac.uk Summary • From the perspective of patients, use of BZDs and z-drugs was perpetuated by: • Psychological dependence, and perceived effectiveness of medication • A perceived absence of support and encouragement to withdraw • Lack of specialist withdrawal services • Services not always meeting desires/expectations • Denial of/unawareness of/willingness to accept side-effects • Echoes findings in the wider literature e.g. Reeve et al’s (2013) work on barriers and enablers for de-prescribing

17. CaHRU@lincoln.ac.uk Implications for strategies to support safer prescribing • Creation of online educational resources 2) Improved access to alternatives e.g. CBT-I 3) Extended healthcare professional-patient dialogue

18. CaHRU@lincoln.ac.uk Thank you for listening! Find out more about our research at: www.CaHRU.org.uk