Patients' knowledge and views of their depot neuroleptic medication

Results Many patients had limited knowledge of their medication, its benefits and side-effects as well as the rationale for its use. The biggest gaps were found in patients' knowledge of the long-term side-effects of their medication. Clinical implications Our findings raise doubts as to the capacity of some patients to give informed consent to their treatment. A number of steps are outlined in order to raise patients' standard of knowledge.

Neuroleptic drugs are widely used in psychiatry, both as oral and depot preparations. Despite the advent of novel antipsychotic drugs, side-effects remain a reality for many patients who are exposed to such drugs. There is consensus that psychiatric patients should receive adequate information about their psychiatric medications, especially if these are administered on a longterm basis (Kleinman et cd, 1993;Brabins et cd, 1996;MacPherson et cd, 1996). Obtaining in formed consent, an issue reviewed by Brabbins et al (1996) not only constitutes good clinical practice, but is advisable given the possibility that psychiatric patients or their families may seek legal redress if faced with long-term adverse side-effects.
While a number of studies have examined psychiatric patients' knowledge of their neuro leptic medication (Soskis. 1978: Soskis & Jaffe, 1979Geller, 1982;Clary et oÃ-, 1992;MacPherson et cd, 1996), few studies have focused on those patients who receive depot neuroleptic medica tion. The aim of the present study was, therefore, to investigate further psychiatric patients' knowl edge of their depot neuroleptic medication.

The study
The Goldenhill Resource Centre (GRC) offers a community psychiatric service to a population of 47 000 people who live within Clydebank, a town situated to the west of Glasgow. It offers a comprehensive range of services to its users including, for some patients, the regular admin istration of depot neuroleptic medication. We assessed patients' views and knowledge of their medication by using a semi-structured interview schedule specifically designed for this purpose. Questions

Ability to identify drugs currently taken
Twenty-six patients (44%) were able to identify correctly the name, dosage and dosage interval of all prescribed psychiatric medications (including depot medication). Thirty patients (63%) were able to identify correctly the name, dosage and dosage interval of their depot neuroleptic medi cation. Twenty-four patients (41%) received both depot and oral neuroleptic medication.

General views of depot medication
Twenty-three patients (39%) expressed a positive view, 17 a neutral view (29%) and 19 (32%) a negative view of their depot medication. The administration of depot neuroleptic medication was regarded as important by 42 patients (71%), but only 34 patients (58%) anticipated any negative consequences as a result of disconti nuation. Thirty-four patients (58%) stated that they would continue to take their depot injec tions if the decision about this was entirely up to them.

Perceived benefits of depot medication
Thirteen patients (22%) were able to identify spontaneously two or more potential benefits. Twenty-seven patients (46%) identified at least one benefit and 19 patients (32%) could not identify any benefits. Benefits commonly men tioned included a calming effect, reduction of auditory hallucinations, better sleep, control of troublesome thoughts, a mood-stabilising effect and a general improvement in health. Table 2 summarises patients' responses which were obtained when potential benefits of depot medication were systematically inquired about. On the basis of these responses, 47 patients (80%) could identify two or more benefits.  (75)(70)(64)(51)(53)(44)(44)(42)(4

Perceived drawbacks and side-effects of depot medication
Fifteen patients (25%) spontaneously identified two or more potential drawbacks of depot medication. Twenty-one patients (36%) were able to identify at least one drawback and 23 patients (39%) could identify no drawbacks at all. Commonly mentioned drawbacks included sideeffects, painful injections and having to attend the depot clinic.
Forty-three patients (73%) were aware of the possibility of side-effects but only nine patients (15%) seemed aware of the possibility of longterm side-effects. Table 3 summarises patients' spontaneous responses when asked about po tential side-effects. Twenty-eight patients (47%) could identify at least two side-effects, 16 patients (27%) one side-effect and 16 patients (25%) no side-effects at all. Table 4 summarises patients' responses when specifically asked about certain common side-effects. Using this approach, the number of patients who could identify at least two potential side-effects in creased to 54 (92%). Only four patients (7%)  stated that they had heard of the concept of tardive dysklnesia although 13 patients (22%) were aware of some of its features. The majority of patients (57. 97%) was able to identify at least one person who they could approach for help in case of side-effects.

Information regarding depot medication
Thirty-one patients (53%) stated that they had received adequate information on their depot neuroleptic medication. Further information was most often requested on side-effects (including long-term side-effects), mechanism of action and proposed length of treatment. Most patients (45, 76%) favoured verbally given information although written information was regarded as helpful by 41 patients (70%). The benefits of additional aids such as a video or an audio tape was endorsed by 32 (54%) and 26 patients (44%) respectively. Fewer patients showed an interest in participating in educational groups with other patients (24, 41%).

Application of standard
Five patients (8%) met all seven criteria of our standard (median score five, range 2-7). Overall attitude towards depot medication, willingness to continue with it and a view that enough information had been received was not signifi cantly associated with these scores. Patients who viewed the administration of their depot medica tion as important had higher scores than those who were ambivalent or did not consider it as important (Mann-Whitney test, P=0.03).

Comment
Our results suggest that patients had vari able levels of knowledge regarding their depot neuroleptic medication. While most patients were able to identify some benefits and draw backs/common side-effects, especially when these were specifically inquired about, few patients had any knowledge of potential longterm side-effects such as tardive dyskinesia. This is worrying given that depot medication is often administered over long periods of time and raises questions with regards to patients' capacity to give informed consent.
Many patients felt that they had not received enough information on their depot medication. This may reflect the forgetting of such informa tion, a lack of understanding of previously given information or simply the fact that sufficient information had not been given. It is beyond the scope of our inquiry to distinguish between these various possibilities.
A major concern of clinicians is the possibility that informing patients of potential side-effects of medication may lead to increased problems with adherence. Poor adherence is a major factor leading to relapse in chronic schizophrenia and if such relapses occur repeatedly, may have adverse prognostic effects. There is, however, evidence from the literature that improving patients' knowledge about their medication does not in fact lead to poorer adherence (MacPherson et al 1996;Brabbins et al 1996). In addition, there has been some criticism of the concept of adherence and some have argued for the adop tion of a collaborative approach, namely 'con cordance' (Marinker, 1997).
Few patients in our study met the knowledge standard which we had adopted at the outset. If this standard is accepted as reasonable (we would welcome comments and criticisms), then measures should be taken to improve patients' level of knowledge. We are currently considering the implementation of the following steps.
(a) As part of the depot clinic, patients will be asked regularly about side-effects (possi bly by using a side-effect check-list) and will be allowed to discuss issues regarding their depot neuroleptic medication. An open out-patient clinic will be run along side the depot clinic to allow patients easy access to medical advice if required. (b) Patients who receive neuroleptic medica tion or who are commenced on such medication will also be offered a leaflet with relevant information. This will include information on treatment rationale, ex pected benefits as well as short and longterm side-effects. The leaflet will clearly identify members of staff which can be approached if troublesome side-effects develop. Patients will be offered an oppor tunity to discuss the information con tained in the leaflet and to ask supplementary questions. Patients who do not wish to receive a leaflet or who fall to read it will be offered verbal information, (c) In patients who in view of the severity of their illness have difficulties in assimilat ing or retaining information regarding their depot medication, continued efforts (including the involvement of family mem bers) will be made to ensure an acceptable level of knowledge.
By carrying out the above steps, we are aiming to raise our patients' level of knowledge and demonstrate such raised knowledge, in due course, by repeating our survey. It is hoped that this will contribute to improved adherence to treatment. This has recently been demonstrated for 'compliance therapy' (Kemp et al 1998), an approach which specifically targets patients' adherence with their treatment. Among other things, patients are invited to discuss their views of their medication, weigh up its pros and cons, learn to differentiate symptoms of their illness from side-effects and consider the consequences of not taking medication. Our patient group may also ultimately benefit from such adherence therapy.
Finally, we wish to acknowledge that we did not ask and in fact do not routinely inform patients about less common side-effects of their depot neuroleptlc medication such as the neuroleptlc malignant syndrome or blood dyscrasias. A patient fact sheet on depot neuroleptlc medication Issued by the Royal College of Psychiatrists (1993) does not mention such side-effects. This raises the question of what constitutes adequate information, an issue which is discussed by Brabblns et al (1996) who comment on the difficulty in "finding a balance between providing sufficient information to enable patients to give real consent and providing so much information that the patient is needlessly frightened".