Department of Old Age Psychiatry, Imperial College School of Medicine, London
Department of Psychiatry and Behavioural Sciences, Royal Free and University College Medical School, London
Correspondence: Dr James Warner, Department of Old Age Psychiatry, Imperial College School of Medicine, St Charles Hospital, Exmoor St, London W10 6DZ, UK. Tel: 020 8962 4105; e-mail: j.warner{at}ic.ac.uk
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ABSTRACT |
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Aims To evaluate the utility of patient-held shared care records for individuals with long-term mental illness.
Method Cluster-randomised controlled parallel-group 12-month trial involving 90 patients with long-term mental illness drawn from 28 general practices.
Results Carrying a shared care record had no significant effect on mental state or satisfaction with psychiatric services. Compared with controls, patients in the shared care group were no more likely to be admitted (relative risk 1.2, 95% Cl 0.86-1.67) and attend clinic (relative risk 0.96, 95% Cl 0.67-1.36) over the study period. Uptake of the shared care scheme was low by patients and professionals alike. Subjects with psychotic illness were significantly less likely to use their records (relative risk 0.51, 95% Cl 0.27-0.99).
Conclusions Patient-held records may not be helpful for patients with long-term mental illness.
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INTRODUCTION |
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Aims
The aims of this study were to identify whether carrying a shared care
booklet improves mental health, service contact and patient satisfaction and
to assess the pattern of use of patient-held records by patients and
professionals.
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METHOD |
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Design of the shared care record
The record was designed to be small enough to be convenient, but large
enough to take adequate information. The record was A6 size (similar to a
European passport) and had three sections. Section 1 (front page) was for
recording the patient's initials, date of birth and the names and addresses of
GP, psychiatrist, social worker and keyworker. For reasons of confidentiality,
the patient's full name and address were not recorded on the record. At the
bottom was a return address if the card was found. Section 2 (middle pages)
provided space for recording brief clinical notes and medication details (one
entry per page). Section 3, on the back page, was for recording future
appointments.
Outcome measures
The outcome measures chosen were the Behaviour and Symptom Identification
Scale (BASIS-32; Eisen et al,
1994), the Brief Psychiatric Rating Scale (BPRS;
Overall & Gorham, 1962),
rated 0-6, the Client Satisfaction Questionnaire (CSQ;
Larsen et al, 1979),
hospital admissions and out-patient clinic attendance and default rates. The
BASIS-32 is a self-report questionnaire that provides a comprehensive
assessment of psychopathology. Thirty-two items are rated between
0 for no problem to 4 for severe problems.
Randomisation
For the purposes of this study, the unit of randomisation was the patient's
general practice. Randomising the patient or individual GP could result in
bias, given that the introduction of the patient-held records to some patients
or doctors within a practice may result in a change in the culture of care,
and this could have an impact on the controls.
A list of all the local general practices in the hospital's catchment area was assembled. Practices were numbered sequentially in alphabetical order according to the first line of the address. Practices were randomised to shared care or control status using a computer-generated algorithm.
Recruitment
We (Z.McC., S.T., J.W) recruited subjects near the time of their discharge
(i.e. within a week of the anticipated discharge date as supplied by the
ward). Posters were displayed prominently on the wards and the ward staff were
reminded regularly about the study. Wards were visited at least weekly during
the recruitment periods in order to identify potential subjects. We monitored
discharges in order to identify patients who had been discharged without
seeing a member of the study team. Attempts were made to see at home any
individuals who may have met eligibility criteria but who were discharged
before recruitment. If the potential subject met the eligibility criteria and
gave written informed consent, the BASIS-32, BPRS and CSQ were completed prior
to identifying randomisation status. Subjects in the shared care arm were
given a shared care booklet and a written and verbal explanation of how to use
it. Control subjects received usual care from the primary care and hospital
teams. Apart from the provision of shared care, subjects in both arms were
treated equally.
Promulgation to health professionals
All local GPs, hospital doctors, community nurses and social workers were
informed about the shared care study before recruitment began. The study was
also presented to GPs, hospital staff and social workers at local meetings.
Once a subject had been recruited to the study, a letter was sent to the
patient's consultant psychiatrist, GP and other health workers giving
information about the recruitment. If the subject was in the intervention arm,
further information about the use of the shared care booklet was provided.
Brightly coloured stickers identifying the patient as being in the shared care
study and prompting the health worker to request the record were attached to
the patient's hospital notes and were sent to the GP and other health workers
to attach to their records.
Follow-up
Subjects were assessed at 6 months and 1 year, usually by visiting them at
home. These time periods were chosen in order to assess whether there was any
attenuation in the impact of shared care over time.
Analysis
Power and sample size
The BASIS-32 was used as an outcome measure for the purpose of calculation
of the sample size. In studies evaluating the validity and reliability of the
BASIS-32 undertaken in the USA (Eisen
et al, 1994), the mean total sub-scale score of
hospitalised patients was 1.34 (s.d.=0.68). A difference of 0.7 s.d. in the
BASIS-32 score is equivalent to a mean difference in global scores of 0.48,
which is similar to the difference observed between admission and follow-up in
the original study by Eisen et al
(1994). In order to detect such
a difference between the intervention and control groups at the end of the
study at a significant level () of 5% (two-sided test) and 80% power
(1-ß), 33 patients needed to be recruited to each arm of the study.
Statistical analysis
Categorical data were analysed by the 2 test or comparison
of odds ratio (OR) or relative risk (RR) with confidence intervals (CI) where
appropriate. Parametric data were analysed using Student's t-tests.
Longitudinal data were analysed using analysis of covariance. Data were
analysed on observed cases (i.e. subjects completing all assessments) and by
intention-to-treat using last observation carried forward with all subjects
completing the recruitment procedure incorporated into the final analysis.
Practice-based analysis was also performed on the main outcome parameters. The
intracluster correlation coefficient (ICC) was calculated for baseline values
for those practices with more than one recruit using the formula:
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RESULTS |
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Comparison of shared care and standard care
There were no significant differences in results of patient-based and
practice-based analyses. The results using patient-based data are presented in
Table 3. There were no
significant differences in BASIS-32, BPRS or CSQ scores between groups. The
number of subjects admitted, in-patient days, number of subjects attending as
out-patients and the number of out-patient clinic visits and defaults did not
differ significantly between shared care and control groups.
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Factors that may predict admission during the study period were explored using logistic regression with the following covariates: age, gender, ethnicity, baseline BPRS scores, diagnosis (dichotomised to psychosis/non-psychosis), change of consultant and/or change of GP during the study, admission in the year prior to the study and allocation to shared care or standard care. Two covariates emerged as significant. Admission was more common in patients with psychotic illness (OR=5.2, 95% CI 1.9-14.1) and non-white patients (OR=4.1, 95% CI 1.2-14.2). Treatment allocation was not a significant predictor of subsequent admissions (OR=1.5, 95% CI 0.5-4.0).
Predictors of out-patient attendance and defaults were explored by logistic regression using the following covariates: age, gender, ethnicity, baseline BPRS scores, diagnosis (dichotomised to psychosis/non-psychosis), change of consultant, admission in the year prior to the study and allocation to shared care or standard care. Allocation to shared care did not predict out-patient attendance.
Practice-based analysis
In order to assess whether there was any cluster effect within practices,
between-group and within-group differences in demographic variables and
baseline satisfaction, BASIS-22 and BPRS scores were compared by one-way
analysis of variance. There were no significant differences between practices
with respect to patients' gender, age, ethnicity or diagnostic grouping.
Between-practice differences in baseline scores were compared by analysis of
variance weighted for numbers of subjects per practice. There were significant
differences between practices in baseline BASIS-32 scores (F=1.91,
d.f.=27 and 62, P=0.02) and BPRS scores (F=1.61,
P=0.06), but not the number of admissions in the year prior to entry
to the study (Kruskal-Wallis 2=28.5, d.f.=27,
P=0.38). The ICC for baseline values for the BASIS-32 was 0.24 and
for the BPRS was 0.30.
Given that the mean number of patients per practice in this study was 3.2, the inflation factor for the ICC is 1.53. In other words, given the a priori power calculation based on the BASIS-32-suggested sample of 66, using the ICC for the BASIS-32 the sample size should be increased to 100 to achieve the same power.
Use of shared care records
Subjects' use of records
During the course of the study no records were returned to the investigator
after being lost; 24 (44%) of the 55 individuals given a shared care record
said that they had used it and 12 of these records were retrieved at the end
of the study. The number of entries per booklet varied from two to eight
(median=4). The number of entries by professionals in these 12 booklets is as
follows: hospital doctor=9, GP=5, social worker=4, community nurse=3.
Professionals' report of record use
At the end of the study, details of record use were sought from all
professionals who had patients allocated to the shared care arm of the study.
Thirty-three of the 51 questionnaires (65%) were returned. Fourteen
professionals reported remembering having seen a record during the study (five
GPs, three consultants, two community nurses and four social workers). Eight
professionals recalled having records volunteered by the patient and five
reported asking the patient for the record. Nine reported writing in a shared
care record (three GPs, one consultant, three social workers and two community
nurses). Seven of the fourteen respondents who saw a record felt that this was
helpful.
Predictors of use of shared care record
Predictors of record use were explored using logistic regression. Age,
marital status, ethnicity, change of consultant or GP, baseline admission rate
and baseline scores of the BASIS-32, BPRS and CSQ did not emerge as
significant predictors of shared care record use. Diagnosis was a predictor of
record use: subjects with psychotic illness were significantly less likely to
use their records (RR=0.51, 95% CI 0.27-0.99, P=0.04).
Eighteen (39%) of the subjects in the shared care group who were followed
up reported losing their shared care record at least once. Ten subjects who
reported losing their record at the first follow-up were given a replacement.
Nine of this group reported losing the record for a second time. Subjects'
reported loss of the record was not significantly associated with diagnosis,
gender, change of consultant or GP or admission to hospital over the study
period. One of the 13 (8%) non-white subjects in shared care lost their shared
care record compared with 17 of the 42 (40%) white subjects
(2=4.84, P=0.04, two-tailed Fisher's exact test).
Baseline global and sub-scale scores for the BPRS were not related to loss of
the record.
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DISCUSSION |
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Shared care in psychiatry
A variety of shared care models have been suggested
(Hickman et al,
1994a), including patient-held records, computer-based
shared care, standardised record sheets sent between GPs and hospital,
community clinics and liaison. In situations such as psychiatry, where many
agencies are often involved in the care of patients, only the first two models
are feasible for most patients. Potential advantages to patient-held records
include more rapid dissemination of information between professionals,
strengthening of the GPs' role and greater involvement of the patient in
making decisions about care. However, there are several potential drawbacks,
including confidentiality issues, relying on the patient to carry the records
and duplication of information.
Methodological issues
A large number of potential subjects were excluded, although this does not
necessarily undermine the validity of the trial. Many potential subjects were
excluded because they failed to meet the chosen criterion of severe mental
illness (Kendrick et al,
1995). Shared care programmes are likely to be of less salience to
both patients with less chronic illness and their professional carers. Another
principal reason for non-recruitment was that the potential subject or the GP
came from outside the catchment area of the hospital. We wanted to test shared
care records in an optimal setting with GPs and patients who had contact with
the service.
Despite equal numbers of practices being allocated to each treatment arm, more patients were recruited to shared care than to standard care. There are a number of possible explanations for this disparity, one being that there were more GPs (n=111) in the practices allocated to the shared care limb than the standard limb (n=105), but this is unlikely to account for all the difference by itself. Another possible explanation is that several large practices close to the study centre were randomised to the shared care limb and a larger proportion of patients with chronic mental health problems may be registered with these practices because of their proximity to the hospital and the fact that they had general practice partners with an interest in mental health.
Effects of cluster randomisation
The size of the cluster effect suggests that this study may have been
marginally under-powered. When cluster randomisation is used, there may be a
difference in the variance between practices and the variance between patients
within practices. The variance detected in this study was large (ICC=0.24 for
the BASIS-32), suggesting that too few subjects were recruited. Nevertheless,
there were no trends towards an effect of shared care, and a type II error,
although possible, is not likely.
Use of shared care records
There was a low rate of usage of shared care records among patients and
professionals alike, despite the scheme being widely advertised. Patients may
have been reluctant to carry shared care records because they were concerned
about confidentiality, found the records stigmatising or did not appreciate
their potential usefulness. Lack of motivation and organisational abilities in
patients with severe mental illness would be another factor to explain the low
rate of usage. Professionals may have been reluctant to use the records
because they represent a time-consuming duplication of information, they may
have been uncertain about what to write in the records or feared questions or
censure about the content. Some professionals may have lacked a feeling of
ownership about the study, despite our efforts to involve them.
It is possible that shared care records do not improve patients' well-being no matter how diligently they are used. We cannot assume that better communication will have a positive impact on the outcome parameters measured. Shared care records may enhance communication between professionals but efficacy of communication per se is hard to measure, and all the outcomes chosen are at a level beyond communication and rely on the notion that better communication results in better health or satisfaction or service use.
It is difficult to be dogmatic about the utility of shared care records because of the methodological problems encountered during the study. However, patient-held records (even under the guise of smart cards) should not be introduced to this patient group, at least in the way attempted here, without further evaluation. For a scheme of this nature to work in the future it is likely that patients targeted for shared care will have to be selected carefully, probably excluding those most severely ill patients who may benefit most from shared care. Furthermore, any future shared care scheme should probably be introduced wholesale, with a dedicated coordinator, thus altering the culture of care throughout the service. Paradoxically this would reduce the opportunity to evaluate future schemes under controlled conditions.
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Clinical Implications and Limitations |
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LIMITATIONS
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REFERENCES |
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Received for publication December 20, 1999. Revision received April 20, 2000. Accepted for publication April 27, 2000.