Journal of Telemedicine and Telecare >
Volume 14, Number 8 >
Pp. 443-447
RESEARCHOriginal articles |
* Geriatric Research, Education, and Clinical Center and Research Service, VA Healthcare System, Miami;
Geriatrics Institute, University of Miami Miller School of Medicine, Miami;
Department of Medicine, University of Miami Miller School of Medicine, Miami;
University of Miami, Miami;
** Psychiatry Service, VA Healthcare System, Miami;
Department of Psychiatry, University of Miami Miller School of Medicine, Miami, Florida, USA
Correspondence: Dr Stuti Dang, VAHCS GRECC (11GRC), 1201 NW 16 St, Miami, FL 33125, USA (Fax: +1 305 575 3365; Email: stuti.dang{at}va.gov)
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| Introduction |
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Few published studies have examined the efficacy of technology-based care-coordination interventions for individuals with dementia and their caregivers in a managed-care setting. Some telephone-based interventions such as the REACH trial have successfully used screen-phones (CTIS, computer-telephone integrated system) to provide caregivers with information, conferencing capability and links to community resources, supplemented with educational and group support sessions.5,6
We have conducted a pilot trial of our clinical programme called Telephone-Linked Care (TLC) for dementia. This programme was modelled on the REACH programme.5,6 TLC offered access to resources, as in the REACH trial, and also provided caregiver education and periodic monitoring questionnaires using a screen-phone. The hypothesis was that this would reduce the caregiver burden and depression of family caregivers.
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The intervention was delivered via a CTIS screen-phone, previously found to be well accepted by caregivers (Figure 1).6,7 The system allowed users to make and receive calls and messages.
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The TLC system provided communication, support, education and monitoring of caregivers, supplemented by access to the care coordinator and to a wide variety of community and VHA resources. Caregivers were able to access resources simply by pressing a button. For example, one menu option led to caregiver education on seven core competencies for taking care of individuals with dementia, which had been identified through an expert consensus process in Florida.8 These included understanding dementia, communication, distress behaviours, understanding the needs of loved ones, promoting independence in activities of daily living, the environment, ethics and advance directives. The caregivers were asked to complete automated follow-up surveys via the TLC telephone system.
A nurse care coordinator and a support person were responsible for screening, patient enrolment, care coordination and data collection. Enrolment usually occurred during a visit to the home of the patient, when informed consent was obtained, the screen phone was installed and training was provided in its use. The care coordinator provided education and emotional support to caregivers and helped them with problems concerning the care-recipients, such as medication refills, appointments, coordinating care within and outside the VHA, respite and advance directives. The care coordinator was able to leave reminders for caregivers, e.g. regarding appointments. The care coordinator called the dyads at least monthly.
Care coordination was facilitated via the VA's computerized patient record system, which provided access to medical information about the care-recipients. Using the record system, the care coordinator communicated with the care recipients' providers regarding prescriptions, reminders, appointments and other matters. For urgent matters the care coordinator spoke directly to the relevant doctor.
Caregivers and care-recipients were interviewed at baseline, when demographic data were collected. Caregivers were assessed for burden, depression, coping, quality of life, knowledge and satisfaction using the Zarit Burden Interview (ZBI),9 Center for Epidemiologic Studies Depression Scale (CES-D),10 Brief Cope (COPE),11 SF-36,12 knowledge about dementia and resources (local questionnaires), and a satisfaction survey, respectively. Repeat outcome surveys were collected via the screen-phone after 12 months.
The data were analysed using a standard statistical package (SPSS 14.0, SPSS Inc., Chicago, Illinois). All outcome variables were compared before and 12 months after enrolment in the programme. Analysis of variance (ANOVA) was used to compare the differences in mean ZBI scores between different ethnic groups. Repeated-measures ANOVA was used to examine the effects of TLC on caregiver burden, depression, quality of life and coping skills.
Secondary data on utilization were based on the administrative data from different VHA databases for care-recipients who had been in the TLC programme for at least six months. Data were matched and analysed for patients at six months pre- and post-enrolment in the programme.
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Sixty of the 113 dyads (53%) performed 12-month assessments. The others were not assessed because of staffing problems or because the patient/caregiver refused. The mean ZBI scores for white patients were significantly higher than the mean ZBI scores of the AA patients, both at baseline and 12 months (P = 0.008) (Table 2). The mean ZBI score did not change after 12 months. Although not significant, the depression (CES-D) scores of whites were higher than those of AA patients at both time-points. For other measures – the COPE, SF-36 and local questionnaires on dementia knowledge and community resource scores – there were no significant ethnic differences in the mean scores and no significant change in the scores at 12 months (Table 2).
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Forty dyads responded to the 12-month telephone satisfaction survey. The respondents were more satisfied with the care-coordination (90%) aspect of the programme than the education (77%) or the monitoring (50%). Eighty-five percent of respondents felt that the screen- phones were reliable and easy to use. Approximately 75% believed that the programme improved communications with their VA providers and helped them feel more secure, while 92% said they would recommend the programme to other veterans.
Secondary data on utilization were analysed for 81 patients who had been in the programme for six months. Hospital admissions were reduced from 18 admissions to 11 and hospital bed-days of care were reduced from 282 to 71. Clinic visits decreased from 1614 to 798 and emergency-room visits decreased from 32 to 17. However, the number of outpatient prescriptions increased from 2180 to 2303. The total facility cost for the 81 patients in the six months pre-enrolment was $718,881, which decreased to $364,046 in the following six-month period. The average facility cost per TLC patient decreased from $8875 to $4494 ($1 
0.71).
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There was no change in the caregiver burden or depression scores from baseline to 12 months. This lack of change is consistent with most evidence from other caregiver interventions, including large multisite trials like the MADDE trial.15–17 In contrast, some previous studies have reported an increase in caregiver burden over time in the control group.2,18 Similar increases have been reported in caregiver depression scores.2,18 Other studies have shown that while caregiver depression levels for the control group increased, depression remained stable in the caregivers in the intervention group.19 Therefore, no change in the level of caregiver burden and depression during a 12-month period may be evidence of an effective intervention.
Caregivers showed no improvement in knowledge. This may be because the caregivers predominantly used the screen-phone to contact the care coordinator, and not for information retrieval. However, the positive satisfaction results demonstrated that the availability of the care coordinator assisted by technology, irrespective of usage, can have a positive effect on caregiver satisfaction as they may feel that the health-care system is watching over them.20
The present study suffered various limitations, including the lack of a control group. Hence, it could not be definitively determined if the stabilization of depression and burden was related to the intervention or to other factors (e.g. a ceiling effect or more experience as a caregiver). Second, many possible variables could not be collected due to the reluctance of the caregivers to answer the surveys, the frail nature of the dementia population and limited staff. The number of non-responders raises the possibility of responder bias. To examine this possibility, we compared characteristics of the baseline sample of 113 dyads to the 60 responders at 12 months and found no significant differences between the two groups in key demographic or clinical characteristics.
Because screen-phone use was limited, no conclusion could be drawn about usability in specific ethnic or income groups, or about the effect of the use of the technology and the frequency and duration of contact with the care coordinator. The VA, though similar to other large managed health-care settings, differs in some ways, which may limit the generalizability of the model. The lack of significant findings may be due to an under-powered study. Although a preliminary economic analysis showed that such a programme may result in cost savings, a formal cost-effectiveness analysis of the intervention remains to be performed.
Although the TLC technology was available on demand, its use by the caregivers to access educational information or respond to questionnaires was rather low: approximately 80% of dyads made six or fewer calls and used the screen-phone for less than 30 min. We believe that caregivers appreciate the help provided by such a care-coordination programme, but are often too busy to engage in any activity that is not mandatory and not perceived to provide them with immediate benefits. When a dementia caregiver is dealing with a patient having a specific difficulty, they may be too busy to access the resource.
The use of the technology might be improved by integrating it into the care-coordination process. This might be done by making its use scheduled; increasing the frequency of reminder phone calls; increasing the reinforcement effort by the care team; supplementing tele-education with written educational material; regularly adding new material to maintain caregiver interest; and pairing education with mailing and monthly care-coordinator contact. Intensive training and support of both caregivers and the care-coordination team are known to be important for full utilization of such technology.7,20
The pilot project suggests that care coordination aided by screen-phones may be a useful model for caregiver support. A systematic study is now required.
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