Abstract
We interviewed nurses and patients with heart failure who were participating in a research trial of home telemonitoring in which weight data were monitored automatically by a call centre. A total of 35 interviews were conducted and the transcripts were analysed thematically. The results indicated that nurses disagreed about the role of weight monitoring and the practicalities of telemonitoring in their daily practice, indicating that the process was idiosyncratic to each user. The lack of personal feedback and nursing contact discouraged patients from weight monitoring, suggesting that a feedback mechanism may have to be adapted to suit patients. There were other factors which created barriers to acceptance by patients and staff. Home telemonitoring for heart failure cannot be evaluated effectively using the standard approach commonly employed. New studies are required.
Introduction
‘The high occurrence of readmission to hospital in patients with chronic heart failure is often due to causes which are potentially preventable, such as failing to seek medical attention when symptoms worsen or non-adherence to medication or diet plans’. 1,2 Disease management programmes incorporating weight monitoring have been suggested as effective strategies, 3–5 the efficacy being measured largely in terms of a reduction in mortality and in the number and duration of hospitalization events. 6–9 Studies relating to remote monitoring have, however, addressed a surprisingly low proportion of patients. Problems of poor participation, non-compliance and restrictive entry criteria in programmes have been reported previously 10 and in one recent study 11 the authors found that only 40% of heart failure patients originally assessed for eligibility went on to become participants in the study.
We have investigated how a remote and automated weight-monitoring system might affect the care of the patients in a wider sense than solely the cost-effectiveness achieved for the minority 40%.
Methods
Patients and staff participating in a research trial of automated weight monitoring in heart failure were interviewed. The study was approved by the appropriate ethics committee.
Patients who required regular weight monitoring, together with their partners, were invited to participate by their heart failure nurse. Patients were excluded if they:
Were in heart failure NYHA class 1; Unable to stand to be weighed, including those in NYHA class 5; Had dementia and were unable to give informed consent; Had other weight changing conditions which might confound the results; Were aged less than 18 years; Were unable to speak English, which was the only language supported at the Call Centre.
In the research trial, patients were randomized 1:1 either to receive telemedicine weighing scales in addition to usual care or to receive usual care alone. The weighing scales transmitted the weight data to a central call centre where it was monitored daily against limits pre-defined by the patient's nurse.
A total of 35 interviews and one focus group were conducted. Those interviewed were:
14 patients (8 in the telemedicine group, 6 in the usual care group); 10 partners/carers (7 in the telemedicine group and 3 in the usual care group); 4 individual heart failure nurses and one focus group of nurses.
In addition, four patients, two carers and one heart failure nurse who had been interviewed at the start were also interviewed at the end of the study. The interviews were recorded and subsequently transcribed verbatim. A thematic analysis was then conducted using NVivo software.
Results
The participants chose to address very similar topics but demonstrated fundamental differences in opinion and reasoning, often at extreme ends of the spectrum.
Recruitment
Some nurses were found to ‘cherry pick’ participants, one commenting ‘I know (this patient) would not comply.’ However that judgement was based on the nurse's experience of existing practice, which might not be relevant to telemonitoring, e.g. the telemonitoring company would telephone the patient if the weight was not received, so if non-compliance was due to forgetfulness that would be overcome. Thus, the nurse's difficulty in comprehending a different working practice obstructed the opportunity to investigate the potential benefits for this patient.
Similarly, some general practitioners declined the invitation to recruit patients because they ‘didn't have any patients at a stage where they would benefit from weight monitoring’ (a view later contradicted by some of the nurses) or because they had ‘a good heart failure nurse and there are obvious benefits for patients in having local contact specialist support’. This misses the point of their own nurse using telemonitoring as a tool to assist her own practice. It seems that a cycle exists in which a new practice cannot be adopted until it is comprehended, and it cannot be fully comprehended until it is adopted in practice.
Out of 58 patients originally agreeing to participate, 34 (59%) did not return signed consent forms, subsequently saying they had ‘forgotten’, or ‘put it down somewhere.’
Weight monitoring
Nurses agreed unanimously that weight monitoring was ‘fundamental’ in the early detection of fluid retention, but disagreed in assigning that importance to every patient. One nurse thought that ‘not all are at high risk of fluid retention…’ while another thought it was essential for every patient because ‘they can develop fluid retention overnight.’
There was similar disagreement about the frequency of weight monitoring and at what stage of disease it should begin. Some thought that daily weight monitoring was counter-productive, ‘reinforcing ‘illness’ and making patients obsessive.’ Others considered the daily routine essential because of the potential for rapid deterioration, and thought that ‘NYHA1 patients need to weigh themselves daily as well,’ partly in order to ‘get patients in the habit’ before memory deteriorated.
Telemonitoring in practice
The telemedicine service was utilized very differently by each nurse, one retaining complete control, receiving and reviewing the data for each patient and others only alerted when the weight change exceeded pre-defined limits. One was content for the staff at the call centre to contact patients in the first instance, to check weighing procedures and discuss diuretic medication.
Two nurses were strongly in favour of using electronic weighing scales during periods of titration, but felt that once patients were stable they should be encouraged to monitor their own weight, until in the later stages of heart failure when poor eyesight or forgetfulness made telemonitoring a necessity again. These views were based on the negative assumption that funding would not be available for this service for every patient, even though they had no idea what the cost would be, or if using them to fulfil a training role in early stage disease would be offset by more effective monitoring in later stages.
Patients
In general, patients did not attach any importance to weight monitoring as a strategy for keeping themselves well, partly because they invariably linked weight gain with diet, but mainly because their ‘weight didn't change much.’ Monitoring ‘wellness’ was not valued because they received no individual feedback or confirmation, and in many cases perceived the nurse's acceptance of their poor monitoring performance as confirmation that it was not necessary.
Patients were disappointed that the telemonitoring had not led to an increase in nurse contact, to the extent that one withdrew from the study after a short time because ‘nobody seemed to bother.’ However, when the nurse commented that she had found it useful in keeping her informed of the weight the patient reversed her opinion and asked to keep the scales, because ‘the nurse wanted to keep an eye on me.’ Another patient refused to act on advice from the call centre because he preferred to wait until his heart failure nurse returned from holiday. The call centre continued to monitor the situation and the patient came to no harm. However, these examples suggest that the actual monitoring process is less important to patients than knowing that ‘their’ nurse is paying heed.
Practical matters
Remote monitoring had both advantages and disadvantages for the patients. On the positive side, one patient reported that he probably ‘wouldn't have bothered getting out of bed some days’ if it had not been for the fact that he was aware his failure to weigh himself would be noticed by the staff at the call centre; some carers felt reassured when they heard their husband's weight being sent to the call centre. One patient did not have access to a heart failure nurse and also did not understand the concept of daily weight monitoring. However, in addition to the telemedicine company monitoring his weight, the data were sent to his son in Australia. The son used that information as a basis for discussion and reinforcement about health matters with his father, and telephoned other members of the family living near their father to take action if he felt it was necessary.
On the negative side, installation of the equipment was the most common problem. Three patients received assistance with installation, two from the telemedicine company and one from the nurse. This presented no problem to one nurse but another expressed some concern, due to lack of time and lack of confidence in her ability to undertake the installation.
The weighing procedure presented a problem for two patients, who had to stand on the scales for several minutes before the reading stabilized and the data were transferred. This problem was found to be due to the soft carpeting underneath the scales and was solved by standing the scales on a small piece of plywood.
One patient commented on the cost of the daily telephone call which was necessary to transmit the weight data. Although the daily rate was small, the monitoring cost was presented on his quarterly bill as a single total of just over ninety calls. Two carers commented that they had lost their own weight monitoring facility (for dietary purposes) as there was insufficient room for two sets of scales in their home and the electronic scales were specific to the patient concerned.
Discussion
Health-care professionals and patients hold numerous conflicting beliefs and opinions which, together with clinical problems, create barriers to the evaluation and adoption of telemonitoring in general. This also raises practical and ethical questions about the evaluation of appropriate care in chronic heart failure. Forgetfulness is common in patients with heart failure and may make them powerless to access resources which, paradoxically, may help to solve the problems caused by failing cognitive ability. In recruiting participants to a study, the boundary between ‘encouragement’ and ‘harassment’ is unclear, as is the boundary between ‘education’ and ‘behaviour modification’ in promoting daily monitoring. Patients cannot be coerced, and the moral and ethical dilemma between a patient's right to autonomy and the obligation to provide care is a difficult one to resolve if the patients' needs, both clinical and emotional, are to be met. In these times of rising patient numbers and dwindling resources, personal nursing contact may have to be rationed. Best practice may turn out to be a balance between continuous clinical monitoring, the overall wellbeing of the patient and effective use of health-care resources.
Heart failure care is idiosyncratic in nature, from the standpoints of both the professional caregiver and the patient. Such an idiosyncratic process cannot be evaluated effectively using the standard approach commonly employed. New studies should address the need to:
Identify elements of best practice in terms of weight monitoring; Identify elements of best practice related to telemonitoring; Enable each health-care professional to deliver the best practice within his or her capability, acknowledging that those professionals do not have an absolutely identical toolbox of skills and therefore that ‘capability’ will be different for each; Expand the circle of telemonitoring care to include those patients who have traditionally been excluded by virtue of age or debility.