Heart failure

Having their heart condition monitored generally gave people a sense of reassurance that they were being looked after, test results were satisfactory and any problems would be quickly dealt with. Several said it gave them ‘peace of mind’. Mike, who was fitted with an ICD after a cardiac arrest but had no previous history of heart problems said that having his ICD monitored at home made him feel safe.

For some people, having tests done or waiting for results could cause anxiety. One woman said she got ‘worked up’ before hospital appointments, so wasn’t surprised if told her blood pressure was raised. It is well known that blood pressure measurements can be higher when taken in a medical setting than when taken at home (‘White Coat Syndrome’); this is a reason why home monitoring may be better for some people. One man said he worried that something had gone wrong when he was asked for a repeat blood sample, so was relieved when the results were alright. Others could feel frustrated by the need for frequent appointments with health professionals, often at different locations and sometimes at inconvenient times of day, although this was easier if they were retired, like Peter. Anne, whose monitoring included a weekly automated telephone call to check on her condition, said that although it had been a comfort at first she now finds it ‘an encumbrance on one’s life’ and an unwelcome reminder of her heart condition. There may be psychological impacts on other people, not just the person being monitored. For instance one man said his wife was upset by the sight of his remote monitoring device on the bedside table because it reminded her about his condition. After attending a meeting for users of the remote monitoring device, they learned that the machine could be hidden in a cupboard and still work, which helped his wife to cope.
 
Some people we talked to were asked how they would feel if changes to their monitoring were suggested and what specific changes would be acceptable to them. People commonly said that if a change was proposed they would want to know why and expected that their health professionals would discuss it with them. One explained that he wanted the option to disagree; others said they would be happy to go along with changes so long as they could see a good reason for them. People associated how often they had check-ups with the stability or severity of their condition — if they were told they needed them more often it would suggest their condition was getting worse; being seen less often would suggest that their doctors felt confident in the stability of their condition. An elderly man who experienced bouts of low blood pressure as a side effect of his medication, leading to falls, commented that, because his blood pressure seemed to fluctuate, more frequent testing might enable him to plan his daily activities better.
 
People who were not currently monitoring any aspect of their condition at home were asked how they would feel if asked to do so by a health professional. Some said they wouldn’t mind measuring their weight or blood pressure if it would help the professionals, particularly if the equipment was supplied. Some were happy in principle but wouldn’t want to do it too often. For instance, Robert who was already weighing himself weekly for his own interest said he would be happy to check his blood pressure at the same time but not more than weekly while his condition was stable. Peter said they would not want to monitor their condition themselves at all because they felt it could take over their lives and make them obsess about it.


Summary added in April 2016.