Heart failure

In addition to seeing a health professional periodically for check-ups some people had been asked to monitor aspects of their heart condition at home. This commonly involved regular (daily or weekly) measurements of weight and/or blood pressure. Some had been advised to adjust the dose of their diuretic medicine each day according to their weight.

A booklet or folder was sometimes given to people in which they could record measurements such as their weight, blood pressure and fluid intake, but some said they no longer kept records. Anne, who weighed herself daily, said she only passed on to a professional her weight measurement taken on the day of a check-up as she didn’t want to be weighed again in clinic; she believed her measurements (taken at the same time each morning before she dressed) were more reliable. Some people had been loaned weighing scales and/or a home blood pressure monitor. Daniel sent his weekly readings to the hospital by text as part of an automated telehealth system; he said he didn’t mind doing it but was likely to panic if he found his blood pressure had dropped too low. Roger transferred his daily measurements to the hospital automatically via an iPad over the internet as part of a clinical trial of home monitoring. He said that despite being not very computer literate he had found the iPad easy to use. He chose to buy his own equipment after the trial ended and continues to measure it 3-4 times a week for his own interest. Another man was supplied with a blood pressure monitor and asked to use it daily for about three months and share the figures with his GP until his condition stabilised, after which he chose to buy his own machine. Like Anne, people who had not specifically been asked to self-monitor sometimes used their own home equipment to measure their weight or blood pressure on the day of a check-up with a health professional in order to save time at the appointment. Cathleen said she used a blood pressure machine in the GP’s waiting room. Others occasionally measured their weight at home for their own interest, mainly because they were using dietary changes to try to lose weight or maintain a healthy weight, but few kept records. Some checked their blood pressure occasionally, particularly if they felt unwell. Cathleen said she didn’t want to do it too often for fear of becoming a hypochondriac. Richard measures his blood pressure when exercising and before seeing his GP. Beth had a machine to measure her blood oxygen saturation at home, and did this for her own interest if she felt particularly breathless. Paula, who lived in a remote location and was taking warfarin, obtained her own blood testing kit for measuring her clotting time or INR (International Normalisation Ratio) at home. Her doctors allow her to adjust her warfarin dose herself according to her weekly measurement. She still has her INR measured twice a year by a professional to ensure that her home machine is producing reliable measurements. People who have a pacemaker or ICD (implantable cardioverter defibrillator) usually attend a special hospital clinic at regular intervals where the data is downloaded from the device and, if necessary, adjustments are made to it (see ‘Medical Devices for heart failure’). However, implantable devices can also be checked remotely using telemonitoring via a telephone line or a wireless connection at home. In this way, many implantable devices are able to send clinical data to health professionals without the need for a visit to the hospital. A man had a machine by his bed that monitored his pacemaker and sent data to the hospital every night over the internet. Paula had been supplied with the necessary equipment to send the data from home manually at an agreed time to reduce the number of visits to the clinic to have her pacemaker checked. Initially the data was transmitted over the telephone line but she now uses a satellite link. People we interviewed who had an ICD had it monitored via a machine in their bedroom, which downloaded and transmitted data to the hospital via the phone line or the internet at an agreed interval. This might be daily, monthly or every three to six months. One said it could save him three trips to hospital each year. Daniel said it was comforting to know that the hospital would quickly pick up any problem with his ICD. It is possible to take some remote monitoring devices with you on holiday but one man said he was prepared to take the risk of not being monitored for a fortnight as his disease was stable at present and he would conserve his energies while away.  

 
Summary added in April 2016.