The formal demographics, location and other details were not available for all bloggers from blog postings that were collected for this study; therefore, this information, helpful though it might have proved, is not reported here.
Qualitative analysis of the content of the collected blog postings resulted in the identification of seven themes, which, in no particular order, were on patient benefits, equipment related issues, managing PT/INR, laboratory testing, interaction with healthcare providers, insurance and social issues (Figure ). Findings for each of the themes are presented as follows.
The benefits from self-testing were indicated to be time saved, travel reduction, personal control, choice and freedom, cheaper testing, and peace of mind. In reporting the benefits of having a self-testing coagulometer, one of the UK based participants wrote that the device would save his time as well as avoid a journey to the clinic for testing that he would not be able to make because of his ill health. He stated that it would also reduce the costs of the NHS (National Health Service - public sector healthcare providing service in the UK) due to fewer appointments. Reporting self-testing advantages such as cheaper testing and freedom of testing anywhere, a patient wrote that he has bought a self-testing device because he was going on holiday to a country where the cost of one PT/INR test was between £30 and £40.
A number of participants did not want to go to the hospital clinic for PT/INR testing for various reasons. For example, a female patient who did not like to travel to the clinic for testing wrote that she did not like going to see her doctor every other day therefore she would like to have a coagulometer and perform the PT/INR testing at home. Similarly, another patient, who had a HVR, wrote that if the opportunity were given then she would like to perform home testing compared to going every couple of weeks to a clinic for the testing because it was time consuming. A participant who was on heparin for a year wrote, "It would have been so useful to have a home machine, instead of having to visit the labs all the time." Another participant was interested in self-testing because she had to wait for at least two hours every week during testing at the clinic, which she did not like.
Given the freedom of self-testing with a portable coagulometer, a patient said that he wanted to buy the device because his INR could become suddenly very unstable and he could not get to the hospital because of ill health. In addition, this patient liked self-testing because it is undertaken by finger pricking and he disliked hospital based testing which requires drawing venous blood by needles, which he cannot handle.
A participant in favour of having a self-testing device wrote, "I can also check at any time, especially if feeling ill." Another wrote, "I was so excited to be doing home testing and having control of over this part at least." Given the possibility of self-testing over a longer period, a patient wrote that he had been performing self-testing for about two years. However, one of the participants was surprised to know about the possibility of self-testing. She wrote, 'I had no idea such a service (i.e. INR self-testing) was available."
One of the participants wrote that having a device is good value for money. Another patient believed that self-testing was the future. However, one of the participants wrote that she was thrilled on getting a device but became less confident after getting it.
Issues raised relating to the PT/INR self-testing device were high cost, reliability and quality, calibration, lack of confidence in accuracy, different makes and models, places to buy devices, and training in how to use the device.
The most frequently cited issue in relation to the equipment was the cost of the device and the test strips that were needed. A number of participants wrote that the device was expensive. They even compared the cost of a coagulometer with a glucometer and said that the former was more expensive then the latter. A participant wrote that the device cost plus the maintenance cost was a lot to spend for a service which can be provided free by a community nurse visiting at home. Another participant wrote that when the device price comes down she would do self-testing. This showed that some patients might be interested in PT/INR self-testing but are held back due to the high cost of the equipment. Another participant wrote that the cost incurred on the device can be claimed back effectively through paying less tax and from an insurance claim. This might be context specific, in that these points are more particular to individual healthcare systems funded in different ways, such as that in the USA compared to the UK. Regarding test strips, a participant said that he could get the strips though a clinician's prescription, while another participant wrote that he was waiting to hear from his doctor about the test strips, which he thought were very expensive.
A number of participants wrote that home testing was more expensive than the alternatives. One of them said that the cost of single home test would be about US$ 9.00 and another wrote that the cost of self-testing could be high depending on the frequency of testing.
One participant wrote that he has a second hand device, which he bought at half price. However, there was no discussion on the performance and reliability issues in using a second hand device. Nonetheless, in raising the issues of the reliability of self-testing devices, one of the participants asked whether there was any accuracy problem.
A few participants wrote that the devices need to be calibrated and one takes his device to the laboratory for checking every six months. Another wrote that he took his device to his cardiologist's office and they took several weeks to get it right.
One of the participants asked 'is there only one manufacture making them?" A few participants replied and some said there was only one manufacturer and others said there were a number of the manufacturers. A participant asked, "What is the best brand/model to use?" In response to this question, the names of a few makes/models were mentioned. One of the participants wanted to know where one could buy the best device. A few participants replied that they bought the devices directly from the manufacturers.
Regarding training in how to use an INR testing device and how to perform a test, one of the participants wrote that he had some literature and a demonstration video but he thought he still needed further training, which was going to cost him about £120, though this was less than his anticoagulation clinic would charge. Another participant wrote that training is provided; however, the details of the training provider were not mentioned. Nevertheless, a patient wrote "absolutely brilliant and easy" about the use of the device. A female participant however said that she does not have confidence in the results of home testing because the results were different from laboratory results.
A few participants wrote about their experience of INR testing at hospital clinics and laboratories. One participant who attended an anticoagulation clinic wrote, "I ... hated it.....Also had to wait at least 2 hours to be seen every week." Another wrote that having INR test at a lab was inconvenient as well as costly. The same participant also mentioned that getting feedback from the lab about what to do next was also difficult. A participant wrote on his frustration about the cancellation of his lab test appointment, changes in testing frequency and anticoagulant dose as well as getting a new appointment and medication and contacting the doctors, the pharmacy and the laboratory.
However, some of the participants were in favour of INR testing at a lab as one participant wrote that having INR tested at the lab is advantageous because they control many more variables - which were however not described. One patient wrote that the results of INR testing by herself were about 0.4 higher compared to the lab results. The same participant also wrote that INR test results vary between laboratories. Patients compared PT/INR results of self-testing with laboratory based testing. In this regard, a participant wrote that soon after having an INR tested at the lab he performed self-testing to check the accuracy between the two.
Issues in managing PT/INR comprised the frequency of testing, fluctuations and the target (therapeutic) INR level and communicating INR self-test results.
A female participant with a HVR wrote that she was testing every week at home and every three weeks at laboratory. While another patient said, "I won't be testing daily - probably 1-2/week may be spaced out further if I ever get my levels stable." A patient who had PE wrote that her PT/INR was tested twice a week while the other patient suffering from same medical condition was going to the clinic in the next four weeks for the testing. A male participant with DVT was tired of weekly testing. He wrote, "Next INR test in two week, finally! Nuff of this once a week test." Conversely, a participant wanted to test more frequently but her clinic did not want her to do that. On this situation, she wrote, "I get tested once a week, and I have had nurses/doctors tell me I can wait btwn (between) 2-4 wks (weeks) to test again, but I don't feel comfortable."
Participants exchanged their views on normal and individual therapeutic levels of the INR. One of them wrote, "I think 'normal' is 1." Another wrote that the range of his INR was 2-3. A male participant with PE wrote that the therapeutic rage of his INR has to be between 2.5 and 3.5 but it had never been at the required level in the last 13 months. While another participant wrote, "I am almost always in 2-3 range."
Writing on fluctuations in the INR level, a participant wrote "I have noticed that the first (test) of spring or fall - it tends to go up to high or down to low." Participants wrote about the effect of diet especially green salads, vegetables high in vitamin K and the wine on the INR level. Given frequent fluctuations and INR levels up to 4.6, one participant wrote, "I'm wondering if it wouldn't be a good idea to have a home testing machine."
In addition, participants wrote about oral anticoagulants dosage adjustment in the light of INR fluctuations. One of the participants was unable to determine how to adjust Warfarin dosage. On this situation, a participant wrote, "They (anticoagulation clinic) adjust the dosage if INR was high or low" and another suggested that, "Dosing is based on the lab results."
Communicating INR results
A participant wrote that, "My clinic calls me and reminds me to take my INR test the day before it is due". He further wrote that after performing a home test, "I call them (anticoagulation clinic) back with the results the following day." Another female patient with HVR wrote that she keeps her cardiologist's office updated with home PT/INR test results. While a participant wrote that, she informs her clinic about home test results only when the readings change so that they can adjust the dose. Regarding keeping a record of self-testing results, a participant wrote that she maintains a diary as a memento.
Interaction with healthcare providers
With regard to difficulty in communicating with doctors in managing and testing OAT, a participant suggested that patients do not deserve extreme stress and they can change the doctors if they are not communicating well. In addition, some of the participants wrote that they feel nervous when they have an appointment with their haematologist or doctor.
Patients exchanged views on the difficulty in interactions with insurance companies', especially in acquiring the self-testing equipment for themselves (patients). Some of the participants reported a long waiting time in getting a device through their insurance provider. A number of patients reported that their insurance covers purchase of a testing device and the test strip, which was however not universal but dependent on the patient's medical condition. However, some of the participants were not knowledgeable about this issue such as a patient with HVR asked, "Does your center promote the use of these (self-testing devices) for prosthetic valve patients? I was approved because of my valve."
Blogs participants discussed on some other issues such as their main illness and co-morbidities, anticoagulant drugs, social and psychological issues as follows.
Primary medical conditions and co-morbidities
Participants informed each other about the disease(s) that they had. A male participant wrote, "I have afib (Atrial fibrillation)." Another wrote, "I too am living with AFib." The same patient wrote, 'I am on Coumadin secondary to atrial fib/flutter and prosthetic valve." One of them wrote, "I had a Mechanical Mitral Valve implanted a couple of years ago." A male participant who went to a hospital due to back pain, which he described as nasty, wrote, "That's when I discovered my PE (pulmonary embolism)." A female participant wrote, "I'm glad I at least know what caused my DVT and how to manage it now/prevent another." Some of the participants had more than one disease as one of them wrote that she was hospitalised for a PE but also had liver and kidney problems.
Participants exchanged views on various types of anticoagulant drugs and their dosage. A patient having a PE wrote that the dose of her anticoagulation therapy had tripled in 3 months. While another participant said that, she had stopped taking an anticoagulant drug and her INR level dropped to 1.5, which according to her was below her therapeutic range of 2. Consequently, she was worried and asked other participants whether this fall in the INR was OK! One of the participants replied that the drug would not raise the INR but it would be better to talk to the doctor.
Given the possibility of being on anticoagulant therapy for life, a participant was frustrated and wrote, "I am on Warfarin (Coumadin) for life. Does it make some sense?" One of the participants replied that extra precautions were required while taking it. Another participant wrote that one of his friends had been taking this drug for the last ten years and monitoring the INR and had no problems; however, he cautioned that the drug needs close attention. One of them wrote that patients who are sensitive to the oral anticoagulants for example Warfarin, might be given other anticoagulants such as Heparin. In addition, a participant wrote that she has heard about a new drug in the market that requires less monitoring. The name of the new drug was however not reported.
Social and psychological issues
The participants raised a number of social and psychological issues. For example the pain, the stress, distress and disappointment that they faced during PT/INR self-testing, taking anticoagulant drugs, acquiring a coagulometer device, visiting an anticoagulation clinic/laboratory as well as communicating with their doctors, nurses, pharmacists and the insurance companies in relation to their anticoagulant therapy and its monitoring. A participant wrote that she felt her whole body was clotted after taking on oral anticoagulants. Another patient with PE wrote that sometimes she feels severe pain that makes her extremely nervous. A number of participants wrote that they can bear a finger pricking but they do not like needles for drawing their blood for INR testing.
Some participants showed their frustration with the possibility of taking OAT for life. A participant with PE was afraid and scared of a higher or lower level of his INR and wrote, "This has been a very scary experience no doubt!" A few of the participants with PE sometimes felt severe pain that made them extremely nervous; hence, they wanted to know more about the origin of the PE and the reasons behind the severe pain. One of them having PE and DVT wrote, "I've had some really weird and sharp pains. Not lasting very long though but it's quite scary."
Participants in blogs felt joy in sharing the experience and communicating with others bloggers. One of them wrote, "I am so glad to find this... and talk to others who have been through it. I have been solo for 2 years." In addition, they shared other social issues such as travelling abroad and the joy of visiting new places despite having health problems. They provided encouragement and advised each other to relax to avoid the stress, due to the illness, that might make the things worse. In addition, they appreciated each other such as a participant wrote, "Thanks for the advice and support."