Impact of findings on practice statements
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Despite being adherent to the treatment, CML patients in Taiwan lack sufficient knowledge of disease progression, therapeutic effects, symptoms and management of side effects.
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Adverse drug effects and associated polypharmacy are the key concerns that impact on patients’ adherence and alter their medicine-taking approach to maintaining long-term use of imatinib.
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Healthcare professionals can help improve adherence and patient care by offering patients information on interpreting clinical indicators, symptoms of adverse effects and strategies to manage adverse effects.
Introduction
Aim of the study
Methods
Study design and setting
Participants
Data collection
Data analysis
Results
Participants’ characteristics
Characteristic | Category | Number (%) |
---|---|---|
Gender | Male | 23 (54.8) |
Female | 19 (45.2) | |
Agea
| Over 50 | 22 (52.4) |
Under 50 | 20 (47.6) | |
Employment status | Employed | 25 (59.5) |
Unemployed | 1 (2.4) | |
Housekeeper | 6 (14.3) | |
Retired | 9 (21.4) | |
Student | 1 (2.4) | |
Marriage status | Single | 12 (28.6) |
Married | 25 (59.5) | |
Widowed | 3 (7.1) | |
Divorce | 2 (4.8) | |
Use of imatinib for more than 18 months | 36 (85.7) | |
Imatinib utilisation | Prescription interruptionc
| 12 (28.6) |
PPR more than 90 %d
| 38 (90.5) | |
Disease phase at diagnosis | Chronic phase | 35 (83.3) |
Accelerated or blast phase | 7 (16.7) | |
Experience of progressionb
| 13 (31.0) | |
Treatment effect | CCyR at the 18th monthe
| 36 (90.0) |
MMR at the 18th monthf
| 33 (84.6) |
Acceptance of current disease and health status
Most participants regarded CML as a ‘chronic disease’ and hoped to maintain a stable control of the disease in the long term. They were satisfied with improvement in disease-related fatigue after receiving imatinib treatment and hence being able to maintain body functions and carry out daily activities (e.g. returning to work, sharing family child-care and housekeeping responsibilities) and relieve burden from carers.“As time passed, I have learned and understood all the conditions. Psychologically, I don’t feel myself different from other people. So far, it (the disease) is well controlled, no unexpected situation, just have to take medicines every day.” [A07]
However, those who were seeking employment or holding future career plans still felt unproductive and oppressed as they were conscious of their limited life expectancy and the interruptions in their daily routine as a consequence of regular outpatient visits. One of the main concerns for participants was the disability and financial burden due to the deterioration of the disease.“I exercise a lot and keep a normal health condition. My wife is at work, I am the ‘house husband’ and I have being keeping myself very busy. I just came to pick up my medicines this morning, but the nurse insisted that I need to have a regular check, that’s strange, I can’t see why it’s necessary.” [A15]
“Our company is conducting several big projects overseas, such as the manufacture in Vietnam; I have to decline the project because I have my regular appointments.” [A06]
Misconceptions about disease progression
Some participants expressed that ‘no bad cell’ or ‘no Philadelphia chromosome’ represents a controlled disease condition after bone marrow biopsy. In addition, recurrent lesions gene (BCR-ABL transcript) tested by polymerase chain reaction (PCR) was seen as the sign of relapse by some participants, although the rising levels may merely indicate a loss of molecular response to treatment [33]. Even some participants who achieved complete molecular remission misunderstood that CML has an ‘incubation period’ and thought their condition was only temporarily under control.“It (the white cell) grows very quickly and the number multiplies in hundreds of thousands, if treatment can’t catch up (to kill cancer cells), then the quicker it grows, the faster the caner spreads.” [A09]
Bleeding was perceived to be the most commonly mentioned disease-related symptom, and participants generally avoided cuts and were cautious about wound-related bleeding and infections. Participants often had the misconception that blood loss via blood test or bleeding wounds might weaken their immune system, and increase susceptibility to ailments (such as the common cold). Being anxious about disease progression, participants were prone to react to the symptoms, which then led to frequent visits to emergency rooms or higher tier of medical facilities (e.g. medical centre).“The doctor said my current condition is good because the molecular and haematology tests are beyond the scale. However, it doesn’t mean I have no ‘bad cell’, that’s the limitations of the tests. I did have a bone marrow test before, but not in the past two years. I hope I can have a bone marrow test, it’s more accurate.” [A11]
“If I got a cut, I used to recover within a day or two, but since I took this medicine, oh my God even with a minor cut, I have to visit surgeon and get both pills and ointment! Sometimes, I get antibiotic injections, three continuous injections to get rid of the germs (to avoid cellulitis), I am so scared!” [A31]
Factors associated with adherence to imatinib
Although participants were generally adherent to imatinib treatment, their concerns about the potential ‘resistance’ also influenced their medication behaviours. Participants were aware that long-term imatinib treatments could lead to resistance, but they had adopted the concept of anti-microbial resistance mechanism and believed that interrupting or changing medications would result in resistance to imatinib. In contrast to other chronic conditions, we found that participants seldom used traditional Chinese medicine or herbal medicine due to the concern that drug–drug or drug-food interactions might reduce the efficacy of imatinib.“I used to have interferon, but this (imatinib) tiny tablet is much better, as you can’t have interferon injections for ten years!… However, this long-term medicine is for chronic disease, a two-week schedule just passes too quickly, we should be allowed to have a long-term drug supply and only come to visit the doctor when we don’t feel right.” [A15]
“I feel resistance could happen after long-term use of drugs. I don’t have any medical concepts, but similar to ‘viruses’, virus resistance develops after long-term use of drugs, if we don’t take the drugs appropriately.” [A22]
Concerns and management of adverse drug effects
“The problems appeared one by one after different tests, and it was only until recently I realised they are the side effects of drugs.” [A05]
Imatinib-related adverse effects were the most common reason for participants altering their treatment. To cope with the adverse effects, participants either reduced the dose of imatinib or adopted other approaches such as taking imatinib with or soon after a meal to reduce uncomfortable nausea or vomiting, or to take imatinib before bedtime rather than in the morning to avoid the uncomfortable vertigo (which often occurs half to two hours after imatinib intake).“…However, we worry the long-term use of Western medicine will damage liver or kidney, some doctors would test it (liver or kidney functions) but some won’t. How supposedly should we know whether to test it or not? But we definitely worry about it.” [A03]
In addition to imatinib-related adverse events, it was found that detrimental impacts associated with ‘polypharmacy’ for managing imatinib-related adverse events also worried participants. Most symptoms commonly raised by participants (e.g. oedema, nausea, vomiting, diarrhoea, insomnia, muscle pain, muscle cramps, poor appetite, itch and rash) are generally mild and can be managed by other oral medicines. However, some participants doubted whether long-term intake of the ‘rescue medicines’ for relieving the imatinib-related side effects was necessary, and worried about other possible adverse effects associated with taking too many rescue medicines, e.g. diuretics-related nocturnal frequency and nephrotoxicity, zolpidem-related sleepwalk and non-steroidal anti-inflammatory drugs related stomach upsets.“I changed to take the medicine before bed-time or after a meal. If I take it with an empty stomach, I will definitely vomit it out in ten minutes.” [A18]
“The doctor prescribed a (diuretic) tablet once a day for me, but I only took half of it per day, because I worry long-term use of it will damage my kidney.” [A02]