4.1. Categories
Nine individuals consented to be interviewed. The content analysis revealed eight main categories related to patient adherence with PROs (Table 3). The eight categories and eight subcategories could be classified into five facilitators and five barriers, with two categories overlapping between them.
Table 3
The lists of four problems related to sustainable self-management and three interventions to solve these problems
Categories | Subcategories |
Adopting a healthier lifestyle | |
Perceiving the benefits of PRO recording | Improved communication with health care providers |
Self-management |
Cumbersome nature | |
Unnecessary exercise | |
Anxiety generated by recording | Desiring communication with the physician |
Fear of cancer recurrence |
Lack of suitable format | |
Relationship between physicians and patients | Having a trustful relationship with the physician |
Poor relationship with physicians |
Understanding functions and benefits of PRO recording | |
4.2. Adapting a healthier lifestyle
Many patients with cancer were committed to adopting good habits for their health” following their cancer diagnosis. Many tried to eat healthier, exercise more, and pay more attention to changes in their physical condition. Many patients are provided with notebooks by the hospital to record their PROs during chemotherapy; however, most preferred to record changes in their PROs in their own notebooks before and during chemotherapy.
“After my cancer diagnosis, I became more aware of changes in my physical condition and more attentive to my health than I had been before I was diagnosed. I keep taking care of changes in my physical condition and do stretches and massages.” (P2)
“I became more attentive to changes in my physical health after my cancer diagnosis. I meditate and try to listen to my body. I try to record any changes in my physical condition that I feel.” (P8)
4.3. Perceiving the benefits of PRO recording
Patients with high PRO adherence perceive benefits from recording them. There are two subcategories of benefits in this category. The first subcategory is improved communication with healthcare providers. Based on the PROs while out of the hospital, patients were able to explain their condition in detail to the healthcare provider. PROs can remind patients what they wanted to ask or what they intended to inform their healthcare providers. Patients indicated that using PROs while talking to healthcare providers ensured that patients were less likely to omit or forget a discussion point.
“Since I have to see the doctor every three weeks, I wouldn’t be able to remember what happened during that time if I didn’t have the records. It gives me peace of mind knowing that the doctor who looked at my records knows I’m okay.” (P3)
“When I went to the hospital because of an upset stomach, it was easy to tell the doctor when the laxative was changed by looking at the records.” (P4)
“I always show my records to the doctor so that I don’t forget to tell him what happened.” (P6)
The second subcategory is self-management. In the case of concerning symptoms during chemotherapy, patients may check the record of a previous course to determine whether their symptoms are normal. Further, the records include information about medications; patients can thus consider whether any new symptoms are influenced by newly started medications.
“If I feel something is wrong with my health, I look at my previous record. I think records are important.” (P5)
“I understand the cycle of physical changes caused by the side effects of chemotherapy.” (P8)
4.4. Cumbersome nature
Regardless of whether they record PROs, most patients find it “cumbersome” to maintain their PROs. Even patients with high PRO adherence reported that they sometimes forget to record their PROs when they are feeling very well or very sick.
“I am too lazy to continue.” (P1)
“I think I will forget when I resume work.” (P2)
“I forget when I’m feeling relatively well and very sick.” (P3)
“It’s a hassle.” (P4)
“I recorded some information at the beginning of treatment, but it became tedious and I stopped.” (P6)
“I was given a notebook to record PROs, but I don’t keep it. It is clearly a hassle.” (P9)
4.5. Unnecessary exercise
Patients who do not record their PROs feel that recording them is unnecessary. If do not find any benefit in recording PROs, they feel that the exercise is not worthwhile.
“I never looked back and felt it was necessary.” (P6)
“Side effects are always the same and I remember them myself, so I don’t need them.” (P9)
4.6. Anxiety generated by recording
Most patients feel anxious about exacerbation or recurrence of their disease while recording their symptoms. This anxiety can be classified into two subcategories. The first subcategory involves the desire to communicate with physicians. When a patient feels anxious about their symptoms while recording PROs, they try to communicate the symptoms to their physician. This subcategory is a facilitator of PRO adherence.
“Whenever there is a change in my condition, I worry that I think it might be because I am relapsing. I think I need to tell my doctor about the symptoms I am concerned about. That is why I will record my symptoms.” (P3).
The second subcategory is fear of cancer recurrence. When a patient feels anxious about their symptoms, they stop recording PROs because want to avoid this anxiety. This subcategory is a barrier to PRO adherence.
“It is better to stay positive. I don’t want it to be stressful. I think it’s stressful to record PROs when I’m not doing well.” (P9)
4.7. Lack of suitable format
Patients who exhibit high adherence with recording PROs on forms handed to them at hospitals and other institutions are stressed by their uniform format. For example, the remarks column is small, the column to record the symptoms that doesn’t appear to the patient is disturbing, and it is difficult to rate the intensity of symptoms on a scale of 1 to 10. For this reason, in addition to the notebook handed to them at the hospital, some patients prefer to write freely in a diary or blog.
“With a notebook, space is limited.” (P2)
“The remarks column is too small.” (P4, 8)
“I would like to have space to write down oral medications.” (P7)
4.8. Relationships between physicians and patients
This category contains two contradicting subcategories. The first is having a trustful relationship with the physician. When the relationship between physicians and patients is trustful, patients adhere to the treatment and lifestyle recommended by their physicians and adopt a proactive approach toward their treatment. A virtuous cycle ensues when patients continue to record PROs although they consider it cumbersome. They perceive benefits, such as improved communication and self-management, which further encourages them to continue to maintain records. This subcategory is considered a facilitator.
“I can have a casual conversation with my doctor, such as ‘Did you go on a trip?’. When I was struggling with my diet, my doctor arranged for me to receive nutritional guidance…I keep recording my symptoms because my doctor checks them.” (P5)
“My doctor is a very good doctor. He suggested me to increase my enjoyment, and I consciously increased the number of things I enjoy and reported them. Not only did he talk to me about my illness, but he also improved my environment, including my long-term care insurance, and I was able to discuss everything with him…I keep recording my symptoms because my doctor told me to do so.” (P8)
The second subcategory is poor relationship with the physician. Under these circumstances, even if the PRO record is recommended, the patient will not record it because they think it is cumbersome and unnecessary. This results in no change in communication with the physician, lack of a trustful relationship, and, in some cases, the patient takes no active role in the treatment and often seeks a second opinion. This subcategory is considered a barrier.
“Frequent changes of doctors are stressful. Some doctors are businesslike in their attitude and I cannot communicate with them. I am thinking of going for a second opinion. I recorded some information at the beginning of treatment, but it became tedious and I stopped.” (P6)
“I don’t even know who my doctor is. I was given a notebook to record PROs, but I don’t keep it. It is clearly a hassle.” (P9)
4.9. Understanding functions and benefits of PRO recording
This category has two subcategories. The first subcategory is an additional benefit of recording PROs. Patients who do not routinely record their PROs indicate that they might do so if it had a function beyond simply recording them. For example, patients would like to be alerted when their recorded PRO requires medical attention or self-care. As discussed above, many patients feel anxious when recording their PROs. They are reassured when a medical decision about their symptoms is immediately available after recording their PROs. This subcategory is considered a facilitator.
“If it had an alert feature that told me ‘This is unusual’, I might record a PRO.” (P6)
“When symptoms are severe, it is difficult to know how to get better even if I only record the symptoms. I would like you to suggest self-care.” (P8)
The second subcategory is awareness of the benefits. It is difficult for patients to imagine how recording their PROs improves their QOL or prolongs overall survival. In fact, many patients may be willing to record PROs if it improves their prognosis. This subcategory is also considered a facilitator.
“I would record it if it would help me recover faster.” (P1)