Baseline characteristics of the study participants
The baseline characteristics of the 50 IBD patients who participated in the short survey and Q sorting are summarized in Table 1. A total of 50 patients with CD (n = 32) and UC (n = 18) visited the outpatient IBD clinic from February to March 2019 and participated in the study. The median patient age was 27 years (IQR, 22–34 years); 37.0% of them were male, 70% were unmarried, and CD patients showed a significantly higher unmarried rate (81.3% vs. 50.0%; P = 0.021). There were no significant differences between the CD and UC groups in the other baseline characteristics.
More than half of the subjects were highly educated (university graduation, 52.0%), while 38% were students. Most participants did not declare a religion (78.0%). Most had been diagnosed with IBD less than 1 year prior (60.0%). In addition, 56% of the patients had visited a mean 2 different clinics/hospitals before coming to our hospital; the treatment duration was generally 3–5 years (34.0%). This finding indicates that the treatment period is long but that the diagnosis is made relatively late. Most patients reported that their overall condition was relatively good (Table 1).
Formation and correlation of Q type
We evaluated the Q types of IBD patients for subjective phenomena. Four types accounted for 46.5% of the total variance: Types 1, 2, 3, and 4 showed 28%, 9.5%, 5%, and 4.1%, respectively. The first type explained the attitude of IBD patients about their care (Table 2). The correlations among the 4 types of IBD patients are summarized in Table 3. Moderate correlation was seen in the degree of similarity among types (r = 0.32–0.64), indicating that the types are relatively independent (Table 3).
Characteristics of the four subjective treatment need types
According to 34 Q statements (Table 4), four types of subjectivity regarding the treatment in IBD patients were classified. Tables 4 and 5 show the results of each type of analysis of the standard score (Z-score) of the representative statements. Higher factor weights indicate more typical characteristics of the type.
Type 1: Medial staff dependence type
A total of 20 patients (40%) were classified as type 1. Patients of this type tended to show strong beliefs and dependence on medical staff. There were 15 men (75.0%); the mean age was 25 years (IQR, 20–38 years). The percentage of highly educated individuals was lower than that of the other types (45.0% vs. 60.0% vs. 54.5% vs. 55.6%; P = 0.611). Compared to other types, the proportion of patients diagnosed within 1 year was higher (65% vs. 60% vs. 54.5% vs. 55.6 %; P = 0.385) (Supplementary Table 1).
Q statements with a Z-score greater than 1.0 included: “The professionalism of the medical staff is the expertise of the disease and the experience of the patient.”; “I would like to help people who have similar symptoms in the future be diagnosed quickly.”; “Staff should basically have an attitude of understanding and respond to the patient.”; “It is helpful to say that rare and incurable diseases are used to distinguish diseases and that there is no problem if you are managed well.”; “The medical staff is very valuable to my overcoming my situation and is more important than a family living together.”; and “I think I should take care of myself because my doctor always talks to me in a positive way.”
However, they most often disagreed with the following statements: “What is diagnosed and immediately educated is neither memorable nor helpful.”; “Nurses are for hospitals, not for patients.”; “I went to the hospital seminar only once or twice, but it does not help much.”; “When I go to a hospital seminar, it does not help because it seems like only the same attendees talk.”; and “It is not easy to meet medical staff working for patients.” (Table 5).
Common consent items for this type of patient are important for trust in the medical team and the belief that the condition will improve if the hospital provides treatment. They are encouraged by positive comments from the medical staff and strongly want to help treat patients with similar symptoms who have not been properly diagnosed but have received wrong folk remedies. Hospital seminars are also helpful because patients can meet people with similar symptoms while hearing various lectures.
Type 2: Relationship-oriented type
A total of 10 patients (20%) were classified as type 2. They value the professionalism of the medical staff, but they think they should be aware of the disease and know how to manage it themselves. They are also strongly burdened by the disease itself, the related pain, and the concerns of their family and neighbors. Patients of this type were 90% male and younger than those of other types (mean age, 24 years). Sixty percent of the patients of this type were the most highly educated, with college degrees (P = 0.611), and most were single (90.0%). Seventy percent of these patients had CD, and more patients from this group were diagnosed more than 3 years prior than the other types (type 1, 2, 3, and 4; 15.0% vs. 30.0% vs. 9.1% vs. 0%; P = 0.385). In addition, many patients tended to think that their overall condition was poor (type 1, 2, 3, and 4; 5.0% vs. 20% vs. 9.1% vs. 0%; P = 0.496) (Supplementary Table 1). This finding indicates that they are more likely to believe that they should manage the disease on their own, expecting to consult the medical staff as they experience various courses of the disease during the treatment period.
The Q statements with a Z-score > 1.0 include the following: “I want to know how to manage patients who have had long remission periods.”; “The professionalism of the medical staff is the expertise of the disease and the experience of the patient.”; “I do not want to make my family feel uncomfortable because of me.”; “Staff members should be understanding and responsive to patients.”; “People without a sick person in their family do not understand the pain.”; and “It is difficult to handle an unpredictable and difficult-to-treat disease.”
The patients most often disagreed with following statements: “It is helpful to say that rare and incurable diseases are used to distinguish diseases, and that there is no problem if you manage it well.”; “It was too difficult to find a specialist for IBD at nearby hospitals and local clinics.”; “Just do what the doctors tell you to do.”; “Nurses are for hospitals, not for patients.”; and “I found an IBD hospital on the internet.” (Table 5).
The patients with the highest factor weights were type 2 and said that those who did not experience the disease could not understand the pain and the family’s concerns; one stated that he did not want his family to feel uncomfortable because of him. He also said that people are not familiar with CD, which makes it difficult for him to obtain the time and financial means required to obtain proper treatment.
Type 3: Information-driven type
A total of 11 patients (22%) were classified as type 3. Rather than being affected by the experiences or circumstances of other patients, they want to be provided with information and health care that is helpful to them. Compared to other types, they strongly value the need for clinicians to answer questions when they need them. However, they have a strong desire to know about their disease and how to manage a worsening situation. This group was composed of a higher rate of married people than the other types (type 1, 2, 3, and 4; 35% vs. 10% vs. 45.5% vs. 22.2%; P = 0.301). CD, which can show various disease courses and complications, was seen in 80% of affected patients, who made many hospital visits before being diagnosed (Supplementary Table 1).
The Q statements with a Z-score > 1.0 included: “The professionalism of the medical staff is the expertise of the disease and the experience of the patient.”; “I would like to help people who have similar symptoms in the future be diagnosed quickly.”; “I should understand my disease and find ways to manage it.”; “To maintain an ordinary life, we must constantly fight ourselves.”; “It was too difficult to find a specialist for IBD at a nearby hospital or clinic.”; “I would like to have access to a medical staff member who can answer my questions when I have them.”; and “Staff members should be understanding and responsive to patients.”
The patients most often disagreed with the following statements; “The medical staff is a very valuable person in overcoming my situation and more important than a family member.”; “Stories of people with similar experiences are comforting.”; “When I go to a hospital seminar, it does not help because it seems like the same attendees talk.”; “Knowledge of the disease does not help.”; and “What is diagnosed and immediately educated is neither memorable nor helpful.” (Table 5).
Commonly mentioned statements of this type of patient were the importance of medical professionalism and disease knowledge as well as the importance of knowing themselves. Most patients of this type said in the survey that they wanted to find good information, understand their disease, and find ways to manage it.
Type 4: Social awareness type
A total of 9 patients (18%) were classified as type 4, a type that calls for changes in the reality and social awareness that require not only basic medical expertise but also efficient access to specialized hospitals and medical staff. These patients value knowledge, education, and seminars and think that nurses should be the people who actively care for affected patients. Of the four types, the average age was the highest (type 1, 2, 3, and 4; 25 years vs. 24 years vs. 28 years vs. 31 years; P = 0.559), and participants had the highest employment rate. In addition, patients who had been treated for more than 10 years accounted for 33% of this type (type 1, 2, 3, and 4; 0% vs. 20% vs. 18.2% vs. 33.3%; P = 0.584) (Supplementary Table 1).
The Q statements with a Z-score > 1.0 included: “The professionalism of the medical staff is the expertise of the disease and the experience of the patient.”; “It was too difficult to find a specialist for IBD at a nearby hospital or clinic.”; “Social awareness of rare diseases should change.”; and “Staff members should be understanding and responsive to patients.”
However, they most often disagreed with the following statements: “Knowledge of the disease does not help.”; “I went to the hospital seminar only once or twice, but it does not help much.”; “If I ask the nurse any questions, he or she says I should talk to a doctor.”; “I found an IBD hospital on the internet.”; and “Nurses work for hospitals, not for patients.” (Table 5).
Some patients had a hard time understanding their exact diagnosis and mentioned that local hospitals and clinics are not well aware of the disease and that it is difficult to find professional medical staff. Another patient emphasized the need for people’s consideration of and attention to IBD patients due to changes in social awareness. Some also said that they received better information through seminars with medical staff since there was a lot of wrong information on the internet.
Consensus between views
The four commonly agreed statements of subjectivity in relation to disease-related attitudes in IBD patients are: “The professionalism of the medical staff is the expertise of the disease and the experience of the patient”; and “Staff members should be understanding and responsive to patients.”. However, all types of patients disagreed with the following statement: “Knowledge of the disease does not help.”