Background
Materials and methods
Development of the first version of the rating reference guide
Modification of the guide—stage 1: first interrater reliability study
Modification of the guide—stage 2: revision of the reference guide
Modification of the guide—stage 3: second interrater reliability study
Data analysis
Results
Development of the first version of the rating reference guide
What aspect should be scored | What is the complete problem | |||
---|---|---|---|---|
b130 | Energy and drive functions | ・The extent of the problem | May include: Having no motivation or appetite at any time | |
・The frequency of the problem | ||||
b134 | Sleep functions | ・The extent of the problem | May include: Incapable of sleep at all, or the sleeping schedule has collapsed | |
・The frequency of the problem | ||||
b152 | Emotional functions | ・The extent of the problem | May include: Complete loss of control of emotions every day, or incapable of expressing emotions | |
・The frequency of the problem | ||||
b280 | Sensation of pain | ・The extent of the problem | May include: Suffering from continuous intolerable pain at any time | |
・The frequency of the problem | ||||
b455 | Exercise tolerance functions | ・The extent of the problem | May include: Incapable of bearing any single activity of daily living at any time due to cardiorespiratory problems | |
・The frequency of the problem | ||||
b620 | Urination functions | ・The extent of the problem | May include: Complete urinary retention or continuous incontinence at any time | |
・The frequency of the problem | ||||
b640 | Sexual functions | ・The extent of the problem | May include: Having no mental and/or physical ability to perform sexual activity, or complete loss of control in sexual desire at any time | |
・The frequency of the problem | ||||
b710 | Mobility of joint functions | ・The extent of the problem | May include: Complete joint contracture in all major joints | |
・The ratio of the joint with the problem | ||||
b730 | Muscle power functions | ・The extent of the problem | May include: Complete loss of muscle power in all major muscles | |
・The ratio of the joint with the problem | ||||
Ratings | (Note that the rating should reflect the body function without the help of devices) | |||
0 | No problem | |||
1 | Mild problem | |||
2 | Moderate problem | |||
3 | Severe problem | |||
4 | Complete problem | |||
8 | Not specified | |||
9 | Not applicable |
What to rate in each category
How to frame the response options
Modification of the guide—stage 1: first interrater reliability study
Categories | Weighted κ | 95% CI | Missing values | |
---|---|---|---|---|
b130 | Energy and drive functions | 0.56 | 0.35–0.77 | 0 |
b134 | Sleep functions | 0.62 | 0.45–0.77 | 0 |
b152 | Emotional functions | 0.25 | 0.01–0.49 | 0 |
b280 | Sensation of pain | 0.44 | 0.27–0.62 | 1 (1.7%) |
b455 | Exercise tolerance functions | 0.55 | 0.39–0.71 | 0 |
b620 | Urination functions | 0.92 | 0.83–1.01 | 0 |
b640 | Sexual functions | 0.80 | 0.53–1.07 | 41 (68.3%) |
b710 | Mobility of joint functions | 0.58 | 0.41–0.74 | 0 |
b730 | Muscle power functions | 0.65 | 0.51–0.79 | 0 |
Modification of the guide—stage 2: revision of the reference guide
Category | Aspect to be scored | Description of each response option (The percentage describes the severity of the problem, if 100% means it is a complete problem. The rating should reflect the body’s function without the help of devices) | |
---|---|---|---|
b130 | Energy and drive functions | Extent and frequency of the problem, such as loss of motivation or appetite | 0: No problem |
1: Mild problem: May include problems with energy and drive functions that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem in energy and drive functions that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) in energy and drive functions | |||
4: Complete problem: May include a complete problem with energy and drive functions, such as having no motivation or appetite at any time | |||
b134 | Sleep functions | Extent and frequency of the problem, such as shortage of sleep or irregular sleep schedules | 0: No problem |
1: Mild problem: May include problems with sleep that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with sleep that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with sleep | |||
Complete problem: May include a complete problem with sleep, such as being incapable of sleeping, or a complete day–night reversal every day | |||
b152 | Emotional functions | Extent and frequency of the problem, such as loss of emotional control or lack of emotional expression | 0: No problem |
1: Mild problem: May include problems with emotions that do not affect the patient's daily activities | |||
2: Moderate problem: May include problems with emotions that exceed 1, but remains relatively minor (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with emotions | |||
4: Complete problem: May include a complete problem with emotions, such as complete loss of control of emotions, or being incapable of expressing emotions at any time | |||
b280 | Sensation of pain | Extent, frequency, and number of sites with pain | 0: No problem |
1: Mild problem: May include problems with sensations of pain, but does not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with sensations of pain that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with sensations of pain | |||
4: Complete problem: May include a complete problem with sensations of pain, such as continuous, intolerable pain | |||
b455 | Exercise tolerance functions | Extent and frequency of the problem, such as decline in respiratory and cardiovascular capacity that is required to perform daily activities | 0: No problem |
1: Mild problem: May include problems with exercise tolerance that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with exercise tolerance that exceeds Level 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with exercise tolerance | |||
4: Complete problem: May include a complete problem with exercise tolerance, such as being incapable of bearing any single activity of daily living at any time due to cardiorespiratory problems | |||
b620 | Urination functions | Extent and frequency of the problem, such as difficulty urinating or urinary incontinence | 0: No problem |
1: Mild problem: May include problems with urination that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with urination that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with urination | |||
4: Complete problem: May include a complete problem with urination, such as complete urinary retention or continuous incontinence at any time | |||
b640 | Sexual functions | Extent and frequency of the problem, such as loss of sexual desire and/or physical ability to engage in sexual activity | 0: No problem |
1: Mild problem: May include problems with sexual functions that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with sexual functions that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with sexual functions | |||
4: Complete problem: May include a complete problem with sexual functions, such as a complete loss of sexual desire and/or physical ability to engage in sexual activity at any time | |||
b710 | Mobility of joint functions | Extent of the problem, such as joint contracture, or limitations in range of motion and percentage of joints with mobility problems | 0: No problem |
1: Mild problem: May include problems with joint mobility functions that do not affect the patient's daily activities | |||
2: Moderate problem: May include problems with joint mobility that exceed 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with joint mobility | |||
4: Complete problem: May include a complete problem with joint mobility, such as complete joint contracture in all of the major joints | |||
b730 | Muscle power functions | Extent of the problem, and percentage of joints with muscle power problems | 0: No problem |
1: Mild problem: May include problems with muscle power that do not affect the patient's daily activities | |||
2: Moderate problem: May include a problem with muscle power functions that exceeds 1, but remains a relatively minor problem (< 50%) | |||
3: Severe problem: May include a major problem (≧ 50%) with muscle power | |||
4: Complete problem: May include a complete problem with muscle power, such as a complete loss of muscle power in all of the major muscles |
Modification of the guide—stage 3: second interrater reliability study
Categories | Weighted κ | 95%CI | Relative improvement | Missing values | |
---|---|---|---|---|---|
b130 | Energy and drive functions | 0.78 | 0.69–0.87 | 39.8% | 0 |
b134 | Sleep functions | 0.65 | 0.49–0.87 | 4.2% | 0 |
b152 | Emotional functions | 0.66 | 0.54–0.78 | 168.8% | 0 |
b280 | Sensation of pain | 0.71 | 0.62–0.81 | 60.7% | 1 (0.8%) |
b455 | Exercise tolerance functions | 0.60 | 0.50–0.70 | 9.1% | 0 |
b620 | Urination functions | 0.72 | 0.62–0.81 | -22.4% | 2 (1.6%) |
b640 | Sexual functions | 0.53 | 0.32–0.73 | -34.4% | 51 (41.5%) |
b710 | Mobility of joint functions | 0.65 | 0.55–0.75 | 13.0% | 0 |
b730 | Muscle power functions | 0.74 | 0.66–0.82 | 13.4% | 0 |