Introduction
Methods
Data Source
Data Qualification and Categorization
SPEC-R category | Subconcepts | Description |
---|---|---|
Social | Lack of independence | Help needed to groom oneself, run errands, bathe |
Relationships (family) | Pressure on family members; strained relationships with children | |
Relationships (partner/spouse) | Talking with spouse about AS; maintaining good partner relationship | |
Social life/activities | Going out with friends; staying in contact with friends | |
Relationships (friends) | Talking with friends about AS; maintaining friendships | |
Physical | Pain | General pain; headaches; muscle pain; musculoskeletal pain |
Asthenic | Asthenia; fatigue; sluggishness | |
Musculoskeletal | Spasms; muscle weakness; muscle tone; stiffness | |
Dermatologic | Rashes; itching; dryness | |
Movement/physical activity | Difficulty walking; gait disturbance; bedridden; driving | |
Gastrointestinal | Bloating; flatulence; nausea; vomiting | |
Ocular | Blurred vision; loss of vision; visual disturbances | |
Respiratory | Difficulty breathing; irregular breathing; anaphylaxis | |
Sleep | Sleep disturbance; insomnia; abnormal sleep patterns | |
Weight | Weight gain/loss; appetite disorders | |
Emotional | Anxiety | Nervousness; fear; panic attacks; phobic disorders |
Depression | Feeling low; negative outlook; depressed | |
Anger | Frustration; anger; aggressiveness; snappy | |
Sadness | Tearful; crying; feeling empty | |
Difficulty coping | Coming to terms; concern about the future | |
Suicidal and self-injurious behavior | Suicidal ideation; suicide attempts | |
Cognitive | Mental impairment | Trouble thinking; difficulty thinking; cognitive difficulties |
Impulsivity | Nail biting; impulse control; lost control; alcohol dependence; opiate addiction; withdrawal syndrome | |
Balance/coordination | Poor balance; unsteadiness; fainting; blackout; passed out | |
Memory | Forgetful; bad memory; short-term memory loss | |
Speech | Slurring; babbling; stuttering; difficulty speaking | |
Concentration | Short attention span; easily distracted; daydreaming; distractibility; hard to concentrate | |
Role activity | Work/school issues (performance affected) | Inability to perform normal work tasks; meet deadlines; achieve grades |
Work/school issues (unemployed/dropped out) | Being made redundant; not being able to find employment | |
Work/school issues (absenteeism) | Missing work/school; leaving work/school early; taking time off | |
Self-care | Getting dressed; looking after oneself | |
Parenting | Caring/looking after/supporting children | |
Economic circumstances | Economic instability; cannot afford treatment |
Results
Data Source and Patient Population
SPEC-R Analysis of Patient Narratives
Analysis of AS-Specific PRO Instruments
SPEC-R category | Top 3 reported subconcepts | % of total narratives | Covered in PRO instrument? | ||||
---|---|---|---|---|---|---|---|
ASAS-HI | ASQoL | BASDAI | BASFI | HAQ-S | |||
Social | Lack of independence | 1.2 |
–
|
✔
|
–
|
✔
|
✔
|
Family burden | 0.9 |
–
|
✔
|
–
|
–
|
–
| |
Relationships | 0.8 |
✔
|
–
|
–
|
–
|
–
| |
Physical | Pain | 65.3 |
✔
|
✔
|
✔
|
✔
|
✔
|
Asthenia | 19.9 |
✔
|
✔
|
✔
|
–
|
–
| |
Musculoskeletal impairment | 19.9 |
✔
|
–
|
✔
|
–
|
✔
| |
Emotional | Anxiety | 19.1 |
–
|
–
|
–
|
–
|
–
|
Depression | 9.9 |
✔
|
✔
|
–
|
–
|
–
| |
Anger/frustration | 5.4 |
✔
|
✔
|
–
|
–
|
–
| |
Cognitive | Mental impairment | 3.2 |
–
|
–
|
–
|
–
|
–
|
Impulsivity | 2.9 |
–
|
–
|
–
|
–
|
–
| |
Balance/coordination | 2.9 |
✔
|
–
|
–
|
–
|
✔
| |
Role activity | Performance at work/school | 3.0 |
–
|
–
|
–
|
–
|
✔
|
Unemployment/dropped out of school | 1.7 |
–
|
–
|
–
|
–
|
–
| |
Absence from work/school | 1.3 |
–
|
✔
|
–
|
–
|
–
|