Background
Term | MAPP Network Research Definition |
---|---|
Urologic chronic pelvic pain syndrome (UCPPS) | General term to describe idiopathic chronic pelvic pain of urologic origin in men or women. In MAPP Network studies, this includes men and women with IC/BPS, or men with CP/CPPS (see below). |
Interstitial cystitis/bladder pain syndrome (IC/BPS) | Chronic unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms, in the absence of infection or other identifiable causes. |
Chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) | Chronic idiopathic pelvic pain or discomfort in males, commonly in the perineum, suprapubic region, penis, or testicles, which is often exacerbated by ejaculation or urination. |
Non-Urologic Associated Syndromes (NUAS) | General term used to describe symptom-based non-urologic syndromes which co-occur with UCPPS at a rate greater than observed in the general population. Within the MAPP Network, initial efforts have focused on studying specific NUAS (fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome), though other examples exist (e.g. vulvodynia, temperomandibular joint disorder, and migraine headaches, among others). |
Methods/design
Scientific focus
MAPP network organization
MAPP network core functions
Quantitative Sensory Testing (QST)
Neuroimaging and functional neurobiology
Biomarker and infectious etiology studies
Cohorts | No. of participants by cohort | No. of participants with biospecimens | No. of participants with MRI scans | No. of Participants with Pain Pressure Threshold (PPT) measures | |||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Target size | Actual enrolled | Cheek swab | Biomarker samples | Infectious etiology urine samples | At baseline | During follow-up | |||||
Plasma | Urine | VB1 | VB2 | VB3 | |||||||
UCPPS (Duration of symptoms)
| |||||||||||
Male < 2 Yrs
| 95 | 90 | 90 | 90 | 90 | 90 | 90 | 39 | 13 | 19 | 20 |
Male ≥ Yrs
| 95 | 101 | 100 | 100 | 101 | 100 | 100 | 42 | 22 | 12 | 20 |
Female < 2 Yrs
| 95 | 89 | 89 | 86 | 89 | 89 | 88 | 0 | 22 | 20 | 19 |
Female ≥2 Yrs
| 95 | 144 | 144 | 142 | 144 | 142 | 139 | 0 | 41 | 11 | 23 |
Total
|
380
|
424
|
423
|
418
|
424
|
421
|
417
|
81
|
98
|
62
|
82
|
Healthy controls
| |||||||||||
Male
| 190 | 182 | 182 | 177 | 181 | 176 | 174 | 64 | 38 | 40 | 0 |
Female
| 190 | 233 | 233 | 228 | 232 | 232 | 227 | 0 | 79 | 60 | 0 |
Total
|
380
|
415
|
415
|
405
|
413
|
408
|
401
|
64
|
117
|
100
|
0
|
Positive controls
| |||||||||||
Male
| 95 | 44 | 44 | 43 | 43 | 43 | 43 | 10 | 17 | 8 | 0 |
Female
| 95 | 156 | 156 | 154 | 154 | 154 | 152 | 0 | 47 | 27 | 0 |
Total
|
190
|
200
|
200
|
197
|
197
|
197
|
195
|
10
|
64
|
35
|
0
|
Overall total
|
950
|
1,039
|
1,038
|
1,020
|
1,034
|
1,026
|
1,013
|
155
|
279
|
197
|
82
|
Flare assessment in UCPPS
Baseline self-report battery characterizing UCPPS and controls
General socio-demographic and medical history
Urological specific measures
Symptom and health care utilization Questionnaire (SYM-Q)
Interstitial Cystitis Symptom Index (ICSI) and problem index (ICPI) (ICINDEX)
American Urological Association Symptom Index (AUASI)
Brief Flare Risk Factor Questionnaire (BFRFQ)
Rand Interstitial Cystitis Epidemiology (RICE) case definition
Genitourinary Pain Index (GUPI)
Female Sexual Function Index (FSFI)
International Index of Erectile Function (IIEF)
Washington Male sexual function scale (MSFS)
Self-Esteem And Relationship questionnaire (SEAR: M & F)
Instrument | Subscales |
---|---|
Symptom and Health Care Utilization Questionnaire (SYM-Q) | 1. Pain, urgency, frequency |
2. Urologic/Pelvic Pain severity | |
3. Non-urologic/Pelvic Pain severity | |
4. Mood | |
5. Most bothersome symptom | |
6. Medical care seeking | |
7. Menstrual information | |
8. Flare status | |
Interstitial cystitis symptom and problem index | 1. IC Symptom Index (ICSI) |
2. IC Problem Index (ICPI) | |
American Urological Association Symptom Index Score | 1. AUASI total score |
Rice case definition questionnaire | 1. RICE total score |
Brief flare risk factor questionnaire | 1. Flare timing, symptoms, and symptom severity |
2. Cause attribution | |
3. Foods | |
4. Drinks | |
5. Physical and sedentary activities | |
6. Stress | |
7. Sexual activity | |
8. Infections | |
Genitourinary Pain Scale (GUPI) | 1. Pain |
Male version | 2. Urinary symptoms |
Female version | 3. Quality of life |
4. Total | |
Female sexual function index | 1. FSFI total score |
International index of erectile function | 1. IIEF total score |
University of Washington male sexual function scale | 1. Pain with ejaculation |
2. Premature ejaculation | |
3. Difficulty reaching ejaculation | |
Self-esteem and relationship questionnaire | 1. SEAR total score |
Males | |
Females |
Non-urologic co-occurring symptoms and diagnostics
History of co-occurring somatic symptoms
Clinical pain
Functional status
Fatigue and sleep disturbance
Cognitive difficulties
Stress
Emotional distress
Personality traits
Catastrophizing
Locus of control
Early life trauma history
Instrument | Subscales |
---|---|
Complex Multi-Symptom Inventory (CMSI) (Diagnostics of co-morbid functional disorders and overall symptom burden) | 1. Fibromyalgia |
2. Chronic fatigue syndrome | |
3. Irritable bowel syndrome | |
4. Vulvadynia | |
5. Migraine | |
6. Temporomandibular disorders | |
7. Past year total symptom burden | |
Brief Pain Inventory (BPI) (General clinical pain) | 1. Severity |
2. Interference | |
3. Medications | |
4. Relief from medications | |
5. Body map: overall | |
6. Body map: male genital | |
7. Body map: female genital | |
Short Form-12 (Functional status) | 1. Physical status |
2. Physical role status | |
3. Bodily pain | |
4. General health | |
5. Energy/vitality | |
6. Social functioning | |
7. Mental health | |
8. Role limitations (emotional) | |
9. Composite physical (PCS) | |
10. Composite mental health (MCS) | |
PROMIS: Fatigue | 1. Total score (t-score) |
PROMIS: Sleep disturbance | 1. Total score (t-score) |
Multiple Abilities Self-Report Questionnaire (MASQ) (Perceived cognitive problems) | 1. Language ability |
2. Visio-spatial ability | |
3. Verbal memory | |
4. Visual memory | |
5. Attention/concentration | |
Perceived Stress Scale (PSS) | 1. Total score |
Hospital Anxiety and Depression Scale | 1. Depressive symptoms (HADS:D) |
2. Anxiety Symptoms (HADS:A) | |
PROMIS: Anger | 1. Total score (t-score) |
Positive and Negative Affect Scale (PANAS) | 1. Positive affect |
2. Negative affect | |
3. Affect balance | |
International Personality Item Pool (IPIP) | 1. Neuroticism |
2. Extroversion | |
3. Agreeableness | |
4. Conscientiousness | |
5. Openness to experience | |
Coping Strategies Questionnaire (Catastrophizing scale) | 1. Cat score |
Beliefs in Pain Control Questionnaire (BPCQ) | 1. Internal locus of control |
2. Powerful doctors (external locus) | |
3. Chance (external locus) | |
Childhood Traumatic Events Scale (CTES) Recent Traumatic Events Scale (RTES) | 1. Age of each trauma |
2. Intensity of each trauma | |
3. Confiding in others for each trauma |