Table 1.
Patient demographics and disease characteristics
| Participant characteristic | Qualitative interview population (N = 35) | Survey population (N = 76) |
|---|---|---|
| Age (years) | ||
| Mean (SD) | 45.1 (15.83) | 41.9 (13.24) |
| Median [Range] | 46.0 [19–74] | 40.5 [19–70] |
| Gender, n (%) | ||
| Male | 12 (34.3%) | 26 (34.2%) |
| Female | 23 (65.7%) | 50 (65.8%) |
| Ethnicity, n (%) | ||
| Hispanic or Latino | 1 (2.9%) | 4 (5.3%) |
| Not Hispanic or Latino | 34 (97.1%) | 72 (94.7%) |
| Racial Backgrounda, n (%) | ||
| American Indian or Alaska Native | 1 (2.9%) | |
| Asian | 1 (2.9%) | 2 (2.6%) |
| Black or African American | 3 (8.6%) | 11 (14.5%) |
| Native Hawaiian or Other Pacific Islander | 1 (2.9%) | |
| White | 28 (80.0%) | 63 (82.9%) |
| Other: specified “Biracial” | 1 (2.9%) | 1 (1.3%) |
| Missing | 1 (2.9%) | 1 (1.3%) |
| Employment Status, n (%) | ||
| Employed, full-time | 17 (48.6%) | 42 (55.3%) |
| Employed, part-time | 5 (14.3%) | 10 (13.2%) |
| Student | 3 (8.6%) | 5 (6.6%) |
| Retired | 5 (14.3%) | 3 (3.9%) |
| Disabled | 4 (11.4%) | 9 (11.8%) |
| Homemaker / Stay-at-home parent | 4 (5.3%) | |
| Unemployed | 5 (6.6%) | |
| Other | 2 (5.7%)b | 2 (2.6%)c |
| Highest Level of Education, n (%) | ||
| Secondary/high school | 11 (31.4%) | 4 (5.3%) |
| Some college | 8 (22.9%) | 12 (15.8%) |
| College degree | 13 (37.1%) | 46 (60.5%) |
| Postgraduate degree | 2 (5.7%) | 14 (18.4%) |
| Other: Specified “massage therapist; STNA [state tested nursing assistant]” | 1 (2.9%) | |
| Marital Status, n (%) | ||
| Single | 13 (37.1%) | 27 (35.5%) |
| Married | 13 (37.1%) | 34 (44.7%) |
| Divorced | 8 (22.9%) | 10 (13.2%) |
| Separated | 1 (1.3%) | |
| Widowed | 1 (2.9%) | 2 (2.6%) |
| Other | 2 (2.6%)d | |
| Clinical Characteristic | ||
| Time since diagnosis (years) | ||
| Mean (SD) | 11.9 (13.68) | 11.8 (11.76) |
| Median [Range] | 6.8 [0–58] | 7.5 [0–48] |
| Most Recent CRP score (mg/L) | ||
| Mean (SD) | 19.3 (32.69) | |
| Median [Range] | 7.1 [0–132] | |
| Unavailable | 13 (37.1%) | |
| Current Treatmenta, n (%) | ||
| Biologics | 56 (73.7%) | |
| Adalimumab | 7 (20.0%) | |
| Certolizumab | 3 (8.6%) | |
| Infliximab | 3 (8.6%) | |
| Ustekinumab | 6 (17.1%) | |
| Tofacitinib | 1 (2.9%) | |
| Vedolizumab | 4 (11.4%) | |
| Immunomodulators | 17 (22.4%) | |
| Azathioprine | 2 (5.7%) | |
| Mercaptopurine | 1 (2.9%) | |
| Corticosteroids | 14 (18.4%) | |
| Budesonide | 3 (8.6%) | |
| Prednisone | 5 (14.3%) | |
| Oral-aminosalicylates | ||
| Sulfasalazine | 2 (5.7%) | |
| Mesalamine | 8 (22.9%) | |
| Anti-diarrheal | ||
| Loperamide | 1 (2.9%) | |
| Other | 11 (14.5%)e | |
| Missing | 1 (1.3%) | |
| Comorbid Conditionsa, n (%) | ||
| No other conditions | 13 (37.1%) | 29 (38.2%) |
| Allergic rhinitis | 3 (8.6%) | 7 (9.2%) |
| Anemia | 2 (5.7%) | |
| Ankylosing spondylitis | 1 (1.3%) | |
| Anxiety | 4 (11.4%) | 5 (6.6%)f |
| Arthritis | ||
| Enteropathic arthritis | 1 (2.9%) | |
| Osteoarthritis | 3 (8.6%) | 1 (1.3%) |
| Rheumatoid arthritis | 1 (2.9%) | 6 (7.9%) |
| Asthma | 3 (8.6%) | 8 (10.5%) |
| Cancer | 1 (2.9%)g | |
| Celiac disease | 3 (3.9%) | |
| COPD | 1 (2.9%) | 1 (1.3%) |
| Depression | 4 (11.4%) | 19 (25.0%) |
| Diabetes (Type 2) | 2 (2.6%) | |
| GERD | 7 (20.0%) | |
| Hypertension | 8 (22.9%) | 12 (15.8%) |
| Multiple sclerosis | 1 (2.9%) | 1 (1.3%) |
| Psoriasis | 1 (2.9%) | 5 (6.6%) |
| Other autoimmune condition(s) | 4 (5.3%)h | |
| Other mental health condition(s)^ | 1 (1.3%)i | |
| Other health conditionsa | 9 (26.0%)j | 11 (14.5%)k |
| Missing | 2 (2.6%) | |
CDEIS Crohn’s Disease Endoscopic Index of Severity, COPD chronic obstructive pulmonary disease, CRP C-reactive protein, GAD generalized anxiety disorder, GERD gastroesophageal reflux disease, IIH idiopathic intracranial hypertension, Hep B Hepatitis B, MS multiple sclerosis, POTS postural orthostatic tachycardia syndrome, PTSD post-traumatic stress disorder, SD standard deviation
aResponses are not mutually exclusive
bSpecified employment responses (n = 1 each): “self-employed,” “unemployed – but have filed disability and am still battling in court at this time.”
cOther employment status specified by n = 1 each: “Short-term disability,” “Try to work and do some volunteering.”
dOther marital status specified by n = 1 each: “Divorced 19 years not married,” “Engaged.”
eOther treatment specified by n = 1 each except where specified otherwise: Mesalamine (n = 3), Medical marijuana/cannabis (n = 2), “A study medication,” Amitiza, Amitriptyline, Lialda, Pantoprazole, “Tacro.”
fAnxiety was not included as a response option in the questionnaire but as n = 5 participants wrote this in as an “other” response it has been specified in the table
gHistory of squamous cell on right calf
hOther autoimmune conditions specified by n = 1 each except where specified otherwise: Primary Sclerosing Cholangitis (n = 2), Hidradenitis suppurativa, “Liver issues,” Prurigo nodularis
iOther mental health conditions specified by the same n = 1 participant: PTSD and GAD
jOther health conditions reported in n = 1 participant each (not mutually exclusive): acid reflux, kidney stones, osteopenia, gastroesophagitis, irritable bowel syndrome (documented as well-controlled), neuropathy, fibromyalgia, obstructive sleep apnea, colon polyps, osteoporosis, chronic pain syndrome, “sleep disorder.”
kOther health conditions specified by n = 1 each except where specified otherwise: Fibromyalgia (n = 2), High cholesterol (n = 2), Ankylosis arthritis and scoliosis, fatty liver disease, GERD, Hep B (inactive now) and sleep apnea, hypothyroidism, IIH and POTS, leg lymphedema, Raynaud’s Syndrome