| Literature DB >> 34409339 |
Donna McLean1, Olivia McBride1, Tanja Samardzic2, Mia Sisic1,3, Robert P Dellavalle4,5,6, Jerry Tan1,3,7.
Abstract
BACKGROUND: Patient decision aids are tools that facilitate shared decision making when clinical evidence and patient values and preferences inform the process. Evidence-based guidelines have been developed for clinicians in hidradenitis suppurativa management. To address treatment decision-making needs of hidradenitis suppurativa patients, we developed a hidradenitis suppurativa patient decision aid.Entities:
Keywords: CI, confidence interval; SD, standard deviation; decisional conflict; hidradenitis suppurativa; patient decision aid; patient knowledge; randomized controlled trial; shared decision making
Year: 2020 PMID: 34409339 PMCID: PMC8361909 DOI: 10.1016/j.jdin.2020.09.001
Source DB: PubMed Journal: JAAD Int ISSN: 2666-3287
Fig 1A hidradenitis suppurativa patient decision aid versus Mayo Clinic hidradenitis suppurativa website. HS-PDA, Hidradenitis suppurativa patient decision aid.
Demographic characteristics and hidradenitis suppurativa–related information by group
| HS-PDA group (N = 18), mean (SD) | Mayo group (N = 16), mean (SD) | ||
|---|---|---|---|
| Age, y | 35.61 (8.87) | 36.63 (13.12) | .79 |
| Average age of HS diagnosis, y | 29.47 (9.89) | 26.13 (15.26) | .46 |
| Average no. of years with HS | 17.81 (8.04) | 18.14 (12.40) | .87 |
| Average no. of physicians consulted for HS | 4.44 (2.58) | 9.63 (14.70) | .18 |
| No. (%) | No. (%) | ||
| Sex | .12 | ||
| Men | — | 2 (12.50) | |
| Women | 18 (100.00) | 14 (87.50) | |
| Race | .002 | ||
| White | 16 (88.90) | 6 (37.50) | |
| Black or African American | 1 (5.56) | 10 (62.50) | |
| American Indian or Alaskan Native | — | — | |
| Asian (Asian Indian, Chinese, Filipino, Japanese, Korean, Vietnamese, or other Asian) | — | — | |
| Native Hawaiian or other Pacific Islander (Native Guamanian, Chamorro, Samoan, or other Pacific Islander) | — | — | |
| Other | — | ||
| Prefer not to answer | 1 (5.56) | ||
| Education | .34 | ||
| Current high school student | — | — | |
| Some high school | 1 (5.56) | — | |
| High school diploma | 4 (22.22) | — | |
| Current college/university student | 2 (11.11) | 3 (18.75) | |
| Some college or university | 3 (16.67) | 3 (18.75) | |
| College certificate/diploma | 2 (11.11) | 1 (6.25) | |
| Associate's degree | 1 (5.56) | 3 (18.75) | |
| Bachelor's degree | 3 (16.67) | 5 (31.25) | |
| Graduate degree (master's or doctorate) | 2 (11.11) | 1 (6.25) | |
| Frequency consulting a physician | .18 | ||
| Never | 3 (16.67) | — | |
| Monthly | 1 (5.56) | 4 (25.00) | |
| Bimonthly | — | 1 (6.30) | |
| Every 3 mo | 4 (22.22) | 1 (6.30) | |
| Three times/y | 2 (11.11) | 1 (6.30) | |
| Biyearly | 2 (11.11) | 4 (25.00) | |
| Yearly | 1 (5.56) | 1 (6.30) | |
| Every few years or as needed | 5 (27.77) | 3 (18.77) | |
| Prefer not to answer | — | 1 (6.30) | |
| Stage of HS | .21 | ||
| 1 | 2 (14.30) | — | |
| 1-2 | — | 2 (13.30) | |
| 2 | 4 (28.60) | 3 (20.00) | |
| 2-3 | 2 (14.30) | — | |
| 3 | 6 (42.90) | 8 (53.30) | |
| 4 | — | 1 (6.70) | |
| Prefer not to answer | — | 1 (6.70) | |
| No. (%) yes | No. (%) yes | ||
| Area(s) where HS presents | |||
| Groin | 11 (61.10) | 11 (68.80) | .64 |
| Buttocks | 1 (5.56) | 4 (25.00) | .11 |
| Underarms | 8 (44.40) | 8 (50.00) | .75 |
| Breasts | 3 (16.67) | 3 (18.80) | .87 |
| Stomach | — | 3 (18.80) | .05 |
| Legs | — | 1 (6.30) | .28 |
| Thighs | 1 (5.56) | 2 (12.50) | .34 |
| Neck | 1 (5.56) | — | .48 |
HS, Hidradenitis suppurativa; PDA, patient decision aid; SD, standard deviation.
Dashes denote a value of zero.
Hidradenitis suppurativa presentation is not mutually exclusive and can present in multiple areas at once.
Fig 2Changes in hidradenitis suppurativa–related knowledge and decisional conflict by group over time. Brackets denote significant changes between same measures. ∗P ≤ .05. ∗∗P ≤ .01. ∗∗∗P ≤ .001. HS-PDA, Hidradenitis suppurativa patient decision aid.
Treatment-related information, including preparation for decision making and decision regret, by group
| HS-PDA group (N = 18), no. (%) | Mayo group (N = 16), no. (%) | ||
|---|---|---|---|
| Current treatment? | .31 | ||
| Yes | 7 (38.89) | 8 (53.33) | |
| Not right now, but in the past | 11 (61.11) | 7 (46.67) | |
| No | — | — | |
| Preparation for decision making: the informational resource… | .01 | ||
| Helped you recognize that a decision needs to be made | 11 (68.75) | 6 (40.00) | |
| Prepared you to make a better decision | 14 (87.50) | 4 (26.67) | |
| Helped you think about the pros and cons of each option | 14 (87.50) | 4 (26.67) | |
| Helped you think about which pros and cons are most important | 13 (81.25) | 6 (40.00) | |
| Helped you know that the decision depends on what matters most to you | 13 (81.25) | 8 (53.33) | |
| Helped you organize your own thoughts about the decision | 9 (56.25) | 6 (40.00) | |
| Helped you think about how involved you want to be in this decision | 11 (68.75) | 10 (66.67) | |
| Helped you identify questions you want to ask your physician | 11 (68.75) | 9 (60.00) | |
| Prepared you to talk to your physician about what matters most to you | 14 (87.50) | 10 (66.67) | |
| Prepared you for a follow-up visit with your physician | 13 (81.25) | 8 (53.33) | |
| Pre: preference of treatment options | .15 | ||
| None | |||
| Topical | 2 (11.11) | 5 (31.25) | |
| Systemic | 1 (5.56) | — | |
| Biological | 1 (5.56) | 2 (12.50) | |
| Light devices and lasers | 1 (5.56) | — | |
| Surgery | — | 4 (25.00) | |
| Complementary and alternative | 6 (33.34) | 1 (6.25) | |
| Unsure | 7 (38.89) | 3 (18.75) | |
| Other: combination | — | 1 (6.25) | |
| Post 1: preference of treatment options | .23 | ||
| None | — | — | |
| Topical | 3 (18.75) | 4 (26.67) | |
| Systemic | 2 (12.50) | — | |
| Biological | 3 (18.75) | 3 (20.00) | |
| Light devices and lasers | 1 (6.25) | 1 (6.67) | |
| Surgery | — | 4 (26.67) | |
| Complementary and alternative | 6 (37.50) | 2 (13.33) | |
| Unsure | 1 (6.25) | 1 (6.67) | |
| Other | — | — | |
| (N = 15) | (N = 13) | ||
| Post 2: preference of treatment options | .48 | ||
| None | 1 (6.67) | — | |
| Topical | 3 (20.00) | 3 (23.08) | |
| Systemic | 2 (13.33) | — | |
| Biological | 2 (13.33) | 2 (15.38) | |
| Light devices and lasers | 2 (13.33) | 2 (15.38) | |
| Surgery | — | 3 (23.08) | |
| Complementary and alternative | 4 (26.67) | 1 (7.69) | |
| Unsure | 1 (6.67) | 1 (7.69) | |
| Other: combination | — | 1 (7.69) | |
| Post 2: treatment decision since first survey | .23 | ||
| Yes | 9 (60.00) | 5 (38.46) | |
| No | 6 (40.00) | 8 (61.54) | |
| Decision regret | .48 | ||
| It was the right decision | 6 (66.67) | 5 (100.00) | |
| I regret the choice that was made | — | — | |
| I would make the same choice if I had to do it over again | 7 (77.78) | 4 (80.00) | |
| The choice did me a lot of harm | — | — | |
| The decision was a wise one | 7 (77.78) | 3 (60.00) |
HS, Hidradenitis suppurativa; PDA, patient decision aid.
Dashes denote a value of zero.
Only participants who indicated “agreement” or “strong agreement” with questions 1, 3, and 5 are depicted. Also, only participants who indicated “disagreement” or “strong disagreement” with questions 2 and 4 are depicted.
Resource-related information by treatment group
| HS-PDA group (N = 18), no. (%) | Mayo group (N = 16), no. (%) | ||
|---|---|---|---|
| Used a previous information resource for HS | .21 | ||
| Yes | 6 (33.33) | 6 (37.50) | |
| No | 7 (38.89) | 3 (18.75) | |
| Unsure | 5 (27.78) | 7 (43.75) | |
| Information good or excellent | .04 | ||
| Effect of HS | 14 (87.50) | 9 (60.00) | |
| Risk factors | 15 (93.75) | 9 (60.00) | |
| Treatment options | 16 (100.00) | 10 (66.67) | |
| Evidence of effects on symptoms | 15 (93.75) | 8 (53.33) | |
| Length of the informational resource | .74 | ||
| Too long | 3 (18.75) | 1 (6.67) | |
| Too short | — | 3 (20.00) | |
| Just right | 13 (81.25) | 11 (73.33) | |
| Amount of information | .45 | ||
| Too much | 2 (12.50) | — | |
| Too little | 1 (6.25) | 4 (26.67) | |
| Just right | 13 (81.25) | 11 (73.33) | |
| Informational resource | .87 | ||
| Slanted toward lifestyle options | — | — | |
| Balanced | 13 (81.25) | 12 (80.00) | |
| Slanted toward taking medical treatments | 3 (18.75) | 3 (20.00) | |
| Informational resource useful when making a treatment decision | .05 | ||
| Yes | 16 (100.00) | 11 (73.33) | |
| No | — | 4 (26.67) | |
| Informational resource's effect on decision making | .04 | ||
| Made it easy | 16 (100.00) | 10 (66.67) | |
| Made it more difficult | — | 4 (26.67) |
HS, Hidradenitis suppurativa; PDA, patient decision aid.
Dashes denote a value of zero.