Self-management-competency as a new target in Hidradenitis suppurativa care

Figures & data

Table 1. Criteria on heiQ for patients with HS, compared to other diseases.

	Mean	SD	Lower third (L3)	Upper third (U3)	Cohen’s d^a to bowles disease	Cohen’s d^1) to rheuma	Cohen’s d^1) to oncology
heiQ_Activ	2.87	0.61	≤ 2.40	≥ 3.20	0.21	0.05	0.41
heiQ_Health	2.49	0.73	≤ 2.00	≥ 2.75	0.36	0.52	0.97
heiQ_Skill	2.73	0.55	≤ 2.25	≥ 3.00	0.01	0.07	0.71
heiQ_Const	3.06	0.61	≤ 2.40	≥ 3.20	0.16	0.08	0.44
heiQ_Self	2.91	0.47	≤ 2.67	≥ 3.17	0.46	0.33	0.67
heiQ_Coop	2.93	0.60	≤ 2.60	≥ 3.20	0.39	0.22	0.92
heiQ_Social	2.80	0.66	≤ 2.40	≥ 3.00	0.19	0.02	0.93
heiQ_Emo	2.65	0.73	≤ 2.17	≥ 3.00	−0.42	0.06	−0.55

^aCalculated as difference between mean of other disease ¹ and HS-mean divided by SD of HS-value.

Schwarze M. Übersetzung, Adaption und Validierung des HeiQ – eines generischen Instruments zur Bewertung von Patientenschulungen (PS) und Selbstmanagementprogrammen (SM). In. Abschlussbericht. Hannover. 2011.

Table 2. Baseline characteristics.

Characteristics	mean ± SD or absolute/relative numbers are shown
Age in years	40.30 ± 10.24
Gender
Male	66 (25.6%)
Female	192 (74.4%)
Hurley Stage
Hurley I	42 (16.3%)
Hurley II	156 (60.5%)
Hurley III	60 (23.3%)
PRDA (n = 182)	16.96 ± 16.45
Pain NRS (n = 198)	5.11 ± 2.68
DLQI (n = 194)	11.35 ± 7.79
HADS (n = 194)	13.71 ± 7.57
ISI (n = 179)	9.58 ± 5.76
Smoking behavior (n = 181)
Non-smoker	48 (26.5%)
Former smoker	52 (28.7%)
Smoker	68 (37.6%)
Vaping with nicotine	13 (0.7%)
Cigarettes/day (n = 68)	14.01 ± 7.66
BMI	32.47 ± 7.40
Living site (n = 181)
Rural	95 (52.5%)
City	86 (47.5%)
Work status (n = 182)
Employed	144 (79.12%)
Not employed*	51 (20.88%)
SHG activity
No	130 (50.4%)
Yes	128 (49.6%)

* Including student, retired, ‘erwerbsunfähig’, ‘arbeitsunfähig’, unemployed, other.

Table 3. Odds ratios between heiQ domains and HS-relevant endpoints.

heiQ domains		PRDA	Pain-NRS	DLQI	HADS	ISI
		12	13	15	26	15	Derived index
heiQ_Activ	Odds-Ratio	2.689	3.197	3.158	32.727	4.714	13
	95% CI	[1.20 ; 6.02]	[1.38 ; 7.40]	[1.17 ; 8.54]	[11.74 ; 91.28]	[1.77 ; 12.56]
	NU3 / NL3	62 / 45	68 / 53	67 / 52	67 / 52	62 / 48
heiQ_Health	Odds-Ratio	2.995	1.672	2.051	3.141	1.593	4
	95% CI	[1.38 ; 6.50]	[0.75 ; 3.73 ]	[0.76 ; 5.57]	[1.48 ; 6.65]	[0.63 ; 4.07]
	NU3 / NL3	54 / 58	61 / 62	60 / 61	60 / 61	52 / 56
heiQ_Skill	Odds-Ratio	2.111	3.726	3.065	2.297	1.614	8
	95% CI	[1.06 ; 4.21]	[1.75 ; 7.93]	[1.23 ; 7.63]	[1.20 ; 4.42]	[0.76 ; 3.44]
	NU3 / NL3	78 / 61	85 / 70	83 / 69	83 / 69	76 / 63
heiQ_Const	Odds-Ratio	2.256	2.748	8.164	45.600	3.947	15
	95% CI	[1.10 ; 4.63]	[1.33 ; 5.67]	[2.31 ; 28.84]	[15.56 ; 133.62]	[1.54 ; 10.11]
	NU3 / NL3	58 / 68	63 / 76	62 / 75	62 / 75	61 / 65
heiQ_Self	Odds-Ratio	1.788	2.204	0.917	2.748	0.837	4
	95% CI	[0.87 ; 3.70]	[1.00 ; 4.85]	[0.39 ; 2.18]	[1.36 ; 5.56]	[0.36; 1.95]
	NU3 / NL3	72 / 52	76 / 60	75 / 59	75 / 59	68 / 55
heiQ_Coop	Odds-Ratio	1.792	2.498	2.605	9.059	4.219	9
	95% CI	[0.82 ; 3.90]	[1.11 ; 5.60]	[0.98 ; 6.93]	[3.87 ; 21.22]	[1.60 ; 11.11]
	NU3 / NL3	53 / 52	58 / 59	56 / 59	56 / 59	52 / 53
heiQ_Social	Odds-Ratio	2.780	2.096	5.385	29.597	7.453	13
	95% CI	[1.24 ; 6.22]	[0.94 ; 4.70]	[1.66 ; 17.46]	[10.57 ; 82.86]	[2.32 ; 23.99]
	NU3 / NL3	54 / 49	61 / 55	60 / 54	60 / 54	57 / 50
heiQ_Emo	Odds-Ratio	0.276	0.212	0.074	0.040	0.266	15
	95% CI	[0.12 ; 0.62]	[0.09 ; 0.49]	[0.02 ; 0.26]	[0.015 ; 0.11]	[0.09 ; 0.80]
	NU3 / NL3	54 / 55	58 / 61	57 / 59	57 / 59	52 / 56
Obesity	Odds-Ratio	0.907	0.779	1.000	1.043	0.947
	95% CI	[0.50 ; 1.64 ]	[0.43 ; 1.42]	[0.48 ; 2.06]	[0.59 ; 1.84]	[0.46 ; 1.97]
	Nnad / Nad	87 / 91	98 / 97	96 / 96	96 / 96	85 / 84
Smoker	Odds-Ratio	1.992	1.841	1.078	1.108	1.556
	95% CI	[1.06 ; 3.75]	[0.97 ; 3.51]	[0.50 ; 2.33]	[0.61 ; 2.03]	[0.76 ; 3.17]
	NNS / NS	86 / 76	95 / 79	94 / 78	94 / 78	98 / 81
1 − 1.99 / 1 − 0,499	1 index point
2 − 3.99 / 0,5 − 0,251	2 index points
4 − 5.99 / 0,25 − 0,167	3 index points
> 6 / < 0,167	4 index points

The upper third (U3) of respondents in heiQ serves as 0, the lower third (L3) as 1. For endpoints the following binary conditions are used to classify for 1: PRDS > 10, pain-NRS > 3, DLQI >19, HADS > 14, ISI > 14.

Table 4. Patients wishes for the content of an HS-App.

Patient wishes for possible functions in an HS-App	Proportion
Cleansing and skin care (e.g., tips for hair removal, soothe itching, suitable toiletries and soaps) → Cleansing and skin care	47.0%
Wound care and scar care incl. adequate dressings (when to call a doctor?) → Wound care	40.5%
Treatment options (ointments, drugs, surgery, alternative treatments, mode of action and side effects) → Treatment options and disease understanding	35.5%
Trigger factors and preventive measures (e.g., food, smoking, alcohol, supplements, period, stress) → Trigger and risk factors	29.0%
Expert contact (identification, consultation, information) → Expert finder and suggestion	18.0%
Forum for affected persons / exchange of experiences (private chat function) → Mental coping and self-aid groups	17.0%
Everyday tips (e.g., tips for clothing, ‘household remedies’, sleep improvement, self-care, hot weather and sweating) → Treatment options and disease understanding → Cleansing and skin care	14.5%
Diary (incl. treatments and pictures) → Diary	12.0%
Comorbidities and their effect (e.g., depression or diabetes) → Treatment options and disease understanding	8.0%
Pain management (acute inflammation and chronic pain) → Pain management	7.0%
Explanation of pathogenesis of HS and explanation of lesion types and Hurley stages → Treatment options and disease understanding	7.0%
Communication health insurance and regulatory authorities (apply for reimbursement of new therapies or disability status) → Communication health insurance and regulatory authorities	6.5%
Types of sport (e.g., swimming, yoga) → Treatment options and disease understanding	4.0%
How to talk to family and friends (suggestion for couple therapy and sex-life) → Communication with family and friends	2.5%
Social Interaction with employer and colleagues concerning HS (info sheet on what HS is) → Communication with employer and colleagues	2.0%
heiQ domains	Suggestions derived from patient wishes by the study team (added index*)
heiQ_Const (15 index points)	Stress reduction and personal time-outs spending on things you enjoy (47)
	Mental coping and self-aid groups (38)
heiQ_Emo (15 index points)	Stress reduction and personal time-outs spending on things you enjoy (47)
	Mental coping and self-aid groups (38)
heiQ_Activ (13 index points)	Stress reduction and personal time-outs spending on things you enjoy (47)
	Suggestions for sport (17)
heiQ_Social (13 index points)	Mental coping and self-aid groups (38)
	Communication with family and friends (13)
	Communication with employer and colleagues (13)
heiQ_Coop (9 index points)	Treatment options and disease understanding (21)
	Diary (13)
	Expert finder and suggestion (9)
	Communication health insurance and regulatory authorities (9)
heiQ_Skill (8 index points)	Treatment options and disease understanding (21)
	Cleansing and skin care (12)
	Wound care (8)
	Pain management (8)
heiQ_Self (4 index points)	Treatment options and disease understanding (21)
	Diary (13)
	Cleansing and skin care (12)
	Trigger and risk factors (4)
heiQ_Health (4 index points)	Stress reduction and personal time-outs spending on things you enjoy (47)
	Suggestions for sport (17)

* Sum of all index points of the domains, where the suggestion is associated.

Data availability statement

All data is available from the authors upon reasonable request.