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| ====== Skin Conditions (SKIQ) ====== | ====== Skin Conditions (SKIQ) ====== | ||
| - | The Skin Conditions questionnaire is an [[additional assessments|additional assessment]] among adult [[cohort|Lifelines]] participants.\\ | + | The Skin Conditions questionnaire is an [[additional assessments|additional assessment]] among adult [[cohort|Lifelines]] participants. The digital questionnaire was developed at the initiative of the UMCG [[https://www.umcg.nl/NL/UMCG/Afdelingen/dermatologie/Wetenschappelijk_Onderzoek/Paginas/default.aspx|Department of Dermatology]] (NL). With the aim of the questionnaire being to gain more insight into [[https://en.wikipedia.org/wiki/Hidradenitis_suppurativa|hidradentitis supperativa]] and [[https://en.wikipedia.org/wiki/Dermatitis|eczema]] in the general population. |
| - | The digital questionnaire was developed at the initiative of the UMCG [[https://www.umcg.nl/NL/UMCG/Afdelingen/dermatologie/Wetenschappelijk_Onderzoek/Paginas/default.aspx|Department of Dermatology]] (NL).\\ | + | |
| - | The aim of the questionnaire was to gain more insight into [[https://en.wikipedia.org/wiki/Hidradenitis_suppurativa|hidradentitis supperativa]] and [[https://en.wikipedia.org/wiki/Dermatitis|eczema]] in the general population. | + | The collected SKIQ data is currently still under embargo. Please contact the Lifelines data managers at [[data@lifelines.nl]] for more information. |
| + | |||
| + | When the SKIQ data has been used in your research, you will have to include the following references: | ||
| + | * for publication on hand eczema: [[https://doi.10.2340/actadv.v101.432|Voorberg, A.N. et al. (2022) Prevalence and Severity of Hand Eczema in the Dutch General Population: A Cross-sectional, Questionnaire Study within the Lifelines Cohort Study, Acta Derm Venereol 102]] | ||
| + | * for publications on atopic dermatitis/eczema: [[https://doi.10.1111/jdv.17471|Zhang, J et al. (2021) Prevalence of adult atopic dermatitis in the general population, with a focus on moderate to severe disease: results from the Lifelines Cohort Study. Eur Acad Dermatol Venereol 35(11):e787-e790]] | ||
| ===== Protocol & response ===== | ===== Protocol & response ===== | ||
| - | The digital questionnaire was sent out between february and may 2020.\\ | + | The digital questionnaire was sent out between February and May 2020.\\ |
| - | ~136,000 adult Lifelines participants received the questionnaire, of which ~58,500 participants (43%) responded | + | ~136,000 adult Lifelines participants received the questionnaire, of which ~58,000 participants (43%) responded. |
| ===== Variables ===== | ===== Variables ===== | ||
| - | The following questions were asked about skin disorders: | + | The questions included in the skin conditions questionnaire included items from the following subsections: |
| - | | **Questions English** | **Questions Dutch** | **Variable** | **Assessment** | **Age** | | + | * [[Acne]] (8 items) |
| - | | Have you been diagnosed with any of the following skin diseases by a dermatologist (skin doctor) or an allergologist (allergy doctor)? | Is een van de volgende aandoeningen bij u vastgesteld door een dermatoloog (huidarts) of allergoloog (allergie arts)? | HANDECZ23 | [[AUTQ]] | 18+ | | + | * [[Allergies]] (2 items) |
| - | | Was the patch test positive for ingredients of hairdye/black henna? | Was de plaktest positief voor een bestandsdeel van haarverf/zwarte henna? | HANDECZ22 | [[AUTQ]] | 18+ | | + | * [[Eczema measure (POEM)]] (8 items) |
| - | | What were the results of the patch test? | Wat was de uitslag van de plaktest? | HANDECZ21 | [[AUTQ]] | 18+ | | + | * [[Familial diseases (other)]] (1 item) |
| - | | Have you ever had an allergy test, by patch testing the skin on your back? | Is er ooit een allergietest door middel van plakproeven uitgevoerd op de huid van uw rug? | HANDECZ20 | | | | + | * [[Medication]] (15 items) |
| - | | Other; what kind of reaction to the black henna tattoo did you have? | Anders, wat was de reactie op de tijdelijke zwarte henna tatoeage? | HANDECZ19TXT | | | | + | * [[Occupational eczema (NOSQ)]] (52 items) |
| - | | What kind of reaction to the black henna tattoo did you have? | Wat was de reactie op de tijdelijke zwarte henna tatoeage? | HANDECZ19 | | | | + | * [[Skin conditions]] (96 items) |
| - | | Have you ever had a skin reaction after a temporary black henna tattoo? | Hebt u ooit een huidreactie gehad na een tijdelijke zwarte henna tatoeage? | HANDECZ18 | | | | + | * [[Treatment (general)]] (28 items) |
| - | | Other; what kind of reaction to hairdye did you have? | Anders, wat was de reactie op de haarverf? | HANDECZ17TXT | | | | + | |
| - | | What kind of reaction to hairdye did you have? | Wat was de reactie op de haarverf? | HANDECZ17 | | | | + | |
| - | | Have you ever had a skin reaction after dyeing your hair (or dyeing your eyelashed/eyebrows)? | Hebt u ooit (gedurende het leven) een huidreactie gehad na het gebruik van haarverf (of na verven van wimpers/wenkbrauwen)? | HANDECZ16 | | | | + | |
| - | | At home: on an average day, how often do you wash your hands? | Thuis / Gemiddeld hoe vaak per dag wast u uw handen? | HANDECZ15B | | | | + | |
| - | | At work: on an average day, how often do you wash your hands? | Op het werk / Gemiddeld hoe vaak per dag wast u uw handen? | HANDECZ15A | | | | + | |
| - | | At home: On an average day, how many hours do you wear gloves that are impermeable to fluids? | Thuis / Gemiddeld hoeveel uur per dag draagt u vloeistofdichte handschoenen (handschoenen waar geen vloeistof/water doorheen kan)? | HANDECZ14B | | | | + | |
| - | | At work: On an average day, how many hours do you wear gloves that are impermeable to fluids? | Op het werk / Gemiddeld hoeveel uur per dag draagt u vloeistofdichte handschoenen (handschoenen waar geen vloeistof/water doorheen kan)? | HANDECZ14A | | | | + | |
| - | | At home: On an average day how many hours do your hands come into direct contact with water, fluids and/or moist products? (E.g. during washing your hands) | Thuis / Gemiddeld hoeveel uur per dag komen uw handen in direct contact met water, vloeistoffen en/of vochtige producten? (Bijvoorbeeld tijdens het wassen van uw handen) | HANDECZ13B | | | | + | |
| - | | At work: On an average day how many hours do your hands come into direct contact with water, fluids and/or moist products? (E.g. during washing your hands) | Op het werk / Gemiddeld hoeveel uur per dag komen uw handen in direct contact met water, vloeistoffen en/of vochtige producten? (Bijvoorbeeld tijdens het wassen van uw handen) | HANDECZ13A | | | | + | |
| - | | During the past 12 months, did you go to work despite feeling that you should have taken sick leave because of your hand eczema? | Is het de afgelopen 12 maanden voorgekomen dat u hebt gewerkt, terwijl u zich <u>vanwege uw handeczeem</u> beter ziek had kunnen melden? | HANDECZ12 | | | | + | |
| - | | During the past months, did you have to call in sick for work because of your hand eczema? | Hebt u zich de afgelopen 12 maanden moeten ziekmelden op het werk <u>vanwege uw handeczeem</u>? | HANDECZ11 | | | | + | |
| - | | Did you develop hand eczema during working in one of the following industries? (If you had an administrative position within the relevant industry, please do not check 'yes') | Was u <u>tijdens</u> het ontstaan van het handeczeem in een van de volgende beroepsgroepen werkzaam?<br><em>(Let op, <u>indien administratieve functie binnen betreffende bedrijfstak niet ja aankruisen</u>)</em> | HANDECZ10B | | | | + | |
| - | | Did you develop hand eczema after working in one of the following industries? (If you had an administrative position within the relevant industry, please do not check 'yes' | Was u <u>voor</u> het ontstaan van het handeczeem in een van de volgende beroepsgroepen werkzaam?<br><em>(Let op, <u>indien administratieve functie binnen betreffende bedrijfstak niet ja aankruisen</u>)</em> | HANDECZ10A | | | | + | |
| - | | Which of the following therapies (pills, capsules, injections) have you ever had for your hand eczema? | Welke van de volgende medicatie (tabletten, capsules, injecties) hebt u ooit voor uw <em>handeczeem</em> gehad? | HANDECZ09 | | | | + | |
| - | | On average, which group did your hand eczema match over the past 12 months? | In welke groep viel uw <em>handeczeem</em> gemiddeld, <u>gedurende de afgelopen 12 maanden</u>? | HANDECZ08 | | | | + | |
| - | | Which group did your hand eczema match, when your hand eczema was at its worst in the past 12 months? | In welke groep viel uw <em>handeczeem</em> toen het <u>op zijn ergst</u> was in de afgelopen 12 maanden? | HANDECZ07 | | | | + | |
| - | | Which group did your hand eczema match, when your hand eczema was at its worst? (lifetime) | In welke groep viel uw <em>handeczeem</em> toen het <u>op zijn ergst</u> was?<br><em>(Dit betreft het ergste handeczeem dat u ooit, dus nu of in het verleden, heeft gehad)</em> | HANDECZ06 | | | | + | |
| - | | At which age did you get hand eczema for the first time? | Op welke leeftijd hebt u voor het eerst handeczeem gehad? | HANDECZ05 | | | | + | |
| - | | How often have you had hand eczema in the past 12 months? | Hoe vaak hebt u handeczeem gehad de afgelopen 12 maanden? | HANDECZ04 | | | | + | |
| - | | Have you had hand eczema in the past 12 months? | Hebt u in de afgelopen 12 maanden <em>handeczeem</em> gehad? | HANDECZ03 | | | | + | |
| - | | Has a doctor ever diagnosed hand eczema? | Heeft een dokter ooit de diagnose <em>handeczeem</em> gesteld? | HANDECZ02 | | | | + | |
| - | | Have you ever had hand eczema? | Hebt u ooit (nu of in het verleden) <em>handeczeem</em> gehad? | HANDECZ01 | | | | + | |
| - | | Would you describe your eczema severity as mild, moderate or severe? | Zou u uw eczeem omschrijven als mild, matig of ernstig? | ECZ16 | | | | + | |
| - | | Over the last week, on how many days has your skin felt dry or rough because of your eczema? | Op hoeveel dagen in de vorige week heeft uw huid droog of ruw droog of ruw aangevoeld vanwege uw eczeem? | ECZ15 | | | | + | |
| - | | Over the last week, on how many days has your skin been flaking off because of your eczema? | Op hoeveel dagen in de vorige week is uw huid schilferig geweest vanwege uw eczeem? | ECZ14 | | | | + | |
| - | | Over the last week, on how many days has your skin been cracked because of your eczema? | Op hoeveel dagen in de vorige week heeft uw huid barstjes vertoond vanwege uw eczeem? | ECZ13 | | | | + | |
| - | | Over the last week, on how many days has your skin been weeping or oozing clear fluid because of your eczema? | Op hoeveel dagen in de vorige week heeft uw huid helder vocht verloren of afgescheiden vanwege uw eczeem? | ECZ12 | | | | + | |
| - | | Over the last week, on how many days has your skin been bleeding because of your eczema? | Op hoeveel dagen in de vorige week heeft uw huid gebloed vanwege uw eczeem? | ECZ11 | | | | + | |
| - | | Over the last week, on how many nights has your sleep been disturbed because of your eczema? | In hoeveel nachten in de vorige week werd uw slaap verstoord vanwege uw eczeem? | ECZ10 | | | | + | |
| - | | Over the last week, on how many days has your skin been itchy because of your eczema? | Op hoeveel dagen in de vorige week had u jeuk aan uw huid vanwege uw eczeem? | ECZ09 | | | | + | |
| - | | Do you currently have eczema, which is present for at least 1 week? | Hebt u op dit moment eczeem, dat minimaal 1 week aanwezig is? | ECZ08 | | | | + | |
| - | | Which of the following therapies (pills, capsules, injections) have you ever had for your atopic dermatitis/atopic eczema? | Welke van de volgende medicatie (tabletten, capsules, injecties) hebt u ooit voor uw constitutioneel/atopisch eczeem gehad? | ECZ07 | | | | + | |
| - | | Have you ever been diagnosed with atopic dermatitis or atopic eczema by a doctor? | Heeft een dokter ooit de diagnose constitutioneel eczeem of atopisch eczeem gesteld? | ECZ06 | | | | + | |
| - | | Have you ever had asthma or hay fever? | Hebt u ooit (nu of in het verleden) klachten van astma of hooikoorts gehad? | ECZ05 | | | | + | |
| - | | Has the skin disease ever affected the skin creases? (by skin creases we mean folds of elbows, behind the knees, fronts of ankles, under buttocks, around the neck, ears, or eyes) | Kwam de huidaandoening ooit (nu of in het verleden) voor in de huidplooien (bijv. elleboogplooien, knieholten, voorzijde van de enkels, rond de nek, oren of ogen)? | ECZ04 | | | | + | |
| - | | At what age did this itchy rash first occur? | Op welke leeftijd kwam deze jeukende huidaandoening voor het eerst voor? | ECZ03 | | | | + | |
| - | | Have you suffered from a dry skin in general in the past 12 months? | Had u een droge huid in de afgelopen 12 maanden? | ECZ02 | | | | + | |
| - | | Have you ever had an itchy rash that varied in severity? | Hebt u ooit een jeukende huidaandoening gehad die wisselend in ernst aanwezig was? | ECZ01 | | | | + | |
| - | | Did you ever (during your life) get the diagnosis of psoriasis? | Hebt u ooit (gedurende het leven) de diagnose <em>psoriasis</em> gekregen? | DERM21 | | | | + | |
| - | | Did you ever (during your life) get the diagnosis of polycystic ovary syndrome (PCOS)? | Hebt u ooit (gedurende het leven) de diagnose <em>polycysteus ovarium syndroom (PCOS)</em> gekregen? | DERM20 | | | | + | |
| - | | | Anders, waar hebt u ernstige acne klachten? | DERM19BTXT | | | | + | |
| - | | Where is the acne located? | Waar hebt u ernstige acne klachten? | DERM19B | | | | + | |
| - | | Since which year do you have severe acne symptoms? | Sinds welk jaartal hebt u ernstige acne klachten (bij benadering)? | DERM19A | | | | + | |
| - | | Do you have severe acne symptoms? | Hebt u ernstige <em>acne</em> klachten? | DERM19 | | | | + | |
| - | | | Anders, hoe zou u het verloop van uw huidklachten beschrijven sinds het begin van de huidziekte? | DERM18TXT | | | | + | |
| - | | How would you describe the activity of your HS symptoms at this moment? | Hoe zou u het verloop van uw huidklachten beschrijven sinds het begin van de huidziekte? | DERM18 | | | | + | |
| - | | | Hoe zou u de activiteit van uw huidklachten op dit moment omschrijven? | DERM17 | | | | + | |
| - | | How would you score the severity of your HS? | Hoe zou u zelf de ernst van uw HS inschatten?<br><em>Zie hiervoor ook de afbeeldingen hierboven.</em> | DERM16 | | | | + | |
| - | | | Anders, op welke locaties hebt u <u>op dit moment</u> of <u>in het verleden</u> vaak ontstekingen gehad? | DERM15TXT | | | | + | |
| - | | On which locations/areas do you currently have or in the past had, inflammations/boils? | Op welke locaties hebt u <u>op dit moment</u> of <u>in het verleden</u> vaak ontstekingen gehad? | DERM15 | | | | + | |
| - | | | Anders, bij welke arts(en) bent u <u>in het verleden</u> onder behandeling geweest? | DERM14TXT | | | | + | |
| - | | What kind of doctors have treated you for HS in the past? | Bij welke arts(en) bent u <em>in het verleden</em> onder behandeling geweest? | DERM14 | | | | + | |
| - | | At what age did you get HS symptoms for the first time? (approximately) | Op welke leeftijd begonnen deze huidklachten (maak een schatting)? | DERM13 | | | | + | |
| - | | Did you have a minimum of 2 outbreaks of boils or nodules within a period of 6 months? | Hebt u minimaal 2 uitbraken gehad van abcessen of ontstekingen in een periode van 6 maanden? | DERM12 | | | | + | |
| - | | Do you repeatedly have outbreaks of big sore or painful nodules or boils that heal with scars in any of these locations: groins, armpits, buttocks or other areas, as shown on the pictures below? | Hebt u pijnlijke, herhaaldelijk terugkerende abcessen of ontstekingen in de oksels, liezen of billen of op andere plekken zoals te zien op onderstaande afbeeldingen? | DERM11 | | | | + | |
| - | | | Anders, hoe zou u het verloop van uw huidklachten beschrijven sinds het begin van de huidziekte? | DERM10TXT | | | | + | |
| - | | How would you describe the course of your HS symptoms since the start of the skin disease? | Hoe zou u het verloop van uw huidklachten beschrijven sinds het begin van de huidziekte? | DERM10 | | | | + | |
| - | | How would you describe the activity of your HS symptoms at this moment? | Hoe zou u de activiteit van uw huidklachten op dit moment omschrijven? | DERM09 | | | | + | |
| - | | When you look at the pictures below, showing a classification of HS, in which category would you place yourself? | Als u kijkt naar onderstaande fotos waarop een classificatie van HS te zien is, in welke categorie zou u uzelf indelen? | DERM08 | | | | + | |
| - | | Did one of your direct family members (father/mother/brother/sister/son/daughter) ever (during their life) get the diagnosis of hidradenitis suppurativa (HS)? | Heeft één van uw directe familieleden (vader/moeder/broer/zus/zoon/dochter) ooit (gedurende het leven) de diagnose <em>hidradenitis suppurativa</em> (HS) gekregen? | DERM07 | | | | + | |
| - | | At what age did you get HS symptoms for the first time? (approximately) | Op welke leeftijd begonnen de klachten van hidradenitis suppurativa (bij benadering)? | DERM06 | | | | + | |
| - | | | Anders, op welke locaties hebt u <u>op dit moment</u> of <u>in het verleden</u> vaak ontstekingen gehad? | DERM05TXT | | | | + | |
| - | | On which locations/areas do you currently have or in the past had, inflammations/boils? | Op welke locaties hebt u <u>op dit moment</u> of <u>in het verleden</u> vaak ontstekingen gehad? | DERM05 | | | | + | |
| - | | | Anders, bij welke arts(en) bent u <u>in het verleden</u> onder behandeling geweest? | DERM04TXT | | | | + | |
| - | | What kind of doctors have treated you for HS in the past? | Bij welke arts(en) bent u <em>in het verleden</em> onder behandeling geweest? | DERM04 | | | | + | |
| - | | | Anders, wat is de reden dat u op dit moment geen behandeling krijgt? | DERM03BTXT | | | | + | |
| - | | What is the reason that you are not receiving treatment at the moment? | Wat is de reden dat u op dit moment geen behandeling krijgt? | DERM03B | | | | + | |
| - | | | Anders, bij wat voor soort arts bent u op dit moment onder behandeling? | DERM03ATXT | | | | + | |
| - | | What kind of doctor is currently treating your HS? | Bij wat voor soort arts bent u <u>op dit moment</u> onder behandeling? | DERM03A | | | | + | |
| - | | Are you currently receiving treatment for hidradenitis suppurativa? | Bent u <u>op dit moment</u> onder behandeling voor hidradenitis suppurativa? | DERM03 | | | | + | |
| - | | | Anders, wie heeft de <u>diagnose</u> HS bij uw gesteld? | DERM02TXT | | | | + | |
| - | | Who diagnosed your HS? | Wie heeft de <u>diagnose</u> HS bij uw gesteld? | DERM02 | | | | + | |
| - | | Did you ever (during your life) get the diagnosis of hidradenitis suppurativa (HS)? | Hebt u ooit (gedurende het leven) de diagnose <em>hidradenitis suppurativa</em> (HS) gekregen? | DERM01 | | | | + | |
| - | Furthermore, some questions were asked about informal care, in addition to 2 basic [[informal care]] questions: | + | ===== Publications using SKIQ data ===== |
| - | + | ||
| + | * Zhang, J et al. (2021) [[https://onlinelibrary.wiley.com/doi/10.1111/jdv.17471|Prevalence of adult atopic dermatitis in the general population, with a focus on moderate to severe disease: results from the Lifelines Cohort Study]]. Eur Acad Dermatol Venereol 35(11):e787-e790 | ||
| + | * * Zhang J et al. (2021) [[https://www.sciencedirect.com/science/article/pii/S2666328721001061?via%3Dihub|Impact of the COVID-19 pandemic on adults with moderate-to-severe atopic dermatitis in the Dutch general population]] JAAD Int 6:86-93 | ||
| + | * Zhang, J et al. (2022) [[https://academic.oup.com/ced/article/47/8/1523/6692927?login=true|Moderate-to-severe atopic dermatitis and lifestyle factors in the Dutch general population]]. Clin Exp Dermatol 47(8): 1523–1535 | ||
| + | * Voorberg, A.N. et al. (2022) [[https://onlinelibrary.wiley.com/doi/10.1111/cod.13804|Prevalence and Severity of Hand Eczema in the Dutch General Population: A Cross-sectional, Questionnaire Study within the Lifelines Cohort Study]], Acta Derm Venereol 102. | ||
| + | * Loman L. and Schuttelaar M.L.A. (2022) [[https://onlinelibrary.wiley.com/doi/10.1111/cod.14005|Hand eczema and lifestyle factors in the Dutch general population: Evidence for smoking, chronic stress, and obesity]]. Contact Dermatitis 86(2):80-88. | ||
| + | * Brands M.J. et al. (2022) [[https://onlinelibrary.wiley.com/doi/10.1111/cod.14066|Exposure and work-related factors in subjects with hand eczema: Data from a cross-sectional questionnaire within the Lifelines Cohort Study]]. Contact Dermatitis 86(6):493-506 | ||
| + | * Prens L.M. et al. (2022) [[https://academic.oup.com/bjd/article-lookup/doi/10.1111/bjd.20954|New insights in hidradenitis suppurativa from a population-based Dutch cohort: prevalence, smoking behaviour, socioeconomic status and comorbidities]] Br J Derm 186(5): 814–822 | ||
| + | * Zhang J et al. (2023) [[https://www.sciencedirect.com/science/article/pii/S2213219823000107?via%3Dihub|Limited health literacy and its associated health outcomes among adults with at least 2 atopic diseases]] J Allerg Clin Immunol 11(5): 1429-1438 | ||
| + | * Zhang J et al. (2023) [[https://medicaljournalssweden.se/actadv/article/view/9378|Beyond anxiety and depression: Loneliness and psychiatric disorders in adults with atopic dermatitis]] ActaDV 103, adv9378 | ||
| + | * van der Weijden DAY (2023) [[https://academic.oup.com/bjd/advance-article/doi/10.1093/bjd/ljad317/7259837?login=true|Hidradenitis suppurativa tarda: defining an understudied elderly population]] Br J Derm: ljad317 | ||
| + | * Brands M. J. et al. (2024) [[https://doi.org/10.1111/cod.14510|Hand eczema-related presenteeism and sickness absence: A cross-sectional population-based study]]. Contact Dermatitis 90(4):372-377 | ||
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