What do scores mean? Informed interpretation and clinical judgement are needed

Finlay, A.Y.; Sampogna, Francesca

doi:10.1111/bjd.17028

Cited by 16 publications

(13 citation statements)

References 9 publications

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“…In a previous study, switching to the DLQI‐R allowed 3·3 percentage points more patients with moderate‐to‐severe psoriasis to achieve the ‘Psoriasis Area and Severity Index > 10 and DLQI > 10’ threshold set out by treatment guidelines . Other authors, however, argued that instead of changing the scoring of DLQI, rather the criteria of the ‘Rule of Tens’ need to be interpreted in a less absolute way …”

Section: Discussionmentioning

confidence: 99%

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DLQI‐R scoring improves the discriminatory power of the Dermatology Life Quality Index in patients with psoriasis, pemphigus and morphea

et al. 2019

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Background The Dermatology Life Quality Index (DLQI) rates 'not relevant' responses (NRRs) as the item on the questionnaire having no impact on the patients' lives at all. The DLQI-Relevant (DLQI-R) is a recently developed scoring that adjusts the total score of the questionnaire for the number of NRRs indicated by a patient. Objectives To compare the discriminatory power of the original and DLQI-R scoring approaches in terms of absolute and relative informativity. Methods Cross-sectional data from 637 patients with morphea, pemphigus and psoriasis were used for the analyses. To assess absolute and relative informativity, Shannon's index and Shannon's evenness index were calculated for the 10 items on the questionnaire and for DLQI and DLQI-R total scores. Results Mean DLQI and DLQI-R scores of patients were 6Á13 vs. 6Á91. In the subset of patients with NRRs (n = 261, 41%), absolute informativity was higher with the DLQI-R scoring for all eight items with NRR options in all three conditions. The DLQI-R exhibited a better relative informativity in 8, 8 and 6 items in pemphigus, morphea and psoriasis, respectively. The DLQI-R led to an improvement in average item-level informativity in all DLQI score bands up to 20 points. Regarding total scores, the DLQI-R produced both a higher absolute and relative informativity in all three conditions. Conclusions In patients with morphea, pemphigus and psoriasis, DLQI-R scoring improves the discriminatory power of the questionnaire by benefiting from the additional information in NRRs. DLQI-R scoring may be useful both in clinical practice and research. A scoring chart has been developed to aid physicians with scoring.What's already known about this topic?• The original scoring of the Dermatology Life Quality Index (DLQI) rates 'not relevant' responses as the item of the questionnaire having no impact on the patients' lives at all.• DLQI-Relevant (DLQI-R) is a new scoring developed in 2018 that adjusts the total score of the questionnaire for the number of 'not relevant' responses indicated by patients.• The discriminatory power of the DLQI-R compared with the DLQI has not yet been investigated.

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Section: Discussionmentioning

confidence: 99%

“…It also needs to be defined when the change in DLQI‐R becomes ‘significant’ to a patient (i.e. minimal clinically important difference) . This would be an essential step to get the DLQI‐R scoring accepted by professional societies and treatment guidelines.…”

Section: Discussionmentioning

confidence: 99%

DLQI‐R scoring improves the discriminatory power of the Dermatology Life Quality Index in patients with psoriasis, pemphigus and morphea

et al. 2019

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“…The scoring of each question ranges from 3 (very much) to 0 (no impact) [12]. The total score falls into 5 categories: no effect on the child's life (0-1), small effect on the child's life (2)(3)(4)(5)(6), moderate effect on the child's life (7)(8)(9)(10)(11)(12), very large effect (13)(14)(15)(16)(17)(18), and extremely large effect (19-30) [13]. In adult patients (18 years and older), the DLQI questionnaire is used [14].…”

Section: Validated Assessment Toolsmentioning

confidence: 99%

The Burden of Disease in Alopecia Areata: Canadian Online Survey of Patients and Caregivers

Gilding¹,

Ho²,

Pope³

et al. 2022

JMIR Dermatol

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Background Alopecia areata (AA) is associated with negative impacts on the quality of life (QoL). Data on this impact are lacking for Canadian patients and their caregivers. Objective This study aims to investigate the burden of AA on Canadian patients and their caregivers. Methods We created 4 online surveys for patients 5-11 years old, 12-17 years old, and ≥18 years old and for caregivers of children (<18 years old) with AA. These were disseminated through the Canadian Alopecia Areata Foundation (CANAAF) website and to dermatologists across Canada. Results In total, 115 adult patients (n=100, 87%, female), 14 pediatric patients (n=13, 92.9%, female), and 15 caregivers completed the surveys online. The majority (n=123, 95%) of patients felt uncomfortable or self-conscious about their appearance. Camouflaging hair loss with hats, scarves, and hairpieces was a common practice for 11 (78.6%) pediatric and 84 (73%) adult patients. Avoidance of social situations was reported by 8 (57.1%) pediatric and 75 (65.2%) adult patients. Constant worry about losing the achieved hair growth was a concern for 8 (57.1%) pediatric and 75 (65.2%) adult patients. On a scale of 1-5, the mean score of caregivers’ own feelings of sadness or depression about their child’s AA was 4.0 (SD 0.9) and of their feelings of guilt or helplessness was 4.2 (SD 1.2). The impact on the QoL was moderate for both children and adults. Based on the Adjustment Disorder New Module-20 (ADNM-20), 71 (61.7%) of 115 patients were at high risk of an adjustment disorder. Abnormal anxiety scores were recorded in 40 (34.8%) patients compared to abnormal depression scores in 20 (17.4%) patients. Conclusions This study confirmed a significant burden of AA on Canadian patients’ and caregivers’ QoL.

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“…However, introducing an additional more complicated scoring system may not be appropriate ( 67 ) and would be impractical in busy clinics, require a wide range of revalidation studies to be performed and introduce confusion into the interpretation of DLQI scores ( 68 ). Whatever method is used to calculate them, DLQI scores should be used to help the clinician take the most appropriate decision for individual patients, and not used to restrict clinical judgement.…”

Section: Quality Of Life Instruments For Atopic Dermatitis Chosen By ...mentioning

confidence: 99%

Counting the Burden: Atopic Dermatitis and Health-related Quality of Life

Ali¹,

Vyas²,

Finlay³

2020

Acta Derm Venereol

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This is an open access article under the CC BY-NC license. www.medicaljournals.se/acta Acta Derm Venereol 2020; 100: adv00161 Centenary theme section: ATOPIC DERMATITIS SIGNIFICANCE Atopic dermatitis is the most common inflammatory skin condition globally that affects both children and adults. The symptoms of atopic dermatitis as well as the demands of treatment often contribute to a significant impact on patient quality of life (QoL). This QoL impairment may also extend to caregivers, partners and close family members of atopic dermatitis sufferers. This review aims to evaluate the impact of atopic dermatitis on the QoL of patients and close relatives. A myriad of tools are available for measuring QoL; a brief description of the most relevant instruments is also presented in this article. Atopic dermatitis is the most prevalent chronic inflammatory skin condition globally. The burden of atopic dermatitis on children and adults is extensive and there is also significant impact on the lives of patient caregivers and family members. It is important to be able to measure this impact to inform clinical decisions and to plan appropriate patient and carer support. The current impact of atopic dermatitis on children and adults can be measured using several different quality of life questionnaires: the most frequently used are the Dermatology Quality of Life (DLQI), Children's Dermatology Quality of Life and Infants Dermatology Quality of Life. The impact on partners and family can be measured using several atopic dermatitis specific questionnaires or the Family DLQI or the generic Family Reported Outcome Measure, FROM-16.

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What do scores mean? Informed interpretation and clinical judgement are needed

Abstract: Linked Article: Rencz et al. Br J Dermatol 2018; 179:1102–1108.

Cited by 16 publications

References 9 publications

DLQI‐R scoring improves the discriminatory power of the Dermatology Life Quality Index in patients with psoriasis, pemphigus and morphea

DLQI‐R scoring improves the discriminatory power of the Dermatology Life Quality Index in patients with psoriasis, pemphigus and morphea

The Burden of Disease in Alopecia Areata: Canadian Online Survey of Patients and Caregivers

Counting the Burden: Atopic Dermatitis and Health-related Quality of Life

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