A detailed analysis of ‘not relevant’ responses on the <scp>DLQI</scp> in psoriasis: potential biases in treatment decisions

Rencz, Fanni; Poór, Adrienn Katalin; Péntek, Márta; Holló, Péter; Kárpáti, Sarolta; Gulàcsi, László; Szegedi, Andrea; Remenyik, Éva; Hidvégi, Bernadett; Herszényi, Krisztina; Jókai, Hajnalka; Beretzky, Zsuzsanna; Brodszky, Valentin

doi:10.1111/jdv.14676

Cited by 50 publications

(84 citation statements)

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“…Very few authors reported on the total number of NRRs in patients with psoriasis, and only one study indicated the rate of patients with more than one NRR . According to these data, on average 5–39% of people across populations of patients with psoriasis marked at least one NRR . As not all patients are affected by NRRs, it may be tempting to interpret scores based on DLQI‐R using the same MCID and score bandings.…”

Section: Discussionmentioning

confidence: 99%

“…8 According to these data, on average 5-39% of people across populations of patients with psoriasis marked at least one NRR. 9,21,31,32,[38][39][40] As not all patients are affected by NRRs, it may be tempting to interpret scores based on DLQI-R using the same MCID and score bandings. Nevertheless, a formal study with anchoring questions is warranted to test the potential need to modify the DLQI banding when using DLQI-R instead of DLQI.…”

Section: Discussionmentioning

confidence: 99%

“…According to current treatment guidelines, moderate‐to‐severe psoriasis is defined as DLQI > 10 and either PASI > 10 or body surface area (BSA) > 10; this is required for patients to become candidates for systemic therapy including biologics . However, a recent study reported that ‘not relevant’ responses (NRRs) on the DLQI occurred in up to 40% of patients with psoriasis, especially in the items relating to sport, sexual difficulties and working/studying …”

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confidence: 99%

“…7,8 However, a recent study reported that 'not relevant' responses (NRRs) on the DLQI occurred in up to 40% of patients with psoriasis, especially in the items relating to sport, sexual difficulties and working/studying. 9 As all NRRs are scored as the item having no impact on patients' lives at all, they artificially improve patients' DLQI scores. For these individuals, it might be more difficult to fulfil the DLQI > 10 criterion required by clinical guidelines despite having severe psoriasis.…”

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Proposal of a new scoring formula for the Dermatology Life Quality Index in psoriasis

et al. 2018

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Proposal of a new scoring formula for the Dermatology Life Quality Index in psoriasis

et al. 2018

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“…Autoimmune blistering diseases including pemphigus are reported to cause one of the largest HRQoL impairment among chronic skin diseases . HRQoL outcomes are increasingly being recognized as an important tool to aid treatment decisions in dermatology . A method to quantify the HRQoL loss from disease and the HRQoL benefits of treatments is the assessment of health utility values.…”

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confidence: 99%

Patient‐assigned health utility values for controlled and uncontrolled pemphigus vulgaris and foliaceus

Hajdu

Brodszky

Stalmeier

et al. 2019

Acad Dermatol Venereol

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Background The assessment of health‐related quality of life (HRQoL) in patients with pemphigus is now of increasing interest due to the availability of highly effective new therapies. Preference‐based HRQoL values or health utilities required for medical and financial decision‐making are not yet available directly from pemphigus patients. Objective To obtain health utility values for current health and hypothetical health states from the perspective of pemphigus patients. Methods A cross‐sectional questionnaire survey was carried out with pemphigus patients. Disease severity was rated by Autoimmune Bullous Skin Disorder Intensity Score (ABSIS). Patients were asked to evaluate their current health as well as three common hypothetical pemphigus health states [uncontrolled pemphigus vulgaris (PV), uncontrolled pemphigus foliaceus (PF) and controlled PV/PF] by using composite time trade‐off (cTTO). Multiple regression was applied to explore determinants of utility values. Results Responses of 108 patients (64.8% women, mean age 57.4 years) were analysed. Mean ABSIS score was 11.6. The mean utility values for the hypothetical uncontrolled PV, uncontrolled PF and controlled PV/PF health states were 0.41, 0.52 and 0.66 with cTTO. The mean cTTO scores for current health were higher compared with the hypothetical health states (0.76; P < 0.001). Patients with higher ABSIS, worse pain intensity scores and those having a caregiver reported lower utility values for current health (P < 0.05). Conclusions In pemphigus, HRQoL impairment expressed in utility values seems to be considerable, especially in comparison with other chronic dermatological conditions (e.g. psoriasis, atopic eczema, chronic hand eczema). These health utilities inform physicians, policymakers and funders about the overall extent of health loss in pemphigus and provide evidence to guide medical decisions and cost‐effectiveness analyses of treatment strategies. Future research is needed to evaluate the caregiver burden in pemphigus.

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Influence of “Not Relevant” Responses on the Dermatology Life Quality Index (DLQI) for Patients With Psoriasis in the United States

Barbieri

Gelfand

2019

JAMA Dermatol

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The Dermatology Life Quality Index (DLQI) is a popular healthrelated quality-of-life measure in dermatology. However, there are concerns that scoring "not relevant" responses as equivalent to "not at all" may bias the DLQI toward underestimating severity of disease, and recent studies of patients with psoriasis in Europe found that those who responded "not relevant" had more severe disease than those who responded "not at all." 1,2 Given cross-cultural differences in response patterns, the purpose of this study was to evaluate whether a similar association exists for the English-language DLQI administered to patients with psoriasis in the United States. 3 Methods | A cross-sectional reanalysis was conducted using data from the Dermatology Clinical Effectiveness Research Network. 4 For items 3 through 10 on the DLQI, overall subjective and objective evaluation of the severity of disease were compared between those who responded "not relevant" and those who responded "not at all." Subjective severity of disease was assessed using the DLQI, EuroQol Health-Related

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A detailed analysis of ‘not relevant’ responses on the DLQI in psoriasis: potential biases in treatment decisions

Abstract: The high rate of psoriasis patients with NRRs, especially among women, less educated and elderly patients, indicates a content validity problem of the measure. A reconsideration of the use of the DLQI for medical and financial decision-making in psoriasis patients is suggested.

Cited by 50 publications

References 67 publications

Proposal of a new scoring formula for the Dermatology Life Quality Index in psoriasis

Proposal of a new scoring formula for the Dermatology Life Quality Index in psoriasis

Patient‐assigned health utility values for controlled and uncontrolled pemphigus vulgaris and foliaceus

Influence of “Not Relevant” Responses on the Dermatology Life Quality Index (DLQI) for Patients With Psoriasis in the United States

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