Broader concepts of quality of life measurement, encompassing validation

Finlay, A.Y.

doi:10.1111/jdv.14254

Cited by 24 publications

(28 citation statements)

References 54 publications

(82 reference statements)

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“…However, the question content of HRQoL measures should ideally be based solely on the actual experiences of patients, as is the case for the most widely used instruments in dermatology. This is perhaps why those instruments have been so widely accepted worldwide . In order for QoL measurement to be carried out routinely in a busy clinic, it is essential that the measure used be short, easy to understand, able to be completed unaided and have a simple method of scoring .…”

Section: Discussionmentioning

confidence: 99%

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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This paper is organized jointly by the European Academy of Dermatology and Venereology (EADV) Task Force (TF) on Quality of Life (QoL) and Patient‐Oriented Outcomes and the EADV TF on acne, rosacea and hidradenitis suppurativa (ARHS). The purpose of this paper was to present current knowledge about QoL assessment in HS, including data on HS‐specific health‐related (HR) QoL instruments and HRQoL changes in clinical trials, and to make practical recommendations concerning the assessment of QoL in people with HS. HS results in significant quimp that is higher than in most other chronic skin diseases. HS impact in published studies was assessed predominantly (84% of studies) by the Dermatology Life Quality Index (DLQI). There is a lack of high‐quality clinical trials in HS patients where HRQoL instruments have been used as outcome measures. One double‐blind randomized placebo‐controlled trial on infliximab with low number of participants reported significantly better HRQoL improvement in the treatment group than in the placebo group. Well‐designed clinical studies in HS patients to compare different treatment methods, including surgical methods and assessing long‐term effects, are needed. Because of lack of sufficient validation, the Task Forces are not at present able to recommend existing HS‐specific HRQoL instruments for use in clinical studies. The EADV TFs recommend the dermatology‐specific DLQI questionnaire for use in HS patients. The EADV TFs encourage the further development, validation and use of other HS‐specific, dermatology‐specific and generic instruments but such use should be based on the principles presented in the previous publications of the EADV TF on QoL and Patient‐Oriented Outcomes.

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Section: Discussionmentioning

confidence: 99%

Quality of life measurement in hidradenitis suppurativa: position statement of the European Academy of Dermatology and Venereology task forces on Quality of Life and Patient‐Oriented Outcomes and Acne, Rosacea and Hidradenitis Suppurativa

Chernyshov

Zouboulis

Tómas-Aragonés

et al. 2019

Acad Dermatol Venereol

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“…The basic aspects of people’s lives affected by skin disease are largely the same, although with different emphases. This raised the prospect of developing a single questionnaire that could be used on patients with any skin disease, a crucial aspect of making QoL measurement practical in the clinic [9]. The most popular generic, dermatology-specific and disease-specific instruments are presented in Table 1.…”

Section: Instruments For Health-related Qol Assessment In Dermatologymentioning

confidence: 99%

“…Some measures have been based on a mixture of clinician opinion, literature review and patient input. However, for the most popular instruments used in dermatology the question content has always been based solely on the actual experiences of patients [9]. …”

Section: Instruments For Health-related Qol Assessment In Dermatologymentioning

confidence: 99%

The Evolution of Quality of Life Assessment and Use in Dermatology

Chernyshov¹

2019

Dermatology

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The creation of the Dermatology Life Quality Index (DLQI) questionnaire facilitated many studies on the impact of skin diseases on patients’ quality of life (QoL). Many national and international guidelines recommend QoL assessment in dermatology, and some of them contain detailed recommendations on treatment goals and changes of treatment approaches based on DLQI score banding and minimal clinically important difference. The methodology of QoL in strument development and validation is constantly becoming more rigorous. Initiatives on selection of core outcome sets for skin diseases are focused on clinical trials but may also be beneficial for clinicians. There are various benefits of using QoL information in clinical practice, but experience of this is very limited at the moment. QoL assessment in dermatology is a rapidly developing field with a gradual shift from theory to practice.

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“…So how did the situation arise whereby clinicians may be required to apply a sharp cut‐off to a continuum of clinical scores? To try to alter attitudes to the value of considering quality of life, and to subconsciously educate clinicians, a simple message was required . Hence, the proposal that it might be possible to define current severe psoriasis as Psoriasis Area and Severity Index (PASI) > 10, body surface area (BSA) > 10 or DLQI > 10 (the ‘Rule of Tens’) .…”

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confidence: 99%