To determine the minimal clinically important difference (MCID) of the Dermatology Life Quality Index (DLQI) and its responsiveness to change in inflammatory skin diseases.
A longitudinal study: at ...stage 1, patients completed the DLQI and a disease severity global question; at stage 2, a global rating of change in quality of life (QoL; Global Rating of Change Questionnaire, GRCQ) was added and used as an anchor to measure the MCID of the DLQI.
192 patients completed stage 1 and 107 completed stage 2. The mean DLQI score at stage 1 was 9.8 and 7.4 at stage 2 with a mean change of 2.4 (p < 0.0001). 31 patients experienced a 'small change' in their QoL (±3 and ±2) on the GRCQ. The mean corresponding change in DLQI scores was 3.3, which is regarded as the approximate MCID.
Previous estimates of the MCID of the DLQI have varied from 3 to 5. Although this study demonstrated a MCID of 3.3, we recommend that the MCID in inflammatory skin diseases should be 4.
Obituary: Professor Ronald Marks, 1935–2020 Finlay, A.Y.
British journal of dermatology (1951),
September 2020, 2020-09-00, 20200901, Letnik:
183, Številka:
3
Journal Article
A person's chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to ...understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures.
The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument.
Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference.
Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.
Broader concepts of quality of life measurement, encompassing validation Finlay, A.Y.
JEADV. Journal of the European Academy of Dermatology and Venereology/Journal of the European Academy of Dermatology and Venereology,
August 2017, 2017-Aug, 2017-08-00, 20170801, Letnik:
31, Številka:
8
Journal Article
Recenzirano
Odprti dostop
Developing and managing measures of quality of life (QoL) require attention to a range of broader concepts, in addition to meeting validation requirements. The aim of this review is to describe ...development and experience in Cardiff of these concepts and to inform users of Cardiff quality of life tools of aspects of their origin, for the benefit of developers of novel QoL measures or other patient reported outcome measures. Publications from the Cardiff team over the last three decades are used to illustrate descriptions of concepts involved in developing and managing QoL measures. The concepts are grouped into three main themes: (A) Design of tools: measurement ability turns ideas into science, QoL measurement based on patient experience, the need for tools to be clinically practical and useful with meaningful scores, different ages need tailored tools. (B) Practical management of tools: enabling ease of access, maintenance of single version, translation validity, enabling access to postpublication experience and further validation. (C) Promoting wider understanding of QoL: examples include educate thinking with disease severity definition; heighten awareness of broader burden, family impact, the time dimension and the new word quimp. The development and management of QoL and other outcome measures involves attention to a wide range of other issues, in addition to meeting validation requirements.
Summary
Background
Generic instruments measuring health‐related quality of life (HRQoL), like EQ5D™, enable comparison of skin diseases with healthy populations and nondermatological medical ...conditions, as well as calculation of utility data.
Objectives
To measure HRQoL in patients with common skin diseases and healthy controls across Europe using the EQ5D.
Methods
This multicentre observational cross‐sectional study was conducted in 13 European countries. Each dermatology clinic recruited at least 250 consecutive adult outpatients to complete questionnaires, including the EQ5D.
Results
There were 5369 participants (4010 patients and 1359 controls). Mean ± SD self‐rated health state reported by patients was 69·9 ± 19·7; for controls it was 82·2 ± 15·5. When adjusted for confounding factors, including comorbidity, mean patient EQ visual analogue scores were 10·5 points lower than for controls (standardized β = −0·23). Odds ratio with 95% confidence interval for impairment in all five dimensions of EQ5D adjusted for confounders was doubled for patients compared with controls. Patients with hidradenitis suppurativa (HS), blistering conditions, leg ulcers, psoriasis and eczemas had the highest risk for reduction in HRQoL in most dimensions (2–10‐fold). Data on differences of impairment by dimensions offer new insights.
Conclusions
This study confirms the large impact skin conditions have on patients’ well‐being, differentiating between aspects of HRQoL. Patients with HS, blistering diseases, leg ulcers, infections and most chronic skin diseases reported reduced HRQoL compared with patients with chronic obstructive lung disease, diabetes mellitus, cardiovascular disease and cancers. These findings are important in the prioritization of resource allocation between medical fields and within dermatological subspecialities.
What is already known about this topic?
The EQ5D™ can be used to compare life quality impairment from diseases across a range of specialties and to generate utility data.
The EQ5D has previously been little used in dermatology.
What does this study add?
This study has generated EQ5D data across a range of dermatological diagnoses in a large cohort of patients across Europe.
Skin diseases affect quality of life differently across different dimensions.
This EQ5D information may assist appropriate care and resource allocation.
Respond to this article
Summary
This article reviews an aspect of daily clinical practice which is of critical
importance in virtually every clinical consultation, but which is seldom formally
considered. Non-clinical ...influences on clinical decision-making profoundly affect
medical decisions. These influences include patient-related factors such as
socioeconomic status, quality of life and patient's expectations and wishes,
physician-related factors such as personal characteristics and interaction with their
professional community, and features of clinical practice such as private versus
public practice as well as local management policies. This review brings together the
different strands of knowledge concerning non-clinical influences on clinical
decision-making. This aspect of decision-making may be the biggest obstacle to the
reality of practising evidence-based medicine. It needs to be understood in order to
develop clinical strategies that will facilitate the practice of evidence-based
medicine.
Summary
Background
The use of patient‐reported outcome measures in electronic format has been increasing. However, these formats are usually not validated or compared with the original paper‐based ...formats, so there is no evidence that they are completed in the same way.
Objectives
To compare the conventional paper version with a web‐based application (iPad®) version of the Dermatology Life Quality Index (DLQI) to assess equivalence of scores.
Methods
The study employed a randomized crossover design using a within‐subjects comparison of the two formats of the questionnaire. International Society for Pharmacoeconomics and Outcomes Research (ISPOR) guidelines were followed. Participants aged over 18 years with any confirmed skin condition were recruited from a teaching hospital dermatology outpatient clinic. Expected intraclass correlation coefficient (ICC) was 0·9 (α = 0·05).
Results
A total of 104 patients were recruited, median age 53·5 years (interquartile range 37·3–67·8; 43% male). The ICC showed high concordance between the total DLQI scores from paper and iPad versions (ICC 0·98; 95% confidence interval 0·97–0·99). Patients took a median of 78 s to complete the electronic version and 73 s for paper (P = 0·008): 76% preferred the electronic version and perceived completion to take a shorter time.
Conclusions
There is high concordance and thus equivalence between the iPad and paper versions of the DLQI, with an ICC of 0·98, and a clear patient preference for the iPad version.
What's already known about this topic?
The use of patient‐reported outcome measures (PROs) in electronic format has been increasing.
Electronic formats are usually not validated or compared with their original paper‐based formats, but are assumed without evidence to be comparable.
The benefits of using electronic PROs include portability, real‐time monitoring of patients’ quality of life and improved data capture.
What does this study add?
There is equivalence between completing the Dermatology Life Quality Index (DLQI) on paper and in an electronic format.
Patients prefer the electronic format to the paper version although the electronic format takes slightly longer to complete.
This equivalence testing of the electronic format of the DLQI with the paper version will reassure and encourage such use in clinical and research settings.
What are the clinical implications of this work?
The DLQI application (app) will increase routine assessment of quality of life with negligible addition to consultation time.
The DLQI app may facilitate transfer of patient data to electronic records, potentially being incorporated into referral systems from primary care.
It is hoped the results of this study will encourage validation of other patient‐reported outcome measures in electronic format in dermatology and other medical specialties.
Linked Comment: Bottomley. Br J Dermatol 2017; 177:1157–1158.
Plain language summary available online
Respond to this article
PDF
