Quality of Life Issues in Dermatology, An Issue of Dermatologic Clinics

Suephy C. Chen

Description

This issue defines the concepts and outlines the concerns surrounding quality of life issues in dermatology. Articles review the concepts of general versus disease-specific measures and include Patient Preference QOL Measures, and Review of Children and Family QOL Measures. Disease specific QOL topics are also included, such as Melanoma, Acne, and Eczema.

Sujets

• Medical
• Médecine
• Dermatology

Informations

• Publié par: Saunders
• Date de parution: 28 avril 2012
• Nombre de lectures: 0
• EAN13: 9781455743988
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

Dermatologic Clinics , Vol. 30, No. 2, April 2012
ISSN: 0733-8635
doi: 10.1016/S0733-8635(12)00016-2

Contributors
Dermatologic Clinics
Quality of Life Issues in Dermatology
Suephy C. Chen, MD, MS
Department of Dermatology, Emory University, 101 Woodruff Circle, Atlanta, GA 30322, USA
ISSN  0733-8635
Volume 30 • Number 2 • April 2012

Contents

Contributors
Forthcoming Issues
Preface
Health-Related Quality of Life in Dermatology: Introduction and Overview
Overview of Health Status Quality-of-Life Measures
Preference-Based Measures in Dermatology: An Overview of Utilities and Willingness to Pay
The Skindex Instruments to Measure the Effects of Skin Disease on Quality of Life
A Review of the Use of the Dermatology Life Quality Index as a Criterion in Clinical Guidelines and Health Technology Assessments in Psoriasis and Chronic Hand Eczema
Health-Related Quality of Life in Patients with Melanoma: Overview of Instruments and Outcomes
Quality-of-Life Issues in Vitiligo
Melasma Quality of Life Measures
Quality-of-Life Instruments: Evaluation of the Impact of Psoriasis on Patients
Quality of Life Measures for Acne Patients
Quality-of-Life Measurement in Blistering Diseases
Pruritus
Health-Related Quality-of-Life Assessment in Dermatologic Practice: Relevance and Application
Clinical Meaning in Skin-specific Quality of Life Instruments: A Comparison of the Dermatology Life Quality Index and Skindex Banding Systems
Future Directions in Dermatology Quality of Life Measures
Index
Dermatologic Clinics , Vol. 30, No. 2, April 2012
ISSN: 0733-8635
doi: 10.1016/S0733-8635(12)00018-6

Forthcoming Issues
Dermatologic Clinics , Vol. 30, No. 2, April 2012
ISSN: 0733-8635
doi: 10.1016/j.det.2011.11.014

Preface

Suephy C. Chen, MD, MS
Division of Dermatology, Atlanta Veterans Affairs Medical Center, Decatur, GA 30322, USA
Department of Dermatology, Emory University, 101 Woodruff Circle, Atlanta, GA 30322, USA
E-mail address: [e-mail]


Suephy C. Chen, MD, MS, Guest Editor
Health-related quality of life (HRQoL) is increasingly being recognized as an important parameter to consider in research as well as in patient care. In fact, the Healthy People 2020 initiative, developed by lead federal agencies, such as the Centers for Disease Control and Prevention, Agency for Healthcare Research and Quality, National Institutes of Health, and Food and Drug Administration, to name a few, has named “health-related quality of life and well-being” as a new topic area for this decade as a high-priority national health objective.
HRQoL is particularly important in dermatology because a major goal of dermatology is to improve quality of life as it relates to the skin. In this issue of Dermatology Clinics , an attempt is made to organize a compendium of articles from experts in the field that address the HRQoL impact of different dermatologic conditions ranging from the relatively common (acne) to the more rare (blistering disorders) and also ranging from the chronic diseases (psoriasis) to the cancers (nonmelanoma and melanoma). Issues and applications for the practicing clinician as well as for researchers are carefully delineated.
I am grateful to all the authors for their countless hours and effort to this edition. I also want to thank Bruce Theirs for the opportunity to guest edit this issue and Stephanie Donley for her professional editorial assistance. Last, I want to recognize my family for their support of this scholarly endeavor.
Dermatologic Clinics , Vol. 30, No. 2, April 2012
ISSN: 0733-8635
doi: 10.1016/j.det.2011.12.001

Health-Related Quality of Life in Dermatology: Introduction and Overview

Suephy C. Chen, MD, MS a , b , *
a Division of Dermatology, Atlanta Veterans Affairs Medical Center, Decatur, GA 30322, USA
b Department of Dermatology, Emory University, 101 Woodruff Circle, Atlanta, GA 30322, USA
* Department of Dermatology, Emory University, 101 Woodruff Circle, Atlanta, GA 30322.
E-mail address: [e-mail]

Abstract
Improvement of health-related quality of life (HRQoL) is a major goal of dermatology. Identifying how the skin condition affects lives, quantifying this burden, and using this information to improve patients' lives on an individual basis are important targets in clinical dermatology. Using this information in clinical trials and on a health policy level is the objective of QoL research. This article introduces a compendium of articles that address HRQoL in dermatology across a spectrum of diseases and ways that HRQoL can be incorporated in the clinical and research settings.

Keywords
• Health-related quality of life • Health status instruments • Dermatology • Guidelines
The World Health Organization defines quality of life (QoL) as “the individuals’ perception of their position in life, in the context of the cultural and value system in which they live and in relation to their goals, expectations, standards and concerns.” 1 QoL is a multidimensional construct used to evaluate the general well-being of an individual and encompasses physical, functional, emotional, social, and family well-being. 2 Although QoL can be influenced by nonmedical factors, such as environmental, financial status, political, and other phenomenon, health-related QoL (HRQoL) is a more limited concept that captures the effects of a health condition on a persons’ quality of life, as perceived by that person.
HRQoL is particularly important in dermatology because a major goal of dermatology is to improve QoL as it relates to the skin. Although there are a few dermatologic conditions that can affect survival, such as melanoma, cutaneous T-cell lymphomas, and Merkel cell carcinomas, most dermatologic conditions do not shorten life expectancy. Rather, most dermatologic conditions affect patients’ lives in a physical, emotional, or functional manner. Identifying how a skin condition affects lives, quantifying this burden, and using this information to improve patients’ lives on an individual basis are important targets in clinical dermatology. Using this information in clinical trials and on a health policy level is the goal of QoL research. As such, HRQoL can be viewed as another “vital sign” that should be consistently measured in dermatology. 3

Recommendations from the International DermatoEpidemiology Association meeting
This introduction would not be complete without citing findings and recommendations from the last International DermatoEpidemiology Association (IDEA) meeting held jointly with the Americas DermatoEpidemiology Network (ADEN) in Nottingham, Great Britain, in 2008. This meeting, which occurs every 3 to 4 years, invites dermatologists interested in epidemiology, outcomes research, and health services research to convene to share research ideas and interests. This particular meeting was also charged with making broad recommendations to improve research and reporting in three aspects of the burden of skin disease: (1) epidemiology, (2) QoL, and (3) economics. This article focuses on the QoL discussion.

Health Status Versus HRQoL
The first major concern of the IDEA group was a lack of consensus and thus transparency in research of the construct being measured: HRQoL versus health status. Although many investigators use health status and HRQoL interchangeably, others distinguish measures of health status from true QoL instruments. HRQoL refers to domains of health that are important to patients’ QoL and takes into account the patient’s own expectations or internal standards. Health status questionnaires are standardized for “typical patients” and as such, scores provide measures of the effects of disease or treatment, but do not measure the impact of the disease itself or the probability of benefit of treatment to the patient. 4, 5 The term “HRQoL” is also considered problematic by some in that although health impacts QoL, health cannot be equated with QoL. There are those in bad health and good QoL, and vice versa. Additionally, researchers claim that HRQoL implies that QoL can be separated into health and nonhealth, although there is little evidence that patients can make this distinction when reflecting on their own QoL. 6
Supporting this concern is a review of 75 articles that reported to evaluate HRQoL by Gill and Feinstein. 7 The authors found that only 15% of these papers provided conceptual definitions of HRQoL or health status. HRQoL was often used as a generic label for an assortment of physical functioning and psychosocial variables. Smith and colleagues 6 performed a structural equation analysis of several published papers. Their goal was to determine whether health status (defined by them as “perceived health”) differs from HRQoL. They found that perceived health most strongly related to physical functioning, energy and fatigue, and pain, whereas HRQoL related more to mental health. They concluded that only two domains, mental health and physical functioning, are key determinants of HRQoL judgment. Other domains, such as social support or cognitive functioning, are relevant to HRQoL only to the extent that they affect mental or physical functioning. Implications for HRQoL research from their research are that questionnaires designed to measure health status may be inappropriate for assessing HRQoL. Those measures that do not tap psychologic functioning may be inadequate for monitoring HRQoL.

Streamlining of HRQoL and Health Status Instruments
Another concern from the IDEA gr