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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Over recent decades there have been tremendous advances in the treatment of patients with heart disease&#44;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">1</span></a> leading to significant increases in overall life span&#46; As people live longer&#44; the importance of how they live their lives has become the focus of patient-reported outcome measures&#44; with patients ultimately having to assess whether or not a treatment has been effective&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">2</span></a> There is a clear scientific and practical need to answer the following questions&#58; What do we know about the quality of their additional life years&#63; How do patients perceive their life after a particular procedure &#40;e&#46;g&#46; heart surgery&#41; or with a continuing treatment &#40;e&#46;g&#46; device therapy&#41;&#63; What can we tell patients to expect from life after being treated&#63;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">3&#44;4</span></a> Hence&#44; population-based studies such as that by Tim&#243;teo et al&#46; published in this issue of the <span class="elsevierStyleItalic">Journal</span><a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">5</span></a> are of importance to estimate patients&#8217; quality of life &#40;QoL&#41; in naturalistic settings&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">Evaluation of existing and new therapies has traditionally focused on outcomes of disease progression&#44; such as sudden death&#44; survival rates&#44; or hospital &#40;re&#41;admission&#44; or&#44; increasingly&#44; on costs &#40;direct and indirect&#41;&#46; The patient&#39;s health status &#8211; symptoms&#44; functional status or health-related QoL &#40;HRQoL&#41; &#8211; has only recently become the subject of research&#46; Nevertheless&#44; patients have always undergone assessment of symptoms and functional status&#46; Cardiology was among the first clinical disciplines to develop a measurement of functional status&#44; the New York Heart Association classification&#46;<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">3</span></a> However&#44; these functional status measurements have been used from the physician&#39;s point of view and were never designed to capture the point of view of the individual patient&#46; The question is&#58; which matters most to a patient&#58; maximum heart rate or VO<span class="elsevierStyleInf">2max</span>&#44; or the ability to perform daily activities and take part in everyday social life&#63; QoL research aims to address the core principle that what matters is patients and their view&#46; A basic principle of QoL research is that QoL is uniquely perceived by a person and is thus a patient&#39;s assessment of their own health and QoL that has not been interpreted by a clinician or anyone else&#46; QoL as an outcome measure focuses on the impact of a condition and its treatment on the patient&#39;s emotional&#44; physical and social functioning and well-being&#46;<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">4</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Reliable and valid instruments for assessing patient-reported outcomes&#44; including HRQoL&#44; for patients with heart disease&#44; have been successfully developed on an international basis &#40;e&#46;g&#46; the MacNew Heart Disease health-related quality of life<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">6</span></a> and HeartQoL instruments<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">7</span></a>&#41;&#46; Factors influencing patient-reported QoL have been identified<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">8</span></a> and QoL scores successfully predict long-term outcomes including rehospitalization and mortality&#44;<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">9&#44;10</span></a> making them one of the most meaningful clinical tools&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">As well as being an accepted outcome criterion&#44; HRQoL assessment can also change the way patients and physicians interact with each other&#46; Doctor-patient communication is an important and complex process of building a working relationship based on trust&#46; Patients are more confident in decisions in which they perceived more involvement or which were the products of longer consultation&#46;<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">11</span></a> The integration of HRQoL assessments into routine clinical practice can change the way patients and physicians communicate with each other and improve treatment outcomes&#46;<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">12&#44;13</span></a> Assessment methods&#44; including on paper&#44; by telephone&#44; or via a computer or other electronic device&#44; are readily available to foster implementation in clinical practice&#46; The choice of mode of administration may be determined by the setting in which patients complete patient-reported outcome assessments&#44; e&#46;g&#46; paper-based instruments may be feasible in clinics if staff are available to hand out&#44; collect and score questionnaires&#44; the use of touch-screens is known to be feasible in the clinic but requires investment in hardware and software&#44; while web-based modes of administration enables completion at home and therefore at times other than scheduled clinic visits&#46;<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">14</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">Despite the practical and clinical relevance of QoL research in health care&#44; there are still scientific challenges that require further detailed research&#46; One very basic challenge that is not fully resolved relates to the meaning and interpretation of QoL scores&#44; in particular change scores&#46; This is a high-priority issue&#44; as patient-reported outcome measures are increasingly used for decisions concerning patient-centered care and policy&#46; Changes in QoL scores can have different meanings from different perspectives&#44; such as the societal perspective&#44; in which differences may be small considering overall population levels&#44; or from an institutional perspective&#44; which focuses on the degree of change required to influence health care policies&#46; These may very well contrast with the individual perspective&#44; which focuses on the meaningful change of QoL for an individual&#46; The minimal important difference &#40;MID&#41; is an important patient-centered concept that captures both the magnitude of improvement and the value patients place on the change&#46; MID and minimal clinically important difference &#40;MCID&#41; are often used synonymously in the literature&#44; making it more difficult to differentiate these concepts&#46; A recent literature review revealed that the methodology to develop MIDs&#47;MCIDs is not consistently applied and varies between anchor-based and distribution-based methods&#46; Furthermore&#44; most MIDs are reported as single numbers&#44; without information about the confidence intervals around them&#46;<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">15</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">A second important challenge relating to interpreting change scores in QoL is the dilemma of the response-shift phenomenon&#46;<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">16</span></a> Individuals actively construct meaning from their environment&#44; and display a range of cognitive mechanisms to continually adapt to changing circumstances&#46; Response shift refers to a change in the meaning of an individual&#39;s assessment of a construct &#40;such as QoL&#41; as a result of a change in their internal standards of measurement&#44; values&#44; or definition of the construct&#46; These changes may result from external factors such as treatment&#44; a change in health status or other circumstances&#44; but also from within the individual&#46; Three different types of response shift have been described<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">16</span></a>&#58; reconceptualization &#40;change in the definition of the target construct&#41;&#44; recalibration &#40;change in internal standards of measurement&#41;&#44; and reprioritization &#40;change in values&#41;&#46; Repeated measurements as standard methodology in clinical trials may be affected by response shift phenomena&#46; The variety of potential changes has important implications for the ability to reliably assess the true effects of treatments&#46; Change in QoL scores may reflect a response shift&#44; a true treatment effect&#44; or a complex combination of both&#44; and conversely&#44; an absence of identified change over time may be masked by response shift&#46;<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">17</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">Summarizing&#44; QoL is a key patient-reported outcome measure in cardiology&#46; With valid and reliable measures readily available to assess QoL in heart disease patients&#44; routine QoL assessment in clinical practice can easily be implemented via different feasible modes of administrations&#46; Further efforts are needed to address the interpretation of QoL scores in cardiology&#44; making them more meaningful for clinical routine practice&#46;</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Conflicts of interest</span><p id="par0040" class="elsevierStylePara elsevierViewall">The author has no conflicts of interest to declare&#46;</p></span></span>"
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Editorial comment
Health-related quality of life in heart disease
Qualidade de vida e saúde na doença cardíaca
Stefan Höfer
Department of Medical Psychology, Medical University Innsbruck, Innsbruck, Austria
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    "textoCompleto" => "<span class="elsevierStyleSections"><p id="par0005" class="elsevierStylePara elsevierViewall">Over recent decades there have been tremendous advances in the treatment of patients with heart disease&#44;<a class="elsevierStyleCrossRef" href="#bib0090"><span class="elsevierStyleSup">1</span></a> leading to significant increases in overall life span&#46; As people live longer&#44; the importance of how they live their lives has become the focus of patient-reported outcome measures&#44; with patients ultimately having to assess whether or not a treatment has been effective&#46;<a class="elsevierStyleCrossRef" href="#bib0095"><span class="elsevierStyleSup">2</span></a> There is a clear scientific and practical need to answer the following questions&#58; What do we know about the quality of their additional life years&#63; How do patients perceive their life after a particular procedure &#40;e&#46;g&#46; heart surgery&#41; or with a continuing treatment &#40;e&#46;g&#46; device therapy&#41;&#63; What can we tell patients to expect from life after being treated&#63;<a class="elsevierStyleCrossRefs" href="#bib0100"><span class="elsevierStyleSup">3&#44;4</span></a> Hence&#44; population-based studies such as that by Tim&#243;teo et al&#46; published in this issue of the <span class="elsevierStyleItalic">Journal</span><a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">5</span></a> are of importance to estimate patients&#8217; quality of life &#40;QoL&#41; in naturalistic settings&#46;</p><p id="par0010" class="elsevierStylePara elsevierViewall">Evaluation of existing and new therapies has traditionally focused on outcomes of disease progression&#44; such as sudden death&#44; survival rates&#44; or hospital &#40;re&#41;admission&#44; or&#44; increasingly&#44; on costs &#40;direct and indirect&#41;&#46; The patient&#39;s health status &#8211; symptoms&#44; functional status or health-related QoL &#40;HRQoL&#41; &#8211; has only recently become the subject of research&#46; Nevertheless&#44; patients have always undergone assessment of symptoms and functional status&#46; Cardiology was among the first clinical disciplines to develop a measurement of functional status&#44; the New York Heart Association classification&#46;<a class="elsevierStyleCrossRef" href="#bib0100"><span class="elsevierStyleSup">3</span></a> However&#44; these functional status measurements have been used from the physician&#39;s point of view and were never designed to capture the point of view of the individual patient&#46; The question is&#58; which matters most to a patient&#58; maximum heart rate or VO<span class="elsevierStyleInf">2max</span>&#44; or the ability to perform daily activities and take part in everyday social life&#63; QoL research aims to address the core principle that what matters is patients and their view&#46; A basic principle of QoL research is that QoL is uniquely perceived by a person and is thus a patient&#39;s assessment of their own health and QoL that has not been interpreted by a clinician or anyone else&#46; QoL as an outcome measure focuses on the impact of a condition and its treatment on the patient&#39;s emotional&#44; physical and social functioning and well-being&#46;<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">4</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Reliable and valid instruments for assessing patient-reported outcomes&#44; including HRQoL&#44; for patients with heart disease&#44; have been successfully developed on an international basis &#40;e&#46;g&#46; the MacNew Heart Disease health-related quality of life<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">6</span></a> and HeartQoL instruments<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">7</span></a>&#41;&#46; Factors influencing patient-reported QoL have been identified<a class="elsevierStyleCrossRef" href="#bib0125"><span class="elsevierStyleSup">8</span></a> and QoL scores successfully predict long-term outcomes including rehospitalization and mortality&#44;<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">9&#44;10</span></a> making them one of the most meaningful clinical tools&#46;</p><p id="par0020" class="elsevierStylePara elsevierViewall">As well as being an accepted outcome criterion&#44; HRQoL assessment can also change the way patients and physicians interact with each other&#46; Doctor-patient communication is an important and complex process of building a working relationship based on trust&#46; Patients are more confident in decisions in which they perceived more involvement or which were the products of longer consultation&#46;<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">11</span></a> The integration of HRQoL assessments into routine clinical practice can change the way patients and physicians communicate with each other and improve treatment outcomes&#46;<a class="elsevierStyleCrossRefs" href="#bib0145"><span class="elsevierStyleSup">12&#44;13</span></a> Assessment methods&#44; including on paper&#44; by telephone&#44; or via a computer or other electronic device&#44; are readily available to foster implementation in clinical practice&#46; The choice of mode of administration may be determined by the setting in which patients complete patient-reported outcome assessments&#44; e&#46;g&#46; paper-based instruments may be feasible in clinics if staff are available to hand out&#44; collect and score questionnaires&#44; the use of touch-screens is known to be feasible in the clinic but requires investment in hardware and software&#44; while web-based modes of administration enables completion at home and therefore at times other than scheduled clinic visits&#46;<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">14</span></a></p><p id="par0025" class="elsevierStylePara elsevierViewall">Despite the practical and clinical relevance of QoL research in health care&#44; there are still scientific challenges that require further detailed research&#46; One very basic challenge that is not fully resolved relates to the meaning and interpretation of QoL scores&#44; in particular change scores&#46; This is a high-priority issue&#44; as patient-reported outcome measures are increasingly used for decisions concerning patient-centered care and policy&#46; Changes in QoL scores can have different meanings from different perspectives&#44; such as the societal perspective&#44; in which differences may be small considering overall population levels&#44; or from an institutional perspective&#44; which focuses on the degree of change required to influence health care policies&#46; These may very well contrast with the individual perspective&#44; which focuses on the meaningful change of QoL for an individual&#46; The minimal important difference &#40;MID&#41; is an important patient-centered concept that captures both the magnitude of improvement and the value patients place on the change&#46; MID and minimal clinically important difference &#40;MCID&#41; are often used synonymously in the literature&#44; making it more difficult to differentiate these concepts&#46; A recent literature review revealed that the methodology to develop MIDs&#47;MCIDs is not consistently applied and varies between anchor-based and distribution-based methods&#46; Furthermore&#44; most MIDs are reported as single numbers&#44; without information about the confidence intervals around them&#46;<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">15</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">A second important challenge relating to interpreting change scores in QoL is the dilemma of the response-shift phenomenon&#46;<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">16</span></a> Individuals actively construct meaning from their environment&#44; and display a range of cognitive mechanisms to continually adapt to changing circumstances&#46; Response shift refers to a change in the meaning of an individual&#39;s assessment of a construct &#40;such as QoL&#41; as a result of a change in their internal standards of measurement&#44; values&#44; or definition of the construct&#46; These changes may result from external factors such as treatment&#44; a change in health status or other circumstances&#44; but also from within the individual&#46; Three different types of response shift have been described<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">16</span></a>&#58; reconceptualization &#40;change in the definition of the target construct&#41;&#44; recalibration &#40;change in internal standards of measurement&#41;&#44; and reprioritization &#40;change in values&#41;&#46; Repeated measurements as standard methodology in clinical trials may be affected by response shift phenomena&#46; The variety of potential changes has important implications for the ability to reliably assess the true effects of treatments&#46; Change in QoL scores may reflect a response shift&#44; a true treatment effect&#44; or a complex combination of both&#44; and conversely&#44; an absence of identified change over time may be masked by response shift&#46;<a class="elsevierStyleCrossRef" href="#bib0170"><span class="elsevierStyleSup">17</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">Summarizing&#44; QoL is a key patient-reported outcome measure in cardiology&#46; With valid and reliable measures readily available to assess QoL in heart disease patients&#44; routine QoL assessment in clinical practice can easily be implemented via different feasible modes of administrations&#46; Further efforts are needed to address the interpretation of QoL scores in cardiology&#44; making them more meaningful for clinical routine practice&#46;</p><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0005">Conflicts of interest</span><p id="par0040" class="elsevierStylePara elsevierViewall">The author has no conflicts of interest to declare&#46;</p></span></span>"
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