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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Mastocytosis encompasses a heterogeneous group of conditions characterized by clonal proliferation of mast cells&#46; Various organs and tissues can be affected&#46; Mastocytosis is rare&#44; as indicated by an estimated prevalence of 9 to 13 adult cases per 100 000 population for the indolent systemic form&#46;<a class="elsevierStyleCrossRefs" href="#bib0005"><span class="elsevierStyleSup">1&#44;2</span></a> Although mastocytosis is more frequent in the first decade of life and between the second and fifth decades&#44; it can manifest at any age and affects both sexes similarly&#46;<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3&#44;4</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Signs and symptoms &#40;such as pruritus&#44; erythema&#44; palpitations&#44; headache&#44; abdominal pain&#44; diarrhea&#44; hypotension&#44; irritability&#44; and anaphylaxis among others&#41; are related to the release of proinflammatory mediators that infiltrate organs and tissues&#59; other associated hematologic conditions may also be present&#46;<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3&#44;5&#8211;10</span></a> Skin involvement is the most common sign &#8212; present in all pediatric cases and 80&#37; of adult cases &#8212; and often provides the key to diagnosing the disease&#46;<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3&#44;9&#44;11</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Although clinical signs are heterogeneous and variable&#44; the condition develops slowly in most patients&#46; Nonetheless&#44; several studies have reported a significant impact on patients&#8217; quality of life &#40;QoL&#41;&#44;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">12</span></a> as a consequence of both the symptoms themselves and the need for continuous treatments to alleviate or prevent them&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> QoL improvement is a main objective in managing mastocytosis&#44; and results obtained with health related QoL questionnaires have become increasingly important in both routine clinical practice and the conduct of clinical trials&#46; Such questionnaires provide information from the patient&#8217;s perspective and prevent loss of useful information noted during the clinical evaluation of individuals&#46;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">Health related QoL tools for specific diseases or symptoms provide more solid evidence than generic questionnaires&#46; A specific tool for mastocytosis was unavailable&#44; however&#44; until the German group of Siebenhaar et al<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> developed and validated the Mastocytosis QoL &#40;MC-QoL&#41; questionnaire for adults with skin manifestations of indolent systemic mastocytosis&#46; &#40;See online supplementary material&#44; Appendix&#44; Fig&#46; 1&#44; the German Version&#44; and Fig&#46; 2&#44; the American English version&#46;&#41; The MC-QoL is a significant step forward in the evaluation of the psychological and social impact of this disease&#46;</p><p id="par0025" class="elsevierStylePara elsevierViewall">Our aim was to translate and culturally adapt the MC-QoL to peninsular Spanish&#44; preserving its equivalence to the original version&#44; so that it could be used in routine clinical practice in Spain&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Material and Methods</span><p id="par0030" class="elsevierStylePara elsevierViewall">The MC-QoL is composed of 27 questions in 4 domains&#58; general symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin symptoms&#46; Each question has 5 possible answers&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">We followed published guidelines when planning the translation and adaptation process&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#8211;20</span></a> Particularly important were the principles of good practice by the International Society for Pharmacoeconomics and Outcomes Research &#40;ISPOR&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">17</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">The method involved translation and back translation in the following stages&#58; translation of the original German questionnaire to Spanish by a bilingual translator &#40;native language&#44; peninsular Spanish&#41;&#44; patient interviews for cognitive debriefing&#44; and finally back translation of the Spanish version to German by another bilingual translator &#40;native language&#44; German&#41; for review by the authors of the original German questionnaire &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0045" class="elsevierStylePara elsevierViewall">The working group was made up of 2 Spanish dermatologists&#44; a German dermatologist expert in mastocytosis&#44; 2 professional bilingual translators&#44; and an expert in the validation of questionnaires&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">Interviews for cognitive debriefing were conducted with patients in order to ensure their correct understanding of concepts in the questionnaire&#46; All 6 patients interviewed were being treated for mastocytosis in our hospital&#46; They had different sociodemographic profiles and were diagnosed with either indolent systemic or cutaneous mastocytosis&#46; All diagnoses were confirmed by bone marrow or skin biopsy&#46; Three were men and 3 were women&#46; Their mean age was 45&#46;7 years &#40;median&#44; 49 years&#41;&#46; Two had cutaneous mastocytosis and 4 had the indolent systemic form&#46;</p><p id="par0055" class="elsevierStylePara elsevierViewall">The principal investigator explained the type of study and its objectives in detail to all 6 patients and described the questionnaire&#46; The patients gave their written informed consent to participation&#46; Verbal probing was used during the cognitive debriefing sessions&#44;<a class="elsevierStyleCrossRefs" href="#bib0095"><span class="elsevierStyleSup">19&#8211;22</span></a> and the patients followed a structured protocol&#44; as follows&#58; they read all sections of the questionnaire aloud&#44; starting with the instructions and each question one by one&#44; answering them as they went along&#46; During this process&#44; the patients were asked to explain in their own words what they had just read and to point out parts of the text that seemed confusing or difficult to interpret&#46; The participants&#8217; expressions&#44; comments&#44; and even their gestures were noted in case they might indicate where the questionnaire was difficult to understand&#46; They were also asked whether they might have expressed something differently or if they could have understood something better if different phrasing had been used&#46; Their answers were carefully and literally noted so that the working group could evaluate them afterwards&#46; Interviews lasted about 20 to 30&#8239;minutes&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">After review and protocolized discussion of the results&#44; the working group produced a second draft of the questionnaire for professional back translation to German and review by the original authors&#46; A third Spanish version was created based on the original authors&#8217; comments and suggestions and once again back translated to German for another evaluation&#46; One question required further revision and a few small changes were made to produce the fourth and final version of the adapted Spanish MC-QoL&#46; &#40;See online supplementary material&#44; Appendix&#44; Fig&#46; 3&#44; the final Spanish version&#46;&#41;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Results</span><p id="par0065" class="elsevierStylePara elsevierViewall">Several revisions were made as a result of the cognitive interviews&#44; during which the patients revealed their comprehension difficulties and the interviewer recorded their suggestions&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall">First&#44; small changes were made in 2 sentences in the general instructions&#46;<a class="elsevierStyleCrossRef" href="#fn0005">&#42;</a> &#40;See online supplementary material&#44; Appendix B&#44; Figs&#46; 1&#44; German&#44; and 2&#44; English&#46;&#41; Several words were changed in the drafted sentence saying&#44; &#8220;Please read each question with attention and select from among the 5 options the one that is most appropriate for you&#46;&#8221; The Spanish draft was changed in the final version to&#44; &#8220;Please read each question <span class="elsevierStyleItalic">carefully</span> &#40;in Spanish&#44; the word was <span class="elsevierStyleItalic">detenidamente</span>&#44; implying attending to detail&#44; not rushing&#41; and select from among 5 options <span class="elsevierStyleItalic">the one that best corresponds to your situation</span>&#46;&#8221; The words or phrases shown in italics mark the points of revision&#46; These changes were made because the literal translation from German to Spanish placed emphasis on elements that did not help the reader&#46; Also changed&#44; in the interest of easier comprehension&#44; was the first-version sentence&#44; &#8220;Don&#8217;t think too much &#40;in Spanish&#44; <span class="elsevierStyleItalic">demasiado</span>&#41; about your answer and don&#8217;t forget to answer all the questions&#46;&#8221; The revised version was &#8220;<span class="elsevierStyleItalic">Please</span> don&#8217;t think <span class="elsevierStyleItalic">much</span> about your answer and <span class="elsevierStyleItalic">make sure you answer</span> all the questions&#46;&#8221;</p><p id="par0075" class="elsevierStylePara elsevierViewall">Minimal changes were also made in the 5 possible answers for some of the questions &#40;eg&#44; from <span class="elsevierStyleItalic">un poco</span> &#91;&#8220;a little&#8221;&#93; to <span class="elsevierStyleItalic">poco</span> &#91;&#8220;little&#8221;&#93; and from much&#237;simo &#91;&#8220;a great deal&#8221; or &#8220;very much&#8221;&#93; to <span class="elsevierStyleItalic">extremadamente</span> &#91;&#8220;extremely&#8221;&#93; given that these modifications made more sense in relation to the Spanish wording of the questions&#46;</p><p id="par0080" class="elsevierStylePara elsevierViewall">Three of the 27 questions &#40;numbers 13&#44; 18&#44; and 25&#41; were revised&#46; Question 13 required the addition of some examples to enable better patient understanding&#44; as it seemed vague without them &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; Question 25&#44; which asked whether the patient <span class="elsevierStyleItalic">se sinti&#243; solo&#47;a</span> &#40;&#8220;felt lonely&#8221;&#41; was not entirely clear to some patients&#44; so a Spanish paraphrase of the concept&#44; <span class="elsevierStyleItalic">o sin apoyo</span> &#40;&#8220;or without support&#8221;&#41;&#44; was added to make the concept more concrete and easier to grasp &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; Finally&#44; question 18 was the most problematic&#44; and the only one that was revised by the original version&#8217;s authors after back translation&#46; The phrase <span class="elsevierStyleItalic">ha notado la carga de los s&#237;ntomas</span> &#40;&#8220;have noticed the burden of the symptoms&#8221;&#41; was changed because it had been translated too literally and the Spanish word <span class="elsevierStyleItalic">carga</span> &#40;&#8220;burden&#8221;&#41; did not seem to be semantically equivalent to its corresponding words in German or English&#44; creating a comprehension problem for patients&#46; A small change &#8212; the addition of <span class="elsevierStyleItalic">o el peso</span> &#40;&#8220;or the weight&#8221;&#41; &#8212; failed to reflect the main purpose of the question&#44; leaving it difficult to understand correctly&#46; Therefore&#44; in collaboration with the authors of the original German questionnaire&#44; an attempt was made to explain the concept &#8212; as feeling <span class="elsevierStyleItalic">agobiado o sobrecargado</span> &#40;&#8220;overwhelmed or overburdened&#8221;&#41; in Spanish &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41; rather than just look for target-language synonyms to translate the concept of &#8220;burden&#8221; by itself&#46; However&#44; the authors of the original still felt the specificity of the original German phrase&#44; which refers to emotional burden&#44; had been lost&#46; Finally&#44; consensus was reached among all parties involved&#44; and a minimal change was made&#44; with the addition of the word <span class="elsevierStyleItalic">emocionalmente</span> &#40;&#8220;emotionally&#8221;&#41; to the Spanish question &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41;&#46; Thus&#44; agreement on the final version of the questionnaire in Spanish was reached&#46; &#40;See online supplementary material&#44; Appendix B&#44; Fig&#46; 3&#44; the final Spanish version&#46;&#41; The format of the questionnaire did not have to be modified&#44; as it seemed simple and intuitive to all the patients interviewed&#46;</p><elsevierMultimedia ident="fig0010"></elsevierMultimedia><elsevierMultimedia ident="fig0015"></elsevierMultimedia></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Discussion</span><p id="par0085" class="elsevierStylePara elsevierViewall">A wide range of tools are currently available for evaluating and quantifying the impact of different diseases on QoL&#44; and dermatology makes use of both general and disease-specific ones&#46; Even though the literature on mastocytosis shows that a large number of patients with this disease find that their daily life is affected by symptoms&#44;<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">12&#44;15</span></a> before the MC-QoL was developed no specific tool was available&#46; This questionnaire therefore represents a significant step forward in the clinical evaluation of patients with mastocytosis&#46;</p><p id="par0090" class="elsevierStylePara elsevierViewall">The MC-QoL was developed and validated in Germany&#44; in patients diagnosed with cutaneous or indolent systemic mastocytosis&#46; The American English translation was validated and published at the same time&#46; The MC-QoL is a simple 27-item questionnaire that can be administered quickly&#46; Each item is answered by choosing from among 5 options&#44; each of which counts from 0 to 4 points toward a score&#46; The tool has 4 domains related to different aspects of the disease and patients&#8217; daily life&#58; general symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin symptoms&#46; Domain and total scores are calculated by adding up points for individual answers and then expressing the result on a scale from 0 to 100&#44; where higher scores indicate better QoL&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a></p><p id="par0095" class="elsevierStylePara elsevierViewall">The validity and reliability of the new tool&#44; in terms of both total and domain scores&#44; were high&#46; Nearly all domain scores had high internal validity statistics&#46; The exception was skin symptoms&#44; which had slightly lower internal validity&#46; Convergent validity was also satisfactory&#44; as scores were found to correlate highly with scores on the Dermatology Life Quality Index&#44; the Short Form-12&#44; the ItchyQoL questionnaire&#44; and the EuroQoL-visual analog scales&#44; among others&#46; The authors who developed the MC-QoL questionnaire also reported that the correlations were strong between the different domain scores and the specific questionnaires used for comparison&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> Multiple regression analysis showed that disease duration was a significant factor in loss of QoL&#44; whereas age&#44; sex and skin involvement were not&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">Soon after the development of the MC-QoL&#44; a group in the Netherlands developed two specific questionnaires &#8212; the Mastocytosis Quality-of-Life Questionnaire &#40;MQLQ&#41; and the Mastocytosis Symptom Assessment Form &#40;MSAF&#41; &#8212; for use in patients with indolent systemic mastocytosis&#46;<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">23</span></a> Results of administering the MSAF showed that fatigue and sleep difficulties were the most severe symptoms&#46; MQLQ results showed that fear of anaphylaxis had the greatest impact on QoL&#46; These 2&#8239;questionnaires have since been used in several published studies on the psychosocial impact of mastocytosis&#46; The results are consistent with previous reports in the literature&#46; A recent review of patients&#8217; perceptions of changes related to mastocytosis<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">24</span></a> found that they reported a moderate to severe decrease in QoL&#44; a negative impact on affect in daily life&#44; and a psychological impact in over 60&#37; to 70&#37; of cases&#46;<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">12&#44;23&#8211;26</span></a> Among the feelings most often mentioned were sadness&#44; worry&#44; frustration&#44; embarrassment caused by visible skin lesions&#44; fear for the future&#44; and a feeling of being a burden to others&#46;<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">24</span></a> Another study of 7 patients with indolent systemic mastocytosis was recently published by a group in Denmark&#46;<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">27</span></a> Based on data from semistructured interviews with those patients&#44; the authors reported a strong impact of the disease on the patients&#8217; daily lives&#44; particularly in social relationships&#44; self-image&#44; and sexuality&#46; Symptoms restricted and complicated their participation in various activities&#44; and they felt constant fear of an anaphylactic reaction&#46;</p><p id="par0105" class="elsevierStylePara elsevierViewall">Our transcultural adaptation of the MC-QoL facilitates the clinical use of this questionnaire with Spanish-speaking patients in Spain&#46; We used a rigorous&#44; systematic method that ensures the Spanish version of the questionnaire is equivalent to the original&#46; This method has been used repeatedly in Europe to prepare measurement tools for clinical and research applications&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#8211;19</span></a> We suggest that research to further validate the MC-QoL in use should be undertaken in the future in the interest of confirming its sensitivity&#44; specificity&#44; validity and reliability in patients in various clinical settings&#46; Such research would require coordinated multicenter studies with a common aim&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Conclusion</span><p id="par0110" class="elsevierStylePara elsevierViewall">We now have a culturally adapted peninsular Spanish version of the MC-QoL to use in clinical practice and research to measure the impact of mastocytosis on QoL&#46; This tool can help us gain deeper understanding of the needs&#44; experiences&#44; and fears of patients with mastocytosis and facilitate more comprehensive management of the condition&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Conflicts of interest</span><p id="par0115" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interest&#46;</p></span></span>"
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        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Background</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">Mastocytosis encompasses a spectrum of disorders in which different organs and tissues are affected by the clonal expansion of mast cells&#46; The skin is one of the most frequently affected organs&#46; The clinical manifestations of mastocytosis are linked to the release of proinflammatory mediators&#44; and the impact of this disorder on patient quality of life has been described in various studies&#46; The Mastocytosis Quality of Life Questionnaire &#40;MC-QoL&#41;&#44; which was recently developed in Germany and now also exists in English&#44; is an important tool for evaluating the psychosocial impact of this disease&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Objective</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">To create a Spanish version of the MC-QoL that was culturally equivalent to the original German questionnaire&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Material and methods</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">The adaptation process&#44; which involved forward translation&#44; cognitive interviews&#44; and back translation&#44; was conducted in accordance with the principles of good practice for the translation and cultural adaptation of patient-reported measures of the International Society for Pharmacoeconomics and Outcomes Research&#46; The MC-QoL contains 27 items in 4 domains&#58; symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Results</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">The first version of the Spanish questionnaire&#44; obtained by direct translation from German&#44; was tested in cognitive interviews&#44; after which 3 items were modified to make them easier to understand&#46; The German back translation of the Spanish questionnaire was analyzed by the authors of the original MC-QoL&#44; who modified 1 item they considered to have lost specificity in the adaptation process&#46; The definitive Spanish MC-QoL was then produced following minor modifications agreed on with the German authors&#46;</p></span> <span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Conclusions</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">We have produced a cultural adaptation of the MC-QoL in Spanish that can be used in routine clinical practice to obtain a more complete picture of the impact of mastocytosis on patient quality of life&#46;</p></span>"
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        "resumen" => "<span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Introducci&#243;n</span><p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Las mastocitosis son un grupo de proliferaciones clonales de mastocitos que pueden afectar a distintos &#243;rganos y tejidos&#44; siendo la piel uno de los implicados con mayor frecuencia&#46; La cl&#237;nica est&#225; relacionada con la liberaci&#243;n de mediadores proinflamatorios&#46; Diversos estudios han se&#241;alado la afectaci&#243;n en la calidad de vida de estos pacientes&#46; El reciente desarrollo en Alemania de un cuestionario espec&#237;fico sobre calidad de vida en pacientes con mastocitosis &#40;Mastocytosis Quality of Life questionnaire &#91;MC-QoL&#93;&#41;&#44; con una versi&#243;n en ingl&#233;s&#44; supone un paso significativo en la valoraci&#243;n del impacto psicosocial&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Objetivo</span><p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Realizar la adaptaci&#243;n transcultural al castellano del MC-QoL&#44; garantizando su equivalencia con la versi&#243;n original&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Material y m&#233;todos</span><p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Metodolog&#237;a de traducci&#243;n directa&#44; entrevistas cognitivas y traducci&#243;n inversa&#44; siguiendo los principios de buena pr&#225;ctica de la International Society for Pharmacoeconomics and Outcomes Research&#46; El MC-QoL incluye 27 preguntas estructuradas en 4 dominios&#58; s&#237;ntomas&#44; emociones&#44; funcionamiento&#47;vida social y sintomatolog&#237;a cut&#225;nea&#46;</p></span> <span id="abst0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Resultados</span><p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">La primera versi&#243;n del cuestionario en espa&#241;ol&#44; obtenida por traducci&#243;n directa de la versi&#243;n en alem&#225;n&#44; se someti&#243; a entrevistas cognitivas&#44; modific&#225;ndose 3 preguntas para hacerlas m&#225;s comprensibles&#46; Posteriormente&#44; los autores originales modificaron una pregunta de la versi&#243;n obtenida por retrotraducci&#243;n al considerar que hab&#237;a perdido especificidad&#46; Tras m&#237;nimas modificaciones en consenso con los autores originales&#44; se obtuvo la versi&#243;n definitiva en castellano&#46;</p></span> <span id="abst0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Conclusi&#243;n</span><p id="spar0065" class="elsevierStyleSimplePara elsevierViewall">Se obtiene la adaptaci&#243;n transcultural en castellano de un cuestionario de calidad de vida espec&#237;fico para pacientes con mastocitosis&#44; que podr&#225; ser utilizado en la pr&#225;ctica cl&#237;nica para una valoraci&#243;n m&#225;s completa de este grupo de pacientes&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Bertol&#237;n-Colilla M&#44; Garin-Boronat O&#44; Siebenhaar F&#44; Maurer M&#44; Pujol RM&#44; Gim&#233;nez-Arnau AM&#46; Adaptaci&#243;n transcultural del cuestionario Mastocytosis Quality of Life questionnaire &#40;MC-QoL&#41; del alem&#225;n al castellano&#46; Actas Dermosifiliogr&#46; 2020&#59;111&#58;243&#8211;248&#46;</p>"
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          "en" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Changes made in questions 13 and 25 of the Mastocytosis Quality of Life &#40;MC-QoL&#41; questionnaire&#46; &#40;Translator&#8217;s note&#58; The translations in this figure adhere as closely as possible to the Spanish phrasing so that the English-language reader of this article can intuit the reasons why the Spanish revisions were necessary&#46; Readers interested in the validated cultural adaptation&#47;translation of the MC-QoL to English must consult the online supplement &#91;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#93; for this article&#41;&#46;</p>"
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          "en" => "<p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">Changes made in question 18 of the Mastocytosis Quality of Life questionnaire &#40;MC-QoL&#41;&#46; &#40;Translator&#8217;s note&#58; The translations in this figure adhere as closely as possible to the Spanish phrasing so that the English-language reader of this article can intuit the reasons why the Spanish revisions were necessary&#46; Readers interested in the validated cultural adaptation&#47;translation of the MC-QoL to English must consult the online supplement &#91;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#93; for this article&#41;&#46;</p>"
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Original Article
Translation and Cultural Adaptation of the German Mastocytosis Quality of Life Questionnaire (MC-QoL) Into Spanish
Adaptación transcultural del cuestionario Mastocytosis Quality of Life questionnaire (MC-QoL) del alemán al castellano
M. Bertolín-Colillaa, O. Garin-Boronatb, F. Siebenhaarc, M. Maurerc, R.M. Pujola, A.M. Giménez-Arnaua,
Corresponding author
a Departamento de Dermatología, Hospital del Mar, Parc de Salut Mar, IMIM, Universitat Autònoma de Barcelona, Spain
b Grupo de Investigación en Servicios Sanitarios, Instituto Hospital del Mar de Investigaciones Médicas, Spain
c Departamento de Dermatología y Alergia, Allergie-Centrum-Charité, Charité-Universitätsmedizin, Berlín, Germany
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erythema&#44; palpitations&#44; headache&#44; abdominal pain&#44; diarrhea&#44; hypotension&#44; irritability&#44; and anaphylaxis among others&#41; are related to the release of proinflammatory mediators that infiltrate organs and tissues&#59; other associated hematologic conditions may also be present&#46;<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3&#44;5&#8211;10</span></a> Skin involvement is the most common sign &#8212; present in all pediatric cases and 80&#37; of adult cases &#8212; and often provides the key to diagnosing the disease&#46;<a class="elsevierStyleCrossRefs" href="#bib0015"><span class="elsevierStyleSup">3&#44;9&#44;11</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Although clinical signs are heterogeneous and variable&#44; the condition develops slowly in most patients&#46; Nonetheless&#44; several studies have reported a significant impact on patients&#8217; quality of life &#40;QoL&#41;&#44;<a class="elsevierStyleCrossRef" href="#bib0060"><span class="elsevierStyleSup">12</span></a> as a consequence of both the symptoms themselves and the need for continuous treatments to alleviate or prevent them&#46;<a class="elsevierStyleCrossRef" href="#bib0065"><span class="elsevierStyleSup">13</span></a> QoL improvement is a main objective in managing mastocytosis&#44; and results obtained with health related QoL questionnaires have become increasingly important in both routine clinical practice and the conduct of clinical trials&#46; Such questionnaires provide information from the patient&#8217;s perspective and prevent loss of useful information noted during the clinical evaluation of individuals&#46;<a class="elsevierStyleCrossRef" href="#bib0070"><span class="elsevierStyleSup">14</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">Health related QoL tools for specific diseases or symptoms provide more solid evidence than generic questionnaires&#46; A specific tool for mastocytosis was unavailable&#44; however&#44; until the German group of Siebenhaar et al<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> developed and validated the Mastocytosis QoL &#40;MC-QoL&#41; questionnaire for adults with skin manifestations of indolent systemic mastocytosis&#46; &#40;See online supplementary material&#44; Appendix&#44; Fig&#46; 1&#44; the German Version&#44; and Fig&#46; 2&#44; the American English version&#46;&#41; The MC-QoL is a significant step forward in the evaluation of the psychological and social impact of this disease&#46;</p><p id="par0025" class="elsevierStylePara elsevierViewall">Our aim was to translate and culturally adapt the MC-QoL to peninsular Spanish&#44; preserving its equivalence to the original version&#44; so that it could be used in routine clinical practice in Spain&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Material and Methods</span><p id="par0030" class="elsevierStylePara elsevierViewall">The MC-QoL is composed of 27 questions in 4 domains&#58; general symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin symptoms&#46; Each question has 5 possible answers&#46;</p><p id="par0035" class="elsevierStylePara elsevierViewall">We followed published guidelines when planning the translation and adaptation process&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#8211;20</span></a> Particularly important were the principles of good practice by the International Society for Pharmacoeconomics and Outcomes Research &#40;ISPOR&#41;&#46;<a class="elsevierStyleCrossRef" href="#bib0085"><span class="elsevierStyleSup">17</span></a></p><p id="par0040" class="elsevierStylePara elsevierViewall">The method involved translation and back translation in the following stages&#58; translation of the original German questionnaire to Spanish by a bilingual translator &#40;native language&#44; peninsular Spanish&#41;&#44; patient interviews for cognitive debriefing&#44; and finally back translation of the Spanish version to German by another bilingual translator &#40;native language&#44; German&#41; for review by the authors of the original German questionnaire &#40;<a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#41;&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><p id="par0045" class="elsevierStylePara elsevierViewall">The working group was made up of 2 Spanish dermatologists&#44; a German dermatologist expert in mastocytosis&#44; 2 professional bilingual translators&#44; and an expert in the validation of questionnaires&#46;</p><p id="par0050" class="elsevierStylePara elsevierViewall">Interviews for cognitive debriefing were conducted with patients in order to ensure their correct understanding of concepts in the questionnaire&#46; All 6 patients interviewed were being treated for mastocytosis in our hospital&#46; They had different sociodemographic profiles and were diagnosed with either indolent systemic or cutaneous mastocytosis&#46; All diagnoses were confirmed by bone marrow or skin biopsy&#46; Three were men and 3 were women&#46; Their mean age was 45&#46;7 years &#40;median&#44; 49 years&#41;&#46; Two had cutaneous mastocytosis and 4 had the indolent systemic form&#46;</p><p id="par0055" class="elsevierStylePara elsevierViewall">The principal investigator explained the type of study and its objectives in detail to all 6 patients and described the questionnaire&#46; The patients gave their written informed consent to participation&#46; Verbal probing was used during the cognitive debriefing sessions&#44;<a class="elsevierStyleCrossRefs" href="#bib0095"><span class="elsevierStyleSup">19&#8211;22</span></a> and the patients followed a structured protocol&#44; as follows&#58; they read all sections of the questionnaire aloud&#44; starting with the instructions and each question one by one&#44; answering them as they went along&#46; During this process&#44; the patients were asked to explain in their own words what they had just read and to point out parts of the text that seemed confusing or difficult to interpret&#46; The participants&#8217; expressions&#44; comments&#44; and even their gestures were noted in case they might indicate where the questionnaire was difficult to understand&#46; They were also asked whether they might have expressed something differently or if they could have understood something better if different phrasing had been used&#46; Their answers were carefully and literally noted so that the working group could evaluate them afterwards&#46; Interviews lasted about 20 to 30&#8239;minutes&#46;</p><p id="par0060" class="elsevierStylePara elsevierViewall">After review and protocolized discussion of the results&#44; the working group produced a second draft of the questionnaire for professional back translation to German and review by the original authors&#46; A third Spanish version was created based on the original authors&#8217; comments and suggestions and once again back translated to German for another evaluation&#46; One question required further revision and a few small changes were made to produce the fourth and final version of the adapted Spanish MC-QoL&#46; &#40;See online supplementary material&#44; Appendix&#44; Fig&#46; 3&#44; the final Spanish version&#46;&#41;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Results</span><p id="par0065" class="elsevierStylePara elsevierViewall">Several revisions were made as a result of the cognitive interviews&#44; during which the patients revealed their comprehension difficulties and the interviewer recorded their suggestions&#46;</p><p id="par0070" class="elsevierStylePara elsevierViewall">First&#44; small changes were made in 2 sentences in the general instructions&#46;<a class="elsevierStyleCrossRef" href="#fn0005">&#42;</a> &#40;See online supplementary material&#44; Appendix B&#44; Figs&#46; 1&#44; German&#44; and 2&#44; English&#46;&#41; Several words were changed in the drafted sentence saying&#44; &#8220;Please read each question with attention and select from among the 5 options the one that is most appropriate for you&#46;&#8221; The Spanish draft was changed in the final version to&#44; &#8220;Please read each question <span class="elsevierStyleItalic">carefully</span> &#40;in Spanish&#44; the word was <span class="elsevierStyleItalic">detenidamente</span>&#44; implying attending to detail&#44; not rushing&#41; and select from among 5 options <span class="elsevierStyleItalic">the one that best corresponds to your situation</span>&#46;&#8221; The words or phrases shown in italics mark the points of revision&#46; These changes were made because the literal translation from German to Spanish placed emphasis on elements that did not help the reader&#46; Also changed&#44; in the interest of easier comprehension&#44; was the first-version sentence&#44; &#8220;Don&#8217;t think too much &#40;in Spanish&#44; <span class="elsevierStyleItalic">demasiado</span>&#41; about your answer and don&#8217;t forget to answer all the questions&#46;&#8221; The revised version was &#8220;<span class="elsevierStyleItalic">Please</span> don&#8217;t think <span class="elsevierStyleItalic">much</span> about your answer and <span class="elsevierStyleItalic">make sure you answer</span> all the questions&#46;&#8221;</p><p id="par0075" class="elsevierStylePara elsevierViewall">Minimal changes were also made in the 5 possible answers for some of the questions &#40;eg&#44; from <span class="elsevierStyleItalic">un poco</span> &#91;&#8220;a little&#8221;&#93; to <span class="elsevierStyleItalic">poco</span> &#91;&#8220;little&#8221;&#93; and from much&#237;simo &#91;&#8220;a great deal&#8221; or &#8220;very much&#8221;&#93; to <span class="elsevierStyleItalic">extremadamente</span> &#91;&#8220;extremely&#8221;&#93; given that these modifications made more sense in relation to the Spanish wording of the questions&#46;</p><p id="par0080" class="elsevierStylePara elsevierViewall">Three of the 27 questions &#40;numbers 13&#44; 18&#44; and 25&#41; were revised&#46; Question 13 required the addition of some examples to enable better patient understanding&#44; as it seemed vague without them &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; Question 25&#44; which asked whether the patient <span class="elsevierStyleItalic">se sinti&#243; solo&#47;a</span> &#40;&#8220;felt lonely&#8221;&#41; was not entirely clear to some patients&#44; so a Spanish paraphrase of the concept&#44; <span class="elsevierStyleItalic">o sin apoyo</span> &#40;&#8220;or without support&#8221;&#41;&#44; was added to make the concept more concrete and easier to grasp &#40;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#41;&#46; Finally&#44; question 18 was the most problematic&#44; and the only one that was revised by the original version&#8217;s authors after back translation&#46; The phrase <span class="elsevierStyleItalic">ha notado la carga de los s&#237;ntomas</span> &#40;&#8220;have noticed the burden of the symptoms&#8221;&#41; was changed because it had been translated too literally and the Spanish word <span class="elsevierStyleItalic">carga</span> &#40;&#8220;burden&#8221;&#41; did not seem to be semantically equivalent to its corresponding words in German or English&#44; creating a comprehension problem for patients&#46; A small change &#8212; the addition of <span class="elsevierStyleItalic">o el peso</span> &#40;&#8220;or the weight&#8221;&#41; &#8212; failed to reflect the main purpose of the question&#44; leaving it difficult to understand correctly&#46; Therefore&#44; in collaboration with the authors of the original German questionnaire&#44; an attempt was made to explain the concept &#8212; as feeling <span class="elsevierStyleItalic">agobiado o sobrecargado</span> &#40;&#8220;overwhelmed or overburdened&#8221;&#41; in Spanish &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41; rather than just look for target-language synonyms to translate the concept of &#8220;burden&#8221; by itself&#46; However&#44; the authors of the original still felt the specificity of the original German phrase&#44; which refers to emotional burden&#44; had been lost&#46; Finally&#44; consensus was reached among all parties involved&#44; and a minimal change was made&#44; with the addition of the word <span class="elsevierStyleItalic">emocionalmente</span> &#40;&#8220;emotionally&#8221;&#41; to the Spanish question &#40;<a class="elsevierStyleCrossRef" href="#fig0015">Fig&#46; 3</a>&#41;&#46; Thus&#44; agreement on the final version of the questionnaire in Spanish was reached&#46; &#40;See online supplementary material&#44; Appendix B&#44; Fig&#46; 3&#44; the final Spanish version&#46;&#41; The format of the questionnaire did not have to be modified&#44; as it seemed simple and intuitive to all the patients interviewed&#46;</p><elsevierMultimedia ident="fig0010"></elsevierMultimedia><elsevierMultimedia ident="fig0015"></elsevierMultimedia></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Discussion</span><p id="par0085" class="elsevierStylePara elsevierViewall">A wide range of tools are currently available for evaluating and quantifying the impact of different diseases on QoL&#44; and dermatology makes use of both general and disease-specific ones&#46; Even though the literature on mastocytosis shows that a large number of patients with this disease find that their daily life is affected by symptoms&#44;<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">12&#44;15</span></a> before the MC-QoL was developed no specific tool was available&#46; This questionnaire therefore represents a significant step forward in the clinical evaluation of patients with mastocytosis&#46;</p><p id="par0090" class="elsevierStylePara elsevierViewall">The MC-QoL was developed and validated in Germany&#44; in patients diagnosed with cutaneous or indolent systemic mastocytosis&#46; The American English translation was validated and published at the same time&#46; The MC-QoL is a simple 27-item questionnaire that can be administered quickly&#46; Each item is answered by choosing from among 5 options&#44; each of which counts from 0 to 4 points toward a score&#46; The tool has 4 domains related to different aspects of the disease and patients&#8217; daily life&#58; general symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin symptoms&#46; Domain and total scores are calculated by adding up points for individual answers and then expressing the result on a scale from 0 to 100&#44; where higher scores indicate better QoL&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a></p><p id="par0095" class="elsevierStylePara elsevierViewall">The validity and reliability of the new tool&#44; in terms of both total and domain scores&#44; were high&#46; Nearly all domain scores had high internal validity statistics&#46; The exception was skin symptoms&#44; which had slightly lower internal validity&#46; Convergent validity was also satisfactory&#44; as scores were found to correlate highly with scores on the Dermatology Life Quality Index&#44; the Short Form-12&#44; the ItchyQoL questionnaire&#44; and the EuroQoL-visual analog scales&#44; among others&#46; The authors who developed the MC-QoL questionnaire also reported that the correlations were strong between the different domain scores and the specific questionnaires used for comparison&#46;<a class="elsevierStyleCrossRef" href="#bib0075"><span class="elsevierStyleSup">15</span></a> Multiple regression analysis showed that disease duration was a significant factor in loss of QoL&#44; whereas age&#44; sex and skin involvement were not&#46;</p><p id="par0100" class="elsevierStylePara elsevierViewall">Soon after the development of the MC-QoL&#44; a group in the Netherlands developed two specific questionnaires &#8212; the Mastocytosis Quality-of-Life Questionnaire &#40;MQLQ&#41; and the Mastocytosis Symptom Assessment Form &#40;MSAF&#41; &#8212; for use in patients with indolent systemic mastocytosis&#46;<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">23</span></a> Results of administering the MSAF showed that fatigue and sleep difficulties were the most severe symptoms&#46; MQLQ results showed that fear of anaphylaxis had the greatest impact on QoL&#46; These 2&#8239;questionnaires have since been used in several published studies on the psychosocial impact of mastocytosis&#46; The results are consistent with previous reports in the literature&#46; A recent review of patients&#8217; perceptions of changes related to mastocytosis<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">24</span></a> found that they reported a moderate to severe decrease in QoL&#44; a negative impact on affect in daily life&#44; and a psychological impact in over 60&#37; to 70&#37; of cases&#46;<a class="elsevierStyleCrossRefs" href="#bib0060"><span class="elsevierStyleSup">12&#44;23&#8211;26</span></a> Among the feelings most often mentioned were sadness&#44; worry&#44; frustration&#44; embarrassment caused by visible skin lesions&#44; fear for the future&#44; and a feeling of being a burden to others&#46;<a class="elsevierStyleCrossRef" href="#bib0120"><span class="elsevierStyleSup">24</span></a> Another study of 7 patients with indolent systemic mastocytosis was recently published by a group in Denmark&#46;<a class="elsevierStyleCrossRef" href="#bib0135"><span class="elsevierStyleSup">27</span></a> Based on data from semistructured interviews with those patients&#44; the authors reported a strong impact of the disease on the patients&#8217; daily lives&#44; particularly in social relationships&#44; self-image&#44; and sexuality&#46; Symptoms restricted and complicated their participation in various activities&#44; and they felt constant fear of an anaphylactic reaction&#46;</p><p id="par0105" class="elsevierStylePara elsevierViewall">Our transcultural adaptation of the MC-QoL facilitates the clinical use of this questionnaire with Spanish-speaking patients in Spain&#46; We used a rigorous&#44; systematic method that ensures the Spanish version of the questionnaire is equivalent to the original&#46; This method has been used repeatedly in Europe to prepare measurement tools for clinical and research applications&#46;<a class="elsevierStyleCrossRefs" href="#bib0080"><span class="elsevierStyleSup">16&#8211;19</span></a> We suggest that research to further validate the MC-QoL in use should be undertaken in the future in the interest of confirming its sensitivity&#44; specificity&#44; validity and reliability in patients in various clinical settings&#46; Such research would require coordinated multicenter studies with a common aim&#46;</p></span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">Conclusion</span><p id="par0110" class="elsevierStylePara elsevierViewall">We now have a culturally adapted peninsular Spanish version of the MC-QoL to use in clinical practice and research to measure the impact of mastocytosis on QoL&#46; This tool can help us gain deeper understanding of the needs&#44; experiences&#44; and fears of patients with mastocytosis and facilitate more comprehensive management of the condition&#46;</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Conflicts of interest</span><p id="par0115" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interest&#46;</p></span></span>"
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        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Background</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">Mastocytosis encompasses a spectrum of disorders in which different organs and tissues are affected by the clonal expansion of mast cells&#46; The skin is one of the most frequently affected organs&#46; The clinical manifestations of mastocytosis are linked to the release of proinflammatory mediators&#44; and the impact of this disorder on patient quality of life has been described in various studies&#46; The Mastocytosis Quality of Life Questionnaire &#40;MC-QoL&#41;&#44; which was recently developed in Germany and now also exists in English&#44; is an important tool for evaluating the psychosocial impact of this disease&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Objective</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">To create a Spanish version of the MC-QoL that was culturally equivalent to the original German questionnaire&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Material and methods</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">The adaptation process&#44; which involved forward translation&#44; cognitive interviews&#44; and back translation&#44; was conducted in accordance with the principles of good practice for the translation and cultural adaptation of patient-reported measures of the International Society for Pharmacoeconomics and Outcomes Research&#46; The MC-QoL contains 27 items in 4 domains&#58; symptoms&#44; emotions&#44; social life&#47;functioning&#44; and skin&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Results</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">The first version of the Spanish questionnaire&#44; obtained by direct translation from German&#44; was tested in cognitive interviews&#44; after which 3 items were modified to make them easier to understand&#46; The German back translation of the Spanish questionnaire was analyzed by the authors of the original MC-QoL&#44; who modified 1 item they considered to have lost specificity in the adaptation process&#46; The definitive Spanish MC-QoL was then produced following minor modifications agreed on with the German authors&#46;</p></span> <span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Conclusions</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">We have produced a cultural adaptation of the MC-QoL in Spanish that can be used in routine clinical practice to obtain a more complete picture of the impact of mastocytosis on patient quality of life&#46;</p></span>"
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        "resumen" => "<span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Introducci&#243;n</span><p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Las mastocitosis son un grupo de proliferaciones clonales de mastocitos que pueden afectar a distintos &#243;rganos y tejidos&#44; siendo la piel uno de los implicados con mayor frecuencia&#46; La cl&#237;nica est&#225; relacionada con la liberaci&#243;n de mediadores proinflamatorios&#46; Diversos estudios han se&#241;alado la afectaci&#243;n en la calidad de vida de estos pacientes&#46; El reciente desarrollo en Alemania de un cuestionario espec&#237;fico sobre calidad de vida en pacientes con mastocitosis &#40;Mastocytosis Quality of Life questionnaire &#91;MC-QoL&#93;&#41;&#44; con una versi&#243;n en ingl&#233;s&#44; supone un paso significativo en la valoraci&#243;n del impacto psicosocial&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Objetivo</span><p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Realizar la adaptaci&#243;n transcultural al castellano del MC-QoL&#44; garantizando su equivalencia con la versi&#243;n original&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Material y m&#233;todos</span><p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Metodolog&#237;a de traducci&#243;n directa&#44; entrevistas cognitivas y traducci&#243;n inversa&#44; siguiendo los principios de buena pr&#225;ctica de la International Society for Pharmacoeconomics and Outcomes Research&#46; El MC-QoL incluye 27 preguntas estructuradas en 4 dominios&#58; s&#237;ntomas&#44; emociones&#44; funcionamiento&#47;vida social y sintomatolog&#237;a cut&#225;nea&#46;</p></span> <span id="abst0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Resultados</span><p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">La primera versi&#243;n del cuestionario en espa&#241;ol&#44; obtenida por traducci&#243;n directa de la versi&#243;n en alem&#225;n&#44; se someti&#243; a entrevistas cognitivas&#44; modific&#225;ndose 3 preguntas para hacerlas m&#225;s comprensibles&#46; Posteriormente&#44; los autores originales modificaron una pregunta de la versi&#243;n obtenida por retrotraducci&#243;n al considerar que hab&#237;a perdido especificidad&#46; Tras m&#237;nimas modificaciones en consenso con los autores originales&#44; se obtuvo la versi&#243;n definitiva en castellano&#46;</p></span> <span id="abst0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Conclusi&#243;n</span><p id="spar0065" class="elsevierStyleSimplePara elsevierViewall">Se obtiene la adaptaci&#243;n transcultural en castellano de un cuestionario de calidad de vida espec&#237;fico para pacientes con mastocitosis&#44; que podr&#225; ser utilizado en la pr&#225;ctica cl&#237;nica para una valoraci&#243;n m&#225;s completa de este grupo de pacientes&#46;</p></span>"
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        "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Please cite this article as&#58; Bertol&#237;n-Colilla M&#44; Garin-Boronat O&#44; Siebenhaar F&#44; Maurer M&#44; Pujol RM&#44; Gim&#233;nez-Arnau AM&#46; Adaptaci&#243;n transcultural del cuestionario Mastocytosis Quality of Life questionnaire &#40;MC-QoL&#41; del alem&#225;n al castellano&#46; Actas Dermosifiliogr&#46; 2020&#59;111&#58;243&#8211;248&#46;</p>"
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          "en" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Changes made in questions 13 and 25 of the Mastocytosis Quality of Life &#40;MC-QoL&#41; questionnaire&#46; &#40;Translator&#8217;s note&#58; The translations in this figure adhere as closely as possible to the Spanish phrasing so that the English-language reader of this article can intuit the reasons why the Spanish revisions were necessary&#46; Readers interested in the validated cultural adaptation&#47;translation of the MC-QoL to English must consult the online supplement &#91;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#93; for this article&#41;&#46;</p>"
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          "en" => "<p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">Changes made in question 18 of the Mastocytosis Quality of Life questionnaire &#40;MC-QoL&#41;&#46; &#40;Translator&#8217;s note&#58; The translations in this figure adhere as closely as possible to the Spanish phrasing so that the English-language reader of this article can intuit the reasons why the Spanish revisions were necessary&#46; Readers interested in the validated cultural adaptation&#47;translation of the MC-QoL to English must consult the online supplement &#91;<a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a>&#93; for this article&#41;&#46;</p>"
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ISSN: 15782190
Original language: English
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¿Es usted profesional sanitario apto para prescribir o dispensar medicamentos?

Are you a health professional able to prescribe or dispense drugs?