Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).
Identifieur interne : 000116 ( Main/Exploration ); précédent : 000115; suivant : 000117Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).
Auteurs : Marion Rapp [Allemagne] ; Lise Duranteau [France] ; Tim C. Van De Grift [Pays-Bas] ; Justine Schober [États-Unis] ; Angelica L. Hirschberg [Suède] ; Susanne Krege [Allemagne] ; Anna Nordenstrom [Suède] ; Robert Roehle [Allemagne] ; Ute Thyen [Allemagne] ; Claire Bouvattier [France] ; Baudewijntje P C. Kreukels [Pays-Bas] ; Agneta Nordenskjold [Suède]Source :
- Journal of pediatric urology [ 1873-4898 ] ; 2020.
Abstract
BACKGROUND
Surgery is performed in many individuals with disorders/differences of sex development (DSD). Irreversibility of some surgical procedures, lack of information about the procedures, and lack of follow-up care for physical and psychological outcomes, lead to wish for more knowledge from both surgeons and patients. After the consensus conference in 2006, multidisciplinary care is provided to a higher degree with psychological support and more restricted surgical procedures. Outcome studies after genital surgery often lack of patient's perspective.
OBJECTIVE
To describe surgical procedures in relation to diagnosis, to evaluate the outcomes of surgery through genital examination, and through patient's and observer's satisfaction with the anatomical and functional result after genital surgery.
STUDY DESIGN
In a cross-sectional clinical study performed in six European countries in 2014/15, we have included 500 participants where surgery was performed, from a total of 1040 adolescents (≥16years) and adults with a DSD. Diagnoses included Turner syndrome (n = 301), mixed gonadal dysgenesis (45,XO/46,XY; n = 45), Klinefelter syndrome (n = 218), XYY (n = 1), 46, XY DSD (n = 222) and 46, XX DSD (n = 253). Study protocol included clinical report files, an optional gynecological or urological examination, patient reported outcomes including received surgical interventions, satisfaction with appearance and function after surgery, and impact of the surgical procedure on life.
RESULTS
Five hundred participants had received genital or breast surgery, with the highest rate in 46, XY DSD and the lowest in Turner syndrome. Altogether; 240 participants had feminizing surgery, 112 had masculinizing surgery, and 217 underwent gonadectomy. Physicians evaluated anatomical appearance at genital examination as poor in less than 10%. Dissatisfaction with anatomical appearance was reported by 22% of the participants, dissatisfaction with function by 20%. Being (very) dissatisfied with anatomical appearance and function was reported by 13% of the study participants. Most participants reported no impact, or positive impact, of the surgical procedures on their lives, but 29% experienced a negative effect of gonadectomy on their life.
DISCUSSION
There might be a selection bias and/or a recall bias for participating in our studies. Due to poor data quality about surgical procedures performed in the past, we also relied on participants memory about surgical procedures in their past. Ideally, patient reported outcomes should be evaluated both before and after surgical procedures.
CONCLUSION
A vast majority are satisfied with appearance and function, but still genital or breast surgery have a long-lasting effect on patient's life. Self-reported satisfaction is usually lower than the observer's evaluation regarding both appearance and function.
DOI: 10.1016/j.jpurol.2020.12.007
PubMed: 33358555
Affiliations:
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Electronic address: marion.rapp@gmx.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538</wicri:regionArea><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion></affiliation></author><author><name sortKey="Duranteau, Lise" sort="Duranteau, Lise" uniqKey="Duranteau L" first="Lise" last="Duranteau">Lise Duranteau</name><affiliation wicri:level="3"><nlm:affiliation>Adolescent and Young Adult Gynecology Unit, Centre de Reference des Maladies Rares du Développement Génital, Hôpital Bicêtre, AP.HP Paris Saclay University, 78 rue du General Leclerc, Le Kremlin Bicêtre, 94270, France. Electronic address: lise.duranteau@aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Adolescent and Young Adult Gynecology Unit, Centre de Reference des Maladies Rares du Développement Génital, Hôpital Bicêtre, AP.HP Paris Saclay University, 78 rue du General Leclerc, Le Kremlin Bicêtre, 94270</wicri:regionArea><placeName><region type="region" nuts="2">Île-de-France</region></placeName></affiliation></author><author><name sortKey="Van De Grift, Tim C" sort="Van De Grift, Tim C" uniqKey="Van De Grift T" first="Tim C" last="Van De Grift">Tim C. Van De Grift</name><affiliation wicri:level="1"><nlm:affiliation>Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam. 1007, the Netherlands; Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: t.vandegrift@amsterdamumc.nl.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam. 1007, the Netherlands; Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007</wicri:regionArea><wicri:noRegion>1007</wicri:noRegion></affiliation></author><author><name sortKey="Schober, Justine" sort="Schober, Justine" uniqKey="Schober J" first="Justine" last="Schober">Justine Schober</name><affiliation wicri:level="1"><nlm:affiliation>UPMC Hamot, Department of Urology, 201 State St. Erie, PA, 16550, USA. Electronic address: schobermd@aol.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>UPMC Hamot, Department of Urology, 201 State St. Erie, PA, 16550</wicri:regionArea><wicri:noRegion>16550</wicri:noRegion></affiliation></author><author><name sortKey="Hirschberg, Angelica L" sort="Hirschberg, Angelica L" uniqKey="Hirschberg A" first="Angelica L" last="Hirschberg">Angelica L. Hirschberg</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, Karolinska Institutet, Department of Gynaecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: Angelica.Hirschberg.Linden@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health, Karolinska Institutet, Department of Gynaecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, 171 76</wicri:regionArea><wicri:noRegion>171 76</wicri:noRegion></affiliation></author><author><name sortKey="Krege, Susanne" sort="Krege, Susanne" uniqKey="Krege S" first="Susanne" last="Krege">Susanne Krege</name><affiliation wicri:level="1"><nlm:affiliation>Kliniken Essen-Mitte, Klinik fur Urologie, Kinderurologie und urologische Onkologie, Evangelische Huyssens Stiftung/Knappschaft GmbH, Essen, 45136, Germany. Electronic address: S.Krege@kem-med.com.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Kliniken Essen-Mitte, Klinik fur Urologie, Kinderurologie und urologische Onkologie, Evangelische Huyssens Stiftung/Knappschaft GmbH, Essen, 45136</wicri:regionArea><wicri:noRegion>45136</wicri:noRegion><wicri:noRegion>45136</wicri:noRegion><wicri:noRegion>45136</wicri:noRegion></affiliation></author><author><name sortKey="Nordenstrom, Anna" sort="Nordenstrom, Anna" uniqKey="Nordenstrom A" first="Anna" last="Nordenstrom">Anna Nordenstrom</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: anna.nordenstrom@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, 171 76</wicri:regionArea><wicri:noRegion>171 76</wicri:noRegion></affiliation></author><author><name sortKey="Roehle, Robert" sort="Roehle, Robert" uniqKey="Roehle R" first="Robert" last="Roehle">Robert Roehle</name><affiliation wicri:level="3"><nlm:affiliation>Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Berlin, 13353, Germany. Electronic address: robert.roehle@charite.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Berlin, 13353</wicri:regionArea><placeName><region type="land" nuts="3">Berlin</region><settlement type="city">Berlin</settlement></placeName></affiliation></author><author><name sortKey="Thyen, Ute" sort="Thyen, Ute" uniqKey="Thyen U" first="Ute" last="Thyen">Ute Thyen</name><affiliation wicri:level="1"><nlm:affiliation>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538, Germany. Electronic address: ute.thyen@uksh.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538</wicri:regionArea><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion></affiliation></author><author><name sortKey="Bouvattier, Claire" sort="Bouvattier, Claire" uniqKey="Bouvattier C" first="Claire" last="Bouvattier">Claire Bouvattier</name><affiliation wicri:level="3"><nlm:affiliation>Endocrinologie pediatrique, Centre de Reference des Maladies Rares du Développement Génital, Hôpitaux Universitaires Paris Saclay (Bicêtre), 78 rue du General Leclerc, Le Kremlin Bicetre, 94270, France. Electronic address: claire.bouvattier@aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Endocrinologie pediatrique, Centre de Reference des Maladies Rares du Développement Génital, Hôpitaux Universitaires Paris Saclay (Bicêtre), 78 rue du General Leclerc, Le Kremlin Bicetre, 94270</wicri:regionArea><placeName><region type="region" nuts="2">Île-de-France</region></placeName></affiliation></author><author><name sortKey="Kreukels, Baudewijntje P C" sort="Kreukels, Baudewijntje P C" uniqKey="Kreukels B" first="Baudewijntje P C" last="Kreukels">Baudewijntje P C. Kreukels</name><affiliation wicri:level="1"><nlm:affiliation>Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: B.Kreukels@amsterdamumc.nl.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007</wicri:regionArea><wicri:noRegion>1007</wicri:noRegion></affiliation></author><author><name sortKey="Nordenskjold, Agneta" sort="Nordenskjold, Agneta" uniqKey="Nordenskjold A" first="Agneta" last="Nordenskjold">Agneta Nordenskjold</name><affiliation wicri:level="3"><nlm:affiliation>Department of Women's and Children's Health and Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden; Pediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden. Electronic address: Agneta.Nordenskjold@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health and Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden; Pediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm</wicri:regionArea><placeName><settlement type="city">Stockholm</settlement><region nuts="2">Svealand</region></placeName></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2020">2020</date><idno type="RBID">pubmed:33358555</idno><idno type="pmid">33358555</idno><idno type="doi">10.1016/j.jpurol.2020.12.007</idno><idno type="wicri:Area/Main/Corpus">000028</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Corpus" wicri:corpus="PubMed">000028</idno><idno type="wicri:Area/Main/Curation">000028</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Curation">000028</idno><idno type="wicri:Area/Main/Exploration">000028</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).</title><author><name sortKey="Rapp, Marion" sort="Rapp, Marion" uniqKey="Rapp M" first="Marion" last="Rapp">Marion Rapp</name><affiliation wicri:level="1"><nlm:affiliation>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538, Germany. Electronic address: marion.rapp@gmx.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538</wicri:regionArea><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion></affiliation></author><author><name sortKey="Duranteau, Lise" sort="Duranteau, Lise" uniqKey="Duranteau L" first="Lise" last="Duranteau">Lise Duranteau</name><affiliation wicri:level="3"><nlm:affiliation>Adolescent and Young Adult Gynecology Unit, Centre de Reference des Maladies Rares du Développement Génital, Hôpital Bicêtre, AP.HP Paris Saclay University, 78 rue du General Leclerc, Le Kremlin Bicêtre, 94270, France. Electronic address: lise.duranteau@aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Adolescent and Young Adult Gynecology Unit, Centre de Reference des Maladies Rares du Développement Génital, Hôpital Bicêtre, AP.HP Paris Saclay University, 78 rue du General Leclerc, Le Kremlin Bicêtre, 94270</wicri:regionArea><placeName><region type="region" nuts="2">Île-de-France</region></placeName></affiliation></author><author><name sortKey="Van De Grift, Tim C" sort="Van De Grift, Tim C" uniqKey="Van De Grift T" first="Tim C" last="Van De Grift">Tim C. Van De Grift</name><affiliation wicri:level="1"><nlm:affiliation>Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam. 1007, the Netherlands; Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: t.vandegrift@amsterdamumc.nl.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam. 1007, the Netherlands; Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007</wicri:regionArea><wicri:noRegion>1007</wicri:noRegion></affiliation></author><author><name sortKey="Schober, Justine" sort="Schober, Justine" uniqKey="Schober J" first="Justine" last="Schober">Justine Schober</name><affiliation wicri:level="1"><nlm:affiliation>UPMC Hamot, Department of Urology, 201 State St. Erie, PA, 16550, USA. Electronic address: schobermd@aol.com.</nlm:affiliation><country xml:lang="fr">États-Unis</country><wicri:regionArea>UPMC Hamot, Department of Urology, 201 State St. Erie, PA, 16550</wicri:regionArea><wicri:noRegion>16550</wicri:noRegion></affiliation></author><author><name sortKey="Hirschberg, Angelica L" sort="Hirschberg, Angelica L" uniqKey="Hirschberg A" first="Angelica L" last="Hirschberg">Angelica L. Hirschberg</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, Karolinska Institutet, Department of Gynaecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: Angelica.Hirschberg.Linden@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health, Karolinska Institutet, Department of Gynaecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, 171 76</wicri:regionArea><wicri:noRegion>171 76</wicri:noRegion></affiliation></author><author><name sortKey="Krege, Susanne" sort="Krege, Susanne" uniqKey="Krege S" first="Susanne" last="Krege">Susanne Krege</name><affiliation wicri:level="1"><nlm:affiliation>Kliniken Essen-Mitte, Klinik fur Urologie, Kinderurologie und urologische Onkologie, Evangelische Huyssens Stiftung/Knappschaft GmbH, Essen, 45136, Germany. Electronic address: S.Krege@kem-med.com.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Kliniken Essen-Mitte, Klinik fur Urologie, Kinderurologie und urologische Onkologie, Evangelische Huyssens Stiftung/Knappschaft GmbH, Essen, 45136</wicri:regionArea><wicri:noRegion>45136</wicri:noRegion><wicri:noRegion>45136</wicri:noRegion><wicri:noRegion>45136</wicri:noRegion></affiliation></author><author><name sortKey="Nordenstrom, Anna" sort="Nordenstrom, Anna" uniqKey="Nordenstrom A" first="Anna" last="Nordenstrom">Anna Nordenstrom</name><affiliation wicri:level="1"><nlm:affiliation>Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: anna.nordenstrom@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, 171 76</wicri:regionArea><wicri:noRegion>171 76</wicri:noRegion></affiliation></author><author><name sortKey="Roehle, Robert" sort="Roehle, Robert" uniqKey="Roehle R" first="Robert" last="Roehle">Robert Roehle</name><affiliation wicri:level="3"><nlm:affiliation>Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Berlin, 13353, Germany. Electronic address: robert.roehle@charite.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Berlin, 13353</wicri:regionArea><placeName><region type="land" nuts="3">Berlin</region><settlement type="city">Berlin</settlement></placeName></affiliation></author><author><name sortKey="Thyen, Ute" sort="Thyen, Ute" uniqKey="Thyen U" first="Ute" last="Thyen">Ute Thyen</name><affiliation wicri:level="1"><nlm:affiliation>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538, Germany. Electronic address: ute.thyen@uksh.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538</wicri:regionArea><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion><wicri:noRegion>23538</wicri:noRegion></affiliation></author><author><name sortKey="Bouvattier, Claire" sort="Bouvattier, Claire" uniqKey="Bouvattier C" first="Claire" last="Bouvattier">Claire Bouvattier</name><affiliation wicri:level="3"><nlm:affiliation>Endocrinologie pediatrique, Centre de Reference des Maladies Rares du Développement Génital, Hôpitaux Universitaires Paris Saclay (Bicêtre), 78 rue du General Leclerc, Le Kremlin Bicetre, 94270, France. Electronic address: claire.bouvattier@aphp.fr.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Endocrinologie pediatrique, Centre de Reference des Maladies Rares du Développement Génital, Hôpitaux Universitaires Paris Saclay (Bicêtre), 78 rue du General Leclerc, Le Kremlin Bicetre, 94270</wicri:regionArea><placeName><region type="region" nuts="2">Île-de-France</region></placeName></affiliation></author><author><name sortKey="Kreukels, Baudewijntje P C" sort="Kreukels, Baudewijntje P C" uniqKey="Kreukels B" first="Baudewijntje P C" last="Kreukels">Baudewijntje P C. Kreukels</name><affiliation wicri:level="1"><nlm:affiliation>Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: B.Kreukels@amsterdamumc.nl.</nlm:affiliation><country xml:lang="fr" wicri:curation="lc">Pays-Bas</country><wicri:regionArea>Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007</wicri:regionArea><wicri:noRegion>1007</wicri:noRegion></affiliation></author><author><name sortKey="Nordenskjold, Agneta" sort="Nordenskjold, Agneta" uniqKey="Nordenskjold A" first="Agneta" last="Nordenskjold">Agneta Nordenskjold</name><affiliation wicri:level="3"><nlm:affiliation>Department of Women's and Children's Health and Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden; Pediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden. Electronic address: Agneta.Nordenskjold@ki.se.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Women's and Children's Health and Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden; Pediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm</wicri:regionArea><placeName><settlement type="city">Stockholm</settlement><region nuts="2">Svealand</region></placeName></affiliation></author></analytic><series><title level="j">Journal of pediatric urology</title><idno type="eISSN">1873-4898</idno><imprint><date when="2020" type="published">2020</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>Surgery is performed in many individuals with disorders/differences of sex development (DSD). Irreversibility of some surgical procedures, lack of information about the procedures, and lack of follow-up care for physical and psychological outcomes, lead to wish for more knowledge from both surgeons and patients. After the consensus conference in 2006, multidisciplinary care is provided to a higher degree with psychological support and more restricted surgical procedures. Outcome studies after genital surgery often lack of patient's perspective.</p></div><div type="abstract" xml:lang="en"><p><b>OBJECTIVE</b></p><p>To describe surgical procedures in relation to diagnosis, to evaluate the outcomes of surgery through genital examination, and through patient's and observer's satisfaction with the anatomical and functional result after genital surgery.</p></div><div type="abstract" xml:lang="en"><p><b>STUDY DESIGN</b></p><p>In a cross-sectional clinical study performed in six European countries in 2014/15, we have included 500 participants where surgery was performed, from a total of 1040 adolescents (≥16years) and adults with a DSD. Diagnoses included Turner syndrome (n = 301), mixed gonadal dysgenesis (45,XO/46,XY; n = 45), Klinefelter syndrome (n = 218), XYY (n = 1), 46, XY DSD (n = 222) and 46, XX DSD (n = 253). Study protocol included clinical report files, an optional gynecological or urological examination, patient reported outcomes including received surgical interventions, satisfaction with appearance and function after surgery, and impact of the surgical procedure on life.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>Five hundred participants had received genital or breast surgery, with the highest rate in 46, XY DSD and the lowest in Turner syndrome. Altogether; 240 participants had feminizing surgery, 112 had masculinizing surgery, and 217 underwent gonadectomy. Physicians evaluated anatomical appearance at genital examination as poor in less than 10%. Dissatisfaction with anatomical appearance was reported by 22% of the participants, dissatisfaction with function by 20%. Being (very) dissatisfied with anatomical appearance and function was reported by 13% of the study participants. Most participants reported no impact, or positive impact, of the surgical procedures on their lives, but 29% experienced a negative effect of gonadectomy on their life.</p></div><div type="abstract" xml:lang="en"><p><b>DISCUSSION</b></p><p>There might be a selection bias and/or a recall bias for participating in our studies. Due to poor data quality about surgical procedures performed in the past, we also relied on participants memory about surgical procedures in their past. Ideally, patient reported outcomes should be evaluated both before and after surgical procedures.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSION</b></p><p>A vast majority are satisfied with appearance and function, but still genital or breast surgery have a long-lasting effect on patient's life. Self-reported satisfaction is usually lower than the observer's evaluation regarding both appearance and function.</p></div></front></TEI><pubmed><MedlineCitation Status="Publisher" Owner="NLM"><PMID Version="1">33358555</PMID><DateRevised><Year>2020</Year><Month>12</Month><Day>28</Day></DateRevised><Article PubModel="Print-Electronic"><Journal><ISSN IssnType="Electronic">1873-4898</ISSN><JournalIssue CitedMedium="Internet"><PubDate><Year>2020</Year><Month>Dec</Month><Day>13</Day></PubDate></JournalIssue><Title>Journal of pediatric urology</Title><ISOAbbreviation>J Pediatr Urol</ISOAbbreviation></Journal><ArticleTitle>Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).</ArticleTitle><ELocationID EIdType="pii" ValidYN="Y">S1477-5131(20)30723-3</ELocationID><ELocationID EIdType="doi" ValidYN="Y">10.1016/j.jpurol.2020.12.007</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">Surgery is performed in many individuals with disorders/differences of sex development (DSD). Irreversibility of some surgical procedures, lack of information about the procedures, and lack of follow-up care for physical and psychological outcomes, lead to wish for more knowledge from both surgeons and patients. After the consensus conference in 2006, multidisciplinary care is provided to a higher degree with psychological support and more restricted surgical procedures. Outcome studies after genital surgery often lack of patient's perspective.</AbstractText><AbstractText Label="OBJECTIVE" NlmCategory="OBJECTIVE">To describe surgical procedures in relation to diagnosis, to evaluate the outcomes of surgery through genital examination, and through patient's and observer's satisfaction with the anatomical and functional result after genital surgery.</AbstractText><AbstractText Label="STUDY DESIGN" NlmCategory="METHODS">In a cross-sectional clinical study performed in six European countries in 2014/15, we have included 500 participants where surgery was performed, from a total of 1040 adolescents (≥16years) and adults with a DSD. Diagnoses included Turner syndrome (n = 301), mixed gonadal dysgenesis (45,XO/46,XY; n = 45), Klinefelter syndrome (n = 218), XYY (n = 1), 46, XY DSD (n = 222) and 46, XX DSD (n = 253). Study protocol included clinical report files, an optional gynecological or urological examination, patient reported outcomes including received surgical interventions, satisfaction with appearance and function after surgery, and impact of the surgical procedure on life.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">Five hundred participants had received genital or breast surgery, with the highest rate in 46, XY DSD and the lowest in Turner syndrome. Altogether; 240 participants had feminizing surgery, 112 had masculinizing surgery, and 217 underwent gonadectomy. Physicians evaluated anatomical appearance at genital examination as poor in less than 10%. Dissatisfaction with anatomical appearance was reported by 22% of the participants, dissatisfaction with function by 20%. Being (very) dissatisfied with anatomical appearance and function was reported by 13% of the study participants. Most participants reported no impact, or positive impact, of the surgical procedures on their lives, but 29% experienced a negative effect of gonadectomy on their life.</AbstractText><AbstractText Label="DISCUSSION" NlmCategory="CONCLUSIONS">There might be a selection bias and/or a recall bias for participating in our studies. Due to poor data quality about surgical procedures performed in the past, we also relied on participants memory about surgical procedures in their past. Ideally, patient reported outcomes should be evaluated both before and after surgical procedures.</AbstractText><AbstractText Label="CONCLUSION" NlmCategory="CONCLUSIONS">A vast majority are satisfied with appearance and function, but still genital or breast surgery have a long-lasting effect on patient's life. Self-reported satisfaction is usually lower than the observer's evaluation regarding both appearance and function.</AbstractText><CopyrightInformation>Copyright © 2020 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.</CopyrightInformation></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Rapp</LastName><ForeName>Marion</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538, Germany. Electronic address: marion.rapp@gmx.de.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Duranteau</LastName><ForeName>Lise</ForeName><Initials>L</Initials><AffiliationInfo><Affiliation>Adolescent and Young Adult Gynecology Unit, Centre de Reference des Maladies Rares du Développement Génital, Hôpital Bicêtre, AP.HP Paris Saclay University, 78 rue du General Leclerc, Le Kremlin Bicêtre, 94270, France. Electronic address: lise.duranteau@aphp.fr.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>van de Grift</LastName><ForeName>Tim C</ForeName><Initials>TC</Initials><AffiliationInfo><Affiliation>Department of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam. 1007, the Netherlands; Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: t.vandegrift@amsterdamumc.nl.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Schober</LastName><ForeName>Justine</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>UPMC Hamot, Department of Urology, 201 State St. Erie, PA, 16550, USA. Electronic address: schobermd@aol.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Hirschberg</LastName><ForeName>Angelica L</ForeName><Initials>AL</Initials><AffiliationInfo><Affiliation>Department of Women's and Children's Health, Karolinska Institutet, Department of Gynaecology and Reproductive Medicine, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: Angelica.Hirschberg.Linden@ki.se.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Krege</LastName><ForeName>Susanne</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Kliniken Essen-Mitte, Klinik fur Urologie, Kinderurologie und urologische Onkologie, Evangelische Huyssens Stiftung/Knappschaft GmbH, Essen, 45136, Germany. Electronic address: S.Krege@kem-med.com.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Nordenstrom</LastName><ForeName>Anna</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, 171 76, Sweden. Electronic address: anna.nordenstrom@ki.se.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Roehle</LastName><ForeName>Robert</ForeName><Initials>R</Initials><AffiliationInfo><Affiliation>Charité - Universitätsmedizin Berlin, Coordinating Center for Clinical Studies, Berlin, 13353, Germany. Electronic address: robert.roehle@charite.de.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Thyen</LastName><ForeName>Ute</ForeName><Initials>U</Initials><AffiliationInfo><Affiliation>Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, Lubeck, 23538, Germany. Electronic address: ute.thyen@uksh.de.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Bouvattier</LastName><ForeName>Claire</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>Endocrinologie pediatrique, Centre de Reference des Maladies Rares du Développement Génital, Hôpitaux Universitaires Paris Saclay (Bicêtre), 78 rue du General Leclerc, Le Kremlin Bicetre, 94270, France. Electronic address: claire.bouvattier@aphp.fr.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Kreukels</LastName><ForeName>Baudewijntje P C</ForeName><Initials>BPC</Initials><AffiliationInfo><Affiliation>Department of Medical Psychology, Amsterdam University Medical Centers, location VUmc, PO Box 7057, Amsterdam, 1007, the Netherlands. Electronic address: B.Kreukels@amsterdamumc.nl.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Nordenskjold</LastName><ForeName>Agneta</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Department of Women's and Children's Health and Centre for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden; Pediatric Surgery, Astrid Lindgren Children Hospital, Karolinska University Hospital, Stockholm, Sweden. Electronic address: Agneta.Nordenskjold@ki.se.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><CollectiveName>dsd-LIFE group</CollectiveName></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2020</Year><Month>12</Month><Day>13</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>J Pediatr Urol</MedlineTA><NlmUniqueID>101233150</NlmUniqueID><ISSNLinking>1477-5131</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Breast surgery</Keyword><Keyword MajorTopicYN="N">Clinical examination</Keyword><Keyword MajorTopicYN="N">Disorders of sex development</Keyword><Keyword MajorTopicYN="N">Genital surgery</Keyword><Keyword MajorTopicYN="N">Patient reported outcome</Keyword></KeywordList><CoiStatement>Conflicts of interest The authors have no competing interests.</CoiStatement><InvestigatorList><Investigator ValidYN="Y"><LastName>Kohler</LastName><ForeName>Birgit</ForeName><Initials>B</Initials></Investigator><Investigator ValidYN="Y"><LastName>Neumann</LastName><ForeName>Uta</ForeName><Initials>U</Initials></Investigator><Investigator ValidYN="Y"><LastName>Cohen-Kettenis</LastName><ForeName>Peggy</ForeName><Initials>P</Initials></Investigator><Investigator ValidYN="Y"><LastName>Kreukels</LastName><ForeName>Baudewijntje</ForeName><Initials>B</Initials></Investigator><Investigator ValidYN="Y"><LastName>de Vries</LastName><ForeName>Annelou</ForeName><Initials>A</Initials></Investigator><Investigator ValidYN="Y"><LastName>Arlt</LastName><ForeName>Wiebke</ForeName><Initials>W</Initials></Investigator><Investigator ValidYN="Y"><LastName>Wiesemann</LastName><ForeName>Claudia</ForeName><Initials>C</Initials></Investigator><Investigator ValidYN="Y"><LastName>Slowikowska-Hilczer</LastName><ForeName>Jolanta</ForeName><Initials>J</Initials></Investigator><Investigator ValidYN="Y"><LastName>Thyen</LastName><ForeName>Ute</ForeName><Initials>U</Initials></Investigator><Investigator ValidYN="Y"><LastName>Rapp</LastName><ForeName>Marion</ForeName><Initials>M</Initials></Investigator><Investigator ValidYN="Y"><LastName>de la Perriere</LastName><ForeName>Aude Brac</ForeName><Initials>AB</Initials></Investigator><Investigator ValidYN="Y"><LastName>Sultan</LastName><ForeName>Charles</ForeName><Initials>C</Initials></Investigator><Investigator ValidYN="Y"><LastName>Paris</LastName><ForeName>Francoise</ForeName><Initials>F</Initials></Investigator><Investigator ValidYN="Y"><LastName>Reisch</LastName><ForeName>Nicole</ForeName><Initials>N</Initials></Investigator><Investigator ValidYN="Y"><LastName>Richter-Unruh</LastName><ForeName>Annette</ForeName><Initials>A</Initials></Investigator><Investigator ValidYN="Y"><LastName>van der Grinten</LastName><ForeName>Hedi Claahsen</ForeName><Initials>HC</Initials></Investigator><Investigator ValidYN="Y"><LastName>Bouvattier</LastName><ForeName>Claire</ForeName><Initials>C</Initials></Investigator><Investigator ValidYN="Y"><LastName>Duranteau</LastName><ForeName>Lise</ForeName><Initials>L</Initials></Investigator><Investigator ValidYN="Y"><LastName>Nordenström</LastName><ForeName>Anna</ForeName><Initials>A</Initials></Investigator><Investigator ValidYN="Y"><LastName>Nordenskjöld</LastName><ForeName>Agneta</ForeName><Initials>A</Initials></Investigator><Investigator ValidYN="Y"><LastName>Pienkowski</LastName><ForeName>Catherine</ForeName><Initials>C</Initials></Investigator><Investigator ValidYN="Y"><LastName>Szarras-Czapnik</LastName><ForeName>Maria</ForeName><Initials>M</Initials></Investigator></InvestigatorList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2020</Year><Month>08</Month><Day>14</Day></PubMedPubDate><PubMedPubDate PubStatus="revised"><Year>2020</Year><Month>11</Month><Day>14</Day></PubMedPubDate><PubMedPubDate PubStatus="accepted"><Year>2020</Year><Month>12</Month><Day>08</Day></PubMedPubDate><PubMedPubDate PubStatus="entrez"><Year>2020</Year><Month>12</Month><Day>28</Day><Hour>10</Hour><Minute>37</Minute></PubMedPubDate><PubMedPubDate PubStatus="pubmed"><Year>2020</Year><Month>12</Month><Day>29</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate><PubMedPubDate PubStatus="medline"><Year>2020</Year><Month>12</Month><Day>29</Day><Hour>6</Hour><Minute>0</Minute></PubMedPubDate></History><PublicationStatus>aheadofprint</PublicationStatus><ArticleIdList><ArticleId IdType="pubmed">33358555</ArticleId><ArticleId IdType="pii">S1477-5131(20)30723-3</ArticleId><ArticleId IdType="doi">10.1016/j.jpurol.2020.12.007</ArticleId></ArticleIdList></PubmedData></pubmed><affiliations><list><country><li>Allemagne</li><li>France</li><li>Pays-Bas</li><li>Suède</li><li>États-Unis</li></country><region><li>Berlin</li><li>Svealand</li><li>Île-de-France</li></region><settlement><li>Berlin</li><li>Stockholm</li></settlement></list><tree><country name="Allemagne"><noRegion><name sortKey="Rapp, Marion" sort="Rapp, Marion" uniqKey="Rapp M" first="Marion" last="Rapp">Marion Rapp</name></noRegion><name sortKey="Krege, Susanne" sort="Krege, Susanne" uniqKey="Krege S" first="Susanne" last="Krege">Susanne Krege</name><name sortKey="Roehle, Robert" sort="Roehle, Robert" uniqKey="Roehle R" first="Robert" last="Roehle">Robert Roehle</name><name sortKey="Thyen, Ute" sort="Thyen, Ute" uniqKey="Thyen U" first="Ute" last="Thyen">Ute Thyen</name></country><country name="France"><region name="Île-de-France"><name sortKey="Duranteau, Lise" sort="Duranteau, Lise" uniqKey="Duranteau L" first="Lise" last="Duranteau">Lise Duranteau</name></region><name sortKey="Bouvattier, Claire" sort="Bouvattier, Claire" uniqKey="Bouvattier C" first="Claire" last="Bouvattier">Claire Bouvattier</name></country><country name="Pays-Bas"><noRegion><name sortKey="Van De Grift, Tim C" sort="Van De Grift, Tim C" uniqKey="Van De Grift T" first="Tim C" last="Van De Grift">Tim C. Van De Grift</name></noRegion><name sortKey="Kreukels, Baudewijntje P C" sort="Kreukels, Baudewijntje P C" uniqKey="Kreukels B" first="Baudewijntje P C" last="Kreukels">Baudewijntje P C. Kreukels</name></country><country name="États-Unis"><noRegion><name sortKey="Schober, Justine" sort="Schober, Justine" uniqKey="Schober J" first="Justine" last="Schober">Justine Schober</name></noRegion></country><country name="Suède"><noRegion><name sortKey="Hirschberg, Angelica L" sort="Hirschberg, Angelica L" uniqKey="Hirschberg A" first="Angelica L" last="Hirschberg">Angelica L. Hirschberg</name></noRegion><name sortKey="Nordenskjold, Agneta" sort="Nordenskjold, Agneta" uniqKey="Nordenskjold A" first="Agneta" last="Nordenskjold">Agneta Nordenskjold</name><name sortKey="Nordenstrom, Anna" sort="Nordenstrom, Anna" uniqKey="Nordenstrom A" first="Anna" last="Nordenstrom">Anna Nordenstrom</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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