{"id":1871,"date":"2020-09-01T12:20:50","date_gmt":"2020-09-01T11:20:50","guid":{"rendered":"http:\/\/mmcup.se\/?page_id=1871"},"modified":"2024-11-20T11:33:09","modified_gmt":"2024-11-20T10:33:09","slug":"samordnad-vard-vid-ryggmargsbrack-professionens-ansvar","status":"publish","type":"page","link":"https:\/\/mmcup.se\/?page_id=1871","title":{"rendered":"Kapitel 2 &#8211; Samordnad v\u00e5rd &#8211; checklista vid uppf\u00f6ljningsbes\u00f6k"},"content":{"rendered":"\n<figure class=\"wp-block-image size-full is-resized\"><a href=\"http:\/\/mmcup.se\/wp-content\/uploads\/2022\/11\/Kap-2-Samordnad-vard-checklista-vid-uppfoljningsbesok.pdf\"><img data-recalc-dims=\"1\" decoding=\"async\" src=\"https:\/\/i0.wp.com\/mmcup.se\/wp-content\/uploads\/2022\/11\/PDF_ikon.png?ssl=1\" alt=\"\" class=\"wp-image-3224\" style=\"width:39px;height:39px\"\/><\/a><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\"><strong>Det sv\u00e5raste f\u00f6r patienter med ryggm\u00e4rgsbr\u00e5ck \u00e4r oftast att ta initiativ till och genomf\u00f6ra olika aktiviteter. Det g\u00e4ller ocks\u00e5 f\u00f6r att ta kontakt med sjukv\u00e5rd\/habilitering, komma till avtalade bes\u00f6k och f\u00f6r egenv\u00e5rd. Det blir ofta inte av. Dessa sv\u00e5righeter (exekutiv dysfunktion) h\u00f6r samman med diagnosen ryggm\u00e4rgsbr\u00e5ck. Ansvaret f\u00f6r samordningen och att uppf\u00f6ljningen kommer till st\u00e5nd m\u00e5ste d\u00e4rf\u00f6r ligga hos professionen, inte hos patienten.<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Vid ryggm\u00e4rgsbr\u00e5ck finns risk f\u00f6r allvarliga komplikationer, som kan komma pl\u00f6tsligt eller smygande, men som \u00e4r m\u00f6jliga att f\u00f6rebygga. F\u00f6rs\u00e4mrad syn, kognitiv f\u00f6rm\u00e5ga och g\u00e5ngf\u00f6rm\u00e5ga, urin- och avf\u00f6ringsinkontinens, njurskada, andningsst\u00f6rning, trycks\u00e5r och amputation \u00e4r exempel p\u00e5 komplikationer som kan f\u00f6rebyggas. Exempel p\u00e5 d\u00f6dsorsaker som ofta kan f\u00f6rebyggas vid ryggm\u00e4rgsbr\u00e5ck \u00e4r shuntsvikt, sepsis (blodf\u00f6rgiftning) p.g.a. shunt- trycks\u00e5rs- eller urinv\u00e4gsinfektioner, andningsuppeh\u00e5ll, sv\u00e5r skolios med andningssvikt, och latexallergi.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Ryggm\u00e4rgsbr\u00e5ck medf\u00f6r ett livsl\u00e5ngt behov av allsidiga habiliterande \u00e5tg\u00e4rder, och samordnad, strukturerad medicinsk uppf\u00f6ljning f\u00f6r att f\u00f6rebygga allvarliga och potentiellt livshotande komplikationer. Mortalitet och morbiditet vid ryggm\u00e4rgsbr\u00e5ck \u00f6kar om samordning av sjukv\u00e5rdsinsatser upph\u00f6r, och det g\u00e4ller \u00e4ven om sjukv\u00e5rden \u00e4r gratis och l\u00e4tt tillg\u00e4nglig (1). Avsaknad av koordinerad och planerad specialistv\u00e5rd i vuxen \u00e5lder kan ha sv\u00e5ra konsekvenser (2-3). Efter \u00f6verg\u00e5ng till vuxensjukv\u00e5rd rapporteras att personer med ryggm\u00e4rgsbr\u00e5ck i USA upps\u00f6ker sjukhusens akutmottagningar i st\u00f6rre utstr\u00e4ckning, medan andel planerade l\u00e4karkontakter minskar (4-6). Klinisk erfarenhet talar f\u00f6r att detta g\u00e4ller \u00e4ven i Sverige. Koordination av de medicinska insatserna upph\u00f6r idag ofta vid \u00f6verg\u00e5ngen fr\u00e5n barn- till vuxenverksamhet inom svensk habilitering, h\u00e4lso- och sjukv\u00e5rd.<\/p>\n\n\n\n<h4 class=\"wp-block-heading has-medium-font-size\"><strong>Rekommendationer<\/strong><\/h4>\n\n\n\n<ul style=\"font-size:18px\" class=\"wp-block-list\">\n<li>Sjukv\u00e5rden ska organiseras s\u00e5 att personer med ryggm\u00e4rgsbr\u00e5ck har tillg\u00e5ng till samordnade h\u00e4lso- och sjukv\u00e5rdsinsatser<em> <\/em>hela livet.<\/li>\n\n\n\n<li>Samordningsansvarig verksamhet<em> <\/em>kan vara prim\u00e4rv\u00e5rd eller specialistklinik beroende p\u00e5 lokala \u00f6verenskommelser.<\/li>\n\n\n\n<li>Samordningsansvarig verksamhet<em> <\/em>ska uppm\u00e4rksamma behov av och koordinera habiliteringsinsatser, lokala och regionala sjukv\u00e5rdsinsatser relaterade till diagnosen ryggm\u00e4rgsbr\u00e5ck.<\/li>\n\n\n\n<li>Samordningsansvarig verksamhet<em> <\/em>ska ansvara f\u00f6r att regelbundna uppf\u00f6ljningsbed\u00f6mningar kommer till st\u00e5nd<em>.<\/em><\/li>\n\n\n\n<li>MMCUPs rekommendationer om uppf\u00f6ljningsintervall och inneh\u00e5ll<em> <\/em>finns p\u00e5 <a href=\"http:\/\/www.mmcup.se\/\">www.mmcup.se.<\/a><\/li>\n\n\n\n<li>Checklista f\u00f6r medicinsk uppf\u00f6ljning<em> <\/em>f\u00f6r utskrift finns l\u00e4ngre ner p\u00e5 sidan.<br>MMCUP-formul\u00e4r \u201d7.2 <a href=\"https:\/\/mmcup.se\/wp-content\/uploads\/2018\/08\/07_2_2018-05-07_MMCUP_Liten-genomg%C3%A5ng.pdf\" data-type=\"link\" data-id=\"https:\/\/mmcup.se\/wp-content\/uploads\/2018\/08\/07_2_2018-05-07_MMCUP_Liten-genomg%C3%A5ng.pdf\">Liten genomg\u00e5ng<\/a>\u201d och \u201d5.1 <a href=\"https:\/\/mmcup.se\/wp-content\/uploads\/2024\/07\/5_3_Urotarmformular-20240603.pdf\" data-type=\"link\" data-id=\"https:\/\/mmcup.se\/wp-content\/uploads\/2024\/07\/5_3_Urotarmformular-20240603.pdf\">Uro-mottagning<\/a>\u201d inneh\u00e5ller ocks\u00e5 anv\u00e4ndbara fr\u00e5gor.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"has-medium-font-size wp-block-paragraph\"><strong>Checklista l\u00e4karbes\u00f6k ryggm\u00e4rgsbr\u00e5ck<\/strong><strong><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">M\u00e5nga patienter med ryggm\u00e4rgsbr\u00e5ck har sv\u00e5rt att svara p\u00e5 stora \u00f6ppna fr\u00e5gor och beh\u00f6ver d\u00e4rf\u00f6r konkreta fr\u00e5gor p\u00e5 varje omr\u00e5de. St\u00e4ll m\u00e5nga f\u00f6ljdfr\u00e5gor!<\/p>\n\n\n\n<p class=\"wp-block-paragraph\" style=\"font-size:18px\">Efter bes\u00f6ket l\u00e4mna en kort skriftlig sammanfattning till patienten.<\/p>\n\n\n\n<figure style=\"font-size:16px\" class=\"wp-block-table\"><table><tbody><tr><td>Problemomr\u00e5den<\/td><td>Eventuella \u00e5tg\u00e4rder<\/td><\/tr><tr><td><strong>V\u00e5rdkontakter<\/strong> P\u00e5g\u00e5ende utredningar\/<br>behandlingar<\/td><td>Skicka eventuellt kopia f\u00f6r k\u00e4nnedom<\/td><\/tr><tr><td><strong>Sjukhusv\u00e5rd<\/strong> <strong>I<\/strong>nneliggande v\u00e5rd, operationer, frakturer sedan f\u00f6reg\u00e5ende bes\u00f6k?<\/td><td>Eventuellt utredning och behandling av osteoporos<\/td><\/tr><tr><td><strong>Urologiskt<\/strong><br>Urologiska insatser sedan f\u00f6reg\u00e5ende bes\u00f6k?<\/td><td>&nbsp;<\/td><\/tr><tr><td><strong>Shuntdysfunktion<\/strong><br>Huvudv\u00e4rk, tr\u00f6tthet, kr\u00e4kningar, synproblem, koncentrationssv\u00e5righeter?<\/td><td>Kontakta neurokirurg f\u00f6r samr\u00e5d; vid \u00f6kande\/nytillkomna besv\u00e4r akut remiss till NK<\/td><\/tr><tr><td><strong>Fj\u00e4ttrad m\u00e4rg-syndrom<\/strong><br>F\u00f6rs\u00e4mrad motorik eller k\u00e4nsel, f\u00f6r\u00e4ndrad urinbl\u00e5sefunktion, sm\u00e4rta, spasticitet?<\/td><td>Remiss till specialist, ev. MRT helrygg f\u00f6rst<\/td><\/tr><tr><td><strong>Kognition<br><\/strong>Behov av hj\u00e4lp f\u00f6r att komma ig\u00e5ng och\/eller genomf\u00f6ra? Hur fungerar p\u00e5minnelser, rutiner, strategier?<\/td><td>Remiss f\u00f6r neuropsykologisk utredning eller hj\u00e4lp med strategier, boendest\u00f6d mm<\/td><\/tr><tr><td><strong>Motorik<br><\/strong>G\u00e5ngf\u00f6rm\u00e5ga, fall? Fungerar liggande\/sittande, rullstol, ortoser? T\u00e4nk p\u00e5 fj\u00e4ttrad m\u00e4rg-syndrom, se ovan.<\/td><td>Remiss till fysioterapeut\/arbetsterapeut<\/td><\/tr><tr><td><strong>Tarm<br><\/strong>Hur t\u00f6mmer patienten tarmen? Hur ofta? H\u00e5rt\/L\u00f6st? L\u00e4ckage? Medicinering?<\/td><td>Justera medicinering och rutiner. Remiss till uro-tarmterapeut eller gastro-specialist.<\/td><\/tr><tr><td><strong>Bl\u00e5sa<br><\/strong>Hur kissar patienten? Hur ofta? L\u00e4ckage? Infektioner? Hj\u00e4lpmedel? Medicinering?<\/td><td>Remiss till urolog\/uroterapeut f\u00f6r uppf\u00f6ljning av bl\u00e5sa och njurar, hj\u00e4lpmedel, rutiner etc<\/td><\/tr><tr><td><strong>S\u00e5r<br><\/strong>Daglig koll av k\u00e4nselnedsatt hud? Vid s\u00e5r: Hur l\u00e4nge? Hur sk\u00f6ts de? Avlastning?<\/td><td>&nbsp;<\/td><\/tr><tr><td><strong>Sm\u00e4rta<br><\/strong>Var? Hur l\u00e4nge?<\/td><td>Sedvanlig utredning och behandling<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<figure style=\"font-size:16px\" class=\"wp-block-table\"><table><tbody><tr><td>Problemomr\u00e5de<\/td><td>Eventuella \u00e5tg\u00e4rder<\/td><\/tr><tr><td><strong>Motorisk och sensorisk funktion<\/strong><br>F\u00f6rs\u00e4mring som ger misstanke om shuntdysfunktion eller fj\u00e4ttrad m\u00e4rgsyndrom?<\/td><td>Remiss till specialist eller MR helrygg inf\u00f6r remiss till specialist<\/td><\/tr><tr><td><strong>Vikt och bukomf\u00e5ng<\/strong><\/td><td>Remiss f\u00f6r tr\u00e4ning, kostr\u00e5d<\/td><\/tr><tr><td><strong>Blodtryck<\/strong><\/td><td>Medicinering; Njurfunktion?<\/td><\/tr><tr><td><strong>Hudinspektion<\/strong><br>F\u00f6tter, s\u00e4te, s\u00e5r, tryckm\u00e4rken, \u00f6dem<\/td><td>Remiss till arbetsterapeut\/fysioterapeut f\u00f6r anpassning av sittande\/liggande. Remiss till distriktssk\u00f6terska\/s\u00e5rspecialist f\u00f6r s\u00e5rv\u00e5rd.<\/td><\/tr><tr><td><strong>Lab<br><\/strong>\u00d6vervaka njurfunktion med Cystatin C\/eGFR Cystatin C (frekvens och andra unders\u00f6kningar enl kapitel urologi som kommer). \u00d6verv\u00e4g basal provtagning, ex blod- och elstatus, p-glukos, D-vitamin, thyreoidea<\/td><td>&nbsp;<\/td><\/tr><\/tbody><\/table><\/figure>\n\n\n\n<h4 class=\"wp-block-heading has-medium-font-size\"><strong>Referenser<\/strong><\/h4>\n\n\n\n<ol style=\"font-size:18px;list-style-type:1\" class=\"wp-block-list\">\n<li>Kaufmann BA, Terbrock A, Winters N, Ito J, Kosterman A, Park TS. Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. Pediatr Neurosurg. 1994; 21:36-44<\/li>\n\n\n\n<li>Summers SJ, Elliott S, McAdams S, Oottamasathien S, Brant WO, Presson AP, et al. Urologic problems in spina bifida patients transitioning to adult care. Urology. (2014) ; 84: (2): 440-4.<\/li>\n\n\n\n<li>Le JT, Mukherjee S. Transition to adult care for patients with spina bifida. Phys Med Rehabil Clin N Am. (2015) ; 26: (1): 29-38.<\/li>\n\n\n\n<li>McDonnell GV, McCann JP. Why do adults with spina bifida and hydrocephalus die? A clinic based study. Eur J Pediatr Surg 2000;10(Suppl 1):31\u20132.<\/li>\n\n\n\n<li>Caterino JM, Scheatzle MD, D\u2019Antonio JA. Descriptive analysis of 258 emergency department visits by spina bifida patients. J Emerg Med. (2006) ; 31: (1): 17-22<\/li>\n\n\n\n<li>Young N, Anselmo LA, Burke, T A, McCormick A, Mukherjee S. Youth and young adults with spina bifida: their utilization of physician and hospital services Archives of Physical Medicine and Rehabilitation. 2014; 95:466-471):<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\"><em>Lena Westbom, docent, barnneurolog, Sk\u00e5nes universitetssjukhus<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">2018-07-01<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><a href=\"http:\/\/mmcup.se\/wp-content\/uploads\/2020\/09\/Checklista-uppfoljningsbesok-ryggmargsbrack.docx\">Checklista f\u00f6r utskrift<\/a><\/strong><\/p>\n<div class=\"pdfprnt-buttons pdfprnt-buttons-page pdfprnt-bottom-left\"><a href=\"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fpages%2F1871&print=print\" class=\"pdfprnt-button pdfprnt-button-print\" target=\"_blank\" ><img data-recalc-dims=\"1\" decoding=\"async\" src=\"https:\/\/i0.wp.com\/mmcup.se\/wp-content\/plugins\/pdf-print\/images\/print.png?ssl=1\" alt=\"image_print\" title=\"Print Content\" \/><span class=\"pdfprnt-button-title pdfprnt-button-print-title\">Skriv ut sida<\/span><\/a><\/div>","protected":false},"excerpt":{"rendered":"<p>Det sv\u00e5raste f\u00f6r patienter med ryggm\u00e4rgsbr\u00e5ck \u00e4r oftast att ta initiativ till och genomf\u00f6ra olika aktiviteter. Det g\u00e4ller ocks\u00e5 f\u00f6r att ta kontakt med sjukv\u00e5rd\/habilitering, komma till avtalade bes\u00f6k och f\u00f6r egenv\u00e5rd. Det blir ofta inte av. Dessa sv\u00e5righeter (exekutiv dysfunktion) h\u00f6r samman med diagnosen ryggm\u00e4rgsbr\u00e5ck. Ansvaret f\u00f6r samordningen och att uppf\u00f6ljningen kommer till st\u00e5nd [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"default","site-content-layout":"default","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-1871","page","type-page","status-publish","hentry"],"jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/1871","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1871"}],"version-history":[{"count":16,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/1871\/revisions"}],"predecessor-version":[{"id":4232,"href":"https:\/\/mmcup.se\/index.php?rest_route=\/wp\/v2\/pages\/1871\/revisions\/4232"}],"wp:attachment":[{"href":"https:\/\/mmcup.se\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1871"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}