Anexă din 8 noiembrie 2010



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│adulţi şi bătrâni; un │zilnice, activităţi sociale, suport │(800)369-6669 │

│chart pentru dializă) │social, durere, sănătate generală, │Attn: John Wasson, MD │

│ │calitate a vieţii, financiar, boli, │Web: http://home.fnxnet.com │

│ │simptome/probleme, limite impuse de │ │

│ │dializă) │ │

│ │Cost: depinde de alegerea metodei de │ │

│ │scorizare │ │

│ │Versiune automatizată: Nu │ │

│ │Scorizare/analiză: mai multe opţiuni │ │

│ │Limba: engleza │ │

│ │Versiune pentru ambliopi: litere mari, │ │

│ │desene │ │

├──────────────────────────┼─────────────────────────────────────────┼──────────────────────────────────┤

│Duke Health Profile (DUKE)│Timp: 5 min │George Parkerson Jr, MD │

│(generic) │Domenii (generice): sănătate fizica, │Department of Community & Family │

│ │sănătate mentală, sănătate socială, │Medicine │

│ │sănătate generală, sănătate percepută, │Duke University Medical Center │

│ │stima de sine, anxietate, depresie, │Box 3886 │

│ │anxietate-depresie, durere, disabilitate │Durham NC 27710 │

│ │Cost: liber pentru utilizare non- │(919) 681-6560 │

│ │comercială; │Email: george.parkerson@duke.edu │

│ │manual 30USD │Web: www.qlmed.org/duke/ │

│ │Versiune automatizată: Duke University │ │

│ │Medical Center │ │

│ │Limbaj: 21 │ │

│ │Scorizare/analiză: Duke University │ │

│ │Medical Center │ │

│ │Versiune pentru ambliopi: nu │ │

├──────────────────────────┼─────────────────────────────────────────┼──────────────────────────────────┤

│Kidney Disease Quality of │Timp: 30 min (forma lungă), 16 min │KDQOL Working Group c/o Karen │

│Life (KDQOL^TM) │(forma scurtă) │Spritzer │

│(specific pentru TSFR) │Domenii: generice (funcţionare fizică, │UCLA School of Medicine │

│ │limitare a rolului de cauză fizică, │Division of General Internal │

│ │durere corporală, sănătate generală, │Medicine & Health Services │

│ │sănătate generală, vitalitate, funcţio- │Research, 911 Broxton Plaza, │

│ │nare socială, limitare a rolului de cauză│Room 206 │

│ │emoţională, sănătate mentală) şi speci- │Box 951736 │

│ │fice (simptome/probleme, efectele bolii │Los Angeles, CA 90095-1736 │

│ │de rinichi asupra vieţii de zi cu zi, │Fax: 310-794-0732 │

│ │limitările determinate de boala de │Email: KSpritzer@mednet.ucla.edu │

│ │rinichi, funcţia cognitivă, status-ul │Email to KDQOL group: │

│ │profesional, funcţia sexuală, calitatea │kdqol@rand.org │

│ │interacţiunii sociale, somn │Web: www.gim.med.ucla.edu/kdqol/ │

│ │Cost: liber │Sau │

│ │Versiune automatizata: HDO la (770) │RAND Corp. │

│ │889-5558 │1333 H St., NW Washington, │

│ │Scorizare/analiză: HDO la (770) 889-5558 │DC 20004-4792 │

│ │Limbaj: 28 (versiunea română în curs de │Attn: Caren Kamberg │

│ │validare) │E-mail: caren_kamberg@rand.org │

│ │Versiune pentreu ambliopi: litere mari │Web: www.qlmed.org/KDQOL/index.html

├──────────────────────────┼─────────────────────────────────────────┼──────────────────────────────────┤

│Medical Outcomes Study 36 │Timp: 12-15 min │Quality Metric Inc. │

│Item Short Form │Domenii: generice (funcţionare fizică, │640 George Washington Hwy Ste 201 │

│ │limitare a rolului de cauză fizică, │Lincoln, Rl 02865 │

│ │durere corporală, sănătate generală, │(888) 947-9800 │

│ │vitalitate, funcţionare socială, limitare│Email: Info@qmetric.com │

│ │a rolului da cauză emotională, sănătate │Web: www.qlmed.org/SF-36/Index.html

│ │mentală) │sau │

│ │Cost: liber, copie cu permisiune │http://sf-36.org/ │

│ │Scorizare/analiza: Quality Metric, │sau │

│ │Inc. (401) 334-8800 │RAND Corp. │

│ │Limba: 22 │1333 H St., NW Washington, │

│ │Versiune pentru ambliopi: nu │DC 20004-4792 │

│ │ │Attn: Caren Kamberg │

│ │ │E-mail: caren_kamberg@rand.org │

│ │ │Web: www.qlmed.org/KDQOL/index. │

│ │ │html │

│ │ │http://www.rand.org/health/ │

│ │ │surveys_tools/mos/mos_core_ │

│ │ │36item.html │

└──────────────────────────┴─────────────────────────────────────────┴──────────────────────────────────┘

*ST*

PROBLEME DE IMPLEMENTARE



Cercetătorii pot utiliza numeroase instrumente pentru evaluarea calităţii vieţii la pacientul cu BCR, însă clinicianul are nevoie să ştie ce instrument să aplice, când să-l aplice, cine să-l adminstreze, să calculeze scorurile şi să analizeze datele. În general, este practic să se utilizeze doar câteva instrumente, cu care echipa de IMD să se familiarizeze. Instrumentele care întrunesc caracterele de validitate, reliabilitate, sensibilitate, interpretabilitate şi aplicabilitate sunt Dartmouth COOP Charts, DUKE Health Profiles, Kidney Disease Quality of Life şi SF-36. Acestea prezintă şi avantajul că au fost larg utilizate la pacienţii dializaţi şi transplantaţi. În cursul practicii clinice, uşurinţa în utilizare este esenţială. Aceste instrumente sunt recomandate pentru că fiecare posedă câte un manual de utilizare, iar pacientul le poate completa independent sau cu asistenţă minimă.

Pentru evaluarea problemelor legate de status-ul funcţional şi starea de bine, echipa de IMD poate suplimenta aceste instrumente cu alte mai specifice, incluzând teste bazate pe performanţă privitoare la funcţia fizică şi teste psihologice.

Recomandări de cercetare

Cercetările efectuate pe pacienţii dializaţi au demonstrat că status-ul funcţional şi starea de bine pretratament sunt indicatori prognostici ai evoluţiei post-tratament. În consecinţă, pentru evaluarea relaţiei dintre FG şi toate domeniile status-ului funcţional şi stării de bine de-a lungul progresiei bolii renale, sunt necesare studii longitudinale de mari dimensiuni. Trebuie efectuate cercetări cu mai multe instrumente standardizate în scopul comparării rezultatelor acestora. Trebuie evaluate rezultatele oricărei medicaţii sau intervenţii medicale susceptibile de a modifica rezultatele instrumentelor. Întrucât probleme cum ar fi anemia, boala osoasă renală, boala cardio-vasculară şi diabetul zaharat pot afecta calitatea vieţii, trebuie studiate în ce măsură tratarea corectă a acestora ameliorează status-ul funcţional şi starea de bine. În sfârşit, cercetătorii trebuie să examineze eficienţa intervenţiilor de reabilitare în stadiile precoce ale BCR. Rezolvarea acestor probleme ar oferi dovezi ştiinifice suplimentare pentru efectele funcţiei renale şi ale tratamentului asupra riscului pacientului de a dezvolta disfuncţie, spitalizare şi deces şi ar creşte înţelegerea asupra intervenţiilor care ar ameliora calitatea vieţii şi ar reduce efectele BCR asupra pacientului, familiei lui şi societăţii.

Instrucţiuni/recomandări

Modificările la nivelul percepţiei calităţii vieţii (status funcţional şi stare de bine) apar în timpul evoluţiei BCR şi se asociază cu prognostic infaust. Aceste alterări pot fi determinate de factor socio-demografici, cauzele BCR, complicaţiile BCR sau direct de reducerea FG.


Recomandare 18. Pacienţii cu FG <30 mL/min/1.73 m² trebuie să fie periodic evaluaţi pentru indicii calităţii vieţii (status funcţional şi stare de bine). (Gradul B)

- pentru stabilirea nivelului de bază şi monitorizarea modificărilor apărute în timp; (Gradul B)

- pentru evaluarea efectului intervenţiilor asupra status-ului funcţional şi a stării de bine. (Gradul B)

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