<?xml version="1.0" encoding="UTF-8"?><?xml-stylesheet type="text/xsl" href="static/style.xsl"?><OAI-PMH xmlns="http://www.openarchives.org/OAI/2.0/" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.openarchives.org/OAI/2.0/ http://www.openarchives.org/OAI/2.0/OAI-PMH.xsd"><responseDate>2026-04-13T05:05:12Z</responseDate><request verb="GetRecord" identifier="oai:www.recercat.cat:11351/11535" metadataPrefix="marc">https://recercat.cat/oai/request</request><GetRecord><record><header><identifier>oai:recercat.cat:11351/11535</identifier><datestamp>2025-10-24T10:22:59Z</datestamp><setSpec>com_2072_378070</setSpec><setSpec>com_2072_378040</setSpec><setSpec>col_2072_378092</setSpec></header><metadata><record xmlns="http://www.loc.gov/MARC21/slim" xmlns:dcterms="http://purl.org/dc/terms/" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xmlns:doc="http://www.lyncode.com/xoai" xsi:schemaLocation="http://www.loc.gov/MARC21/slim http://www.loc.gov/standards/marcxml/schema/MARC21slim.xsd">
   <leader>00925njm 22002777a 4500</leader>
   <datafield ind2=" " ind1=" " tag="042">
      <subfield code="a">dc</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Southern, Kevin</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">BATTEZZATI, ALBERTO</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Berry, Claire</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Bouchara, Jean-Philippe</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Gartner Tizzano, Silvia</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Burgel, Pierre Regis</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="720">
      <subfield code="a">Addy, Charlotte</subfield>
      <subfield code="e">author</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="260">
      <subfield code="c">2024-05-31T11:24:07Z</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="260">
      <subfield code="c">2024-05-31T11:24:07Z</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="260">
      <subfield code="c">2024-03</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="520">
      <subfield code="a">Complications; Cystic fibrosis; Lung infection</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="520">
      <subfield code="a">Complicacions; Fibrosi quística; Infecció pulmonar</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="520">
      <subfield code="a">Complicaciones; Fibrosis quística; Infección pulmonar</subfield>
   </datafield>
   <datafield ind2=" " ind1=" " tag="520">
      <subfield code="a">This is the third in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on recognising and addressing CF health issues. The guidance was produced with wide stakeholder engagement, including people from the CF community, using an evidence-based framework. Authors contributed sections, and summary statements which were reviewed by a Delphi consultation.&#xd;
Monitoring and treating airway infection, inflammation and pulmonary exacerbations remains important, despite the widespread availability of CFTR modulators and their accompanying health improvements. Extrapulmonary CF-specific health issues persist, such as diabetes, liver disease, bone disease, stones and other renal issues, and intestinal obstruction. These health issues require multidisciplinary care with input from the relevant specialists. Cancer is more common in people with CF compared to the general population, and requires regular screening. The CF life journey requires mental and emotional adaptation to psychosocial and physical challenges, with support from the CF team and the CF psychologist. This is particularly important when life gets challenging, with disease progression requiring increased treatments, breathing support and potentially transplantation. Planning for end of life remains a necessary aspect of care and should be discussed openly, honestly, with sensitivity and compassion for the person with CF and their family.&#xd;
CF teams should proactively recognise and address CF-specific health issues, and support mental and emotional wellbeing while accompanying people with CF and their families on their life journey.</subfield>
   </datafield>
   <datafield ind1="8" ind2=" " tag="024">
      <subfield code="a">http://hdl.handle.net/11351/11535</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Pacients - Satisfacció</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Fibrosi quística - Tractament</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Atenció primària</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">DISEASES::Respiratory Tract Diseases::Lung Diseases::Cystic Fibrosis</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Other subheadings::Other subheadings::/therapy</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">HEALTH CARE::Environment and Public Health::Public Health::Epidemiologic Measurements::Demography::Health Status::Quality of Life</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">HEALTH CARE::Health Services Administration::Quality of Health Care::Quality Indicators, Health Care::Standard of Care</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">ENFERMEDADES::enfermedades respiratorias::enfermedades pulmonares::fibrosis quística</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">Otros calificadores::Otros calificadores::/terapia</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">ATENCIÓN DE SALUD::ambiente y salud pública::salud pública::medidas epidemiológicas::demografía::estado de salud::calidad de vida</subfield>
   </datafield>
   <datafield tag="653" ind2=" " ind1=" ">
      <subfield code="a">ATENCIÓN DE SALUD::administración de los servicios de salud::gestión de la atención al paciente::atención integral de salud::atención primaria de la salud</subfield>
   </datafield>
   <datafield ind2="0" ind1="0" tag="245">
      <subfield code="a">Standards for the care of people with cystic fibrosis (CF); recognising and addressing CF health issues</subfield>
   </datafield>
</record></metadata></record></GetRecord></OAI-PMH>