The Development of PROQOL-HIV: An International Instrument to Assess the Health-Related Quality of Life of Persons Living With HIV/AIDS
Identifieur interne : 005851 ( Main/Exploration ); précédent : 005850; suivant : 005852The Development of PROQOL-HIV: An International Instrument to Assess the Health-Related Quality of Life of Persons Living With HIV/AIDS
Auteurs : Martin Duracinsky [France] ; Susan Herrmann [Australie] ; Baiba Berzins [États-Unis] ; Andrew R. Armstrong [France] ; Rewa Kohli [Inde] ; Sophie Le Coeur [France, Thaïlande] ; Assane Diouf [Sénégal] ; Isabelle Fournier [Cambodge] ; Mauro Schechter [Brésil] ; Olivier Chassany [France]Source :
- Journal of acquired immune deficiency syndromes : (1999) [ 1525-4135 ] ; 2012.
Descripteurs français
- Pascal (Inist)
- Wicri :
- topic : Homme.
English descriptors
- KwdEn :
Abstract
Objectives: Health-related quality of life (HRQL) is an important outcome in HIV/AIDS infection and treatment. However, most existing HIV-HRQL instruments miss important issues (eg, sleeping problems, lipodystrophy). They were developed before highly active antiretroviral therapy (pre-HAART), and in a single language. We sought to develop a contemporary HIV-HRQL instrument (PROQOL-HIV) in multiple languages that accounts for HAART treatment and side effects. This article details the 3-stage content validation phase of PROQOL-HIV. Methods: In stage 1, we developed a conceptual model of HIV-HRQL and questionnaire item bank from thematic analysis of 152 patient interviews conducted simultaneously across 9 countries. In stage 2, pilot items were selected by an expert panel to form the pilot instrument. Stage 3 involved linguistic validation and harmonization of selected items to form an equivalent instrument in 9 target languages. Results: Analysis of 3375 pages of interview text revealed 11 underlying themes: general health perception, social relationships, emotions, energy/fatigue, sleep, cognitive functioning, physical and daily activity, coping, future, symptoms, and treatment. Seven issues new to HIV-HRQL measurement were subsumed by these themes: infection fears, future concerns, satisfaction with care, self-esteem problems, sleep problems, work disruption, and treatment issues. Of the 442 theme-related items banked, 70 items met the retention criteria and formed the pilot PROQOL-HIV instrument. Conclusions: HIV patients across 11 countries attributed a wide range of physical, mental, and social issues to their condition, many of which were not measured by existing HIV-HRQL instruments. The pilot PROQOL-HIV instrument captures these issues, is sensitive to sociocultural context, disease stage, and HAART.
Affiliations:
- Australie, Brésil, Cambodge, France, Inde, Sénégal, Thaïlande, États-Unis
- État de Rio de Janeiro, Île-de-France
- Paris, Rio de Janeiro
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Living With HIV/AIDS</title><author><name sortKey="Duracinsky, Martin" sort="Duracinsky, Martin" uniqKey="Duracinsky M" first="Martin" last="Duracinsky">Martin Duracinsky</name><affiliation wicri:level="3"><inist:fA14 i1="01"><s1>AP-HP, Saint-Louis Hospital, Department of Clinical Research (Patient-Reported Outcomes Unit)</s1><s2>Paris</s2><s3>FRA</s3><sZ>1 aut.</sZ><sZ>4 aut.</sZ><sZ>10 aut.</sZ></inist:fA14><country>France</country><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="02"><s1>AP-HP, Bicetre Hospital, Internal Medicine & Infectious Disease Department, Le Kremlin-Bicetre</s1><s3>FRA</s3><sZ>1 aut.</sZ></inist:fA14><country>France</country><wicri:noRegion>Le Kremlin-Bicetre</wicri:noRegion><wicri:noRegion>AP-HP, Bicetre Hospital, Internal Medicine & Infectious Disease Department, Le Kremlin-Bicetre</wicri:noRegion></affiliation></author><author><name sortKey="Herrmann, Susan" sort="Herrmann, Susan" uniqKey="Herrmann S" first="Susan" last="Herrmann">Susan Herrmann</name><affiliation wicri:level="1"><inist:fA14 i1="03"><s1>Institute for Immunology & Infectious Diseases, Murdoch University and Royal Perth Hospital</s1><s2>Perth</s2><s3>AUS</s3><sZ>2 aut.</sZ></inist:fA14><country>Australie</country><wicri:noRegion>Perth</wicri:noRegion></affiliation></author><author><name sortKey="Berzins, Baiba" sort="Berzins, Baiba" uniqKey="Berzins B" first="Baiba" last="Berzins">Baiba Berzins</name><affiliation wicri:level="1"><inist:fA14 i1="04"><s1>Center for Global Health, Division of Infectious Diseases, Northwestern University</s1><s2>Chicago, IL</s2><s3>USA</s3><sZ>3 aut.</sZ></inist:fA14><country>États-Unis</country><wicri:noRegion>Chicago, IL</wicri:noRegion></affiliation></author><author><name sortKey="Armstrong, Andrew R" sort="Armstrong, Andrew R" uniqKey="Armstrong A" first="Andrew R." last="Armstrong">Andrew R. Armstrong</name><affiliation wicri:level="3"><inist:fA14 i1="01"><s1>AP-HP, Saint-Louis Hospital, Department of Clinical Research (Patient-Reported Outcomes Unit)</s1><s2>Paris</s2><s3>FRA</s3><sZ>1 aut.</sZ><sZ>4 aut.</sZ><sZ>10 aut.</sZ></inist:fA14><country>France</country><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Kohli, Rewa" sort="Kohli, Rewa" uniqKey="Kohli R" first="Rewa" last="Kohli">Rewa Kohli</name><affiliation wicri:level="1"><inist:fA14 i1="05"><s1>National AIDS Research Institute</s1><s2>Pune</s2><s3>IND</s3><sZ>5 aut.</sZ></inist:fA14><country>Inde</country><wicri:noRegion>National AIDS Research Institute</wicri:noRegion></affiliation></author><author><name sortKey="Le Coeur, Sophie" sort="Le Coeur, Sophie" uniqKey="Le Coeur S" first="Sophie" last="Le Coeur">Sophie Le Coeur</name><affiliation wicri:level="3"><inist:fA14 i1="06"><s1>Institut de Recherche pour le Développernent, UMR CEPED (INED- IRD- Université Paris Descartes)</s1><s2>Paris</s2><s3>FRA</s3><sZ>6 aut.</sZ></inist:fA14><country>France</country><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="07"><s1>UMI 174, PHPT (IRD-Chiang Mai University-Harvard School of Public Health)</s1><s2>Chiang Mai</s2><s3>THA</s3><sZ>6 aut.</sZ></inist:fA14><country>Thaïlande</country><wicri:noRegion>Chiang Mai</wicri:noRegion></affiliation></author><author><name sortKey="Diouf, Assane" sort="Diouf, Assane" uniqKey="Diouf A" first="Assane" last="Diouf">Assane Diouf</name><affiliation wicri:level="1"><inist:fA14 i1="08"><s1>Department of Infectious diseases, Fann Hospital</s1><s2>Dakar</s2><s3>SEN</s3><sZ>7 aut.</sZ></inist:fA14><country>Sénégal</country><wicri:noRegion>Dakar</wicri:noRegion></affiliation></author><author><name sortKey="Fournier, Isabelle" sort="Fournier, Isabelle" uniqKey="Fournier I" first="Isabelle" last="Fournier">Isabelle Fournier</name><affiliation wicri:level="1"><inist:fA14 i1="09"><s1>Institut Pasteur</s1><s2>Phnom Penh</s2><s3>KHM</s3><sZ>8 aut.</sZ></inist:fA14><country>Cambodge</country><wicri:noRegion>Institut Pasteur</wicri:noRegion></affiliation></author><author><name sortKey="Schechter, Mauro" sort="Schechter, Mauro" uniqKey="Schechter M" first="Mauro" last="Schechter">Mauro Schechter</name><affiliation wicri:level="3"><inist:fA14 i1="10"><s1>Projeto Praça Onze, Hospital Escola Sao Francisco de Assis, Universidade Federal do Rio de Janeiro</s1><s2>Rio de Janeiro</s2><s3>BRA</s3><sZ>9 aut.</sZ></inist:fA14><country>Brésil</country><placeName><settlement type="city">Rio de Janeiro</settlement><region type="state">État de Rio de Janeiro</region></placeName></affiliation></author><author><name sortKey="Chassany, Olivier" sort="Chassany, Olivier" uniqKey="Chassany O" first="Olivier" last="Chassany">Olivier Chassany</name><affiliation wicri:level="3"><inist:fA14 i1="01"><s1>AP-HP, Saint-Louis Hospital, Department of Clinical Research (Patient-Reported Outcomes Unit)</s1><s2>Paris</s2><s3>FRA</s3><sZ>1 aut.</sZ><sZ>4 aut.</sZ><sZ>10 aut.</sZ></inist:fA14><country>France</country><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="3"><inist:fA14 i1="11"><s1>University Denis-Diderot</s1><s2>Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ></inist:fA14><country>France</country><placeName><region type="region">Île-de-France</region><region type="old region">Île-de-France</region><settlement type="city">Paris</settlement></placeName></affiliation></author></analytic><series><title level="j" type="main">Journal of acquired immune deficiency syndromes : (1999)</title><title level="j" type="abbreviated">J. acquir. immune defic. syndr. : (1999)</title><idno type="ISSN">1525-4135</idno><imprint><date when="2012">2012</date></imprint></series></biblStruct></sourceDesc><seriesStmt><title level="j" type="main">Journal of acquired immune deficiency syndromes : (1999)</title><title level="j" type="abbreviated">J. acquir. immune defic. syndr. : (1999)</title><idno type="ISSN">1525-4135</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>AIDS</term><term>Antiviral</term><term>Human</term><term>Human immunodeficiency virus</term></keywords><keywords scheme="Pascal" xml:lang="fr"><term>Virus immunodéficience humaine</term><term>Homme</term><term>SIDA</term><term>Antiviral</term><term>Protocole HAART</term></keywords><keywords scheme="Wicri" type="topic" xml:lang="fr"><term>Homme</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Objectives: Health-related quality of life (HRQL) is an important outcome in HIV/AIDS infection and treatment. However, most existing HIV-HRQL instruments miss important issues (eg, sleeping problems, lipodystrophy). They were developed before highly active antiretroviral therapy (pre-HAART), and in a single language. We sought to develop a contemporary HIV-HRQL instrument (PROQOL-HIV) in multiple languages that accounts for HAART treatment and side effects. This article details the 3-stage content validation phase of PROQOL-HIV. Methods: In stage 1, we developed a conceptual model of HIV-HRQL and questionnaire item bank from thematic analysis of 152 patient interviews conducted simultaneously across 9 countries. In stage 2, pilot items were selected by an expert panel to form the pilot instrument. Stage 3 involved linguistic validation and harmonization of selected items to form an equivalent instrument in 9 target languages. Results: Analysis of 3375 pages of interview text revealed 11 underlying themes: general health perception, social relationships, emotions, energy/fatigue, sleep, cognitive functioning, physical and daily activity, coping, future, symptoms, and treatment. Seven issues new to HIV-HRQL measurement were subsumed by these themes: infection fears, future concerns, satisfaction with care, self-esteem problems, sleep problems, work disruption, and treatment issues. Of the 442 theme-related items banked, 70 items met the retention criteria and formed the pilot PROQOL-HIV instrument. Conclusions: HIV patients across 11 countries attributed a wide range of physical, mental, and social issues to their condition, many of which were not measured by existing HIV-HRQL instruments. The pilot PROQOL-HIV instrument captures these issues, is sensitive to sociocultural context, disease stage, and HAART.</div></front></TEI><affiliations><list><country><li>Australie</li><li>Brésil</li><li>Cambodge</li><li>France</li><li>Inde</li><li>Sénégal</li><li>Thaïlande</li><li>États-Unis</li></country><region><li>État de Rio de Janeiro</li><li>Île-de-France</li></region><settlement><li>Paris</li><li>Rio de Janeiro</li></settlement></list><tree><country name="France"><region name="Île-de-France"><name sortKey="Duracinsky, Martin" sort="Duracinsky, Martin" uniqKey="Duracinsky M" first="Martin" last="Duracinsky">Martin Duracinsky</name></region><name sortKey="Armstrong, Andrew R" sort="Armstrong, Andrew R" uniqKey="Armstrong A" first="Andrew R." last="Armstrong">Andrew R. Armstrong</name><name sortKey="Chassany, Olivier" sort="Chassany, Olivier" uniqKey="Chassany O" first="Olivier" last="Chassany">Olivier Chassany</name><name sortKey="Chassany, Olivier" sort="Chassany, Olivier" uniqKey="Chassany O" first="Olivier" last="Chassany">Olivier Chassany</name><name sortKey="Duracinsky, Martin" sort="Duracinsky, Martin" uniqKey="Duracinsky M" first="Martin" last="Duracinsky">Martin Duracinsky</name><name sortKey="Le Coeur, Sophie" sort="Le Coeur, Sophie" uniqKey="Le Coeur S" first="Sophie" last="Le Coeur">Sophie Le Coeur</name></country><country name="Australie"><noRegion><name sortKey="Herrmann, Susan" sort="Herrmann, Susan" uniqKey="Herrmann S" first="Susan" last="Herrmann">Susan Herrmann</name></noRegion></country><country name="États-Unis"><noRegion><name sortKey="Berzins, Baiba" sort="Berzins, Baiba" uniqKey="Berzins B" first="Baiba" last="Berzins">Baiba Berzins</name></noRegion></country><country name="Inde"><noRegion><name sortKey="Kohli, Rewa" sort="Kohli, Rewa" uniqKey="Kohli R" first="Rewa" last="Kohli">Rewa Kohli</name></noRegion></country><country name="Thaïlande"><noRegion><name sortKey="Le Coeur, Sophie" sort="Le Coeur, Sophie" uniqKey="Le Coeur S" first="Sophie" last="Le Coeur">Sophie Le Coeur</name></noRegion></country><country name="Sénégal"><noRegion><name sortKey="Diouf, Assane" sort="Diouf, Assane" uniqKey="Diouf A" first="Assane" last="Diouf">Assane Diouf</name></noRegion></country><country name="Cambodge"><noRegion><name sortKey="Fournier, Isabelle" sort="Fournier, Isabelle" uniqKey="Fournier I" first="Isabelle" last="Fournier">Isabelle Fournier</name></noRegion></country><country name="Brésil"><region name="État de Rio de Janeiro"><name sortKey="Schechter, Mauro" sort="Schechter, Mauro" uniqKey="Schechter M" first="Mauro" last="Schechter">Mauro Schechter</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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