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1. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Adams, Claire E., Henry, Richard S., Fortuné, Catherine, Gottesman, Karen, Guillot, Geneviève, Hummers, Laura K., Lawrie-Jones, Amanda, Mayes, Maureen D., Richard, Michelle, Sauvé, Maureen, Assassi, Shervin, El-Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Gietzen, Amy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez-Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, André, Marc, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Ikic, Alena, Kafaja, Suzanne, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Díaz, Sheila Melchor, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Almazar, Esther Rodríguez, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa-Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Wojeck, Robyn K., Knisely, Mitchell R., Bailey, Donald E., Somers, Tamara J., Kwakkenbos, Linda, Carrier, Marie-Eve, Nielson, Warren R., Bartlett, Susan J., Malcarne, Vanessa L., Hudson, Marie, Levis, Brooke, Benedetti, Andrea, Mouthon, Luc, Thombs, Brett D., and Silva, Susan G.

Published
2023
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2. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐Davidson Resilience Scale in Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Published
2023
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3. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐Centered Intervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Published
2023
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4. Minimal Detectable Changes of the Health Assessment Questionnaire–Disability Index, Patient‐Reported Outcomes Measurement Information System‐29 Profile Version 2.0 Domains, and Patient Health Questionnaire‐8 in People With Systemic Sclerosis: A Scleroderma Patient‐Centered Intervention Network Cohort Cross‐Sectional Study

Author

Alkan, Afra, Carrier, Marie‐Eve, Henry, Richard S., Kwakkenbos, Linda, Bartlett, Susan J., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Hudson, Marie, Hummers, Laura K., Malcarne, Vanessa L., Mayes, Maureen D., Mouthon, Luc, Richard, Michelle, Wojeck, Robyn K., Worron‐Sauvé, Maureen, Benedetti, Andrea, Thombs, Brett D., Fortuné, Catherine, Adams, Claire Elizabeth, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Nielsen, Karen, Pope, Janet, Rannou, François, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Alric, Laurent, André, Marc, Beaslay, Floryan, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Blaise, Sophie, Bories, Eva, Bruns, Alessandra, Cacciatore, Carlotta, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Deltombe, Thylbert, Denton, Christopher P., Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge‐Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica K., Granel‐Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Eric, Hughes, Michael, Ikic, Alena, Jones, Niall, Kafaja, Suzanne, Khalidi, Nader, Lakin, Kimberly S., Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Mekinian, Arsene, Díaz, Sheila Melchor, Mourguet, Morgane, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Almazar, Esther Rodríguez, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert F., Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Research, Medical, Cook, Vanessa, Santo, Cassidy Dal, Santo, Tiffany Dal, D'Onofrio, Monica, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, and Provencher, Sabrina

Abstract

Systemic sclerosis (SSc) is a rare, chronic autoimmune disorder associated with disability, diminished physical function, fatigue, pain, and mental health concerns. We assessed minimal detectable changes (MDCs) of the Health Assessment Questionnaire–Disability Index (HAQ‐DI), Patient‐Reported Outcomes Measurement Information System‐29 Profile version 2.0 (PROMIS‐29v2.0) domains, and Patient Health Questionnaire (PHQ)‐8 in people with SSc. Scleroderma Patient‐Centered Intervention Network Cohort participants completed the HAQ‐DI, PROMIS‐29v2.0 domains, and PHQ‐8 at baseline assessments from April 2014 until August 2023. We estimated MDC95 (smallest change that can be detected with 95% certainty) and MDC90 (smallest change that can be detected with 90% certainty) with 95% confidence intervals (CIs) generated via the percentile bootstrapping method resampling 1,000 times. We compared MDC estimates by age, sex, and SSc subtype. A total of 2,571 participants were included. Most were female (n = 2,241; 87%), and 38% (n = 976) had diffuse SSc. Mean (±SD) age was 54.9 (±12.7) years and duration since onset of first non‐Raynaud phenomenon symptom was 10.8 (±8.7) years. MDC95 estimate was 0.41 points (95% CI 0.40–0.42) for the HAQ‐DI, between 4.88 points (95% CI 4.72–5.05) and 9.02 points (95% CI 8.80–9.23) for the seven PROMIS‐29v2.0 domains, and 5.16 points (95% CI 5.06–5.26) for the PHQ‐8. MDC95 estimates were not materially different across subgroups. MDC95 and MDC90 estimates were precise and similar across age, sex, and SSc subtype groups. HAQ‐DI MDC95 and MDC90 were substantially larger than previous estimates of HAQ‐DI minimal important difference from several small studies. Minimally important differences of all measures should be evaluated in large studies using anchor‐based methods.

Published
2024
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5. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

Author

Wojeck, Robyn K., primary, Knisely, Mitchell R., additional, Bailey, Donald E., additional, Somers, Tamara J., additional, Kwakkenbos, Linda, additional, Carrier, Marie-Eve, additional, Nielson, Warren R., additional, Bartlett, Susan J., additional, Malcarne, Vanessa L., additional, Hudson, Marie, additional, Levis, Brooke, additional, Benedetti, Andrea, additional, Mouthon, Luc, additional, Thombs, Brett D., additional, Silva, Susan G., additional, Adams, Claire E., additional, Henry, Richard S., additional, Fortuné, Catherine, additional, Gottesman, Karen, additional, Guillot, Geneviève, additional, Hummers, Laura K., additional, Lawrie-Jones, Amanda, additional, Mayes, Maureen D., additional, Richard, Michelle, additional, Sauvé, Maureen, additional, Assassi, Shervin, additional, El-Baalbaki, Ghassan, additional, Fligelstone, Kim, additional, Frech, Tracy, additional, Gietzen, Amy, additional, Harel, Daphna, additional, Hinchcliff, Monique, additional, Johnson, Sindhu R., additional, Larche, Maggie, additional, Leite, Catarina, additional, Nguyen, Christelle, additional, Nielsen, Karen, additional, Pope, Janet, additional, Rannou, François, additional, Rodriguez-Reyna, Tatiana Sofia, additional, Schouffoer, Anne A., additional, Suarez-Almazor, Maria E., additional, Agard, Christian, additional, Abdallah, Nassim Ait, additional, André, Marc, additional, Bernstein, Elana J., additional, Berthier, Sabine, additional, Bissonnette, Lyne, additional, Bruns, Alessandra, additional, Carreira, Patricia, additional, Casadevall, Marion, additional, Chaigne, Benjamin, additional, Chung, Lorinda, additional, Crichi, Benjamin, additional, Denton, Christopher, additional, Domsic, Robyn, additional, Dunne, James V., additional, Dunogue, Bertrand, additional, Fare, Regina, additional, Farge-Bancel, Dominique, additional, Fortin, Paul R., additional, Gordon, Jessica, additional, Granel-Rey, Brigitte, additional, Guffroy, Aurélien, additional, Gyger, Genevieve, additional, Hachulla, Eric, additional, Hoa, Sabrina, additional, Ikic, Alena, additional, Kafaja, Suzanne, additional, Khalidi, Nader, additional, Lakin, Kimberly, additional, Lambert, Marc, additional, Launay, David, additional, Lee, Yvonne C., additional, Maillard, Hélène, additional, Maltez, Nancy, additional, Manning, Joanne, additional, Marie, Isabelle, additional, Lopez, Maria Martin, additional, Martin, Thierry, additional, Masetto, Ariel, additional, Maurier, François, additional, Mekinian, Arsene, additional, Díaz, Sheila Melchor, additional, Nikpour, Mandana, additional, Olagne, Louis, additional, Poindron, Vincent, additional, Proudman, Susanna, additional, Régent, Alexis, additional, Rivière, Sébastien, additional, Robinson, David, additional, Almazar, Esther Rodríguez, additional, Roux, Sophie, additional, Smets, Perrine, additional, Sobanski, Vincent, additional, Spiera, Robert, additional, Steen, Virginia, additional, Sutton, Evelyn, additional, Thorne, Carter, additional, Varga, John, additional, Wilcox, Pearce, additional, Ayala, Mara Cañedo, additional, Cook, Vanessa, additional, Hu, Sophie, additional, Matthews, Bianca, additional, Nassar, Elsa-Lynn, additional, Neyer, Marieke Alexandra, additional, Nordlund, Julia, additional, and Provencher, Sabrina, additional

Published
2023
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6. Validity, Reliability, and Differential Item Functioning of English and French Versions of the 10‐Item Connor‐DavidsonResilience Scale in Systemic Sclerosis: A Scleroderma Patient‐CenteredIntervention Network Cohort Study

Author

Neyer, Marieke A., Henry, Richard S., Carrier, Marie‐Eve, Kwakkenbos, Linda, Wojeck, Robyn K., Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Lawrie‐Jones, Amanda, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Richard, Michelle, Worron‐Sauvé, Maureen, Harel, Daphna, Malcarne, Vanessa L., Bartlett, Susan J., Thombs, Brett D., Fortuné, Catherine, Hudson, Marie, Benedetti, Andrea, Hummers, Laura K., Adams, Claire Elizabeth, Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Matthews, Bianca, Nassar, Elsa‐Lynn, Nordlund, Julia, Provencher, Sabrina, Assassi, Shervin, El‐Baalbaki, Ghassan, Fligelstone, Kim, Frech, Tracy, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Nielsen, Karen, Pope, Janet, Rodriguez‐Reyna, Tatiana Sofia, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, André, Marc, Olagne, Louis, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Cacciatore, Carlotta, Crichi, Benjamin, Farge‐Bancel, Dominique, Carreira, Patricia, Fare, Regina, Lopez, Maria Martin, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Hoa, Sabrina, Jones, Niall, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Smets, Perrine, Steen, Virginia, Sutton, Evelyn, and Thorne, Carter

Abstract

Some individuals with systemic sclerosis (SSc) report positive mental health, despite severe disease manifestations, which may be associated with resilience, but no resilience measure has been validated in SSc. This study was undertaken to assess the validity, reliability, and differential item functioning (DIF) between English‐ and French‐language versions of the 10‐item Connor‐Davidson Resilience Scale (CD‐RISC‐10) in SSc. Eligible participants were enrolled in the Scleroderma Patient‐centered Intervention Network Cohort and completed the CD‐RISC‐10 between August 2022 and January 2023. We used confirmatory factor analysis (CFA) to evaluate the CD‐RISC‐10 factor structure and conducted DIF analysis across languages with Multiple Indicators Multiple Causes models. We tested convergent validity with another measure of resilience and measures of self‐esteem and depression and anxiety symptoms. We assessed internal consistency and test–retest reliability using Cronbach's alpha and intraclass correlation coefficient (ICC). A total of 962 participants were included in this analysis. CFA supported a single‐factor structure (Tucker–Lewis index = 0.99, comparative fit index = 0.99, root mean square error of approximation = 0.08 [90% confidence interval (90% CI) 0.07, 0.09]). We found no meaningful DIF. Internal consistency was high (α = 0.93 [95% CI 0.92, 0.94]), and we found that correlations with other measures of psychological functioning were moderate to large (|r| = 0.57–0.78) and confirmed study hypotheses. The scale showed good 1–2‐week test–retest reliability (ICC 0.80 [95% CI 0.75, 0.85]) in a subsample of 230 participants. The CD‐RISC‐10 is a valid and reliable measure of resilience in SSc, with score comparability across English and French versions.

Published
2023
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7. Evaluation of Measurement Properties and Differential Item Functioning in the English and French Versions of the University of California, Los Angeles, Loneliness Scale‐6: A Scleroderma Patient‐CenteredIntervention Network (SPIN) Study

Author

S. Rapoport, Chelsea, Choi, Alyssa K., Kwakkenbos, Linda, Carrier, Marie‐Eve, Henry, Richard S., Mouthon, Luc, Roesch, Scott C., Thombs, Brett D., Malcarne, Vanessa L., Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Sauvé, Maureen, Richard, Michelle, Welling, Joep, Varga, John, Adams, Claire E., Ayala, Mara Cañedo, Cook, Vanessa, Hu, Sophie, Nassar, Elsa‐Lynn, Neyer, Marieke Alexandra, Nordlund, Julia, Provencher, Sabrina, Bartlett, Susan J., Hudson, Marie, Benedetti, Andrea, Gottesman, Karen, Hummers, Laura K., Lawrie‐Jones, Amanda, Mayes, Maureen D., Assassi, Shervin, Nielson, Warren R., El‐Baalbaki, Ghassan, Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu R., Larche, Maggie, Khalidi, Nader, Leite, Catarina, Nguyen, Christelle, Rannou, François, Pope, Janet, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez‐Almazor, Maria E., Agard, Christian, Abdallah, Nassim Ait, Crichi, Benjamin, Farge‐Bancel, Dominique, André, Marc, Olagne, Louis, Smets, Perrine, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Masetto, Ariel, Roux, Sophie, Carreira, Patricia, Fare, Regina, Martin, Maria, Díaz, Sheila Melchor, Almazar, Esther Rodríguez, Casadevall, Marion, Chaigne, Benjamin, Dunogue, Bertrand, Régent, Alexis, Chung, Lorinda, Denton, Christopher, Domsic, Robyn, Dunne, James V., Wilcox, Pearce, Fortin, Paul R., Ikic, Alena, Gordon, Jessica, Lakin, Kimberly, Spiera, Robert, Granel‐Rey, Brigitte, Guffroy, Aurélien, Martin, Thierry, Poindron, Vincent, Gyger, Genevieve, Hachulla, Eric, Lambert, Marc, Launay, David, Maillard, Hélène, Sobanski, Vincent, Hoa, Sabrina, Jones, Niall, Kafaja, Suzanne, Lee, Yvonne C., Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Maurier, François, Mekinian, Arsene, Rivière, Sébastien, Nikpour, Mandana, Proudman, Susanna, Robinson, David, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, and Varga, John

Abstract

Loneliness has been associated with poorer health‐related quality of life but has not been studied in patients with systemic sclerosis (SSc). The current study was undertaken to examine and compare the psychometric properties of the English and French versions of the University of California, Los Angeles, Loneliness Scale‐6 (ULS‐6) in patients with SSc during the COVID‐19 pandemic. This study used baseline cross‐sectional data from 775 adults enrolled in the Scleroderma Patient‐Centered Intervention Network (SPIN) COVID‐19 Cohort. Reliability and validity of ULS‐6 scores overall and between languages were evaluated using confirmatory factor analysis (CFA), differential item functioning (DIF) through the multiple‐indicator multiple‐cause (MIMIC) model, omega/alpha calculation, and correlations of hypothesized convergent relationships. CFA for the total sample supported the single‐factor structure (comparative fit index [CFI] 0.96, standardized root mean residual [SRMR] 0.03), and all standardized factor loadings for items were large (0.60–0.86). The overall MIMIC model with language as a covariate fit well (CFI 0.94, SRMR 0.04, root mean square error of approximation 0.11). Statistically significant DIF was found for 3 items across language (βitem2= 0.14, P< 0.001; βitem4= –0.07, P= 0.01; βitem6= 0.13, P< 0.001), but these small differences were without practical measurement implications. Analyses demonstrated high internal consistency with no language‐based convergent validity differences. Analyses demonstrated evidence of acceptable reliability and validity of ULS‐6 scores in English‐ and French‐speaking adults with SSc. DIF analysis supported use of the ULS‐6 to examine comparative experiences of loneliness without adjusting for language.

Published
2023
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