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3. CONQUER Scleroderma: association of gastrointestinal tract symptoms in early disease with resource utilization.

Author

Luebker, Sarah, Frech, Tracy, Assassi, Shervin, Skaug, Brian, Gordon, Jessica, Lakin, Kimberly, Bernstein, Elana, Luo, Yiming, Steen, Virginia, Shah, Ami, Hummers, Laura, Richardson, Carrie, Moore, Duncan, Khanna, Dinesh, Castelino, Flavia, Chung, Lorinda, Kapoor, Puneet, Hant, Faye, Shanmugam, Victoria, VanBuren, John, Alvey, Jessica, Harding, Monica, Shah, Ankoor, Makol, Ashima, Lebiedz-Odrobina, Dorota, Thomas, Julie, Volkmann, Elizabeth, Molitor, Jerry, and Sandorfi, Nora

Subjects
SSc, gastrointestinal tract, health outcomes, health status, Humans, Gastrointestinal Diseases, Surveys and Questionnaires, Self Report, Registries, Scleroderma, Systemic
Abstract

OBJECTIVES: SSc is associated with increased health-care resource utilization and economic burden. The Collaborative National Quality and Efficacy Registry (CONQUER) is a US-based collaborative that collects longitudinal follow-up data on SSc patients with

Published
2023

4. 2022 American College of Rheumatology Guideline for Vaccinations in Patients With Rheumatic and Musculoskeletal Diseases

Author

Bass, Anne R, Chakravarty, Eliza, Akl, Elie A, Bingham, Clifton O, Calabrese, Leonard, Cappelli, Laura C, Johnson, Sindhu R, Imundo, Lisa F, Winthrop, Kevin L, Arasaratnam, Reuben J, Baden, Lindsey R, Berard, Roberta, Bridges, S Louis, Cheah, Jonathan TL, Curtis, Jeffrey R, Ferguson, Polly J, Hakkarinen, Ida, Onel, Karen B, Schultz, Grayson, Sivaraman, Vidya, Smith, Benjamin J, Sparks, Jeffrey A, Vogel, Tiphanie P, Williams, Eleanor Anderson, Calabrese, Cassandra, Cunha, Joanne S, Fontanarosa, Joann, Gillispie‐Taylor, Miriah C, Gkrouzman, Elena, Iyer, Priyanka, Lakin, Kimberly S, Legge, Alexandra, Lo, Mindy S, Lockwood, Megan M, Sadun, Rebecca E, Singh, Namrata, Sullivan, Nancy, Tam, Herman, Turgunbaev, Marat, Turner, Amy S, and Reston, James

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Autoimmune Disease, Immunization, Prevention, Vaccine Related, 3.4 Vaccines, Prevention of disease and conditions, and promotion of well-being, Good Health and Well Being, Child, Humans, United States, Rheumatology, Antirheumatic Agents, Musculoskeletal Diseases, Vaccination
Abstract

ObjectiveTo provide evidence-based recommendations on the use of vaccinations in children and adults with rheumatic and musculoskeletal diseases (RMDs).MethodsThis guideline follows American College of Rheumatology (ACR) policy guiding management of conflicts of interest and disclosures and the ACR guideline development process, which includes the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology. It also adheres to the Appraisal of Guidelines for Research and Evaluation (AGREE) criteria. A core leadership team consisting of adult and pediatric rheumatologists and a guideline methodologist drafted clinical population, intervention, comparator, outcomes (PICO) questions. A review team performed a systematic literature review for the PICO questions, graded the quality of evidence, and produced an evidence report. An expert Voting Panel reviewed the evidence and formulated recommendations. The panel included adult and pediatric rheumatology providers, infectious diseases specialists, and patient representatives. Consensus required ≥70% agreement on both the direction and strength of each recommendation.ResultsThis guideline includes expanded indications for some vaccines in patients with RMDs, as well as guidance on whether to hold immunosuppressive medications or delay vaccination to maximize vaccine immunogenicity and efficacy. Safe approaches to the use of live attenuated vaccines in patients taking immunosuppressive medications are also addressed. Most recommendations are conditional and had low quality of supporting evidence.ConclusionApplication of these recommendations should consider patients' individual risk for vaccine-preventable illness and for disease flares, particularly if immunosuppressive medications are held for vaccination. Shared decision-making with patients is encouraged in clinical settings.

Published
2023

5. The association of outdoor temperature and self-reported Raynaud's phenomenon severity among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study

Author

Fortuné, Catherine, Adams, Claire E., Henry, Richard S., 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 Sofía, Shouffoer, 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, Desroche, Tannvir, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gauzère, Loraine, Gerber, Anne, Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Geneviève, Hachulla, Erica, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly, Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olgane, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Varga, John, Wilcox, Pearce, Cañedo Ayala, Mara, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'Onofrio, Monica, Hu, Sophie, Neyer, Marieke Alexandra, Provencher, Sabrina, Virgili-Gervais, Gabrielle, Matthews, Bianca, Nassar, Elsa-Lynn, Carrier, Marie-Eve, Kwakkenbos, Linda, Pauling, John D, Bartlett, Susan J, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Hummers, Laura K, Lawrie-Jones, Amanda, Malcarne, Vanessa L, Mayes, Maureen D, Richard, Michelle, Sauvé, Maureen, Wojeck, Robyn K, Mouthon, Luc, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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10. 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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11. 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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12. 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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14. 2022 American College of Rheumatology Guideline for Vaccinations in Patients With Rheumatic and Musculoskeletal Diseases

Author

Bass, Anne R., Chakravarty, Eliza, Akl, Elie A., Bingham, Clifton O., Calabrese, Leonard, Cappelli, Laura C., Johnson, Sindhu R., Imundo, Lisa F., Winthrop, Kevin L., Arasaratnam, Reuben J., Baden, Lindsey R., Berard, Roberta, Bridges, S. Louis, Jr., Cheah, Jonathan T. L., Curtis, Jeffrey R., Ferguson, Polly J., Hakkarinen, Ida, Onel, Karen B., Schultz, Grayson, Sivaraman, Vidya, Smith, Benjamin J., Sparks, Jeffrey A., Vogel, Tiphanie P., Williams, Eleanor Anderson, Calabrese, Cassandra, Cunha, Joanne S., Fontanarosa, Joann, Gillispie‐Taylor, Miriah C., Gkrouzman, Elena, Iyer, Priyanka, Lakin, Kimberly S., Legge, Alexandra, Lo, Mindy S., Lockwood, Megan M., Sadun, Rebecca E., Singh, Namrata, Sullivan, Nancy, Tam, Herman, Turgunbaev, Marat, Turner, Amy S., and Reston, James

Published
2023
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15. 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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16. Understanding the barriers to integrating maternal and mental health at primary health care in Vietnam

Author

Trang, Do Thi Hanh, primary, Ha, Bui Thi Thu, additional, Vui, Le Thi, additional, Chi, Nguyen Thai Quynh, additional, Thi, Le Minh, additional, Duong, Doan Thi Thuy, additional, Hung, Dang The, additional, de Chavez, Anna Cronin, additional, Manzano, Ana, additional, Lakin, Kimberly, additional, Kane, Sumit, additional, and Mirzoev, Tolib, additional

Published
2024
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17. Peoples’ Expectations of Responsive Health Systems: Insights from Maternity Care in Vietnam

Author

Lakin, Kimberly Joyce and Lakin, Kimberly Joyce

Abstract

Health systems responsiveness is the “health system’s ability to meet the population’s legitimate expectations”. Despite growing recognition of the importance of responsiveness in recent years, several theoretical and empirical gaps remain. Theoretically, there is limited explicit engagement with and understanding of what corresponds to a legitimate expectation of care. Moreover, current analytical frameworks of responsiveness and resultant empirical work do not yet sufficiently consider the broader contextual conditions which define what people expect from their health systems. Such a consideration is particularly important given the political, economic, and health system transitions and changes experienced by low- and middle-income countries (LMICs) in recent decades. Vietnam has experienced rapid economic growth in the last two decades, spurred on by the Doi Moi reforms. Within the health system, the Doi Moi reforms saw the official recognition of the private sector, as well as the covert privatisation of the public health system. These social, economic, and health system transformations are insufficiently reflected in the current scholarly literature on women’s encounters with maternity care. In light of the social, economic, and health system evolutions occurring in post-Doi Moi Vietnam, this qualitative study aimed to unpack women’s expectations and experiences of their health system interactions during pregnancy and childbirth. Drawing on in-depth interviews with 28 pregnant and postpartum women in rural Bac Giang province, this study reveals how expectations are powerful determinants of women’s care-seeking choices and decisions, motivating their actions and interactions with the Vietnamese health system during pregnancy and childbirth. Drawing on key theoretical literature on the concepts of expectations and legitimacy, it critically and comprehensively examines women’s legitimate expectations of the Vietnamese health system. By adopting a translocational l

Published
2024

18. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases

Author

Johnson, Sindhu R., Bernstein, Elana J., Bolster, Marcy B., Chung, Jonathan H., Danoff, Sonye K., George, Michael D., Khanna, Dinesh, Guyatt, Gordon, Mirza, Reza D., Aggarwal, Rohit, Allen, Aberdeen, Assassi, Shervin, Buckley, Lenore, Chami, Hassan A., Corwin, Douglas S., Dellaripa, Paul F., Domsic, Robyn T., Doyle, Tracy J., Falardeau, Catherine Marie, Frech, Tracy M., Gibbons, Fiona K., Hinchcliff, Monique, Johnson, Cheilonda, Kanne, Jeffrey P., Kim, John S., Lim, Sian Yik, Matson, Scott, McMahan, Zsuzsanna H., Merck, Samantha J., Nesbitt, Kiana, Scholand, Mary Beth, Shapiro, Lee, Sharkey, Christine D., Summer, Ross, Varga, John, Warrier, Anil, Agarwal, Sandeep K., Antin‐Ozerkis, Danielle, Bemiss, Bradford, Chowdhary, Vaidehi, Dematte D'Amico, Jane E., Hallowell, Robert, Hinze, Alicia M., Injean, Patil A., Jiwrajka, Nikhil, Joerns, Elena K., Lee, Joyce S., Makol, Ashima, McDermott, Gregory C., Natalini, Jake G., Oldham, Justin M., Saygin, Didem, Lakin, Kimberly Showalter, Singh, Namrata, Solomon, Joshua J., Sparks, Jeffrey A., Turgunbaev, Marat, Vaseer, Samera, Turner, Amy, Uhl, Stacey, and Ivlev, Ilya

Abstract

We provide evidence‐based recommendations regarding screening for interstitial lung disease (ILD) and the monitoring for ILD progression in people with systemic autoimmune rheumatic diseases (SARDs), specifically rheumatoid arthritis, systemic sclerosis, idiopathic inflammatory myopathies, mixed connective tissue disease, and Sjögren disease. We developed clinically relevant population, intervention, comparator, and outcomes questions related to screening and monitoring for ILD in patients with SARDs. A systematic literature review was performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A Voting Panel of interdisciplinary clinician experts and patients achieved consensus on the direction and strength of each recommendation. Fifteen recommendations were developed. For screening people with these SARDs at risk for ILD, we conditionally recommend pulmonary function tests (PFTs) and high‐resolution computed tomography of the chest (HRCT chest); conditionally recommend against screening with 6‐minute walk test distance (6MWD), chest radiography, ambulatory desaturation testing, or bronchoscopy; and strongly recommend againstscreening with surgical lung biopsy. We conditionally recommend monitoring ILD with PFTs, HRCT chest, and ambulatory desaturation testing and conditionally recommend againstmonitoring with 6MWD, chest radiography, or bronchoscopy. We provide guidance on ILD risk factors and suggestions on frequency of testing to evaluate for the development of ILD in people with SARDs. This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the screening and monitoring of ILD in people with SARDs.

Published
2024
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19. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases

Author

Johnson, Sindhu R., Bernstein, Elana J., Bolster, Marcy B., Chung, Jonathan H., Danoff, Sonye K., George, Michael D., Khanna, Dinesh, Guyatt, Gordon, Mirza, Reza D., Aggarwal, Rohit, Allen, Aberdeen, Assassi, Shervin, Buckley, Lenore, Chami, Hassan A., Corwin, Douglas S., Dellaripa, Paul F., Domsic, Robyn T., Doyle, Tracy J., Falardeau, Catherine Marie, Frech, Tracy M., Gibbons, Fiona K., Hinchcliff, Monique, Johnson, Cheilonda, Kanne, Jeffrey P., Kim, John S., Lim, Sian Yik, Matson, Scott, McMahan, Zsuzsanna H., Merck, Samantha J., Nesbitt, Kiana, Scholand, Mary Beth, Shapiro, Lee, Sharkey, Christine D., Summer, Ross, Varga, John, Warrier, Anil, Agarwal, Sandeep K., Antin‐Ozerkis, Danielle, Bemiss, Bradford, Chowdhary, Vaidehi, Dematte D'Amico, Jane E., Hallowell, Robert, Hinze, Alicia M., Injean, Patil A., Jiwrajka, Nikhil, Joerns, Elena K., Lee, Joyce S., Makol, Ashima, McDermott, Gregory C., Natalini, Jake G., Oldham, Justin M., Saygin, Didem, Lakin, Kimberly Showalter, Singh, Namrata, Solomon, Joshua J., Sparks, Jeffrey A., Turgunbaev, Marat, Vaseer, Samera, Turner, Amy, Uhl, Stacey, and Ivlev, Ilya

Abstract

We provide evidence‐based recommendations regarding the treatment of interstitial lung disease (ILD) in adults with systemic autoimmune rheumatic diseases (SARDs). We developed clinically relevant population, intervention, comparator, and outcomes questions. A systematic literature review was then performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A panel of clinicians and patients reached consensus on the direction and strength of the recommendations. Thirty‐five recommendations were generated (including two strong recommendations) for first‐line SARD‐ILD treatment, treatment of SARD‐ILD progression despite first‐line ILD therapy, and treatment of rapidly progressive ILD. The strong recommendations were against using glucocorticoids in systemic sclerosis–ILD as a first‐line ILD therapy and after ILD progression. Otherwise, glucocorticoids are conditionally recommended for first‐line ILD treatment in all other SARDs. This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the treatment of ILD in people with SARDs.

Published
2024
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21. Experiences of telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study

Author

Adams, Claire E., Gottesman, Karen, Hudson, Marie, Hummers, Laura K., Lawrie-Jones, Amanda, Malcarne, Vanessa L., Mayes, Maureen D., Richard, Michelle, Wojeck, Robyn K., 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, 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, Hoa, Sabrina, Hughes, Michael, Ikic, Alena, Khalidi, Nader, Lakin, Kimberly S., Lambert, Marc, Launay, David, Lee, Yvonne C., Legendre, Paul, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin Lopez, Maria, Martin, Thierry, Masetto, Ariel, Mekinian, Arsène, Melchor Díaz, Sheila, Mourguet, Morgane, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Pugnet, Grégory, Raffray, Loïc, Régent, Alexis, Renou, Frederic, Rivière, Sébastien, Robinson, David, Rodríguez Almazar, Esther, Roux, Sophie, Smets, Perrine, Sobanski, Vincent, Spiera, Robert F., Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Vagner, Damien, Wilcox, Pearce, Ayala, Mara Cañedo, Cook, Vanessa, Dal Santo, Cassidy, Dal Santo, Tiffany, D'onofrio, Monica, Neyer, Marieke Alexandra, Nassar, Elsa-Lynn, Virgili-Gervais, Gabrielle, Carrier, Marie-Eve, Kwakkenbos, Linda, Henry, Richard S, Hu, Sophie, Provencher, Sabrina, Golberg, Meira, Bartlett, Susan J, Mouthon, Luc, Patten, Scott B, Varga, John, Benedetti, Andrea, and Thombs, Brett D

Published
2024
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22. 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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24. Regulation of plasmacytoid dendritic cells byER stress-mediated metabolic responses

Author

Chaudhary, Vidyanath, primary, Ah Kioon, Marie Dominique, additional, Hwang, Sung-Min, additional, Mishra, Bikash, additional, Lakin, Kimberly, additional, Kirou, Kyriakos, additional, Zhang-Sun, Jeffrey, additional, Wiseman, Luke, additional, Spiera, Robert, additional, Crow, Mary K., additional, Gordon, Jessica, additional, Cubillos-Ruiz, Juan R, additional, and Barrat, Franck J, additional

Published
2023
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25. Using the WHO Self-Reporting Questionnaire-20 (SRQ-20) to Detect Symptoms of Common Mental Disorders among Pregnant Women in Vietnam: a Validation Study

Author

Do,Trang Thi Hanh, Bui,Quyen Thi Tu, Ha,Bui Thi Thu, Le,Thi Minh, Le,Vui Thi, Nguyen,Quynh-Chi Thai, Lakin,Kimberly Joyce, Dang,Tung Thanh, Bui,Loi Van, Le,Thien Cong, Tran,An Thi Ha, Pham,Hien Thi Thu, Nguyen,Tuan Van, Do,Trang Thi Hanh, Bui,Quyen Thi Tu, Ha,Bui Thi Thu, Le,Thi Minh, Le,Vui Thi, Nguyen,Quynh-Chi Thai, Lakin,Kimberly Joyce, Dang,Tung Thanh, Bui,Loi Van, Le,Thien Cong, Tran,An Thi Ha, Pham,Hien Thi Thu, and Nguyen,Tuan Van

Abstract

Trang Thi Hanh Do,1 Quyen Thi Tu Bui,2 Bui Thi Thu Ha,3 Thi Minh Le,3 Vui Thi Le,3 Quynh-Chi Thai Nguyen,3 Kimberly Joyce Lakin,4 Tung Thanh Dang,5 Loi Van Bui,5 Thien Cong Le,5 An Thi Ha Tran,5 Hien Thi Thu Pham,5 Tuan Van Nguyen5 1Faculty of Environmental and Occupational Health, Hanoi University of Public Health, Hanoi, Vietnam; 2Faculty and Fundamental Sciences, Hanoi University of Public Health, Hanoi, Vietnam; 3Faculty of Social and Behavioral Sciences, Hanoi University of Public Health, Hanoi, Vietnam; 4Nossal Institute for Global Health, Melbourne School of Population and Global Health, Melbourne, Victoria, Australia; 5The National Institute of Mental Health, Bach Mai Hospital, Hanoi, VietnamCorrespondence: Quyen Thi Tu Bui, Department of Biostatistics, Faculty of Fundamental Sciences, Hanoi University of Public Health, 1A Duc Thang Street, Bac Tu Liem District, Hanoi, Vietnam, Tel +84 912 225 245, Fax +84 24 6266 2385, Email btq@huph.edu.vnPurpose: Detection of antenatal common mental disorders in low-resource settings like Vietnam is important and requires a reliable, valid and practical screening tool. Currently, there is no such tool validated for use among pregnant women in Vietnam. This study aims to assess the validity of the Vietnamese version of the 20-item Self Reporting Questionnaire (SRQ-20) by evaluating its reliability, factorial structure, and performance in detecting common mental disorder (CMD) symptoms, thereby identifying the optimum cut-off score for CMD screening among pregnant women in Vietnam.Participants and Methods: A total of 210 pregnant women from four rural communes participated in a face-to-face interview using the Vietnamese version of the SRQ-20, followed by a clinical diagnostic interview based on ICD-10 diagnostic criteria of CMDs. The reliability of the SRQ-20 was assessed by calculating the scale’s Cronbach’s alpha to measure internal consistency. Factor analyses were undertaken to examine the factor structure of the i

Published
2023

26. Using the WHO Self-Reporting Questionnaire-20 (SRQ-20) to Detect Symptoms of Common Mental Disorders among Pregnant Women in Vietnam: a Validation Study

Author

Do, Trang Thi Hanh, primary, Bui, Quyen Thi Tu, additional, Ha, Bui Thi Thu, additional, Le, Thi Minh, additional, Le, Vui Thi, additional, Nguyen, Quynh-Chi Thai, additional, Lakin, Kimberly Joyce, additional, Dang, Tung Thanh, additional, Bui, Loi Van, additional, Le, Thien Cong, additional, Tran, An Thi Ha, additional, Pham, Hien Thi Thu, additional, and Nguyen, Tuan Van, additional

Published
2023
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29. 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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30. Chronic activation of pDCs in autoimmunity is linked to dysregulated ER stress and metabolic responses

Author

Chaudhary, Vidyanath, primary, Ah Kioon, Marie Dominique, additional, Hwang, Sung-Min, additional, Mishra, Bikash, additional, Lakin, Kimberly, additional, Kirou, Kyriakos A., additional, Zhang-Sun, Jeffrey, additional, Wiseman, R. Luke, additional, Spiera, Robert F., additional, Crow, Mary K., additional, Gordon, Jessica K., additional, Cubillos-Ruiz, Juan R., additional, and Barrat, Franck J., additional

Published
2022
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31. 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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33. Patient perspectives on educational needs in scleroderma-interstitial lung disease

Author

Savvaides, Tina M, Di Vitantonio, Thomas A, Edgar, Armani, O’Beirne, Ronan, Krishnan, Jamuna K, Kaner, Robert J, Podolanczuk, Anna J, Spiera, Robert, Gordon, Jessica, Safford, Monika M, Lakin, Kimberly S, and Aronson, Kerri I

Abstract

Background: Systemic sclerosis is a chronic and rare connective tissue disease with multiorgan effects, including interstitial lung disease (ILD). Navigating systemic sclerosis-interstitial lung disease presents a challenge for patients due to the gaps in patient education, which can impact patient health and quality of life. This study utilized the nominal group technique to identify priority knowledge gaps among patients with systemic sclerosis-interstitial lung disease and inform future educational interventions and research.Methods: We conducted four structured group sessions using the nominal group technique. Patients with systemic sclerosis-interstitial lung disease were presented with two questions that aimed to identify knowledge gaps. Following participant ranking, investigators performed a thematic analysis of the patients’ responses to categorize the generated knowledge gaps.Results: Twenty-one patients were interviewed and ranked the top three themes for the first question (What questions about your scleroderma-lung disease that you have keep you awake at night?), based on total points, as: (1) Understanding progression, its impacts on the body, and managing health changes (39.7%); (2) anticipating future symptoms and implementing strategies for management and coping (19.8%); and (3) employing and understanding non-pharmacological interventions and self-management strategies (17.5%). The top three themes for the second question (What information do you want about your scleroderma-lung disease that you cannot find?)ranked by total points were: (1) understanding progression, its impacts on the body, and managing health changes (41.3%); (2) navigating health system barriers (16.7%); and (3) research efforts toward treating scleroderma (10.3%).Conclusions: Our study underscores the importance of understanding the educational needs of patients with systemic sclerosis-interstitial lung disease. Patient responses emphasize the need to comprehensively address concerns about disease management, coping with impacts on social life, and navigating the healthcare system. By addressing these multifaceted concerns, we can design and implement patient-centered education to empower patients through increased support.

Published
2025
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34. Altered X-chromosome inactivation of the TLR7/8 locus and heterogeneity of pDCs in systemic sclerosis

Author

Du, Yong, Faz-Lopez, Bérénice, Ah Kioon, Marie Dominique, Cenac, Claire, Pierides, Michael, Lakin, Kimberly S., Spiera, Robert F., Chaumeil, Julie, Truchetet, Marie-Elise, Gordon, Jessica K., Guéry, Jean-Charles, and Barrat, Franck J.

Abstract

Systemic sclerosis (SSc) is an autoimmune disease that has a strong female predominance. Both the X-linked TLR7 and TLR8 can induce type I IFN (IFN-I) by plasmacytoid DCs (pDCs), which can promote fibrosis. We identified five subclusters of pDCs, including ISGhigh clusters that were over-represented in SSc patients. We observed that both TLR7 and TLR8 genes escape from X chromosome inactivation (XCI) at higher frequency in pDCs of SSc patients, which was associated with changes in TLR7 protein profile. Combined DNA/RNA FISH analysis revealed that the TLR7/8 locus is preferentially located outside of the inactive X (Xi) territory when TLR7 is expressed, suggesting that higher-order loop formation is linked to TLR7/8 expression from the Xi. Furthermore, the expression levels of XIST and the transcriptional repressor SPEN were reduced in SSc pDCs. Hence, our data revealed the heterogeneity of pDCs in SSc and suggested that altered XCI at the TLR7/8 locus may contribute to the chronic IFN-I activity of pDCs in female SSc patients.

Published
2025
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35. Childbearing Women’s Experiences of and Interactions With the Health System in Vietnam: A Critical Interpretive Synthesis

Author

Lakin, Kimberly, Huong, Nguyen Thu, and Kane, Sumit

Abstract

Scholars have long argued that the care experience is shaped by context, and by evolutions in this context. Using Vietnam as a case, we critically interrogate the literature on women’s experiences with maternity care to unpack whether and if it engages with the major social, economic, and health system impacts of the Doi Moi reforms in Vietnam and with what consequences for equity. We conducted a critical interpretive synthesis of this literature in light of the social, economic, and health system transformations driven by the Doi Moi reforms. We offer three critiques: (1) an overwhelming focus on public maternity care provision in rural/mountainous regions of Vietnam, (2) a narrow focus on women’s ethnic identity, and (3) a misplaced preoccupation with women’s limited autonomy and agency. We argue that future research needs to consider the impact of Vietnam’s shift towards market-oriented care provision, and the broader societal and health system changes impacting both rural and urban areas, as well as ethnic minority and Kinh majority populations.

Published
2024
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36. Childbearing Women's Experiences of and Interactions With the Health System in Vietnam: A Critical Interpretive Synthesis.

Author

Lakin K, Huong NT, and Kane S

Abstract

Scholars have long argued that the care experience is shaped by context, and by evolutions in this context. Using Vietnam as a case, we critically interrogate the literature on women's experiences with maternity care to unpack whether and if it engages with the major social, economic, and health system impacts of the Doi Moi reforms in Vietnam and with what consequences for equity. We conducted a critical interpretive synthesis of this literature in light of the social, economic, and health system transformations driven by the Doi Moi reforms. We offer three critiques: (1) an overwhelming focus on public maternity care provision in rural/mountainous regions of Vietnam, (2) a narrow focus on women's ethnic identity, and (3) a misplaced preoccupation with women's limited autonomy and agency. We argue that future research needs to consider the impact of Vietnam's shift towards market-oriented care provision, and the broader societal and health system changes impacting both rural and urban areas, as well as ethnic minority and Kinh majority populations., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Published
2024
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37. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases.

Author

Johnson SR, Bernstein EJ, Bolster MB, Chung JH, Danoff SK, George MD, Khanna D, Guyatt G, Mirza RD, Aggarwal R, Allen A Jr, Assassi S, Buckley L, Chami HA, Corwin DS, Dellaripa PF, Domsic RT, Doyle TJ, Falardeau CM, Frech TM, Gibbons FK, Hinchcliff M, Johnson C, Kanne JP, Kim JS, Lim SY, Matson S, McMahan ZH, Merck SJ, Nesbitt K, Scholand MB, Shapiro L, Sharkey CD, Summer R, Varga J, Warrier A, Agarwal SK, Antin-Ozerkis D, Bemiss B, Chowdhary V, Dematte D'Amico JE, Hallowell R, Hinze AM, Injean PA, Jiwrajka N, Joerns EK, Lee JS, Makol A, McDermott GC, Natalini JG, Oldham JM, Saygin D, Lakin KS, Singh N, Solomon JJ, Sparks JA, Turgunbaev M, Vaseer S, Turner A, Uhl S, and Ivlev I

Subjects
Humans, Scleroderma, Systemic complications, Scleroderma, Systemic diagnosis, Respiratory Function Tests, Tomography, X-Ray Computed, Arthritis, Rheumatoid complications, Societies, Medical, United States, Mass Screening methods, Mass Screening standards, Mixed Connective Tissue Disease complications, Mixed Connective Tissue Disease diagnosis, Myositis diagnosis, Myositis complications, Sjogren's Syndrome diagnosis, Sjogren's Syndrome complications, Walk Test, Lung Diseases, Interstitial diagnosis, Rheumatic Diseases complications, Rheumatic Diseases diagnosis, Autoimmune Diseases diagnosis, Autoimmune Diseases complications, Rheumatology standards
Abstract

Objective: We provide evidence-based recommendations regarding screening for interstitial lung disease (ILD) and the monitoring for ILD progression in people with systemic autoimmune rheumatic diseases (SARDs), specifically rheumatoid arthritis, systemic sclerosis, idiopathic inflammatory myopathies, mixed connective tissue disease, and Sjögren disease., Methods: We developed clinically relevant population, intervention, comparator, and outcomes questions related to screening and monitoring for ILD in patients with SARDs. A systematic literature review was performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A Voting Panel of interdisciplinary clinician experts and patients achieved consensus on the direction and strength of each recommendation., Results: Fifteen recommendations were developed. For screening people with these SARDs at risk for ILD, we conditionally recommend pulmonary function tests (PFTs) and high-resolution computed tomography of the chest (HRCT chest); conditionally recommend against screening with 6-minute walk test distance (6MWD), chest radiography, ambulatory desaturation testing, or bronchoscopy; and strongly recommend against screening with surgical lung biopsy. We conditionally recommend monitoring ILD with PFTs, HRCT chest, and ambulatory desaturation testing and conditionally recommend against monitoring with 6MWD, chest radiography, or bronchoscopy. We provide guidance on ILD risk factors and suggestions on frequency of testing to evaluate for the development of ILD in people with SARDs., Conclusion: This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the screening and monitoring of ILD in people with SARDs., (© 2024 American College of Rheumatology.)

Published
2024
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38. 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases.

Author

Johnson SR, Bernstein EJ, Bolster MB, Chung JH, Danoff SK, George MD, Khanna D, Guyatt G, Mirza RD, Aggarwal R, Allen A Jr, Assassi S, Buckley L, Chami HA, Corwin DS, Dellaripa PF, Domsic RT, Doyle TJ, Falardeau CM, Frech TM, Gibbons FK, Hinchcliff M, Johnson C, Kanne JP, Kim JS, Lim SY, Matson S, McMahan ZH, Merck SJ, Nesbitt K, Scholand MB, Shapiro L, Sharkey CD, Summer R, Varga J, Warrier A, Agarwal SK, Antin-Ozerkis D, Bemiss B, Chowdhary V, Dematte D'Amico JE, Hallowell R, Hinze AM, Injean PA, Jiwrajka N, Joerns EK, Lee JS, Makol A, McDermott GC, Natalini JG, Oldham JM, Saygin D, Lakin KS, Singh N, Solomon JJ, Sparks JA, Turgunbaev M, Vaseer S, Turner A, Uhl S, and Ivlev I

Subjects
Humans, Scleroderma, Systemic complications, United States, Disease Progression, Societies, Medical, Lung Diseases, Interstitial drug therapy, Rheumatic Diseases complications, Rheumatic Diseases drug therapy, Glucocorticoids therapeutic use, Autoimmune Diseases complications, Autoimmune Diseases drug therapy, Rheumatology standards
Abstract

Objective: We provide evidence-based recommendations regarding the treatment of interstitial lung disease (ILD) in adults with systemic autoimmune rheumatic diseases (SARDs)., Methods: We developed clinically relevant population, intervention, comparator, and outcomes questions. A systematic literature review was then performed, and the available evidence was rated using the Grading of Recommendations, Assessment, Development, and Evaluation methodology. A panel of clinicians and patients reached consensus on the direction and strength of the recommendations., Results: Thirty-five recommendations were generated (including two strong recommendations) for first-line SARD-ILD treatment, treatment of SARD-ILD progression despite first-line ILD therapy, and treatment of rapidly progressive ILD. The strong recommendations were against using glucocorticoids in systemic sclerosis-ILD as a first-line ILD therapy and after ILD progression. Otherwise, glucocorticoids are conditionally recommended for first-line ILD treatment in all other SARDs., Conclusion: This clinical practice guideline presents the first recommendations endorsed by the American College of Rheumatology and American College of Chest Physicians for the treatment of ILD in people with SARDs., (© 2024 American College of Rheumatology.)

Published
2024
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