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Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study

  • Special Issue: Social Isolation and Loneliness in Acute and Chronic Illness
  • Published:
International Journal of Behavioral Medicine Aims and scope Submit manuscript

Abstract

Background

Many individuals with systemic sclerosis (SSc) are at heightened risk for COVID-19 related morbidity and isolation due to interstitial lung disease, frailty, and immunosuppressant use. Minimal research has explored loneliness predictors in individuals with chronic illnesses during COVID-19. This study evaluated moderators of loneliness trajectories in individuals with SSc during COVID-19.

Methods

Longitudinal data were analyzed across 30 timepoints from April 2020 to May 2022 from 775 adults in the Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort. Hierarchical linear modeling evaluated cross-level moderators of loneliness trajectories, including marital status, baseline number of household members, number of virtual or telephone one-on-one or virtual group conversations, number of hours spent enjoying in-person household conversations or activities, and satisfaction with quality of in-person household conversations (all in the past week). Level-1 moderation analyses assessed effects of conversation, activity, and satisfaction means and slopes over time.

Results

Baseline values were not statistically significant moderators of loneliness trajectories. Higher mean (averaged over time) virtual or telephone one-on-one and in-person household conversations, in-person household activity, and in-person household conversation satisfaction were associated with lower loneliness trajectories (ps < .05). The relationship between in-person household conversation satisfaction and loneliness trajectory was statistically significantly but minimally attenuated over time (p < .001).

Conclusions

For people with SSc, higher mean conversation, activity, and satisfaction variables were associated with lower levels of loneliness during the pandemic, but changes in these social variables were generally not predictive of changes in loneliness.

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Data Availability

De-identified individual participant data with a data dictionary and analysis codes that were used to generate the results reported in this article will be made available upon request to the corresponding author and after presentation of a methodologically sound proposal that is approved by the Scleroderma Patient-centered Intervention Network Data Access and Publications Committee. Data will be available beginning 12 months after publication. Data requestors will need to sign a data transfer agreement.

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Acknowledgements

SPIN COVID-19 Patient Advisory Team Catherine Fortuné, Ottawa Scleroderma Support Group, Ottawa, Ontario, Canada; Amy Gietzen, National Scleroderma Foundation, Tri-State Chapter, Buffalo, New York, USA; Geneviève Guillot, Sclérodermie Québec, Longueuil, Quebec, Canada; Nancy Lewis, Toronto, Ontario, Canada; Karen Nielsen, Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Michelle Richard, Scleroderma Atlantic, Halifax, Nova Scotia, Canada; Maureen Worron-Sauvé, Scleroderma Society of Ontario, Hamilton, Ontario, Canada

SPIN Investigators

Marie Hudson, McGill University, Montreal, Quebec, Canada; Laura K. Hummers, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA; Warren R. Nielson, St. Joseph’s Health Care, London, Ontario, Canada; Robyn K. Wojeck, University of Rhode Island, Kingston, Rhode Island, USA; Claire E. Adams, Jewish General Hospital, Montreal, Quebec, Canada; Shervin Assassi, University of Texas McGovern School of Medicine, Houston, Texas, USA; Ghassan El-Baalbaki, Université du Québec à Montréal, Montreal, Quebec, Canada; Kim Fligelstone, Scleroderma & Raynaud’s UK, London, UK; Tracy Frech, University of Utah, Salt Lake City, Utah, USA; Daphna Harel, New York University, New York, New York, USA; Monique Hinchcliff, Yale School of Medicine, New Haven, Connecticut, USA; Sindhu R. Johnson, Toronto Scleroderma Program, Mount Sinai Hospital, Toronto Western Hospital, and University of Toronto, Toronto, Ontario, Canada; Maggie Larche, McMaster University, Hamilton, Ontario, Canada; Catarina Leite, University of Minho, Braga, Portugal; Christelle Nguyen, Université Paris Descartes, and Assistance Publique—Hôpitaux de Paris, Paris, France; Janet Pope, University of Western Ontario, London, Ontario, Canada; François Rannou, Université Paris Descartes, and Assistance Publique—Hôpitaux de Paris, Paris, France; Tatiana Sofia Rodriguez Reyna, Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico; Anne A. Schouffoer, Leiden University Medical Center, Leiden, the Netherlands; Maria E. Suarez-Almazor, University of Texas MD Anderson Cancer Center, Houston, Texas, USA; Christian Agard, Centre Hospitalier Universitaire—Hôtel-Dieu de Nantes, Nantes, France; Marc André, Centre Hospitalier Universitaire Gabriel-Montpied, Clermont-Ferrand, France; Elana J. Bernstein, Columbia University, New York, New York, USA; Sabine Berthier, Centre Hospitalier Universitaire Dijon Bourgogne, Dijon, France; Lyne Bissonnette, Université de Sherbrooke, Sherbrooke, Quebec, Canada; Alessandra Bruns, Université de Sherbrooke, Sherbrooke, Quebec, Canada; Carlotta Cacciatore, Assistance Publique – Hôpitaux de Paris, Hôpital St-Louis, Paris, France; Patricia Carreira, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Marion Casadevall, Assistance Publique—Hôpitaux de Paris, Hôpital Cochin, Paris, France; Benjamin Chaigne, Assistance Publique—Hôpitaux de Paris, Hôpital Cochin, Paris, France; Lorinda Chung, Stanford University, Stanford, California, USA; Benjamin Crichi, Assistance Publique—Hôpitaux de Paris, Hôpital St-Louis, Paris, France; Christopher Denton, Royal Free London Hospital, London, UK; Robyn Domsic, University of Pittsburgh, Pittsburgh, Pennsylvania, USA; James V. Dunne, St. Paul's Hospital and University of British Columbia, Vancouver, British Columbia, Canada; Bertrand Dunogue, Assistance Publique—Hôpitaux de Paris, Hôpital Cochin, Paris, France; Regina Fare, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Dominique Farge-Bancel, Assistance Publique—Hôpitaux de Paris, Hôpital St-Louis, Paris, France; Paul R. Fortin, CHU de Québec—Université Laval, Quebec, Quebec, Canada; Jessica Gordon, Hospital for Special Surgery, New York City, New York, USA; Brigitte Granel-Rey, Aix Marseille Université, and Assistance Publique—Hôpitaux de Marseille, Hôpital Nord, Marseille, France; Aurélien Guffroy, Les Hôpitaux Universitaires de Strasbourg, Nouvel Hôpital Civil, Strasbourg, France; Genevieve Gyger, Jewish General Hospital and McGill University, Montreal, Quebec, Canada; Eric Hachulla, Centre Hospitalier Régional Universitaire de Lille, Hôpital Claude Huriez, Lille, France; Sabrina Hoa, Centre hospitalier de l’université de Montréal – CHUM, Montreal, Quebec, Canada; Alena Ikic, CHU de Québec—Université Laval, Quebec, Quebec, Canada; Niall Jones, University of Alberta, Edmonton, Alberta, Canada; Suzanne Kafaja, University of California, Los Angeles, California, USA; Nader Khalidi, McMaster University, Hamilton, Ontario, Canada; Kimberly Lakin, Hospital for Special Surgery, New York City, New York, USA; Marc Lambert, Centre Hospitalier Régional Universitaire de Lille, Hôpital Claude Huriez, Lille, France; David Launay, Centre Hospitalier Régional Universitaire de Lille, Hôpital Claude Huriez, Lille, France; Yvonne C. Lee, Northwestern University, Chicago, Illinois, USA; Hélène Maillard, Centre Hospitalier Régional Universitaire de Lille, Hôpital Claude Huriez, Lille, France; Nancy Maltez, University of Ottawa, Ottawa, Ontario, Canada; Joanne Manning, Salford Royal NHS Foundation Trust, Salford, UK; Isabelle Marie, CHU Rouen, Hôpital de Bois-Guillaume, Rouen, France; Maria Martin, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Thierry Martin, Les Hôpitaux Universitaires de Strasbourg, Nouvel Hôpital Civil, Strasbourg, France; Ariel Masetto, Université de Sherbrooke, Sherbrooke, Quebec, Canada; François Maurier, Uneos—Groupe hospitalier associatif, Metz, France; Arsene Mekinian, Assistance Publique—Hôpitaux de Paris, Hôpital St-Antoine, Paris, France; Sheila Melchor Díaz, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Mandana Nikpour, St Vincent’s Hospital and University of Melbourne, Melbourne, Victoria, Australia; Louis Olagne, Centre Hospitalier Universitaire Gabriel-Montpied, Clermont-Ferrand, France; Vincent Poindron, Les Hôpitaux Universitaires de Strasbourg, Nouvel Hôpital Civil, Strasbourg, France; Susanna Proudman, Royal Adelaide Hospital and University of Adelaide, Adelaide, South Australia, Australia; Alexis Régent, Assistance Publique—Hôpitaux de Paris, Hôpital Cochin, Paris, France; Sébastien Rivière, Assistance Publique—Hôpitaux de Paris, Hôpital St-Antoine, Paris, France; David Robinson, University of Manitoba, Winnipeg, Manitoba, Canada; Esther Rodríguez Almazar, Servicio de Reumatologia del Hospital 12 de Octubre, Madrid, Spain; Sophie Roux, Université de Sherbrooke, Sherbrooke, Quebec, Canada; Perrine Smets, Centre Hospitalier Universitaire Gabriel-Montpied, Clermont-Ferrand, France; Vincent Sobanski, Centre Hospitalier Régional Universitaire de Lille, Hôpital Claude Huriez, Lille, France; Robert Spiera, Hospital for Special Surgery, New York City, New York, USA; Virginia Steen, Georgetown University, Washington, DC, USA; Evelyn Sutton, Dalhousie University, Halifax, Nova Scotia, Canada; Carter Thorne, Southlake Regional Health Centre, Newmarket, Ontario, Canada; John Varga, University of Michigan, Ann Arbor, Michigan, USA (also SPIN COVID-19 Project Team); Pearce Wilcox, St. Paul's Hospital and University of British Columbia, Vancouver, British Columbia, Canada; Mara Cañedo Ayala, Jewish General Hospital, Montreal, Quebec, Canada; Vanessa Cook, Jewish General Hospital, Montreal, Quebec, Canada; Sophie Hu, Jewish General Hospital, Montreal, Quebec, Canada; Bianca Matthews, Jewish General Hospital, Montreal, Quebec, Canada; Elsa-Lynn Nassar, Jewish General Hospital, Montreal, Quebec, Canada; Marieke Alexandra Neyer, Jewish General Hospital, Montreal, Quebec, Canada; Julia Nordlund, Jewish General Hospital, Montreal, Quebec, Canada; and Sabrina Provencher, Jewish General Hospital, Montreal, Quebec, Canada.

Funding

The Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort has received funding from the Canadian Institutes of Health Research (CIHR; VR4-172745, GA4-177764) and the Mi4 McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund. The SPIN Cohort has received funding from CIHR; the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montreal, Quebec, Canada; the Jewish General Hospital Foundation, Montreal, Quebec, Canada; and McGill University, Montreal, Quebec, Canada. SPIN has also received support from the Scleroderma Society of Ontario; Scleroderma Canada; Sclérodermie Québec; Scleroderma Manitoba; Scleroderma Atlantic; the Scleroderma Association of BC; Scleroderma SASK; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; and Scleroderma Queensland. Dr. Henry was supported by a CIHR Postdoctoral Fellowship and Dr. Thombs by a Tier 1 Canada Research Chair, both outside of the present work. Ms. Choi was supported by a National Science Foundation Graduate Research Fellowship under Grant 1842470 and the Rheumatology Research Foundation Medical and Graduate Student Preceptorship. Ms. Rapoport was supported by the Rheumatology Research Foundation Medical and Graduate Student Preceptorship. No sponsor had any role in the study design; in the collection, analysis and interpretation of the data; in the writing of the report; or in the decision to submit the paper for publication.

Author information

Authors and Affiliations

  1. SDSU/UC San Diego Joint Doctoral Program in Clinical Psychology, San Diego, CA, USA

    Chelsea S. Rapoport, Alyssa K. Choi, Scott C. Roesch & Vanessa L. Malcarne

  2. Department of Clinical Psychology, Radboud University, Nijmegen, the Netherlands

    Linda Kwakkenbos

  3. Department of IQ Healthcare, Radboud University Medical Center, Nijmegen, the Netherlands

    Linda Kwakkenbos

  4. Department of Psychiatry, Radboud University Medical Center, Nijmegen, the Netherlands

    Linda Kwakkenbos

  5. Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada

    Marie-Eve Carrier, Richard S. Henry, Brooke Levis & Brett D. Thombs

  6. Department of Psychiatry, McGill University, Montreal, QC, Canada

    Richard S. Henry & Brett D. Thombs

  7. Department of Medicine, McGill University, Montreal, QC, Canada

    Susan J. Bartlett, Andrea Benedetti & Brett D. Thombs

  8. Research Institute of the McGill University Health Centre, Montreal, QC, Canada

    Susan J. Bartlett

  9. National Scleroderma Foundation, Tri-State Chapter, Buffalo, NY, USA

    Amy Gietzen

  10. National Scleroderma Foundation, Los Angeles, CA, USA

    Karen Gottesman

  11. Sclérodermie Québec, Longueuil, QC, Canada

    Geneviève Guillot

  12. Scleroderma Australia, Melbourne, VIC, Australia

    Amanda Lawrie-Jones

  13. Scleroderma Victoria, Melbourne, VIC, Australia

    Amanda Lawrie-Jones

  14. Department of Internal Medicine, University of Texas McGovern School of Medicine, Houston, TX, USA

    Maureen D. Mayes

  15. Service de Médecine Interne, Centre de Référence Maladies Autoimmunes Systémiques Rares d’Ile de France, Hôpital Cochin, Assistance Publique - Hôpitaux de Paris (AP-HP), Paris, France

    Luc Mouthon

  16. APHP-CUP, Hôpital Cochin, Paris, France

    Luc Mouthon

  17. Scleroderma Atlantic, Halifax, NS, Canada

    Michelle Richard

  18. Scleroderma Society of Ontario, Hamilton, ON, Canada

    Maureen Worron-Sauvé

  19. Scleroderma Canada, Hamilton, ON, Canada

    Maureen Worron-Sauvé

  20. Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada

    Andrea Benedetti & Brett D. Thombs

  21. Respiratory Epidemiology and Clinical Research Unit, McGill University Health Centre, Montreal, QC, Canada

    Andrea Benedetti

  22. Department of Psychology, San Diego State University, 6363 Alvarado Ct., Ste. 103, San Diego, CA, 92120, USA

    Scott C. Roesch & Vanessa L. Malcarne

  23. Biomedical Ethics Unit, McGill University, Montreal, QC, Canada

    Brett D. Thombs

Authors
  1. Chelsea S. Rapoport
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  2. Alyssa K. Choi
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  3. Linda Kwakkenbos
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  4. Marie-Eve Carrier
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  5. Richard S. Henry
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  6. Brooke Levis
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  7. Susan J. Bartlett
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  8. Amy Gietzen
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  9. Karen Gottesman
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  10. Geneviève Guillot
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  11. Amanda Lawrie-Jones
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  12. Maureen D. Mayes
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  13. Luc Mouthon
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  14. Michelle Richard
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  15. Maureen Worron-Sauvé
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  16. Andrea Benedetti
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  17. Scott C. Roesch
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  18. Brett D. Thombs
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  19. Vanessa L. Malcarne
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Consortia

SPIN COVID-19 Patient Advisory Team

  • Catherine Fortuné
  • , Amy Gietzen
  • , Geneviève Guillot
  • , Nancy Lewis
  • , Karen Nielsen
  • , Michelle Richard`
  •  & Maureen Worron-Sauvé

SPIN Investigators

  • Marie Hudson
  • , Laura K. Hummers
  • , Warren R. Nielson
  • , Robyn K. Wojeck
  • , Claire E. Adams
  • , Shervin Assassi
  • , Ghassan El-Baalbaki
  • , Kim Fligelstone
  • , Tracy Frech
  • , Daphna Harel
  • , Monique Hinchcliff
  • , Sindhu R. Johnson
  • , Maggie Larche
  • , Catarina Leite
  • , Christelle Nguyen
  • , Janet Pope
  • , François Rannou
  • , Tatiana Sofia Rodriguez Reyna
  • , Anne A. Schouffoer
  • , Maria E. Suarez-Almazor
  • , Christian Agard
  • , Marc André
  • , Elana J. Bernstein
  • , Sabine Berthier
  • , Lyne Bissonnette
  • , Alessandra Bruns
  • , Carlotta Cacciatore
  • , Patricia Carreira
  • , Marion Casadevall
  • , Benjamin Chaigne
  • , Lorinda Chung
  • , Benjamin Crichi
  • , Christopher Denton
  • , Robyn Domsic
  • , James V. Dunne
  • , Bertrand Dunogue
  • , Regina Fare
  • , Dominique Farge-Bancel
  • , Paul R. Fortin
  • , Jessica Gordon
  • , Brigitte Granel-Rey
  • , Aurélien Guffroy
  • , Genevieve Gyger
  • , Eric Hachulla
  • , Sabrina Hoa
  • , Alena Ikic
  • , Niall Jones
  • , Suzanne Kafaja
  • , Nader Khalidi
  • , Kimberly Lakin
  • , Marc Lambert
  • , David Launay
  • , Yvonne C. Lee
  • , Hélène Maillard
  • , Nancy Maltez
  • , Joanne Manning
  • , Isabelle Marie
  • , Maria Martin
  • , Thierry Martin
  • , Ariel Masetto
  • , François Maurier
  • , Arsene Mekinian
  • , Sheila Melchor Díaz
  • , Mandana Nikpour
  • , Louis Olagne
  • , Vincent Poindron
  • , Susanna Proudman
  • , Alexis Régent
  • , Sébastien Rivière
  • , David Robinson
  • , Esther Rodríguez Almazar
  • , Sophie Roux
  • , Perrine Smets
  • , Vincent Sobanski
  • , Robert Spiera
  • , Virginia Steen
  • , Evelyn Sutton
  • , Carter Thorne
  • , John Varga
  • , Pearce Wilcox
  • , Mara Cañedo Ayala
  • , Vanessa Cook
  • , Sophie Hu
  • , Bianca Matthews
  • , Elsa-Lynn Nassar
  • , Marieke Alexandra Neyer
  • , Julia Nordlund
  •  & Sabrina Provencher

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Correspondence to Vanessa L. Malcarne.

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Rapoport, C.S., Choi, A.K., Kwakkenbos, L. et al. Moderators of Loneliness Trajectories in People with Systemic Sclerosis During the COVID-19 Pandemic: A SPIN COVID-19 Cohort Longitudinal Study. Int.J. Behav. Med. (2024). https://doi.org/10.1007/s12529-023-10248-0

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