SEARCHCROSS-SECTIONALrheumatology, internal medicine

cross-sectional·rheumatology, internal medicine, epidemiology, public health·PMC10515994

Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study

Journal of Scleroderma and Related Disorders · 6 authors, 10 centres

AI SUMMARY

FIDELITY 100%

POPULATIONPeople with systemic sclerosis (SSc) attending North American support groups

INTERVENTION

COMPARISONTime since diagnosis (0–3 years, 4–9 years, 10+ years)

This summary was generated by AI from a single paper. It has not been reviewed by a clinician and is not clinical advice. Verify against the source before acting on it.

AGENT 01 · STRUCTURED SUMMARY

TRACE TO SOURCE

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TL;DR

A cross-sectional survey of 175 systemic sclerosis patients found that informational and support needs are important regardless of disease duration, but individuals diagnosed within the last 3 years report significantly greater needs in several areas.

Full summary

606 CHARS

Respondents were grouped into 0–3, 4–9, and 10+ years since diagnosis and rated 30 support-related items. The central result is that most needs, particularly for interpersonal/social support and disease treatment/management strategies, were rated as 'Important' or 'Very Important' by respondents across all disease durations, with medians of 81% and 82% respectively. However, respondents with a recent diagnosis (0–3 years) were significantly more likely to rate needs related to discussing medical care and other aspects like spirituality, family communication, finances, and sexual issues as important.

PICO

PPOPULATION

People with systemic sclerosis (SSc) attending North American support groups

OOUTCOME

Self-rated importance of informational and support needs

STUDY TYPE

cross-sectional

SPECIALTY

rheumatology

SUMMARISED BY

AI pipeline

FIDELITY CHECK

100% · A

ORIGINAL PAPER

PMC10515994

Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study

Journal of Scleroderma and Related Disorders

READ THE FULL PAPER

ABSTRACT

Abstract Background: How support and informational needs of people with systemic sclerosis (SSc) may differ by time since diagnosis is not known. Our objective was to determine if informational and support needs of recently diagnosed individuals with systemic sclerosis differ from people diagnosed for longer periods of time. Methods: The North American Scleroderma Support Group Members survey included 30 items on reasons for attending support groups. Respondents were classified by time since diagnosis of 0–3 years, 4–9 years or 10+ years. Survey item responses were dichotomized into Not Important or Somewhat Important versus Important or Very Important . We conducted Chi-square tests with Hochberg’s Sequential Method to identify item differences by time since diagnosis. Results: A total of 175 respondents completed the survey. Most support needs were rated as Important or Very Important by respondents, regardless of disease duration, particularly needs related to interpersonal and social support (10 items; median 81%) and learning about disease treatment and management strategies (11 items; median 82%). Discussing other aspects of living with systemic sclerosis (e.g. spirituality, discussing disease with family and friends) was rated lower (9 items; 44%). Respondents with 0–3 years since diagnosis were the highest on 29 of 30 items. Respondents with 0–3 years since diagnosis were significantly higher on items related to discussing medical care and 4 items on other aspects (spirituality, talking with family and friends, financial issues, sexual issues). Conclusion: People with systemic sclerosis have a wide range of information and support needs, regardless of their disease duration, but people with recent diagnoses have greater needs. Keywords: Patient support, scleroderma, systemic sclerosis, disease duration, newly diagnosed

CITATION EXPORT

Sabrina Provencher, Richard S Henry, Carolina Bacalao et al.. Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study. Journal of Scleroderma and Related Disorders. (2023). https://doi.org/10.1177/23971983231181726

AUTHORS

6 · 10 CENTRES

Sabrina Provencher, Richard S Henry, Carolina Bacalao, Marie-Eve Carrier, Linda Kwakkenbos, Brett D Thombs

1Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada
2Department of Psychiatry, McGill University, Montreal, QC, Canada
3Department of Clinical Psychology, Radboud University, Nijmegen, the Netherlands
4Department of IQ Healthcare, Radboud University Medical Center, Nijmegen, the Netherlands
5Department of Psychiatry, Center for Mindfulness, Radboud University Medical Center, Nijmegen, the Netherlands
6Department of Medicine, McGill University, Montreal, QC, Canada
7Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada
8Department of Psychology, McGill University, Montreal, QC, Canada
9Biomedical Ethics Unit, McGill University, Montreal, QC, Canada
10SPIN Support Group Project Advisory Team Members: Laura Dyas, National Scleroderma Foundation Michigan Chapter, Southfield, Michigan, USA; Stephen Elrod, National Scleroderma Foundation of Southern California Patient Support Group, Bakersfield, California, USA; Catherine Fortuné, Ottawa Scleroderma Support Group, Ottawa, Ontario, Canada; Amy Gietzen, National Scleroderma Foundation, Tri-State Chapter, Buffalo, NY, USA; Karen Gottesman, National Scleroderma Foundation, Los Angeles, California, USA; Karen Nielsen, Scleroderma Society of Ontario, Hamilton, Ontario, Canada; Michelle Richard, Scleroderma Atlantic, Halifax, Nova Scotia, Canada; Ken Rozee, Scleroderma Atlantic, Halifax, Nova Scotia, Canada; Maureen Sauvé, Scleroderma Society of Ontario and Scleroderma Canada, Hamilton, Ontario, Canada; Nancy Stephens, Michigan Patient Group, Detroit, Michigan, USA