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Purpose <p>Informal caregivers play a critical role in the management of adult patients with inflammatory bowel disease (IBD), yet the association between their contribution to patient self-care and their own health-related quality of life (HRQoL) remains underexplored. This study aimed to examine the cross-sectional association between caregivers’ contribution to patient self-care and caregivers’ physical and mental HRQoL.</p> Methods <p>A multicentre cross-sectional study was conducted across nine IBD centres in Italy. Caregiver contribution to patient self-care was assessed using the Caregiver Contribution to Self-Care of Chronic Illness Inventory (CC-SC-CII), including Maintenance, Monitoring, and Management domains. HRQoL was measured using the 12-Item Short Form Survey, yielding Physical Component Summary (PCS-12) and Mental Component Summary (MCS-12) scores. Generalized Additive Models were used to estimate potential non-linear associations between CC-SC-CII domains and HRQoL.</p> Results <p>The study included 275 informal caregivers. No statistically supported associations were observed between CC-SC-CII Maintenance, Monitoring, or Management and PCS-12. For MCS-12, only CC-SC-CII Maintenance showed a statistically supported non-linear association (edf = 4.34, F = 2.21, <i>p</i> = 0.018; adjusted R<sup>2</sup> = 0.272; deviance explained = 38.1%). The model-estimated MCS-12 difference between the 75th and 25th percentiles of CC-SC-CII Maintenance was 6.58 points (95% CI 1.50–11.70). No statistically supported associations were observed for CC-SC-CII Monitoring or Management and MCS-12.</p> Conclusion <p>Caregiver contribution to patient self-care maintenance was associated with caregivers’ mental, but not physical, HRQoL. The findings should be interpreted as exploratory associations and require confirmation in longitudinal dyadic studies including both caregiver- and patient-reported outcomes.</p>

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Caregiver contribution to patient self‑care and quality of life among informal carers of adult patients with inflammatory bowel disease: a cross‑sectional study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年6月15日

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  • Daniele Napolitano,
  • Maria Francisca Murgiano Gonzalo,
  • Alessio Lo Cascio,
  • Fabrizio Benedetti,
  • Arianna Povoli,
  • Teresa Sanità,
  • Valeria Suriano,
  • Greta Lorenzon,
  • Arianna Luongo,
  • Debora Zaetta,
  • Francesca De Marinis,
  • Nicoletta Orgiana,
  • Giulia Petruccini,
  • Valentina Vanzi,
  • Francesco Pastore,
  • Adriana Rivera-Sequeiros,
  • Mattia Bozzetti

摘要

Purpose

Informal caregivers play a critical role in the management of adult patients with inflammatory bowel disease (IBD), yet the association between their contribution to patient self-care and their own health-related quality of life (HRQoL) remains underexplored. This study aimed to examine the cross-sectional association between caregivers’ contribution to patient self-care and caregivers’ physical and mental HRQoL.

Methods

A multicentre cross-sectional study was conducted across nine IBD centres in Italy. Caregiver contribution to patient self-care was assessed using the Caregiver Contribution to Self-Care of Chronic Illness Inventory (CC-SC-CII), including Maintenance, Monitoring, and Management domains. HRQoL was measured using the 12-Item Short Form Survey, yielding Physical Component Summary (PCS-12) and Mental Component Summary (MCS-12) scores. Generalized Additive Models were used to estimate potential non-linear associations between CC-SC-CII domains and HRQoL.

Results

The study included 275 informal caregivers. No statistically supported associations were observed between CC-SC-CII Maintenance, Monitoring, or Management and PCS-12. For MCS-12, only CC-SC-CII Maintenance showed a statistically supported non-linear association (edf = 4.34, F = 2.21, p = 0.018; adjusted R2 = 0.272; deviance explained = 38.1%). The model-estimated MCS-12 difference between the 75th and 25th percentiles of CC-SC-CII Maintenance was 6.58 points (95% CI 1.50–11.70). No statistically supported associations were observed for CC-SC-CII Monitoring or Management and MCS-12.

Conclusion

Caregiver contribution to patient self-care maintenance was associated with caregivers’ mental, but not physical, HRQoL. The findings should be interpreted as exploratory associations and require confirmation in longitudinal dyadic studies including both caregiver- and patient-reported outcomes.