Background Patients with primary Sjögren's syndrome (PSS) experience a range of symptoms including dryness, fatigue, pain and low mood. The impact of these symptoms upon the people with whom they live, is unknown. The caregiver strain index (CSI) is a thirteen item questionnaire which measures strain in caregivers (Robinson 1983).
Objectives To determine whether adults living in the same household as a person with PSS experience caregiver strain and to examine the relationship between caregiver strain and other factors.
Methods We collected age, Carer Strain Index (CSI) and quality of life (QOL) (SF-36) scores from 62 adults who shared a home with a PSS patient. We also collected various measures from the PSS patients that they lived with. The patient measures included; age, time since diagnosis, fatigue, dryness, pain, QOL, depression, anxiety, and physical function (Improved HAQ). We conducted Spearman correlations to compare the relationship between the carers' CSI and SF-36 scores as well as the measures from the patients they lived with. We performed multivariate analyses on factors that significantly correlated with CSI scores.
Results The caregiver strain scores are shown in the Figure. Although a median CSI score of 1 demonstrates that most AHM participants experienced very little caregiver strain, 14% of AHM participants did experience high levels (indicated with a CSI score ≥7).
Age and PSS disease duration negatively correlated with carer strain. Increased pain, fatigue, mental fatigue, physical functioning, anxiety, depression in the patients and SF-36 physical component scores in the household members all significantly correlated with increased carer strain. There was no relationship between dryness scores and age of the PSS patient and CSI scores.
Multivariate analysis suggests the main predictor of increased carer strain was depression in the PSS patient and younger age of the household member.
Conclusions Caregiver strain is evident in a proportion of adults sharing a home with a person with PSS. Caregivers of patients with high depression scores are particularly susceptible and may benefit from additional support.
Robinson BC Validation of a Caregiver Strain Index. J Gerontol 1983; 38: 344–48.
Acknowledgements Arthritis Research UK (grant 20169) and the United Kingdom Occupational Therapy Research Foundation.
Disclosure of Interest None declared