Burden on primary caregivers of individuals with pancreatic cancer: results from the all-Ireland PanCAM study


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Damian O'Driscoll (1), Michael O'Rorke (2), Linda O'Keeffe (1), Kevin Conlon (3), Liam Murray (2), Linda Sharp (1)
National Cancer Registry Ireland, Cork, Ireland (1), Queens University, Belfast, United Kingdom (2), Adelaide and Meath Hospital, Dublin Incorporating the National Children's Hospital, Dublin, Ireland (3)

Background

A diagnosis of pancreatic cancer (PCa) inflicts a formidable burden on individuals. Little is known about the impact on family members of caring for someone diagnosed with PCa. This study aimed to quantify the burden on primary carers and to identify factors associated with caregiver burden.

Method

Incident PCa cases, diagnosed October 2007-February 2010, were recruited to an all-Ireland case-control study (PanCAM), underwent a structured face-to-face interview soon after diagnosis, and were asked to nominate their main carergiver. Caregivers completed a questionnaire including the 24-item Caregiver Reaction Assessment.1 Overall caregiver burden (possible range 5-25)2 and mean scores on each of 5 subscales encompassing negative and positive caregiving reactions (possible range 1-5) were computed and compared by caregiver and patient characteristics.

Results

175 cases were recruited; 78 (45%) nominated a caregiver who completed a questionnaire. The mean overall burden score was 11.37 (standard deviation (sd)=2.53). This did not vary by caregiver age, sex, relationship to patient, hours spent caring, whether the caregiver lived with the patient or patient socio-demographic characteristics, but was significantly higher in caregivers who reported their health as fair, compared to those whose health was good or very good/excellent (p<0.001). Regarding negative aspects of caring, the mean score was highest for impact on schedule (3.30, sd=0.87), slightly lower for impact on health (2.35, sd=0.77) and impact on finances (2.32, sd=0.85) and lowest for lack of family support (1.86, sd=0.88). Caregivers with poorer health status had significantly higher scores for lack of family support (p=0.001) and impact on finances (p=0.018). Regarding positive aspects of caring, levels of esteem were high overall (mean=4.44, sd=0.51) and significantly higher among male, than female, caregivers (p=0.038).

Conclusion

This is the first study of caregiver burden in PCa. The observed associations between burden and caregiver health status suggests a group who may need particular support.

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