Carers of patients with HGG are more distressed than the patients: Understanding the experience of caregivers — ASN Events
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Carers of patients with HGG are more distressed than the patients: Understanding the experience of caregivers (#853)

Georgia Halkett 1 , Elizabeth Lobb 2 , Anne Long 3 , Celine Fournier 1 , Anna Nowak 3
  1. Western Australia Centre for Cancer and Palliative Care, Curtin Health Innovation Research Institute Curtin University , Perth, WA, Australia
  2. Calvary Health Care Sydney and Cunningham Centre for Palliative Care, Calvary Health Care, Sydney, NSW, Australia
  3. Sir Charles Gairdner Hospital, Nedlands, WA, Australia

Background: Our previous qualitative study showed that family caregivers of people with HGG  experience rapid role changes, new daunting responsibilities, and altered relationships with their loved one1. There have been few studies looking at unmet needs of caregivers of people with HGG.

Methods:  Consenting caregivers and patients with HGG planned for combined chemoradiotherapy were recruited to this prospective longitudinal cohort study.  All participants completed the validated Supportive Care Needs Survey (SCNS) including the Access to Services subscale, Brain Tumour Specific Supportive Care Needs Survey (BTSSCNS), and Distress Thermometer (DT).  Caregivers also completed the General Health Questionnaire (GHQ) examining self-reported anxiety and depression, social dysfunction, and loss of confidence. Questionnaires were administered during patient chemoradiotherapy and three and six months later; here we present baseline caregiver results. Analysis used SPSS v20.

Results:  115 caregivers/114 patients were recruited. Caregiver demographics:  female (72%); mean age 53 years; caring for spouse (82%). 72% of caregivers reported financial impact and 51% of those previously working full-time had taken leave or reduced working hours. Regarding caregiving, 37% felt they had learnt new skills; 5% felt non-confident; and 14% felt unprepared. 31% of caregivers reported moderate distress (DT score 5-6) and 31% reported extreme distress (score 7-10) . Distress scores were moderately correlated within dyads (r=0.4, p<0.001) but caregivers reported significantly more distress than patients (mean 5.1 vs 4.1; paired t test p=0.01). Caregiver distress was associated with high GHQ scores, (r=0.61, p<0.001).  The top 5 moderate/high unmet needs were: accessing prognostic information; accessing financial support and government benefits; accessible hospital parking; impact of caring on usual life; reducing stress in the patients’ life.

Conclusion: Carers were more distressed than patients and high distress levels were associated with more mental health concerns in carers. Development of a caregiver-specific intervention is underway.