Improvement of quality of life (QoL) is a fundamental goal of care for people with advanced cancer. The Quality of Life at the End of Life (QUAL-E) instrument was developed to measure four domains: Symptom control; Relationship with healthcare provider; Preparation for end of life (concerns about loved ones); and Life completion1. Piloting the QUAL-E with Australian palliative inpatients (n=52) demonstrated acceptability and face validity2. A reduced 17-item instrument, the QUAL-E-Cancer (QUAL-EC), validated with Canadian patients (n=464) was recommended to assess QoL in people with advanced cancer3.
Aims
This study evaluated the utility and feasibility of the QUAL-EC by:
• Exploring associations between QUAL-EC domain scores and distress.
• Exploring in-depth responses to the QUAL-EC when administered as an interview.
Methods
A cross-sectional, mixed methods design was used. Convenience sampling recruited patients with advanced cancer and a prognosis of less than 12 months from a tertiary hospital. Participants completed the QUAL-EC and the Distress Thermometer Screening Tool4 (DT). Qualitative data collection involved digital recordings of QUAL-EC interviews.
Results
The accrual target of 25 inpatients (78% response) and 25 outpatients (96% response) was reached. The mean age was 59.9 years. The most common diagnoses were mesothelioma (26%), and cancers of the lung (22%) and brain (10%). Patients’ DT scores indicated that 39.6% were experiencing severe distress (score ≥7) while 40% reported moderate distress (score 4-6). Levels of distress significantly correlated with two QUAL-EC domains: Symptom control (r=0.52, p<0.001) and Preparation for end of Life (r=0.32, p<0.05). Qualitative analysis described the influence of pervasive emotional stress, bothersome symptoms, and psychosocial factors on QUAL-EC responses.
Conclusions
Distress was associated with either symptom burden, or concerns about loved ones. When distress is identified on screening, the QUAL-EC offers potential as an instrument capable of nuanced assessment to direct intervention towards psychosocial or physical and symptom-related concerns.