Patients’ views on care and their association with outcomes in palliative care

11th November 2019

When patients face advanced illness, their experience of care is especially important. In palliative care, researchers often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care.

Researchers based at the Cicely Saunders Institute, Hull York Medical School and St Christopher’s Hospice recently reported on a new questionnaire, Views on Care (VOC), to address this gap.

The questionnaire consists of four questions (see the following link for full questionnaire: selected/refined from St Christopher’s Index of Patient Priorities (SKIPP) which address patients’ evaluation of (1) change in their main concerns, (2) benefit from palliative services, (3) previous and (4) current quality of life (3 and 4 adapted from EORTC QLQ-C15-PAL – well-validated in advanced illness).

The researchers conducted a survey to examine patients’ views on care (using VOC) and the relationship between these views and changes in health status. Participants were adults receiving specialist palliative care in eight hospital, hospice inpatient and community settings across England. The researchers collected demographic details (age, gender, ethnicity, marital status, if living alone, presence of informal caregiver, diagnosis, palliative phase of illness and performance status), plus patient-reported survey at baseline and follow-up (3–5 days later for inpatient and 7–21 days later for community settings)

A total of 212 participants were recruited; mean age was 65.84  years, mainly with cancer (79.5%). Most participants reported that things were getting better and that palliative care was providing benefit. This was found across different settings and palliative Phases of Illness. Patients reported positive change more often when physical (rather than overall, psychological or communication/practical) outcomes had improved.

The researchers found that reports of positive impact of the palliative care teams was associated with improvement in communication/practical outcomes, but not with improvement in outcomes overall. This is an important finding as it demonstrates how much communication and practical matters influence the experience of care. It also illustrates that both outcomes and experience need to be measured if quality of care is to be properly understood.

This is the first study that has examined patients’ responses to the VOC questionnaire. Further research is needed to understand how VOC relates to more generic experience measures, how it behaves over time and to test its psychometric properties. However, VOC is brief and easy to use on a large scale with patients receiving palliative care across different settings. Its uniqueness is that it is brief and easy enough to use for ill patients receiving palliative care, in order to provide patient-level feedback in real time, rather than the institutional-level indicators that are often used to assess the quality of healthcare services. It adds very little burden to professionals, enabling patient feedback while taking up little time or effort. The researchers hope it will be of value for clinical practice.

Pinto C, Firth AM, Groeneveld E, Guo P, Sykes N, Murtagh FEM. Patients’ views on care and their association with outcomes in palliative care. Palliative Medicine 2019 (3) 467-469