Measuring palliative care patients’ experience of care

A blog post written by Dr. Tim Luckett, Dr. Claudia Virdun & Professor Jane Phillips

Healthcare experience has a special significance for people nearing the end of life because their time is so precious and, for many, hospital is where they will spend their final days. People at this stage of life also tend to attach extra importance to ‘intangible’ aspects of care that are less easily measured than procedural aspects of care – for example, good communication and being treated with respect and dignity. The best way to tell whether a healthcare service is delivering high quality care in these regards is to ask patients and families. Patient-Reported Experience Measure, or PREM are questionnaires that capture a person’s perception of their experience with health care or service.
 

Commissioned by the NSW Bureau of Health Information (BHI), our team conducted a qualitative research study to find out how palliative care patients approach completing a PREM, how easy or burdensome they find it, and whether the quality of information collected by this method is negatively influenced by cognitive impacts from disease and treatment.
 

We asked 15 patients receiving specialist palliative care in Sydney to complete a PREM and ‘think aloud’ as they pondered each question. ‘Cognitive interviewing’ of this kind gives researchers insight into four ‘cognitive operations’ that people engage in when filling out questionnaires, including comprehension, recall of relevant experience, judgement, and choice of response. We were surprised by just how challenging most people found these operations, and struck by how careful we need to be when interpreting PREM data from people who are very unwell.
 

Even though they were receiving specialist palliative care, several patients didn’t understand what was meant by PREM questions on refusing treatment or advance care planning. Even those who did understand often struggled to remember relevant aspects of care and found it difficult to stay focused on one service, drifting onto other healthcare experiences that had stuck in their minds for being especially good or bad. Some people answered hypothetically when they had no relevant experience, guessing what the quality such care would be if they had received it. They also struggled with the 3-point response scale, tending to answer simply ‘yes’ or ‘no’ rather than giving a finer-grained response such as ‘sometimes’.
 

Findings from our study suggest that extra care is needed when administering PREMs to palliative care patients to make sure people have really understood what’s being asked of them, and are able to answer in a way that will give the information needed. This  requires very clear instructions and reminders, as well as keeping questions as simple and few as possible. Checks along the way to ensure that patients are understanding the task and focusing on the health service of interest should also be considered
 

Interestingly, while many patients struggled to complete PREM questions focused on specific aspects of care, they were all able to talk about which aspects of care they considered ‘best’ or ‘most in need of improvement’. Asking open questions of this kind may get to the heart of what each patient feels is most important about their healthcare experience, as a way of targeting improvements. And, after all, good quality patient feedback is essential if we are to understand how to go about making health services better.



Dr. Tim Luckett
Senior Lecturer
University of Technology Sydney (UTS)

Dr. Claudia Virdun
Senior Research Fellow
Queensland University of Technology (QUT)





Prof. Jane Phillips
Head of School of Nursing
Queensland University of Technology (QUT)


 

The study described in this piece has been published in an article: Luckett T, Virdun C, Rao A, Daly L, Hackl N, Willems A, et al. Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study. Ann Palliat Med. 2022.

You can read more about the larger project on PREMs in a report downloadable from the Bureau of Health Information’s (BHI) website at https://www.bhi.nsw.gov.au/BHI_reports/patient_survey_results/palliative-and-end-of-life-care-experiences.