Patient Reported Experience Measures (PREMs) for patients with palliative care needs

An article written by Dr. Claudia Virdun, Professor Jane L. Phillips and Dr. Tim Luckett

Using a Patient Reported Experience Measure (PREM) to guide service appraisal and improvement is gaining significant global momentum, including in Australia. Hearing the perspectives of patients and families is critical to enabling care to be aligned with what matters most to them, and PREMs are one way we can enable this.

There is extensive data about the views of inpatients with palliative care needs and their family members on what they require for optimal care. [1-4] Aligning a PREM to areas noted to be of importance for patients and families is important in ensuring the tools we choose can measure what matters for them and thereby inform improvement within such areas. Therefore, our research team chose to search for PREMs available for patients with palliative care needs and their families and assess how each of these aligned to noted areas for optimal care. [5] Given the focus of earlier work identifying domains of importance for quality care (n=14) in the hospital setting, this review also selected tools specifically developed for inpatient use.

Our systematic review found 44 PREMs for palliative care populations (patients and/or families) that varied from 2 questions through to 85. [5] Unfortunately, the reading level of many was higher than the grade 8 that is generally recommended for health information. Arguably, reading levels should be even lower for people with palliative care needs because they may have varied cognitive limitations due to their illness and medication use. [6] Mapping each PREM to noted areas of importance found they ranged from between 1 and 11 of the 14 potential domains previously identified as being important to inpatients with palliative care needs.

While this review confirms the availability of relevant PREMS aligned to noted areas for optimal inpatient palliative care, the next challenge is to embed PREMs in practice. Currently, we are working on a study where we have collected over 300 PREMs from inpatients with palliative care needs. Our sense is that PREM data is powerful and important and perhaps the act itself of administering a survey aligned to areas of care that matter for this patient population brings some comfort. We have now administered many PREM surveys with patients who are unwell and within an acute admission. Patients are well able to decline participation if they want to. This week I approached a man who completed a PREM for our study 2 weeks ago. When I went to see him again, he had significantly deteriorated and was now dying. He saw me and with a big smile said "It is the survey girl! Come and sit and let’s chat". He was too unwell to complete the survey that day but his son said, "Dad hasn’t been that animated all day - what is it about your survey?". This made me reflect and wonder what it was. There are no doubt a number of factors, but the method of survey administration is one that is critical for us to get right for this population. I worry that automated electronic PREMs for people with palliative care needs removes the human element of listening to people’s views about care quality and how we can improve. Assisting the completion of a simple survey seems important for people with palliative care needs, and although requires resourcing, is important to think through carefully. It is also critical to ensure this vulnerable population feels safe in their provision of feedback and we have done this by ensuring anonymity for all respondents. The impact of this approach means feedback doesn’t impact immediate clinical care provision and ensuring patients and families understand this is vital.

Just yesterday I supported the survey completion for 2 female inpatients in a 4-bed bay in a general medical ward, both screened to be in the last few months of life. Interestingly, they completed the PREM with very different responses but this commenced a discussion between the two of them (as they heard each other’s responses through the blue curtains) about what made them feel cared for. I left with the two patients talking and laughing about the aspects of care that helped them at this difficult time of their lives. This made me reflect on the fact this PREM completion enabled a connection for these two patients. Finally, in recent days we left a PREM with a carer of a patient dying from a glioblastoma. She wrote on every possible space on the form (back and front) providing feedback on how care could be improved from her perspective – she clearly wanted a voice and noted very practical ideas for change.

Given the complexity of implementing PREMS, the ongoing focus for future work is to determine what tool is best suited for each service context and how to best administer these. In addition, ensuring this data is used for meaningful feedback and charged to drive actionable change at local, organisational, jurisdictional, and national levels is fundamental if this work is to be of value for patients, families, and clinicians alike.

References

1. Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J. Hospital patients' perspectives on what is essential to enable optimal palliative care: A qualitative study. Palliat Med. 2020 Dec;34(10):1402-1415. doi: 10.1177/0269216320947570. Epub 2020 Aug 28.
2. Virdun C, Luckett T, Davidson PM, Lorenz K, Phillips J. Generating key practice points that enable optimal palliative care in acute hospitals: Results from the OPAL project's mid-point meta-inference. Int J Nurs Stud Adv 2021 Nov;3:100035. doi: 10.1016/j.ijnsa.2021.100035
3. Virdun C, Luckett T, Davidson PM, Phillips J. Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015 Oct;29(9):774-96. doi: 10.1177/0269216315583032. Epub 2015 Apr 28.
4. Virdun C, Luckett T, Lorenz K, Davidson PM, Phillips J. Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med. 2017 Jul;31(7):587-601. doi: 10.1177/0269216316673547. Epub 2016 Dec 8.
5. Virdun C, Garcia M, Phillips JL, Luckett T. Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review. Palliat Med. 2023 Apr 24:2692163231169319. doi: 10.1177/02692163231169319. Epub ahead of print.
6. Luckett T, Virdun C, Rao A, Daly L, Hackl N, Willems A, Phillips JL. Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study. Ann Palliat Med. 2022 Jul;11(7):2275-2284. doi: 10.21037/apm-22-9. Epub 2022 Apr 7.

Claudia Virdun
Senior Research Fellow
Cancer and Palliative Care Outcomes Centre | Centre for Healthcare Transformation
School of Nursing | Faculty of Health,
Queensland University of Technology (QUT)

 

Professor Jane L. Phillips
Head, School of Nursing, Faculty of Health,
Queensland University of Technology;
Emeritus Professor Palliative Nursing,
IMPACCT, Faculty of Health,
University of Technology Sydney (UTS)
 

Dr. Tim Luckett
Senior Lecturer
IMPACCT, Faculty of Health,
University of Technology Sydney (UTS)