Workstream 1 (‘measures and training’) was designed to meet objective 1: to refine, validate or test new and existing person-centred outcome measures to assess the main health status and symptoms/concerns of, and services received by, patients and families receiving specialist palliative care (for use in workstreams 3 and 4).
As planned, we undertook full validation of the Integrated Palliative care Outcome Scale (IPOS), which was the key measure of patients’ symptoms and other concerns in workstreams 3 and 4. We also undertook further testing of the palliative Phase of Illness measure, which had limited previous psychometric assessment, mostly of reliability.59 After discussion with our PPI group, we also adapted and tested an experience measure: Views on Care (VoC).
The following other measures adopted for workstreams 3 and 4 already had published validation work (or this work emerged before the commencement of workstream 1):
- the Client Service Receipt Inventory (CSRI),65 including adaption for palliative care66
- the Zarit Caregiver Burden Interview – validity of the short version with 6 items,67 including in advanced illness68
- the Medical Outcomes Study Short Form –12 (+ 4),69 including in advanced disease70
- the Australian-modified Karnofsky Performance Scale (AKPS) – an adapted version of the widely-used Karnofsky Index to measure functional status and activity.71
We also undertook training of all participating sites in the use of the measures for workstreams 3 and 4, as planned.
An added component of workstream 1 – at the request of our PPI group – was a secondary analysis of existing qualitative data to understand the role of uncertainty in assessing the care needs of patients and families with advanced progressive illness.
More details of the measures are available in Appendix 1.
Validation and testing of measures
Validation of the Integrated Palliative care Outcome Scale– cognitive testing
This work has also been published in Schildmann et al.72 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by/4.0/. The text below includes minor additions and formatting changes to the original text.
Aim
Our aim was to explore patients’ views on the IPOS, with a focus on comprehensibility and acceptability, and to subsequently refine the questionnaire.
Methods
We carried out a cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. The IPOS was then refined according to findings. Purposively sampled patients were recruited from four palliative care teams across different settings.
Results
A total of 25 interviews were conducted. Overall, comprehension and acceptability of the IPOS were good. Identified difficulties comprised (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties owing to, for example, the recall period; and (3) layout problems.
Validation of the Integrated Palliative care Outcome Scale: full validation study
This work has also been published in Murtagh et al.73
Aim
Our aim was to validate the IPOS, a measure underpinned by early psychometric development, by evaluating its validity, reliability and responsiveness to change.73
Design
We designed a validation study for both the patient self-report and staff proxy-report versions of the IPOS. We tested construct validity (factor analysis, known-group comparisons and correlational analysis), reliability (internal consistency, agreement and test–retest reliability) and responsiveness (through longitudinal evaluation of change).
Results
We recruited 376 adults receiving palliative care and 161 clinicians from a range of palliative care settings. We confirmed a three-factor structure (physical symptoms, emotional symptoms and communication/practical issues).73 The IPOS showed a strong ability to distinguish between clinically relevant groups; total IPOS and IPOS subscale scores were higher (i.e. reflected more problems) in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1; p < 0.001). Good convergent and discriminant validity was found for hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General.73 The IPOS showed good internal consistency (α = 0.77) and acceptable-to-good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in the form of responsiveness to change was good.
To assess how palliative Phase of Illness related to the other measures
This work has also been published in Mather et al.74
Aims
Our aim was to describe function, symptoms and other palliative care needs according to Phase of Illness, and to consider the strength of associations between these measures and Phase of Illness.
Design and setting
We performed a secondary analysis of patient-level data for a total of 1317 patients in three settings. Function was measured using the AKPS. Pain, other physical problems, psycho-spiritual problems and family and carer support needs were measured using the Palliative Care Problem Severity Scale (https://documents.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow272193.pdf; accessed 21 August 2023).
Results
The AKPS and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in the stable phase [65.9, 95% confidence interval (CI) 63.4 to 68.3] and lowest in the dying phase (16.6, 95% CI 15.3 to 17.8). Mean pain was highest in the unstable phase (1.43, 95% CI 1.36 to 1.51). In multinomial regression, psycho-spiritual problems were not associated with Phase of Illness (χ2 = 2.940, df = 3; p = 0.401). Family and carer support needs were greater in the deteriorating phase than the unstable phase [odds ratio (deteriorating vs. unstable) 1.23, 95% CI 1.01 to 1.49]. Overall, 49% of variance in Phase of Illness is explained by the AKPS and Palliative Care Problem Severity Scale.
A patient experience measure: Views on Care
This work has also been published in Pinto et al.75
Context
When patients face advanced illness, their experience of care is especially important. In palliative care, we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no patient-reported measures of the experience of care. Our PPI group challenged us to consider and address this omission. We derived and tested a new questionnaire, called Views on Care (VoC), to address this gap.
Measure development
After research team, PPI group, and steering group discussions, VoC was derived from four questions selected from St Christopher’s Index of Patient Priorities76 that address patients’ evaluation of changes in experience of palliative services, and quality of life [the quality of life items are adapted from the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire – 15 items measure (EORTC QLQ-C15-PAL), which is well-validated in advanced illness].77 The St Christopher’s Index of Patient Priorities itself was considered too long.
Methods
We conducted a survey to examine patients’ views on care 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. We collected demographic details, plus a patient-reported survey at baseline and follow-up. We reported VoC at follow-up, and change in health status (measured using the IPOS) between baseline and follow-up. Descriptive statistics characterise sample demographics and VoC responses, and the chi-squared statistic tests the association between VoC scores and IPOS change scores. IBM SPSS Statistics version 22 (IBM Corporation, Armonk, NY, USA) was used throughout. Ethics approval was obtained from the Dulwich National Research Ethics Committee (REC), London, UK (reference number 124991).
Results
A total of 212 participants were recruited, with a mean age of 65.84 years [standard deviation (SD) 13.5 years]; 137 participants completed both baseline and follow-up surveys. Responses to VoC items 1, 3 and 4 were reasonably normally distributed. Responses to VoC item 2 were positively skewed with most participants indicating that palliative care was giving positive benefit. Participants reporting that ‘things had got better’ (item 1) were more likely to have improved overall outcomes (reduction in IPOS total score: χ2 = 6.057; p = 0.48). With regard to IPOS subscales, there was significant positive association between those reporting that ‘things had got better’ (item 1) and improved outcomes on the IPOS physical symptoms subscale (χ2 = 11.254; p = 0.004). Patients reporting benefit from palliative services (item 2) were more likely to have improved scores on the IPOS communication/practical issues subscale (χ2 4.743; p = 0.051).
Exploring uncertainty in relation to palliative care needs
This section has been reproduced with permission from Etkind et al.78 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by-nc/3.0. The text below includes minor additions and formatting changes to the original text.
Aim
Our aim was to understand patient experiences of uncertainty in advanced illness and develop a typology of patients’ responses and preferences to inform subsequent research in this programme.
Design
We performed a secondary analysis of qualitative interview transcripts.78 Studies were assessed for inclusion and interviews were sampled using maximum variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. Qualitative interviews from six studies were analysed, comprising patients with advanced heart failure, end-stage chronic obstructive pulmonary disease, end-stage renal disease, advanced cancer and advanced liver failure.78
Results
A total of 30 transcripts were analysed. The median patient age was 75 years (range 43–95 years) and 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information preferences, patient priorities and the period of time that patients focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes (see Figure 2).78
FIGURE 2 Two different examples of patient responses to uncertainty, dependent on level of engagement, information preferences and temporal focus. Reproduced with permission from Etkind et al.78 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC 3.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: https://creativecommons.org/licenses/by-nc/3.0. The figure includes minor additions and formatting changes to the original figure. (Figure not reproduced here; see the original article.)