Table 6 measures included in final review

1.The Palliative Nursing Quality Measure :

Cameron and Johnston [40]

Innovative; based on its unique foci on the key characteristics of the specialist nurse working in palliative care. This has not been an area attended to by other existing PROMs.

Face and content validity were strengthened by input from the expert panels.

Findings from the advisory group and panel feedback phases also suggest that the questionnaire is relevant to measure the quality of palliative care as provided by a specialist nurse, is administratively manageable, and appropriate for patients with palliative care needs, even when frailty is advanced.

A strength of this measure is that it does accommodate some free text input from participants, which means that a larger level of detail can be collected.

Only reports on face and content validity which partly accounted for it being the lowest-scoring measure based on our tool’s critical appraisal at Further testing around other validity aspects, such as criterion and construct are needed. In addition, reliability testing was also absent.

53.3% (8 out of 15).

2. Patient Dignity Inventory (PDI)

Chochinov et a [41]

This is a 25-item tool, which is designed to assess dignity-related distress amongst people with end of life care needs. The PDI items were developed from the themes and subthemes encapsulated within Chochinov and colleagues’ Dignity Mode

PDI as a self-report instrument that can be completed with assistance if necessary, that addresses appropriate issues across the physical, psychosocial, existential, and spiritual aspects of the patient’s experience.

The study described in the current article explores the psychometric testing of the 25-item PDI amongst Canadian and Australian patient participants with end of life care needs, across three sites (n = 190). Various areas of psychometric testing were carried out.

The authors highlight that the PDI demonstrates strong face validity, and is adaptable to a range of care settings, such as community based locations as well as palliative care hospital units

The limitations addressed by the authors include the fact that the PDI should be robustly researched amongst younger patient populations and those with non-cancer conditions, since this current study consisted of largely older people with cancer illnesses.

93.3%/ (14 out of 15)

3. Quality of Communication Questionnaire Assessing Communication about End-of-Life Care

Engleberg et al.’s [47]

The QOC instrument measures patients’ perspectives regarding satisfaction with health professionals communication (there are separate questionnaires for physicians and nurses) during end of life care. It was originally a four –item questionnaire [51, 52], but was extended to 17 due to considerations of ceiling effects.

One of only measures to specifically measure health care communication

Family reported data did not attain statistical significance as part of cross-respondent validation

further testing is required. Sample selectivity techniques meant that participants were drawn from a subset of possible participants, and therefore it is not clear whether findings are applicable to those who did not participate, as well as, the wider population. The samples only covered two end of life care arenas: people receiving hospice care and people with COPD, which may restrict the appropriateness of the instrument to other people with end of life needs. Moreover, validity testing was not carried out on questionnaire items which were prospectively selected. Finally, the scales were not subject to some aspects of reliability testing, such as test-retest and responsiveness

4. Jacelon Attributed Dignity Scale

Jacelon and Choi [42]

This is an instrument dedicated to measuring attributed dignity amongst older adults in the community. The authors suggest that attributed dignity is a form of dignity, which involves ideas around self-value and perceived value from others. This concept of dignity was developed by Jacelon [53, 54] based on a study looking at older adults in hospital. The measure assesses the individual’s reflections on the attributed dignity that they did/did not experience in the previous week

Is a short measure using a consistent positive scoring approach, with higher scores equating to perceived greater attributed dignity

Further testing is required to establish whether the modified response format is feasible. In addition psychometric testing falls short of exploring inter-rater reliability, content validity, and criterion validity. Inability at this stage to be used clinically beyond research studies.

60.0% (9 out of 15)

5. The Measurement Instrument for Dignity Amsterdam- for Long-Term Care facilities

Oosterveld-Vlug et al. [43]

The MIDAM-LTC is an instrument which assesses the extent to which aspects of a person’s life influences their sense of personal dignity

MIDAM-LTC enables dignity to be assessed more appropriately in long-term care settings, and for offering guidance to improve the dignity-conserving practice of caregivers. Modifying the measure to a 31 item tool was perceived by authors to improve feasibility whilst retaining comprehensiveness

The MIDAM-LTC tool is unique by acknowledging that personal dignity is particularly vulnerable to being diminished in long-term care facilities, and therefore provides a useful means of assessing this amongst residents who are institutionalised.

Some key aspects of reliability testing were missing including internal consistency and inter-rater reliability

73.3% (11 out of 15).

6. Problems and Needs in Palliative care questionnaire

Osse et al. [46]

Clinical tool that enables needs assessment in palliative care.

The PNPC-sv is organised into different dimensions which are: Daily activities; Physical symptoms; Autonomy; Social issues; Psychological issues; Spiritual issues; Financial problems; and Need of information

Holistic tool covering a variety of domains.

There are gaps in the reliability testing administered, including test-retest reliability and inter-related reliability.

There is also more research required to ascertain how implementation into the clinical setting should take place.

70.6% (12 out of 17).

7. Missoula-VITAS Quality of Life Index

Schwartz et al. [49]

A tool aimed at assessing the quality of life of people with palliative and end of life needs. The tool was originally developed by Byock and Merriman [55], as a 25-item measure, which focused on how patients adapted to physical and functional deterioration. It was structured around five quality of life dimensions (symptom control, function, interpersonal issues, well-being, and transcendence).

The tool enabled opportunities to arise to discuss psychosocial and spiritual issues, which may not otherwise voluntarily emerge. The tool also enabled holistic, collaborative, person-centred care to materialise.

Improvements were also identified, including that organisational infrastructure support is required to ensure that the MVQOLI-R is used effectively, and that confidence would only improve with repeated use and possible training for staff. Moreover, as with the psychometric study, some items were found to be too complex for patients.

80.0%; 12 out of 15).

8. Quality Care Questionnaire-End of Life

Yun et al. [27]

16-item measure that is relevant for patients with terminal illness. The questionnaire has undergone scrupulous development via a four-phase process, which has involved item generation and reduction, construction, pilot testing, and field testing

Good psychometric testing standards

Reliability and validity testing strengthens the conviction that QLQ-EOL is appropriate for use with patients who have terminal cancer.

Cross-cultural studies may be needed to ascertain whether the QLQ-EOL is relevant for patients from other countries and cultures

However, the authors also highlight that findings may be biased, and restricted in terms of generalisability.

(73.3%; 11 out of 15)