Regularly collecting quality of life (QoL) information from palliative care patients and relatives using a numerical diary is feasible and can help improve care, according to a study. The study tested a questionnaire measuring physical, psychological, social, and spiritual QoL domains in 105 patients and relatives in four hospices. Comparing three QoL outcome indicators across hospices showed collecting data for over six months allows for meaningful analysis. While the pilot informed improvements, more research with more patients and hospices is needed to understand QoL differences between facilities and how case mix factors influence scores.

1. Towards continuous outcome measurement
in palliative care
Is it feasible to collect ‘quality of life’ (QoL) outcomes from palliative care patients and relatives and use
these for safety and quality improvement in hospice care?
Saskia Teunissen (professor Hospice Care), Pieter ten Have (researcher), Jolanda van der Heide (project leader),
Marion van den Hurk (senior researcher), Robbert Huijsman (senior manager Quality and Innovation/professor
Management and Organisation of Elderly Care)
Measure QoL with a diary, easy to understand and applicable in daily
practice in hospices
Next steps
In a multidisciplinary group of health care professionals and researchers we developed a questionnaire to measure
outcomes of palliative care in a scientific and practically useful way. The questionnaire is a multidimensional diary
of symptoms and needs with numerical scales. Physical and psychological items were validated and sensitive for
patients in palliative care. Specific wishes and priorities can be added by the patient.
The questionnaire consists of the Utrecht Symptom Diary
(Teunissen et al., 2007, de Nijs et al., 2011) with additional questions:
• questions in the social and spiritual domain;
• questions for the relatives about their QoL and the way they experienced the way his/her dear one died;
• several case mix variables.
We tested the questionnaire in 105 patients and 44 relatives cared for in four hospicefacilities.
Nurses asked the patients twice a week to fill out the questionnaire.
Five weeks after a patient died the relative was sent a questionnaire.
Focus: three ways of determining QoL-outcomes of
palliative patients
Results: comparing Qol-outcomes
In the analysis we focussed on three outcome indicators for palliative patients and
one for relatives:
• Average QoL-score of patients: QoL-scores from all patients are averaged by
patient, and then averaged by organisation.
• Average QoL-score in the last two weeks of patients’ life: QoL-scores of the last
two weeks of patients that died, are averaged by patient and then by organisation.
• Percentage of patients without relevant worsening of QoL: We counted the
patients with and without a bad period (at least 3 days with a QoL-score below 6
on a scale of 0-10) and calculated a percentage for each organisation.
• Average QoL-score of relatives: QoL-scores from all relatives are averaged by
relative, and then averaged by organisation.
Figure 1: Three outcome indicators of QoL of palliative patients
The pilot showed that routine data collection on QoL must be done for more then six
months for meaningful analyses. After six months we started to compare results of
hospices. Further research with more data is needed to test confounding factors and
to understand differences between hospices.
Figure 2: Pilot results per outcome indicator
Outcome indicators
A dialogue about QoL
improves daily palliative
care
Quality of Life of palliative care patients
patient reported outcomes overall and in four domains:
physical, psychological, social and spiritual and an overall
scale for (un)wellbeing
Quality of Life of relatives
overall and the way his/her dear one died, and
experienced support by the health care professional
Regularly collecting QoL-information in
vulnerable patients is feasible with a
numerical diary after training of hospice
staff. Health care professionals
experienced that patient reported
outcome questionnaires (PROMS) help
to identify more needs and priorities.
Collecting scores in the four domains
helps professionals to understand
overall QoL-scores. This information
contributes to fit the daily palliative care
to individual needs.
In collaboration with: The hospices and hospitals which participated in a pilot,
Frederique van Duuren (program leader at Achmea), Niels Hagenaars (senior advisor
at Gupta Strategists).
Contact details: jolanda.van.der.heide@achmea.nl
s.teunissen@hospicedemeter.nl
robbert.huijsman@achmea.nl
Testing the questionnaire in
a pilot study in 4 hospices
Further research in more patients and hospices is needed to
determine whether differences in QoL are a true signal of
differences in quality of care. An important first step is further
research into case mix variables which influence the QoL-scores.
This is needed to compare scores between hospices regardless
of differences in patient populations.
After a pilot in four hospices we started broadening outcome
measurement in palliative care in hospitals and another 20
hospices. In this next phase we take into account the lessons
from the pilot study:
• add a questionnaire for health care professionals to use when
a patient is incapable to fill in a questionnaire;
• improve the way of questioning the relatives;
• improve the way of questioning the spiritual domain.