poster palliatieve zorg

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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: [email protected] [email protected] [email protected] 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.

Transcript of poster palliatieve zorg

Page 1: poster palliatieve zorg

Towards continuous outcome measurement in palliative careIs 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: [email protected] [email protected] [email protected]

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.