Participants
de Nijs E
Echteld MA
Vrehen H
Hesselmann G
Uitdehaag M
de Graeff A.
Teunissen S.
Overview
Introduction:
The Utrecht SymptomDiary (USD) is a modified version of the Edmonton
Symptom Assessment System. USD includes 13 scales (0-10) for
symptoms based on our systematic review of symptom prevalence in
advanced cancer patients. Hospital and hospice patients give their
symptom scores daily as expression of their degree of symptom
burden. USD is the standard monitoring instrument for palliative
care patients participating in studies of the XX Center of Knowledge
in Palliative Care and needs to be validated.
Method:
The USD was tested on reliability and face validity for cancer
patients in curative and palliative patients in the in- and
outpatient clinic of a medical oncology department (university
hospital), a palliative care unit (general hospital) and an academic
hospice. Feasibility was tested by questionnaires for doctors,
nurses and patients based on criteria of Burnes&Groves. Face
validity was assessed through qualitative interviews with experts
and users.
Results:
Quantative analysis of the validation study (n= 100) showed that 85%
of patients didn’t need assistance scoring symptoms in USD. USD
symptoms were found representative by 92% of professionals. USD was
reviewed supportive in daily practice of symptom management by 83%.
By these results USD was decided as a usable instrument for daily
practice. But, qualitative analysis (n=25) asked for adjustments.
I.e. not all patients understood ‘constipation’ and we changed the
label in ‘having stool’. The general question related to all scales
‘what is your degree of burden’ was reflected as complicated.
Therefore questions were changed and separated in ‘do you feel’ (ie.
fatigued) and ‘do you have’ (ie. pain).
Conclusion:
Reliability and face validity of USD is acceptable for cancer
patients in hospital and hospice settings. USD is implemented as
best practice in multiple care settings in the region and further
quantitative and qualitative analysis is conducted to test the USD
on content and criterion validity.