Abstract
The number of patients diagnosed with cancer increases. At the same time cancer
patients live longer due to earlier diagnosis and more effective therapies. During
the course of their disease, patients experience many disease and/or treatmentrelated symptoms that impact health-related quality of life and daily functioning.
Symptoms and their impact can be overlooked and/or underestimated by healthcare
professionals. If symptoms remain under-recognized, physical, mental, existential
and social functioning is affected and opportunities for diagnosis and management
of symptoms may be missed. Patient-reported outcome measurement tools (PROMs)
can be used to assess and monitor symptoms and symptom burden.
The Utrecht Symptom Diary is a Dutch translation and modified version of the
Edmonton Symptom Assessment System (ESAS) which is a worldwide frequently
used and validated PROM in cancer patients. In 2003, the USD was developed for daily
assessment and monitoring of symptoms of cancer and/or treatment-related physical
and mental symptoms. It contains a total of 12 items – lack of appetite, nausea,
abnormal stool, dysphagia, dry mouth, pain, sleeping problems, shortness of breath,
fatigue, anxiety, depressed mood and overall well-being. Symptoms are scored on
a zero-to-ten numeric rating scale (NRS), with higher values indicating increasing
intensity. Moreover, patients are invited to add symptoms they experience and are
not listed on the USD and are asked to prioritize symptoms which need attention in
the patient-doctor-nurse conversation first from their personal perspective. Since
2007 treatment and disease specific modules of the USD have been developed. From
2015 the USD became part of the hospital electronic medical files.
Over the last years the USD has been implemented in daily practice in other
departments of the UMC Utrecht as well as in other (university)hospitals, general
practices and hospices in the Netherlands. Moreover, use of the USD is recommended
by the Netherlands Quality Framework for Palliative Care.
This thesis describes the validation of the USD and patient-reported symptoms
through the use of the USD in different patient groups and settings.
The studies described in this thesis show the validity of the USD on content, criterion
and construct level. In collaboration with the patient, the use of the USD gave
insight into symptoms and their impact on quality of life. This insight is essential to
provide personalized, supportive care during treatment with targeted therapies and
immunotherapy in daily oncology practice.
patients live longer due to earlier diagnosis and more effective therapies. During
the course of their disease, patients experience many disease and/or treatmentrelated symptoms that impact health-related quality of life and daily functioning.
Symptoms and their impact can be overlooked and/or underestimated by healthcare
professionals. If symptoms remain under-recognized, physical, mental, existential
and social functioning is affected and opportunities for diagnosis and management
of symptoms may be missed. Patient-reported outcome measurement tools (PROMs)
can be used to assess and monitor symptoms and symptom burden.
The Utrecht Symptom Diary is a Dutch translation and modified version of the
Edmonton Symptom Assessment System (ESAS) which is a worldwide frequently
used and validated PROM in cancer patients. In 2003, the USD was developed for daily
assessment and monitoring of symptoms of cancer and/or treatment-related physical
and mental symptoms. It contains a total of 12 items – lack of appetite, nausea,
abnormal stool, dysphagia, dry mouth, pain, sleeping problems, shortness of breath,
fatigue, anxiety, depressed mood and overall well-being. Symptoms are scored on
a zero-to-ten numeric rating scale (NRS), with higher values indicating increasing
intensity. Moreover, patients are invited to add symptoms they experience and are
not listed on the USD and are asked to prioritize symptoms which need attention in
the patient-doctor-nurse conversation first from their personal perspective. Since
2007 treatment and disease specific modules of the USD have been developed. From
2015 the USD became part of the hospital electronic medical files.
Over the last years the USD has been implemented in daily practice in other
departments of the UMC Utrecht as well as in other (university)hospitals, general
practices and hospices in the Netherlands. Moreover, use of the USD is recommended
by the Netherlands Quality Framework for Palliative Care.
This thesis describes the validation of the USD and patient-reported symptoms
through the use of the USD in different patient groups and settings.
The studies described in this thesis show the validity of the USD on content, criterion
and construct level. In collaboration with the patient, the use of the USD gave
insight into symptoms and their impact on quality of life. This insight is essential to
provide personalized, supportive care during treatment with targeted therapies and
immunotherapy in daily oncology practice.
| Original language | English |
|---|---|
| Awarding Institution |
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| Supervisors/Advisors |
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| Award date | 11 Jun 2024 |
| Publisher | |
| Print ISBNs | 978-90-834311-1-6 |
| DOIs | |
| Publication status | Published - 11 Jun 2024 |
Keywords
- Cancer
- Immunotherapy
- Oncology Nursing
- Patient-reported symptoms
- Patient-reported outcome measurement
- Supportive Care
- Targeted therapy
- Utrecht Symptom Diary
- Symptom burden