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Identifying unmet supportive care needs: Evaluating Region Skåne Serious Illness Database and developing an R-based script for per-patient illness trajectory analysis

Josefsson, Hanna LU (2025) MPHN40 20251
Social Medicine and Global Health
Abstract
Introduction
The care needs of cancer patients can vary greatly across the course of their serious illness. Despite national efforts to promote supportive care – early integrated palliative care – in Sweden, systemic barriers such as ambiguous terminology and stigma complicate this development. Region Skåne Serious Illness Database (RSSID) is being developed to collect large-cohort data for conducting per-patient illness trajectory analysis, identifying unmet supportive care needs, and guiding palliative care development in Sweden.

Aim
The first aim of this thesis project was to evaluate RSSID’s suitability for identifying gaps in care by comparing the dates of key clinical events to those in patient charts. The second aim was to... (More)
Introduction
The care needs of cancer patients can vary greatly across the course of their serious illness. Despite national efforts to promote supportive care – early integrated palliative care – in Sweden, systemic barriers such as ambiguous terminology and stigma complicate this development. Region Skåne Serious Illness Database (RSSID) is being developed to collect large-cohort data for conducting per-patient illness trajectory analysis, identifying unmet supportive care needs, and guiding palliative care development in Sweden.

Aim
The first aim of this thesis project was to evaluate RSSID’s suitability for identifying gaps in care by comparing the dates of key clinical events to those in patient charts. The second aim was to develop an R-based script for per-patient illness trajectory analysis to improve the approach’s accessibility and reproducibility for similar research.

Methods
Three key clinical events were included in the comparison between RSSID and the charts: death, first cancer diagnosis, and last treatment limitation. An R-based script was developed to conduct per-patient illness trajectory analysis and visualize key clinical events for a random subset of the study population (N=35,209 cancer patients in Skåne, Sweden, who died within one year of their last cancer diagnosis).

Results
The evaluation showed strong to moderate alignment between RSSID and chart data. Death dates matched exactly (100.0%), while cancer diagnosis and treatment limitation dates matched in 63.5% and 37.8% of cases, improving to 76.0% and 51.4% within a ±60-day interval. The R-based script was effectively used to conduct per-patient illness trajectory analysis.

Conclusions
Despite some limitations, RSSID offers structured large-cohort data with potential to identify gaps in care. The developed R-based script provides an accessible and reproducible method of conducting per-patient illness trajectory analysis. Together, these tools can visualize unmet supportive care needs, support future research in serious illness care, and guide the development of Swedish palliative care. (Less)
Popular Abstract
The care needs of cancer patients can vary greatly throughout the course of their serious illness. Palliative care aims to relieve symptoms and provide support to such patients near the end of life. Early integration of palliative care is called supportive care, provided months or even years before death to improve patients’ quality of life while reducing the burden on the healthcare system. Despite national efforts to promote supportive care in Sweden, its development has been relatively limited.

Recognizing when care needs change is important to ensure that care matches the varying situations of seriously ill patients. To help with this, the Region Skåne Serious Illness Database is being developed to collect health information from a... (More)
The care needs of cancer patients can vary greatly throughout the course of their serious illness. Palliative care aims to relieve symptoms and provide support to such patients near the end of life. Early integration of palliative care is called supportive care, provided months or even years before death to improve patients’ quality of life while reducing the burden on the healthcare system. Despite national efforts to promote supportive care in Sweden, its development has been relatively limited.

Recognizing when care needs change is important to ensure that care matches the varying situations of seriously ill patients. To help with this, the Region Skåne Serious Illness Database is being developed to collect health information from a large number of these patients. The aim is to identify unmet supportive care needs – cases where patients could have benefitted from supportive care but never received it. This is important in developing Swedish palliative care.

This project had two parts. First, the Region Skåne Serious Illness Database was evaluated by comparing its dates of important healthcare events with corresponding dates in patients’ medical records. This comparison showed strong to moderate agreement. Second, a script was developed in the statistical program R, commonly used in medical research. This script contains computer code for conducting per-patient illness trajectory analysis: an approach that uses timelines to visualize the progression of patients’ care.

The results suggest that while the Region Skåne Serious Illness Database shares some common limitations of large datasets, it has the potential to identify gaps in care for seriously ill cancer patients. The script developed in R can make per-patient illness trajectory analysis more accessible and replicable for researchers in the field. Together, the database and script can highlight unmet supportive care needs and support the continued improvement of palliative care in Sweden. (Less)
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author
Josefsson, Hanna LU
supervisor
organization
course
MPHN40 20251
year
type
H2 - Master's Degree (Two Years)
subject
keywords
supportive care, palliative care, end-of-life care, serious illness, illness trajectory, patient centered, illness experience
language
English
id
9204242
date added to LUP
2025-09-17 19:15:37
date last changed
2025-09-17 19:15:40
@misc{9204242,
  abstract     = {{Introduction 
The care needs of cancer patients can vary greatly across the course of their serious illness. Despite national efforts to promote supportive care – early integrated palliative care – in Sweden, systemic barriers such as ambiguous terminology and stigma complicate this development. Region Skåne Serious Illness Database (RSSID) is being developed to collect large-cohort data for conducting per-patient illness trajectory analysis, identifying unmet supportive care needs, and guiding palliative care development in Sweden.

Aim 
The first aim of this thesis project was to evaluate RSSID’s suitability for identifying gaps in care by comparing the dates of key clinical events to those in patient charts. The second aim was to develop an R-based script for per-patient illness trajectory analysis to improve the approach’s accessibility and reproducibility for similar research.

Methods 
Three key clinical events were included in the comparison between RSSID and the charts: death, first cancer diagnosis, and last treatment limitation. An R-based script was developed to conduct per-patient illness trajectory analysis and visualize key clinical events for a random subset of the study population (N=35,209 cancer patients in Skåne, Sweden, who died within one year of their last cancer diagnosis).

Results 
The evaluation showed strong to moderate alignment between RSSID and chart data. Death dates matched exactly (100.0%), while cancer diagnosis and treatment limitation dates matched in 63.5% and 37.8% of cases, improving to 76.0% and 51.4% within a ±60-day interval. The R-based script was effectively used to conduct per-patient illness trajectory analysis.

Conclusions 
Despite some limitations, RSSID offers structured large-cohort data with potential to identify gaps in care. The developed R-based script provides an accessible and reproducible method of conducting per-patient illness trajectory analysis. Together, these tools can visualize unmet supportive care needs, support future research in serious illness care, and guide the development of Swedish palliative care.}},
  author       = {{Josefsson, Hanna}},
  language     = {{eng}},
  note         = {{Student Paper}},
  title        = {{Identifying unmet supportive care needs: Evaluating Region Skåne Serious Illness Database and developing an R-based script for per-patient illness trajectory analysis}},
  year         = {{2025}},
}