Background
Proton beam therapy
Patient reported outcomes and patient reported experiences
The Skandion clinic
Startup of the The ProtonCare Study Group (PCSG)
Method
Result
Assumptions | Resources and challenges | Activities | Outputs | Outcomes |
---|---|---|---|---|
Lack of clinical data demonstrating superior outcomes in the use of PBT over CRT Lack of evidence regarding patient reported toxicity and patients experiences related to PBT, hence a need for research based on PROs Evaluation of patients´ satisfaction with care is central when starting up a novel clinic |
Resources
- The establishment of the PCSG and as a result a commission from the Skandion management to conduct caring research in conjunction with PBT
Constraints
- Lack of infrastructure for research at the Skandion clinic
Challenges
- Staffing - Funding - Potential study participants geographically spread - Limited number of patients referred for PBT - Diagnosis related study protocols not completed from startup but evolving continuously - Evolving data collection implementation for patients treated with PBT, in concordance with each diagnose based protocol group - Data collection implementation for patients treated with CRT | Convene PCSG meets Attend diagnosis study protocol meets Applying for funding for support of the PCSG Applying for funding to support PCSG research projects Hire research nurses and doctoral students Setting up a structure for data collection Creation of a network of coordinators for patient inclusion to PCSG research project Convene and host national meeting for coordinators from the Skandion clinic and participating regional radiotherapy departments Nordic collaboration on patient perspective in PBT | Extent of external funding to support PCSG meets Extent of external funding for research projects Database for collected data Dissemination of research findings by publications, communication of findings and presentation at national and international conferences Ongoing and continuous dialogue with the staff at the Skandion clinic to develop the care |
Short term
- Development of appropriate, relevant, and sustainable research network covering participating regions and radiotherapy departments - Granted funding
Intermediate
- Scientific publications - Granted funding - Use of the research findings in the quality improvement process of the care at the Skandion clinic - An increase in the number of research projects of PBT based on PROs
Long-term
- Knowledge about health outcomes of patients considered for PBT will improve - Findings will serve as base for clinical decisions when patients are referred to PBT versus CRT |
Step 1 – Agreeing on the mission and describing assumptions
Step 2 – Identifying and describing resources, challenges, and activities
Resources
Challenges
Funding and staffing
Collaboration with evolving study protocol groups
Recruitment of study participants
Data collection
Activities
Step 3 – Identifying outputs, outcomes, and outcome indicators
Outputs
Outcomes
Short-term outcomes
Intermediate outcomes
Topic | Study design | Respondent | Scientific publication |
---|---|---|---|
Quality of care and HRQoL during PBT | Prospective, longitudinal, descriptive, quantitative study | Patients treated with PBT for brain tumor (n = 186) | Langegård et al. 2018 [35] |
Experiences of symptom management during PBT | Prospective, longitudinal, qualitative study | Patients treated with PBT for brain tumor (n = 22) | Langegård et al. 2019 [36] |
Symptom cluster during PBT | Prospective, longitudinal, explorative, quantitative study | Patients treated with PBT for brain tumor (n = 187) | Langegård et al. 2019 [37] |
Development and initial psychometric evaluation of a radiotherapy-related symptom assessment tool, based on data from patients with brain tumours undergoing proton beam therapy | Prospective, longitudinal and quantitative design | Patients treated with PBT for brain tumor (n = 234) | Langegård et al. 2020 [30] |
Experiences of living away from home when treated with PBT | Prospective, longitudinal, qualitative study | Patients treated with PBT for brain tumor (n = 22) | Möllerberg et al. 2020 [39] |
Patients’ perspective in the context of proton beam therapy: summary of a Nordic workshop | Summary of workshop | Ohlsson-Nevo et al. 2020 [32] | |
Symptom experiences and HRQoL | Prospective, longitudinal, explorative, quantitative study | Patients treated with PBT for brain tumor (n = 266) | Langegård et al. 2021 [38] |
Evaluations of skin reactions during PBT – comparing patient-reported vs clinician reported outcomes | Retrospective, quantitative study | Patients treated with PBT for brain tumor (n = 253) | Möllerberg et al. 2021 [40] |