Abstract

Skin reaction is a common side-effect of radiotherapy and often only assessed as clinician-reported outcome (CRO). The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). A further aim was to explore patients' experiences of the skin reactions. Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treatment among 253 patients with primary brain tumour who underwent PBT. PRO skin reactions were assessed with the RSAS and CRO according to the RTOG scale. Fleiss' kappa was performed to measure the inter-rater agreement of the assessments of skin reactions. The results showed a discrepancy between PRO and CRO acute skin reactions. Radiation dose was associated with increased skin reactions, but no correlations were seen for age, gender, education, occupation, other treatment or smoking. There was a poor agreement between patients and clinicians (κ=-0.016) one week after the start of PBT, poor (κ=-0.045) to (κ=0.396) moderate agreement at mid treatment and poor (κ=-0.010) to (κ=0.296) moderate agreement at end of treatment. Generally, patients' symptom distress toward skin reactions was low at all time points. The poor agreement between PRO and CRO shows that the patient needs to be involved in assessments of skin reactions for a more complete understanding of skin reactions due to PBT. This may also improve patient experience regarding involvement in their own care.

Highlights

  • Radiotherapy is one of the treatment options for primary brain tu­ mours, either as a supplement to surgery or alone, and upon indication, in combination with systemic therapy [1]

  • The results showed a discrepancy between the patient-reported outcome (PRO) and clinician-reported outcome (CRO) with poor to moderate kappa scores agreement

  • There was a poor agreement between PRO and CRO skin reactions

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Summary

Introduction

Radiotherapy is one of the treatment options for primary brain tu­ mours, either as a supplement to surgery or alone, and upon indication, in combination with systemic therapy [1]. The aim was to examine and compare patient-reported outcome (PRO) of skin reactions with CRO for signs of acute skin reactions for patients with primary brain tumour receiving proton beam radiotherapy (PBT). Methods: Acute skin reactions were assessed one week after start of treatment, mid-treatment and end of treat­ ment among 253 patients with primary brain tumour who underwent PBT. Conclusion: The poor agreement between PRO and CRO shows that the patient needs to be involved in assess­ ments of skin reactions for a more complete understanding of skin reactions due to PBT. This may improve patient experience regarding involvement in their own care

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