Evaluation of skin reactions during proton beam radiotherapy - Patient-reported versus clinician-reported.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Managing an altered social context-Patients experiences of staying away from home while undergoing proton beam therapy.

Aim: To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy. Design: A descriptive, qualitative cross-sectional interview study. Methods: Nineteen patients were interviewed between December 2015-August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed. Results: Participants made adjustments to achieve control and well-being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity. Conclusion: It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well-being for both patients and their relatives.

Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members.

OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample. METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden. RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61). SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.

Family sense of coherence and its associations with hope, anxiety and symptoms of depression in persons with cancer in palliative phase and their family members: A cross-sectional study.

BACKGROUND: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members. AIM: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members. DESIGN: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression. SETTING/PARTICIPANTS: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden. RESULTS: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members. CONCLUSION: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.