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BACKGROUND: This study assessed the cost-effectiveness of proton beam therapy (PBT) compared to conventional radiotherapy (CRT) for treating patients with brain tumors in Sweden. METHODS: Data from a longitudinal non-randomized study performed between 2015 and 2020 was used, and included adult patients with brain tumors, followed during treatment and through a one-year follow-up. Clinical and demographic data were sourced from the longitudinal study and linked to Swedish national registers to get information on healthcare resource use. A cost-utility framework was used to evaluate the cost-effectiveness of PBT vs. CRT. Patients in PBT group (n = 310) were matched with patients in CRT group (n = 40) on relevant observables using propensity score matching with replacement. Costs were estimated from a healthcare perspective and included costs related to inpatient and specialized outpatient care, and prescribed medications. The health outcome was quality-adjusted life-years (QALYs), derived from the EORTC-QLQ-C30. Generalized linear models (GLM) and two-part models were used to estimate differences in costs and QALYs. RESULTS: PBT yielded higher total costs, 14,639 US$, than CRT, 13,308 US$, with a difference of 1,372 US$ (95% CI, -4,914-7,659) over a 58 weeks' time horizon. Further, PBT resulted in non-significantly lower QALYs, 0.746 compared to CRT, 0.774, with a difference of -0.049 (95% CI, -0.195-0.097). The probability of PBT being cost-effective was < 30% at any willingness to pay. CONCLUSIONS: These results suggest that PBT cannot be considered a cost-effective treatment for brain tumours, compared to CRT.

BACKGROUND AND PURPOSE: Since patients with primary brain tumor are expected to become long-term survivors, the prevention of long-term treatment-induced side effects is particularly important. This study aimed to explore whether symptom experience and symptom distress change over five years in adults with primary brain tumors treated with proton therapy. An additional aim was to explore whether symptom experience and symptom distress correlate. MATERIALS AND METHODS: The study had a longitudinal observational design. Adult (≥18 years) patients (n = 170) with primary brain tumors treated with proton therapy were followed over five years. Symptom experience and symptom distress were evaluated using the patient-reported Radiotherapy-Related Symptom Assessment Scale. Data from baseline, 1, 12, and 60 months were analyzed using non-parametric tests. RESULTS: Of the 170 patients, the levels of symptoms and symptom distress were low. Fatigue increased at 1 (p=0.005) and 12 months (p=0.025) and was the most frequent symptom from baseline to 60 months' follow-up. Cognitive impairment increased at 12 (p=0.027) and 60 months (p<0.001) and was the most distressing symptom at 60 months' follow-up. There were significant, moderate to strong, correlations at all time points between symptom experience and symptom distress of fatigue, insomnia, pain, dyspnea, cognitive impairment, worry, anxiety, nausea, sadness, constipation, and skin reactions. CONCLUSION: Symptom experience and symptom distress changed in intensity over time with cognitive impairment as the most distressing symptom at 60 months. Future research should focus on identifying effective interventions aimed at alleviating these symptoms and reducing symptom distress for this vulnerable group of patients.

PURPOSE: The aim of this study was to explore patients' experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. BACKGROUND: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals' preferences. There is a knowledge gap of successful approaches to support patients' participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. METHOD: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. FINDINGS: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors' choice, and feeling selected for treatment. CONCLUSION: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients' preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients' voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provi, Open access funding provided by Kristianstad University.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSup, The project is supported by the Swedish Research Council (grant no. 2019 − 01231), the Swedish Cancer Society (grant no. 20 1014 PjF), the Oncology Department Foundation’s Research Fund in Uppsala (grant no. N/A), and the Swedish state under the agreement between the Swedish government and the county councils, i.e., the ALF agreement (Uppsala County: ALF-941900). Open access funding provided by Uppsala University.

INTRODUCTION: Physical activity (PA) after metabolic and bariatric surgery (MBS) can influence weight loss, health status, and quality of life. Known mediators to participate in PA are enjoyment, self-efficacy, and social support. Little is known about PA behavior in MBS individuals. The aim of this study was to explore levels of PA and the PA mediators enjoyment, self-efficacy, and social support before and after MBS and to investigate changes over time. METHODS: Adults scheduled to undergo MBS were recruited from a Swedish university hospital. Accelerometer-measured and self-reported PA, body weight, and PA mediators were collected at baseline and at 12 to 18 months post-surgery. RESULTS: Among 90 individuals included, 50 completed the follow-up assessment and had valid accelerometer data. Sedentary time (minutes/day) was unchanged, but sedentary time as percentage of wear time decreased significantly from 67.2% to 64.5% (p<0.05). Time spent in light PA and total PA increased significantly from 259.3 to 288.7 min/day (p < 0.05) and from 270.5 to 303.5 min/day (p < 0.01), respectively. Step counts increased significantly from 6013 to 7460 steps/day (p < 0.01). There was a significant increase in self-reported PA, enjoyment, self-efficacy for exercise, and positive social support from family. The increase in PA mediators did not lead to a significant change in time spent in moderate to vigorous PA. CONCLUSION: The increase in PA-mediators was not associated with an increase in moderate to vigorous PA, but the strengthened PA mediators suggest potential for an increase in moderate to vigorous PA in patients undergoing MBS.

PURPOSE: Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving. METHODS: Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed. RESULTS: The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care. CONCLUSION: This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer., Funding agency:Oncology Department Foundations Research Fund in Uppsala (grant number N/a)

PURPOSE: To describe how patients receiving cancer treatment perceive quality of care in the oncological outpatient settings. METHOD: A strategic sample of 20 adult patients with cancer treated in four oncological outpatient settings in four hospitals in Sweden participated in the study. Participants were interviewed using a semi-structured interview guide with open-ended questions. The interviews were audio-recorded, and the transcripts were analysed using a phenomenographic approach. RESULTS: Three descriptive categories emerged from the data: The patient's care is designed to meet individual needs, The patient's dignity is respected, and The patient feels safe and secure with the care. Overall, quality of care in the oncological outpatient setting is perceived as something positive and described in normative terms by the participants. CONCLUSION: The results emphasises that in order to achieve quality of care it is important to the patients that they are able to meet with the same well-educated, professional, caring and sensible health care professionals every time.

BACKGROUND AND OBJECTIVE: Mapping algorithms can be used for estimating quality-adjusted life years (QALYs) when studies apply non-preference-based instruments. In this study, we estimate a regression-based algorithm for mapping between the World Health Organization Disability Assessment Schedule (WHODAS 2.0) and the preference-based instrument SF-6D to obtain preference estimates usable in health economic evaluations. This was done separately for the working and non-working populations, as WHODAS 2.0 discriminates between these groups when estimating scores. METHODS: Using a dataset including 2258 participants from the general Swedish population, we estimated the statistical relationship between SF-6D and WHODAS 2.0. We applied three regression methods, i.e., ordinary least squares (OLS), generalized linear models (GLM), and Tobit, in mapping onto SF-6D from WHODAS 2.0 at the overall-score and domain levels. Root mean squared error (RMSE) and mean absolute error (MAE) were used for validation of the models; R2 was used to assess model fit. RESULTS: The best-performing models for both the working and non-working populations were GLM models with RMSE ranging from 0.084 to 0.088, MAE ranging from 0.068 to 0.071, and R2 ranging from 0.503 to 0.608. When mapping from the WHODAS 2.0 overall score, the preferred model also included sex for both the working and non-working populations. When mapping from the WHODAS 2.0 domain level, the preferred model for the working population included the domains mobility, household activities, work/study activities, and sex. For the non-working population, the domain-level model included the domains mobility, household activities, participation, and education. CONCLUSIONS: It is possible to apply the derived mapping algorithms for health economic evaluations in studies using WHODAS 2.0. As conceptual overlap is incomplete, we recommend using the domain-based algorithms over the overall score. Different algorithms must be applied dependi

BACKGROUND: The World Health Organization Disability Assessment Schedule (WHODAS 2.0) is a generic questionnaire that captures health and disability-related functioning information corresponding to six major life domains: Cognition, Mobility, Self-care, Getting along, Life activities, and Participation. The WHODAS 2.0 is used in a wide range of international clinical and research settings. A psychometric evaluation of WHODAS 2.0, Swedish version, in the general population is lacking, together with national reference data to enable interpretation and comparison. This study aims to evaluate the psychometric properties of the Swedish 36-item version of WHODAS 2.0 and describe the prevalence of disability in a Swedish general population. METHODS: A cross-sectional survey was performed. Internal consistency reliability was assessed with Cronbach's alpha. The construct validity was evaluated with item-total correlation, Pearson's correlation between the WHODAS 2.0 domains and the RAND-36 subscales, analysis of known groups by one-way ANOVA, and analysis of the factor structure by confirmatory factor analysis. RESULTS: Three thousand four hundred and eighty two adults aged 19-103 years (response rate 43%) participated. Significantly higher degrees of disability were reported by the oldest age group (≥ 80 years), adults with a low level of education, and those on sick leave. Cronbach's alpha was from 0.84 to 0.95 for the domain scores and 0.97 for the total score. The item-scale convergent validity was satisfactory, and the item-scale discriminant validity was acceptable except for the item about sexual activity. The data partially supported the factor structure, with borderline fit indices. CONCLUSION: The psychometric properties of the self-administered Swedish 36-item version of the WHODAS 2.0 are comparable to those of other language versions of the instrument. Data of the prevalence of disability in Swedish general population enables normative comparisons of WHODAS 2.0

BACKGROUND: The ProtonCare Study Group (PCSG) was formed with the purpose to develop and implement a framework for evaluation of proton beam therapy (PBT) and the related care at a novel clinic (Skandionkliniken), based on patient reported data. METHOD: A logic model framework was used to describe the process of development and implementation of a structured plan for evaluation of PBT for all diagnoses based on patient reported data. After the mission for the project was determined, meetings with networks and stakeholders were facilitated by PCSG to identify assumptions, resources, challenges, activities, outputs, outcomes, and outcome indicators. RESULT: This paper presents the challenges and accomplishments PCSG made so far. We describe required resources, activities, and accomplished results. The long-term outcomes that were outlined as a result of the process are two; 1) Improved knowledge about health outcomes of patients that are considered for PBT and 2) The findings will serve as a base for clinical decisions when patients are referred for PBT. CONCLUSION: Using the logical model framework proved useful in planning and managing the ProtonCare project. As a result, the work of PCSG has so far resulted in long-lasting outcomes that creates a base for future evaluation of patients' perspective in radiotherapy treatment in general and in PBT especially. Our experiences can be useful for other research groups facing similar challenges. Continuing research on patients´ perspective is a central part in ongoing and future research. Collaboration, cooperation, and coordination between research groups/networks from different disciplines are a significant part of the work aiming to determine the more precise role of PBT in future treatment options.

INTRODUCTION: Breast cancer is the most prevalent cancer among women. The treatment is extensive; in addition to surgery, various combinations of radiation therapy, chemotherapy and antibody and endocrine treatment can be applied. Cancer-related fatigue (CRF) is high in patients with breast cancer, peaking during chemotherapy, but may persist for several years. Physical activity has proven to be effective in reducing CRF in breast cancer rehabilitation, but many patients tend to be less active after the diagnosis. Yoga has a previously demonstrated effect on energy levels and digitally distributed yoga intervention can potentially increase accessibility in pandemic times and facilitate participation for patients susceptible to infection and those living far from organised rehabilitation opportunities. The purpose of this study, Digital Yoga Intervention in Cancer Rehabilitation (DigiYoga CaRe) is to investigate whether a 12-week digitally distributed yoga intervention can reduce CRF and stress, improve health-related quality of life (HRQL) and affect pro-inflammatory and metabolic markers in patients with breast cancer. METHODS AND ANALYSIS: This multicentre study will adopt a randomised controlled design including 240 persons after their breast cancer surgery. They will be randomised to a 12-week digitally distributed yoga intervention or to a control group. The intervention group practice yoga two times a week, one yoga class live-streamed to the patient's computer or mobile device and one prerecorded video class for self-training. The controls receive standardised care, gift cards for flowers and access to yoga video links after the data collection has ended. The primary analysis will be performed following the principle of intention to treat. Data will be collected by questionnaires, blood samples, accelerometers and interviews. ETHICS AND DISSEMINATION: The DigiYoga CaRe study was approved by the Regional Ethical Review Board in Lund. The final results of this, Funding agency:Regional Research Council Mid Sweden RFR- 940296

BACKGROUND: The decision to not convey patients has become common in emergency medical services worldwide. A substantial proportion (12-51%) of the patients seen by emergency medical services are not conveyed by those services. The practice of non-conveyance is a result of the increasing and changing demands on the acute care system. Research focusing on the outcomes of the decision by emergency medical services to not convey patients is needed. AIM: The aim was to describe outcomes (emergency department visits, admission to in-hospital intensive care units and mortality, all within seven days) and their association with the variables (sex, age, day of week, time of day, emergency signs and symptoms codes, triage level colour, and destination) for non-conveyed patients. METHODS: This was a prospective analytical study with consecutive inclusion of all patients not conveyed by emergency medical services. Patients were included between February 2016 and January 2017. The study was conducted in Region Örebro county, Sweden. The region consists of both rural and urban areas and has a population of approximately 295,000. The region had three ambulance departments that received approximately 30,000 assignments per year. RESULTS: The result showed that no patient received intensive care, and 18 (0.7%) patients died within seven days after the non-conveyance decision. Older age was associated with a higher risk of hospitalisation and death within seven days after a non-conveyance decision. CONCLUSIONS: Based on the results of this one-year follow-up study, few patients compared to previous studies were admitted to the hospital, received intensive care or died within seven days. This study contributes insights that can be used to improve non-conveyance guidelines and minimise the risk of patient harm., Funding agency:Research committee of the county council of Örebro OLL-942072 OLL-960656 OLL-840471

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.

Introduction: Over time, ambulance assignments have increased in number both nationally and internationally, and a substantial proportion of patients encountered by emergency medical services are assessed as not being in need of services. Non-conveying patients has become a way for emergency medical services clinicians to meet this increasing workload. It has been shown that ambulances can be made available sooner if patients are non-conveyed, but there is no previous research describing the factors that influence the non-conveyance time. Study objective: To describe ambulance time consumption and the factors that influence time consumption when patients are non-conveyed. Methods: A prospective observational review of 2615 non-conveyed patients' ambulance and hospital medical records was conducted using a consecutive sample. Data were analysed with the Kruskal-Wallis test, Mann-Whitney U test and Spearman's rank correlation (rho) for linear correlations. Results: The mean NC time for all ambulance assignments during the study period was 26 minutes, with a median of 25 minutes. The shortest NC time was 4 minutes, and the longest NC time was 73 minutes. NC times were significantly faster during the day than at night. Conclusions: This study provides new knowledge about time consumption when patients are non-conveyed. Although there are time differences when patients are non-conveyed, the differences observed in this study are small and not of clinical value. Ambulances will most often become available sooner if patients are non-conveyed. Although patients might be eligible for non-conveyance, policy-makers might have to decide when it is appropriate to non-convey patients from time, resource, patient safety and patient-centred care perspectives., Funding agency:Research Committee in the county council of Örebro

Background: Proton beam therapy (PBT) is increasingly administered to patients with primary brain tumors. Benefits of new treatments must be weighed against side effects and possible deterioration in health-related quality of life (HRQoL). The aim of this study was to describe and compare HRQoL, including acute symptom experiences and associated factors, in patients with malignant and benign brain tumors treated with PBT. Materials and Methods: Adult PBT-treated patients with primary brain tumors (n = 266) were studied. HRQoL was assessed with EORTC QLQ-C30, QLQ-BN20, HADS, ISI and MFI before, during and three months after treatment. Associations with demographic and medical factors were explored. Results: Between baseline and three months post-treatment: HRQoL decreased significantly in the global health/QOL domains physical functioning, role functioning and cognitive functioning in the malignant group, global health/QOL and physical functioning decreased significantly in the benign group, more comorbidity was significantly associated with increased motor dysfunction, leg weakness, headache and future uncertainty. Fatigue and depression were the most frequent symptoms in both groups. Independent predictors of risk factor recognition were age, sex, chemotherapy, comorbidity and education level. Discussion: Global health/QOL in patient with brain tumors is very complex and multidimensional. Symptoms are interrelated and related to patient, tumor and treatment factors. It is important to identify aspects of HRQoL that may be affected by treatment. These include both benefits, expected to improve HRQoL, and negative changes such as symptom experience and influencing factors. Evidence-based guidelines are needed for symptom management, and for high quality of care for patients experiencing low PBT-related HRQoL.

Introduction: Over time, ambulance assignments have increased in number both nationally and internationally, and a substantial proportion of patients encountered by emergency medical services are assessed as not being in need of services. Non-conveying patients has become a way for emergency medical services clinicians to meet this increasing workload. It has been shown that ambulances can be made available sooner if patients are non-conveyed, but there is no previous research describing the factors that influence the non-conveyance time. Study objective: To describe ambulance time consumption and the factors that influence time consumption when patients are non-conveyed. Methods: A prospective observational review of 2615 non-conveyed patients' ambulance and hospital medical records was conducted using a consecutive sample. Data were analysed with the Kruskal-Wallis test, Mann-Whitney U test and Spearman's rank correlation (rho) for linear correlations. Results: The mean NC time for all ambulance assignments during the study period was 26 minutes, with a median of 25 minutes. The shortest NC time was 4 minutes, and the longest NC time was 73 minutes. NC times were significantly faster during the day than at night. Conclusions: This study provides new knowledge about time consumption when patients are non-conveyed. Although there are time differences when patients are non-conveyed, the differences observed in this study are small and not of clinical value. Ambulances will most often become available sooner if patients are non-conveyed. Although patients might be eligible for non-conveyance, policy-makers might have to decide when it is appropriate to non-convey patients from time, resource, patient safety and patient-centred care perspectives., Funding agency:Research Committee in the county council of Örebro

Background: Proton beam therapy (PBT) is increasingly administered to patients with primary brain tumors. Benefits of new treatments must be weighed against side effects and possible deterioration in health-related quality of life (HRQoL). The aim of this study was to describe and compare HRQoL, including acute symptom experiences and associated factors, in patients with malignant and benign brain tumors treated with PBT. Materials and Methods: Adult PBT-treated patients with primary brain tumors (n = 266) were studied. HRQoL was assessed with EORTC QLQ-C30, QLQ-BN20, HADS, ISI and MFI before, during and three months after treatment. Associations with demographic and medical factors were explored. Results: Between baseline and three months post-treatment: HRQoL decreased significantly in the global health/QOL domains physical functioning, role functioning and cognitive functioning in the malignant group, global health/QOL and physical functioning decreased significantly in the benign group, more comorbidity was significantly associated with increased motor dysfunction, leg weakness, headache and future uncertainty. Fatigue and depression were the most frequent symptoms in both groups. Independent predictors of risk factor recognition were age, sex, chemotherapy, comorbidity and education level. Discussion: Global health/QOL in patient with brain tumors is very complex and multidimensional. Symptoms are interrelated and related to patient, tumor and treatment factors. It is important to identify aspects of HRQoL that may be affected by treatment. These include both benefits, expected to improve HRQoL, and negative changes such as symptom experience and influencing factors. Evidence-based guidelines are needed for symptom management, and for high quality of care for patients experiencing low PBT-related HRQoL.

BACKGROUND: This study aims to evaluate data quality, scaling properties, and reliability of the Swedish RAND-36 in a general population sample and to present reference data for the Swedish population. METHODS: Testing of data quality, scaling assumptions and reliability followed methods recommended for the International Quality of Life Assessment Project, previously used for psychometric testing of SF-36 and RAND-36. Data were collected via regular mail for a random stratified sample of the general population in a Swedish county. Weighted means for RAND-36 scores were used and differences by sex, age, education, and occupational groups were tested. RESULTS: The response rate was 42%, and the sample comprised 3432 persons (45% men, 55% women) with a median age of 56.9 years. The internal consistency reliability was satisfactory, with Cronbach's alphas > 0.80 for all eight scales. The percentage of missing items was low, ranging between 1.3% and 3.2%. No floor effects (≥15%) were noted, while ceiling effects were observed for physical functioning, role-functioning/physical, pain, role-functioning/emotional, and social functioning. Item-scale correlations were satisfactory (r ≥ 0.40). Correlations among the physical health scales were strong (range 0.58-0.68) as were the correlations among the mental health scales (range 0.58-0.73). Men reported significantly better health-related quality of life (HRQoL) on all scales, although the gender differences were small. Comparisons among age groups showed approximately equal scores among those 20-29, 30-39, and 40-49 years, while significant decreases in physical health were observed in the older age groups. Substantially worse physical health scores were observed in the oldest age group (80+). Significant differences among age groups were noted also for the mental health scales; however, better energy/fatigue and emotional well-being scores were seen in the older age groups, except for the oldest (80+). Those with univers, Funding agency:Research Committee of Örebro County Council OLL-506801

Background: Currently, no available tool easily and effectively measures both the frequency, intensity and distress of symptoms among patients receiving radiotherapy. A core symptom set (fatigue, insomnia, pain, appetite loss, cognitive problems, anxiety, nausea, depression, constipation, diarrhoea and skin reaction) has been identified and assessed across oncology research to better understand the pattern of symptoms and treatment side effects. Aim: The aim was to develop a tool measuring the multiple-symptom experience in patients undergoing radiotherapy and evaluate its psychometric properties (validity, reliability and responsiveness). Design: This study has a prospective, longitudinal and quantitative design. Methods: We developed a patient-reported outcome questionnaire, the Radiotherapy-Related Symptoms Assessment Scale to assess the frequency, intensity and distress associated with symptoms. Patients (n = 175) with brain tumours undergoing proton beam therapy completed the Radiotherapy-Related Symptoms Assessment Scale and the health-related quality of life questionnaire (EORTC QLQ-C30) during treatment. We assessed the validity, reliability and responsiveness of the Radiotherapy-Related Symptoms Assessment Scale and evaluated the validity against QLQ-C30. Results: There were significant questionnaire-questionnaire correlations regarding selected items, primarily fatigue, insomnia and pain, indicating satisfactory criterion-related validity. The Radiotherapy-Related Symptoms Assessment Scale had fair to good retest reliability. Conclusion: The Radiotherapy-Related Symptoms Assessment Scale is a valid instrument for assessing symptom intensity and distress in patients with brain tumour undergoing PBT, with psychometric properties within the expected range. The Radiotherapy-Related Symptoms Assessment Scale provides nurses with substantial information on symptom experience but requires little effort from the patient. Additional studies are required to further

Introduction: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics. Material and Methods: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic. Results: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed. Conclusion: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.

Introduction: On 15-16 November 2019, the Skandion Clinic in Sweden hosted the first Nordic workshop on 'Patients' perspective in proton beam therapy'. The workshop was conducted to describe and compare the patient care in PBT clinics in the Nordic countries and to initiate a collaboration, with the target to ensure patient participation and reduce the risk of inequity of access by lowering the barriers for accepting PBT in a distant clinic. The overarching aim of this workshop was to describe and compare the use of patients' perspectives in the Nordic PBT clinics. Material and Methods: Twelve participants attended the workshop, representing Denmark, Norway and Sweden. The participants were registered nurses working in patient care, researchers, physicist and leaders of the Skandion Clinic. Results: The consensus of the workshop was that systematic use of patient experiences on individual and group level is essential for developing clinical practice and understanding the overall effects of PBT. A difference in how the Nordic countries use patient experiences in clinical practise was found. The importance of lowering the barriers for participation in national proton trials and proton treatment were emphasized, however, there is a lack of knowledge about individual and organizational barriers to accepting PBT, and further research is therefore needed. Conclusion: Collaboration between the Nordic countries regarding patients' perspectives in the context of PBT is of importance to compare national differences as well as to find similarities, but most importantly to learn from each other and to improve patient care. Nordic collaboration with focus on systematic collection of patient-reported outcomes in the context of PBT is unique. Collaboration in research offers the possibility to increase the inclusion of patients' perspectives in study protocols.

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.

OBJECTIVE: The aim of this study was to evaluate the validity of Stigma-related Social Problems scale (SSP) in a cancer population. MATERIALS AND METHODS: The SSP was sent to 1,179 cancer patients. Mean age was 67.9 year and 43% were women. Tests of internal consistency reliability, construct validity, item-scale convergent validity, ceiling and floor effects and known-group validity were conducted. RESULTS: The response rate was 62%, and the final sample comprised 728 patients. Reliability coefficients were high for both subscales (Cronbach's alpha = 0.94). Exploratory factor analyses confirmed the unidimensionality and homogeneity of the scales. Item-scale correlations for both scales indicated satisfactory item-scale convergent validity. The proportion of subjects scoring at the lowest possible score level was 26% for the Distress scale and 28% for the Avoidance scale, while ceiling effects were marginal (<1%). The proportion of missing items was low, ranging from 1.4% to 1.5%. Known-group validity tests confirmed that the scales could capture expected differences between subgroups. CONCLUSIONS: The SSP scale is a feasible instrument with sound psychometric properties that is validated in a study on 728 cancer patients. The instrument can be used to identify cancer patients at risk for psychosocial disturbances and thus in need of support., Funding Agency:Research Committee of Orebro County Council OLL2016/287

Aims: To describe how nurses perceive and promote inpatients' needs for physical activity during their stay at the ward. Design: A qualitative descriptive design was employed providing an exploration of how nurses perceive and promote inpatients' need for physical activity. Methods: Seven semi-structured focus group discussions were held between November 2016 and February 2017 with 29 nurses in three hospitals in Sweden. Both interaction analysis and content analysis of the data were conducted. Results: Patients are dependent on nurses' prioritizations and promotions to be sufficiently physically active during their stay at the ward. The external environment and the integration of physical activity affected the promotion of physical activity. The nurses perceived that understanding the patient's expectations was important and that promotion of physical activity was a joint responsibility of patient, relatives and healthcare professionals. The interaction analysis revealed no clear hierarchical pattern as all members in each focus group took initiative to open the discussions. The Registered Nurses contributed with more new ideas.

Background: There has been an increasing demand for emergency medical services (EMS), and a growing number of patients are not conveyed; i.e., they are referred to levels of care other than ambulance conveyance to the emergency department. Patient safety issues have been raised regarding the ability of EMS to decide not to convey patients. To improve non-conveyance guidelines, information is needed about patients who are not conveyed by EMS. Therefore, the purpose of this study was to describe and compare the proportion and characteristics of non-conveyed EMS patients, together with assignment data. Methods: A descriptive and comparative consecutive cohort design was undertaken. The decision of whether to convey patients was made by EMS according to a region-specific non-conveyance guideline. Non-conveyed patients' medical record data were prospectively gathered from February 2016 to January 2017. Analyses was conducted using the chi-squared test, two-sample t test, proportion test and Mann-Whitneys U-test. Results: Out of the 23,250 patients served during the study period, 2691 (12%) were not conveyed. For non-conveyed adults, the most commonly used Emergency Signs and Symptoms (ESS) codes were unspecific symptoms/malaise, abdomen/flank/groin pain, and breathing difficulties. For non-conveyed children, the most common ESS codes were breathing difficulties and fever of unclear origin. Most of the non-conveyed patients had normal vital signs. Half of all patients with a designated non-conveyance level of care were referred to self-care. There were statistically significant differences between men and women. Conclusions: Fewer patients were non-conveyed in the studied region compared to national and international non-conveyance rates. The differences seen between men and women were not of clinical significance. Follow-up studies are needed to understand what effect patient outcome so that guidelines might improve., Funding Agency:Research Committee in the county council of Örebro OLL-674451 OLL-767301 OLL-811401 OLL-840471

BACKGROUND: Symptom management in conjunction with proton beam therapy (PBT) from patient's perspective has not been explored. Such knowledge is essential to optimize the care in this relatively new treatment modality. OBJECTIVE: The aim of this study was to explore the process of symptom management in patients with brain tumor receiving PBT. METHODS: Participants were 22 patients with primary brain tumor who received PBT, recruited in collaboration with a national center for proton therapy and 2 oncology clinics at 2 university hospitals in Sweden. Interviews using open-ended questions were conducted before, during, and/or after treatment. Verbatim interview transcripts were analyzed using classic Grounded Theory. RESULTS: "The art of living with symptoms" emerged as the core concept. This encompassed 3 interconnected symptom management concepts: "Adapting to limited ability," "Learning about oneself," and "Creating new routines." These concepts were summarized in a substantive theoretical model of symptom management. Despite the struggle to manage symptoms, participants lived a satisfactory life. CONCLUSIONS: Symptom management in conjunction with PBT comprises a process of action, thoughts, and emotions. The concepts that emerged indicated patients' symptom management strategies were based on their own resources. IMPLICATIONS FOR PRACTICE: It is important that PBT facilities develop an approach that facilitates the symptom management process based on patients' experiences of symptoms, as well as their actions and available resources.

Introduction: Rehabilitation for cancer patients aims at preventing and reducing the physical, mental, social and existential consequences of a cancer disease and its treatment. The aim of this study is to describe the patients' self-perceived interest in participating in cancer rehabilitation (CR). Material and methods: A total of 1179 cancer patients, diagnosed with 28 different cancer diagnoses, from November 2015 to October 2016, were identified via the national cancer quality registers. A questionnaire was developed for the purpose of this study, the Cancer Rehabilitation Interest. The questionnaire comprises 16 different rehabilitation activities. This study describes what activities the patients are interested to participate in. Results: The response rate was 62% and the final sample comprised 728 patients. The rehabilitation activities wanted by the cancer patients were Psychoeducational support group together with others with the same cancer diagnosis, Open lectures on cancer, Individual weight training with a physiotherapist and Personal support from a social worker. Most interested in cancer rehabilitation were women, younger patients, university educated patients and those who had received their diagnosis >= 12 months prior. Patients with a mandatory educational level had the lowest interest in all suggested activities compared with those having medium or high education. Conclusions: The interest of cancer rehabilitation of all approached patients in this study were 21%. Most interested were women, young patients, university educated and those who received their diagnosis >= 12 months earlier. About 30% of the participating cancer patients reported an interest of information and supportive groups, physical training and support from a hospital social worker. Patients with low level of education reported a low interest in CR. There are limitations in rehabilitation accessibility and that might affect a person's motivation to participate in this study, Funding Agency:Research Committee of Orebro County Council OLL-506801

OBJECTIVES: To explore symptom clusters during proton beam therapy in patients with primary brain tumors and investigate associations among symptom clusters, demographic variables, and comorbidity in this patient population. SAMPLE & SETTING: Data were collected from 187 adult patients with primary brain tumors during their treatment periods in the Skandion Clinic in Uppsala, Sweden. Symptoms were assessed with the Radiotherapy-Related Symptoms Assessment Scale, and comorbidity was evaluated with the Self-Administered Comorbidity Questionnaire. METHODS & VARIABLES: The study used a quantitative and longitudinal design. Exploratory factor analysis was used to determine the underlying structure of symptom clusters. RESULTS: Three clusters were identified: mood, reduced appetite, and reduced energy. The mood cluster had the highest factor loadings (0.71-0.86). In addition, demographic and comorbidity characteristics were associated with symptom clusters in this group of patients. IMPLICATIONS FOR NURSING: Building knowledge about how these symptoms interact and are clustered will support healthcare professionals to more efficiently relieve symptom clusters during proton beam therapy.

Felt stigma is an internalized sense of shame about having an unwanted condition, along with fear of discrimination. The Stigma-related Social Problems (SSP) scale was constructed to measure the impact of health-related stigma on psychosocial functioning in people with different diseases and disorders. The performance of the SSP scale was tested in 3,422 subjects from the general population (Mid-Swed Health Survey) and in subgroups according to gender, age, occupation, and education. The homogeneity and construct validity of the Distress and Avoidance scales were confirmed by exploratory factor analysis and the two factors were accurately reproduced across gender and age subgroups. The internal consistency reliability was high for both the Distress and Avoidance scales. Reliability coefficients were above the 0.90 standard for the Distress scale in all subgroups and for the Avoidance scale in most subgroups. The SSP scale is an instrument with sound psychometric properties that can be used to identify psychosocial disturbances., Funding Agency:Research Committee of Orebro County Council OLL-506801

Purpose: Patients with brain tumors constitute a vulnerable group, and it is important that they receive the highest quality of care (QoC). The study aim was to describe the perceptions of QoC and its association with health-related quality of life in brain tumor patients undergoing proton beam therapy in a newly established clinic. Method: Data were collected at the start of treatment and after 3 and 6weeks. Adult patients (18years old) with brain tumors (n=186) completed two self-administered questionnaires: a modified Quality from the Patients' Perspective, which measures perceived reality and subjective importance of care, and the EORTC QLQ-C30. Data were analyzed using parametric and non-parametric statistical tests. Results: The perceived QoC was highest for treatment information and lowest for dietician and smoking information, whereas interaction with doctors and nurses was rated as the most important aspect of quality of care. Subjective importance ratings were significantly higher than perceived reality ratings for 60% of items. A better global health was moderately correlated with a higher perceived support for fatigue. Conclusions: A need for quality improvement was identified for several aspects of patient care. Greater symptom distress during the treatment period led to greater perceived importance of symptom support. Ensuring QoC is complex and collaboration with other health care professionals is essential. Relevance to clinical practice: The clinic could improve QoC regarding information about possible symptoms, adjust care according to patient perceptions of importance, and involve patients in care decisions., Funding Agency:Cancer Research Foundation in Northern Sweden CAN 2016/809 CAN2015/428

Background: Patients enrolled in wards at hospitals spend time in bed even if rest is not medically indicated. The inactivity in the hospital reduces muscle strength and can create a need for assistants that did not exist before or justified by the treated condition. Early and progressive mobilization is a key factor to maintain physical functioning during the care period in hospital. Despite the knowledge of the importance of physical activity, patients are not sufficiently mobilized. Reasons why patients are not mobilized are related to organizational factors as well as patient and nurse personal characteristics. With an understanding of nurses’ experiences, interventions to enhance patients’ physical activity can be develop aiming at reducing the risk of physical deterioration due to inactivity. Objective: The aim of the study was to describe how nurses perceive hospitalized patients’ needs for progressed physical activity during their stay at the wards. Method: A total of seven focus group discussions were conducted in seven wards at three different hospitals in Sweden. A total of 16 nurses and 14 nurse assistants participated. The analysis was conducted in two steps; First an interaction analysis of the communication and respond pattern in the focus groups and thereafter a content analysis of the transcribed text. Results: The analysis is in progress and the results will be presented at the conference.

Background: Felt stigma is an internalized sense of shame about having an unwanted condition along with fear of discrimination due to imputed inferiority or unacceptability. Various illnesses and symptoms of disease are associated with health-related stigma and individuals may experience stigma that strongly affects their quality of life. The Stigmarelated Social Problems scale (SSP) was developed for measuring the impact of health-related stigma on social functioning in people with different diseases and disorders. Objective: The aim of the study was to evaluate the validity of SSP in the general Swedish population. Method: In 2015, SSP was sent to a random population sample (n=8140). Tests of the internal consistency reliability of scale scores (Cronbach’s alpha), the unidimensionality and homogeneity of scales (factor analysis), item-scale convergent validity, ceiling and floor effects, and known group analysis were conducted. Results: The response rate was 42%. Reliability coefficients were high (< 0.93) for both scales. Factor analyses confirmed the unidimensionality. Item-scale correlations for both scales indicated satisfactory item-scale convergent validity (r ≥ 0.40). The proportion of subjects scoring at the lowest possible score level (floor effect) was 25% for the Distress scale and 28% for the Avoidance scale, while ceiling effects were marginal (<1%). The proportion of missing items was generally low, ranging from 0.8-1.5%.

Aim The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kin's life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP. Methods The study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis. Results Based on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care. Conclusion The findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kin's situation and experience from participating in a PEP.

Aim: To describe the experience of life the first year after surgery from the perspective of persons treated for colorectal cancer and their partners. Background: Colorectal cancer is a common cancer form, and treatment can cause unpleasant side effects such as sexual dysfunction and bowel problems. Partners struggle to keep family life normal and provide support. Little is known about couples' experiences a year after treatment for colorectal cancer. Design: Qualitative descriptive. Methods. Individual semi-structured interviews with 13 persons treated for colorectal cancer and their partners, a total of 26 participants. Results: One theme was identified in the study; ` Life is back to normal and yet not': participants described living a normal but different life than before. Three subthemes were identified; ` Life has a shadow of death', ` The treated body sets the rules' and ` To share or not share the illness'. Conclusions: Findings showed that both the patients' and their partners' lives were influenced by uncertainty and the condition of the patient. Attitudes varied towards sharing the illness. It was found that information needs varied both within and between couples. A future challenge to healthcare personnel is the obligation to meet the needs of both patients and their partners on the illness trajectory and recovery after treatment for colorectal cancer. Relevance to clinical practice: Findings enhance the understanding of the impact of colorectal cancer on both patients and partners. Healthcare personnel need to assess both the patient's and partner's need for information, support and assistance. Support groups could be an effective tool for providing information, communication and support. Future studies are needed to evaluate such groups.