| 1. |
- Anandavadivelan, Poorna, et al.
(författare)
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Prevalence and intensity of dumping symptoms and their association with health-related quality of life following surgery for oesophageal cancer
- 2021
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Ingår i: Clinical Nutrition. - : Elsevier. - 0261-5614 .- 1532-1983. ; 40:3, s. 1233-1240
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND & AIMS: This study aimed to investigate the prevalence and intensity of symptoms of dumping syndrome (early and late) experienced by oesophageal cancer survivors one year after surgery and their association with health related quality of life (HRQL).METHODS: A prospective cohort study of patients who underwent surgery for oesophageal cancer in Sweden from January 2013 to April 2018, included at one year after surgery with follow-up at 1.5 years. Common symptoms of dumping syndrome were the exposure, classified as early and late onset, further divided into 'moderate' or 'severe' based on symptom intensity, and no dumping symptoms (reference group). The primary outcome was mean summary score of HRQL, and secondary outcomes were global quality of life, physical, role, emotional, cognitive and social function measured using the EORTC QLQ-C30 1.5 years after surgery. An ANCOVA model, adjusted for potential confounders was used to study the association between dumping symptoms and HRQL, presented as mean score differences (MD) with 95% confidence intervals (CI).RESULTS: Among 188 patients, moderate early dumping symptoms was experienced by 45% and severe early dumping by 9%. Moderate late dumping symptoms was reported by 13%, whereas 5% reported severe late dumping symptoms. Severe early dumping symptoms was associated with worse HRQL in 4 out of 7 aspects with worse global quality of life (MD -16, 95% CI: -27 to -4) and social function (MD -17, 95% CI: -32 to -3), which showed clinically large differences compared to having no such symptoms. Patients with moderate late dumping symptoms reported poorer HRQL in 6 out of 7 aspects compared to those with no dumping symptoms. Cognitive function (MD -27, 95% CI: -47 to -7) and emotional function (MD -24, 95% CI: -47 to -2) were significantly declined (clinically large relevance) in those with severe late dumping symptoms.CONCLUSIONS: Patients who have undergone curative treatment for oesophageal cancer experience reduced HRQL from early and late dumping symptoms at one year after surgery that indicate clear implications for clinical routine. Medical support and additional dietary counselling are required as potential ways to alleviate dumping symptoms on clinical repercussions.
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| 2. |
- Boele, Florien, et al.
(författare)
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Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives
- 2024
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Ingår i: NEURO-ONCOLOGY PRACTICE. - 2054-2577 .- 2054-2585.
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Tidskriftsartikel (refereegranskat)abstract
- Background Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients' needs and referral to services.Methods Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored.Results In total, 103 participants completed the survey (67% women and 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive-, and palliative care services were available yet rated "inadequate" by 21-37% of participants. Most respondents with a clinical role (n = 94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (n = 103) indicated the main reasons for not screening/referring were (1) lack of suitable referral options (50%); (2) shortage of healthcare professionals (48%); and (3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology-specific issues (75%), improving the availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%).Conclusions Detecting and managing neuro-oncology patients' and caregivers' rehabilitation, supportive,- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities.
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| 3. |
- Bruhn, Helena, et al.
(författare)
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Do presenting symptoms predict treatment decisions and survival in glioblastoma? Real-world data from 1458 patients in the Swedish brain tumor registry
- 2024
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Ingår i: Neuro-Oncology Practice. - : OXFORD UNIV PRESS. - 2054-2577 .- 2054-2585.
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Tidskriftsartikel (refereegranskat)abstract
- Background Glioblastoma is the most common malignant brain tumor in adults. Non-invasive clinical parameters could play a crucial role in treatment planning and serve as predictors of patient survival. Our register-based real-life study aimed to investigate the prognostic value of presenting symptoms. Methods Data on presenting symptoms and survival, as well as known prognostic factors, were retrieved for all glioblastoma patients in Sweden registered in the Swedish Brain Tumor Registry between 2018 and 2021. The prognostic impact of different presenting symptoms was calculated using the Cox proportional hazard model. Results Data from 1458 adults with pathologically verified IDH wild-type glioblastoma were analyzed. Median survival time was 345 days. The 2-year survival rate was 21.5%. Registered presenting symptoms were focal neurological deficits, cognitive dysfunction, headache, epilepsy, signs of raised intracranial pressure, and cranial nerve symptoms, with some patients having multiple symptoms. Patients with initial cognitive dysfunction had significantly shorter survival than patients without; 265 days (245-285) vs. 409 days (365-453; P < .001). The reduced survival remained after Cox regression adjusting for known prognostic factors. Patients presenting with seizures and patients with headaches had significantly longer overall survival compared to patients without these symptoms, but the difference was not retained in multivariate analysis. Patients with cognitive deficits were less likely to have radical surgery and to receive extensive anti-neoplastic nonsurgical treatment. Conclusions This extensive real-life study reveals that initial cognitive impairment acts as an independent negative predictive factor for treatment decisions and adversely affects survival outcomes in glioblastoma patients.
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| 4. |
- Kinhult, Sara, et al.
(författare)
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Regional variation i användningen av TTF vid glioblastombehandling : [Regional variation in usage of TTF (Optune)]
- 2023
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Ingår i: Läkartidningen. - : Läkartidningen Förlag AB. - 0023-7205 .- 1652-7518. ; 120:120
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Tidskriftsartikel (refereegranskat)abstract
- The standard treatment of glioblastoma, an aggressive brain tumour, includes radiotherapy combined with temozolomide. Based on a randomised trial, showing five months increased survival, TTF has been introduced in the management of patients with good performance status. Data from the Swedish national quality registry for CNS tumours have been analysed for TTF usage. The results demonstrate that 65 percent of the patients accepted treatment with TTF. More than half of the treated patients interrupted treatment due to low compliance or their own wish. Median treatment time was 164 days, with a range from 0 to 774 days. There was a large variation between different regions in how many patients were offered TTF treatment. A non-significant trend to better survival was seen for the group of TTF-treated patients compared to individually matched controls. In summary, TTF is a new treatment for glioblastoma, with potential to prolong survival also in real world patients. Today, the treatment is not offered equally to all patients, despite national guidelines.
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| 5. |
- Kinhult, Sara, et al.
(författare)
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Regional variation i användningen av TTF vid glioblastombehandling
- 2023
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Ingår i: Lakartidningen. - 0023-7205. ; 120
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Tidskriftsartikel (refereegranskat)abstract
- The standard treatment of glioblastoma, an aggressive brain tumour, includes radiotherapy combined with temozolomide. Based on a randomised trial, showing five months increased survival, TTF has been introduced in the management of patients with good performance status. Data from the Swedish national quality registry for CNS tumours have been analysed for TTF usage. The results demonstrate that 65 percent of the patients accepted treatment with TTF. More than half of the treated patients interrupted treatment due to low compliance or their own wish. Median treatment time was 164 days, with a range from 0 to 774 days. There was a large variation between different regions in how many patients were offered TTF treatment. A non-significant trend to better survival was seen for the group of TTF-treated patients compared to individually matched controls. In summary, TTF is a new treatment for glioblastoma, with potential to prolong survival also in real world patients. Today, the treatment is not offered equally to all patients, despite national guidelines.
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| 6. |
- Kinhult, Sara, et al.
(författare)
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Regional variation in usage of TTF (Optune) Regional variation i användningen av TTF vid glioblastombehandling : [Regional variation in usage of TTF (Optune)]
- 2023
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Ingår i: Läkartidningen. - : Sveriges läkarförbund. - 0023-7205 .- 1652-7518. ; 120
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Tidskriftsartikel (refereegranskat)abstract
- The standard treatment of glioblastoma, an aggressive brain tumour, includes radiotherapy combined with temozolomide. Based on a randomised trial, showing five months increased survival, TTF has been introduced in the management of patients with good performance status. Data from the Swedish national quality registry for CNS tumours have been analysed for TTF usage. The results demonstrate that 65 percent of the patients accepted treatment with TTF. More than half of the treated patients interrupted treatment due to low compliance or their own wish. Median treatment time was 164 days, with a range from 0 to 774 days. There was a large variation between different regions in how many patients were offered TTF treatment. A non-significant trend to better survival was seen for the group of TTF-treated patients compared to individually matched controls. In summary, TTF is a new treatment for glioblastoma, with potential to prolong survival also in real world patients. Today, the treatment is not offered equally to all patients, despite national guidelines.
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| 7. |
- Rosenlund, Lena, et al.
(författare)
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Measuring patient experiences of person-centred care: Translation, cultural adaption and qualitative evaluation of item candidates for use in England and Sweden.
- 2022
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Ingår i: Scandinavian journal of caring sciences. - : Wiley. - 1471-6712 .- 0283-9318. ; 36:1, s. 235-244
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Tidskriftsartikel (refereegranskat)abstract
- To facilitate change for person-centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person-centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person-centred care.The aim was to translate, culturally adapt and evaluate candidate items to measure person-centred care from the patient's perspective.The Centre for person-centred care at Gothenburg university and the UK Person-centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person-centred care or questionnaire design (n=84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews.From the initial pool, 155 items covering core domains and subdomains of person-centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person-centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two-ways and care is co-created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well-being and identifying goals).We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person-centred care.
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| 8. |
- Rosenlund, Lena, et al.
(författare)
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Moving from clinician-defined to patient-reported outcome measures for survivors of high-grade glioma
- 2019
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Ingår i: Patient-Related Outcome Measures. - 1179-271X. ; 10, s. 267-276
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Tidskriftsartikel (refereegranskat)abstract
- Background: Persons with high-grade glioma face both neurological and cancer-related symptoms from the tumor itself and its treatment affecting their daily lives. Survival alone is not an adequate outcome, the quality of the survivorship experience needs to be regarded with equal importance. Patient-reported outcome (PRO) measures can be used to evaluate treatment effects and symptom management interventions. Purpose: The aim of this review was to identify the use, challenges, and potential of PRO measures in survivors of high-grade glioma. Methods: A narrative expert opinion review was performed on the subject. In addition to our own experiences we searched PubMed, Cumulative Index to Nursing and Allied Health Literature, the Cochrane Library, and PsycINFO for brain tumor-specific PRO measures used in the population of adult patients with high-grade glioma, both original articles and reviews were included. Results: There are several PRO measures that have been validated for patients with primary brain tumors including high-grade glioma. PRO measures are used both in clinical trials to evaluate the effect of treatment on health-related quality of life, and in daily clinical practice for holistic needs assessment and symptom management. Common PRO measures used for patients with high-grade glioma are European Organization for Research and Treatment of Cancer general instrument for patients with cancer together with brain tumor module, Functional Assessment of Cancer Therapy-Brain, and MD Anderson Symptom Inventory for Brain Tumor. Neurologic and cognitive disorders often occur in patients with high-grade glioma, which affects patients' ability to self-report over time, making it more challenging in this population. PRO as a primary outcome seems underutilized. Conclusion: For clinical research, PRO measures need to be used together with other clinical outcome measures rather than replacing traditional outcome measures. Moving to more use of PRO measures in survivorship care has potential to improve patient-caregiver-healthcare team communication, symptom management, and quality of care. Implementing PROs in survivorship care should also involve caregivers and a response based on the results.
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| 9. |
- Rosenlund, Lena
(författare)
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Towards an item bank to measure patient-reported experience of person-centred care
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The reorienting of healthcare towards a more person-centred approach requires new approaches to evaluate care from the patient perspective. The overall aim of this thesis was to explore care from the perspective of people living with long-term conditions, and to develop and psychometrically test Swedish and English items to measure patient experience of PCC. In Study I, items (n = 155) probing patient experiences of PCC was translated, and a mixed-methods design was used for a qualitative item review involving different stakeholders (n = 84). The content, relevance, and acceptability of the items were evaluated in two validation rounds using questionnaires, a focus group discussion, and cognitive interviews. The item review resulted in 57 Swedish and English candidate items probing person-centred care from the patient perspective. Study II employed individual semi-structured interviews to explore communication and collaboration within a patient-professional partnership from the experiences of persons living with long-term conditions (n = 15). Through an inductive thematic analysis, five themes were identified: Adapting and self-managing in daily life, Handling and carrying information, Building trust and continuity, Acting in a flexible and transparent dialogue, and Sharing the way forward. Study III and Study IV were quantitative and used a cross-sectional design. The candidate items retrieved from Study I, were psychometrically tested against the Rasch measurement model in Study III with data gathered from a hospital in Sweden (n = 140). Data for Study IV was collected via a web panel in the UK (n = 501). Initial analyses revealed poor fit with local dependency and multidimensionality. After the removal of poorly fitting items, a testlet solution with clustered items grouped into dimensions of the conceptual model of person-centred care showed fit to the Rasch measurement model. The findings presented in this thesis contribute to a better understanding how care is perceived as person-centred from the perspective of people living with long-term conditions and provides a solution and a set of items for a future item bank measuring patient experience of person-centred care for use in Sweden and the UK.
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