BackgroundPersons 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.PurposeThe aim of this review was to identify the use, challenges, and potential of PRO measures in survivors of high-grade glioma.MethodsA 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.ResultsThere 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.ConclusionFor 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.

BACKGROUND:The Swedish national quality registry for brain tumors is a population-based register established 1999. The register covers clinical variables, time to surgery and treatment, type of treatment and WHO performance status on all brain tumor patients in Sweden. However, there are no Patient Reported Outcomes (PRO) or Patient Reported Experience (PRE) measures in the registry. PRO measures include symptoms of the disease, performance status and health-related quality of life. PRE measure include patients perception of and satisfaction with care, this may include treatment, participation, information, confidence in the caregiver and availability. The aim was to develop and implement PRO and PRE measures for brain tumor patients at different stages in the disease for use in the Swedish national quality register for brain tumors. METHODS AND MATERIALS: A project group with physicians, nurses, and patients was formed. A literature review of valid instruments was done. Focus group discussions were conducted with patients invited by the Swedish brain tumor association. The results that emerge from the discussions with patients and the project group formed the basis for the development of a web based questionnaire of PRO measures. In the first place already validated instrument found in the literature review was used. PRE measures for this group of patients will be selected from a national questionnaire of cancer patients. The patients who participated in the group discussions were invited to respond to the pilot version of the web based questionnaire. RESULTS AND CONCLUSION: The results were used to form the first draft of a web based questionnaire. Besides symptoms and quality of life the patients found the registry important for evaluate equitable care like asses to care and rehabilitation. It is also important to find an optimal time point for measuring PRO/PRE in relation to other evaluated parameters in the disease process. In the development of PRO and PRE measures it is a great value to include patient's experiences in order to develop relevant outcome measures to influence the quality of the health care delivery.Neuro-Oncology 16:ii1 -ii112, 2014.

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Background: 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. Aim: The aim was to translate, culturally adapt and evaluate candidate items to measure person-centred care from the patient's perspective. Methods: 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. Results: 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 cocreated. 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). Conclusion: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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