Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective

References

• HeimansJJTaphoornMJImpact of brain tumour treatment on quality of lifeJ Neurol2002249895596012195437
   PubMed Web of Science ®Google Scholar
• TaphoornMJSizooEMBottomleyAReview on quality of life issues in patients with primary brain tumorsOncologist201015661862620507891
   PubMed Web of Science ®Google Scholar
• StuppRHegiMEvan den BentMJChanging paradigms – an update on the multidisciplinary management of malignant gliomaOncologist200611216518016476837
   PubMed Web of Science ®Google Scholar
• TsianakasVRobertGMabenJImplementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer servicesSupport Care Cancer201220112639264722544223
   PubMed Web of Science ®Google Scholar
• WhitehouseMCalmanKA policy framework for commissioning cancer servicesBMJ19953106992142514267613269
   PubMedGoogle Scholar
• National Institute for Health and Clinical ExcellenceImproving Outcomes for People with Brain and Other CNS Tumours2006Cancer service guideline [CSG10] Available from: https://www.nice.org.uk/guidance/csg10/resources/improving-outcomes-for-people-with-brain-and-other-central-nervous-system-tumours-update-27841361437Accessed January 11, 2019
   Google Scholar
• GuilfoyleMRWeerakkodyRAOswalAImplementation of neuro-oncology service reconfiguration in accordance with NICE guidance provides enhanced clinical care for patients with glioblastoma multiformeBr J Cancer2011104121810181521610702
   PubMed Web of Science ®Google Scholar
• EnglandNHSDepartment of Health. Cancer patient experience survey 2015 - National Report2015 Available from: http://www.ncpes.co.uk/reports/2015-reports/national-reports/2489-cpes-2015-national-report-pdf/fileAccessed January 11, 2019
   Google Scholar
• The Brain Tumour CharityFinding a better way? Improving the quality of life for people affected by brain tumours2013
   Google Scholar
• Brainstrust - what the brain cancer community needs2015 Available from: http://brainstrust.org.uk/wp-content/uploads/2017/09/what-the-brain-cancer-community-needs.pdfAccessed January 11, 2019
   Google Scholar
• Anglia Cancer NetworkBrain/CNS Patient Experience Survey report2013 Aud93/2103 v1.0 Available from: https://www.canceralliance.co.uk/download/0325534e-4a49-4029-94cd-d0e8191582f7Accessed January 11, 2019
   Google Scholar
• EdiebahDEReijneveldJCTaphoornMJImpact of neurocognitive deficits on patient-proxy agreement regarding health-related quality of life in low-grade glioma patientsQual Life Res201726486988027744512
   PubMed Web of Science ®Google Scholar
• EloSKyngäsHThe qualitative content analysis processJ Adv Nurs200862110711518352969
   PubMed Web of Science ®Google Scholar
• DanforthRMPittHAFlanaganMEBrewsterBDBrandEWFrankelRMSurgical inpatient satisfaction: what are the real drivers?Surgery2014156232833524953272
   PubMed Web of Science ®Google Scholar
• The Health FoundationEvidence scan: Measuring patient experience2013 Available from: https://www.health.org.uk/publications/measuring-patient-experienceAccessed January 11, 2019
   Google Scholar
• DavidsonRMillsMECancer patients’ satisfaction with communication, information and quality of care in a UK regionEur J Cancer Care20051418390
   PubMed Web of Science ®Google Scholar
• LyratzopoulosGNealRDBarbiereJMRubinGPAbelGAVariation in number of general practitioner consultations before hospital referral for cancer: findings from the 2010 National Cancer Patient Experience Survey in EnglandLancet Oncol201213435336522365494
   PubMed Web of Science ®Google Scholar
• LyratzopoulosGAbelGAMcphailSNealRDRubinGPMeasures of promptness of cancer diagnosis in primary care: secondary analysis of national audit data on patients with 18 common and rarer cancersBr J Cancer2013108368669023392082
   PubMed Web of Science ®Google Scholar
• PenfoldCJoannidesAJBellJWalterFMDiagnosing adult primary brain tumours: can we do better?Br J Gen Pract20176765927827928546414
   PubMed Web of Science ®Google Scholar
• FordECattSChalmersAFallowfieldLSystematic review of supportive care needs in patients with primary malignant brain tumorsNeuro Oncol201214439240422307475
   PubMed Web of Science ®Google Scholar
• WagnerEHAiello BowlesEJGreeneSMThe quality of cancer patient experience: perspectives of patients, family members, providers and expertsQual Saf Health Care201019648448921127109
   PubMedGoogle Scholar
• JandaMStegingaSDunnJLangbeckerDWalkerDEakinEUnmet supportive care needs and interest in services among patients with a brain tumour and their carersPatient Educ Couns200871225125818329220
   PubMed Web of Science ®Google Scholar
• SchubartJRKinzieMBFaraceECaring for the brain tumor patient: family caregiver burden and unmet needsNeuro Oncol2008101617217993635
   PubMed Web of Science ®Google Scholar
• SnyderCFGarrett-MayerEBlackfordALConcordance of cancer patients’ function, symptoms, and supportive care needsQual Life Res200918899199819657724
   PubMed Web of Science ®Google Scholar
• JandaMEakinEGBaileyLWalkerDTroyKSupportive care needs of people with brain tumours and their carersSupport Care Cancer200614111094110316710653
   PubMed Web of Science ®Google Scholar
• VelikovaGAwadNColes-GaleRWrightEPBrownJMSelbyPJThe clinical value of quality of life assessment in oncology practice-a qualitative study of patient and physician viewsPsychooncology200817769069818033733
   PubMed Web of Science ®Google Scholar
• BatePRobertGExperience-based design: from redesigning the system around the patient to co-designing services with the patientQual Saf Health Care200615530731017074863
   PubMed Web of Science ®Google Scholar
• IliffeSCurryLKharichaKDeveloping a Dementia Research Registry: a descriptive case study from North Thames DeNDRoN and the EVIDEM programmeBMC Med Res Methodol2011111921272296
   PubMedGoogle Scholar
• KottingPRossorMNMckeithIGO’BrienJTO’BreinJTHow dementia and neurodegenerative disease clinical research networks have enhanced research delivery in EnglandClin Investig201448687691
   Google Scholar
• LangbeckerDJandaMSystematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregiversFront Oncol20155125667919
   PubMed Web of Science ®Google Scholar
• BoeleFWvan Uden-KraanCFHilverdaKNeuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of timeJ Neurooncol2017134115716728550505
   PubMed Web of Science ®Google Scholar
• PiilKJakobsenJJuhlerMJardenMThe feasibility of a brain tumour websiteEur J Oncol Nurs201519668669326051074
   PubMed Web of Science ®Google Scholar
• National Patient Safety AgencyDelayed diagnosis of cancer: Thematic review2010 Available from: https://patientsafety.health.org.uk/resources/delayed-diagnosis-of-cancer-thematic-reviewAccessed January 11, 2019
   Google Scholar
• ChenAHMurphyEJYeeHFeReferral – a new model for integrated careN Engl J Med2013368262450245323802515
   PubMed Web of Science ®Google Scholar
• ErharterAGiesingerJKemmlerGImplementation of computer-based quality-of-life monitoring in brain tumor outpatients in routine clinical practiceJ Pain Symptom Manage201039221922920152586
   PubMed Web of Science ®Google Scholar
• KruseCSArguetaDALopezLNairAPatient and provider attitudes toward the use of patient portals for the management of chronic disease: a systematic reviewJ Med Internet Res2015172e4025707035
   PubMedGoogle Scholar