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

Abstract

ObjectiveThe aim of this study was to determine the experience of patients with brain tumors and their carers across distinct parts of their treatment pathway and identify their views on potential service gaps in need of addressing.MethodsA structured survey was administered at patient workshops across the UK and online through a charity newsletter. Answers to closed questions were analyzed using descriptive statistics, and open questions were examined using techniques of inductive content analysis.ResultsA total of 136 survey responses were received, representing patients with a variety of diagnoses and geographical locations (30 counties). There was a wide range of opinions on the provision of current neuro-oncology services. Key themes identified included a perceived lack of information provision, a gap in postdischarge psychological and neuropsychological supports, and an unmet willingness for involvement in research.ConclusionThis national survey enhances our knowledge of current patient and carer experience within neuro-oncology services. A number of areas of unmet clinical need are highlighted providing a basis for informing future patient-centered service improvements and research.

What Do Patients and Their Carers Do to Support the Safety of Cancer Treatment and Care? A Scoping Review

“…Twelve studies used qualitative methodologies, 4 , 13 , 20 – 22 , 25 – 27 , 29 – 32 two adopted a mixed-methods approach, 23 , 28 and the remaining two purely quantitative methodology. 11 , 24 Most studies conducted semistructured interviews with individuals (n = 8), 4 , 13 , 20 – 22 , 25 , 27 , 32 focus groups (n = 1), 29 or both (n = 3).…”

“…Of all sixteen studies, eleven sampled patients, 4 , 11 , 13 , 20 , 24 – 26 , 28 , 30 – 32 eight sampled carers, 21 , 23 , 25 – 27 , 29 – 31 and five sampled HCPs. 4 , 23 , 25 , 26 , 31 All studies that sampled carers were identified as members of the patient’s family and one included an unrelated friend.…”

“…The degree to which patients received information was equivocal, with 2 articles reporting information to be adequate 24 , 26 and 3 articles reporting suboptimal access. 25 , 28 , 31 In addition, patients sought out sources of information 4 and approached HCPs. 24 Patients also asked questions 26 and guided decision making.…”

“… 24 Patients also asked questions 26 and guided decision making. 31 Patients directly influenced the safety of the treatment pathway by following up about results 28 and coordinating hospital transfers. 31 …”

“…Four studies reported patient involvement in well-being. 26 , 28 , 30 , 31 One study found that at 5 to 6 months after commencing treatment, patients spoke with HCPs about psychosocial issues including mood management. 26 Two studies 28 , 30 found that patients lacked psychological support.…”