All.Can UK | December 2018| First findings of All.Can patient survey revealed at UK Parliament event
More than a third (36 per cent) of cancer patients reported the greatest inefficiency as being their diagnosis finds the All. Can patient survey sought patients’ and carers’ perspectives on inefficiencies in cancer care. 40 per cent of people who participated in the survey had been initially diagnosed with something else. A similar proportion (34 per cent) also responded to say that they had a surplus of medication left over following treatment.
All.Can worked with Quality Health to develop the patient survey. Quality Health was responsible for all aspects of survey administration and data analysis, with input from All.Can national initiatives and the international research and evidence working group.
The UK piloted the All.Can patient survey ahead of roll-out in other countries throughout 2018. The survey closed in the UK in August, but continued running until 30 November in Australia, Belgium, Canada, France, Italy, Poland, Spain and Sweden. Data from an international version is also being analysed (Source: all-can.org).
The survey asked people with cancer across England for their views on their care, with 72,788 responding.
Key findings of the national cancer patient experience survey 2016 include:
87.5% of patients said they got their cancer tests at the right time, up from 86.6% last year
78% of respondents said that they were definitely involved as much as they wanted to be in decisions about their care
90% of respondents said they were given the name of a Clinical Nurse Specialist who would support them through their treatment. When asked how easy or difficult it had been to contact their Clinical Nurse Specialist, 86% of respondents said that it had been “quite easy” or “very easy”
88% of respondents said that, overall, they were always treated with dignity and respect while they were in hospital
94% of respondents said that hospital staff told them who to contact if they were worried about their condition or treatment after they left hospital
Snyder, C.F. et al. Cancer. Published online: 13 January 2017
Background: Patient-reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve interpretability.
Conclusions: The current results support presenting PRO data with higher = better directionality and threshold lines indicating normal versus concerning scores.
NHS England has published new cancer ratings providing a snapshot of how well different areas of the country are diagnosing and treating cancer and supporting patients. The overall rating for each clinical commissioning group is based on four indicators or metrics; early diagnosis, one year survival, 62 day waits after referral, and overall patient experience.
Limited data describe patient-reported outcomes (PROs) of localised oesophageal cancer treated with definitive chemoradiotherapy(CRT). The phase 2/3 SCOPE-1 trial assessed the effectiveness of CRT±cetuximab. The trial for the first time provided an opportunity to describe PROs from a multi-centre group of patients treated with CRT that are presented here.
Patients undergoing CRT±cetuximab within the SCOPE-1 trial (258 patients from 36 UK centres) completed generic-, disease- and treatment-specific health-related quality of life (HRQL) questionnaires (EORTC QLQ-C30, QLQ-OES18, Dermatology Life-Quality Index (DLQI)) at baseline and at 7, 13, 24, 52 and 104 weeks. Mean EORTC functional scale scores (>15 point change significant), DLQI scores (>4 point change significant) and proportions of patients (>15% significant) with ‘minimal’ or ‘severe’ symptoms are presented.
Questionnaire response rates were good. At baseline, EORTC functional scores were high (>75%) and few symptoms were reported except for severe problems with fatigue, insomnia and eating-related symptoms (e.g., appetite loss, dysphagia, dry mouth) in both groups(>15%). Functional aspects of health deteriorated and symptoms increased with treatment and by week 13 global quality of life, physical, role and social function significantly deteriorated and more problems with fatigue, dyspnoea, appetite loss and trouble with taste were reported. Recovery occurred by 6 months (except severe fatigue and insomnia in >15% of patients) and maintained at follow-up with no differences between groups.
CRT for localised oesophageal cancer has a significant detrimental impact on many aspects of HRQL; however, recovery is achieved by 6 months and maintained with the exception of persisting problems with severe fatigue and insomnia. The data suggest that the HRQL recovery after definitive CRT is quicker, and there is little lasting deficit compared with treatment including surgery. These data need to be compared with HRQL data from studies evaluating treatments including surgery for oesophageal cancer.