Pathways of disability-based discrimination in cancer care

Disabled people often report poorer health outcomes and increased barriers to accessing healthcare, compared to the general population. Our aim was to foreground lived experiences of disability-based discrimination, often indirect, and identify pathways through which this operates. We used a case study approach to explore the experiences of people with physical impairment accessing cancer services in England and Wales, from screening to therapy and follow-up, and investigated the complex and interacting nature of factors that affect their experiences. Participants described how they had to navigate a healthcare system that often was not responsive to their needs, leading to poor experiences of care. The barriers experienced by the participants operated at different levels. We identify three specific pathways through which discrimination is embodied: normativity expectations, lack of disability-awareness, and discontinuity of care. Our study is of particular importance to health professionals and policy makers, since there is limited evidence available on how people with physical impairment in the United Kingdom experience access to cancer care services. We argue that in order to advance the conversation on healthcare access for disabled people, it is important to reconceptualise the observed barriers as disability-based discrimination, reflective of broader structural processes, and to analyse in depth the pathways through which this discrimination operates

ACTIVE: a randomised feasibility trial of a behavioural intervention to reduce fatigue in women undergoing radiotherapy for early breast cancer: study protocol

Background Fatigue is rated as the most distressing side effect of radiotherapy treatment for curable breast cancer. About four in ten women treated experience fatigue, which can last for years after treatment. The impact of this debilitating tiredness is loss of independence and impaired physical and mental function. Our study will take a behavioural intervention with demonstrated effect in treating fatigue in a mixed group of chemotherapy patients and adapt it for women undergoing radiotherapy for early breast cancer. The purpose of this trial is to evaluate the feasibility of delivering the intervention in the radiotherapy pathway for patients at a high risk of fatigue and to explore participants’ experiences of the trial and intervention. Methods A pragmatic single-site non-blinded feasibility trial of a behavioural intervention. Main inclusion criteria are prescription of the UK standard 40 Gy in 15 fractions over 3 weeks of radiotherapy (± tumour bed boost) for early (stage 0–IIIa) breast cancer. The total projected sample size after attrition is 70. A previously developed fatigue risk score tool will be used to predict individual’s likelihood of experiencing fatigue. Thirty women predicted to be at a high risk of experiencing significant fatigue will be allocated in the ratio 2:1 to the behavioural intervention or education trial arms, respectively. These feasibility trial participants will be assessed at baseline, after 10 and 15 fractions of radiotherapy and 10 days, 3 weeks and 6 months after radiotherapy. A further 40 women predicted to be at a lower risk of fatigue will join a risk score validation group. Measures to assess feasibility include recruitment, retention and completion rates and variation in implementation of the intervention. Process evaluation with intervention providers and users includes fidelity and adherence checks and qualitative interviews to understand how changes in behaviour are initiated and sustained. Discussion This feasibility study collates data to both inform the progression to and design of a future definitive trial and to refine the intervention

Support and Assessment for Fall Emergency Referrals (SAFER 1) trial protocol. Computerised on-scene decision support for emergency ambulance staff to assess and plan care for older people who have fallen: evaluation of costs and benefits using a pragmatic cluster randomised trial

Background: Many emergency ambulance calls are for older people who have fallen. As half of them are left at home, a community-based response may often be more appropriate than hospital attendance. The SAFER 1 trial will assess the costs and benefits of a new healthcare technology - hand-held computers with computerised clinical decision support (CCDS) software - to help paramedics decide who needs hospital attendance, and who can be safely left at home with referral to community falls services. Methods/Design: Pragmatic cluster randomised trial with a qualitative component. We shall allocate 72 paramedics ('clusters') at random between receiving the intervention and a control group delivering care as usual, of whom we expect 60 to complete the trial. Patients are eligible if they are aged 65 or older, live in the study area but not in residential care, and are attended by a study paramedic following an emergency call for a fall. Seven to 10 days after the index fall we shall offer patients the opportunity to opt out of further follow up. Continuing participants will receive questionnaires after one and 6 months, and we shall monitor their routine clinical data for 6 months. We shall interview 20 of these patients in depth. We shall conduct focus groups or semi-structured interviews with paramedics and other stakeholders. The primary outcome is the interval to the first subsequent reported fall (or death). We shall analyse this and other measures of outcome, process and cost by 'intention to treat'. We shall analyse qualitative data thematically. Discussion: Since the SAFER 1 trial received funding in August 2006, implementation has come to terms with ambulance service reorganisation and a new national electronic patient record in England. In response to these hurdles the research team has adapted the research design, including aspects of the intervention, to meet the needs of the ambulance services. In conclusion this complex emergency care trial will provide rigorous evidence on the clinical and cost effectiveness of CCDS for paramedics in the care of older people who have fallen

Paramedic assessment of older adults after falls, including community care referral pathway : cluster randomized trial

Study objective We aim to determine clinical and cost-effectiveness of a paramedic protocol for the care of older people who fall. Methods We undertook a cluster randomized trial in 3 UK ambulance services between March 2011 and June 2012. We included patients aged 65 years or older after an emergency call for a fall, attended by paramedics based at trial stations. Intervention paramedics could refer the patient to a community-based falls service instead of transporting the patient to the emergency department. Control paramedics provided care as usual. The primary outcome was subsequent emergency contacts or death. Results One hundred five paramedics based at 14 intervention stations attended 3,073 eligible patients; 110 paramedics based at 11 control stations attended 2,841 eligible patients. We analyzed primary outcomes for 2,391 intervention and 2,264 control patients. One third of patients made further emergency contacts or died within 1 month, and two thirds within 6 months, with no difference between groups. Subsequent 999 call rates within 6 months were lower in the intervention arm (0.0125 versus 0.0172; adjusted difference –0.0045; 95% confidence interval –0.0073 to –0.0017). Intervention paramedics referred 8% of patients (204/2,420) to falls services and left fewer patients at the scene without any ongoing care. Intervention patients reported higher satisfaction with interpersonal aspects of care. There were no other differences between groups. Mean intervention cost was $23 per patient, with no difference in overall resource use between groups at 1 or 6 months. Conclusion A clinical protocol for paramedics reduced emergency ambulance calls for patients attended for a fall safely and at modest cost

Pathology pots; linking educational value

A large, accumulated collection of pathology specimens without descriptions and with minimal labelling is being developed as a shared, multi-centre teaching resource. The aims are to create a system simple to implement over a long period of time, simple to transfer between institutions, and simple for learners to work with. We are linking the physical pathology specimen with Internet-based information by tagging the pot with machine readable code. Pathologists review pathological specimens and make a short audio recording for each, describing the visible pathology, their causes, and often including a fictitious case that aids linking of symptoms to pathology for the learner. The audio recording and relevant links are added to a custom website’s database, generating a new dynamic web-page and a unique QR code that is printed and applied to the specimen’s case. Students can use a mobile device with a QR code scanning application to scan the code and be directed to a mobile-optimised website that holds the title for the pot, a small image and a 3–5 min audio description of the visible pathology. In this way the emphasis is applied to the pathology specimen itself, aiming to encourage students to engage with the physical tissue and not solely the internet-based information