Emerging Tissue Economies: Personalized Immunotherapies and Therapeutic Value in Cancer.

New personalized immunotherapies hold considerable promise among cancer communities and are touted by many as the future of oncology. Described as a way to enhance the body's "natural defense" against cancer, they are made with antigens taken from patients' own tumor tissue. However, they also set up significant dilemmas for patients who are learning what it is like to participate in an emerging tissue economy and the stakes of exclusion from it. Taking brain tumors as my ethnographic case, I chart the valuations and exchanges that constitute this tissue economy as well as the dilemmas and disparities faced by patients.

Comparing the performance of the palliative prognostic (PaP) score with clinical predictions of survival: A systematic review.

BACKGROUND: In patients with advanced cancer, prognosis is usually determined using clinicians' predictions of survival (CPS). The palliative prognostic (PaP) score is a prognostic algorithm that was developed to predict survival in patients with advanced cancer. The score categorises patients into three risk groups in accordance with their probability of surviving for 30 days. The relative accuracy of PaP and CPS is unclear. DESIGN: This was a systematic review of MEDLINE, Embase, AMED, CINAHL Plus and the Cochrane Database of Systematic Reviews and Trials from inception up to June 2021. The inclusion criteria were studies in adults with advanced cancer reporting data on performance of both PaP and CPS. Data were extracted on accuracy of prognoses and where available on discrimination (area under the receiver operating characteristic curve or C-index) and/or diagnostic performance (sensitivity, specificity). RESULTS: Eleven studies were included. One study reported a direct comparison between PaP risk groups and equivalent risk groups defined by CPS and found that PaP was as accurate as CPS. Five studies reported discrimination of PaP as a continuous total score (rather than using the previously validated risk categories) and reported C-statistics that ranged from 0.64 (95% confidence interval [CI] 0.54, 0.74) up to 0.90 (95% CI 0.87, 0.92). Other studies compared PaP against CPS using non-equivalent metrics (e.g. comparing probability estimates against length of survival estimates). CONCLUSIONS: PaP risk categories and CPS are equally able to discriminate between patients with different survival probabilities. Total PaP scores show good discrimination between patients in accordance with their length of survival. The role of PaP in clinical practice still needs to be defined. TRIAL REGISTRATION: PROSPERO (CRD42021241074, 5th March 2021).

Cancer, COVID-19, and the need for critique.

In this open letter we examine the implications of the coronavirus disease 2019 (COVID-19) pandemic for cancer research and care from the point of view of the social studies of science, technology, and medicine. We discuss how the pandemic has disrupted several aspects of cancer care, underscoring the fragmentation of institutional arrangements, the malleable priorities in cancer research, and the changing promises of therapeutic innovation. We argue for the critical relevance of qualitative social sciences in cancer research during the pandemic despite the difficulties of immersive kinds of fieldwork. Social science research can help understand the ongoing, situated and lived impact of the pandemic, as well as fully underline its socially stratified consequences. We outline the risk that limiting and prioritising research activities according to their immediate clinical outcomes might have in the relational and longitudinal understanding of cancer practices in the UK. Finally, we alert against potential distortions that a "covidization" of cancer research might entail, arguing for the need to maintain a critical point of view on the pandemic.

Social and structural conditions for the avoidance of advance care planning in neuro-oncology: a qualitative study.

BACKGROUND: Primary brain tumours newly affect >260 000 people each year worldwide. In the UK, every year >10 000 people are diagnosed with a brain tumour while >5000 die annually from the disease. Prognoses are poor, cognitive deterioration common and patients have prolonged palliative needs. Advance care planning (ACP) may enable early discussion of future care decisions. Although a core commitment in the UK healthcare strategy, and the shared responsibility of clinical teams, ACP appears uncommon in practice. Evidence around ACP practice in neuro-oncology is limited. OBJECTIVES: We aimed to elicit key social and structural conditions contributing to the avoidance of ACP in neuro-oncology. DESIGN: A cross-sectional qualitative study design was used. SETTING: One tertiary care hospital in the UK. PARTICIPANTS: Fifteen healthcare professionals working in neuro-oncology participated in this study, including neuro-oncologists, neurosurgeons, clinical nurse specialists, allied healthcare professionals and a neurologist. METHOD: Semi-structured interviews were conducted with participants to explore their assumptions and experiences of ACP. Data were analysed thematically using the well-established framework method. RESULTS: Participants recognised the importance of ACP but few had ever completed formal ACP documentation. We identified eight key factors, which we suggest comprise three main conditions for avoidance: (1) difficulties being a highly emotive, time-intensive practice requiring the right 'window of opportunity' and (2) presence and availability of others; (3) ambiguities in ACP definition, purpose and practice. Combined, these created a 'culture of shared avoidance'. CONCLUSION: In busy clinical environments, 'shared responsibility' is interpreted as 'others' responsibility' laying the basis for a culture of avoidance. To address this, we suggest a 'generalists and specialists' model of ACP, wherein healthcare professionals undertake particular responsibilities. Healthcare professionals are already adopting this model informally, but without formalised structure it is likely to fail given a tendency for people to assume a generalist role.

Topographies of 'care pathways' and 'healthscapes': reconsidering the multiple journeys of people with a brain tumour.

People diagnosed with brain tumours enter new and unfamiliar worlds in which they must make complex and previously unimaginable decisions about care, treatment and how to live their lives. While decisions are increasingly based around care pathways, these are embedded in values that often fail to accord with those of patients. In this article, we examine the cases of people with a brain tumour and how they, their families and healthcare professionals navigate and intervene in the course of life-threatening disease. We use ethnographic data (2014-16) and modified social theory to highlight: (1) patients' interpretations of disease and care and how they might differ from dominant biomedical logics; (2) complexity and contingency in care decisions; (3) rapid and unanticipated change owing to disease and bodily change; and (4) how people find ways through a world that is continually in motion and which comes into being through the combined action of human and non-human agencies. Our modified 'healthscapes' approach provides an analytic that emphasises the constant precariousness of life with a brain tumour. It helps to explain the times when patients' feel bumped off the pathway and moments when they themselves step away to make new spaces for choice.

Experiences of healthcare professionals in the community dealing with the spiritual needs of children and young people with life-threatening and life-limiting conditions and their families: report of a workshop.

OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice. METHOD: We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. RESULTS: (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by 'being there' and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. CONCLUSIONS: The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.

Narratives of continuity among older people with late stage chronic kidney disease who decline dialysis.

Chronic and life-threatening conditions are widely thought to shatter the lives of those affected. In this article, we examine the accounts of 19 older people diagnosed with late stage chronic kidney disease who declined dialysis. Accounts were collected through in-depth interview in the United Kingdom (March-November, 2010). Drawing on a phenomenological approach, we focus particularly on the embodied and lived experience of the condition and on how participants constructed treatment modalities and approached treatment choice. We look toward contemporary elaborations of the conceptual framework of biographical disruption to illustrate how participants managed to contain the intrusion of illness and maintain continuity in their lives. We argue that three interactive phenomena mitigated the potential for disruption and allowed participants to maintain continuity: (a) the framing of illness as "old age"; (b) the prior experience of serious illness; and (c) the choice of the treatment with the least potential for disruption. We conclude that a diagnosis of chronic illness in late life does not inevitably shatter lives or engender biographical disruption. Instead, people are able to construct continuity owing to complex narrative interpretations of diagnosis, sensation and treatment choices.

Spiritual beliefs near the end of life: a prospective cohort study of people with cancer receiving palliative care.

OBJECTIVES: Despite growing research interest in spirituality and health, and recommendations on the importance of spiritual care in advanced cancer and palliative care, relationships between spiritual belief and psychological health near death remain unclear. We investigated (i) relationships between strength of spiritual beliefs and anxiety and depression, intake of psychotropic/analgesic medications and survival in patients with advanced disease; and (ii) whether the strength of spiritual belief changes as death approaches. METHODS: We conducted a prospective cohort study of 170 patients receiving palliative care at home, 97% of whom had a diagnosis of advanced cancer. Data on strength of spiritual beliefs (Beliefs and Values Scale [BVS]), anxiety and depression (Hospital Anxiety and Depression Scale [HADS]), psychotropic/analgesic medications, daily functioning, global health and social support were collected at recruitment then 3 and 10 weeks later. Mortality data were collected up to 34 months after the first patient was recruited. RESULTS: Regression analysis showed a slight increase in strength of spiritual belief over time approaching statistical significance (+0.16 BVS points per week, 95% CI [-0.01, 0.33], p = 0.073). Belief was unrelated to anxiety and depression (-0.15 points decrease in HADS for 10 points increased in BVS (95% CI [-0.57, 0.27], p = 0.49) or consumption of psychotropic medication). There was a non-significant trend for decreasing analgesic prescription with increasing belief. Mortality was higher over 6 months in participants with lower belief at recruitment. CONCLUSION: Results suggest that although religious and spiritual beliefs might increase marginally as death approaches, they do not affect levels of anxiety or depression in patients with advanced cancer.