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)

Expected survival with and without second-line palliative chemotherapy: who wants to know?

Background According to surveys, many patients with advancedcancer wish to receive survival information.Objective This study invest igated information preferences by offer-ing patients a decision aid (DA) with infor mation on expected sur-vival for two treatment options: supportive care with or withoutsecond-line palliative chemotherapy. Predicto rs of accepting sur-vival information were explored.Design Eligible patients in this multicentre prospective study wereoffered secon d-line chemotherapy for advanced breast or colorectalcancer. A nurse presented a DA on second-line treatment andasked patients whether they desired information on (i) adverseevents, (ii) tumour response and (iii) survival. Data on 50 clinicaland psychosocial patient characteristics were collected from inclu-sion forms and patient questionnaires.Results Seventy-seven patients received a DA; median age62 years (range 32–80), 61% female, 77% colorectal cancer. Fifty-seven patients (74%; 95% CI 64–84) desired survival information.Four psychosocial characteristics (e.g . deliberative decision style)independently predicted information desire. However, the use ofthese characteristics to predict information desire hardly outper-formed a simple prediction rule.Conclusions Many patients desired information on expected sur-vival when deciding about second-line treatment. However, ourexploratory analysis indicated that patients desiring this informa-tion could not be identified based on their clinical or psychosocialcharacteristics. These findings can help encourage candid discus-sions about expected survival. Health professionals should be care-ful not to make implicit assumptions of information desire based on patient characteristics, but to explicitly ask patients if survivalinformation is desired, and act accordingly

Research barriers in children and young people with life-limiting conditions: a survey

Studies indicate research ethics committee (REC) approval and clinician gatekeeping are two key barriers in recruiting children and young people (CYP) with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs) and their families to research. OBJECTIVES: To explore the reported experiences, difficulties and proposed solutions of chief investigators (CIs) recruiting CYP with LLCs/LTIs and families in the UK. METHODS: 61 CIs conducting studies with CYP with LLCs/LTIs and their families, identified from the UK National Institute of Health Research portfolio, completed an anonymous, web-based questionnaire, including both closed and open-ended questions. Descriptive statistics and inductive and deductive coding were used to analyse responses. RESULTS: UK CIs cited limitations on funding, governance procedures including Research and Development, Site-Specific and REC approval processes, and clinician gatekeeping as challenges to research. CIs offered some solutions to overcome identified barriers such as working with CYP and their families to ensure their needs are adequately considered in study design and communicated to ethics committees; and designing studies with broad inclusion criteria and developing effective relationships with clinicians in order to overcome clinician gatekeeping. CONCLUSIONS: Many of the challenges and solutions reported by UK CIs have applicability beyond the UK setting. The involvement of clinicians, patients and their families at the inception of and throughout paediatric palliative care research studies is essential. Other important strategies include having clinician research champions and increasing the visibility of research. Further research on the perspectives of all stakeholders, leading to mutually agreed guidance, is required if care and treatment are to improve