The European Code of Cancer Practice

Lawler, Mark; Oliver, Kathy; Gijssels, Stefan; Aapro, Matti; Abolina, Agnese; Albreht, Tit; Erdem, Sema; Geißler, Jan; Jassem, Jacek; Karjalainen, Sakari; Vecchia, Carlo La; Lievens, Yolande; Meunier, Françoise; Morrissey, Mike; Naredi, Peter; Oberst, Simon; Poortmans, Philip; Price, Richard; Sullivan, Richard; Velikova, Galina; Vrdoljak, Eduard; Wilking, Nils; Yared, Wendy; Selby, Peter J.

doi:10.1016/j.jcpo.2021.100282

Cited by 32 publications

(13 citation statements)

References 126 publications

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“…From a psychosocial perspective, anxiety (36%), fear of recurrence (29%) and high rates of sleep difficulties (51%) are reported. An integrated, multi-disciplinary specialist rehabilitation approach focusing on patient-centred outcomes is indicated to address the substantial, complex, multi-dimensional rehabilitation needs of UGI cancer survivors and to enable them to achieve the best possible quality of life and to reintegrate into family, social and working life [ 9 , 10 , 11 , 12 ].…”

Section: Introductionmentioning

confidence: 99%

Telehealth Delivery of a Multi-Disciplinary Rehabilitation Programme for Upper Gastro-Intestinal Cancer: ReStOre@Home Feasibility Study

Brennan

Sadeghi

O’Neill

et al. 2022

Cancers

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Background: Telehealth has enabled access to rehabilitation throughout the pandemic. We assessed the feasibility of delivering a multi-disciplinary, multi-component rehabilitation programme (ReStOre@Home) to cancer survivors via telehealth. Methods: This single-arm mixed methods feasibility study recruited participants who had completed curative treatment for oesophago-gastric cancer for a 12-week telehealth rehabilitation programme, involving group resistance training, remotely monitored aerobic training, one-to-one dietetic counselling, one-to-one support calls and group education. The primary outcome was feasibility, measured by recruitment rates, attendance, retention, incidents, acceptability, Telehealth Usability Questionnaire (TUQ) and analysis of semi-structured interviews. Results: Characteristics of the twelve participants were: 65.42 ± 7.24 years; 11 male; 10.8 ± 3.9 months post-op; BMI 25.61 ± 4.37; received neoadjuvant chemotherapy 7/12; received adjuvant chemotherapy 4/12; hospital length of stay 16 days (median). Recruitment rate was 32.4%, and retention rate was 75%. Mean attendance was: education 90%; dietetics 90%; support calls 84%; resistance training 78%. Mean TUQ score was 4.69/5. Adaptations to the planned resistance training programme were required. Participants reported that ReStOre@Home enhanced physical and psychological wellbeing, and online delivery was convenient. Some reported a preference for in-person contact but felt that the online group sessions provided adequate peer support. Conclusion: Telehealth delivery of ReStOre@Home was most feasible in individuals with moderate to high levels of digital skills. Low level of digitals skills was a barrier to recruitment and retention. Participants reported high levels of programme adherence and participant satisfaction. Adaptations to future programmes, including introducing elements of in-person contact, are required.

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Section: Introductionmentioning

confidence: 99%

Telehealth Delivery of a Multi-Disciplinary Rehabilitation Programme for Upper Gastro-Intestinal Cancer: ReStOre@Home Feasibility Study

Brennan

Sadeghi

O’Neill

et al. 2022

Cancers

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“…3 4 5 6 7 Patients value high quality, written information to supplement and reinforce the verbal information given by clinicians. 3 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 This is the case even for those who do not want to participate in shared decision making. 9 12 …”

Section: Introductionmentioning

confidence: 99%

“…Provision of information can support ethical principles of patient autonomy and informed consent, facilitate shared decision making, and help to ensure that treatment is sensitive to, and meets the needs and priorities of, individuals 34567. Patients value high quality, written information to supplement and reinforce the verbal information given by clinicians 3891011121314151617181920212223. This is the case even for those who do not want to participate in shared decision making 912…”

Section: Introductionmentioning

confidence: 99%

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Davis

Wagner

Salcher‐Konrad

et al. 2023

BMJ

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ObjectiveTo evaluate the frequency with which relevant and accurate information about the benefits and related uncertainties of anticancer drugs are communicated to patients and clinicians in regulated information sources in Europe.DesignDocument content analysis.SettingEuropean Medicines Agency.ParticipantsAnticancer drugs granted a first marketing authorisation by the European Medicines Agency, 2017-19.Main outcome measuresWhether written information on a product addressed patients’ commonly asked questions about: who and what the drug is used for; how the drug was studied; types of drug benefit expected; and the extent of weak, uncertain, or missing evidence for drug benefits. Information on drug benefits in written sources for clinicians (summaries of product characteristics), patients (patient information leaflets), and the public (public summaries) was compared with information reported in regulatory assessment documents (European public assessment reports).Results29 anticancer drugs that received a first marketing authorisation for 32 separate cancer indications in 2017-19 were included. General information about the drug (including information on approved indications and how the drug works) was frequently reported across regulated information sources aimed at both clinicians and patients. Nearly all summaries of product characteristics communicated full information to clinicians about the number and design of the main studies, the control arm (if any), study sample size, and primary measures of drug benefit. None of the patient information leaflets communicated information to patients about how drugs were studied. 31 (97%) summaries of product characteristics and 25 (78%) public summaries contained information about drug benefits that was accurate and consistent with information in regulatory assessment documents. The presence or absence of evidence that a drug extended survival was reported in 23 (72%) summaries of product characteristics and four (13%) public summaries. None of the patient information leaflets communicated information about the drug benefits that patients might expect based on study findings. Scientific concerns about the reliability of evidence on drug benefits, which were raised by European regulatory assessors for almost all drugs in the study sample, were rarely communicated to clinicians, patients, or the public.ConclusionsThe findings of this study highlight the need to improve the communication of the benefits and related uncertainties of anticancer drugs in regulated information sources in Europe to support evidence informed decision making by patients and their clinicians.

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“…The uncertainty concerning treatment outcomes and the trade-offs between benefits and disadvantages make it essential to involve patients and include their values and preferences in the decision-making process [ 9 ]. Based on this, an increasing focus on patient involvement and shared decision making (SDM) is emerging within neuro-oncology, suggesting that neuro-oncology patients want to be involved in SDM regarding their treatment and care [ 10 , 11 , 12 , 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

Essen

Poulsen

Dahlrot

et al. 2022

IJERPH

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When high-grade gliomas recur, patients, their families, and clinicians face difficult medical decisions. There is no curable treatment, and the treatment options all come with a risk of complications and adverse effects. The patients are often cognitively affected, and they need tailored decision support. The objective of this study was to develop a patient decision aid (PtDA) targeted at patients with recurrent high-grade gliomas. Based on existing knowledge and the International Patient Decision Aids Standards, the PtDA was developed through an iterative process. The PtDA was alpha-tested by potential users to assess its acceptability and usability. The development team comprised three clinicians, two patients, two family members, and a researcher. The fifth version of the PtDA was submitted to the alpha test. Eleven patients, nine family members, and eleven clinicians assessed the PtDA and found it acceptable. Three changes were made during the alpha test. Most participants perceived the PtDA to prepare patients for decision making and improve consultations. The involvement of potential users was emphasized during the development and alpha test process. The PtDA was assessed as useful and acceptable by patients, family members, and clinicians in the decision-making situation of recurrent high-grade glioma.

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The European Code of Cancer Practice

Cited by 32 publications

References 126 publications

Telehealth Delivery of a Multi-Disciplinary Rehabilitation Programme for Upper Gastro-Intestinal Cancer: ReStOre@Home Feasibility Study

Telehealth Delivery of a Multi-Disciplinary Rehabilitation Programme for Upper Gastro-Intestinal Cancer: ReStOre@Home Feasibility Study

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Development of a Patient Decision Aid to Support Shared Decision Making for Patients with Recurrent High-Grade Glioma

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