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1.
Pancreatology ; 18(8): 962-970, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30292643

RESUMO

To enable standardisation of care of pancreatic cancer patients and facilitate improvement in outcome, the United Kingdom's National Institute for Health and Care Excellence (NICE) developed a clinical guideline for the diagnosis and management of pancreatic cancer in adults. Systematic literature searches, systematic review and meta-analyses were undertaken. Recommendations were drafted on the basis of the group's interpretation of the best available evidence of clinical and cost effectiveness. There was patient involvement and public consultation. Recommendations were made on: diagnosis; staging; monitoring of inherited high risk; psychological support; pain; nutrition management; and the specific management of people with resectable-, borderline-resectable- and unresectable-pancreatic cancer. The guideline committee also made recommendations for future research into neoadjuvant therapy, cachexia interventions, minimally invasive pancreatectomy, pain management and psychological support needs. These NICE guidelines aim to promote best current practice and support and stimulate research and innovation in pancreatic cancer.


Assuntos
Neoplasias Pancreáticas/diagnóstico , Neoplasias Pancreáticas/terapia , Adulto , Antineoplásicos/uso terapêutico , Terapia Combinada , Guias como Assunto , Humanos , Neoplasias Pancreáticas/tratamento farmacológico , Neoplasias Pancreáticas/cirurgia , Tomografia por Emissão de Pósitrons , Reino Unido
2.
J Parkinsons Dis ; 14(4): 809-821, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38701161

RESUMO

Background: Patient and public involvement and engagement (PPIE) in the design of trials is important, as participant experience critically impacts delivery. The Edmond J Safra Accelerating Clinical Trials in PD (EJS ACT-PD) initiative is a UK consortium designing a platform trial for disease modifying therapies in PD. Objective: The integration of PPIE in all aspects of trial design and its evaluation throughout the project. Methods: PwP and care partners were recruited to a PPIE working group (WG) via UK Parkinson's charities, investigator patient groups and participants of a Delphi study on trial design. They are supported by charity representatives, trial delivery experts, researchers and core project team members. PPIE is fully embedded within the consortium's five other WGs and steering group. The group's terms of reference, processes for effective working and PPIE evaluation were co-developed with PPIE contributors. Results: 11 PwP and 4 care partners have supported the PPIE WG and contributed to the development of processes for effective working. A mixed methods research-in-action study is ongoing to evaluate PPIE within the consortium. This includes the Patient Engagement in Research Scale -a quantitative PPIE quality measure; semi-structured interviews -identifying areas for improvement and overall impressions of involvement; process fidelity- recording adherence; project documentation review - identifying impact of PPIE on project outputs. Conclusions: We provide a practical example of PPIE in complex projects. Evaluating feasibility, experiences and impact of PPIE involvement in EJS ACT-PD will inform similar programs on effective strategies. This will help enable future patient-centered research.


Assuntos
Ensaios Clínicos como Assunto , Doença de Parkinson , Participação do Paciente , Humanos , Doença de Parkinson/terapia , Ensaios Clínicos como Assunto/normas , Projetos de Pesquisa , Participação da Comunidade , Reino Unido , Técnica Delphi
3.
Eur J Surg Oncol ; 47(3 Pt A): 495-502, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32600894

RESUMO

Pancreatic cancer is one of the most lethal malignancies and is characterised by high-unmet physical and psychological supportive care needs. Patient Reported Outcome Measures (PROMs) represent a patient centred approach to address the high unmet supportive care need and improve the quality of care. PROMs have the potential to inform patients about the quality of life and symptom trajectory for different treatment approaches so that they can fully participate in shared decisions about treatment. Embedding the collection of PROMs into routine practice alongside clinical alerts and directed symptom interventions is acceptable and feasible for people with pancreatic cancer and has the potential to reduce symptom burden. There is also limited information on survival, quality of life and the holistic impact of treatment for older pancreatic cancer patients, therefore, PROMs provide an opportunity to understand the impact of treatment on older patients and better inform shared treatment decision-making.


Assuntos
Neoplasias Pancreáticas/terapia , Medidas de Resultados Relatados pelo Paciente , Idoso , Tomada de Decisão Compartilhada , Humanos , Relações Médico-Paciente , Garantia da Qualidade dos Cuidados de Saúde , Qualidade de Vida , Neoplasias Pancreáticas
4.
Frontline Gastroenterol ; 10(3): 261-268, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31288251

RESUMO

Pancreatic cancer is the 11th most common cancer in the UK and has the worst prognosis of any tumour with minimal improvements in survival over recent decades. As most patients are either ineligible for surgery or may decline chemotherapy, the emphasis is on control of symptoms and management of complications such as poor nutritional status. The time period between informing the patient of their diagnosis and commencing cancer treatments presents a valuable opportunity to proactively identify and treat symptoms to optimise patients' overall well-being. The 'bridging clinic', delivered by a range of healthcare professionals from gastroenterologists to nurse practitioners, can provide this interface where patients are first informed of their diagnosis and second supportive therapies offered. In this article, we provide a structure for instituting such supportive therapies at the bridging clinic. The components of the clinic are summarised using the mnemonic INDASH (Information/Nutrition/Diabetes and Depression/Analgesia/Stenting/Hereditary) and each is discussed in detail below.

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