RESUMO
OBJECTIVE: This study assessed the impact of cancer-related neuropathic pain (CRNP) on patients and the importance of the patient-healthcare professional (HCP) relationship in diagnosis and management. METHODS: A quantitative online survey was conducted involving adult patients from 13 European countries who had been diagnosed with treatable cancer and experienced symptoms of peripheral neuropathy. RESULTS: Of 24,733 screened respondents, 549 eligible persons met the inclusion criteria and completed the questionnaire. Among individuals still experiencing pain, 75% rated it as 'severe' or 'moderate'. In addition, 61% reported a negative impact on day-to-day activities, and 30% said they had stopped working as a result. A third of respondents had received no diagnosis of CRNP despite reporting painful symptoms to an HCP. HCPs spending enough time discussing pain and understanding the impact on patients' lives were each associated with an increased likelihood of a formal CRNP diagnosis. Compared with individuals currently in active cancer treatment, cancer survivors were less likely to have a diagnosis of CRNP or regular pain conversations with HCPs. CONCLUSION: CRNP remains under-recognised despite its substantial impact on patients' lives. Clinical practice may be improved by strengthening patient-HCP relationships around pain discussions and increasing the focus on pain management among cancer survivors.
Assuntos
Dor do Câncer , Sobreviventes de Câncer , Neoplasias , Neuralgia , Adulto , Humanos , Inquéritos e Questionários , Pessoal de Saúde , Dor do Câncer/diagnóstico , Dor do Câncer/etiologia , Dor do Câncer/terapia , Neoplasias/complicações , Neoplasias/terapia , Neuralgia/diagnóstico , Neuralgia/etiologia , Neuralgia/terapiaRESUMO
The United Kingdom is recognised worldwide as a leader in genomics. The use of genomic technologies in the National Health Service (NHS) is expected to deliver faster and more accurate diagnoses, supporting personalized treatments to improve patient outcomes. The ambition of embedding genomic medicine in the diagnostic pathway requires involvement of the front-line clinical workforce, known as 'mainstreaming'. Nurses and midwives are the largest professionally qualified workforce in the National Health Service thus, it is anticipated that they will play key roles in mainstreaming. This study investigated the level of competence/confidence of practicing nurses and midwives to support mainstreaming and their perception of the importance of genomics in delivery of patient care. A literature review of genetics/genomics competency frameworks, semi structured interviews of lead nurses and stakeholders were conducted to identify relevant competencies needed for mainstreaming. These were then used to survey four cohorts of nurses (n = 153) across England in four consecutive years (2019-22). The confidence level of these professionals in all aspects of genomics was 2.07 ± 0.47 measured on a 5-point Likert scale (1"Low confidence"; 5 "High confidence"). Intriguingly, these professionals all appreciated the importance of genomics for their patient care (4.01 ± 0.06). Whilst the importance scores increased, the confidence scores declined at the time when major genomic transformation took place in the NHS (e.g.: launch of the Genomic Medicine Service, the National Genomic Test Directory). To bridge this gap, relevant genomic education can play key roles. However, nurses and midwives were found to be grossly underrepresented in formal genomic education courses offered by Health Education England Genomics Education Programme since 2014. This may result from the lack of direct applicability of the currently offered courses for their practice and role. Thematic analysis revealed that nurses and midwives wish to support their patients by providing more information on their condition, inheritance, and treatment options in combination with the use of relevant genetic counselling skills. This study identified easy to follow competencies for embedding genomics into routine clinical care. We propose a training programme that addresses the gap that nurses and midwives currently have, to enable them to harness genomic opportunities for patients and services.
RESUMO
It is vital to tell patients about potential long-term side effects after cancer diagnosis. Thousands of people who have already had the devastation of a cancer diagnosis might be completely unaware they are at increased risk of developing serious illnesses such as heart disease, lymphoedema or fertility issues.