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BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.
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Cuidadores , Neoplasias , Humanos , Cuidadores/psicología , Reproducibilidad de los Resultados , Estudios Transversales , Encuestas y Cuestionarios , Neoplasias/tratamiento farmacológico , Medición de Resultados Informados por el PacienteRESUMEN
AIMS AND OBJECTIVES: To review hospital passports currently in use for people with intellectual disabilities in the UK and to make recommendations for practice. BACKGROUND: Hospital passports have been introduced internationally to address communication barriers that may limit access to appropriate health care for people with intellectual disabilities. They are viewed as promoting patient safety and person-centred care but their format may vary, they are not always used appropriately, and hence, their effectiveness may be limited. DESIGN: Qualitative content analysis. METHODS: Sixty hospital passports in use in the UK were reviewed against a coding frame by two members of the research team. Areas of interest included key patient and primary care information, support network details, consent and capacity, support required in relation to activities of daily living, length of the document and completion details. Results were entered into Excel. RESULTS: Considerable variation was found between documents in terms of terminology, length and format. Most included information regarding communication and support needs although some omitted important information such as allergies, risk assessment and need for reasonable adjustments. CONCLUSIONS: Considerable variation exists between current hospital passports, which may limit their effectiveness: key information required may not be included and/or it may not be easy to locate. Greater standardisation of documents is required, but this process should include input from all key stakeholders. RELEVANCE TO CLINICAL PRACTICE: Internationally nurses provide care for people with intellectual disabilities and others with communication difficulties. Hospital passports are one way of enhancing safety and person-centred care, need to be accessed and used as a basis for care planning. However, variation in format may limit this effectiveness and nurses should work with others to develop a more standardised approach, which better meets the needs of all stakeholders.
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Barreras de Comunicación , Hospitales/normas , Discapacidad Intelectual/enfermería , Seguridad del Paciente/normas , Atención Dirigida al Paciente/normas , Actividades Cotidianas , Humanos , Atención Dirigida al Paciente/organización & administración , Investigación Cualitativa , Reino UnidoRESUMEN
BACKGROUND: Neutropenia is a potentially serious side effect of chemotherapy and a major risk factor for infection, which can be life-threatening. It has been hypothesised that a low bacterial diet (LBD) can prevent infection and (infection-related) mortality in cancer patients receiving chemotherapy that causes episodes of neutropenia, but much remains unclear. This review is an update of a previously published Cochrane review. OBJECTIVES: The primary objective of this review was to determine the efficacy of an LBD versus a control diet in preventing infection and in decreasing (infection-related) mortality in adult and paediatric cancer patients receiving chemotherapy that causes episodes of neutropenia. Secondary objectives were to assess time to first febrile episode, need for empirical antibiotic therapy, diet acceptability and quality of life. SEARCH METHODS: We searched the following electronic databases: the Cochrane Central Register of Controlled Trials (CENTRAL) (2015, Issue 4), the Database of Abstracts of Reviews of Effects (DARE) (2015, Issue 4), PubMed (from 1946 to 4 May 2015), EMBASE (from 1980 to 4 May 2015) and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) (from 1981 to 4 May 2015).In addition, we searched the reference lists of relevant articles and conference proceedings of American Society of Hematology (ASH; from 2000 to 2015), European Bone Marrow Transplantation (EBMT; from 2000 to 2015), Oncology Nurses Society (ONS; from 2000 to 2015), International Society for Paediatric Oncology (SIOP; from 2000 to 2014), Multinational Association of Supportive Care in Cancer (MASCC; from 2000 to 2015), American Society of Clinical Oncology (ASCO; from 2000 to 2015), Interscience Conference of Antimicrobial Agents and Chemotherapy (ICAAC; from 2000 to 2015), European Society for Clinical Nutrition and Metabolism (ESPEN; from 2000 to 2015), American Society for Parenteral and Enteral Nutrition (ASPEN; from 2000 to 2015) and European Hematology Association (EHA; from 2000 to 2015). In May 2015, we scanned the National Institutes of Health Register via clinicaltrials.gov and the International Standard Randomised Controlled Trial Number (ISRCTN) Register (www.controlled-trials.com). SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing use of an LBD versus a control diet with regard to infection rate, (infection-related) mortality, time to first febrile episode, need for empirical antibiotic therapy, diet acceptability and quality of life in adult and paediatric cancer patients receiving chemotherapy causing episodes of neutropenia. DATA COLLECTION AND ANALYSIS: Two review authors independently performed study selection, 'Risk of bias' assessment and data extraction. We performed analyses according to the guidelines of the Cochrane Handbook for Systematic Reviews of Interventions. MAIN RESULTS: In the original version of this review, we identified three RCTs that assessed different intervention and control diets in 192 participants (97 randomised to intervention diet; 95 to control diet) with different types of malignancies. For the update, we identified no eligible new studies. Co-interventions (e.g. protective environment, antimicrobial prophylaxis, central venous catheter care, oral care, hygiene practices, colony-stimulating factors) and outcome definitions also differed between studies. In all included studies, it was standard policy to give empirical antibiotics (and sometimes also antimycotics) to (some of) the participants diagnosed with an infection. Two studies included adults and one study included children. In all studies, only a scant description of treatment regimens was provided. All studies had methodological limitations. Pooling of results of included studies was not possible. In two individual studies, no statistically significant differences in infection rate were identified between intervention and control diets; another study showed no significant differences between treatment groups in the number of chemotherapy cycles with an infection. None of the studies mentioned infection-related mortality, but in one study, no significant difference in overall survival was observed between treatment groups. Time from onset of neutropenia to fever, duration of empirical antibiotics and antimycotics, diet acceptability (i.e. following the diet easily and following the diet throughout all chemotherapy cycles) and quality of life were all evaluated by only one study; for all outcomes, no statistically significant differences between treatment arms were identified. AUTHORS' CONCLUSIONS: At the moment, no evidence from individual RCTs in children and adults with different malignancies underscores use of an LBD for prevention of infection and related outcomes. All studies differed with regard to co-interventions, outcome definitions and intervention and control diets. As pooling of results was not possible, and as all studies had serious methodological limitations, we could reach no definitive conclusions. It should be noted that 'no evidence of effect', as identified in this review, is not the same as 'evidence of no effect'. On the basis of currently available evidence, we are not able to provide recommendations for clinical practice. Additional high-quality research is needed.
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Antineoplásicos/efectos adversos , Infecciones Bacterianas/prevención & control , Micosis/prevención & control , Neoplasias/tratamiento farmacológico , Neutropenia/dietoterapia , Antibacterianos/uso terapéutico , Antifúngicos/uso terapéutico , Fiebre/dietoterapia , Humanos , Neutropenia/inducido químicamente , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
BACKGROUND AND PURPOSE: Outcome measurement has been shown to improve performance in several fields of healthcare. This understanding has driven a growing interest in value-based healthcare, where value is defined as outcomes achieved per money spent. While low back pain (LBP) constitutes an enormous burden of disease, no universal set of metrics has yet been accepted to measure and compare outcomes. Here, we aim to define such a set. PATIENTS AND METHODS: An international group of 22 specialists in several disciplines of spine care was assembled to review literature and select LBP outcome metrics through a 6-round modified Delphi process. The scope of the outcome set was degenerative lumbar conditions. RESULTS: Patient-reported metrics include numerical pain scales, lumbar-related function using the Oswestry disability index, health-related quality of life using the EQ-5D-3L questionnaire, and questions assessing work status and analgesic use. Specific common and serious complications are included. Recommended follow-up intervals include 6, 12, and 24 months after initiating treatment, with optional follow-up at 3 months and 5 years. Metrics for risk stratification are selected based on pre-existing tools. INTERPRETATION: The outcome measures recommended here are structured around specific etiologies of LBP, span a patient's entire cycle of care, and allow for risk adjustment. Thus, when implemented, this set can be expected to facilitate meaningful comparisons and ultimately provide a continuous feedback loop, enabling ongoing improvements in quality of care. Much work lies ahead in implementation, revision, and validation of this set, but it is an essential first step toward establishing a community of LBP providers focused on maximizing the value of the care we deliver.
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Dolor de la Región Lumbar/terapia , Evaluación de Resultado en la Atención de Salud/métodos , Manejo del Dolor/normas , Técnica Delphi , Humanos , Dimensión del Dolor/métodos , Satisfacción del Paciente , Factores de Riesgo , Resultado del TratamientoRESUMEN
BACKGROUND: Dubin-Johnson syndrome is a rare benign autosomal recessive condition that causes an isolated increase of conjugated bilirubin in the serum. Impaired biliary excretion is due to mutation in the multiple drug-resistance protein 2 gene (MRP2). CASE PRESENTATION: We describe the case of a 4-year-old girl being treated for acute lymphoblastic leukaemia who had a history of conjugated hyperbilirubinaemia and persistently elevated bilirubin levels on initiation of chemotherapy. During treatment for leukaemia, she was diagnosed with Dubin-Johnson syndrome for the underlying condition. Following administration of vincristine at the recommended dose of 1.5 mg/m2, an abnormally high vincristine exposure was observed (AUC > 200 µg/L*h), approximately 3 times higher than previously reported exposures in a comparable clinical setting. Vincristine dose reductions were applied on subsequent cycles of treatment and resulted in markedly reduced drug exposures, within the normal target range. CONCLUSION: This case provided a rare opportunity to assess the impact of MRP2 mutations associated with Dubin-Johnson syndrome on the pharmacokinetics of vincristine and strongly indicates that a marked dose reduction should be recommended. Clinicians should be made aware of the potential for altered drug disposition for agents such as vincristine in patients with this rare genetic condition.
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Ictericia Idiopática Crónica , Leucemia-Linfoma Linfoblástico de Células Precursoras , Femenino , Humanos , Niño , Preescolar , Ictericia Idiopática Crónica/tratamiento farmacológico , Ictericia Idiopática Crónica/genética , Ictericia Idiopática Crónica/complicaciones , Vincristina , Proteínas Asociadas a Resistencia a Múltiples Medicamentos/genética , Proteína 2 Asociada a Resistencia a Múltiples Medicamentos , Bilirrubina/metabolismo , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/genéticaRESUMEN
INTRODUCTION: Adoptive cell therapy (ACT) is a rapidly evolving field. Patient-reported outcomes (PROs) allow patients to report the impact of treatment on their quality of life during and after treatment. The systematic review aims to characterise the breadth of PROs utilised in ACT cancer care and provide guidance for the use of PROs in this patient population in the future. METHODS: A systematic search was conducted (MEDLINE, PsycINFO, Embase and CINAHL) in August 2021 by two reviewers. Search terms covered the following: "adoptive cell therapy", "patient-reported outcomes" and "cancer". Studies were included if they used a PRO measure to report the impact of ACT. The methodological quality of PROs was assessed. Forward and backward reference searching was conducted of any relevant papers. A quality grading scale was applied based on Cochrane and Revenson criteria for classification of high-quality studies. Key data from the studies and the included PROs was extracted by two researchers and tabulated. RESULTS: One-hundred nine papers were identified; 11 papers were included. The majority of studies were single-arm trials or observational studies. Twenty-two different PROs were identified; none was ACT specific. The PROMIS-29 and EQ-5D were most commonly used. Few studies collected PRO data in the first 1-2 weeks. Four studies followed patients up for over a year, and a further four studies followed patients for approximately 3 months. DISCUSSION: None of the PROs identified have been designed specifically for ACT. Appropriateness of existing instruments should be considered. It should be considered whether it is appropriate to collect data more frequently in the acute stage and then less frequently during follow-up. It should be considered if one tool is suitable at all time points or if the tool should be adapted depending on time since treatment. More research is needed to identify the exact timings of PRO assessments, and qualitative work with patients is needed to determine the most important issues for them throughout the treatment and follow-up.
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Neoplasias , Calidad de Vida , Humanos , Inmunoterapia Adoptiva , Neoplasias/terapia , Medición de Resultados Informados por el PacienteRESUMEN
BACKGROUND: Neutropenia is a potentially serious side effect of chemotherapy and a major risk factor for infections, which can be life-threatening. It has been hypothesised that a low bacterial diet (LBD) can prevent the occurrence of infections and (infection-related) mortality in cancer patients receiving chemotherapy causing episodes of neutropenia, but much remains unclear. OBJECTIVES: The primary objective was to determine the efficacy of an LBD versus a control diet in preventing the occurrence of infection and to decrease (infection-related) mortality in adult and paediatric cancer patients receiving chemotherapy causing episodes of neutropenia. Secondary objectives were to assess the time to first febrile episode, the need for empirical antibiotic therapy, diet acceptability and quality of life. SEARCH METHODS: We searched the following electronic databases: the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library, issue 3 2011), Database of Abstracts of Reviews of Effects (DARE) (The Cochrane Library, issue 3 2011), PubMed (from 1946 to 20 October 2011), EMBASE (from 1980 to 20 October 2011) and CINAHL (from 1981 to 20 October 2011). In addition, we searched several conference proceedings (from 2000 to either 2010 or 2011) and reference lists of relevant articles. To identify ongoing trials we contacted researchers working on this topic and we scanned the National Institute of Health Register and the ISRCTN Register (www.controlled-trials.com; searched May 2012). SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing the use of an LBD with a control diet with regard to infection rate, (infection-related) mortality, time to first febrile episode, need for empirical antibiotic therapy, diet acceptability, and quality of life in adult and paediatric cancer patients receiving chemotherapy causing episodes of neutropenia. DATA COLLECTION AND ANALYSIS: Two review authors independently performed the study selection, 'Risk of bias' assessment and data extraction. Analyses were performed according to the guidelines of the Cochrane Handbook for Systematic Reviews of Interventions. MAIN RESULTS: We identified three RCTs assessing different intervention and control diets in 192 patients (97 randomised to intervention diet; 95 to control diet) with different types of malignancies. Co-interventions (e.g. protective environment, antimicrobial prophylaxis, central venous catheter care, oral care, hygiene practices and colony-stimulating factors) and outcome definitions also differed between studies. In all included studies it was standard policy to give empirical antibiotics (and sometimes also antimycotics) to (some of) the patients diagnosed with an infection. Two studies included adults and one study included children. In all studies only a scant description of treatment regimens was provided. All studies had methodological limitations. Pooling of results of included studies was not possible. In two individual studies no statistically significant difference in infection rate between the intervention and control diet was identified; another study showed no significant difference in the number of chemotherapy cycles with an infection between the treatment groups. None of the studies mentioned infection-related mortality, but in one study no significant difference in overall survival between the treatment groups was observed. Time from onset of neutropenia to fever, the duration of empirical antibiotics and antimycotics, diet acceptability (i.e. following the diet easily and following the diet throughout all chemotherapy cycles) and quality of life were all evaluated by only one study; for all outcomes no statistically significant differences between the treatment arms was observed. AUTHORS' CONCLUSIONS: At the moment there is no evidence from individual RCTs in children and adults with different malignancies that underscores the use of an LBD for the prevention of infection and related outcomes. All studies differed with regard to co-interventions, outcome definitions, and intervention and control diets. Since pooling of results was not possible and all studies had serious methodological limitations, no definitive conclusions can be made. It should be noted that 'no evidence of effect', as identified in this review, is not the same as 'evidence of no effect'. Based on the currently available evidence, we are not able to give recommendations for clinical practice. More high-quality research is needed.
Asunto(s)
Antineoplásicos/efectos adversos , Infecciones Bacterianas/prevención & control , Micosis/prevención & control , Neoplasias/tratamiento farmacológico , Neutropenia/dietoterapia , Antibacterianos/uso terapéutico , Antifúngicos/uso terapéutico , Fiebre/dietoterapia , Humanos , Neutropenia/inducido químicamente , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
This study examined coping and general psychopathology as possible predictors of reduction of eating disorder symptomatology. Assessment took place at pre- and post-treatment for all eating disorder patients (N = 93). Eating pattern and behavior were measured, as well as BMI and general psychopathology. As hypothesized, the coping strategies and comorbidity of respondents at pre-treatment contributed significantly to their outcome scores, and behavior aspects associated with eating disorders. Active coping strategies and low levels of general psychopathology predicted better outcome scores. This implies that active coping strategies and low levels of accompanying psychopathology at pre-treatment could be indicators of good chances for reduction of eating disorder symptomatology such as emotional eating, bulimia symptomatology, ineffectiveness, and introceptive awareness.
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Adaptación Psicológica , Conducta Alimentaria/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/psicología , Trastornos de Alimentación y de la Ingestión de Alimentos/terapia , Psicopatología , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del Tratamiento , Adulto JovenRESUMEN
AIM: This paper focuses on adverse drug reactions and the potential for introduction of nurse-led medication monitoring. BACKGROUND: The prevention of patient harm caused by health-care organizations was accorded international priority over a decade ago, yet adverse drug reactions remain a significant treatment burden to patients. EVALUATION: This paper reviews the literature to summarize existing knowledge and understand treatment burdens associated with adverse drug reactions. KEY ISSUES: While epidemiological studies explore the magnitude and complex nature of adverse incidents in health-care organizations, the monitoring of prescribed medications and their adverse effects remains an area of concern. Nurse-led medication monitoring has been highlighted as an initiative to minimize unnecessary drug-related patient harm. CONCLUSION: This paper indicates that nurses are well-placed to monitor and reduce drug-related morbidity, and builds upon previous work which prioritizes the monitoring of prescribed medicine in a nurse-led adverse drug reaction profile. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse-led medication monitoring presents a unique opportunity to curtail unnecessary treatment burdens. However, important considerations including, patients' and professionals' time, added paperwork, nurse education and training and inter-professional communication need to be explored. Further work is now needed to establish the clinical gains and patient outcomes of nurse-led medication monitoring.
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Monitoreo de Drogas/métodos , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/enfermería , Rol de la Enfermera , Atención al Paciente/métodos , Seguridad , Competencia Clínica , Comunicación , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos/prevención & control , Escolaridad , HumanosRESUMEN
The study investigated the impact of victim sexual orientation, perpetrator gender, and participant gender on judgements toward a 15-year-old male victim of a depicted sexual assault. One hundred and eight-eight participants (97 male, 91 female) read a hypothetical scenario depicting the sexual assault of a 15-year-old male victim where the victim's sexual orientation and the perpetrator's gender were varied between subjects. Participants then completed a questionnaire assessing their attributions toward both the victim and the perpetrator. Results revealed that male participants blamed the victim more than female participants when the victim was both gay and attacked by a male perpetrator. All participants, regardless of gender, made more positive judgements toward the female as opposed to male perpetrator. Results are discussed in relation to gender role stereotypes and homophobia.
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Identidad de Género , Juicio , Delitos Sexuales/psicología , Conducta Sexual , Estereotipo , Adolescente , Adulto , Víctimas de Crimen/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
OBJECTIVES: The study aimed to explore patients' experiences of experimental cancer medicine (ECM) clinical trials. DESIGN: The study's design was qualitative. Two focus groups with patients were undertaken followed by semistructured interviews, to explore patients' experiences of ECM clinical trials. Interviews and focus groups were audiorecorded and transcribed verbatim. Data were analysed using thematic analysis. SETTING: A regional cancer centre (tertiary care) in North-West England. PARTICIPANTS: Twelve patients (aged 52-79) participated in one of the two focus groups and 22 patients (aged 42-83) participated in interviews. PRIMARY OUTCOME MEASURE: Patients' experiences of an ECM trial. RESULTS: Four main themes were identified from the analysis: decision making, information needs, the experience of trial participation and impact of trial participation. Subthemes are presented in the manuscript. CONCLUSION: To make fully informed decisions about trial participation, patients required the simplification of trial information and wanted more information about side effects, their response to trial treatment and the overall trial progress throughout the trial. Patients highlighted the need for improvement for the support provided to their family and friends.
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Investigación Biomédica , Neoplasias , Grupos Focales , Humanos , Oncología Médica , Neoplasias/terapia , Investigación CualitativaRESUMEN
This article describes a pilot telehealth project in Swansea where patients with heart failure and chronic obstructive pulmonary disease were provided with telehealth monitoring equipment. While early evaluation points to some potential economic benefits, supporting patient empowerment was a significant outcome.
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Insuficiencia Cardíaca/enfermería , Servicios de Atención de Salud a Domicilio/organización & administración , Enfermedad Pulmonar Obstructiva Crónica/enfermería , Autocuidado , Telemedicina/organización & administración , Insuficiencia Cardíaca/terapia , Humanos , Participación del Paciente , Proyectos Piloto , Evaluación de Programas y Proyectos de Salud , Enfermedad Pulmonar Obstructiva Crónica/terapia , Medicina Estatal/organización & administración , GalesRESUMEN
Advanced Therapy Medicinal Products (ATMPs) comprise novel cell, tissue and gene therapies and offer the potential of durable remissions for diseases where there is a high unmet clinical need. Once considered a niche area of academic research, ATMPs now represent one of the fastest-growing areas of clinical development. The field has seen a rapid expansion of academic and commercial entities successfully translating ATMP research into the clinic. This is reflected in projection that the global gene and cell therapy market will be worth US $11.96 billion by 2025. However, these treatments are complex to deliver and frequently do not fit naturally into established healthcare systems. In the United Kingdom (UK) there has been a long-standing interest in ATMP research and, in order to meet the ambition to act as an international hub of activity for delivery of ATMPs, a collaborative network of Advanced Therapy Treatment Centres (ATTCs) has been established. This review explores the challenges of delivery in the clinical setting, focussing on one form of ATMP, Adoptive Cell Therapy (ACT). We describe the strategy being implemented in the UK to optimise the roll-out of these exciting new therapies.
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OBJECTIVE: In recent years, a simultaneous care model for advanced cancer patients has been recommended meaning that palliative care services are offered throughout their cancer journey. To inform the successful adoption of this model in a phase I trial context, the study aimed to explore patients' care needs and their perceptions of specialist palliative care. METHODS: Semi-structured interviews were conducted with 10 advanced cancer patients referred to the Experimental Cancer Medicine team. Interviews were transcribed verbatim and thematically analysed with a framework approach to data organisation. RESULTS: Despite reporting considerable physical and psychological impacts from cancer and cancer treatment, participants did not recognise a need for specialist palliative care support. Understanding of the role of specialist palliative care was largely limited to end of life care. There was perceived conflict between considering a phase I trial and receiving specialist palliative care. Participants felt specialist palliative care should be introduced earlier and educational resources developed to increase patient acceptability of palliative care services. SIGNIFICANCE OF RESULTS: Patients with advanced cancer referred for phase I trials are likely to benefit from specialist palliative care. However, this study suggests patients may not recognise a need for support nor accept this support due to misperceptions about the role of palliative care. Developing a specific educational resource about specialist palliative care for this population would help overcome barriers to engaging with a simultaneous care model.
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Ensayos Clínicos Fase I como Asunto/psicología , Neoplasias/psicología , Cuidados Paliativos/psicología , Aceptación de la Atención de Salud/psicología , Sujetos de Investigación/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Investigación Cualitativa , Cuidado Terminal/psicologíaRESUMEN
The benefits of international immersion programs are multifactorial. These programs not only allow the sharing of nursing best practices and models of care and education, but they also increase collaborative opportunities to develop shared research ideas and innovation. This article presents the practicalities and considerations when undertaking an immersion program, with exemplars from the authors' experience and the unique and invaluable outcomes that were achieved.
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Bachillerato en Enfermería/métodos , Cooperación Internacional , Enfermería Oncológica/educación , Desarrollo de Personal , HumanosRESUMEN
Some rats spinally transected as neonates (ST rats) achieve weight-supporting independent locomotion. The mechanisms of coordinated hind-limb weight support in such rats are not well understood. To examine these we compared ST rats (with better than 60% of weight supported steps) and normal rats that were trained to cross an instrumented runway. Ground reaction forces, coordination of hind-limb and forelimb forces and the motions of the center of pressure (CoP) were assessed. Normal rats crossed the runway with a diagonal trot. On average hind-limbs bore about 80% of the vertical load carried by forelimbs (45% body weight on hind-limbs 55% on forelimbs), although this varied. Forelimbs and hind-limbs acted synergistically to generate decelerative and propulsive rostrocaudal forces, which averaged 15% of body weight with maximums of 50%. Lateral forces were very small (<8% of body weight). Center of pressure progressed in jumps along a straight line with mean lateral deviations <1 cm. ST rats hind-limbs bore about 60% of the vertical load of forelimbs (37% body weight on hind-limbs, 63% on forelimbs), significantly less compared to intact rats (P < 0.05). ST rats showed similar mean rostrocaudal forces, but with significantly larger maximum fluctuations of up to 80% of body weight (P < 0.05). Joint force-plate recordings showed forelimbs and hind-limb rostrocaudal forces in ST rats were opposing and significantly different from intact rats (P < 0.05). Lateral forces were approximately 20% of body weight and significantly larger than in normal rats (P < 0.05). Center of pressure zig-zagged, with mean lateral deviations of approximately 2 cm and a significantly larger range (P < 0.05). The haunches were also observed to roll more than normal rats. The locomotor strategy of injured rats using limbs in opposition was presumably less efficient but their complex gait was statically stable. Because forelimbs and hind-limbs acted in opposition, the trunk was held compressed. Force coordination was likely managed largely by the voluntary control in forelimbs and trunk.
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Adaptación Fisiológica , Extremidades/fisiopatología , Cojera Animal/fisiopatología , Locomoción , Traumatismos de la Médula Espinal/fisiopatología , Médula Espinal/fisiopatología , Adaptación Fisiológica/fisiología , Animales , Animales Recién Nacidos , Fenómenos Biomecánicos , Modelos Animales de Enfermedad , Extremidades/inervación , Miembro Anterior/inervación , Miembro Anterior/fisiopatología , Marcha/fisiología , Miembro Posterior/inervación , Miembro Posterior/fisiopatología , Articulaciones/inervación , Articulaciones/fisiología , Cojera Animal/etiología , Locomoción/fisiología , Fuerza Muscular/fisiología , Músculo Esquelético/inervación , Músculo Esquelético/fisiología , Plasticidad Neuronal/fisiología , Desempeño Psicomotor/fisiología , Ratas , Ratas Sprague-Dawley , Médula Espinal/crecimiento & desarrollo , Volición/fisiología , Soporte de Peso/fisiologíaRESUMEN
Patients with haematological malignancies have periods of neutropenia caused by the disease process and subsequent treatments, during which time they are at an increased risk of developing life threatening infections. Historically, many measures have been initiated to protect patients during this time. One such measure has been to provide a low bacterial diet to minimise the number of pathogens ingested from food. However, scientific literature lacks any substantial evidence confirming whether this is beneficial in the management of these patients while guidelines are often unclear and give conflicting advice. A detailed survey was carried out to examine the use of low bacterial diets considering criteria, conditions and specific dietary products. One hundred and eight questionnaires were completed, mainly European. Ninety-five (88%) centres used guidelines to advise practice for inpatients. Although 88% of the hospitals have guidelines, when these were examined there were enormous differences in both the guidelines themselves and the way in which they are implemented. The restrictions seen are varied and sometimes even contradict each other. Forty-eight (44%) of the respondents imposed restrictions on all products mentioned. Conditions for starting or stopping dietary restrictions were also diverse. This survey highlights the need to attempt to standardise dietary restrictions in a patient group for whom good nutrition is paramount.
Asunto(s)
Microbiología de Alimentos , Neoplasias Hematológicas/dietoterapia , Neutropenia/dietoterapia , Infecciones Oportunistas/prevención & control , Culinaria , Europa (Continente) , Servicio de Alimentación en Hospital , Encuestas de Atención de la Salud , Humanos , Guías de Práctica Clínica como Asunto , Trasplante de Células MadreRESUMEN
Oral mucositis (OM), which occurs in many patients with hematologic malignancies treated with high-dose therapy and stem cell transplantation, is associated with substantial clinical, economic, and quality-of-life (QOL) consequences. It has been associated with an increased need for total parenteral nutrition and opioid analgesics, prolonged hospital stays, and increased risk of infection. The research subgroup of the European Group for Blood and Marrow Transplantation Nurses Group surveyed nurses at transplantation centres for their thoughts about the clinical, QOL, and economic consequences of OM; tools for assessing OM; strategies for preventing and treating OM; and the need for the development and implementation of treatment guidelines. The responses from 46 centres, in 16 countries, indicated that most nurses (91%) believe OM has a large effect on patients' QOL. Nurses are not highly satisfied with current treatments for OM, but they believe the discomfort is reduced with oral care protocols and mouthwashes. Oral mucositis is routinely and frequently assessed, however there are inconsistencies in how it is managed. Most centres used unpublished, centre-specific guidelines, and the survey found that most nurses agreed that published national guidelines would be valuable for standardising the assessment and management of OM.
Asunto(s)
Factor 7 de Crecimiento de Fibroblastos/uso terapéutico , Neoplasias Hematológicas/terapia , Trasplante de Células Madre Hematopoyéticas/efectos adversos , Mucositis/etiología , Mucositis/enfermería , Europa (Continente) , Humanos , Evaluación en Enfermería , Guías de Práctica Clínica como Asunto , Calidad de Vida , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
Oral mucositis (OM) is an extremely debilitating side effect of certain high-dose chemotherapy and radiotherapy regimens. It is especially prevalent in patients with haematological malignancies who undergo myeloablative therapy and autologous haematopoietic stem cell transplantation (HSCT). Severe erosion of the lining of the oral cavity can make patients' everyday activities, including eating, drinking, swallowing, and talking, difficult or even impossible. Palifermin (Kepivance) was approved in Europe in 2005 for both prevention and treatment of this painful condition. It works at the epithelial level to help protect cells in the mouth and throat from the damage caused by chemotherapy and radiation, and to stimulate growth and development of new epithelial cells to build up the mucosal barrier. In the pivotal clinical trial, palifermin reduced the incidence, severity, and duration of severe OM. Palifermin was also well-tolerated; common adverse reactions reported included rash, pruritus, erythema, edema, pain, fever, arthralgia, mouth or tongue disorders, and taste alteration. In this article, nurses who are skilled in caring for patients undergoing HSCT review their clinical experience with palifermin, sharing practical advice about its reconstitution, dosing, and administration. By familiarising themselves with the use of palifermin, nurses can influence a shift in clinical practice away from OM symptom management to the more satisfactory situation of protecting patients against severe OM.