Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 2.410
Filtrar
1.
Arch Dis Child ; 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38621857

RESUMO

OBJECTIVE: To estimate inpatient care costs of childhood severe pneumonia and its urban-rural cost variation, and to predict cost drivers. DESIGN: The study was nested within a cluster randomised trial of childhood severe pneumonia management. Cost per episode of severe pneumonia was estimated from a healthcare provider perspective for children who received care from public inpatient facilities. A bottom-up micro-costing approach was applied and data collected using structured questionnaire and review of the patient record. Multivariate regression analysis determined cost predictors and sensitivity analysis explored robustness of cost parameters. SETTING: Eight public inpatient care facilities from two districts of Bangladesh covering urban and rural areas. PATIENTS: Children aged 2-59 months with WHO-classified severe pneumonia. RESULTS: Data on 1252 enrolled children were analysed; 795 (64%) were male, 787 (63%) were infants and 59% from urban areas. Average length of stay (LoS) was 4.8 days (SD ±2.5) and mean cost per patient was US$48 (95% CI: US$46, US$49). Mean cost per patient was significantly greater for urban tertiary-level facilities compared with rural primary-secondary facilities (mean difference US$43; 95% CI: US$40, US$45). No cost variation was found relative to age, sex, malnutrition or hypoxaemia. Type of facility was the most important cost predictor. LoS and personnel costs were the most sensitive cost parameters. CONCLUSION: Healthcare provider cost of childhood severe pneumonia was substantial for urban located public health facilities that provided tertiary-level care. Thus, treatment availability at a lower-level facility at a rural location may help to reduce overall treatment costs.

2.
Cureus ; 16(3): e56313, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38629024

RESUMO

BACKGROUND: The coronavirus disease (COVID-19) pandemic has significantly impacted healthcare services globally, with particular challenges observed in maternal and child health (MCH) care. This study aimed to assess the impact of the pandemic on MCH services in northern India, focusing on key government programs. METHODS: Data were collected from four major MCH programs in India: Janani Suraksha Yojana (JSY), Janani Shishu Suraksha Karyakram (JSSK), Pradhan Mantri Surakshit Matritva Abhiyan (PMSMA), and the Universal Immunization Program (UIP). The study compared MCH service utilization and outcomes during the pandemic period (March-September 2020) with the same period in 2019. RESULTS: Preliminary findings indicated a significant reduction in the utilization of MCH services during the pandemic, with a decrease observed in institutional deliveries, antenatal care visits, and immunization coverage. For instance, institutional deliveries declined by 30% compared with the previous year, with a similar decrease observed in antenatal care visits. Immunization coverage also decreased by approximately 25%, indicating a substantial decline in preventive care services. Challenges in accessing essential treatments for sick infants have also been reported, with a 40% decrease in the utilization of free treatment services under the JSSK program. CONCLUSION: The COVID-19 pandemic has substantially impacted MCH services in northern India, highlighting the vulnerability of these essential health programs during public health emergencies. Addressing the challenges identified in this study is crucial to ensuring the continuity and resilience of MCH services in similar settings.

4.
Artigo em Inglês | MEDLINE | ID: mdl-38594063

RESUMO

As the third case in the acute safeguarding essentials in modern-day paediatrics series, this article focuses on sexual relationships, consent and confidentiality. Using the scenario of a 15-year-old girl presenting to the emergency department with a positive pregnancy test, it begins with a guide to taking a psychosocial history in young people followed by discussion about some of the legality surrounding sexual relationships in adolescents, issues around consent and considerations for confidentiality in this age group.

5.
Arch Dis Child ; 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589199

RESUMO

Obesity is a significant public health problem. Prevalence is rising in children and young people, with lifelong health impacts and implications for paediatric clinical practice. Obesity stigma is increasingly acknowledged as a problem within health services. Health professionals can inadvertently contribute to this stigma, which is harmful and in itself can promote weight gain. A complex web of factors contributes to obesity, and a simplistic approach exclusively focused on personal responsibility, diet and exercise is unhelpful. A more nuanced, sensitive and informed approach is needed, with careful use of language and non-judgemental partnership working.

6.
Arch Dis Child ; 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589200
7.
Orthod Craniofac Res ; 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38590218

RESUMO

OBJECTIVES: To explore parents' experiences and perceptions regarding engagement in health services for managing residual paediatric obstructive sleep apnoea (OSA) across levels of care. METHODS: Qualitative description guided study design. Data were collected through semi-structured interviews with parents of children diagnosed with residual OSA at a university-based sleep clinic. The relevant literature informed the interview guide and was piloted before data collection. Inductive, manifest content analysis was used to describe parents' perceptions and experiences using data-driven categories and sub-categories. Several strategies were employed to ensure rigour in this study. RESULTS: Eight interviews were conducted. Parents' views were organized into five categories: awareness of the sleep issue, interaction with non-sleep specialists, interaction with sleep specialists, interaction with dental professionals, and further actions and support. Parents reported several engagement issues due to their interactions with different care providers. These issues included having to personally identify and raise the sleep problem, feeling that care providers did not take this problem seriously, waiting for an extended period to be referred for sleep services, and receiving conflicting or insufficient treatment recommendations. Overall, parents perceived that their actions and the services received across levels of care were not effective enough to address paediatric OSA. CONCLUSION: Based on this exploratory qualitative descriptive research, along with developing evidence-based clinical guidelines for paediatric OSA screening and management tailored to different levels of care, strategies intended to improve the engagement of patients and care providers in addressing paediatric OSA should be developed and empirically tested.

8.
Preprint em Espanhol | SciELO Preprints | ID: pps-6764

RESUMO

Introduction: Extreme maternal morbidity (EMM) is an event of interest in public health that has an important impact when evaluating health services, since timely and quality care in a woman with a severe obstetric complication can prevent a fatal outcome. In an EAPB in the city of Cali during the 2019-2020 period, a need was evidenced to determine the behavior of the factors mostly associated with extreme maternal morbidity, this being a relevant study to support decision-making. Methodology: it is a type of observational analytical retrospective cohort study, we worked with a census of pregnant women registered in the insurer's nominal follow-up matrix, which is fed from various sources such as the single database of affiliates, SIVIGILA, RIPS among others, a characterization of the sociodemographic, clinical and health care factors was carried out by means of absolute and relative frequencies, later they were crossed in contingency tables to determine association by means of the chi square test and a regression model was carried out. binomial log to establish the factors that best explain EMM. Results: most of the pregnant women were between 18 and 35 years old, from the subsidized regime, from the urban area, with informal work, educational level of basic secondary, with a stable partner (married or in a free union), non-ethnic, (No perceived as indigenous, ROM or Afro-Colombian, were in their second or third pregnancy period, covered by IVE counseling and the psychoprophylactic course and began their prenatal care in the first trimester, and an incidence of 3,2% of EMM was estimated. Conclusions: the risk of EMM was higher in pregnant women without IVE advice, psychoprophylactic course, ultrasound, nutrition consultation, gynecology, iron sulfate, calcium or folic acid; also in adolescents, in those over 36 years of age, from rural areas, without a stable partner, ethnic, vulnerable population, primiparous, with a history of abortion, with weight/height alterations, with high obstetric risk, with Dx of HIV or gestational syphilis and with late start of prenatal care.


Introducción: La morbilidad materna extrema es un evento de interés en salud pública que tiene un impacto importante al evaluar los servicios de salud ya que una atención oportuna y de calidad en una mujer con una complicación obstétrica severa puede prevenir un desenlace fatal. En una EAPB en la ciudad de Cali durante el periodo 2019-2020 se evidencio una necesidad referente a determinar cuál es el comportamiento de los factores mayormente asociados a la morbilidad materna extrema, siendo este un estudio relevante para apoyar la toma de decisiones. Metodología: es un tipo de estudio observacional analítico de cohorte retrospectiva, se trabajó con un censo de las gestantes registradas en la matriz de seguimiento nominal de la aseguradora, que se alimenta de diversas fuentes como la base de datos única de afiliados, SIVIGILA, RIPS entre otras, se realizó una caracterización de los factores sociodemográficos, clínicos y de atención en salud  por medio de frecuencias absolutas y relativas, posteriormente se cruzaron en tablas de contingencias para determinar asociación por medio de la prueba chi cuadrado y se realizó un modelo de regresión log binomial para establecer los factores que mejor explican la Morbilidad Materna Extrema (MME). Resultados: en su mayoría las gestantes tenían entre 18 y 35 años, del régimen subsidiado, de la zona urbana, con trabajo informal, nivel educativo de básica secundaria, con pareja estable (casadas o en unión libre), no étnica, (No se perciben como indígena, ROM o afrocolombiana, cursaban su segundo o tercer periodo de gestación, con cobertura de asesoría de IVE y del curso psicoprofiláctico y iniciaron su control prenatal en el primer trimestre y se estimó una incidencia de 3,2% de MME. Conclusiones:  el riesgo de MME fue superior gestantes sin asesoría de IVE, curso psicoprofiláctico, ecografía, consulta de nutrición, ginecología, sulfato ferros, calcio o ácido fólico; además en adolescentes, en mayores de 36 años, de la zona rural, sin pareja estable, con pertenencia étnica, de población vulnerable, primigestantes, con antecedente de aborto, con alteraciones peso/talla, con alto riesgo obstétrico, con Dx de VIH o sífilis gestacional y con inicio tardío del control prenatal.

9.
Front Health Serv ; 4: 1335559, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38562653

RESUMO

Background: Although there is growing awareness that early childhood development programs are important for a sustainable society, there is a knowledge gap about how to implement such programs. Successful implementation requires attention to implementation drivers (competency, organization, and leadership) during all phases of the implementation. The purpose of this study was to describe cross-sectoral operational workgroups' perceptions of facilitators, barriers and solutions related to implementation drivers in the preparationphase of implementing an evidence-based early childhood home visiting program. Methods: Quantitative and qualitative data were collected from twenty-four participants, divided into 5 groups, during implementation planning workshops. The workshops were guided by a structured method informed by the principles of Motivational Interviewing and within a framework of implementation drivers. Groups sorted cards with statements representing implementation drivers according to perceptions of facilitators and barriers, and percentages were calculated for each type of implementation determinant, for each type of driver. The groups discussed their card sorting and wrote action plans to address barriers, yielding documentation that was analyzed using deductive qualitative content analysis. Results: A mixed-methods analysis resulted identification of facilitators, barriers, unknowns and solutions in two to three subcategories under each main category of implementation driver. A competent and confident workforce, and enthusiasm and commitment were key facilitators. Key barriers were unclear roles and responsibilities, and insufficient articulation of local vision and goals. Many factors were described as yet unknown. Specific solutions were generated to support the implementation. Conclusions: Our study furthers the scientific understanding of how to take evidence-based early childhood programs from research to practice within an implementation drivers framework. Facilitators, barriers and solutions in key areas during the preparation phase were identified with the help of a novel tool. The results provide useful knowledge for decision makers and organizations preparing similar initiatives in communities striving to attain sustainable development goals.

10.
Matern Child Nutr ; : e13644, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38586943

RESUMO

The Integrated Child Development Services (ICDS) programme has been the central focus of the POSHAN Abhiyaan to combat maternal and child malnutrition under the national nutrition mission in India. This paper examined the linkages between utilization of ICDS and underweight among children aged 6-59 months. The study utilized data from two recent rounds of the National Family Health Survey (NFHS-4 [2015-2016] and NFHS-5 [2019-2021]). Descriptive analyses were used to assess the change in utilization of ICDS and the prevalence of underweight at the national and state levels. Multivariable logistic regressions were performed to examine factors associated with the utilization of ICDS and underweight. Linkages between utilization of ICDS and underweight were examined using the difference-in-differences (DID) approach. Utilization of ICDS increased from 58% in 2015-2016 to 71% in 2019-2021. The prevalence of underweight decreased from 37% to 32% in the same period. Changes in ICDS utilization and underweight prevalence varied considerably across states, socioeconomic and demographic characteristics. Results from decomposition of DID models suggest that improvements in ICDS explained 9%-12% of the observed reduction in underweight children between 2016 and 2021, suggesting that ICDS made a modest but meaningful contribution in addressing undernutrition among children aged 6-59 months in this period.

12.
BMC Health Serv Res ; 24(1): 275, 2024 Mar 05.
Artigo em Inglês | MEDLINE | ID: mdl-38443936

RESUMO

BACKGROUND: Coronavirus disease 2019 disrupted the delivery of public maternal and child health services to caregivers of preschool children, leading to decreased opportunities for injury prevention education. We aim to 1) explore the timing, content, and methods of providing injury prevention information desired by pregnant women and mothers and 2) identify mothers who experienced difficulty in obtaining injury prevention information owing to reduced maternal and child health services. METHODS: From March 24 to 29, 2022, we conducted a population-based cross-sectional study and web-based survey. Of the registered monitors of the internet research company Rakuten Insight, 675 mothers raising their first child aged 0-2 during the COVID-19 period (February 2020 to March 2022) were included in the analysis. RESULTS: Over half of the mothers wanted injury prevention information throughout their pregnancy. They preferred receiving information through traditional face-to-face services provided by local governments, such as antenatal classes or checkups. However, 34.1% of mothers said they did not obtain the information they needed; this was particularly true of unemployed mothers, had children aged 0-1, and had children with illnesses requiring hospital visits. CONCLUSIONS: Mothers who could not obtain injury prevention information were originally disadvantaged mothers concerning access to information. The decrease in maternal and child health services may have widened this information gap. These findings can inform recommendations for caregivers, particularly those susceptible to information gaps during emergencies, and offer insights into future injury prevention education strategies.


Assuntos
COVID-19 , Serviços de Saúde da Criança , Gravidez , Criança , Pré-Escolar , Humanos , Feminino , COVID-19/epidemiologia , COVID-19/prevenção & controle , Estudos Transversais , Escolaridade , Mães
14.
Front Public Health ; 12: 1297889, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38420035

RESUMO

Given the importance of health to educational outcomes, and education to concurrent and future health, cross-systems approaches, such as the Whole School, Whole Community, Whole Child (WSCC) framework, seek to enhance services typically in K-12 settings. A major gap exists in cross-systems links with early care and education serving children birth to age 5. Both pediatric health systems and early family and child support programs, such as Early Head Start (EHS) and Head Start (HS), seek to promote and optimize the health and wellbeing of infants, toddlers, preschoolers, and their families. Despite shared goals, both EHS/HS and pediatric health providers often experience challenges in reaching and serving the children most in need, and in addressing existing disparities and inequities in services. This paper focuses on infant/toddler services because high-quality services in the earliest years yield large and lasting developmental impacts. Stronger partnerships among pedicatric health systems and EHS programs serving infants and toddlers could better facilitate the health and wellbeing of young children and enhance family strengths and resilience through increased, more intentional collaboration. Specific strategies recommended include strengthening training and professional development across service platforms to increase shared knowledge and terminology, increasing access to screening and services, strengthening infrastructure and shared information, enhancing integration of services, acknowledging and disrupting racism, and accessing available funding and resources. Recommendations, including research-based examples, are offered to prompt innovations best fitting community needs and resources.


Assuntos
Intervenção Educacional Precoce , Pobreza , Lactente , Humanos , Criança , Pré-Escolar , Serviços de Saúde , Atenção à Saúde
15.
J Interprof Care ; 38(3): 553-563, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38414288

RESUMO

We aimed to investigate whether using a shared electronic patient record (EPR-Youth) strengthened interprofessional teamwork among professionals in youth care and child healthcare. Using a mixed-methods design, we compared two partly overlapping samples of professionals, who completed questionnaires before the introduction of EPR-Youth (n = 117) and 24 months thereafter (n = 127). Five components of interprofessional teamwork (interdependence, newly created professional activities, flexibility, collective ownership of goals, and reflection on processes) were assessed for this study. Midway through the study period, focus groups were held with 12 professionals to examine how EPR-Youth contributed to interprofessional teamwork. Professionals reported significantly more flexibility after the introduction of EPR-Youth than before. Professionals scored slightly -but not significantly- more positively on the other components of teamwork. Focus group participants reported that using EPR-Youth strengthened their sense of interdependence and collective ownership of goals, and contributed to newly created professional activities. At baseline, levels of interprofessional teamwork differed between organizations. Focus group participants confirmed these differences and attributed them to differences in facilitation of interprofessional teamwork. Our findings suggest that using EPR-Youth can foster interprofessional teamwork. Organizational differences underline that implementing an EPR alone is inadequate: shared definitions of teamwork and organizational facilities are needed to strengthen interprofessional teamwork.


Assuntos
Registros Eletrônicos de Saúde , Equipe de Assistência ao Paciente , Criança , Humanos , Adolescente , Relações Interprofissionais , Atenção à Saúde , Grupos Focais
16.
Artigo em Inglês | MEDLINE | ID: mdl-38316546

RESUMO

OBJECTIVE: To describe clinical pathways for infants with congenital diaphragmatic hernia (CDH) and short-term outcomes. DESIGN: Retrospective observational cohort study using the UK National Neonatal Research Database (NNRD). PATIENTS: Babies with a diagnosis of CDH admitted to a neonatal unit in England and Wales between 2012 and 2020. MAIN OUTCOME MEASURES: Clinical pathways defined by place of birth (with or without colocated neonatal and surgical facilities), transfers, clinical interventions, length of hospital stay and discharge outcome. RESULTS: There were 1319 babies with a diagnosis of CDH cared for in four clinical pathways: born in maternity units with (1) colocated tertiary neonatal and surgical units ('neonatal surgical units'), 50% (660/1319); (2) designated tertiary neonatal unit and transfer to stand-alone surgical centre ('tertiary designated'), 25% (337/1319); (3) non-designated tertiary neonatal unit ('tertiary non-designated'), 7% (89/1319); or (4) non-tertiary unit ('non-tertiary'), 18% (233/1319)-the latter three needing postnatal transfers. Infant characteristics were similar for infants born in neonatal surgical and tertiary designated units. Excluding 149 infants with minimal data due to early transfer (median (IQR) 2.2 (0.4-4.5) days) to other settings, survival to neonatal discharge was 73% (851/1170), with a median (IQR) stay of 26 (16-44) days. CONCLUSIONS: We found that half of the babies with CDH were born in hospitals that did not have on-site surgical services and required postnatal transfer. Similar characteristics between infants born in neonatal surgical units and tertiary designated units suggest that organisation rather than infant factors influence place of birth. Future work linking the NNRD to other datasets will enable comparisons between care pathways.

17.
Arch Dis Child ; 2024 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-38346867

RESUMO

Sleep deprivation has a serious impact on physical and mental health. Children with neurodevelopmental disorders are frequently affected by chronic insomnia, defined as difficulty in either initiating sleep, maintaining sleep continuity or poor sleep quality which can lead to long-term detrimental effects on behaviour, learning and development.Interventions to address chronic insomnia in children include both pharmacological and non-pharmacological approaches. While some children unequivocally benefit from pharmacological treatment, recommendations suggest an intervention based on cognitive-behavioural techniques involving a thorough assessment of the child's sleep pattern, environment and psychosocial factors supporting the child to learn to self-soothe as first-line treatment. Evidence from sleep clinics delivered by trained community practitioners supports the efficacy of an intensive programme, whereby education, practical advice and follow-up support were key factors; however, these services are inconsistently resourced. In practice, sleep support interventions range from verbal advice given in clinics to healthy sleep leaflets to tailored and non-tailored parent-directed interventions. Delivery models include promotion of safe sleep within a wider health promotion context and targeted early intervention within sleep clinics delivered in health and community services or by the third sector but evidence for each model is lacking.We describe a comprehensive whole systems city-wide model of sleep support, ranging from awareness raising, universal settings, targeted support for complex situations to specialist support, delivered according to complexity and breadth of need. By building capacity and quality assurance into the existing workforce, the service has been sustainable and has continued to develop since its initial implementation in 2017. With increasing access to specialist sleep services across the UK, this model could become a widely generalisable approach for delivery of sleep services to children in the UK and lead to improved outcomes in those with severe sleep deprivation.

18.
Arch Dis Child ; 109(5): 402-408, 2024 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-38373775

RESUMO

OBJECTIVE: To quantify the hospital care for children born with a major congenital anomaly up to 10 years of age compared with children without a congenital anomaly. DESIGN, SETTING AND PATIENTS: 79 591 children with congenital anomalies and 2 021 772 children without congenital anomalies born 1995-2014 in six European countries in seven regions covered by congenital anomaly registries were linked to inpatient electronic health records up to their 10th birthday. MAIN OUTCOME MEASURES: Number of days in hospital and number of surgeries. RESULTS: During the first year of life among the seven regions, a median of 2.4% (IQR: 2.3, 3.2) of children with a congenital anomaly accounted for 18% (14, 24) of days in hospital and 63% (62, 76) of surgeries. Over the first 10 years of life, the percentages were 17% (15, 20) of days in hospital and 20% (19, 22) of surgeries. Children with congenital anomalies spent 8.8 (7.5, 9.9) times longer in hospital during their first year of life than children without anomalies (18 days compared with 2 days) and 5 (4.1-6.1) times longer aged, 5-9 (0.5 vs 0.1 days). In the first year of life, children with gastrointestinal anomalies spent 40 times longer and those with severe heart anomalies 20 times longer in hospital reducing to over 5 times longer when aged 5-9. CONCLUSIONS: Children with a congenital anomaly consume a significant proportion of hospital care resources. Priority should be given to public health primary prevention measures to reduce the risk of congenital anomalies.


Assuntos
Anormalidades Congênitas , Cardiopatias Congênitas , Gravidez , Criança , Feminino , Humanos , Europa (Continente)/epidemiologia , Estudos de Coortes , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/cirurgia , Parto , Sistema de Registros , Anormalidades Congênitas/epidemiologia
19.
Arch Dis Child ; 109(5): 422-427, 2024 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-38413196

RESUMO

OBJECTIVE: This study aimed to assess staff's experience of wearing the Health Service Executive (HSE) Rainbow Badge, a symbol of inclusion for LGBTQ+ (lesbian, gay, bisexual, transgender, queer/questioning; + signifying inclusivity of all sexual and gender identities) people, in a paediatric hospital setting. DESIGN: This was a cross-sectional multisite observational study. Participants completed an anonymous online survey, consisting of open and closed-ended questions covering domains of: responses to the badge from staff and patients; experience and impact of wearing the badge; and further training needs. SETTING: All five sites (four clinical and one non-clinical) pertaining to the Children's Health Ireland healthcare group. PARTICIPANTS: All staff, clinical and non-clinical, who had signed up the HSE Rainbow Badge initiative were eligible to participate. RESULTS: A total of 151 eligible participants across a mix of disciplines participated, 29 (19.2%) of whom were members of the LGBTQ+ community. Over half (58.9%, n=89) of respondents said they learnt something new about barriers to care for LGBTQ+ young people from the initiative. Staff reported mostly positive responses to the badge; 5.1% reported mixed/negative responses from colleagues, 4.5% reported mixed/negative responses from young people and 3.7% reported mixed/negative responses from families. Open-ended questions were analysed using a thematic analysis framework. Five themes emerged: pride, a symbol of safety and inclusion, impact on workplace culture, awareness of LGBTQ+ issues and more to do for LGBTQ+ patients. CONCLUSIONS: This study demonstrates that the Rainbow Badge initiative increases staff awareness of LGBTQ+ issues and helps to create a safe, inclusive environment for staff, young people and families.


Assuntos
Minorias Sexuais e de Gênero , Pessoas Transgênero , Feminino , Criança , Humanos , Adolescente , Estudos Transversais , Hospitais Pediátricos , Comportamento Sexual , Inquéritos e Questionários
20.
Arch Dis Child ; 109(4): 321-325, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38290777

RESUMO

OBJECTIVE: The concept of patient-centred care is central to the role of cancer multidisciplinary teams (MDTs) and particularly pertinent with the recent rise in number of virtual national advisory panels (NAPs) for childhood cancer in the UK. We sought to explore patient and caregiver views regarding MDT working and NAPs. METHODS: Three focus groups were undertaken between March 2019 and January 2020. RESULTS: Sixteen participants attended. All regarded MDTs and NAPs highly, while highlighting patient involvement in decision-making should not be diluted by this process. The importance of personalised consultations was stressed, acknowledging that information-sharing preferences may change with circumstance and time. Most participants felt they had not been actively involved in decisions, including those made following MDT or NAP discussions. Group suggestions to improve patient-centred care included a clinician knowing them presenting their case, referral proformas to include family-related factors and an advocate attending meetings to represent the patient/family view. CONCLUSION: Several changes have been driven forward by this work, including the modification of NAP referral proformas to include additional information. Patient and parent perspectives are now embedded into a best practice model for the NAPs to promote personalised recommendations at national level.


Assuntos
Neoplasias , Equipe de Assistência ao Paciente , Criança , Humanos , Neoplasias/terapia , Pesquisa Qualitativa , Grupos Focais , Reino Unido
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...