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1.
J Adv Nurs ; 2021 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-34590738

RESUMO

AIMS: The overall aim of this evaluation was to look at the impact of the changes in working practices during the pandemic on nurses. This secondary analysis provided an evaluation of virtual care and being able/required to work from home. DESIGN: This was secondary analysis of an evaluation using semi-structured interviews. METHODS: Conducted at a single National Health Service (NHS) university hospital in the United Kingdom between May and July 2020. Forty-eight operational leads and nurses participated in semi-structured interviews which were digitally recorded, transcribed verbatim and analysed using a framework analysis. RESULTS: Two overarching themes emerged relating to the patient experience and nursing experience. There were both positive and negative elements associated with virtual care and remote working related to these themes. However, the majority of nurses found that virtual clinics were useful when proper resources were provided, and managerial strategies were put in place to support them. Participants felt that virtual care could benefit many but not all patient groups moving forward, and that flexibility around working from home would be desirable in the future. CONCLUSION: Virtual care and remote working were implemented to accommodate the restrictions imposed because of the pandemic. The benefits of these changes to nurses and patients support these being business as usual. However, clear policies are needed to ensure that nurses feel supported when working remotely and there are robust assessments in place to ensure virtual care is provided to patients who have access to the necessary technology. IMPACT: This was a study of the move to virtual care and remote working during the COVID-19 pandemic. Telemedicine and flexible working were not common in the NHS prior to the pandemic but the current evaluation supports the role out of these as standard care with policies in place to ensure that nurses and patients are appropriately supported.

2.
Science ; 373(6552): 337-342, 2021 07 16.
Artigo em Inglês | MEDLINE | ID: mdl-34437153

RESUMO

Piezoelectric biomaterials are intrinsically suitable for coupling mechanical and electrical energy in biological systems to achieve in vivo real-time sensing, actuation, and electricity generation. However, the inability to synthesize and align the piezoelectric phase at a large scale remains a roadblock toward practical applications. We present a wafer-scale approach to creating piezoelectric biomaterial thin films based on γ-glycine crystals. The thin film has a sandwich structure, where a crystalline glycine layer self-assembles and automatically aligns between two polyvinyl alcohol (PVA) thin films. The heterostructured glycine-PVA films exhibit piezoelectric coefficients of 5.3 picocoulombs per newton or 157.5 × 10-3 volt meters per newton and nearly an order of magnitude enhancement of the mechanical flexibility compared with pure glycine crystals. With its natural compatibility and degradability in physiological environments, glycine-PVA films may enable the development of transient implantable electromechanical devices.


Assuntos
Materiais Biocompatíveis/química , Eletricidade , Glicina/química , Álcool de Polivinil/química , Animais , Sobrevivência Celular , Células Cultivadas , Cristalização , Teoria da Densidade Funcional , Elasticidade , Humanos , Ligação de Hidrogênio , Próteses e Implantes , Ratos , Ratos Sprague-Dawley , Estresse Mecânico
3.
World J Pediatr Congenit Heart Surg ; : 21501351211010133, 2021 Jul 25.
Artigo em Inglês | MEDLINE | ID: mdl-34308717

RESUMO

Arteriovenous fistula (AVF) creation is used to palliate complex cyanotic heart diseases. We report an adult patient with AVF creation who subsequently developed severe left subclavian vein stenosis, causing significant left arm swelling. Covered stent placement successfully treated the venous stenosis, resulting in the normalization of his left arm swelling.

4.
Cancer Med ; 10(16): 5475-5487, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34219395

RESUMO

PURPOSE: Evidence suggests that the patient-reported outcome (PRO) content of cancer trial protocols is frequently inadequate and non-reporting of PRO findings is widespread. This qualitative study examined the factors influencing suboptimal PRO protocol content, implementation, and reporting, and use of PRO data during clinical interactions. METHODS: Semi-structured interviews were conducted with four stakeholder groups: (1) trialists and chief investigators; (2) people with lived experience of cancer; (3) international experts in PRO cancer trial design; (4) journal editors, funding panelists, and regulatory agencies. Data were analyzed using directed thematic analysis with an iterative coding frame. RESULTS: Forty-four interviews were undertaken. Several factors were identified that could influenced effective integration of PROs into trials and subsequent findings. Participants described (1) late inclusion of PROs in trial design; (2) PROs being considered a lower priority outcome compared to survival; (3) trialists' reluctance to collect or report PROs due to participant burden, missing data, and perceived reticence of journals to publish; (4) lack of staff training. Strategies to address these included training research personnel and improved communication with site staff and patients regarding the value of PROs. Examples of good practice were identified. CONCLUSION: Misconceptions relating to PRO methodology and its use may undermine their planning, collection, and reporting. There is a role for funding, regulatory, methodological, and journalistic institutions to address perceptions around the value of PROs, their position within the trial outcomes hierarchy, that PRO training and guidance is available, signposted, and readily accessible, with accompanying measures to ensure compliance with international best practice guidelines.

5.
J Am Soc Echocardiogr ; 34(8): 862-876, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33957250

RESUMO

BACKGROUND: Multisystem inflammatory syndrome in children (MIS-C) associated with coronavirus disease 2019 causes significant cardiovascular involvement, which can be a determinant of clinical course and outcome. The aim of this study was to investigate whether echocardiographic measures of ventricular function were independently associated with adverse clinical course and cardiac sequelae in patients with MIS-C. METHODS: In a longitudinal observational study of 54 patients with MIS-C (mean age, 6.8 ± 4.4 years; 46% male; 56% African American), measures of ventricular function and morphometry at initial presentation, predischarge, and at a median of 3- and 10-week follow-up were retrospectively analyzed and were compared with those in 108 age- and gender-matched normal control subjects. The magnitude of strain is expressed as an absolute value. Risk stratification for adverse clinical course and outcomes were analyzed among the tertiles of clinical and echocardiographic data using analysis of variance and univariate and multivariate regression. RESULTS: Median left ventricular apical four-chamber peak longitudinal strain (LVA4LS) and left ventricular global longitudinal strain (LVGLS) at initial presentation were significantly decreased in patients with MIS-C compared with the normal cohort (16.2% and 15.1% vs 22.3% and 22.0%, respectively, P < .01). Patients in the lowest LVA4LS tertile (<13%) had significantly higher C-reactive protein and high-sensitivity troponin, need for intensive care, and need for mechanical life support as well as longer hospital length of stay compared with those in the highest tertile (>18.5%; P < .01). Initial LVA4LS and LVGLS were normal in 13 of 54 and 10 of 39 patients, respectively. There was no mortality. In multivariate regression, only LVA4LS was associated with both the need for intensive care and length of stay. At median 10-week follow-up to date, seven of 36 patients (19%) and six of 25 patients (24%) had abnormal LVA4LS and LVGLS, respectively. Initial LVA4LS < 16.2% indicated abnormal LVA4LS at follow-up with 100% sensitivity. CONCLUSION: Impaired LVGLS and LVA4LS at initial presentation independently indicate a higher risk for adverse acute clinical course and persistent subclinical left ventricular dysfunction at 10-week follow-up, suggesting that they could be applied to identify higher risk children with MIS-C.


Assuntos
COVID-19/epidemiologia , Ecocardiografia/métodos , Ventrículos do Coração/diagnóstico por imagem , Pandemias , Síndrome de Resposta Inflamatória Sistêmica/diagnóstico , COVID-19/diagnóstico , Criança , Pré-Escolar , Progressão da Doença , Feminino , Humanos , Masculino , Estudos Retrospectivos , SARS-CoV-2 , Síndrome de Resposta Inflamatória Sistêmica/epidemiologia
6.
BMJ Open ; 11(4): e044854, 2021 04 07.
Artigo em Inglês | MEDLINE | ID: mdl-33827838

RESUMO

OBJECTIVE: Survival gains in teenagers and young adults (TYA) are reported to be lower than children and adults for some cancers. Place of care is implicated, influencing access to specialist TYA professionals and research.Consequently, age-appropriate specialist cancer care is advocated for TYA although systematic investigation of associated outcomes is lacking. In England, age-appropriate care is delivered through 13 Principal Treatment Centres (TYA-PTC). BRIGHTLIGHT is the national evaluation of TYA cancer services to examine outcomes associated with differing places and levels of care. We aimed to examine the association between exposure to TYA-PTC care, survival and documentation of clinical processes of care. DESIGN: Prospective cohort study. SETTING: 109 National Health Service (NHS) hospitals across England. PARTICIPANTS: 1114 TYA, aged 13-24, newly diagnosed with cancer between 2012 and 2014. INTERVENTION: Participants were assigned a TYA-PTC category dependent on the proportion of care delivered in a TYA-PTC in the first year after diagnosis: all care in a TYA-PTC (ALL-TYA-PTC, n=270), no care in a TYA-PTC (NO-TYA-PTC, n=359), and some care in a TYA-PTC with additional care in a children's/adult unit (SOME-TYA-PTC, n=419). PRIMARY OUTCOME: Data were collected on documented processes indicative of age-appropriate care using clinical report forms, and survival through linkage to NHS databases. RESULTS: TYA receiving NO-TYA-PTC care were less likely to have documentation of molecular diagnosis, be reviewed by a children's or TYA multidisciplinary team, be assessed by supportive care services or have a fertility discussion. There was no significant difference in survival according to category of care. There was weak evidence that the association between care category and survival differed by age (p=0.08) with higher HRs for those over 19 receiving ALL or SOME-TYA-PTC compared with NO-TYA-PTC. CONCLUSION: TYA-PTC care was associated with better documentation of clinical processes associated with age-appropriate care but not improved survival.


Assuntos
Neoplasias , Medicina Estatal , Adolescente , Adulto , Criança , Estudos de Coortes , Inglaterra/epidemiologia , Humanos , Neoplasias/terapia , Estudos Prospectivos , Adulto Jovem
7.
Br J Cancer ; 124(9): 1543-1551, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33750907

RESUMO

BACKGROUND: Oral and gut microbiomes have emerged as potential biomarkers in cancer. We characterised the oral and gut microbiomes in a prospective observational cohort of HPV+ oropharyngeal squamous cell carcinoma (OPSCC) patients and evaluated the impact of chemoradiotherapy (CRT). METHODS: Saliva, oropharyngeal swabs over the tumour site and stool were collected at baseline and post-CRT. 16S RNA and shotgun metagenomic sequencing were used to generate taxonomic profiles, including relative abundance (RA), bacterial density, α-diversity and ß-diversity. RESULTS: A total of 132 samples from 22 patients were analysed. Baseline saliva and swabs had similar taxonomic composition (R2 = 0.006; p = 0.827). Oropharyngeal swabs and stool taxonomic composition varied significantly by stage, with increased oral RA of Fusobacterium nucleatum observed in stage III disease (p < 0.05). CRT significantly reduced the species richness and increased the RA of gut-associated taxa in oropharyngeal swabs (p < 0.05), while it had no effect in stool samples. These findings remained significant when adjusted by stage, smoking status and antibiotic use. CONCLUSIONS: Baseline oral and gut microbiomes differ by stage in this HPV+ cohort. CRT caused a shift towards a gut-like microbiome composition in oropharyngeal swabs. Stage-specific features and the transitions in oral microbiome might have prognostic and therapeutic implications.


Assuntos
Quimiorradioterapia/efeitos adversos , Microbioma Gastrointestinal , Mucosa Bucal/microbiologia , Neoplasias Orofaríngeas/terapia , Papillomaviridae/isolamento & purificação , Infecções por Papillomavirus/complicações , Saliva/microbiologia , Carcinoma de Células Escamosas/patologia , Carcinoma de Células Escamosas/terapia , Carcinoma de Células Escamosas/virologia , Feminino , Seguimentos , Humanos , Masculino , Mucosa Bucal/efeitos dos fármacos , Mucosa Bucal/efeitos da radiação , Neoplasias Orofaríngeas/patologia , Neoplasias Orofaríngeas/virologia , Infecções por Papillomavirus/virologia , Prognóstico , Estudos Prospectivos , Saliva/efeitos dos fármacos , Saliva/efeitos da radiação
8.
Artigo em Inglês | MEDLINE | ID: mdl-33691496

RESUMO

Purpose: In England, specialist cancer services for adolescents and young adults (young people) aged 15-24 are provided in 13 specialist units, with additional care provided in child and adult cancer units in the region. As a result of specialization, health care professionals (HCPs) have refined their competence, to deliver holistic care that has become central to the culture of young people's cancer care. We sought to understand and describe how HCPs developed this competence. Methods: We conducted a multiple case study in four regions across England in 24 hospitals. Data were collected through observation of clinical areas, shadowing members of the multidisciplinary team, and semistructured interviews with young people. Data were analyzed thematically and triangulated to draw meaning applicable to a range of contexts. Results: Young people (n = 29) and HCP (n = 41) across 24 different care settings were interviewed. Holistic competence enabled HCPs to deliver care that considered the age-specific needs of young people, including social, emotional, and psychological needs, in accordance with their life stage and psychosocial development. Development of holistic competence was facilitated by the following four factors: the environment, the experience continuum, enthusiasm, and education. Conclusion: The four factors facilitating holistic competence were interlinked. Working in a specialist/dedicated environment for young people increased HCPs' exposure to young people. This enabled them to become experienced in young people's cancer care, supported through education and training. Without frequent exposure to young people, HCPs were less able to achieve holistic competence, the impact of which was acutely felt by young people.

10.
Trans R Soc Trop Med Hyg ; 115(2): 136-144, 2021 01 28.
Artigo em Inglês | MEDLINE | ID: mdl-33452881

RESUMO

Neglected tropical diseases (NTDs) are targeted for global control or elimination. Recognising that the populations most in need of medicines to target NTDs are those least able to support and sustain them financially, the pharmaceutical industry created mechanisms for donating medicines and expertise to affected countries through partnerships with the WHO, development agencies, non-governmental organisations and philanthropic donors. In the last 30 y, companies have established programmes to donate 17 different medicines to overcome the burden of NTDs. Billions of tablets, capsules, intravenous and oral solutions have been donated, along with the manufacturing, supply chains and research necessary to support these efforts. Industry engagement has stimulated other donors to support NTDs with funds and oversight so that the 'heath benefit' return on investment in these programmes is truly a 'best value in public health'. Many current donations are 'open-ended', promising support as long as necessary to achieve defined health targets. Extraordinary global health advances have been made in filariasis, onchocerciasis, trachoma, trypanosomiasis, leishmaniasis, schistosomiasis, intestinal parasites and others; and these advances are taking place in the context of strengthening health systems and meeting the global development goals espoused by the WHO. The pharmaceutical manufacturers, already strong collaborators in initiating or supporting these disease-targeted programmes, have committed to continuing their partnership roles in striving to meet the targets of the WHO's new NTD roadmap to 2030.


Assuntos
Oncocercose , Esquistossomose , Medicina Tropical , Saúde Global , Humanos , Doenças Negligenciadas/prevenção & controle
11.
Cancer Nurs ; 44(4): 288-294, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-32195707

RESUMO

BACKGROUND: The end of active cancer treatment is described as a stressful period for adolescents and young adults (AYAs). However, research evidence describing the experience of AYAs as they transition from active treatment into follow-up care is scarce. OBJECTIVE: We aimed to understand AYAs' experiences within the first 12 months of ending active treatment. METHODS: Data were collected using semistructured interviews, which were digitally recorded and transcribed verbatim. Qualitative analysis of transcripts was used to identify key themes/subthemes. RESULTS: Eleven AYAs (8 female participants), diagnosed with cancer aged 17 to 25 years and 19 to 26 years at point of interview, participated. At time of interview, 7 were within 6 months of treatment completion, and in 4 participants, treatment ended 6 to 12 months prior. Three main themes were identified: (1) challenges of social reintegration and self-identity, (2) expectations versus the lived experience of ending treatment, and (3) sudden loss of the safe "bubble" of treatment. CONCLUSIONS: Adolescents and young adults were underprepared for and challenged by the unexpected emotional and physical consequences of ending active cancer treatment. IMPLICATIONS FOR PRACTICE: Young people require information and support to prepare for ending active treatment and reintegration to everyday life. Preparation for the short- and long-term physical, social, and psychological impact of a cancer diagnosis even when treatment ends will assist young people in managing this transition. Further research is required to develop and test interventions to provide timely, structured, and equitable information and support at the end of treatment to better prepare AYAs for the challenges they may face as treatment ends.

12.
Transbound Emerg Dis ; 68(2): 397-416, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32564507

RESUMO

An ongoing, continually spreading, outbreak of African swine fever (ASF), following its identification in Georgia in 2007, has resulted in 17 European and 12 Asian countries reporting cases by April 2020, with cases occurring in both wild boar and domestic pigs. Curtailing further spread of ASF requires understanding of the transmission pathways of the disease. ASF is self-sustaining in the wild boar population, and they have been implicated as one of the main drivers of transmission within Europe. We developed a spatially explicit model to estimate the risk of infection with ASF in wild boar and pigs due to natural movement of wild boar that is applicable across the whole of Europe. We demonstrate the model by using it to predict the probability that early cases of ASF in Poland were caused by wild boar dispersion. The risk of infection in 2015 is computed due to wild boar cases in Poland in 2014, compared against reported cases in 2015, and then the procedure is repeated for 2015-2016. We find that long- and medium-distance spread of ASF (i.e. >30 km) is unlikely to have occurred due to wild boar dispersal, due in part to the generally short distances wild boar will travel (<20 km on average). We also predict the relative success of different control strategies in 2015, if they were implemented in 2014. Results suggest that hunting of wild boar reduces the number of new cases, but a larger region is at risk of ASF compared with no control measure. Alternatively, introducing wild boar-proof fencing reduces the size of the region at risk in 2015, but not the total number of cases. Overall, our model suggests wild boar movement is only responsible for local transmission of disease; thus, other pathways are more dominant in medium- and long-distance spread of the disease.


Assuntos
Febre Suína Africana/prevenção & controle , Febre Suína Africana/transmissão , Animais Selvagens , Sus scrofa , Febre Suína Africana/epidemiologia , Vírus da Febre Suína Africana , Animais , Ásia/epidemiologia , Comportamento Animal , Surtos de Doenças/veterinária , Europa (Continente)/epidemiologia , Probabilidade , Suínos
13.
Cancer Nurs ; 44(3): 235-243, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-31895170

RESUMO

BACKGROUND: Teenage and young adult cancer services in England are centralized in 13 principal treatment centers (TYA-PTC). These "specialist services" are designed to support caregivers as well as young people. OBJECTIVES: To evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC. METHODS: Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed 6 months after diagnosis. Comparisons were made according to where young people's care was delivered: all, some, or no care in a TYA-PTC. Principal components analysis reduced the questionnaire to 5 dimensions, which were used as dependent variables in subsequent regression analysis. RESULTS: Four hundred seventy-six responses of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle-aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions. CONCLUSIONS: Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs. IMPLICATIONS FOR PRACTICE: Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals, nurses need to optimize opportunities for caregivers to be involved in decision making.

15.
Hum Mutat ; 42(2): 164-176, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33252155

RESUMO

Biallelic mutations in G-Protein coupled receptor kinase 1 (GRK1) cause Oguchi disease, a rare subtype of congenital stationary night blindness (CSNB). The purpose of this study was to identify disease causing GRK1 variants and use in-depth bioinformatic analyses to evaluate how their impact on protein structure could lead to pathogenicity. Patients' genomic DNA was sequenced by whole genome, whole exome or focused exome sequencing. Disease associated variants, published and novel, were compared to nondisease associated missense variants. The impact of GRK1 missense variants at the protein level were then predicted using a series of computational tools. We identified twelve previously unpublished cases with biallelic disease associated GRK1 variants, including eight novel variants, and reviewed all GRK1 disease associated variants. Further structure-based scoring revealed a hotspot for missense variants in the kinase domain. In addition, to aid future clinical interpretation, we identified the bioinformatics tools best able to differentiate disease associated from nondisease associated variants. We identified GRK1 variants in Oguchi disease patients and investigated how disease-causing variants may impede protein function in-silico.

17.
EFSA J ; 18(Suppl 1): e181111, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33294050

RESUMO

The EUropean FOod Risk Assessment (EU-FORA) Fellowship work programme 'Livestock Health and Food Chain Risk Assessment', funded by EFSA was proposed by the Animal and Plant Health Agency (APHA), UK. A scientist with a PhD in Food Science was selected to work within the Biomathematics and Risk Research group, under the guidance of a senior risk assessor. The programme consisted of four different modules that covered a wide range of aspects related to risk assessment (RA). The aims, activities and conclusions obtained during the year are described in this article. The learning-by-doing approach in RA allowed the fellow to discover a broad pool of methodologies, tools and applications while developing his own knowledge in RA, as well as gaining scientific network for future collaborations in the field.

18.
Int Health ; 13(Suppl 1): S39-S43, 2020 12 22.
Artigo em Inglês | MEDLINE | ID: mdl-33349878

RESUMO

World Health Assembly Resolution 50.29, adopted in 1997, committed the World Health Organization (WHO) and its member states to eliminate lymphatic filariasis (LF) as a public health problem. In 2000, to support this ambitious goal and the health ministries in the >70 LF-endemic countries, the Global Programme to Eliminate Lymphatic Filariasis (GPELF) was created. The resulting WHO elimination strategy consists of two main components: to stop the spread of infection by interrupting transmission and to alleviate the suffering of affected populations (by controlling morbidity). The GPELF has brought together a broad global partnership of public and private actors, including three pharmaceutical companies with headquarters in three different continents. The medicine donations programmes from GlaxoSmithKline, MSD (trade name of Merck & Co., Kenilworth, NJ, USA) and Eisai have enabled significant achievements during the first 20 y of the GPELF and are positioned to provide essential contributions to the GPELF's goals for the next decade. As we celebrate the progress towards LF elimination during the GPELF's first 20 y, this article reflects on the factors that led to the creation of the three donation programmes, the contributions these programmes have made and some lessons learned along the way. We close by emphasizing our continued commitments to LF elimination and perspectives on the next decade.


Assuntos
Filariose Linfática , Filaricidas , Filariose Linfática/tratamento farmacológico , Filariose Linfática/prevenção & controle , Filaricidas/uso terapêutico , Saúde Global , Humanos , Saúde Pública , Organização Mundial da Saúde
19.
BMJ Open ; 10(11): e038471, 2020 11 26.
Artigo em Inglês | MEDLINE | ID: mdl-33243793

RESUMO

OBJECTIVES: In England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children's cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTC DESIGN: Longitudinal cohort study. SETTING: Hospitals delivering inpatient cancer care in England. PARTICIPANTS: 1114 young people aged 13 to 24 years newly diagnosed with cancer. INTERVENTION: Exposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. PRIMARY OUTCOME: Quality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis. RESULTS: Group mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups. CONCLUSIONS: Receipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Adulto , Criança , Inglaterra , Humanos , Estudos Longitudinais , Neoplasias/terapia , Estudos Prospectivos , Adulto Jovem
20.
BMJ Open ; 10(11): e038799, 2020 11 23.
Artigo em Inglês | MEDLINE | ID: mdl-33234628

RESUMO

OBJECTIVES: This study explored factors that play a role in psychological adaptation and recovery of young people with sarcoma. DESIGN: Qualitative study. SETTING: National Health Service hospitals in the UK. METHODS: Using purposive sampling, participants were recruited for semistructured interviews over the telephone or face to face in order to answer questions about how cancer impacted various domains of their life. Data were analysed using a framework approach. RESULTS: Thirty participants, aged 15-39 years with primary sarcoma diagnosis provided in-depth accounts of their experience. Emerging themes from the interviews were grouped into two overarching themes that relate to one's adaptation to illness: individual level and environmental level. The qualitative nature of our study sheds light on meaningful connections between various factors and their role in one's psychological adaptation to sarcoma. We devised a visual matrix to illustrate how risk and protective factors in adaptation vary between and within individuals. CONCLUSIONS: This study demonstrates that young people with sarcoma report an array of both positive and negative factors related to their illness experience. The route to recovery is a multifactorial process and a one-size-fits-all approach to psychosocial care proves inadequate. We propose that moving beyond the latent constructs of resilience and psychopathology towards a dynamic model of psychological adaptation and recovery in this population can result in optimisation of care. We offer some recommendations for professionals working with young people with sarcoma in clinic and research.


Assuntos
Sarcoma , Neoplasias de Tecidos Moles , Adaptação Psicológica , Adolescente , Adulto , Humanos , Pesquisa Qualitativa , Sarcoma/terapia , Medicina Estatal , Adulto Jovem
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