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1.
BMC Palliat Care ; 23(1): 208, 2024 Aug 19.
Artigo em Inglês | MEDLINE | ID: mdl-39160491

RESUMO

BACKGROUND: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer? METHODS: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes. RESULTS: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients). CONCLUSIONS: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.


Assuntos
Cuidadores , Cuidados Paliativos , Pesquisa Qualitativa , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Neoplasias/terapia , Neoplasias/psicologia , Adulto , Pacientes/psicologia , Entrevistas como Assunto/métodos
2.
BMC Palliat Care ; 22(1): 88, 2023 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-37407974

RESUMO

BACKGROUND: Psychological distress is common in patients with cancer; interfering with physical and psychological wellbeing, and hindering management of physical symptoms. Our aim was to systematically review published evidence on non-pharmacological interventions for cancer-related psychological distress, at all stages of the disease. METHODS: We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The review was registered on PROSPERO (CRD42022311729). Searches were made using eight online databases to identify studies meeting our inclusion criteria. Data were collected on outcome measures, modes of delivery, resources and evidence of efficacy. A meta-analysis was planned if data allowed. Quality was assessed using the Mixed Methods Appraisal Tool (MMAT). RESULTS: Fifty-nine studies with 17,628 participants were included. One third of studies included mindfulness, talking or group therapies. Half of all studies reported statistically significant improvements in distress. Statistically significant intervention effects on distress were most prevalent for mindfulness techniques. Four of these mindfulness studies had moderate effect sizes (d = -0.71[95% CI: -1.04, -0.37] p < 0.001) (d = -0.60 [95% CI: -3.44, -0.89] p < 0.001) (d = -0.77 [CI: -0.146, -1.954] p < 0.01) (d = -0.69 [CI: -0.18, -1.19] p = 0.008) and one had a large effect size (d = -1.03 [95% CI: -1.51, -0.54] p < 0.001). Heterogeneity of studies precluded meta-analysis. Study quality was variable and some had a high risk of bias. CONCLUSIONS: The majority of studies using a mindfulness intervention in this review are efficacious at alleviating distress. Mindfulness-including brief, self-administered interventions-merits further investigation, using adequately powered, high-quality studies. SYSTEMATIC REVIEW REGISTRATION: This systematic review is registered on PROSPERO, number CRD42022311729.


Assuntos
Atenção Plena , Neoplasias , Angústia Psicológica , Humanos , Neoplasias/complicações , Neoplasias/terapia , Neoplasias/psicologia
3.
BMC Palliat Care ; 22(1): 136, 2023 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-37705048

RESUMO

BACKGROUND: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams. METHODS: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA). RESULTS: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate-the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale). CONCLUSIONS: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Análise Fatorial , Grupos Focais , Recompensa
4.
Palliat Support Care ; : 1-10, 2023 Nov 16.
Artigo em Inglês | MEDLINE | ID: mdl-37970659

RESUMO

OBJECTIVES: This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work. METHODS: The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory. RESULTS: There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = -0.31, p = 0.115). Burnout did not predict work engagement (b = -0.09, p = 0.194). SIGNIFICANCE OF RESULTS: The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

5.
Prev Med ; 154: 106872, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34762964

RESUMO

We undertook a systematic review to synthesise the data on attitudes and behaviour towards the use of aspirin for cancer prevention, and healthcare providers' attitudes towards implementing aspirin in practice. Searches were carried out across 12 databases (e.g. MEDLINE, EMBASE). We used the Mixed Methods Appraisal Tool to evaluate study quality, and conducted a narrative synthesis of the data. The review was pre-registered (PROSPERO: CRD42018093453). Thirty-eight studies were identified. Uptake and adherence data were all from trials. Trials recruited healthy participants, those at higher risk of cancer, and those with cancer. Four studies reported moderate to high (40.9-77.7%) uptake to an aspirin trial among people who were eligible. Most trials (18/22) reported high day-to-day adherence (≥80%). Three trials observed no association between gender and adherence. One trial found no association between adherence and colorectal cancer risk. Three studies reported moderate to high (43.6-76.0%) hypothetical willingness to use aspirin. Two studies found that a high proportion of healthcare providers (72.0-76.0%) perceived aspirin to be a suitable cancer prevention option. No qualitative studies were identified. The likelihood that eligible users of aspirin would participate in a trial evaluating the use of aspirin for preventive therapy was moderate to high. Among participants in a trial, day-to-day adherence was high. Further research is needed to identify uptake and adherence rates in routine care, the factors affecting aspirin use, and the barriers to implementing aspirin into clinical care.


Assuntos
Aspirina , Neoplasias , Aspirina/uso terapêutico , Atitude do Pessoal de Saúde , Pessoal de Saúde , Humanos , Neoplasias/prevenção & controle
6.
Hered Cancer Clin Pract ; 20(1): 30, 2022 Aug 23.
Artigo em Inglês | MEDLINE | ID: mdl-35999639

RESUMO

BACKGROUND: The National Institute for Health and Care Excellence (NG151) recommends considering daily aspirin for people with Lynch syndrome to reduce colorectal cancer risk. However, deciding whether to initiate aspirin could be a complex decision for patients and their healthcare providers, as both the potential benefits and harms need to be considered. METHODS: We conducted semi-structured interviews to explore the barriers and facilitators to using aspirin for preventive therapy. We recruited 15 people with Lynch syndrome, and 23 healthcare providers across multiple professions in primary, and specialist care (e.g. clinical genetics) in the United Kingdom. Interview schedules were informed by the Theoretical Domains Framework. RESULTS: There were three themes: 1) Considering potential harms and benefits; 2) Healthcare pathway; 3) Patients' level of interest in aspirin. All healthcare providers, across primary and specialist care, viewed general practitioners (GPs) as being responsible for prescribing and overseeing the use of aspirin. However, GPs were unfamiliar with aspirin for preventive therapy, and concerned about prescribing at higher doses (300-600 mg). To support decision-making, GPs wanted clarification from specialist clinicians on the evidence and dose to prescribe. Not all participants with Lynch syndrome received information on aspirin from their healthcare provider, and several were unsure who to discuss aspirin with. GPs were more inclined to prescribe aspirin for patients with expressed preferences for the medication, however several patients were uncertain and wanted further guidance. CONCLUSIONS: Coordinated and multilevel strategies are needed, addressing the needs of both GPs and people with Lynch syndrome, to ensure consistent implementation of national guidance on aspirin for preventive therapy.

7.
Breast Cancer Res Treat ; 188(3): 703-712, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33733302

RESUMO

PURPOSE: Women's worry about developing breast cancer may influence their decision to use preventive therapy. However, the direction of this relationship has been questioned. We prospectively investigated the relationship between breast cancer worry and uptake of preventive therapy. The socio-demographic and clinical factors associated with high breast cancer worry were also investigated. METHODS: Women at increased risk of developing breast cancer were recruited from clinics across England (n = 408). Participants completed a survey on their breast cancer worry, socio-demographic and clinical factors. Uptake of tamoxifen was recorded at 3 months (n = 258 women, 63.2%). Both primary and sensitivity analyses were conducted using different classifications of low, medium and high worry. RESULTS: 39.5% of respondents reported medium breast cancer worry at baseline and 21.2% reported high worry. Ethnic minority women were more likely to report high worry than white women (OR = 3.02, 95%CI 1.02, 8.91, p = 0.046). Women educated below degree level were more likely to report high worry than those with higher education (OR = 2.29, 95%CI 1.28, 4.09, p = 0.005). No statistically significant association was observed between worry and uptake. In the primary analysis, fewer respondents with medium worry at baseline initiated tamoxifen (low worry = 15.5%, medium = 13.5%, high = 15.7%). In the sensitivity analysis, participants with medium worry reported the highest uptake of tamoxifen (19.7%). CONCLUSIONS: No association was observed between worry and uptake, although the relationship was affected by the categorisation of worry. Standardised reporting of the classification of worry is warranted to allow transparent comparisons across cohorts.


Assuntos
Neoplasias da Mama , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/prevenção & controle , Inglaterra/epidemiologia , Etnicidade , Feminino , Humanos , Grupos Minoritários , Estudos Prospectivos , Reino Unido/epidemiologia
8.
Eur J Cancer Care (Engl) ; 30(1): e13340, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33051957

RESUMO

OBJECTIVES: The aim of this paper was to identify current barriers, facilitators and experiences of raising and discussing palliative care with people with advanced cancer. METHODS: Semi-structured interviews were conducted with patients with advanced cancer and healthcare professionals (HCPs). Patients were included who had and had not been referred to palliative care. Transcripts were analysed using framework analysis. RESULTS: Twenty-four patients and eight HCPs participated. Two overarching themes and five sub-themes emerged: Theme one-referral process: timing and triggers, responsibility. Theme two-engagement: perception of treatment, prognosis and palliative care, psychological and emotional preparedness for discussion, and understanding how palliative care could benefit present and future care. CONCLUSION: There is a need to identify suitable patients earlier in their cancer trajectory, address misconceptions about palliative care, treatment and prognosis, and better prepare patients and HCPs to have meaningful conversations about palliative care. Patients and HCPs need to establish and communicate the relevance of palliative care to the patient's current and future care, and be clear about the referral process.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pesquisa Qualitativa , Encaminhamento e Consulta
9.
Nephrol Dial Transplant ; 35(12): 2072-2082, 2020 12 04.
Artigo em Inglês | MEDLINE | ID: mdl-32830240

RESUMO

BACKGROUND: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient-professional shared decision-making between dialysis and conservative management treatment pathways. METHODS: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. RESULTS: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name 'conservative management'. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. CONCLUSIONS: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.


Assuntos
Tomada de Decisões , Técnicas de Apoio para a Decisão , Serviços de Saúde/estatística & dados numéricos , Nefropatias/terapia , Participação do Paciente/psicologia , Humanos , Agências Internacionais , Nefropatias/psicologia , Revisões Sistemáticas como Assunto
10.
Palliat Med ; 34(8): 989-1005, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32507025

RESUMO

BACKGROUND: Despite increasing evidence of the benefits of early access to palliative care, many patients do not receive palliative care in a timely manner. A systematic approach in primary care can facilitate earlier identification of patients with potential palliative care needs and prompt further assessment. AIM: To identify existing screening tools for identification of patients with advanced progressive diseases who are likely to have palliative care needs in primary healthcare and evaluate their accuracy. DESIGN: Systematic review (PROSPERO registration number CRD42019111568). DATA SOURCES: Cochrane, MEDLINE, Embase and CINAHL were searched from inception to March 2019. RESULTS: From 4,127 unique articles screened, 25 reported the use or development of 10 screening tools. Most tools use prediction of death and/or deterioration as a proxy for the identification of people with potential palliative care needs. The tools are based on a wide range of general and disease-specific indicators. The accuracy of five tools was assessed in eight studies; these tools differed significantly in their ability to identify patients with potential palliative care needs with sensitivity ranging from 3% to 94% and specificity ranging from 26% to 99%. CONCLUSION: The ability of current screening tools to identify patients with advanced progressive diseases who are likely to have palliative care needs in primary care is limited. Further research is needed to identify standardised screening processes that are based not only on predicting mortality and deterioration but also on anticipating the palliative care needs and predicting the rate and course of functional decline. This would prompt a comprehensive assessment to identify and meet their needs on time.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Atenção à Saúde , Humanos , Atenção Primária à Saúde
12.
Pain Pract ; 19(1): 93-117, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29772118

RESUMO

CONTEXT: Pain is one of the most devastating symptoms for cancer patients. One third of patients who experience pain do not receive effective treatment. A key barrier to effective pain management is lack of routine measurement and monitoring of pain. Patient-reported outcome measures (PROMs) are recommended for measuring cancer pain. However, evidence to guide the selection of the most appropriate measure to identify and monitor cancer pain is limited. A systematic review of measurement properties of PROMs for pain in cancer patients is needed to identify the best validated measure for adoption to an electronic platform. OBJECTIVES: To systematically review measurement properties of PROMs used for adult cancer patients to measure pain and, as a secondary goal, to investigate the evidence of validated mobile health (mHealth) applications used to measure pain (registration number: CRD42017065575). METHODS: Medline, Embase, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) were systematically searched in March 2018 for studies examining measurement properties for PROMs for pain in adult cancer patients. The methodological quality of the studies and their results were appraised using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) checklist and specific measurement properties criteria, respectively. RESULTS: Sixteen studies evaluating 8 instruments were included. No studies using a PROM in an mHealth application were identified. The methodological quality of the measurement properties ranged between poor and fair. No instrument showed strong positive evidence for all the evaluated measurement properties. Based on the available evidence, the Brief Pain Inventory-Short Form (BPI-SF) had the strongest evidence to support its selection for the measurement of cancer pain. CONCLUSION: The BPI-SF was the best performing measure across all properties evaluated through COSMIN. Better quality validation studies of PROMs for cancer pain are needed to explore the full range of measurement properties. Utilizing mHealth applications to measure pain in cancer patients is an innovative approach worthy of further investigation.


Assuntos
Dor do Câncer/diagnóstico , Medição da Dor/métodos , Medidas de Resultados Relatados pelo Paciente , Adulto , Humanos , Aplicativos Móveis , Telemedicina/métodos
13.
Age Ageing ; 47(6): 833-840, 2018 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-29982340

RESUMO

Background: making informed decisions about cancer care provision for older cancer patients can be challenging and complex. Evidence suggests cancer care varies by age, however the relationship between age and care experiences from diagnosis to death for cancer patients within the UK has not previously been examined in detail. Patients and methods: retrospective cohort linking cancer registry and secondary care data for 13,499 adult cancer patients who died between January 2005 and December 2011. Cancer therapies (chemotherapy, radiotherapy, surgery), hospital palliative care referrals, hospital admissions and place of death were compared between age groups using multivariable regression models. Trends in cancer care over time, overall and within age groups were also assessed. Results: compared with adult patients under 60 years, patients aged 80 years and over were less likely to receive chemotherapy, radiotherapy, a hospital palliative care referral; or be admitted to hospital but were more likely to die in a care home. Overall, the percentage of patients receiving chemotherapy, surgery, hospital palliative care referrals and hospital admissions have increased while deaths in hospital have decreased. Deaths at home have increased for patients aged 80 years and over. Conclusion: older patients are less likely to receive cancer therapies or hospital palliative care before death. Further research is needed to identify the extent to which these results reflect unmet need.


Assuntos
Atenção à Saúde/tendências , Disparidades em Assistência à Saúde/tendências , Neoplasias/terapia , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Inglaterra/epidemiologia , Feminino , Necessidades e Demandas de Serviços de Saúde , Serviços de Assistência Domiciliar/tendências , Mortalidade Hospitalar/tendências , Hospitalização/tendências , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/diagnóstico , Neoplasias/mortalidade , Cuidados Paliativos/tendências , Sistema de Registros , Estudos Retrospectivos , Fatores de Risco , Assistência Terminal/tendências , Fatores de Tempo , Adulto Jovem
14.
Palliat Med ; 32(4): 767-774, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29130384

RESUMO

BACKGROUND: The role of non-medical prescribers working in palliative care has been expanding in recent years and prescribers report improvements in patient care, patient safety, better use of health professionals' skills and more flexible team working. Despite this, there is a lack of empirical evidence to demonstrate its clinical and economic impact, limiting our understanding of the future role of non-medical prescribers within a healthcare system serving an increasing number of people with palliative care needs. AIM: We developed a unique methodology to establish the level of non-medical prescribers' activity in palliative care across England and consider the likely overall contribution these prescribers are making at a national level in this context in relation to medical prescribing. SETTING/PARTICIPANTS: All prescriptions for 10 core palliative care drugs prescribed by general practitioners, nurses and pharmacists in England and dispensed in the community between April 2011 and April 2015 were extracted from the Prescribing Analysis Cost Tool system. DESIGN: The data were broken down by prescriber and basic descriptive analysis of prescription frequencies by opioid, non-opioids and total prescriptions by year were undertaken. To evaluate the yearly growth of non-medical prescribers, the total number of prescriptions was compared by year for each prescribing group. RESULTS: Non-medical prescribers issued prescriptions rose by 28% per year compared to 9% in those issued by medical prescribers. Despite this, the annual growth in non-medical prescribers prescriptions was less than 1% a year in relation to total community palliative care prescribing activity in England. Impact on medical prescribing is therefore minimal.


Assuntos
Analgésicos Opioides/administração & dosagem , Cuidados Paliativos , Padrões de Prática Médica/tendências , Inglaterra , Humanos , Segurança do Paciente
15.
Palliat Med ; 32(8): 1322-1333, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29874525

RESUMO

BACKGROUND: Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. AIM: To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. DESIGN: This is a retrospective cohort study. SETTING/PARTICIPANTS: A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. RESULTS: Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) ( p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50-74 years (59 days), and 75 years and over (39 days) ( p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis ( p < 0.001). CONCLUSION: Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.


Assuntos
Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Tempo para o Tratamento/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Tempo , Reino Unido , Adulto Jovem
16.
BMC Fam Pract ; 19(1): 177, 2018 11 20.
Artigo em Inglês | MEDLINE | ID: mdl-30458718

RESUMO

BACKGROUND: Primary health care teams are key to the delivery of care for patients with advanced cancer during the last year of life. The Gold Standards Framework is proposed as a mechanism for coordinating and guiding identification, assessment, and support. There are still considerable variations in practice despite its introduction. The aim of this qualitative study is to improve understanding of variations in practice through exploring the perspectives and experiences of members of primary health care teams involved in the care of patients with advanced cancer. METHODS: Qualitative, semi-structured interviews, focus groups, and non-participatory observations involving 67 members of primary health care teams providing palliative care. Data were analysed using a grounded theory approach. RESULTS: We identified distinct differences in the drivers and barriers of community advanced cancer care coordination, which relate to identification and management, and access to effective pain management, and go some way to understanding variations in practice. These include proactive identification processes, time and resource pressures, unclear roles and responsibilities, poor multidisciplinary working, and inflexible models for referral and prescribing. These provide valuable insight into how professionals work together and independently within an infrastructure that can both support and hinder the provision of effective community palliative care. CONCLUSIONS: Whilst the GSF is a guide for good practice, alone it is not a mechanism for change. Rather it provides a framework for describing quality of practice that was already occurring. Consequently, there will continue to be variations in practice.


Assuntos
Atenção à Saúde/métodos , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Pesquisa Qualitativa , Humanos , Morbidade/tendências , Neoplasias/epidemiologia , Reino Unido/epidemiologia
18.
Acta Oncol ; 55(9-10): 1220-1226, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27551774

RESUMO

BACKGROUND: Standardized reporting of treatment-related adverse events (AE) is essential in clinical trials, usually achieved by using the National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) reported by clinicians. Patient-reported adverse events (PRAE) may add value to clinician assessments, providing patient perspective on subjective toxicity. We developed an online patient symptom report and self-management system for real-time reporting and managing AE during cancer treatment integrated with electronic patient records (eRAPID). As part of this program we developed a patient version of the CTCAE (version 4.0), rephrasing terminology into a self-report format. We explored patient understanding of these items via cognitive interviews. MATERIAL AND METHOD: Sixty patients (33 female, 27 male) undergoing treatment were purposively sampled by age, gender and tumor group (median age 61.5, range 35-84, 12 breast, 12 gynecological, 13 colorectal, 12 lung and 11 renal). Twenty-one PRAE items were completed on a touch-screen computer. Subsequent audio-recorded cognitive interviews and thematic analysis explored patients' comprehension of items via verbal probing techniques during three interview rounds (n = 20 patients/round). RESULTS: In total 33 item amendments were made; 29% related to question comprehension, 68% response option and 3% order effects. These amendments to phrasing and language improved patient understanding but maintained CTCAE grading and key medical information. Changes were endorsed by members of a patient advisory group (N = 11). CONCLUSION: Item adaptations resulted in a bank of consistently interpreted self-report AE items for use in future research program. In-depth analysis of items through cognitive interviews is an important step towards developing an internationally valid system for PRAE, thus improving patient safety and experiences during cancer treatment.


Assuntos
Antineoplásicos/uso terapêutico , Uso Significativo , Neoplasias/tratamento farmacológico , Sistemas On-Line , Questionário de Saúde do Paciente , Autorrelato , Adulto , Idoso , Idoso de 80 Anos ou mais , Compreensão , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Registros Eletrônicos de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Autogestão , Terminologia como Assunto
19.
Support Care Cancer ; 24(12): 5041-5048, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27540738

RESUMO

OBJECTIVES: In 2010, St. James Institute of Oncology (Leeds, UK) created a new acute oncology service (AOS) consisting of a new admissions unit with a nurse-led telephone triage (TT) system. This audit cycle (March 2011 and June 2013) evaluated patient experiences of the reconfigured AOS and staff use of the TT system. METHODS: Patient views were elicited via a questionnaire and semi-structured interviews. The TT forms were analysed descriptively evaluating completion and data quality, reported symptoms and their severity and advice given (including admission rates). RESULTS: Patients (n = 40) reported high satisfaction with the new AOS. However, 56 % of patients delayed 2 days or more before contacting the unit. In 2011, 26 % of all the admitted patients were triaged via the TT system; 133 TT forms were completed. In June 2013, 49 % of the admitted patients were triaged; 264 forms were completed. The most commonly reported symptoms on the TT forms were pain, pyrexia/rigors/infection, diarrhoea, vomiting and dyspnoea. Half of the patients using the TT system were admitted (52 % in 2011, 49 % in 2013). CONCLUSIONS: Our audit provided evidence of successful implementation of the TT system with the number of TT forms doubling from 2011 to 2013. The new AOS was endorsed by patients, with the majority satisfied with the care they received.


Assuntos
Auditoria Clínica/métodos , Testes Diagnósticos de Rotina/métodos , Adulto , Idoso , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros , Inquéritos e Questionários , Telefone , Triagem , Adulto Jovem
20.
Palliat Med ; : 2692163211038698, 2021 Aug 31.
Artigo em Inglês | MEDLINE | ID: mdl-34465224
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