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1.
Palliat Med ; 38(5): 593-601, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38767240

RESUMO

BACKGROUND: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored. AIM: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings. DESIGN: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis. SETTING/PARTICIPANTS: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021. RESULTS: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die. CONCLUSIONS: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.


Assuntos
Equipe de Assistência ao Paciente , Humanos , Prognóstico , Feminino , Masculino , Reino Unido , Fatores de Tempo , Comunicação Interdisciplinar , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Pessoa de Meia-Idade , Hospitais para Doentes Terminais , Comunicação , Adulto
2.
Health Commun ; : 1-9, 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39099415

RESUMO

Prognostication has been found to be a delicate matter in interactions between palliative care professionals and patients. Studies have investigated how these discussions are managed and how speakers orient to their delicate nature. However, the degree to which prognostication is a delicate matter in discussions between palliative care professionals themselves has yet to be investigated. This study explored how hospice multidisciplinary team (MDT) members oriented to the delicacy of prognostication during their meetings. Video-recordings of 24 hospice MDT meetings were transcribed and analyzed using Conversation Analysis. In-depth analysis of the interactions showed how prognostic discussions were oriented to as delicate. This was displayed through markers such as pauses and self-repair organization including cutting off words and restarts, and through accounts accompanying the prognosis. In this way, it was seen that prognostication was not necessarily straightforward. This was further evidenced when prognostic requests were problematic to respond to. It is noteworthy that prognostic discussions are delicate during hospice MDT meetings. Potential reasons may reach further than the taboo of death and lie within prognostic uncertainty and accountability. Research is warranted to explore what causes this delicacy and whether specific support is needed for hospice staff.

3.
Curr Treat Options Oncol ; 24(2): 93-107, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36656503

RESUMO

OPINION STATEMENT: Fatigue is a common and distressing symptom experienced by patients with cancer. It is most common in patients with locally advanced or metastatic incurable disease. It can have profound effects on quality-of-life and physical functioning. In addition to general supportive measures (directed at tackling contributory conditions and comorbidities), a variety of specific interventions have been developed which can be broadly categorised as physical therapies, psychological therapies or medication. There is some evidence that each of these approaches can have benefits in patients with earlier stage disease, those undergoing active treatment and in cancer survivors. The best evidence is for aerobic exercise, yoga, cognitive-behavioural therapy (CBT) and psycho-educational interventions. Less strong evidence supports the use of medications such as methylphenidate or ginseng. In patients with advanced disease, it is likely that the mechanisms of fatigue or the factors contributing to fatigue maintenance may be different. Relatively fewer studies have been undertaken in this group and the evidence is correspondingly weaker. The authors recommend the cautious use of aerobic exercise (e.g. walking) in those who are still mobile. The authors advise considering the use of psycho-educational approaches or CBT in those patients who are able to engage in such forms of therapy. In patients near the end-of-life, the authors advise use of dexamethasone (short-term use) and other pharmacological treatments only on the basis of a clinical trial.


Assuntos
Segunda Neoplasia Primária , Neoplasias , Humanos , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/terapia , Qualidade de Vida , Exercício Físico , Terapia por Exercício/efeitos adversos , Neoplasias/complicações , Neoplasias/terapia , Segunda Neoplasia Primária/etiologia
4.
Palliat Med ; 37(9): 1345-1364, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37586031

RESUMO

BACKGROUND: Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important. AIM: To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcome set for prognostic impact studies. DESIGN: A systematic review was conducted and analysed in two subsets: one qualitative and one quantitative. (PROSPERO ID: CRD42022320117; 29/03/2022). DATA SOURCES: Six databases were searched from inception to September 2022. We extracted data describing (1) outcomes used to measure the impact of prognostication and (2) patients' and informal caregivers' experiences and perceptions of prognostication in advanced cancer. We classified findings using the Core Outcome Measures in Effectiveness Trials (COMET) initiative taxonomy, along with a narrative description. We appraised retrieved studies for quality, but quality was not a basis for exclusion. RESULTS: We identified 42 eligible studies: 32 quantitative, 6 qualitative, 4 mixed methods. We extracted 70 outcomes of prognostication in advanced cancer and organised them into 12 domains: (1) survival; (2) psychiatric outcomes; (3) general outcomes; (4) spiritual/religious/existential functioning/wellbeing, (5) emotional functioning/wellbeing; (6) cognitive functioning; (7) social functioning; (8) global quality of life; (9) delivery of care; (10) perceived health status; (11) personal circumstances; and (12) hospital/hospice use. CONCLUSION: Outcome reporting and measurement varied markedly across the studies. A standardised approach to outcome reporting in studies of prognosis is necessary to enhance data synthesis, improve clinical practice and better align with stakeholders' priorities.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Cuidadores/psicologia , Avaliação de Resultados em Cuidados de Saúde , Consenso , Neoplasias/psicologia
5.
Palliat Med ; 36(7): 1047-1058, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35635018

RESUMO

BACKGROUND: The efficacy of virtual reality for people living with a terminal illness is unclear. AIM: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. DESIGN: Systematic review and meta-analysis. PROSPERO (CRD42021240395). DATA SOURCES: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included 'virtual reality' and 'palliative care'. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges's g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. RESULTS: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. CONCLUSIONS: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adolescente , Humanos , Tecnologia
6.
Palliat Med ; 36(9): 1320-1335, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-36071641

RESUMO

BACKGROUND: Complementary therapies are widely used in palliative care settings. Qualitative research found that people with advanced disease report a range of physical and psychological benefits from complementary therapies, however evidence of their effectiveness from clinical trials is inconclusive. This may be because trials are limited by use of inappropriate outcome measures. AIMS: To identify tools which capture the impact of massage, reflexology and aromatherapy in people with advanced disease. We (1) identified multi-domain tools used to evaluate these therapies in populations with any chronic health condition and (2) assessed whether tools were valid and psychometrically robust in populations with advanced disease. DESIGN: A two-stage systematic review was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (PROSPERO: CRD42020161199). DATA SOURCES: Six databases were searched (August 2021). Study methodological quality, tool psychometric properties and evidence quality were assessed. A global comparison score was generated. RESULTS: Stage 1: 66 trials using 40 different multi-domain tools were identified. Stage 2: Of these tools, we identified papers for seven tools regarding development or validation in advanced disease populations. The majority of psychometric data were inconsistent or inconclusive. Data were mostly of low quality due to methodological issues. CONCLUSION: Of the tools identified, 'Functional Assessment of Cancer Therapy - General' appears to be the most suitable alternative tool against COMSIN criteria, for trials of massage, reflexology and aromatherapy in palliative care. Further tool validation is required before firm recommendations can be made. Co-development of a core outcome set could ensure relevant domains are assessed.


Assuntos
Aromaterapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidados Paliativos , Psicometria , Massagem
7.
Palliat Med ; 36(1): 142-151, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34596445

RESUMO

BACKGROUND: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. AIM: To determine the consistency with which the Surprise Question is used. DESIGN: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. SETTING/PARTICIPANTS: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. RESULTS: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). CONCLUSIONS: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Estudos Transversais , Humanos , Atenção Primária à Saúde , Prognóstico
8.
Cochrane Database Syst Rev ; 9: CD006332, 2022 09 15.
Artigo em Inglês | MEDLINE | ID: mdl-36106667

RESUMO

BACKGROUND: Opioid-induced bowel dysfunction (OIBD) is characterised by constipation, incomplete evacuation, bloating, and gastric reflux. It is one of the major adverse events (AEs) of treatment for pain in cancer and palliative care, resulting in increased morbidity and reduced quality of life. This review is a partial update of a 2008 review, and critiques as previous update (2018) trials only for people with cancer and people receiving palliative care. OBJECTIVES: To assess for OIBD in people with cancer and people receiving palliative care the effectiveness and safety of mu-opioid antagonists (MOAs) versus different doses of MOAs, alternative pharmacological/non-pharmacological interventions, placebo, or no treatment. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, and Web of Science (December 2021), clinical trial registries and regulatory websites. We sought contact with MOA manufacturers for further data. SELECTION CRITERIA: Randomised controlled trials (RCTs) assessing the effectiveness and safety of MOAs for OIBD in people with cancer and people at a palliative stage irrespective of the type of terminal disease. DATA COLLECTION AND ANALYSIS: Two review authors assessed risk of bias and extracted data. The appropriateness of combining data from the trials depended upon sufficient homogeneity across trials. Our primary outcomes were laxation response, effect on analgesia, and AEs. We assessed the certainty of evidence using GRADE and created summary of findings tables. MAIN RESULTS: We included 10 studies (two new trials) randomising in-total 1343 adults with cancer irrespective of stage, or at palliative care stage of any disease. The MOAs were oral naldemedine and naloxone (alone or in combination with oxycodone), and subcutaneous methylnaltrexone. The trials compared MOAs with placebo, MOAs at different doses, or in combination with other drugs. Two trials of naldemedine and three of naloxone with oxycodone were in people with cancer irrespective of disease stage. The trial on naloxone alone was in people with advanced cancer. Four trials on methylnaltrexone were in palliative care where most participants had advanced cancer. All trials were vulnerable to biases; most commonly, blinding of the outcome assessor was not reported.  Oral naldemedine versus placebo Risk (i.e. chance) of spontaneous laxations in the medium term (over two weeks) for naldemedine was over threefold greater risk ratio (RR) 2.00, 95% confidence interval (CI) 1.59 to 2.52, 2 trials, 418 participants, I² = 0%. Number needed to treat for an additional beneficial outcome (NNTB) 3, 95% CI 3 to 4; moderate-certainty evidence). Earlier risk of spontaneous laxations and patient assessment of bowel change was not reported. Very low-certainty evidence showed naldemedine had little to no effect on opioid withdrawal symptoms. There was little to no difference in the risk of serious (non-fatal) AEs (RR 3.34, 95% CI 0.85 to 13.15: low-certainty evidence). Over double the risk of AEs (non-serious) reported with naldemedine (moderate-certainty evidence). Low-dose oral naldemedine versus higher dose Risk of spontaneous laxations was lower for the lower dose (medium term, 0.1 mg versus 0.4 mg: RR 0.69, 95% CI 0.53 to 0.89, 1 trial, 111 participants (low-certainty evidence)). Earlier risk of spontaneous laxations and patient assessment of bowel change not reported. Low-certainty evidence showed little to no difference on opioid withdrawal symptoms (0.1 mg versus 0.4 mg mean difference (MD) -0.30, 95% CI -0.85 to 0.25), and occurrences of serious AEs (0.1 mg versus 0.4 mg RR 0.25, 95% CI 0.03 to 2.17). Low-certainty evidence showed little to no difference on non-serious AEs. Oral naloxone versus placebo Risk of spontaneous laxations and AEs not reported. Little to no difference in pain intensity (very low-certainty evidence). Full data not given. The trial reported that no serious AEs occurred. Oral naloxone + oxycodone versus oxycodone Risk of spontaneous laxations within 24 hours and in the medium term not reported. Low-certainty evidence showed naloxone with oxycodone reduced the risk of opioid withdrawal symptoms. There was little to no difference in the risk of serious (non-fatal) AEs (RR 0.68, 95% CI 0.44 to 1.06), 3 trials, 362 participants, I² = 55%: very low-certainty evidence). There was little to no difference in risk of AEs (low-certainty evidence).  Subcutaneous methylnaltrexone versus placebo Risk of spontaneous laxations within 24 hours with methylnaltrexone was fourfold greater than placebo (RR 2.97, 95% CI 2.13 to 4.13. 2 trials, 287 participants, I² = 31%. NNTB 3, 95% CI 2 to 3; low-certainty evidence). Risk of spontaneous laxations in the medium term was over tenfold greater with methylnaltrexone (RR 8.15, 95% CI 4.76 to 13.95, 2 trials, 305 participants, I² = 47%. NNTB 2, 95% CI 2 to 2; moderate-certainty evidence). Low-certainty evidence showed methylnaltrexone reduced the risk of opioid withdrawal symptoms, and did not increase risk of a serious AE (RR 0.59, 95% CI 0.38 to 0.93. I² = 0%; 2 trials, 364 participants). The risk of AEs was higher for methylnaltrexone (low-certainty evidence). Lower-dose subcutaneous methylnaltrexone versus higher dose There was little to no difference in risk of spontaneous laxations in the medium-term (1 mg versus 5 mg or greater: RR 2.91, 95% CI 0.82 to 10.39; 1 trial, 26 participants very low-certainty evidence), or in patient assessment of improvement in bowel status (RR 0.98, 95% CI 0.71 to 1.35, 1 trial, 102 participants; low-certainty evidence). Medium-term assessment of spontaneous laxations and serious AEs not reported. There was little to no difference in symptoms of opioid withdrawal (MD -0.25, 95% CI -0.84 to 0.34, 1 trial, 102 participants) or occurrence of AEs (low-certainty evidence). AUTHORS' CONCLUSIONS: This update's findings for naldemedine and naloxone with oxycodone have been strengthened with two new trials, but conclusions have not changed. Moderate-certainty evidence for oral naldemedine on risk of spontaneous laxations and non-serious AEs suggests in people with cancer that naldemedine may improve bowel function over two weeks and increase the risk of AEs. There was low-certainty evidence on serious AEs. Moderate-certainty evidence for methylnaltrexone on spontaneous laxations over two weeks suggests subcutaneous methylnaltrexone may improve bowel function in people receiving palliative care, but certainty of evidence for AEs was low. More trials are needed, more evaluation of AEs, outcomes patients rate as important, and in children.


Assuntos
Neoplasias , Constipação Induzida por Opioides , Síndrome de Abstinência a Substâncias , Adulto , Analgésicos Opioides/efeitos adversos , Criança , Humanos , Naloxona , Naltrexona/análogos & derivados , Antagonistas de Entorpecentes/efeitos adversos , Neoplasias/tratamento farmacológico , Oxicodona , Cuidados Paliativos , Compostos de Amônio Quaternário
9.
BMC Palliat Care ; 21(1): 86, 2022 May 24.
Artigo em Inglês | MEDLINE | ID: mdl-35610644

RESUMO

BACKGROUND: Bispectral index (BIS) monitoring uses electroencephalographic data as an indicator of patients' consciousness level. This technology might be a useful adjunct to clinical observation when titrating sedative medications for palliative care patients. However, the use of BIS in palliative care generally, and in the UK in particular, is under-researched. A key area is this technology's acceptability for palliative care service users. Ahead of trialling BIS in practice, and in order to ascertain whether such a trial would be reasonable, we conducted a study to explore UK palliative care patients' and relatives' perceptions of the technology, including whether they thought its use in palliative care practice would be acceptable. METHODS: A qualitative exploration was undertaken. Participants were recruited through a UK hospice. Focus groups and semi-structured interviews were conducted with separate groups of palliative care patients, relatives of current patients, and bereaved relatives. We explored their views on acceptability of using BIS with palliative care patients, and analysed their responses following the five key stages of the Framework method. RESULTS: We recruited 25 participants. There were ten current hospice patients in three focus groups, four relatives of current patients in one focus group and one individual interview, and eleven bereaved relatives in three focus groups and two individual interviews. Our study participants considered BIS acceptable for monitoring palliative care patients' consciousness levels, and that it might be of use in end-of-life care, provided that it was additional to (rather than a replacement of) usual care, and patients and/or family members were involved in decisions about its use. Participants also noted that BIS, while possibly obtrusive, is not invasive, with some seeing it as equivalent to wearable technological devices such as activity watches. CONCLUSIONS: Participants considered BIS technology might be of benefit to palliative care as a non-intrusive means of assisting clinical assessment and decision-making at the end of life, and concluded that it would therefore be acceptable to trial the technology with patients.


Assuntos
Atitude Frente a Saúde , Monitores de Consciência , Família , Cuidados Paliativos , Pacientes , Família/psicologia , Grupos Focais , Humanos , Cuidados Paliativos/métodos , Pacientes/psicologia , Pesquisa Qualitativa
10.
Plant Cell ; 30(12): 2959-2972, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30377238

RESUMO

Self-incompatibility (SI) in Petunia is regulated by a polymorphic S-locus. For each S-haplotype, the S-locus contains a pistil-specific S-RNase gene and multiple pollen-specific S-locus F-box (SLF) genes. Both gain-of-function and loss-of-function experiments have shown that S-RNase alone regulates pistil specificity in SI. Gain-of-function experiments on SLF genes suggest that the entire suite of encoded proteins constitute the pollen specificity determinant. However, clear-cut loss-of-function experiments must be performed to determine if SLF proteins are essential for SI of pollen. Here, we used CRISPR/Cas9 to generate two frame-shift indel alleles of S2 -SLF1 (SLF1 of S2 -haplotype) in S2S3 plants of P. inflata and examined the effect on the SI behavior of S2 pollen. In the absence of a functional S2-SLF1, S2 pollen was either rejected by or remained compatible with pistils carrying one of eight normally compatible S-haplotypes. All results are consistent with interaction relationships between the 17 SLF proteins of S2 -haplotype and these eight S-RNases that had been determined by gain-of-function experiments performed previously or in this work. Our loss-of-function results provide definitive evidence that SLF proteins are solely responsible for SI of pollen, and they reveal their diverse and complex interaction relationships with S-RNases to maintain SI while ensuring cross-compatibility.


Assuntos
Proteínas F-Box/metabolismo , Petunia/metabolismo , Petunia/fisiologia , Pólen/metabolismo , Pólen/fisiologia , Autoincompatibilidade em Angiospermas/fisiologia , Proteínas F-Box/genética , Regulação da Expressão Gênica de Plantas/genética , Regulação da Expressão Gênica de Plantas/fisiologia , Petunia/genética , Proteínas de Plantas/genética , Proteínas de Plantas/metabolismo , Proteínas de Plantas/fisiologia , Pólen/genética , Ribonucleases/genética , Ribonucleases/metabolismo , Autoincompatibilidade em Angiospermas/genética
11.
Int J Geriatr Psychiatry ; 36(9): 1354-1361, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33719098

RESUMO

OBJECTIVES: To (1) describe the prescription and administration of regular and 'as required' (pro re nata [PRN]) analgesics in English care homes, (2) investigate individual and care home factors associated with analgesic use. METHODS: We collected data (2014-2016) at 0-, 4-, and 12-months nested in a longitudinal cohort study of 86 English care homes about residents with diagnosed or probable dementia. We describe analgesics prescribed as regular or PRN medication, by class, and PRN administration. We explored individual differences (sociodemographic; dementia severity [Clinical Dementia Rating]), and care home differences (type; ownership; number of beds; dementia-registered/specialist; Care Quality Commission rating) in prescription and administration using multilevel regression models. RESULTS: Data were available for 1483 residents. At baseline, 967 residents (67.9%) were prescribed analgesics: 426 residents (28.7%) prescribed regular analgesics and 670 (45.2%) prescribed PRN. Paracetamol was the most prescribed analgesic (56.7%), with PRN prescriptions more common than regular (39.7% vs. 16.6%). Across all study visits, 344 residents (mean = 41.9%) with a PRN prescription did not receive any analgesic in the 2 weeks prior to data collection. Male residents and those with severe dementia received fewer analgesics. Care homes differences in PRN administration were not explained by the modelled variables. CONCLUSIONS: Pain management in English care homes largely relies on PRN paracetamol that is frequently prescribed but infrequently administered. Care homes differ in how often they administer PRN analgesics. Some care home residents particularly those with more severe dementia are likely to have untreated pain.


Assuntos
Analgésicos , Demência , Analgésicos/uso terapêutico , Demência/tratamento farmacológico , Prescrições de Medicamentos , Humanos , Estudos Longitudinais , Masculino , Dor/tratamento farmacológico
12.
Dig Dis Sci ; 66(12): 4072-4089, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33433811

RESUMO

People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.


Assuntos
Planejamento Antecipado de Cuidados , Falência Renal Crônica/terapia , Transplante de Fígado , Cuidados Paliativos , Listas de Espera , Humanos , Falência Renal Crônica/diagnóstico , Falência Renal Crônica/fisiopatologia , Falência Renal Crônica/psicologia , Padrões de Prática Médica
13.
Palliat Med ; 35(6): 1202-1214, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33775172

RESUMO

BACKGROUND: People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff. AIM: To evaluate a model embedding palliative specialists, trained as 'homelessness champions', into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care. DESIGN: An exploratory qualitative design. SETTING/PARTICIPANTS: Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers). RESULTS: Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care. CONCLUSION: This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations.


Assuntos
COVID-19 , Pessoas Mal Alojadas , Humanos , Londres , Cuidados Paliativos , SARS-CoV-2
14.
BMC Palliat Care ; 20(1): 31, 2021 Feb 10.
Artigo em Inglês | MEDLINE | ID: mdl-33568127

RESUMO

BACKGROUND: Providing psychological support to people living with terminal illness is a fundamental part of hospice care. Recent research on delivery of psychological services in hospices in the United Kingdom (UK) on a national level, including inequalities or variation in practice, is limited. A nationwide survey will highlight any differences in provision and in doing so help focus future research and inform best practice both within the UK, and internationally. The specific objectives of this survey are to (1) chart the types of psychological support available to adult patients in hospices in the UK in line with the National Institute for Health and Care Excellence model; (2) explore how services are organised; and (3) gather service perspectives on adequacy of care, and facilitators and barriers to appropriate practice. METHODS: A cross-sectional online survey emailed to adult hospices in the UK in November-December 2019. One staff member involved in the delivery and/or organisation of psychological support was invited to participate per hospice. Of 193 invited hospices, 116 took part. RESULTS: Sixteen percent rated their hospice psychological service as wholly adequate. The majority reported that services can access specialist professionals, but many relied on external referrals. Barriers to best practice included funding and staff capacity; facilitators included clear referral structures, audit and appropriate needs and outcome assessments. CONCLUSIONS: Access to psychological professionals has improved since the last survey 15 years ago, but the majority of responders felt their overall service was not wholly adequate. Basic emotional support is largely felt to be sufficient, but our results indicate a need for improvements in access to more specialist care. Partnerships with external mental health services may be key. Our findings highlight core facilitators and barriers to providing good psychological care at the end of life that should be considered by services both within the UK and on an international level.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Adulto , Estudos Transversais , Humanos , Cuidados Paliativos , Inquéritos e Questionários , Reino Unido
15.
J Vasc Surg ; 72(1): 259-267, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31980242

RESUMO

OBJECTIVE: The aim of our prospective, single-center, randomized study was to compare the procedural outcomes and complication rates of ultrasound (US)-guided common femoral artery (CFA) access to fluoroscopic guidance in noncardiac procedures. METHODS: A total of 635 patients undergoing femoral access for noncardiac diagnostic or interventional procedures were randomized 1:1 to receive either fluoroscopic or US-guided access. The primary end point of the study was successful CFA cannulation. Secondary end points included the first-pass success rate, time to sheath insertion, and accidental venipunctures rate. Both short (24 hours) and midterm (30-90 days postprocedure) access complications were assessed by practitioners blinded to patient randomization. RESULTS: Successful CFA cannulation occurred in 93% of US-guided procedures compared with 86% of fluoroscopy-guided access (P = .002). US guidance was associated with increased rates of first-attempt success (74% vs 42%; P < .001), fewer inadvertent venipunctures (2% vs 10 %; P < .001), and decreased median time to cannulation (80 vs 100 seconds; P < .001) compared with fluoroscopy. Rates of complications did not differ at 24 hours (1% vs 1%; P = .99) or 30 to 90 days (2% vs 4%; P = .15) in fluoroscopy vs US-guided access. When access was performed by vascular surgery trainees (residents and fellows), US guidance retained superior rates of successful CFA cannulation compared to fluoroscopy guided access (n = 298; 96% vs 89%; P = .03). Trainees' time to achieve CFA cannulation was similar to attendings' when using US guidance (median, 85 vs 77 seconds; P = .14); however, with fluoroscopy, trainees' times were significantly longer than those of attendings (137 vs 86 seconds; P = .001). CONCLUSIONS: In comparison to fluoroscopy, US-guided CFA cannulation had a higher rate of success, faster cannulation, and fewer venipunctures in the absence of increased complications.


Assuntos
Cateterismo Periférico , Artéria Femoral/diagnóstico por imagem , Radiografia Intervencionista , Ultrassonografia de Intervenção , Doenças Vasculares/diagnóstico por imagem , Doenças Vasculares/terapia , Idoso , Cateterismo Periférico/efeitos adversos , Competência Clínica , Feminino , Fluoroscopia , Humanos , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Estudos Prospectivos , Punções , Radiografia Intervencionista/efeitos adversos , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento , Ultrassonografia de Intervenção/efeitos adversos , West Virginia
16.
J Clin Gastroenterol ; 54(10): 898-904, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32301836

RESUMO

BACKGROUND AND AIMS: Liver health professionals have difficulty discussing liver cirrhosis and its prognosis with patients and families. Question Prompt Lists (QPLs), which are evidence-based lists of "recommended questions," may improve communication but need to be designed specifically for the target population. This study aimed to develop and pilot a QPL for patients with cirrhosis. METHODS: A mixed-methods design in 3 phases. In phase 1 (item generation), potential questions for inclusion in the QPL were identified from 3 sources-a scoping literature review; an online survey; and interviews with patients, family members, and health professionals. In phase 2 (QPL construction), a multidisciplinary expert panel finalized the selection of questions and the format of the QPL. In phase 3 (pilot study), the QPL was assessed for acceptability and feasibility in a hepatology outpatient clinic population. RESULTS: From 258 topics initially identified, 30 questions were included in the first draft of the QPL. After review by a multidisciplinary expert panel including patients, the QPL was reduced to 22 questions. In the pilot study, 133/215 eligible patients consented to participate, although only 67/133 used the QPL in their clinic appointment. Among those who used the QPL, all questions were asked at least once. The most commonly asked question related to life expectancy. Most participants expressed support for the content of the QPL. CONCLUSIONS: A QPL, suitable for use in patients with liver cirrhosis attending hepatology outpatient clinics, has been developed and piloted. The QPL seems to be feasible to use and acceptable to patients and clinicians. Further work is needed to evaluate its effectiveness and to determine optimum delivery in clinical practice.


Assuntos
Pacientes Ambulatoriais , Relações Médico-Paciente , Comunicação , Humanos , Cirrose Hepática/terapia , Participação do Paciente , Projetos Piloto , Encaminhamento e Consulta , Inquéritos e Questionários
17.
Curr Treat Options Oncol ; 21(1): 5, 2020 01 16.
Artigo em Inglês | MEDLINE | ID: mdl-31950387

RESUMO

OPINION STATEMENT: Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by formulating and sensitively communicating information about prognosis. Current evidence suggests that clinician predictions are correlated with actual survival but tend to be overestimations. In an attempt to cultivate prognostic skills, it is recommended that clinicians practice formulating and recording subjective estimates of prognosis in advanced cancer patient's medical notes. When possible, a multi-professional prognostic estimate should be sought as these may be more accurate than individual predictions alone. Clinicians may consider auditing the accuracy of their predictions periodically and using feedback from this process to improve their prognostic skills.Clinicians may also consider using validated prognostic tools to complement their clinical judgements. However, there is currently only limited evidence about the comparative accuracy of different prognostic tools or the extent to which these measures are superior to clinical judgement. Oncologists and palliative care physicians should ensure that they receive adequate training in advanced communication skills, which builds upon their pre-existing skills, to sensitively deliver information on prognosis. In particular, clinicians should acknowledge their own prognostic uncertainty and should emphasise the supportive care that can continue to be provided after stopping cancer-directed therapies.


Assuntos
Neoplasias/mortalidade , Neoplasias/patologia , Adulto , Competência Clínica , Tomada de Decisão Clínica , Comunicação , Gerenciamento Clínico , Humanos , Gradação de Tumores , Estadiamento de Neoplasias , Neoplasias/etiologia , Neoplasias/terapia , Oncologistas , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Relações Médico-Paciente , Prognóstico
18.
Palliat Med ; 34(7): 896-905, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32233831

RESUMO

BACKGROUND: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging. AIM: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations. DESIGN: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients. SETTING/PARTICIPANTS: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis. RESULTS: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as 'days', allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as 'dying' were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with 'permission' to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient's function previously discussed with the family. CONCLUSION: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.


Assuntos
Família , Assistência Terminal , Comunicação , Morte , Humanos , Prognóstico , Incerteza
19.
Palliat Med ; 34(10): 1332-1339, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32667259

RESUMO

BACKGROUND: Interventions delivered in palliative care are complex and their evaluation through qualitative and quantitative research can lead to contrasting results. In a systematic review of trials, the effectiveness results of complementary therapies in palliative care were inconclusive; however, our qualitative synthesis showed participants perceived them to be beneficial. AIM: Use a novel methodology to synthesise evidence from qualitative and quantitative systematic reviews on complementary therapy in palliative care to explore the following: (1) If interventions delivered in trials reflect how participants in qualitative studies report they are delivered in real-life settings and (2) whether quality of life measures used in trials capture perceived benefits that are reported in qualitative studies. METHODS: Two matrix tables were formulated. In one, key components in delivery of the complementary therapy from the qualitative synthesis which are as follows: (1) relationship with therapist, (2) comfortable environment, (3) choices (e.g. area of massage) and (4) frequent sessions, were plotted against intervention description, to explore matches and mismatches. In the other, items included in quality of life scales were compared with perceived benefits of complementary therapy. RESULTS: None of the trials included all four key delivery components. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. CONCLUSIONS: By integrating qualitative and quantitative review data, we determined the reasons trials may be inconclusive. This methodological exemplar provides a framework for understanding complexity in outcomes across trials and a direction for future research.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Massagem , Pesquisa Qualitativa , Qualidade de Vida
20.
Palliat Med ; 34(2): 179-194, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31659939

RESUMO

BACKGROUND: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures. AIM: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs. DESIGN: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life. DATA SOURCES: Eight citation databases and three trial registries were searched to June 2018. RESULTS: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain. CONCLUSIONS: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care.


Assuntos
Aromaterapia/métodos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Massagem/métodos , Terapias Mente-Corpo/métodos , Manipulações Musculoesqueléticas/métodos , Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
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