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1.
Palliat Med ; 38(2): 184-199, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38268061

RESUMO

BACKGROUND: Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this. AIM: To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group. DESIGN: The scoping review follows the method of Arksey and O'Malley. RESULTS: Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures. CONCLUSION: Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care.


Assuntos
Fragilidade , Humanos , Idoso , Morte , Assistência Centrada no Paciente , Pacientes , Medidas de Resultados Relatados pelo Paciente
2.
Artigo em Inglês | MEDLINE | ID: mdl-37852662

RESUMO

OBJECTIVES: Our work aims to critically review the use of anticipatory medicines in our inner-city hospice community population and whether our current practices are fit for purpose. METHODS: Retrospective audit of community palliative care patients at the end-of-life prescribed anticipatory medicines within a 3-month period. Anticipatory charts and case notes reviewed. Intervention included updating local guidelines, local teaching for medical and non-medical prescribers and sharing results nationally. Eighteen months later, reaudit was performed assessing impact. RESULTS: In total, 76 patients included. 75/76 (99%) were prescribed an analgesic, antiemetic, antisecretory and anxiolytic. 49/76 (64%) were administered 'as required' medications at home. Haloperidol was the favoured antiemetic (88%), costing our hospice ~£2000/month. Case note review highlighted prescribing and administration issues. Reaudit showed a reduction in prescriptions of antisecretory (by 57%) and antiemetic (by 50%), with a wider range of antiemetics (levomepromazine 47%, haloperidol 35%, cyclizine 14%, metoclopramide 3%) indicating individualised prescribing. Those without an antiemetic prescribed did not later require one dispensing. CONCLUSION: Our work challenges the orthodoxy that an analgesic, antiemetic, antisecretory and anxiolytic medication must always be included for effective anticipatory prescribing. Antiemetics may not be universally required and individualised prescribing was cost-effective and safe at a local level. Further work evaluating the impacts of altered practice on patients, caregivers, professionals and in other community settings is required.

3.
Healthcare (Basel) ; 11(16)2023 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-37628428

RESUMO

BACKGROUND: With the removal of many barriers to direct-to-consumer telehealth during the COVID-19 pandemic, which resulted in a historic surge in the adoption of telehealth into ongoing practice, health systems must now identify the most efficient and effective way to sustain these visits. The Medical University of South Carolina Center for Telehealth developed a Telehealth Centralized Support team as part of a strategy to mature the support infrastructure for the continued large-scale use of outpatient virtual care. The team was deployed as the Center for Telehealth rolled out a new ambulatory telehealth software platform to monitor clinical activity, support patient registration and virtual rooming, and ensure successful visit completion. METHODS: A multi-method, program-evaluation approach was used to describe the development and composition of the Telehealth Centralized Support Team in its first 18 months utilizing the Reach, Effectiveness, Adoption, Implementation, Maintenance framework. RESULTS: In the first 18 months of the Telehealth Centralized Support team, over 75,000 visits were scheduled, with over 1500 providers serving over 46,000 unique patients. The team was successfully deployed over a large part of the clinical enterprise and has been well received across the health system. It has proven to be a scalable model to support enterprise-level virtual health care delivery. CONCLUSIONS: While further research is needed to evaluate the long-term program outcomes, the results of its early implementation suggest great promise for improved telehealth patient and provider satisfaction, the more equitable delivery of virtual services, and more cost-effective means for supporting virtual care.

4.
J Pain Symptom Manage ; 63(5): 635-644.e3, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35081445

RESUMO

CONTEXT: People with advanced heart failure have supportive and palliative needs requiring systematic assessment. OBJECTIVES: We aimed to assess the validity of the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF). METHODS: Secondary analysis of routinely collected patient data from a specialist palliative care-heart disease service improvement project. NAT:PD-HF, the Integrated Palliative care Outcome Scale (IPOS), and patient and/or carer-report data were collected. Concurrent validity between NAT:PD-HF items and comparison measures (Kendall's tau; kappa); construct validity via known-group comparisons; predictive utility of NAT:PD-HF for survival (multivariable Cox hazard regression model). RESULTS: Data from 88 patients (50% men; mean age 85; median survival 205 days; 64% left ventricular systolic dysfunction) were analyzed. Prevalence- and bias-adjusted kappa values indicated moderate agreement for physical symptom needs (k: 0.33 for patients, 0.42 for carers). Substantial agreement was observed for patient and/or carer psychological symptoms, and information needs (k ≥ 0.6). NAT:PD-HF distinguished between patients with different survival, comorbidities, functional scores, and palliative Phase of Illness with moderate to high effect sizes. NAT did not predict survival when adjusted for mortality risk score and functional status (2+ needs HR: 1.52, 95% CI: 1.01-1.74). CONCLUSION: The NAT:PD-HF is a valid tool for clinician assessment of physical, psychosocial, and information patient and/or carer needs.


Assuntos
Insuficiência Cardíaca , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Idoso de 80 Anos ou mais , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/terapia , Humanos , Masculino , Avaliação das Necessidades , Cuidados Paliativos , Prognóstico
5.
Ann Palliat Med ; 10(7): 7416-7427, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34263630

RESUMO

BACKGROUND: Heart failure is a complex clinical syndrome affecting an increasing number of the ageing population. Patients and carers require increasing input from specialist palliative care services to both manage symptoms and access support in the last year of life. An integrated clinical service between the local cardiology team at Princess Royal University Hospital and the palliative care team at St. Christopher's Hospice was piloted for patients with end-stage heart failure in Bromley in Kent, UK. This study explored views of patients and carers who participated in the integrated pilot service. METHODS: A qualitative study was conducted in which a convenience sample of patients and carers were invited to participate in focus groups: two bereaved carer groups (n=2, n=2); one patient group (n=4), held between 14th December 2018 and 18th January 2019. Participants were asked to describe their experiences of care received facilitated by a topic guide. Interviews were recorded, transcribed and coded using thematic analysis to identify common themes. RESULTS: Four patients (2:2 M:F) aged between 70 to 87 years and four female carers whom had cared for patients aged between 70 to 96 years who were since deceased, participated in this study. Overall, the service was positively received, and responses were mapped into four key areas; being diagnosed and living with heart failure, referral to palliative care, key helpful components of the care received and finally, unhelpful components of the new service in terms of care. Common themes emerged including understanding of heart failure and its trajectory, communication around palliative care, having a 'broker' for the system, recognition of carer's needs, service responsiveness, and feeling 'in control'. CONCLUSIONS: This qualitative study highlighted important considerations when developing an integrated heart failure and palliative care service. Education about heart failure for patients and carers, but also the integrated multidisciplinary team is crucial to improving detection of deterioration and facilitating communication around Advance Care Planning. The value of the 'expert-carer' should also be promoted and supported in chronic conditions. We recommend a focus on development of integrated services that enable joined-up care or single point of contact for patients and carers.


Assuntos
Insuficiência Cardíaca , Cuidados Paliativos na Terminalidade da Vida , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Feminino , Grupos Focais , Insuficiência Cardíaca/terapia , Humanos , Cuidados Paliativos
6.
PLoS One ; 14(9): e0210731, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31557183

RESUMO

OBJECTIVE: Soft tissue sarcoma (STS) is a rare cancer type that when locally advanced or metastatic, is predominantly treated with palliative chemotherapy with the aim of improving both quantity and quality of life. Given modest survival data after commencing first line chemotherapy, this study examines (i) what constitutes health related quality of life (HRQoL), (ii) whether the most commonly used HRQoL assessment tool measures this and (iii) to what extent HRQoL, and its components, change during and after treatment. DESIGN: Mixed-methods longitudinal study of 66 sarcoma patients living with STS (42 commencing chemotherapy, 24 under surveillance after completing chemotherapy) involving serial EORTC QLQ-C30 questionnaires and nested-qualitative semi-structured interviews with a sub-sample of participants. EORTC QLQ-C30 score change from baseline to primary evaluation point was examined using a paired t-test. Interviews were analysed using the framework approach before both datasets were integrated. RESULTS: Five main factors, including control of pain, were identified by study participants as important components of HRQoL; these are examined within the EORTC QLQ-C30. However, others e.g. independence loss and common causes of anxiety, are not. Whilst social and psychological domains are addressed by the EORTC QLQ-C30, the quantitative change over time did reflect qualitative descriptions of decline. The mean overall EORTC QLQ-C30 HRQoL score deteriorated from baseline (60.4) to the primary evaluation point (50.2) [change of -10.2, t-test: -2.70, p = 0.01] for those receiving chemotherapy; this was in concordance with patients' qualitative accounts. Baseline overall HRQoL scores were higher in the surveillance group suggesting a correlation with chemotherapy response and longer-term improvement in HRQoL. The evidence from both HRQoL scores and qualitative accounts indicated that the presence and control of physical symptoms were particularly important in maintaining HRQoL. Whilst fatigue deteriorated on chemotherapy (baseline 41.7 to 52.8; change of +11.1, t-test +2.51, p<0.05), pain (baseline 41.5 to 32.1; change -9.4, t-test -2.06 p<0.05) and sleep disturbance (43.1 to 28.5; change -14.6, t-test -3.05, p<0.05) both improved. CONCLUSION: A key finding was that the EORTC QLQ-C30 assesses some but not all of the patient-reported components of HRQoL in sarcoma patients highlighting the need for either STS specific modules within the EORTC QLQ-C30 or a completely new STS specific HRQoL tool. First line palliative chemotherapy improves specific symptoms known to be prevalent and to influence HRQoL in this patient group which in some patients may translate to sustained improvement in HRQoL: further exploration and validation of these findings in larger prospective studies are warranted.


Assuntos
Tratamento Farmacológico/normas , Cuidados Paliativos/normas , Qualidade de Vida , Sarcoma/terapia , Neoplasias de Tecidos Moles/terapia , Adulto , Idoso , Tratamento Farmacológico/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Pacientes/psicologia
7.
BMJ Support Palliat Care ; 9(1): 100-107, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26715566

RESUMO

OBJECTIVES: Prognostic disclosure among patients with cancer permits open informed discussion about treatment preferences and encourages advance care planning. In rare cancers such as soft tissue sarcoma, discussions regarding prognostication are challenging. Little is known about the consequences of this for patients or their preferences for such information. This qualitative study explores patient-centered accounts of the value and timing of prognostic discussions. METHODS: 24 semistructured interviews were conducted with soft tissue sarcoma patients attending one London cancer centre: 66% female, median age 53 (range 19-82). The study was cross-sectional and participants were at different stages of the advanced disease trajectory. Interviews were digitally recorded, transcribed verbatim and analysed thematically using the framework approach. RESULTS: All participants understood the incurable nature of advanced sarcoma. However, prognostic discussions were rare, always patient initiated and did not include known survival data, despite direct participant enquiry. Most participants did not wish to discuss prognosis at initial diagnosis but wished to be offered the opportunity to discuss this at intervals of disease progression, despite reservations it may not be helpful. Participants expected discussions to be clinician initiated. Three themes emerged to explain this position and included (1) Rarity causing prognostic uncertainty referring to patient belief that prognostication in rare cancers was less likely to be accurate than for common tumours; (2) Avoiding the negatives referring to a wish not to hear unfavourable information and (3) Physical symptoms a better prognostic indicator than 'physician guess'. CONCLUSIONS: Although 17/24 participants preferred not to discuss prognosis at initial diagnosis, they wished to have the opportunity to revisit prognostic discussions at intervals of disease progression. This may facilitate better advance care planning and end of life care.


Assuntos
Planejamento Antecipado de Cuidados , Revelação , Médicos/psicologia , Sarcoma/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Londres , Masculino , Pessoa de Meia-Idade , Prognóstico , Pesquisa Qualitativa , Incerteza , Adulto Jovem
8.
Ann Palliat Med ; 7(Suppl 3): S164-S175, 2018 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-30180731

RESUMO

BACKGROUND: Older people with multimorbidities are projected to be the main recipients of palliative care in the coming decades. However, because their specific palliative care needs are poorly understood and service response is underdeveloped, older people with multimorbidity are less likely to receive palliative care. Innovative specialist palliative care services are developing to address this gap, but with little underpinning evidence. Therefore the aim of this paper is to describe the clinical characteristics, symptoms and other concerns of older people with multi-morbidity referred to a new community palliative care service; and to explore possible implications for service delivery by comparing this service population with people receiving standard community-based specialist palliative care. METHODS: Cross-sectional study comparing routinely collected demographic, clinical, and point-of-care patient-level outcomes data [Phase of Illness, Australia-modified Karnofsky Performance Status (AKPS) and Integrated Palliative care Outcome Scale] across an innovative palliative service-Bromley Care Coordination (BCC) with patients in the standard specialist community palliative care (SC). Composite case studies of BCC patients provide more in-depth illustration of results. RESULTS: Compared with patients who received Standard Care, patients seen by BCC were more often female, older and with a non-malignant diagnosis (16% cancer in BCC versus 72% cancer in SC). Patients across the two services had a similar symptom profile at first contact in the pairwise complete case analysis. SC patients reported more frequently pain, nausea, vomiting, constipation, anxiety and family concern, and BCC patients reported more frequently mobility concerns. Functional status was lower for BCC patients on entry into the service (AKPS 40 median versus SC AKPS of 50). BCC patients stayed longer in each phase of illness (56 days median versus SC 41 days), with a more unpredictable subsequent phase. CONCLUSIONS: The population of older people with multimorbidity has not been routinely recognized as having specialist palliative care needs. However, this evaluation shows that, at first contact, the symptoms and concerns across both service populations was surprisingly similar. Nevertheless, patterns of symptoms may differ between populations over time. Longitudinal prospective data are needed to examine these changes overtime, and the relationship with multimorbidity.


Assuntos
Comorbidade , Serviços de Saúde para Idosos , Avaliação de Estado de Karnofsky , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Austrália , Estudos Transversais , Feminino , Humanos , Masculino
9.
Thorax ; 73(9): 880-883, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29150549

RESUMO

The inter-rater/test-retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George's Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test-retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall's tau-b, 0.24-20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23-20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated.


Assuntos
Progressão da Doença , Doenças Pulmonares Intersticiais/complicações , Doenças Pulmonares Intersticiais/terapia , Cuidados Paliativos , Humanos , Doenças Pulmonares Intersticiais/diagnóstico , Avaliação das Necessidades , Variações Dependentes do Observador , Psicometria , Reprodutibilidade dos Testes
10.
J Pain Symptom Manage ; 53(3): 588-597, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28042077

RESUMO

CONTEXT: There is little information on symptom prevalence and severity in advanced soft-tissue sarcoma (STS). Understanding symptom burden will aid clinical consultations, clarify which symptom interventions are needed, and better define optimum timings of palliative and supportive care referrals. OBJECTIVES: To describe symptom prevalence and severity in patients undergoing different treatment options for advanced STS: 1) first-line palliative chemotherapy (FLC), 2) active surveillance (AS) pre- and post-FLC, and 3) palliative care (PC) alone. METHODS: Cross-sectional survey in one sarcoma center using the patient-reported Memorial Symptom Assessment Scale-Short Form (MSAS-SF). Symptom prevalence, severity, and MSAS-SF subscales were recorded before commencing a new treatment. Our results were compared with other MSAS-SF cancer and noncancer data. RESULTS: One-hundred and thirteen patients (mean age, 59 years) were recruited. Forty-two commenced FLC, 27 started AS pre-FLC, 24 AS post-FLC, and 20 PC alone. Median overall number of reported symptoms was 11 (range 1-31): which when stratified by treatment meant AS pre-FLC < AS post-FLC < FLC < PC alone (most symptomatic). The commonest physical symptoms were pain (77%; 95% CI 68-84), lack of energy (73%; CI 63-81) difficulty sleeping (56%; CI 46-65), feeling bloated (49%; CI 39-58), and dyspnea (49%; CI 39-58). Distress levels were commensurated with prevalence except for dyspnea, which was disproportionally less distressing. Psychological distress was moderate (mean MSAS-PSYCH: 1.39) but higher than comparative cancer data. CONCLUSION: Advanced STS patients have a clinically important symptom burden comparable to other cancers. Common symptoms should be screened and addressed appropriately, including timely PC involvement.


Assuntos
Sarcoma/epidemiologia , Sarcoma/fisiopatologia , Antineoplásicos/uso terapêutico , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Medidas de Resultados Relatados pelo Paciente , Prevalência , Sarcoma/terapia , Índice de Gravidade de Doença
11.
Br J Pain ; 10(1): 29-37, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27551409

RESUMO

BACKGROUND: Treatment for head and neck cancer can frequently be a painful experience with implications for patients in terms of quality of life, nutrition and ultimately treatment outcomes. Pain may arise for a number of reasons in this patient group including the influence of localised tissue damage from radiotherapy, the effects of chemotherapeutic agents as well as the disease process itself. Early identification of cancer pain, through screening and early analgesic and pain management are thought to be the most appropriate approaches to the problem. AIM: To explore in-depth, patients' views of the experience of pain related to radiotherapy for head and neck cancer, within the context of a randomised controlled trial (RCT) of pain screening and intervention. SAMPLE: A purposive sample of head and neck cancer patients undergoing radiotherapy who were participating in a separate RCT of a proactive pain screening intervention. METHODS: A qualitative design using one-off, face-to-face, in-depth interviews. Data were inductively analysed for themes using thematic analysis. Data were collected from September 2012 to January 2013. FINDINGS: Eight participants were interviewed. Several issues around pain management arose and the influence of various factors became apparent. Four dominant themes emerged: facets of radiotherapy pain in head and neck cancer, facilitators and barriers to pain management, pain services and finally interdisciplinary working. CONCLUSION: The specific issues faced by head and neck cancer patients undergoing radiotherapy highlight the need for pain relieving interventions delivered by pain specialists, in tandem with the development of robust self-management strategies. An integrated approach to care is optimal, comprising pain screening at each outpatient encounter, and review by specialists as necessary.

12.
Eur J Pharm Sci ; 86: 41-9, 2016 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-26946441

RESUMO

BACKGROUND: Polymorphisms in the opioid receptor genes may affect the pharmacodynamics (PD) of oxycodone and be part of the reason behind the diversity in clinical response. The aim of the analysis was to model the exposure-response profile of oxycodone for three different pain variables and search for genetic covariates. Model simulations were used to predict how population and effect-size impact the power to detect clinical significant SNPs. METHOD: The population pharmacokinetic-pharmacodynamic (PKPD) model of oral single-dosed oxycodone was based on pooled data from three published studies in healthy volunteers. Pain tolerance data from muscle pressure (n=36), visceral pressure (n=54) and skin pinch (n=34) were included. Genetic associations with 18 opioid-receptor SNPs were explored using a stepwise covariate approach. Model simulations were performed using the estimated model parameters. RESULTS: None of the selected SNPs were associated with analgesic response of oxycodone at P<0.001. Baseline response in muscle cuff pressure was associated with OPRK1 rs7016778 and rs7824175 (P<0.001). Simulations indicated that large differences in drug response between genotypes (>50% for similar population sizes) or large populations (n>200 for a 20% response difference) are necessary to identify clinical significant SNP effects due to high population variability. CONCLUSION: A population PKPD model has been developed for oral oxycodone using three different pain variables to explore impact of genetic covariates and study design. None of the selected polymorphisms were significantly associated with analgesic response of oxycodone, but an association of baseline response in muscle cuff pressure with two OPRK1 SNPs was identified.


Assuntos
Analgésicos Opioides/farmacocinética , Modelos Biológicos , Oxicodona/farmacocinética , Dor/metabolismo , Receptores Opioides/genética , Administração Oral , Adulto , Analgésicos Opioides/uso terapêutico , Método Duplo-Cego , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Oxicodona/uso terapêutico , Dor/tratamento farmacológico , Dor/genética , Polimorfismo de Nucleotídeo Único , Adulto Jovem
13.
J Palliat Med ; 19(5): 549-55, 2016 05.
Artigo em Inglês | MEDLINE | ID: mdl-26840603

RESUMO

BACKGROUND: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. OBJECTIVE: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. METHODS: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group-academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. RESULTS: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. CONCLUSIONS: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.


Assuntos
Doenças Pulmonares Intersticiais , Cuidadores , Humanos , Avaliação das Necessidades , Cuidados Paliativos , Reprodutibilidade dos Testes
16.
Thorax ; 70(9): 830-9, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26103995

RESUMO

BACKGROUND: Those affected by advanced fibrotic interstitial lung diseases (ILDs) have considerable unmet symptom and psychological needs. Case conferencing has been proposed to address these issues, but requires evaluation. AIM: To obtain preliminary information on the impact of a case conference intervention delivered in the home (Hospital2Home) on palliative care concerns of patients and their carers, and to evaluate feasibility and acceptability. METHODS: Hospital2Home was trialled at a specialist centre using a Phase II fast-track randomised controlled trial with qualitative interviews. The primary outcome for effect was mean change from baseline of Palliative Care Outcome Scale (POS) (a measure of symptoms and concerns) at 4 weeks. Secondary outcomes included symptom control, quality of life, consent and recruitment rates and percentage of patients in the fast-track group receiving case conferences within 14 days. RESULTS: 53 patients were recruited (26 fast-track, 27 controls). Mean (SD) POS scores at 4 weeks were -5.7 (7.5) fast-track vs -0.4 (8.0) control, (mean change difference between the two arms was -5.3 (95% CI -9.8 to -0.7) independent t test p=0.02); effect size (95% CI) -0.7 (-1.2 to -0.1). The secondary outcomes of quality of life, anxiety and depression were superior in the fast-track arm, and none were worse. Qualitative findings corroborate these data. Recruitment was successful and 53/67 (79%) of eligible patients consented. 6/25 (24%) had case conferences within 14 days. CONCLUSIONS: Community case conferences improve palliative symptoms and quality of life after 4 weeks. Hospital2Home for the most part is both feasible and acceptable. It now requires further testing in multicentre trials. TRIAL REGISTRATION NUMBER: NCT01450644.


Assuntos
Doenças Pulmonares Intersticiais/terapia , Cuidados Paliativos/métodos , Fibrose Pulmonar/terapia , Qualidade de Vida/psicologia , Adulto , Idoso , Cuidadores/psicologia , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
17.
Fundam Clin Pharmacol ; 29(4): 417-25, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-26042474

RESUMO

Human experimental pain studies are of value to study basic pain mechanisms under controlled conditions. The aim of this study was to investigate whether genetic variation across selected mu-, kappa- and delta-opioid receptor genes (OPRM1, OPRK1and OPRD1, respectively) influenced analgesic response to oxycodone in healthy volunteers. Experimental multimodal, multitissue pain data from previously published studies carried out in Caucasian volunteers were used. Data on thermal skin pain tolerance threshold (PTT) (n = 37), muscle pressure PTT (n = 31), mechanical visceral PTT (n = 43) and thermal visceral PTT (n = 41) were included. Genetic associations with pain outcomes were explored. Nineteen opioid receptor genetic polymorphisms were included in this study. Variability in oxycodone response to skin heat was associated with OPRM1 single-nucleotide polymorphisms (SNPs) rs589046 (P < 0.0001) and rs563649 (P < 0.0001). Variability in oxycodone response to visceral pressure was associated with four OPRM1 SNPs: rs589046 (P = 0.015), rs1799971 (P = 0.045), rs9479757 (P = 0.009) and rs533586 (P = 0.046). OPRM1 SNPs were not associated with oxycodone visceral heat threshold, however, one OPRD1 rs419335 reached significance (P = 0.015). Another OPRD1 SNP rs2234918 (P = 0.041) was associated with muscle pressure. There were no associations with OPRK1 SNPs and oxycodone response for any of the pain modalities. Associations were found between analgesic effects of oxycodone and OPRM1 and OPRD1 SNPs; therefore, variation in opioid receptor genes may partly explain responder characteristics to oxycodone.


Assuntos
Analgésicos Opioides/uso terapêutico , Oxicodona/uso terapêutico , Dor/tratamento farmacológico , Dor/genética , Adulto , DNA/genética , Método Duplo-Cego , Feminino , Genótipo , Temperatura Alta , Humanos , Masculino , Medição da Dor/efeitos dos fármacos , Limiar da Dor/efeitos dos fármacos , Estimulação Física , Polimorfismo Genético/genética , Polimorfismo de Nucleotídeo Único , Pressão , Receptores Opioides delta/efeitos dos fármacos , Receptores Opioides delta/genética , Receptores Opioides kappa/efeitos dos fármacos , Receptores Opioides kappa/genética , Receptores Opioides mu/efeitos dos fármacos , Receptores Opioides mu/genética
19.
J Pain Symptom Manage ; 49(2): 161-72, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24975432

RESUMO

CONTEXT: There is wide interindividual variation in response to morphine for cancer-related pain; 30% of patients do not have a good therapeutic outcome. Alternative opioids such as oxycodone are increasingly being used, and opioid switching has become common clinical practice. OBJECTIVES: To compare clinical response to oral morphine vs. oral oxycodone when used as first-line or second-line (after switching) treatment in patients with cancer-related pain. METHODS: In this prospective, open-label, randomized, controlled trial (ISRCTN65155201) with a selected crossover phase, patients with cancer-related pain were randomized to receive either oral morphine or oxycodone as first-line treatment. Dose was individually titrated until the patient reported adequate pain control. Patients who did not respond to the first-line opioid (either because of inadequate analgesia or unacceptable adverse effects) were switched to the alternative opioid. RESULTS: Two hundred patients were recruited. On intention-to-treat analysis (n = 198, morphine 98, oxycodone 100), there was no significant difference between the numbers of patients responding to morphine (61/98 = 62%) or oxycodone (67/100 = 67%) when used as a first-line opioid. Similarly, there was no significant difference in subsequent response when patients were switched to either morphine (8/12 = 67%) or oxycodone (11/21 = 52%). Per-protocol analysis demonstrated a 95% response rate when both opioids were available. There was no difference in adverse reaction scores between morphine and oxycodone either in first-line responders or nonresponders. CONCLUSION: In this population, there was no difference between analgesic response or adverse reactions to oral morphine and oxycodone when used as a first- or second-line opioid. These data provide evidence to support opioid switching to improve outcomes.


Assuntos
Analgésicos Opioides/uso terapêutico , Morfina/uso terapêutico , Neoplasias/fisiopatologia , Oxicodona/uso terapêutico , Dor/tratamento farmacológico , Dor/fisiopatologia , Analgésicos Opioides/efeitos adversos , Estudos Cross-Over , Substituição de Medicamentos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Morfina/efeitos adversos , Oxicodona/efeitos adversos , Estudos Prospectivos , Resultado do Tratamento
20.
Palliat Med ; 27(9): 869-76, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23885010

RESUMO

BACKGROUND: While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted. AIM: This study aims to explore the specialist palliative care needs of people living with end-stage progressive idiopathic fibrotic interstitial lung disease. DESIGN AND SETTINGS/PARTICIPANTS: In total, 18 qualitative semi-structured in-depth interviews were conducted with patients, their informal caregivers and health professionals across two specialist interstitial lung disease centres in London and in the community. RESULTS: Many participants reported uncontrolled symptoms of shortness of breath, cough and insomnia, which profoundly impacted every part of patients' and informal caregivers' lives. Psychologically, patients were frustrated and angry at the way in which their illness severely limited their ability to engage in activities of daily living and compromised their independence. Furthermore, both patients and informal caregivers also reported that the disease seriously affected family relationships where strain was pronounced. There was varied knowledge and confidence among health professionals in managing symptoms, and psychosocial needs were often underestimated. CONCLUSION: This study is the first of its kind to examine in depth the impact of symptoms and psychosocial needs revealing the profound effect on every aspect of progressive idiopathic fibrotic interstitial lung disease patients' and informal caregivers' lives. Education and guidance of appropriate palliative care interventions to improve symptom control are needed. A case conference intervention with individualised care plans may help in addressing the substantial symptom control and psychosocial needs of these patients and informal caregivers.


Assuntos
Doenças Pulmonares Intersticiais/complicações , Avaliação das Necessidades , Cuidados Paliativos , Pacientes/psicologia , Adulto , Cuidadores/psicologia , Feminino , Pessoal de Saúde/psicologia , Humanos , Entrevistas como Assunto , Doenças Pulmonares Intersticiais/terapia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade da Assistência à Saúde
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