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1.
Ann Palliat Med ; 13(3): 654-660, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38769799

RESUMO

Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life than dialysis. The clinical course after kidney transplantation could be complex and variable. Patients may develop various complications or even kidney graft failure. Symptom burden related to uraemia in patients with graft failure, and the side-effects of immunosuppression, cause psychological distress and adversely affect the quality of life of patients. Treatment decisions in patients with graft failure can be challenging to patients and their caregivers. Renal palliative care is an emerging field, but its adoption remains relatively low among kidney transplant recipients with progressive graft failure. In this context, timely consideration and referral for palliative care can improve symptom burden, reduce stress in patients and their caregivers, and facilitate treatment goal setting and advanced care planning. Common barriers to bring palliative care to suitable patients include: (I) misconception in patients, caregivers and healthcare providers that palliative care means abandonment of life sustaining treatment; (II) over-optimistic prognostic assessment and over-aggressive management approach; (III) insufficient awareness and training in palliative care of healthcare professionals; (IV) inadequate access to and insufficient resources in palliative care. Enhanced training and awareness, and further studies, would be needed to optimize the decision process and delineate the benefit of palliative care, and to guide evidence-based practice in the transplant population.


Assuntos
Falência Renal Crônica , Transplante de Rim , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Falência Renal Crônica/terapia , Rejeição de Enxerto , Qualidade de Vida
4.
J Pain Symptom Manage ; 67(4): e355-e360, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38215894

RESUMO

BACKGROUND: Despite the growing needs in nondialytic alternatives for conservative kidney management, few studies have examined the management of anemia in palliative care (PC) outpatient clinics, which represent the key point of entry for timely access to PC. OBJECTIVE: A retrospective study to review for a patient-centered approach in anemia management and symptom control. RESULTS: Over the study period from July 2020 to March 2023, a total of 158 patients were seen at our renal PC clinic, 47 were included in data analysis. Patients had a mean age and glomerular filtration rate of 81.3 (9.5) years and 8.6 (5.3) mL/min/1.73 m2, and 68.1% and 44.7% were receiving erythropoiesis-stimulating agents (ESAs) and iron supplements respectively, with only 4.3% of patients required transfusion over past six months. Mean hemoglobin was maintained at 9.8 (1.4) g/dL, with a mean POS-S renal score of 4.7 (3.2). Majority of patients (93.6%) had satisfactory rating on "weakness and lack of energy" item. CONCLUSION: A patient-centered approach in anemia management at renal PC outpatient clinics may alleviate symptom burden and minimize transfusion requirement.


Assuntos
Anemia , Falência Renal Crônica , Humanos , Instituições de Assistência Ambulatorial , Anemia/terapia , Rim , Cuidados Paliativos , Assistência Centrada no Paciente , Estudos Retrospectivos
5.
JAMA Psychiatry ; 80(11): 1089-1090, 2023 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-37703027

RESUMO

This Viewpoint describes specific issues related to severe mental illnesses for palliative care.


Assuntos
Transtornos Mentais , Psiquiatria , Humanos , Cuidados Paliativos
6.
BMJ Support Palliat Care ; 13(3): 309-311, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36804734

RESUMO

Palliative care (PC) has expanded to medical conditions beyond its conventional scope of terminal malignancy and end-stage organ failure. This editorial showed our opinion in care model for the integration of PC into rheumatology and the growing needs of both rheumatology and PC services in view of increasing comorbidities and novel therapies. We anticipate an escalating demand for PC in this special group of patients who have concomitant long-standing systemic rheumatic diseases and age-related comorbidities. In addition, patients with advanced malignancy who develop rheumatological problems and require PC is also an emerging area of service need.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Reumatologia , Humanos , Cuidados Paliativos , Neoplasias/terapia
7.
J Gastrointest Oncol ; 14(6): 2521-2535, 2023 Dec 31.
Artigo em Inglês | MEDLINE | ID: mdl-38196520

RESUMO

Background: Both in vitro and in animal studies have shown immunosuppressive effects of opioids which might provoke tumour growth and metastasis, while no definite results were shown in previous clinical studies. To find out the effects between general anaesthesia combined with sufentanil target-controlled infusion (SGA) and general anaesthesia combined with epidural anaesthesia (EGA) on immunological alterations, stress responses and prognosis in patients undergoing open hepatectomy, a prospective, non-inferiority, randomized-controlled study was performed. Methods: Patients with liver neoplasms undergoing open hepatectomy were randomly assigned to either SGA (n=81) or EGA (n=81) group. The primary outcome was the ratio of interferon (IFN)-γ/interleukin (IL)-4 at 24 h after surgery (T3). The secondary outcomes included immune-related cytokines, circulating immune cells, stress-related cytokines, cortisol and blood glucose, visual analogue scale scores. Plasma was sampled at five-time points [baseline/before surgery (T0), 5 min after portal block release (T1), 1 h after surgery (T2), T3, and on a postoperative day (POD)5 (T4)]. Cancer-related outcomes, including recurrence, metastasis and survival, were followed up at 3 months and 1 year after surgery. Results: The IFN-γ/IL-4 ratios were comparable between both groups at T3 {median [interquartile range (IQR)]: 20.78 (12.73-29.18) vs. 19.52 (13.98-29.29), P=0.607}. At T3, the proportions of circulating T cells were decreased, while those of B and natural killer cells were increased. The plasma level of tumour necrosis factor (TNF)-α at T2 was significantly higher in the SGA group [median (IQR): 7.45 (6.20-9.80) vs. 5.95 (4.95-7.45) pg/mL, P<0.001]. Patient-controlled intravenous analgesia was less effective than epidural analgesia on POD0 and POD2. For hepatocellular carcinoma (HCC)-related outcomes, no significant differences were found in either short- or long-term follow-ups. Conclusions: Although the levels of TNF-α were higher in the SGA group, the tumour-related immunological alterations and follow-ups showed no difference between groups. SGA appears not to be inferior to EGA regarding tumour-related immunity and prognosis. Intravenous opioid use appears not to be inferior to epidural anaesthesia, and can be used safely in HCC patients without worsening patients' prognosis. Trial Registration: Chinese Clinical Trial Registry (No. ChiCTR2000035299).

8.
Ann Palliat Med ; 11(10): 3273-3291, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36267009

RESUMO

BACKGROUND AND OBJECTIVE: Recent advances have led to cure or long-term disease control for patients with hematological malignancy (HM). Unfortunately, some of them still have poor prognoses and are often associated with significant symptom burden and poor quality of life for patients and families. These patients usually require supportive care including red blood cell and platelet transfusion, due to disease itself and the oncological treatment, apart from their symptom management. However, there is currently lack of the literatures review in these aspects. The objective of this review is to summarize practical supportive care recommendations for physicians or nurses practicing in palliative care (PC)/hematology-oncology unit, starting with core approaches in use of blood products for anemia and thrombocytopenia, management of tumor lysis syndrome, PC and oncology nursing care. METHODS: Evidence for this review was obtained from a search of the Cochrane database, PubMed, guidelines of European Society of Medical Oncology, British society of Hematology, American Society of Clinical Oncology, National Comprehensive Cancer Network and peer-reviewed journal articles. KEY CONTENT AND FINDINGS: For asymptomatic cancer patients who are anaemic, a threshold of haemoglobin level of 7 g/dL is considered to be safe and generally favored for blood transfusion. 'Single-unit' red cell transfusion is safer and at least as effective as 'double-unit' transfusion. Prophylactic platelet transfusion should be given to stable patients without bleeding and with platelet count less than 10×109/L. In febrile patients, the threshold is lifted to 20×109/L. There are also recommendations for the use of blood products during COVID-19 pandemic. In general, HM patients were more prone to painful infections when compared with solid cancer patients. Thus, antibiotics to treat underlying infections should be applied whenever possible and as required to control pain. CONCLUSIONS: This narrative review showed the recent literatures in the supportive care and symptom management of advanced HM patients. However, it is limited by some of the 'evidence-based' recommendations for interventions (including symptom management) based on early phase of HM populations rather than those receiving end-of-life care.


Assuntos
COVID-19 , Neoplasias Hematológicas , Neoplasias , Humanos , Cuidados Paliativos , Qualidade de Vida , Pandemias , COVID-19/terapia , Neoplasias Hematológicas/tratamento farmacológico
9.
Ann Transl Med ; 10(18): 998, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36267754

RESUMO

Background: Pain is a common symptom among cancer patients and directly affects their prognosis. As the leading drug for pain management, opioids are widely prescribed. So it is necessary to get people a correct understanding and application of opioids. In order to examine whether the use of high-dose opioids might affect survival and quality of life, this retrospective cohort study was performed to explore the outcomes of patients receiving high-dose opioids for pain management in a first-class tertiary hospital in China. Methods: We retrospectively searched medical records of inpatients and outpatients with pain who were treated with opioids in The First Affiliated Hospital, Zhejiang University School of Medicine from July to December 2021. Forty-three cases who were treated with high-dose opioids meeting inclusion criteria. Among these patients, 37 had cancer pain and 6 had neuropathic pain. All patients had regular follow-up when readmission until to April 7, 2022. Medical records of patients on high-dose opioids (equivalent to morphine ≥300 mg/d) was collected, including numerical rating scale (NRS), Karnofsky performance score (KPS), survival and adverse drug reactions (ADRs). Pain relief, quality of life, survival, and ADRs of patients after pain treatment were analyzed and evaluated. Results: The NRS score was significantly reduced and pain was relieved after high-dose opioid treatment. The before and after average NRS score of cancer pain was 5.2±1.6 vs. 2.2±1.1 points (P<0.001), neuropathic pain was 5.0±2.2 vs. 1.3±1.2 points (P<0.05), respectively. Although there is no statistical difference, quality of life showed a trend of improvement compared with before treatment. The before and after average KPS scores of cancer pain patients was 55.7±17.3 vs. 62.4±20.0, and neuropathic pain patients was 71.7±9.0 vs. 83.3±4.7. There were no intolerable ADRs. The median survival time was 238 days and 83 days in patients with cancer pain who received high-dose opioids and ultra-high dose opioids (equivalent to morphine ≥600 mg/d). Conclusions: Multimodal high-dose opioid pain treatments are important approaches to effectively relieve moderate to severe pain and improve the quality of life of patients. This study provides a clinical basis for future pain treatment with high-dose opioids.

12.
Ann Palliat Med ; 10(9): 10013-10021, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-34628925

RESUMO

BACKGROUND: Patients with acute myeloid leukaemia (AML) and myelodysplastic syndrome (MDS) suffer from a significant symptom burden and psychological, spiritual, social needs comparable to patients with solid metastatic malignancy. Referral to palliative care services for these haematological patients remains limited or often confined to the last days of life. We pioneered a palliative care (PC) program integrated with standard haematological care. The purpose of this trial will study the interventions by the PC team and preliminary results in the clinical outcomes. METHODS: This project is a non-blinded, randomized, controlled trial. In this study, we examine the clinical outcomes of the integrated PC program for MDS/AML patients when the 2nd lines disease treatment failed and in the presence of prognostic indicators. In group 1, patients will receive standard haematological care associated with PC (i.e., intervention group). In contrast, in group 2, patients will receive standard haematological care only (i.e., control group) with PC service only on a request basis. Patients who join the program would have to complete a standardized questionnaire to assess their quality of life and their psychological and physical symptoms. RESULTS: This is to exam the impact of the early integrated palliative care with enhanced psychosocial interventions to both advanced MDS/AML patients and their primary family members in Hong Kong. DISCUSSION: This protocol will not display any result. If future results demonstrate that the enhanced PC interventions are effective, they will provide a quality treatment plan for patients with MDS/AML. TRIAL REGISTRATION: The Hong Kong University/Hospital Authority Hong Kong West Institutional Review Board (HKU/HA HKW IRB). The registration number is UW 19-824.


Assuntos
Hematologia , Leucemia Mieloide Aguda , Síndromes Mielodisplásicas , Humanos , Leucemia Mieloide Aguda/terapia , Síndromes Mielodisplásicas/terapia , Cuidados Paliativos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
13.
Ann Palliat Med ; 10(6): 6316-6324, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-34237956

RESUMO

BACKGROUND: Evidence showed that early palliative care could have many benefits in clinical outcomes for patients living with advanced medical illnesses. In fact, most of these studies have not involved patients with advanced haematologic cancer (HC), which are known to be associated with significant physical and psychological symptoms. In Hong Kong, an Early Integrated Palliative Care (EIPC) collaboration involving both Heamatology unit of Queen Mary Hospital (QMH) and the Palliative Medical Unit of Grantham Hospital (GH) has been started since early 2018 as a better way to improve the service gap. The HC patients failed 2 or more lines of cancer treatment are identified during the joint round and hematology clinic. Some of these patients will be referred to our PC services. Our joint PC clinic has multidisciplinary input from palliative care physicians, hematologists, and clinical psychologists. The clinic program is well coordinated and structured. The HC patients are initially seen by the parent team for disease treatment and then by GH PC team for symptom control and psychosocial care. METHODS: This was a retrospective study with a review of the clinical charts and electronic healthcare records of all patients who attended the Hematology PC clinic from June 2018 to September 2020. For the inclusion criteria, patients were found eligible if they had prospectively completed Edmonton Symptom Assessment Scale (ESAS) assessments for at least the initial and follow-up visits within a range of ≥7 days and ≤60 days of the first visit. RESULTS: Thirty-eight patients ultimately agreed to the referral. The mean age was 70.5 (12.5) years old. Twenty-five patients (66%) had myelodysplastic syndrome (MDS); 10 (26%) had acute myeloid leukemia (AML). Around 50-60% of patients reported significant symptoms of fatigue, anxiety, drowsiness, and anorexia; 42% of patients had significantly depressed moods while 37% had pain. There were significant symptom improvements for pain, depression, and anxiety after follow-up visits. CONCLUSIONS: The study showed that our EIPC program resulted in a significant reduction in some of the important symptom item scores, including pain, anorexia, anxiety, and depression, after the follow-up visits.


Assuntos
Hematologia , Neoplasias , Cuidados Paliativos , Idoso , Hong Kong , Humanos , Estudos Retrospectivos
14.
Ann Palliat Med ; 10(2): 1421-1430, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33081477

RESUMO

BACKGROUND: Structured advance care planning (ACP) program is an important service in the end-of-life care for patients with advanced medical illness. We pioneered a structured and coordinated ACP program for patients with advanced malignancies and end-stage organ failure in Hong Kong. This study investigated the impact of a structured ACP program on the concordance rate for patients' final wishes, patient/family satisfaction, and the number of acute admissions (AA) and length of stay (LOS) in hospital. METHODS: Patients with advanced malignancy or end-stage organ failure who were able to complete ACP forms during the current admission to medical units were recruited. Patients who could not complete ACP forms or <18 years of age were excluded. The ACP program comprised the following components: (I) baseline education (workshop/role play) in ACP sessions for linked nurses of different medical units; (II) structured ACP discussions with recruited patients and their proxies during admission, after any change in clinical status, and also at monthly intervals; (III) formal structured review of patients' goals at regular team meetings; (IV) "flagging" of advance directive (AD) in hospital computer system and (V) feedback to linked nurse on the congruence of care. Mentally competent patients who did not receive ACP and matched for disease and demographics were selected as controls in a 1:2.5 ratio. RESULTS: Two hundred forty-three patients were included for analysis between August 2016 and July 2017, of which 69 patients joined the ACP program and 174 of them did not. Two hundred and one patients (83%) had advanced cancer. All had done do-not-attempt-cardiopulmonary-resuscitation (DNACPR) order in the ACP group. The concordance rates for patients' wishes on quality of life, end-of-life and funeral arrangements were 95%, 100% and 100% respectively. Over 70% of patients and their families (N=10) showed satisfaction with the program. The ACP group also had lower mean AA and shorter LOS (0.78±0.23 vs. 1.2±0.8 episode/patient, 4.6±1.7 vs. 7.5±2.5 days, P=0.037 and P=0.023 respectively) in the last 3 months of life compared with the non-ACP group. CONCLUSIONS: This ACP program achieved high concordance rate for patients' wish items and reduced healthcare utilization.


Assuntos
Planejamento Antecipado de Cuidados , Assistência Terminal , Diretivas Antecipadas , Hong Kong , Humanos , Qualidade de Vida
15.
J Palliat Med ; 23(11): 1518-1524, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32023134

RESUMO

Background: Fluid management is a clinical challenge in patients with end-stage renal disease (ESRD), especially among those who opted for conservative treatment. We initiated a comprehensive program of psychosocial interventions. Objectives: To study the impact of this psychoeducational (Appropriate amount of intake, Self-efficacy, and Adherence [ASA]) program on symptom burden and acute admission rates related to fluid overload (FO) in this group of elderly ESRD patients attending renal palliative care outpatient clinic under our division. Methods: All elderly (age >60 years) patients who were followed in our renal palliative clinic had one or more acute admissions related to FO during the first three months were identified and invited to participate in this program. The palliative care nurse assessed each pair of patient/caregiver before doctor consultation, documented the symptom burden by the Edmonton Symptom Assessment Scale, provided symptom advice with use of pamphlets, monitored fluid and drug compliance, and provided psychosocial-spiritual support. The patient symptom score, body weight (BW), and three month acute admission episodes were compared before and after psychoeducation interventions by paired t test. Results: Data from 138 patients were analyzed. Of them, edema, shortness of breath, and insomnia occurred in 131 (95%), 67 (49 %), and 44 (32%) patients, respectively. A total of 125 patients (90.6%) had poor fluid/diet compliance, whereas 59 patients (42.7%) had poor drug compliance. The BW decreased significantly from 57.1 (12.8) kg at baseline to 52.5 (13.6) kg after three months of the ASA program. The acute admission rate related to FO dropped significantly from 7.6 episodes/patient/year to 6.4 episodes/patient/year. Conclusion: Our data demonstrated that the ASA program could improve patient symptoms and reduce acute hospital admissions, and thus improve the overall patient wellbeing and reduce health care utilization. Further studies are required to delineate the efficacy of different components in this ASA program and how to enhance its delivery.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Falência Renal Crônica , Idoso , Cuidadores , Humanos , Falência Renal Crônica/terapia , Pessoa de Meia-Idade , Cuidados Paliativos , Aceitação pelo Paciente de Cuidados de Saúde
16.
J Palliat Med ; 21(6): 809-814, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29596025

RESUMO

BACKGROUND: There is little data on pain management in patients with advanced chronic kidney disease (CKD) who have opted for palliative care. OBJECTIVE: We investigated the prevalence, severity and management of pain in advanced CKD patients attending Renal Palliative Care out-patient clinics under our Division. METHODS: Consecutive patients referred to the Renal Palliative Care Clinics at two hospitals under our Division from July 2012 to June 2016 were included. All the patients were managed according to a multi-disciplinary protocol led by palliative care specialists, including serial assessments with the Edmonton Symptom Assessment System. MEASUREMENTS: Response to pain management was defined as a difference by 2 points or more, and factors predictive of response were assessed by logistic regression. RESULTS: Data from 253 patients were analyzed. Of them 107 patients (42%) experienced pain symptoms: 45 patients (42.1%) rated their pain as mild (score 0-3), 51 (47.7%) as moderate (NRS score 4-6), and 11 (10.2%) as severe (score 7-10) by using numerical rating scale. The response rate to pain management was 53.2%. Neuropathic pain was a predictor for lack of response. DISCUSSION: Pain is common in advanced CKD patients receiving palliative care. While this seems to have been underrecognized, the symptom is potentially amenable to management. We recommend routine assessment of pain burden in this patient population.


Assuntos
Analgésicos/uso terapêutico , Dor Crônica/tratamento farmacológico , Manejo da Dor/métodos , Cuidados Paliativos/métodos , Encaminhamento e Consulta , Insuficiência Renal Crônica/complicações , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino
18.
Ann Palliat Med ; 7(3): 355-358, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29156908

RESUMO

There are unmet palliative care (PC) needs for psychosocial and spiritual distress of neurology patients such as bad stroke as well as in chronic neurodegenerative diseases. As such, psychosocial support to both patients and their caregivers should be enhanced in order to provide comprehensive neuro-PC. The first step in developing this type of support/program was to recognize the main psychosocial care needs of the population. Once these were determined, a program was specifically devised to meet those needs as efficiently and effectively as possible. Several studies have shown the importance and value of psychosocial support for terminally ill patients. Generally, the psychosocial aspects of PC generally receive little or no attention in such studies due to financial limitations and, perhaps more importantly, because PC remains an evolving concept. Recent studies of psychological therapies have yielded relevant results in terms of effectiveness and have shown improvement regarding life meaning and well-being in end-of-life patients. However, there are still gaps in providing psychosocial support to the advanced neurology patients opted for PC.


Assuntos
Doenças do Sistema Nervoso/terapia , Cuidados Paliativos/organização & administração , Apoio Social , Planejamento Antecipado de Cuidados , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Necessidades e Demandas de Serviços de Saúde , Humanos , Doenças do Sistema Nervoso/psicologia , Desenvolvimento de Programas , Estresse Psicológico , Assistência Terminal/organização & administração
19.
Ann Palliat Med ; 7(3): 349-354, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29156917

RESUMO

BACKGROUND: Advanced neurology diseases including motor neuron disease (MND) are usually progressive life-limiting illness and could be devastating for patients, families and caregivers. Although medical technologies, such as enteral feeding and non-invasive ventilation, may prolong life expectancy of the patients, their utilization prompts important ethical questions in regard to their quality of life (QoL). Little attention had been paid on how ACP practice would practically help with patients suffering from different neurology diseases. We are unaware of any published studies on ACP practice among patients with different neurology diseases. In our study, we assessed end-of-life (EOL) care preferences, documentation, and communication in patients with various types of advanced neurology diseases. METHODS: This was a retrospective chart review of all patients referred to the neuro-palliative care team (NPCT) in a local acute hospital in Hong Kong. The study was approved by the institutional review board of the University of Hong Kong. NPCT consultation was hand abstracted from the electronic health record if there was a subspecialty palliative care (PC) consultation note during the study period. Hand abstraction of data also included any content related to advance care planning (ACP) [advance directive (AD), resuscitation order, ventilator support, artificial feeding, patient wishes, legacy]. RESULTS: For patient who signed AD, items including cardiopulmonary resuscitation (100%), mechanical ventilation (100%), artificial nutrition and hydration (80%) were mentioned more frequently than other EOL interventions. For patients who had ACP but without AD, the most common diagnosis is bad stroke (60%). Place of death, artificial nutrition and hydration were most mentioned EOL interventions. CONCLUSIONS: EOL decision making in patients with advanced neurology disease is often delayed. This study showed that MND patients are readier to discuss their EOL issues and signed their AD. The NPCT can play a valuable role in EOL discussions in patients with advanced neurology diseases under collaboration between the PC and the neurology teams.


Assuntos
Planejamento Antecipado de Cuidados , Doenças do Sistema Nervoso/terapia , Assistência Terminal , Adulto , Diretivas Antecipadas , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Feminino , Hong Kong , Humanos , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/terapia , Cuidados Paliativos , Equipe de Assistência ao Paciente , Estudos Retrospectivos , Adulto Jovem
20.
Ann Palliat Med ; 7(3): 320-331, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29156920

RESUMO

Although there is no cure for motor neurone disease (MND), the advent of supportive interventions including multidisciplinary care (MDC) has improved treatment interventions and enhanced quality of life (QOL) for MND patients and their carers. Our integrative review showed evidence-based MDC, respiratory management and disease-modifying therapy that have improved the outcomes of patients diagnosed with MND. Supportive approaches to nutritional maintenance and optimization of symptomatic treatments, including management of communication and neuropsychiatric issues, improve the QOL for MND patients. Notwithstanding improvement to care and QOL, survival benefit has become evident with the advent of a MDC framework, early treatment with non-invasive ventilation (NIV). In addition, weight maintenance remains critical, as weight loss is associated with more rapid disease progression. The endof- life phase is poorly defined in MND patients and treatment remains challenging, yet effective symptom control through palliative care (PC) is achievable and essential.


Assuntos
Doença dos Neurônios Motores/terapia , Cuidados Paliativos , Análise Custo-Benefício , Hospitalização , Humanos , Doença dos Neurônios Motores/economia , Doença dos Neurônios Motores/fisiopatologia , Apoio Nutricional , Cuidados Paliativos/métodos , Equipe de Assistência ao Paciente , Qualidade de Vida , Terapia Respiratória , Apoio Social , Análise de Sobrevida
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