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OBJECTIVE: Breakthrough cancer pain should be properly assessed for better-personalized treatment plan. The Breakthrough Pain Assessment Tool is a 14-item tool validated in English developed for this purpose; no French version is currently available and validated. This study aimed to translate it in French and assess the psychometric properties of a French version of the Breakthrough Pain Assessment Tool (BAT-FR). METHODS: First, translation and cross-cultural adaptation of the 14 items (9 ordinal and 5 nominal) of the original BAT tool in French language was made. Second, assessments of validity (convergent, divergent and discriminant validity), factorial structure (exploratory factor analysis) and test-retest reliability of the 9 ordinal items were done with data of 130 adult cancer patients suffering from breakthrough pain in a hospital-academic palliative care center. Test-retest reliability and responsiveness of total and dimension scores derived from these 9 items were also assessed. Acceptability of the 14 items was also assessed on the 130 patients. RESULTS: The 14 items had good content and face validity. Convergent and divergent validity, discriminant validity and test-retest reliability of the ordinal items were acceptable. Test-retest reliability and responsiveness of total and dimensions derived from ordinal items were also acceptable. The factorial structure of the ordinal items had two dimensions similar to the original version: "1-pain severity and impact" and "2-pain duration and medication". Items 2 and 8 had a low contribution to the dimension 1 they were assigned and item 14 clearly changed of dimension compared with the original tool. The acceptability of the 14 items was good. CONCLUSION: The BAT-FR has shown acceptable validity, reliability and responsiveness supporting its use for assessing breakthrough cancer pain in French-speaking populations. Its structure needs nevertheless further confirmation.
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Dor Irruptiva , Dor do Câncer , Neoplasias , Adulto , Humanos , Reprodutibilidade dos Testes , Dor Irruptiva/diagnóstico , Dor do Câncer/diagnóstico , Inquéritos e Questionários , Idioma , Psicometria/métodos , Neoplasias/complicações , Comparação TransculturalRESUMO
Forty per cent of cancer pain associate neuropathic and nociceptive pain simultaneously, and refractory pain affects 15% of cancer pain. Methadone is an effective opioid in treating nociceptive pain and could have an effect on neuropathic pain. Uncertainty remains on its effects on the different subcomponents of neuropathic pain. OBJECTIVES: To identify which subcomponents of neuropathic cancer pain are addressed using methadone. METHODS: An observational prospective cohort study of palliative care inpatients after rotation for refractory neuropathic cancer pain. Pain intensity was assessed weekly for 28 days, using a Visual Analogue Scale (VAS) and the Neuropathic Pain Symptom Inventory (NPSI). RESULTS: Forty-eight patients were included and 17 completed the 28 days follow-up. VAS pain rating decreased by at least 20 mm in 47% of patients and the pain intensity was significantly lower at day 28 with 53% of patients with a VAS inferior to 4 (p<0.001). The pressure/squeezing component (NPSI score) decreased by more than 2 points in 50% of patients.A linear regression showed allodynia and pressure/squeezing were responsible for the largest part of the overall alleviation of pain (p=0.01). CONCLUSIONS: Methadone could significantly improve neuropathic pain through a targeted effect of allodynia and its pressure/squeezing component.
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Dor do Câncer , Neoplasias , Neuralgia , Dor Nociceptiva , Humanos , Metadona/uso terapêutico , Estudos Prospectivos , Projetos Piloto , Dor do Câncer/tratamento farmacológico , Hiperalgesia , Analgésicos Opioides/uso terapêutico , Neuralgia/tratamento farmacológico , Neuralgia/diagnósticoRESUMO
OBJECTIVE: Integrated palliative care for populations with cancer is now highly recommended. However, numerous physicians working in cancer care are still reluctant to refer patients to specialist palliative care teams. This study explores their perceptions of palliative care and factors influencing reasons to refer to specialist palliative care. METHODS: We used a qualitative methodology based on semistructured interviews with physicians working in cancer care, in two tertiary hospitals and one comprehensive cancer centre with access to a specialist palliative care team. Forty-six physicians were invited and 18 interviews were performed until data saturation. Participants were mainly men, licensed in cancer care, 37.9 years old on average and had 13 years of professional experience. The length of interviews was on average 34 min (SD=3). Analysis was performed accordingly with the thematic analysis. RESULTS: The data analysis found four themes: symptom management as a trigger, psychosocial support, mediation provided by interventions, and the association with terminal care or death. Palliative care integrated interventions were mainly perceived as holistic approaches that offered symptom management expertise and time. They were valued for helping in consolidating decision-making from a different or external perspective, or an 'outside look'. Several barriers were identified, often due to the confusion between terminal care and palliative care. This was further highlighted by the avoidance of the words 'palliative care', which were associated with death. CONCLUSIONS: National policies for promoting palliative care seemed to have failed in switching oncologists' perception of palliative care, which they still consider as terminal care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Médicos , Assistência Terminal , Masculino , Humanos , Adulto , Feminino , Cuidados Paliativos/métodos , Assistência Terminal/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Pesquisa QualitativaRESUMO
OBJECTIVES: In 2016, a new law was adopted in France granting patients the right, under specific conditions, to continuous deep sedation until death (CDSUD). The goal of this study was to measure the frequency of requests for CDSUD from patients in palliative care. METHODS: The data collected from the medical records of patients in palliative care units (PCU) or followed by palliative care support teams (PCST) in the Rhône-Alpes area, who died after CDSUD, focused on the patient's characteristics, the drugs used (and compliance with regulatory processes). RESULTS: All 12 PCU and 12 of the 24 PCST were included. Among the 8500 patients followed, 42 (0.5%) requested CDSUD until death. The patients were: 65.7 (SD=13.7) years old, highly educated (69%), had cancer (81%), refractory symptoms (98%) and mostly psychoexistential distress (69%). The request was rejected for 2 (5%) patients and delayed for 31 (74%) patients. After a delay of a mean 8 days, 13 (31%) patients were granted CDSUD. The drug used was midazolam at 115 mg/24 hours (15-480), during a mean of 3 days. PCUs used lower dosages than PCSTs (83 vs 147), with significantly lower initial doses (39 mg vs 132 mg, p=0.01). A life-threatening condition was recorded in 13 cases (31%) and a collegial decision was taken in 25 cases (60%). CONCLUSION: This study highlights the low rate of request and the even lower rate of CDSUD in specialised palliative care. However, the sedation for psychoexistential distress and the lack of procedure records raise ethical questions.
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Sedação Profunda , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Adolescente , Cuidados Paliativos/métodos , Midazolam/uso terapêutico , França , Sedação Profunda/métodos , Hipnóticos e Sedativos/uso terapêutico , Assistência Terminal/métodos , Sedação ConscienteRESUMO
OBJECTIVES: Early palliative care leads to meaningful improvements in physical and psychosocial symptoms, as well as quality of life, in patients with advanced cancer. Patients with haematological malignancies, despite a high level of distress, continue to have less access to palliative care services. The aim of this study was to identify haematologists' perceptions of palliative care, as well as barriers to patient referral. METHODS: We used a qualitative grounded theory methodology. Twenty-four medical haematologists involved in clinical practice from two French centres in Lyon-the Lyon Sud University Hospital and the Léon Bérard Cancer Center-were included. The interview guide questions aimed to establish the clinical situations which triggered referral to palliative care and how participants perceived palliative care. RESULTS: Data saturation was reached after 14 interviews. The data analysis highlighted four themes. The aim of palliative care was clearly identified as alleviating severe suffering. Palliative care was identified as a separate specialty, and respondents expressed the need for collaboration. Early intervention was perceived as beneficial to avoid certain situations such as hospitalisation or emergency department visits at the end of life. The main barrier to palliative care referral remained the negative connotations associated with the term 'palliative', which was overwhelmingly associated with the end of life. SIGNIFICANCE OF RESULTS: Our results suggest that the principal barrier to palliative care referral is the term 'palliative care'; haematologists would prefer 'supportive care' instead.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Qualidade de Vida , Humanos , Atitude do Pessoal de Saúde , Cuidados Paliativos/métodos , Pesquisa Qualitativa , MorteRESUMO
OBJECTIVES: To evaluate the influence of art therapy in reducing palliative symptoms, on social availability and on perceptions of aesthetics in hospitalised palliative care patients. The secondary objective was to evaluate its influence on bereaved families. METHODS: A mixed-method quasi-experimental before and after study comprising a follow-up postal survey of bereaved families. All patients who were keen to have art therapy sessions were eligible. We used patient-reported outcome scales 5 min before and after the session. The Edmonton Symptom Assessment Scale has been used for pain, anxiety, well-being, fatigue and depression. Ten-point visual analogue scales were used for social availability, lack of desire and wishes, and perceptions of aesthetics based on the Beautiful-Well-Good model. A postal survey was sent to bereaved families. Correlations and data mining analyses were performed. RESULTS: In all, 24 patients were recruited for a total of 53 art therapy sessions analysed. Seven families completed the survey. Art therapy significantly reduced the assessed symptoms and overall symptom distress by 54.4% (p <0.001, d = 1.08). It also decreased the feeling of social unavailability (-59%, d = 0.67) and the lack of desire and wishes (-60%, d=0.86). The analysis of the family questionnaires indicates the positive effects regarding support, artwork and feelings during illness and grief. CONCLUSION: Our results suggest an overall improvement in the symptoms experienced and social functioning of palliative patients. Based on our findings, we propose a model for the potential mechanism of action of art therapy.
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Arteterapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos/métodos , Projetos PilotoRESUMO
BACKGROUND: Evidence from randomized controlled trials has demonstrated benefits in quality of life outcomes from early palliative care concurrent with standard oncology care in patients with advanced cancer. We hypothesized that there would be earlier referral to outpatient palliative care at a comprehensive cancer center following this evidence. MATERIALS AND METHODS: Administrative databases were reviewed for two cohorts of patients: the pre-evidence cohort was seen in outpatient palliative care between June and November 2006, and the post-evidence cohort was seen between June and November 2015. Timing of referral was categorized, according to time from referral to death, as early (>12 months), intermediate (>6 months to 12 months), and late (≤6 months from referral to death). Univariable and multivariable ordinal logistic regression analyses were used to determine demographic and medical factors associated with timing of referral. RESULTS: Late referrals decreased from 68.8% pre-evidence to 44.8% post-evidence; early referrals increased from 13.4% to 31.1% (p < .0001). The median time from palliative care referral to death increased from 3.5 to 7.0 months (p < .0001); time from diagnosis to referral was also reduced (p < .05). On multivariable regression analysis, earlier referral to palliative care was associated with post-evidence group (p < .0001), adjusting for shorter time since diagnosis (p < .0001), referral for pain and symptom management (p = .002), and patient sex (p = .04). Late referrals were reduced to <50% in the breast, gynecological, genitourinary, lung, and gastrointestinal tumor sites. CONCLUSIONS: Following robust evidence from trials supporting early palliative care for patients with advanced cancer, patients were referred substantially earlier to outpatient palliative care. IMPLICATIONS FOR PRACTICE: Following published evidence demonstrating the benefit of early referral to palliative care for patients with advanced cancer, there was a substantial increase in early referrals to outpatient palliative care at a comprehensive cancer center. The increase in early referrals occurred mainly in tumor sites that have been included in trials of early palliative care. These results indicate that oncologists' referral practices can change if positive consequences of earlier referral are demonstrated. Future research should focus on demonstrating benefits of early palliative care for tumor sites that have tended to be omitted from early palliative care trials.
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Neoplasias , Cuidados Paliativos , Humanos , Oncologia , Neoplasias/terapia , Qualidade de Vida , Encaminhamento e ConsultaRESUMO
BACKGROUND: Dedicated identified palliative care beds (IPCB) are unique to France. AIMS: This study aimed to assess their use and advantages in a medical oncology department of a private provincial hospital. FINDINGS: Of the last 100 patients who died in the medical oncology department, 57 had an IPCB. Those with an IPCB had a longer final hospital stay and significant advantages for them were access to pain evaluation by nurses and professional psychological support. Opioid use was higher, but not significantly so. There were no significant differences for the presence of close relatives, physiotherapy interventions, social workers or specific anti-cancer treatment in the last 15 days of life. CONCLUSION: This study shows some advantages for IPCB (treatment of pain, psychologist), which should be further explored. The length of the final hospital stay is controversial.
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Cuidados Paliativos na Terminalidade da Vida/psicologia , Cuidados Paliativos/psicologia , Qualidade da Assistência à Saúde , Qualidade de Vida/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: French demographic projection expects an increasing number of older, dependent patients in the next few years. A large proportion of this population lives in nursing homes and their transfer to hospitals at the end of life is an ongoing issue. OBJECTIVE: This study explored the factors influencing the transfer of patients living in nursing homes to hospital at the end of life. DESIGN: We used a mixed-methods questionnaire developed by an expert group and assessing different characteristics of the nursing homes. PARTICIPANTS: All the nursing homes in the Rhône-Alpes area (n=680) were surveyed. RESULTS: We obtained 466 (68%) answers. We found that a palliative care programme was present in 336 (72%) nursing homes. The majority had a coordinating physician 428 (82%) and a mean number of 6 nurses for 83 beds, with 83 (18%) having a night shift nurse. There was a mean number of 19 deaths per nursing home during the recorded year. The main cause of death was dementia (41%), cancer-related death (13%). Death occurred mostly in the nursing home (14 74%). Night shift nurse attendance was significantly associated with the place of death: 27 deaths occurred in nursing homes with a night shift nurse versus 12 in those without one (p<0001). CONCLUSIONS: The location of the death of frail elderly patients is a major health issue that needs to be addressed. Our results suggests that the presence of a night shift nurse decreases the number of emergency transfers and deaths in the hospital.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Enfermeiras e Enfermeiros/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos , Transferência de Pacientes/estatística & dados numéricos , Jornada de Trabalho em Turnos/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Morte , Feminino , Idoso Fragilizado/psicologia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/métodos , Hospitais/estatística & dados numéricos , Humanos , Masculino , Casas de Saúde/estatística & dados numéricos , Cuidados Paliativos/métodos , Transferência de Pacientes/métodos , Doente Terminal/psicologiaRESUMO
BACKGROUND: The palliative care unit is an emotionally challenging place where patients and their families may feel at loss. Art can allow the expression of complex feelings. We aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention. METHODS: We conducted a qualitative study based on semi-structured interviews. The study took place in a palliative care unit from 18 January 2017 to 17 May 2017. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The data from patient interviews were analysed based on an inductive approach to the verbatim accounts. RESULTS: The accounts we gathered led us to weigh the positive emotions engendered by this musical intervention against the potential difficulties encountered. The artists opened a parenthesis in the care process and brought joy and well-being to the palliative care unit. Patients also encountered difficulties during the intervention: reference to an altered general state, to loss of autonomy; a sense of the effort required, of fatigue; an adaptation period; reference to the end of life, to death; a difficulty in choosing songs. CONCLUSIONS: Although music appeared to benefit the patients, it sometimes reminded them of their altered state. The difficulties experienced by patients during the experience were also related to physical exhaustion. Additional studies are needed to determine the benefits of music for patients and their families in the palliative care unit.
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Musicoterapia/normas , Neoplasias/terapia , Cuidados Paliativos/métodos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Musicoterapia/métodos , Neoplasias/psicologia , Pesquisa Qualitativa , Qualidade de Vida/psicologiaRESUMO
Background: Cancer-related physical symptoms can decrease patients' overall quality of life and are often underdiagnosed. The Edmonton Symptom Assessment Scale (ESAS) is widely used in palliative care for cancer patients to easily assess cancer patients' symptoms. It has been often modified, adding symptoms and explanations, and translated into many languages. The European Association of Palliative Care research team developed a database, which included the modified 12-item ESAS-r as the symptom assessment tool. Objectives: The purpose of this study was to achieve the translation and cross-cultural validation in French of the 12-item ESAS-r, the ESAS12-F. Design: A French version of the ESAS-r was developed using a standardized forward and backward translation method. Patients completed the ESAS12-F and provided feedback on the translation. Setting/Subjects: Forty-five patients with advanced cancer, followed by the palliative care team from the Lyon Sud University Hospital in France, were recruited. Results: Eighty-nine percent of patients considered the ESAS easy to understand. They highlighted some concerns more about the tool itself than the translation: the time line "now," the difficulty to quantify a symptom in a numerical evaluation. Some items (sleep and appetite) needed to be reread and for some others (digestive and psychological symptoms, and well-being) to be reordered in the questionnaire. Conclusion: The ESAS12-F is well accepted and easy to use for the cancer patients. The next step is to carry out a psychometric validation of the definitive version of the ESAS12-F.
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Neoplasias/diagnóstico , Neoplasias/fisiopatologia , Cuidados Paliativos/normas , Inquéritos e Questionários/normas , Avaliação de Sintomas/métodos , Avaliação de Sintomas/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Traduções , Adulto JovemRESUMO
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables. AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility. DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods. SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care. RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items. CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
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Conjuntos de Dados como Assunto , Cuidados Paliativos , Sociedades , Adulto , Idoso , Idoso de 80 Anos ou mais , Europa (Continente) , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
AIM: The aim of the present study was to find out physicians' perceptions about the transfer of dying nursing home residents to emergency departments. METHOD: This qualitative study used semi-structured interviews, and data were analyzed using qualitative methods. Participants were medical directors of nursing homes who were informed by e-mail and included when they agreed to take part in our study. RESULTS: We interviewed 12 medical directors until data saturation. The following themes emerged: (i) related to the resident - difficulties in identifying the end of life, refractory symptoms and lack of knowledge of the resident's wishes; (ii) related to the family - denial of the end of life/fear of death, lack of confidence in the nursing home and conflict among family members; (iii) related to the nursing staff - fear of death, lack of communication, lack of training, lack of staff (especially of nurses during the nightshift) and use of temporary employees; and (iv) related to the physicians - lack of anticipation of the end of life situation, difficulty in accessing some drugs, inadequate working hours in the nursing home, conflicting medical opinions of the GP and medical director, and lack of training on palliative care issues. CONCLUSIONS: These results suggest many ways of reducing the transfer of dying residents to emergency departments through palliative care training, and communication about advance care planning. Geriatr Gerontol Int 2019; 19: 249-253.
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Atitude do Pessoal de Saúde , Serviço Hospitalar de Emergência , Casas de Saúde , Transferência de Pacientes , Assistência Terminal , Adulto , Idoso , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
PURPOSE: This research aimed to explore the perceptions and experiences of cancer patients receiving osteopathic treatment as a complementary therapy when it is used in addition to conventional treatment for cancer pain. METHODS: This qualitative study employed semi structured interviews of cancer patients in a palliative care unit in Lyon, France, who received treatment from an osteopath alongside their conventional cancer treatment. We analysed data using grounded theory and qualitative methods. RESULTS: We interviewed 16 patients. The themes identified through the analysis included a low awareness of osteopathy among the population and an accompanying high level of misconceptions. The benefits of osteopathy were described as more than just the manual treatments with participants valuing osteopathy as a holistic, meditative, and non-pharmaceutical approach. Participants also described the osteopathic treatments as assisting with a range of cancer-related health complaints such as pain, fatigue, and sleep problems. Offering osteopathic treatment at an accessible location at low or no cost were identified by participants as enablers to the continued use of osteopathy. CONCLUSIONS: The findings of this study provides preliminary data which suggests, when delivered alongside existing medical care, osteopathy may have health benefits for patients with complex conditions such as cancer.
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Neoplasias/terapia , Medicina Osteopática , Manejo da Dor , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Percepção , Adulto , Idoso , Terapia Combinada , Feminino , França/epidemiologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/psicologia , Medicina Osteopática/métodos , Medicina Osteopática/normas , Médicos Osteopáticos/psicologia , Dor/epidemiologia , Dor/psicologia , Manejo da Dor/métodos , Manejo da Dor/psicologia , Manejo da Dor/estatística & dados numéricos , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: In France, cancer has become the leading cause of death. Intensive care units (ICU) focus on survival, which may not be an appropriate setting to provide palliative care (PC) as needed by cancer patients and families. OBJECTIVE: To describe the cancer patients who died in the ICU in 2010 in a French academic medical center. DESIGN: Retrospective study Measurements: We reviewed medical records of all cancer patients who died in the ICU in 2010. The information collected from electronic medical records included patient sociodemographics and clinical characteristics, PC service referral, and the date of first contact with PC. RESULTS: Among the 536 cancer patients who died in 2010, 42 (8%) died in the ICU. The cancers were hematological (21%), gastrointestinal (21%) and head and neck (21%). One patient had a PC referral versus 45% in the total population (p < 0.001) and the referral was the same day as the death. Eight (19%) patients had chemotherapy during their last month of life and 2 during the ICU hospitalization. Seventy-four per cent of patient admissions to the ICU related directly to malignancy. The mean time between diagnosis of cancer and death was 2.3 years (standard deviation, 4.4). CONCLUSIONS: Our work highlights the need for early PC in the illness trajectory of cancer patients to prevent the transfer of dying patients to the ICU. More studies are needed to understand the decision making leading to such transfers.
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Centros Médicos Acadêmicos/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Unidades de Terapia Intensiva/estatística & dados numéricos , Neoplasias/mortalidade , Neoplasias/enfermagem , Cuidados Paliativos/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Estudos RetrospectivosRESUMO
ABSTRACTObjective:Understanding patients' decisional control preferences (DCPs) is important to improving the quality of care and the satisfaction of patients who have advanced cancer with their care. In addition to passive decisional control (i.e., the patient prefers his/her doctor or family caregiver to make a decision on their behalf) and active decisional control (i.e., the patient decides alone), shared decisional control, where patients and caregivers decide together, could be more appropriate. The primary aim of our study was to describe the decision-making process and the DCPs of patients with advanced cancer receiving palliative care in France. METHOD: We conducted a prospective survey with advanced cancer patients referred to a palliative care team in an outpatient setting. We collected information about patients' demographic and clinical characteristics using the Decision Control Preference Scale, the Satisfaction with the Decisions and Care questionnaire, and the Understanding of Illness questionnaire. RESULTS: A total of 200 patients were evaluable. The median age was 63.5 years and 53.5% female. The cancers most commonly represented were gastrointestinal and breast. A total of 72 patients (36.2%) preferred active decisional control, 52 (26.1%) preferred shared decisional control, and 75 (37.7%) preferred passive decisional control. Younger age (p = 0.003), higher education (p < 0.001), and employment status (p = 0.046) were found to be associated with active or shared DCPs. Some 82% of patients were satisfied with the decision-making process, 35% of whom expressed wishes that did not match the actual decision-making process. Only 23% of patients thought they could be cured of their illness, and 47% thought that their treatment would "get rid of " their disease. SIGNIFICANCE OF RESULTS: The decision-making processes are shared in the three models of DCPs in our cohort of French patients with advanced cancer. Further prospective studies are needed.
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Comportamento de Escolha , Tomada de Decisões , Neoplasias/psicologia , Cuidados Paliativos/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Preferência do Paciente , Satisfação do Paciente , Relações Médico-Paciente , Inquéritos e QuestionáriosRESUMO
BACKGROUND: There are limited data on illness understanding and perception of cure among advanced cancer patients around the world. The aim of the study was to determine the frequency and factors associated with inaccurate perception of curability among advanced cancer patients receiving palliative care across the globe. MATERIALS AND METHODS: Secondary analysis of a study to understand the core concepts in end-of-life care among advanced cancer patients receiving palliative care from 11 countries across the world. Advanced cancer patients were surveyed using a Patient Illness Understanding survey and Control Preference Scale. Descriptive statistics and multicovariate logistic regression analysis were performed. RESULTS: Fifty-five percent (763/1,390) of patients receiving palliative care inaccurately reported that their cancer is curable. The median age was 58, 55% were female, 59% were married or had a partner, 48% were Catholic, and 35% were college educated. Sixty-eight percent perceived that the goal of therapy was "to get rid of their cancer," and 47% perceived themselves as "seriously ill." Multicovariate logistic regression analysis shows that accurate perception of curability was associated with female gender (odds ratio [OR] 0.73, p = .027), higher education (OR 0.37, p < .0001), unemployment status (OR 0.69, p = .02), and being from France (OR 0.26, p < .0001) and South Africa (OR 0.52, p = .034); inaccurate perception of curability was associated with better Karnofsky performance status (OR 1.02 per point, p = .0005), and being from Philippines (OR 15.49, p < .0001), Jordan (OR 8.43, p < .0001), Brazil (OR 2.17, p = .0037), and India (OR 2.47, p = .039). CONCLUSION: Inaccurate perception of curability in advanced cancer patients is 55% and significantly differs by gender, education, performance status, employment status, and country of origin. Further studies are needed to develop strategies to reduce this misperception of curability in advanced cancer patients. IMPLICATIONS FOR PRACTICE: The findings of this study indicate that inaccurate perception of curability among advanced cancer patients is 55%. Inaccurate perception of curability significantly differs by gender, education, performance status, employment status, and country of origin. There is great need to facilitate improved patient-physician communication so as to improve health care outcomes and patient satisfaction.
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Atitude Frente a Saúde , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Adulto , Idoso , Comunicação , Tomada de Decisões , Feminino , Humanos , Cooperação Internacional , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Relações Médico-Paciente , Prognóstico , Assistência Terminal/psicologiaRESUMO
BACKGROUND: Understanding patients' decision control preferences is important in providing quality cancer care. Patients' decisional control preference can be either active (patients prefer to make decisions themselves), shared (collaborative between patient, their physician, and/or family), or passive (patients prefer that the decisions are made by either the physician and/or their family). AIM: To determine the frequency and predictors of passive decision control preferences among advanced cancer patients. We also determined the concordance between actual decision-making and decision control preferences and its association with patient satisfaction. DESIGN: In this cross-sectional survey of advanced cancer patients referred to palliative care across 11 countries, we evaluated sociodemographic variables, Control Preference Scale, and satisfaction with the decisions and care. RESULTS: A total of 1490 participants were evaluable. Shared, active, and passive decision control preferences were 33%, 44%, and 23%, respectively. Passive decision control preferences (odds ratio, p value) was more frequent in India (4.34, <0.001), Jordan (3.41, <0.001), and France (3.27, <0.001). Concordance between the actual decision-making and decision control preferences was highest in the United States ( k = 0.74) and lowest in Brazil (0.34). Passive decision control preference was significantly associated with (odds ratio per point, p value) better performance status (0.99/point, 0.017), higher education (0.64, 0.001), and country of origin (Brazil (0.26, <0.0001), Singapore (0.25, 0.0003), South Africa (0.32, 0.0002), and Jordan (2.33, 0.0037)). CONCLUSION: Passive decision control preferences were less common (23%) than shared and active decision control preference even among developing countries. Significant predictors of passive decision control preferences were performance status, education, and country of origin.
Assuntos
Tomada de Decisões , Neoplasias/patologia , Participação do Paciente , Preferência do Paciente , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Qualidade da Assistência à Saúde , Inquéritos e QuestionáriosRESUMO
Goal This study aims to assess the quality of the cancer pain management in Palliative care unit. METHOD: The method used was the targeted clinical audit. The audit grid was built according to the recommendations of the pilot Committee, and tested until the final version with 19 items was obtained. In this retrospective study, 60 consecutive patients were studied on 2 periods of time. The first one (T1) shows the gap between the patient's chart and the expected standard, and proposes corrective measures. The second one (T2) re-assesses, using the same items list, the efficacy of these measures. RESULTS: After the corrective measures, the patients' medical record documentation was significantly improved at T2 for: neuropathic pain assessment improved, from 3% (T1) to 67% (T2) (P<0.001), so did pain assessment during the titration, from 6.7% (T1) to 90% (T2) (P<0.001). The overdoses symptoms assessment improved from 17% at T1 to 93% at T2, (P=0.002) and breakthrough pain evaluation improved from 3% at T1 to 73% at T2, (P<0.001). The pain reassessment after the rescue doses improved from 10% at T1 to 73% at T2 (P<0.001). The other points improved but not significantly. CONCLUSION: The quality of the pain cancer management was improved during the audit, but some points (patient education and in patient medical record documentation) can be improved. We need to continue to implement the improvement measures in our unit.