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BACKGROUND: International Cancer Benchmarking Partnership Module 4 reports the first international comparison of ovarian cancer (OC) diagnosis routes and intervals (symptom onset to treatment start), which may inform previously reported variations in survival and stage. METHODS: Data were collated from 1110 newly diagnosed OC patients aged >40 surveyed between 2013 and 2015 across five countries (51-272 per jurisdiction), their primary-care physicians (PCPs) and cancer treatment specialists, supplement by treatment records or clinical databases. Diagnosis routes and time interval differences using quantile regression with reference to Denmark (largest survey response) were calculated. RESULTS: There were no significant jurisdictional differences in the proportion diagnosed with symptoms on the Goff Symptom Index (53%; P = 0.179) or National Institute for Health and Care Excellence NG12 guidelines (62%; P = 0.946). Though the main diagnosis route consistently involved primary-care presentation (63-86%; P = 0.068), onward urgent referral rates varied significantly (29-79%; P < 0.001). In most jurisdictions, diagnostic intervals were generally shorter and other intervals, in particular, treatment longer compared to Denmark. CONCLUSION: This study highlights key intervals in the diagnostic pathway where improvements could be made. It provides the opportunity to consider the systems and approaches across different jurisdictions that might allow for more timely ovarian cancer diagnosis and treatment.
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Benchmarking , Neoplasias Ovarianas , Carcinoma Epitelial do Ovário , Feminino , Humanos , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/terapia , Atenção Primária à Saúde , Encaminhamento e ConsultaRESUMO
PURPOSE: Caring affects carers' psychological and physical health, mortality, and quality of life (QoL) negatively. Lower spiritual QoL is associated with anxiety and depression, but the spiritual dimension is rarely investigated in carers. The present study aimed to explore which patient- and carer-related characteristics were associated with spiritual QoL in carers of patients with advanced cancer. METHODS: Secondary analyses were conducted using data from a prospective study investigating integration between oncology and palliative care. Adult patients with advanced cancer and their carers were included, and baseline data considering demographics, clinical characteristics, symptoms, social support, and religious meaning-making were registered. Spiritual QoL was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp-12) questionnaire. Associations to spiritual QoL were explored by bivariate and multivariate regression models. RESULTS: In total, 84 carers were included, median age was 62.5 years, 52 (62%) were female, and the average spiritual QoL score was 23.3. In bivariate analyses, higher education, social support, and lower patients' symptom burden were significantly associated with higher spiritual QoL. The multivariate regression model (n=77) had an explained variance (R2) = 0.34 and showed a significant association for social support, higher education, having children < 18 years living at home, and patient's age. CONCLUSION: The study indicates that spiritual QoL in carers were low and were negatively affected by several factors related to both carers and patients. However, there could be other important factors not yet described. Health care professionals should be aware of the known associated factors, as carers who hold these may need extra support.
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Neoplasias , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Estudos Prospectivos , Espiritualidade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The pain management index (PMI) was developed to combine information about the prescribed analgesics and the self-reported pain intensity in order to assess physicians' response to patients' pain. However, PMI has been used to explore undertreatment of cancer pain. The present study explores prevalence of negative PMI and its associations to clinical variables, including the patient-perceived wish for more attention to pain. METHODS: A single-center, cross-sectional, observational study of cancer patients was conducted. Data on demographics and clinical variables, as well as patient-perceived wish for more attention to pain, were registered. PMI was calculated. Negative PMI indicates that the analgesics prescribed might not be appropriate to the pain intensity reported by the patient, and associations to negative PMI were explored by logistic regression models. RESULTS: One hundred eighty-seven patients were included, 53% had a negative PMI score. Negative PMI scores were more frequent among patients with breast cancer (OR 4.2, 95% CI 1.3, 13.5), in a follow-up setting (OR 12.1, 95% CI 1.4, 101.4), and were inversely associated to low performance status (OR 0.14, 95% CI 0.03, 0.65). Twenty-two percent of patients with negative PMI scores reported that they wanted more focus on pain management, versus 13% among patients with a non-negative PMI score; the difference was not statistically significant. CONCLUSION: A high prevalence of negative PMI was observed, but only 1/5 of patients with a negative PMI wanted more attention to pain by their physician. Our findings challenge the use of PMI as a measure of undertreatment of cancer pain.
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Analgésicos/uso terapêutico , Dor do Câncer/tratamento farmacológico , Manejo da Dor/métodos , Medição da Dor/métodos , Algoritmos , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/tratamento farmacológico , Neoplasias/patologia , Médicos , Prevalência , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process. METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
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Cuidadores/psicologia , Pessoal de Saúde/normas , Apoio Social , Adulto , Idoso , Cuidadores/estatística & dados numéricos , Atenção à Saúde/métodos , Atenção à Saúde/normas , Educação/métodos , Feminino , Grupos Focais/métodos , Pessoal de Saúde/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Noruega , Pesquisa QualitativaRESUMO
PURPOSE: The semantics of defining cancer cachexia over the last decade has resulted in uncertainty as to the prevalence. This has further hindered the recognition and subsequent treatment of this condition. Following the consensus definition for cancer cachexia in 2011, there is now a need to establish estimates of prevalence. Therefore, the primary aim of the present study was to assess the prevalence of cachexia in an unselected cancer population. A secondary aim was to assess patient-perceived need of attention to cachexia. METHODS: A cross-sectional study in hospital patients was undertaken. Key inclusion criteria were the following: age > 18 years, cancer diagnosis, and no surgery the preceding 24 h. Data on demographics, disease, performance status, symptoms, cachexia, and patients' perceived need of attention to weight loss and nutrition were registered. RESULTS: Data were available on 386 of 426 eligible patients. Median age (IQR) was 65 years (56-72), 214 (55%) were male and 302 (78%) had a performance status of 0-1 (Eastern Cooperative Oncology Group). Prevalence of cachexia (inpatients/outpatients) was 51/22%. Prevalence was highest in patients with gastrointestinal cancer (62/42%) and lung cancer (83/36%). There was no major difference in prevalence between patients with metastatic (55/24%) and localized disease (47/19%). Twenty percent of inpatients and 15% of outpatients wanted more attention to weight loss and nutrition. Cachexia (p < 0.001), symptoms of mood disorder (p < 0.001), and male gender (p < 0.01) were independently associated with increased need of attention. CONCLUSION: Cachexia is a prevalent condition, affecting both patients with localized and metastatic cancer. Clinical attention to the condition is a sizeable unmet need.
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Caquexia/epidemiologia , Caquexia/terapia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Neoplasias/epidemiologia , Neoplasias/terapia , Idoso , Caquexia/etiologia , Estudos Transversais , Feminino , Necessidades e Demandas de Serviços de Saúde/normas , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias/complicações , Neoplasias/patologia , Estado Nutricional , Prevalência , Redução de Peso/fisiologiaRESUMO
BACKGROUND: Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat." AIM: The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support. DESIGN: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. SETTING/PARTICIPANTS: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. RESULTS: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation. CONCLUSION: Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.
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Cuidadores/psicologia , Família/psicologia , Pessoal de Saúde/psicologia , Cuidados Paliativos/psicologia , Relações Profissional-Família , Resiliência Psicológica , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
PURPOSE: Cancer pain (CP) management is challenging. In recent years, efforts were undertaken to achieve better CP management, e.g. clinical research, new treatment modalities, development of guidelines, education and focus on implementation. The aim of the present study was to compare the prevalence and characteristics of pain and breakthrough pain (BTP) between cross-sectional studies conducted in 2008 and 2014. It was hypothesized that an improvement in pain control would be observed the years in between. METHODS: Two cross-sectional studies were conducted where adult cancer patients answered questions from Brief Pain Inventory and the Alberta Breakthrough Pain Assessment Tool for cancer patients. Physicians reported socio-demographic and medical data. Regression models were applied for analysis. RESULTS: In total, 168 inpatients, 92 in 2008 and 76 in 2014, and 675 outpatients, 301 in 2008 and 374 in 2014, were included. The patient characteristics of the samples were comparable. Prevalence of CP among inpatients was 55 % in 2008 and 53 % in 2014, and among outpatients, 39 and 35 %, respectively. Inpatients reported average pain intensity (0-10 numerical rating scale, NRS) of 3.60 (standard deviation, SD 1.84) (2008) and 4.08 (SD 2.11) (2014); prevalence of BTP was 52 % (2008) and 41 % (2014). For outpatients, average pain intensity was 3.60 (SD 2.04) (2008) and 3.86 (SD 2.20) (2014); prevalence of BTP was 43 % (2008) and 37 % (2014). None of the differences were statistically significant. CONCLUSION: Unexpectedly, no improvement in pain control was observed. Efforts are still needed to improve cancer pain management.
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Dor do Câncer/diagnóstico , Dor do Câncer/terapia , Manejo da Dor/métodos , Medição da Dor/métodos , Idoso , Analgésicos Opioides/uso terapêutico , Dor Irruptiva/tratamento farmacológico , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Noruega , PrevalênciaRESUMO
OBJECTIVES: Depression is common in patients with advanced cancer; however, it is not often recognized and therefore not treated. The aims of this study were to examine the prevalence of the use of antidepressants (ADs) in an international cross-sectional study sample and to identify sociodemographic and medical variables associated with their use. METHODS: The study was conducted in patients with advanced cancer from 17 centres across eight countries. Healthcare professionals registered patient and disease-related characteristics. A dichotomous score (no/yes) was used to assess the use of ADs other than as adjuvant for pain. Self-report questionnaires from patients were used for the assessment of functioning and symptom intensity. RESULTS: Of 1051 patient records with complete data on ADs, 1048 were included (M:540/F:508, mean age 62 years, standard deviation [SD] 12). The majority were inpatients, and 85% had metastatic disease. The prevalence of AD use was 14%. Multivariate logistic regression analyses showed that younger age (odds ratio [OR] 2.46; confidence interval [CI] 1.32-4.55), female gender (OR 1.59; CI 1.09-2.33), current medication for pain (OR 2.68; CI 1.65-4.33) and presence of three or more co-morbidities (OR 4.74; CI 2.27-9.91) were associated with AD use for reasons other than pain. Disease-related variables (diagnoses, stage, Karnofsky Performance Status and survival) were not associated with the use of ADs. CONCLUSIONS: Female gender, younger age, analgesic use and multiple co-morbidities were associated with the use of ADs. However, information is still limited on which variables guide physicians in prescribing AD medication. Further longitudinal studies including details on psychiatric and medication history are needed to improve the identification of patients in need of ADs.
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Antidepressivos/uso terapêutico , Depressão/tratamento farmacológico , Prescrições de Medicamentos/estatística & dados numéricos , Neoplasias/psicologia , Adolescente , Adulto , Idoso , Estudos Transversais , Depressão/etiologia , Europa (Continente) , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Razão de Chances , Prevalência , Distribuição por Sexo , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of oncology and palliative care services would result in more time spent at home during end-of-life. METHODS: A prospective non-randomized intervention trial was conducted in two rural regions of Mid-Norway. The hospitals' oncology and palliative care outpatient clinics and surrounding communities participated. An intervention including information, education, and a standardized care pathway was developed and implemented. Adult non-curative patients with cancer were eligible. Proportion of last 90 days of life spent at home was the primary outcome. RESULTS: We included 129 patients in the intervention group (I) and 76 patients in the comparison group (C), of whom 82% of patients in I and 78% of patients in C died during follow-up. The mean proportion of last 90 days of life spent at home was 0.62 in I and 0.72 in C (p = 0.044), with 23% and 36% (p = 0.073), respectively, dying at home. A higher proportion died at home in both groups compared to pre-study level (12%). During the observation period the comparison region developed and implemented an alternative intervention to the study intervention, with the former more focused on end-of-life care. CONCLUSION: A higher proportion of patients with cancer died at home in both groups compared to pre-study level. Patients with cancer in I did not spend more time at home during end-of-life compared to those in C. The study intervention focused on the whole disease trajectory, while the alternative intervention was more directed towards end-of-life care. "Simpler" and more focused interventions on end-of-life care may be relevant for future studies on integration of palliative care into oncology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02170168.
Palliative care is an important part of cancer care to improve patients' quality of life. To be cared for and die in the preferred place are quality markers in palliative care. Patients with cancer often want to spend their final days at home. In Norway, most patients with cancer die in institutions. We hypothesized that full integration of cancer and palliative care would result in more time spent at home during end-of-life. An intervention that included information, education, and a standardized care pathway was developed and implemented in a region of Mid-Norway (the intervention region, I). A similar region served as comparison region (C). Adult patients with cancer treated with non-curative intent were eligible. Altogether, 129 patients in I and 76 patients in C were included in the study, of whom 82% in I and 78% in C died during follow-up. The mean proportion of time spent at home last 90 days of life was 0.62 in I and 0.72 in C (p = 0.044), and 22.6% and 35.6% (p = 0.073) died at home, respectively. A higher proportion died at home in both groups compared to pre-study national levels (12%). During the study period, C developed and implemented an alternative intervention to the study intervention, with the former placing more focus on end-of-life care compared to the she study intervention that focused on the whole disease trajectory. This may explain why the intervention did not result in more time spent at home during end-of-life as compared to C. "Simpler" interventions directed towards the study's primary outcome may be relevant for future studies on integration of palliative care into oncology.
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OBJECTIVE: Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder. METHOD: Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria. RESULTS: Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis. SIGNIFICANCE OF RESULTS: Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.
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Transtorno Depressivo Maior/psicologia , Neoplasias/psicologia , Cuidados Paliativos/métodos , Índice de Gravidade de Doença , Doente Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Transtorno Depressivo Maior/tratamento farmacológico , Manual Diagnóstico e Estatístico de Transtornos Mentais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , NoruegaRESUMO
PURPOSE: Patients' involvement in the development of assessment tools is recommended, and the European Palliative Care Research Collaborative has adhered to this when developing a shared language for cancer pain, an international assessment and classification system. Study objectives were to investigate how patients ranked the relevance of several previously identified pain domains, to investigate patients' perception of the pain experience and to disclose additional, relevant pain domains for cancer pain classification to those identified in the literature. METHODS: Semistructured interviews with advanced cancer patients treated with opioids were performed and analysed verbatim. Patients scored the relevance of predefined pain domains on an 11-point Numerical Rating Scale. RESULTS: Thirty-three Norwegian and Austrian patients were included (16 females and 17 males); the mean age was 63 years, and the mean Karnofsky performance score was 65. The ranking of domains was as follows etiology (mean Numerical Rating Scale score, 8.5), duration (8.0), intensity (7.4), coping (7.1), physical (5.9) and psychological functioning (5.8). Sleep was identified as a new candidate domain to include in the system. The patients emphasised consequences of having pain, for example, poor physical functioning and psychological distress. CONCLUSIONS: Previously identified pain domains were confirmed to be relevant to the patients; however, the ranking differed from the experts' ranking. Sleep disturbances may be added as a domain in a future classification system.
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Neoplasias/complicações , Dor/classificação , Idoso , Idoso de 80 Anos ou mais , Áustria , Feminino , Humanos , Avaliação de Estado de Karnofsky , Masculino , Pessoa de Meia-Idade , Neoplasias/tratamento farmacológico , Neoplasias/patologia , Noruega , Dor/etiologia , Pesquisa Qualitativa , Transtornos do Sono-Vigília/etiologiaRESUMO
INTRODUCTION: To improve quality across levels of care, we developed a standardized care pathway (SCP) integrating palliative and oncology services for hospitalized and home-dwelling palliative cancer patients in a rural region. METHODS: A multifaceted implementation strategy was directed towards a combination of target groups. The implementation was conducted on a system level, and implementation-related activities were registered prospectively. Adult patients with advanced cancer treated with non-curative intent were included and interviewed. Healthcare leaders (HCLs) and healthcare professionals (HCPs) involved in the development of the SCP or exposed to the implementation strategy were interviewed. In addition, HCLs and HCPs exposed to the implementation strategy answered standardized questionnaires. Hospital admissions were registered prospectively. RESULTS: To assess the use of the SCP, 129 cancer patients were included. Fifteen patients were interviewed about their experiences with the patient-held record (PHR). Sixty interviews were performed among 1320 HCPs exposed to the implementation strategy. Two hundred and eighty-seven HCPs reported on their training in and use of the SCP. Despite organizational cultural differences, developing an SCP integrating palliative and oncology services across levels of care was feasible. Both HCLs and HCPs reported improved quality of care in the wake of the implementation process. Two and a half years after the implementation was launched, 28% of the HCPs used the SCP and 41% had received training in its use. Patients reported limited use and benefit of the PHR. CONCLUSION: An SCP may be a usable tool for integrating palliative and oncology services across care levels in a rural region. An extensive implementation process resulted in improvements of process outcomes, yet still limited use of the SCP in clinical practice. HCLs and HCPs reported improved quality of cancer care following the implementation process. Future research should address mandatory elements for usefulness and successful implementation of SCPs for palliative cancer patients.
When a patient has incurable cancer, it is beneficial to introduce palliative care early in the disease trajectory along with anti-cancer treatment. A standardized care pathway is a method to improve quality and reduce variation in healthcare. It can promote integrated healthcare services in palliative care, e.g. by specifying action points when the patient's situation is changing. In this study, a standardized care pathway for cancer patients with palliative care needs was developed in a rural region of Norway. The pathway focused on patients' needs and symptoms and on smooth transition between levels of care. An educational program and an information strategy were developed to ensure implementation. To evaluate the implementation, all activity regarding the implementation process was registered. Cancer patients and healthcare professionals were interviewed and answered questionnaires. One thousand three hundred and twenty healthcare professionals were exposed to the implementation strategy. One hundred and twenty-nine cancer patients were followed up according to the standardized care pathway. Despite different perspectives of care, it was feasible to develop a standardized care pathway for palliative cancer patients across care settings. A paper-based patient-held record was only found to be useful by a limited number of patients. An extensive implementation process was completed and resulted in improvements regarding healthcare professionals' experience with the quality of cancer care in the region, but limited use of the care pathway in clinical practice. Further research should identify the most important elements for usefulness and successful implementation of the care pathway.
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INTRODUCTION: Early access to cancer palliative care is recommended. Descriptions of structures and processes of outpatient palliative care clinics operated within smaller hospitals are scarce. This paper presents the development and operation of a fully integrated cancer and palliative care outpatient clinic at a local hospital in a rural region of Mid-Norway offering palliative care concurrent with cancer treatment. A standardized care pathway was applied. METHODS: Palliative care is in Norway part of the public healthcare system. Official recommendations recent years point out action points to improve delivery of palliative care. An integrated cancer and palliative care outpatient clinic at a local hospital and an innovative care delivery model was developed and operated in this setting. Patients were recruited for a descriptive study of the patient population. Clinical data were collected by clinical staff and 13 symptom intensities were reported by the patients. RESULTS: Cancer and palliative care were provided by one team of healthcare professionals trained in both fields. There was a close collaboration with the other departments at the hospital, with its affiliated tertiary hospital, and with community health and care services to provide timely referral, enhanced continuity, and improved coordination of care. Eighty-eight patients were included. Mean age was 65.6 years, the most common cancer diagnoses were digestive organs (22.7%), male genital organs (20.5%) or breast (25.0%), 75.0% had metastatic or locally advanced cancer, 59.1% were treated with non-curative intention and 93.1% had Karnofsky Performance Status ≥ 80%. Median scores of individual symptoms ranged from 0 to 3 (numerical rating scale, 0-10) and 61.0% reported at least one clinically significant symptom rating (≥ 4). CONCLUSION: This delivery model of integrated outpatient cancer and palliative care is particularly relevant in rural regions allowing cancer patients access to palliative care earlier in the disease trajectory and closer to home.
Palliative care is an important part of cancer care which aims at improving cancer patients' symptom burden and quality of life and support their carers. Palliative care has traditionally been separated from cancer care. During the last decade, one has become aware of the benefits of introducing palliative care early and concurrent with cancer treatment. Most cancer patients are nowadays treated as outpatients. Availability of palliative care as a routine part of outpatient cancer clinics is therefore important. Most of the described models of early palliative care in cancer care are within large tertiary hospitals. Here it is described how early palliative care was delivered to cancer patients in an outpatient clinic in a smaller hospital in a rural region of Mid-Norway. In this integrated cancer and palliative care outpatient clinic, cancer and palliative care were provided by one team of healthcare professionals trained in both fields. The integrated outpatient clinic collaborated closely with the other hospital departments and with community health and care services. This was needed to be able to offer palliative care to all cancer patients in need of it, and closer to their home. Many of the patients attending the integrated outpatient clinic could not be cured for their cancer. They did not have many symptoms of their cancer, and they had a high functional status. This demonstrated that the integrated outpatient clinic in this local hospital was a relevant place to offer palliative care early and concurrent with cancer treatment before symptoms became severe.
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OBJECTIVE: Differences in time intervals to diagnosis and treatment between jurisdictions may contribute to previously reported differences in stage at diagnosis and survival. The International Cancer Benchmarking Partnership Module 4 reports the first international comparison of routes to diagnosis and time intervals from symptom onset until treatment start for patients with lung cancer. DESIGN: Newly diagnosed patients with lung cancer, their primary care physicians (PCPs) and cancer treatment specialists (CTSs) were surveyed in Victoria (Australia), Manitoba and Ontario (Canada), Northern Ireland, England, Scotland and Wales (UK), Denmark, Norway and Sweden. Using Wales as the reference jurisdiction, the 50th, 75th and 90th percentiles for intervals were compared using quantile regression adjusted for age, gender and comorbidity. PARTICIPANTS: Consecutive newly diagnosed patients with lung cancer, aged ≥40 years, diagnosed between October 2012 and March 2015 were identified through cancer registries. Of 10 203 eligible symptomatic patients contacted, 2631 (27.5%) responded and 2143 (21.0%) were included in the analysis. Data were also available from 1211 (56.6%) of their PCPs and 643 (37.0%) of their CTS. PRIMARY AND SECONDARY OUTCOME MEASURES: Interval lengths (days; primary), routes to diagnosis and symptoms (secondary). RESULTS: With the exception of Denmark (-49 days), in all other jurisdictions, the median adjusted total interval from symptom onset to treatment, for respondents diagnosed in 2012-2015, was similar to that of Wales (116 days). Denmark had shorter median adjusted primary care interval (-11 days) than Wales (20 days); Sweden had shorter (-20) and Manitoba longer (+40) median adjusted diagnostic intervals compared with Wales (45 days). Denmark (-13), Manitoba (-11), England (-9) and Northern Ireland (-4) had shorter median adjusted treatment intervals than Wales (43 days). The differences were greater for the 10% of patients who waited the longest. Based on overall trends, jurisdictions could be grouped into those with trends of reduced, longer and similar intervals to Wales. The proportion of patients diagnosed following presentation to the PCP ranged from 35% to 75%. CONCLUSION: There are differences between jurisdictions in interval to treatment, which are magnified in patients with lung cancer who wait the longest. The data could help jurisdictions develop more focused lung cancer policy and targeted clinical initiatives. Future analysis will explore if these differences in intervals impact on stage or survival.
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Benchmarking/estatística & dados numéricos , Neoplasias Pulmonares/diagnóstico , Atenção Primária à Saúde/organização & administração , Sistema de Registros , Adulto , Idoso , Estudos Transversais , Feminino , Saúde Global , Humanos , Neoplasias Pulmonares/epidemiologia , Masculino , Pessoa de Meia-Idade , Morbidade , Estudos Retrospectivos , Fatores de TempoRESUMO
INTRODUCTION: Different definitions of breakthrough pain (BTP) influence the observed BTP prevalence. This study examined BTP prevalence variability due to use of different cutoffs for controlled background pain, different assessment periods for background pain, and difference between worst and average pain intensity (PI). METHODS: Cancer patients from the EPCRC-CSA study who reported flare-ups of pain past 24 h were potential BTP cases. BTP prevalence was calculated for different cutoffs for background PI on numeric rating scales (NRS 0-10) for the past week, past 48 and past 24 h period. Furthermore, BTP cases were categorized based on the difference between maximum and average PI past 24 h (range, 0 to > 2 points, NRS 0-10). RESULTS: Of 696 respondents, 302 patients (43.4%) reported pain flares the past 24 h. The BTP prevalence when using a defined background PI ≤ 4 for the past week was 19.8%. This number varied for different defined cutoffs for background PI. Actual background PI and BTP prevalence also varied between the assessment periods "past week", "past 48 h", and "past 24 h" (PI 4.0, 3.6, and 3.4; BTP prevalence 19.8, 22.7, and 24.9% for background PI ≤ 4). For patients with background PI ≤ 4 past week, 105 had a difference between maximum and average PI ≥ one point and 48 had a difference > two points. CONCLUSIONS: The reported BTP prevalence is dependent on the cutoff for background PI in the BTP definition, population background PI during the assessment period, and defined cutoff for the difference between worst and average PI. FUNDING: NTNU, Norwegian University of Science and Technology.
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OBJECTIVE: International differences in colorectal cancer (CRC) survival and stage at diagnosis have been reported previously. They may be linked to differences in time intervals and routes to diagnosis. The International Cancer Benchmarking Partnership Module 4 (ICBP M4) reports the first international comparison of routes to diagnosis for patients with CRC and the time intervals from symptom onset until the start of treatment. Data came from patients in 10 jurisdictions across six countries (Canada, the UK, Norway, Sweden, Denmark and Australia). DESIGN: Patients with CRC were identified via cancer registries. Data on symptomatic and screened patients were collected; questionnaire data from patients' primary care physicians and specialists, as well as information from treatment records or databases, supplemented patient data from the questionnaires. Routes to diagnosis and the key time intervals were described, as were between-jurisdiction differences in time intervals, using quantile regression. PARTICIPANTS: A total of 14 664 eligible patients with CRC diagnosed between 2013 and 2015 were identified, of which 2866 were included in the analyses. PRIMARY AND SECONDARY OUTCOME MEASURES: Interval lengths in days (primary), reported patient symptoms (secondary). RESULTS: The main route to diagnosis for patients was symptomatic presentation and the most commonly reported symptom was 'bleeding/blood in stool'. The median intervals between jurisdictions ranged from: 21 to 49 days (patient); 0 to 12 days (primary care); 27 to 76 days (diagnostic); and 77 to 168 days (total, from first symptom to treatment start). Including screen-detected cases did not significantly alter the overall results. CONCLUSION: ICBP M4 demonstrates important differences in time intervals between 10 jurisdictions internationally. The differences may justify efforts to reduce intervals in some jurisdictions.
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Neoplasias Colorretais/diagnóstico , Diagnóstico Tardio/estatística & dados numéricos , Atenção à Saúde , Atenção Primária à Saúde/estatística & dados numéricos , Atenção Secundária à Saúde/estatística & dados numéricos , Tempo para o Tratamento/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Austrália , Canadá , Neoplasias Colorretais/patologia , Neoplasias Colorretais/terapia , Estudos Transversais , Dinamarca , Detecção Precoce de Câncer , Feminino , Humanos , Internacionalidade , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Noruega , Encaminhamento e Consulta , Sistema de Registros , Suécia , Fatores de Tempo , Reino UnidoRESUMO
With the groundbreaking work of three Milan professors-Bonadonna, Veronesi, and Ventafridda-in the 1980s as the starting point, this article aims to shed light on the potential benefits of a closer and more formal integration between oncology and palliative care. More specifically, we address why integration is needed, how to do it, and the potential benefits to the patients, families, and society. The costs for cancer care are increasing rapidly. Especially during the last year of life, some treatments are futile and expensive without proven benefit for patients in terms of prolonged survival with adequate quality of life (QoL). The latest WHO definition of palliative care supports an upstream introduction of palliative care. More recent studies indicate that such an early integration has the potential to improve the patients' QoL and reduce their symptom burden. Successful integration presupposes formal structures and explicit obligations on how and when to integrate. The Norwegian model for palliative care is presented. It covers the range of oncologic and palliative services from community health care via the local hospital to the tertiary hospital and rests on standardized care pathway as the key instrument to promote integration. Our present state of knowledge indicates that integration does not shorten life; perhaps even the opposite. Futile oncological treatment can be reduced and the QoL of patients and carers improved. We need more evidence on the potential effect upon costs, but present data indicate that integration does not increase them.
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Prestação Integrada de Cuidados de Saúde/organização & administração , Oncologia/organização & administração , Cuidados Paliativos/organização & administração , Família , Humanos , Neoplasias/fisiopatologia , Neoplasias/terapia , Qualidade de VidaRESUMO
OBJECTIVES: Depressive symptoms are common in patients with cancer and tend to increase as death approaches. The study aims were to examine the prevalence of depressive symptoms in patients with cancer in their final 24â h, and their association with other symptoms, sociodemographic and care characteristics. METHODS: A stratified sample of deaths was drawn by Statistics Netherlands. Questionnaires on patient and care characteristics were sent to the physicians (N=6860) who signed the death certificates (response rate 77.8%). Adult patients with cancer with non-sudden death were included (n=1363). Symptoms during the final 24â h of life were assessed on a 1-5 scale and categorised as 1=no, 2-3=mild/moderate and 4-5=severe/very severe. RESULTS: Depressive symptoms were registered in 37.6% of the patients. Patients aged 80â years or more had a reduced risk of having mild/moderate depressive symptoms compared with those aged 17-65â years (OR 0.70; 95% CI 0.50 to 0.99). Elderly care physicians were more likely to assess patients with severe/very severe depressive symptoms than patients with no depressive symptoms (OR 4.18; 95% CI 1.48 to 11.76). Involvement of pain specialists/palliative care consultants and psychiatrists/psychologists was associated with more ratings of severe/very severe depressive symptoms. Fatigue and confusion were significantly associated with mild/moderate depressive symptoms and anxiety with severe/very severe symptoms. CONCLUSIONS: More than one-third of the patients were categorised with depressive symptoms during the last 24â h of life. We recommend greater awareness of depression earlier in the disease trajectory to improve care.
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Depressão/epidemiologia , Neoplasias/epidemiologia , Doente Terminal/psicologia , Idoso de 80 Anos ou mais , Depressão/mortalidade , Feminino , Humanos , Masculino , Neoplasias/mortalidade , Estudos RetrospectivosRESUMO
CONTEXT: Cancer pain can appear with spikes of higher intensity. Breakthrough cancer pain (BTCP) is the most common term for the transient exacerbations of pain, but the ability of the nomenclature to capture relevant pain variations and give treatment guidance is questionable. OBJECTIVES: To reach consensus on definitions, terminology, and subclassification of transient cancer pain exacerbations. METHODS: The most frequent authors on BTCP literature were identified using the same search strategy as in a systematic review and invited to participate in a two-round Delphi survey. Topics with a low degree of consensus on BTCP classification were refined into 20 statements. The participants rated their degree of agreement with the statements on a numeric rating scale (0-10). Consensus was defined as a median numeric rating scale score of ≥7 and an interquartile range of ≤3. RESULTS: Fifty-two authors had published three or more articles on BTCP over the past 10 years. Twenty-seven responded in the first round and 24 in the second round. Consensus was reached for 13 of 20 statements. Transient cancer pain exacerbations can occur without background pain, when background pain is uncontrolled, and regardless of opioid treatment. There exist cancer pain exacerbations other than BTCP, and the phenomenon could be named "episodic pain." Patient-reported treatment satisfaction is important with respect to assessment. Subclassification according to pain pathophysiology can provide treatment guidance. CONCLUSION: Significant transient cancer pain exacerbations include more than just BTCP. Patient input and pain classification are important factors for tailoring treatment.
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Dor Irruptiva/classificação , Dor do Câncer/classificação , Terminologia como Assunto , Técnica Delphi , Europa (Continente) , Humanos , Cuidados Paliativos , Sociedades MédicasRESUMO
UNLABELLED: The aim of the present study is to compare physician clinical assessment with patient-rated evaluations in the classification of cancer pain patients into groups with different pain levels, according to the presence of incident/breakthrough pain, neuropathic pain, and psychological distress. Average pain in the previous 24 hours was used as the dependent variable in multivariate linear regression models, and incident/breakthrough pain, neuropathic pain, and psychological distress were tested as regressors; in the assessment of regressors, physicians used the Edmonton Classification System for Cancer Pain, whereas patients used structured self-assessment questionnaires. The amount of variability in pain intensity scores explained by the 2 sets of regressors, physician and patient rated, was compared using R(2) values. When tested in 2 separate models, patient ratings explained 20.3% of variability (95% confidence interval [CI] = 15.2-25.3%), whereas physician ratings explained 6.1% (95% CI = 2.2-9.8%). The higher discriminative capability of patient ratings was still maintained when both regressor sets were introduced in the same model, with R(2) indices of 17.6% (95% CI = 13.0-22.2%) for patient ratings vs 3.4% (95% CI = .9-5.9%) for physician ratings. Patients' self-assessment of subjective symptoms should be integrated in future cancer pain classification systems. PERSPECTIVE: Our results indicate that patient-structured assessment of incident/breakthrough pain, neuropathic pain, and psychological distress significantly contributes to the discrimination of cancer patients with different pain levels. The integration of patient self-assessment tools with more objective clinician assessments can improve the classification of cancer pain.