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1.
Neuroendocrinology ; 113(3): 281-288, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36049462

RESUMEN

Hormonal crises are a rare but increasingly recognized phenomenon following peptide receptor radionuclide therapy (PRRT) in patients with neuroendocrine neoplasms (NENs). Due to the paucity of published studies, approaches to the identification, prevention, and management of risk factors are inconsistent between different institutions. This consensus statement aimed to provide guidance for NEN patients undergoing PRRT. Our statement has been created on the basis of clinical demand and concerns regarding the precipitation of hormonal crises. A formal literature review was conducted to identify available studies. A total of 19 Australian and New Zealand experts in the fields of medical oncology, nuclear medicine, anaesthetics, and endocrinology collaborated on this consensus statement. The main focus is on carcinoid crises. Other hormonal crises seen in patients with functional pancreatic NENs are addressed briefly. These recommendations are relevant to PRRT centres internationally and should be tailored to local experience and available resources.


Asunto(s)
Tumores Neuroendocrinos , Neoplasias Pancreáticas , Humanos , Australia , Tumores Neuroendocrinos/tratamiento farmacológico , Neoplasias Pancreáticas/tratamiento farmacológico , Radioisótopos/uso terapéutico , Receptores de Péptidos
2.
J Nucl Cardiol ; 30(6): 2676-2691, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37587328

RESUMEN

BACKGROUND: Cardiac metastases from neuroendocrine neoplasms (NENs) are being detected with increasing frequency, although the optimal imaging strategy remains unclear. We performed a single-center retrospective study to explore the role of somatostatin receptor positron emission tomography/computed tomography (SSTR PET/CT) and cardiac magnetic resonance imaging (CMR) in NEN cardiac metastases, determine the degree of concordance between the findings of these imaging modalities, and examine the advantages and disadvantages of each imaging technique. A secondary aim was to determine if cardiac metastases were associated with adverse cardiac events during peptide receptor radionuclide therapy (PRRT). METHODS AND RESULTS: 19 patients with NEN cardiac metastases were identified. A retrospective review of electronic medical records was performed, and if available SSTR PET/CT and CMR were blindly re-reviewed by imaging specialists, documenting the number and location of cardiac metastases. All 19 patients had SSTR PET/CT, and 10/19 patients had CMR. SSTR PET/CT identified more metastases than CMR. When identified on CMR, metastases were more accurately localized. 12/19 patients received PRRT, with no cardiac adverse effects. CONCLUSION: SSTR PET/CT and CMR are complementary investigations in the imaging of NEN cardiac metastases. SSTR PET/CT appears more sensitive for lesion detection, and CMR offers better lesion characterization. Both investigations present useful information for the planning of treatment including PRRT, which was administered safely.


Asunto(s)
Neoplasias Cardíacas , Tumores Neuroendocrinos , Neoplasias del Timo , Humanos , Tomografía Computarizada por Tomografía de Emisión de Positrones/métodos , Receptores de Somatostatina , Estudios Retrospectivos , Tumores Neuroendocrinos/diagnóstico por imagen , Imagen por Resonancia Magnética , Neoplasias Cardíacas/diagnóstico por imagen , Melanoma Cutáneo Maligno
3.
Int J Equity Health ; 22(1): 175, 2023 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-37658395

RESUMEN

BACKGROUND: There is strong international evidence documenting inequities in cancer care for migrant populations. In Australia, there is limited information regarding cancer equity for Culturally and Linguistically Diverse (CALD) migrant populations, defined in this study as migrants born in a country or region where English is not the primary language. This study sought to quantify and compare cancer treatment, survivorship, and service utilisation measures between CALD migrant and Australian born cancer populations. METHODS: A retrospective cohort study was conducted utilising electronic medical records at a major, tertiary hospital. Inpatient and outpatient encounters were assessed for all individuals diagnosed with a solid tumour malignancy in the year 2016 and followed for a total of five years. Individuals were screened for inclusion in the CALD migrant or Australian born cohort. Bivariate analysis and multivariate logistic regression were used to compare treatment, survivorship, and service utilisation measures. Sociodemographic measures included age, sex, post code, employment, region of birth and marital status. RESULTS: A total of 523 individuals were included, with 117 (22%) in the CALD migrant cohort and 406 (78%) in the Australian-born cohort. CALD migrants displayed a statistically significant difference in time from diagnosis to commencement of first treatment for radiation (P = 0.03) and surgery (P = 0.02) and had 16.6 times higher odds of declining recommended chemotherapy than those born in Australia (P = 0.00). Survivorship indicators favoured CALD migrants in mean time from diagnosis to death, however their odds of experiencing disease progression during the study period were 1.6 times higher than those born in Australia (P = 0.04). Service utilisation measures displayed that CALD migrants exhibited higher numbers of unplanned admissions (P = < 0.00), longer cumulative length of those admissions (P = < 0.00) and higher failure to attend scheduled appointments (P = < 0.00). CONCLUSION: This novel study has produced valuable findings in the areas of treatment, survivorship, and service utilisation for a neglected population in cancer research. The differences identified suggest potential issues of institutional inaccessibility. Future research is needed to examine the clinical impacts of these health differences in the field of cancer care, including the social and institutional determinants of influence.


Asunto(s)
Neoplasias , Migrantes , Humanos , Queensland , Australia , Supervivencia , Estudios Retrospectivos , Neoplasias/terapia
4.
Support Care Cancer ; 31(10): 577, 2023 Sep 15.
Artículo en Inglés | MEDLINE | ID: mdl-37712997

RESUMEN

OBJECTIVES: To identify changes in the healthcare preferences, patient experiences, and quality of life of patients with NETs at 6-month follow-up, informing the design of supportive care services. METHODS: This study presents 6-month follow-up data of a mixed-methods multi-site study. Demographic, clinical, and patient-reported outcome questionnaire data was collected. RESULTS: High percentages of suboptimal experiences of care were reported. Patients reported less positive experiences with being involved in decisions about their care and treatment; their family or someone close to them having the opportunity to talk to their cancer doctor, or having their family or someone close to them receive all the information they need to help care for them at home. Patients also reported negative experiences for on the information about their cancer accessible online and the usefulness of the information they accessed. Differences between baseline and follow-up scores were mostly not significant apart from anxiety and sleep disturbance scales, CONCLUSIONS: Patients with NETs report difficulties in accessing and understanding written information that is persistent over time. PRACTICE IMPLICATIONS: Outcomes will inform the design and development of an informational resource aimed at facilitating improved understanding for patients with NETs.


Asunto(s)
Tumores Neuroendocrinos , Humanos , Calidad de Vida , Ansiedad/etiología , Trastornos de Ansiedad , Medición de Resultados Informados por el Paciente
5.
J Hum Nutr Diet ; 36(3): 612-621, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36146921

RESUMEN

BACKGROUND: There is evidence linking diet to the risk of developing cancer and preventing recurrence, but the therapeutic value of food in treating cancer remains unclear. Therefore, guidelines for well-nourished patients with cancer are based on general healthy eating recommendations. This study aims to describe patients' knowledge, attitudes, and beliefs towards the role of diet and cancer. METHODS: A cross-sectional survey was undertaken between July 2016 and January 2017. Patients being reviewed by Medical Oncology at a tertiary cancer service were invited to complete a questionnaire. RESULTS: One hundred and nine patients participated, with 61% receiving curative treatment. Median body mass index was 26.9 kg/m2 . A high frequency reported weight change (72%) and dietary modifications (reduction in overall intake; 62%). Patients were more likely to modify their diet if they had experienced weight change [odds ratio (OR): 3.59, 95% confidence interval (CI): 1.49-8.63], had malignancy-related anorexia (OR: 2.38, 95% CI: 1.06-5.32), strongly believed that diet contributed to their cancer (OR: 9.09, 95% CI: 2.55-32.44) or felt that nutrition played an important role in treatment (OR: 4.50, 95% CI: 1.95-10.40). Dietary information was largely sought from their hospital dietitian (51%), the Internet (39%), or treating oncologist (35%), of whom 47% and 57% found the information from their hospital dietitian and oncologist helpful, respectively. CONCLUSIONS: Our survey confirms patients place great importance on diet as part of their cancer management. Evidence-based dietetic services currently focus on managing malnutrition during treatment, but this study has identified hospital clinicians are not necessarily providing dietary information to meet patient expectations and thus a potential gap in patient-centred nutrition services for this patient population.


Asunto(s)
Conocimientos, Actitudes y Práctica en Salud , Neoplasias , Humanos , Estudios Transversales , Australia , Dieta , Neoplasias/complicaciones , Neoplasias/terapia
6.
Support Care Cancer ; 31(1): 46, 2022 Dec 16.
Artículo en Inglés | MEDLINE | ID: mdl-36525094

RESUMEN

PURPOSE: To develop and establish expert consensus on essential elements of optimal dietary and exercise referral practices for cancer survivors. METHODS: A four-round modified, Delphi method (face-to-face and electronic). In round 1, initial statements were drafted based on Cancer Australia's Principles of Cancer Survivorship and input from key stakeholders through a cancer preconference workshop. In round 2, the initial statements were distributed to a panel (round 1 participants) to establish consensus by rating the importance of each statement using a five-point Likert scale. Statements that required significant changes in wording were redistributed to panel members in round 3 for voting. Round 4 was for consumers, requiring them to rate their level of agreement of final statements. RESULTS: In total, 82 stakeholders participated in round 1. Response rates for survey rounds 2 and 3 were 59% (n = 54) and 39% (n = 36). Panel members included nurses (22%), dietitians (19%), exercise professionals (16%), medical practitioners (8%), and consumers (4%). The mean "importance" rating for all essential elements was 4.28 or higher (i.e., fairly important, or very important). Round 4's consumer-only engagement received responses from 58 consumers. Overall, 24 elements reached consensus following some revised wording, including the development of three new statements based on panel feedback. CONCLUSION: Our developed essential elements of optimal dietary and exercise referral practices can help provide guidance to medical and nursing health professionals relevant to dietary and exercise referral practices. Future research should conduct an implementation intervention and evaluation of these essential elements to optimise dietary and exercise care in cancer survivors.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Consenso , Técnica Delphi , Personal de Salud , Derivación y Consulta , Neoplasias/terapia
7.
Qual Life Res ; 30(11): 3063-3071, 2021 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-33089474

RESUMEN

PURPOSE: We evaluated the utility of the implementation science framework "Integrated Promoting Action on Research Implementation in Health Services" (i-PARIHS) for introducing patient-reported outcome measures (PROMs) into a medical oncology outpatient department. The i-PARIHS framework identifies four core constructs for implementation, including Facilitation, Innovation, Context and Recipients. METHODS: A pilot study used the i-PARIHS framework to identify PROM implementation barriers and enablers to inform facilitation support strategies, such as training clinicians and staff, workflow support, technical support and audit and feedback. Pre- and post-implementation surveys were completed by 83 and 72 staff, respectively, (nurses, doctors and allied health), to assess perceived knowledge, enablers, barriers and utility of PROMs; and acceptability of the PROM intervention was also assessed post-implementation. RESULTS: Important barriers included time constraints and previous experiences with technology. Enablers included good leadership support and a culture of learning. Facilitation strategies were used to overcome barriers identified in the i-PARIHS core domains. Compared to before the intervention, staff surveys showed improvement in perceived usefulness, perceived understanding and interpretation skills for PROMs. Staff perceptions about lack of time to use PROMs during visits remained a major perceived barrier post-implementation. CONCLUSION: The i-PARIHS framework was useful for guiding the implementation of PROMs in routine oncology care. The four core i-PARIHS constructs (Facilitation, Innovation, Context and Recipients) identified factors that directly impacted implementation, with Facilitation having a particularly important role to overcome these barriers. Oncology clinics and health systems considering implementing PROMs should consider having a dedicated Facilitator available during PROM implementation.


Asunto(s)
Ciencia de la Implementación , Pacientes Ambulatorios , Servicios de Salud , Humanos , Oncología Médica , Medición de Resultados Informados por el Paciente , Proyectos Piloto , Calidad de Vida/psicología
8.
Nutr J ; 20(1): 2, 2021 01 02.
Artículo en Inglés | MEDLINE | ID: mdl-33388075

RESUMEN

BACKGROUND: Malnutrition in advanced cancer patients is common but limited and inconclusive data exists on the effectiveness of nutrition interventions. Feasibility and acceptability of a novel family-based nutritional psychosocial intervention were established recently. The aims of this present study were to assess the feasibility of undertaking a randomised controlled trial of the latter intervention, to pilot test outcome measures and to explore preliminary outcomes. METHODS: Pilot randomised controlled trial recruiting advanced cancer patients and family caregivers in Australia and Hong Kong. Participants were randomised and assigned to one of two groups, either a family-centered nutritional intervention or the control group receiving usual care only. The intervention provided 2-3 h of direct dietitian contact time with patients and family members over a 4-6-week period. During the intervention, issues with nutrition impact symptoms and food or eating-related psychosocial concerns were addressed through nutrition counselling, with a focus on improving nutrition-related communication between the dyads and setting nutritional goals. Feasibility assessment included recruitment, consent rate, retention rate, and acceptability of assessment tools. Validated nutritional and quality of life self-reported measures were used to collect patient and caregiver outcome data, including the 3-day food diary, the Patient-Generated Subjective Global Assessment Short Form, the Functional Assessment Anorexia/Cachexia scale, Eating-related Distress or Enjoyment, and measures of self-efficacy, carers' distress, anxiety and depression. RESULTS: Seventy-four patients and 54 family caregivers participated in the study. Recruitment was challenging, and for every patient agreeing to participate, 14-31 patients had to be screened. The consent rate was 44% in patients and 55% in caregivers. Only half the participants completed the trial's final assessment. The data showed promise for some patient outcomes in the intervention group, particularly with improvements in eating-related distress (p = 0.046 in the Australian data; p = 0.07 in the Hong Kong data), eating-related enjoyment (p = 0.024, Hong Kong data) and quality of life (p = 0.045, Australian data). Energy and protein intake also increased in a clinically meaningful way. Caregiver data on eating-related distress, anxiety, depression and caregiving burden, however, showed little or no change. CONCLUSIONS: Despite challenges with participant recruitment, the intervention demonstrates good potential to have positive effects on patients' nutritional status and eating-related distress. The results of this trial warrant a larger and fully-powered trial to ascertain the effectiveness of this intervention. TRIAL REGISTRATION: The trial was registered with the Australian & New Zealand Clinical Trials Registry, registration number ACTRN12618001352291 .


Asunto(s)
Neoplasias , Estado Nutricional , Australia , Cuidadores , Humanos , Neoplasias/terapia , Proyectos Piloto , Calidad de Vida
9.
Global Health ; 17(1): 87, 2021 07 28.
Artículo en Inglés | MEDLINE | ID: mdl-34321015

RESUMEN

International evidence suggests migrants experience inequitable access, outcomes and treatment quality across the cancer care continuum. There is currently limited research assessing equity across the cancer care continuum for culturally and linguistically diverse migrants living in Australia. A detailed protocol and search strategy were developed and used to identify all relevant literature, utilising the Joanna Briggs Institute Reviewer's Manual. Systematic searching was conducted via multiple databases and identified studies were screened against pre-identified inclusion and exclusion criteria. 71 studies met the inclusion criteria for analysis. Most studies examined cancer detection via screening. Very few studies examined cancer prevention, diagnosis, treatment or palliative care. Most studies focused on patient-sided barriers to care and there was a paucity of information regarding institutional barriers to health. Cancer-related outcomes were seldom examined, and most studies were qualitative or behavioral analysis. Results highlighted significant communication issues spanning the cancer care continuum and a context of inadequate support for both patients and clinicians. There is a demonstrable need to examine equity in access and outcomes for culturally and linguistically diverse cancer populations. This requires the identification of cancer-related disparities and an examination of institutional barriers to care. Through addressing this dearth of information, future research and health policy can support the operationalisation of health equity.


Asunto(s)
Neoplasias , Migrantes , Australia , Continuidad de la Atención al Paciente , Atención a la Salud , Humanos , Neoplasias/terapia , Grupos de Población
10.
Pancreatology ; 20(7): 1458-1464, 2020 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-32868184

RESUMEN

BACKGROUND: Serum CA19-9 concentration may be useful in triaging patients with pancreatic cancer for more intensive staging investigations. Our aim was to identify the CA19-9 cut-point with the greatest accuracy for detecting unresectable features not identified by CT scan, and to examine the performance of this and other cut-points in predicting the outcome of staging laparoscopy (SL). METHODS: Patients with pancreatic cancer were drawn from two state-wide cancer registries between 2009 and 2011. We used classification and regression tree (CART) analysis to identify the CA19-9 cut-point which best predicted the presence of imaging-occult unresectable features, and compared its performance with that of a number of alternative cut-points. We then used logistic regression to test the association between CA19-9 concentration and detection of unresectable features in patients who underwent SL. RESULTS: From the CART analysis, the optimal CA19-9 cut-point was 440 U/mL. CA19-9 ≥ 150 U/mL had a similar Youden Index, but greater sensitivity (69% versus 47%). This remained true for those who had obstructive jaundice at the time of CA19-9 sampling. CA19-9 concentration greater than or equal to 110 U/mL, 150 U/mL and 200 U/mL was associated with significantly greater odds of unresectable features being detected during SL. CONCLUSION: Elevated serum CA19-9 concentration is a valid marker for CT-occult unresectable features; the most clinically appropriate cut-point appears to be ≥ 150 U/mL irrespective of the presence of jaundice. Clinical trials which evaluate the value of CA19-9 in the staging algorithm for pancreatic cancer are needed before it is routinely used in clinical practice.


Asunto(s)
Antígeno CA-19-9/análisis , Neoplasias Pancreáticas/diagnóstico , Neoplasias Pancreáticas/cirugía , Factores de Edad , Anciano , Anciano de 80 o más Años , Australia , Comorbilidad , Femenino , Humanos , Laparoscopía , Masculino , Persona de Mediana Edad , Estadificación de Neoplasias , Neoplasias Pancreáticas/diagnóstico por imagen , Valor Predictivo de las Pruebas , Sistema de Registros , Sensibilidad y Especificidad , Factores Sexuales , Tomografía Computarizada por Rayos X , Resultado del Tratamiento , Triaje
11.
Support Care Cancer ; 28(1): 229-238, 2020 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-31020437

RESUMEN

PURPOSE: A cancer diagnosis is an emotive and challenging time for patients. This study aimed to systematically explore patients' accounts of experiencing their cancer diagnosis. The purpose of this article is to offer a typology of patient responses to receiving a cancer diagnosis as a means through which to affirm the range of patients' experiences and to guide clinicians' practice. METHODS: Qualitative semi-structured interviews were conducted between 2015 and 2017 with 80 patients living with cancer: 34 females and 46 males, aged between 31 and 85, diagnosed with a range of cancer types, stages and treatment trajectories, from two metropolitan hospitals on the east coast of Australia. Interview data were analysed thematically, using the framework approach. RESULTS: A typology of responses to the cancer diagnosis was derived from the analysis and included (1) the incongruent diagnosis, unexpected because it did not 'fit' with the patient's 'healthy' identity; (2) the incidental diagnosis, arising from seemingly unrelated or minor medical investigations; (3) the validating diagnosis, as explanation and confirmation of previously unexplained symptoms, pain or feelings; (4) the life context diagnosis, where the cancer diagnosis was positioned relative to other challenging life events, or as relatively inconsequential compared with the hardship of others. CONCLUSIONS: A diagnosis of cancer is not always (or only) experienced by patients with shock and despair. Diagnosis is perceived and experienced in diverse ways, shaped by broader social or life contexts, and with important implications for the clinical encounter and communication from an oncology perspective.


Asunto(s)
Emociones , Neoplasias/diagnóstico , Neoplasias/psicología , Adulto , Anciano , Anciano de 80 o más Años , Actitud Frente a la Salud , Australia/epidemiología , Comunicación , Femenino , Estado de Salud , Humanos , Entrevistas como Asunto/métodos , Masculino , Oncología Médica , Persona de Mediana Edad , Neoplasias/epidemiología , Relaciones Médico-Paciente , Investigación Cualitativa , Supervivencia
12.
Qual Health Res ; 30(4): 491-503, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-31216932

RESUMEN

Men are increasingly participating, and acknowledging their roles, as informal carers. Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring. Our analysis highlights a series of tensions, including the following: the meanings and practicalities of care provision including notions of reciprocity, duty, autonomy, and interdependence; the discomforts of dependency and vulnerability; and the complicated moralities that inflect "caring well." Given the shifting dynamics around informal care, we argue for increased attention to the affective tensions that arise at the nexus of moralities and masculinities in informal caring relations, especially as they are articulated in the context of illness, affliction, and dependency.


Asunto(s)
Cuidadores/psicología , Masculinidad , Hombres/psicología , Neoplasias/terapia , Atención al Paciente/psicología , Autonomía Personal , Adulto , Anciano , Anciano de 80 o más Años , Australia , Teoría Fundamentada , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa
13.
Qual Health Res ; 30(11): 1619-1631, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32564713

RESUMEN

An extensive body of scholarship focuses on cultural diversity in health care, and this has resulted in a plethora of strategies to "manage" cultural difference. This work has often been patient-oriented (i.e., focused on the differences of the person being cared for), rather than relational in character. In this study, we aimed to explore how the difference was relational and coproduced in the accounts of cancer care professionals and patients with cancer who were from migrant backgrounds. Drawing on eight focus groups with 57 cancer care professionals and one-on-one interviews with 43 cancer patients from migrant backgrounds, we explore social relations, including intrusion and feelings of discomfort, moral logics of rights and obligation, and the practice of defaulting to difference. We argue, on the basis of these accounts, for the importance of approaching difference as relational and that this could lead to a more reflexive means for overcoming "differences" in therapeutic settings.


Asunto(s)
Neoplasias , Migrantes , Diversidad Cultural , Grupos Focales , Humanos , Principios Morales , Neoplasias/terapia , Investigación Cualitativa
14.
Eur J Cancer Care (Engl) ; 28(6): e13167, 2019 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-31603590

RESUMEN

INTRODUCTION: The aim of this study was to identify strategies to implement patient-reported outcome measures (PROMs) into routine oncology outpatients' clinical care. METHODS: Qualitative focus groups were conducted with staff from multiple disciplines using a semistructured interview guide, with supporting data collected in field notes. Data were analysed using a Directed Content Analysis guided by an implementation science framework. The synthesis of the extracted data aimed to identify key requirements which correspond to intrinsic enablers and barriers for implementation. RESULTS: 52 staff members from the multi-disciplinary team participated. Data extracted showed five key themes and three key requirements regarding implementation of PROMs. Staff would consider using PROMs if there was strong research evidence that demonstrates benefits for patient outcomes, if PROM data was relevant to current clinical practice, and if applied appropriately in the specific setting. These findings add pragmatic detail and new knowledge to the current evidence on pathways to PROM implementation. This data can be used to inform implementation of PROMs into health services. CONCLUSION: Staff have valuable tacit knowledge of what works in practice that offers a unique opportunity to increase successful implementation of a PROM intervention for patient symptom reporting.


Asunto(s)
Neoplasias/terapia , Grupo de Atención al Paciente , Medición de Resultados Informados por el Paciente , Atención Ambulatoria , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Humanos , Investigación Cualitativa
15.
BMC Cancer ; 18(1): 240, 2018 03 01.
Artículo en Inglés | MEDLINE | ID: mdl-29495960

RESUMEN

It has been highlighted that the original manuscript [1] contains a typesetting error in the surname of Jesson Butcon. This was incorrectly captured as Jessica Butcon in the original manuscript which has since been updated.

16.
Support Care Cancer ; 26(9): 3153-3161, 2018 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-29594486

RESUMEN

BACKGROUND: Neuroendocrine tumours (NETs) are rare, and when metastatic NETs are incurable, the tumours are frequently slowly growing. Patients may be confronted with disease-specific problems and distinct issues when accessing health-care. We aimed to assess perceptions of care coordination, identify unmet needs, and examine if these varied by whether patients received specialist oncology care in a single hospital or shared between that and another hospital. We also quantified anxiety, depression, and NET-related physical symptoms. METHODS: We conducted a cross-sectional survey of 111 NET patients managed at Royal Brisbane and Women's Hospital. Validated surveys measured care coordination (CCCQ), unmet needs (SCNS-SF34), anxiety and depression (HADS), and quality of life and symptoms (FACT). RESULTS: Participants were between 2 months and 27 years after diagnosis. The worst-ranked items on the CCCQ related to health professionals having a full case history, providing information about financial entitlements and asking about how well patients and their families were coping. People with shared care were significantly less satisfied with some aspects of care. One in three participants reported a moderate-to-high unmet need for help with fatigue and one in four with psychological concerns about their cancer spreading, uncertainty about their future, and about the worries of those close to them. Overall, 30% of participants had anxiety and 20% had depression and they had significantly lower physical and emotional well-being compared to the general population. CONCLUSIONS: NETs are experienced as a chronic illness. In addition to ongoing psychological and physical symptom management, improvements to case history documentation and discussions about coping and finance are recommended.


Asunto(s)
Tumores Neuroendocrinos/psicología , Medición de Resultados Informados por el Paciente , Calidad de Vida/psicología , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Percepción , Apoyo Social
17.
Palliat Support Care ; 16(5): 534-543, 2018 10.
Artículo en Inglés | MEDLINE | ID: mdl-28669376

RESUMEN

OBJECTIVE: People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival. METHODS: People with pancreatic cancer who were 1-8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected. RESULTS: In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group. SIGNIFICANCE OF RESULTS: Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.


Asunto(s)
Continuidad de la Atención al Paciente/normas , Neoplasias Pancreáticas/psicología , Percepción , Calidad de la Atención de Salud/normas , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias Pancreáticas/terapia , Calidad de Vida/psicología , Queensland , Encuestas y Cuestionarios
18.
BMC Cancer ; 17(1): 715, 2017 Nov 06.
Artículo en Inglés | MEDLINE | ID: mdl-29110686

RESUMEN

BACKGROUND: Most efforts to advance cancer survivorship care have occurred in Western countries. There has been limited research towards gaining a comprehensive understanding of survivorship care provision in the Asia-Pacific region. This study aimed to establish the perceptions of responsibility, confidence, and frequency of survivorship care practices of oncology practitioners and examine their perspectives on factors that impede quality survivorship care. METHODS: A cross-sectional survey of hospital-based oncology practitioners in 10 Asia-Pacific countries was undertaken between May 2015-October 2016. The participating countries included Australia, Hong Kong, China, Japan, South Korea, Thailand, Singapore, India, Myanmar, and The Philippines. The survey was administered using paper-based or online questionnaires via specialist cancer care settings, educational meetings, and professional organisations. RESULTS: In total, 1501 oncology practitioners participated in the study. When comparing the subscales of responsibility perception, frequency and confidence, Australian practitioners had significantly higher ratings than practitioners in Hong Kong, Japan, Thailand, and Singapore (all p < 0.05). Surprisingly, practitioners working in Low- and Mid- Income Countries (LMICs) had higher levels of responsibility perception, confidence and frequencies of delivering survivorship care than those working in High-Income Countries (HICs) (p < 0.001), except for the responsibility perception of care coordination where no difference in scores was observed (p = 0.83). Physicians were more confident in delivering most of the survivorship care interventions compared to nurses and allied-health professionals. Perceived barriers to survivorship care were similar across the HICs and LMICs, with the most highly rated items for all practitioners being lack of time, dedicated educational resources for patients and family members, and evidence-based practice guidelines informing survivorship care. CONCLUSIONS: Different survivorship practices have been observed between HICs and LMICs, Australia and other countries and between the professional disciplines. Future service planning and research efforts should take these findings into account and overcome barriers identified in this study.


Asunto(s)
Pautas de la Práctica en Medicina , Supervivencia , Australia , Supervivientes de Cáncer , China , Estudios Transversales , Femenino , Hong Kong , Humanos , India , Japón , Masculino , Mianmar , Oncólogos , Grupo de Atención al Paciente , Filipinas , República de Corea , Singapur , Encuestas y Cuestionarios , Tailandia
19.
Pancreatology ; 17(2): 321-327, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28153446

RESUMEN

BACKGROUND: People with pancreatic cancer have high levels of anxiety and depression and reduced quality of life (QoL), but few studies have assessed these outcomes for patient-carer dyads. We therefore investigated these issues in an Australian population-based study. METHODS: Patients with pancreatic cancer (n = 136) and many of their carers (n = 84) completed the Hospital Anxiety and Depression Scale (HADS) and Functional Assessment of Cancer Therapy QoL questionnaire at a median of three months after diagnosis. Overall QoL and well-being subscales (physical, social, emotional, functional) were compared with general population norms. Intraclass correlation coefficients were used to compare anxiety, depression and QoL scores of patients and their respective carers. RESULTS: Fifteen percent of patients and 39% of carers had HADS scores indicative of anxiety and 15% of patients and 14% of carers of depression, respectively. Overall, 70% of patients and 58% of carers had QoL scores below the Queensland population average. Patients' anxiety, depression, overall QoL, social, emotional and functional wellbeing scores were significantly related to those scores in their carers. Among patients and carers, accessing psychological help was associated with elevated anxiety. Not receiving chemotherapy was associated with elevated depression among patients and younger age was associated with poorer outcomes in carers. CONCLUSIONS: More carers had symptoms of anxiety than patients with pancreatic cancer, but symptoms of depression were similarly common in patients and carers. Further research is needed to assess whether interventions to reduce patients' distress could also improve QoL among carers, or whether carer-focussed interventions are required.


Asunto(s)
Ansiedad/etiología , Cuidadores , Depresión/etiología , Neoplasias Pancreáticas/psicología , Calidad de Vida , Anciano , Ansiedad/epidemiología , Australia , Depresión/epidemiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias Pancreáticas/epidemiología , Neoplasias Pancreáticas/terapia
20.
Qual Health Res ; 27(7): 983-993, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-26984366

RESUMEN

Experiences of cancer are enmeshed with cultural understandings and social discourses around responsibility and causation. A cancer diagnosis can raise questions about its causation-including the role of the individual-whereas the disease and its treatment provide various social markers of illness. We present a sociological study of 81 women's accounts of living with cancer, with a focus on how women interpret their illness, in light of their interpersonal interactions and accounts of social relations. Our analysis reveals women's experiences of cancer diagnosis and treatment, the varied sociocultural meanings of cancer and the responses it elicits, the presence of moral assessments within everyday interactions, and the implications for the support and care they receive. We argue that the experience of cancer should be seen as intimately interwoven with its social reception and cultural sense-making practices, including normative constructs which promote ideas about (in)justice, responsibilization, and shame.


Asunto(s)
Características Culturales , Relaciones Interpersonales , Neoplasias/psicología , Adulto , Anciano , Cuidadores/psicología , Femenino , Culpa , Conductas Relacionadas con la Salud , Humanos , Persona de Mediana Edad , Negociación , Vergüenza , Salud de la Mujer
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