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BACKGROUND AND OBJECTIVES: Current national or regional guidelines for the pathology reporting on invasive breast cancer differ in certain aspects, resulting in divergent reporting practice and a lack of comparability of data. Here we report on a new international dataset for the pathology reporting of resection specimens with invasive cancer of the breast. The dataset was produced under the auspices of the International Collaboration on Cancer Reporting (ICCR), a global alliance of major (inter-)national pathology and cancer organizations. METHODS AND RESULTS: The established ICCR process for dataset development was followed. An international expert panel consisting of breast pathologists, a surgeon, and an oncologist prepared a draft set of core and noncore data items based on a critical review and discussion of current evidence. Commentary was provided for each data item to explain the rationale for selecting it as a core or noncore element, its clinical relevance, and to highlight potential areas of disagreement or lack of evidence, in which case a consensus position was formulated. Following international public consultation, the document was finalized and ratified, and the dataset, which includes a synoptic reporting guide, was published on the ICCR website. CONCLUSIONS: This first international dataset for invasive cancer of the breast is intended to promote high-quality, standardized pathology reporting. Its widespread adoption will improve consistency of reporting, facilitate multidisciplinary communication, and enhance comparability of data, all of which will help to improve the management of invasive breast cancer patients.
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Neoplasias de la Mama , Humanos , Neoplasias de la Mama/patología , Femenino , Patología Clínica/normas , Conjuntos de Datos como Asunto/normasRESUMEN
AIMS: The International Collaboration on Cancer Reporting (ICCR), a global alliance of major (inter-)national pathology and cancer organisations, is an initiative aimed at providing a unified international approach to reporting cancer. ICCR recently published new data sets for the reporting of invasive breast carcinoma, surgically removed lymph nodes for breast tumours and ductal carcinoma in situ, variants of lobular carcinoma in situ and low-grade lesions. The data set in this paper addresses the neoadjuvant setting. The aim is to promote high-quality, standardised reporting of tumour response and residual disease after neoadjuvant treatment that can be used for subsequent management decisions for each patient. METHODS: The ICCR convened expert panels of breast pathologists with a representative surgeon and oncologist to critically review and discuss current evidence. Feedback from the international public consultation was critical in the development of this data set. RESULTS: The expert panel concluded that a dedicated data set was required for reporting of breast specimens post-neoadjuvant therapy with inclusion of data elements specific to the neoadjuvant setting as core or non-core elements. This data set proposes a practical approach for handling and reporting breast resection specimens following neoadjuvant therapy. The comments for each data element clarify terminology, discuss available evidence and highlight areas with limited evidence that need further study. This data set overlaps with, and should be used in conjunction with, the data sets for the reporting of invasive breast carcinoma and surgically removed lymph nodes from patients with breast tumours, as appropriate. Key issues specific to the neoadjuvant setting are included in this paper. The entire data set is freely available on the ICCR website. CONCLUSIONS: High-quality, standardised reporting of tumour response and residual disease after neoadjuvant treatment are critical for subsequent management decisions for each patient.
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Neoplasias de la Mama , Terapia Neoadyuvante , Humanos , Neoplasias de la Mama/patología , Neoplasias de la Mama/terapia , Femenino , Conjuntos de Datos como AsuntoRESUMEN
AIMS: Soft-tissue tumours are rare and both accurate diagnosis and proper treatment represent a global challenge. Current treatment guidelines also recommend review by specialised pathologists. Here we report on international consensus-based datasets for the pathology reporting of biopsy and resection specimens of soft-tissue sarcomas. The datasets were produced under the auspices of the International Collaboration on Cancer Reporting (ICCR), a global alliance of international pathology and cancer organisations. METHODS AND RESULTS: According to the ICCR's guidelines for dataset development, an international expert panel consisting of pathologists, a surgical oncologist, and a medical oncologist produced a set of core and noncore data items for biopsy and resection specimens based on a critical review and discussion of current evidence. All professionals involved were subspecialised soft-tissue sarcoma experts and affiliated with tertiary referral centres. Commentary was provided for each data item to explain the rationale for selecting it as a core or noncore element, its clinical relevance, and to highlight potential areas of disagreement or lack of evidence, in which case a consensus position was formulated. Following international public consultation, the documents were finalised and ratified, and the datasets, which included a synoptic reporting guide, were published on the ICCR website. CONCLUSION: These first international datasets for soft-tissue sarcomas are aimed to promote high-quality, standardised pathology reporting. Their adoption will improve consistency of reporting, facilitate multidisciplinary communication, and enhance comparability of data, all of which will help to improve patient's management.
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Patología Clínica , Sarcoma , Neoplasias de los Tejidos Blandos , Humanos , BiopsiaRESUMEN
BACKGROUND AND OBJECTIVES: Bone tumours are relatively rare and, as a consequence, treatment in a centre with expertise is required. Current treatment guidelines also recommend review by a specialised pathologist. Here we report on international consensus-based datasets for the pathology reporting of biopsy and resection specimens of bone sarcomas. The datasets were produced under the auspices of the International Collaboration on Cancer Reporting (ICCR), a global alliance of major (inter-)national pathology and cancer organisations. METHODS AND RESULTS: According to the ICCR's process for dataset development, an international expert panel consisting of pathologists, an oncologic orthopaedic surgeon, a medical oncologist, and a radiologist produced a set of core and noncore data items for biopsy and resection specimens based on a critical review and discussion of current evidence. All professionals involved were bone tumour experts affiliated with tertiary referral centres. Commentary was provided for each data item to explain the rationale for selecting it as a core or noncore element, its clinical relevance, and to highlight potential areas of disagreement or lack of evidence, in which case a consensus position was formulated. Following international public consultation, the documents were finalised and ratified, and the datasets, including a synoptic reporting guide, were published on the ICCR website. CONCLUSION: These first international datasets for bone sarcomas are intended to promote high-quality, standardised pathology reporting. Their widespread adoption will improve the consistency of reporting, facilitate multidisciplinary communication, and enhance comparability of data, all of which will help to improve management of bone sarcoma patients.
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Patología Clínica , Sarcoma , Humanos , Oncología Médica , BiopsiaRESUMEN
Gastrointestinal stromal tumours (GISTs) are the most common mesenchymal tumours of the gastrointestinal tract and are among the most frequent sarcomas. Accurate diagnosis, classification, and reporting are critical for prognostication and patient management, including selection of appropriate targeted therapy. Here we report on international consensus-based datasets for the pathology reporting of biopsy and resection specimens of GIST. The datasets were produced under the auspices of the International Collaboration on Cancer Reporting (ICCR), a global alliance of major international pathology and cancer organizations. An international expert panel consisting of pathologists, a surgical oncologist, and a medical oncologist produced a set of core and noncore data items for biopsy and resection specimens based on a critical review and discussion of current evidence. All professionals involved were subspecialized soft tissue tumour experts and affiliated with tertiary referral centres. Commentary was provided for each data item to explain its clinical relevance and the rationale for selection as a core or noncore element. Following international public consultation, the datasets, which include synoptic reporting guides, were finalized and ratified, and published on the ICCR website. These first international datasets for GIST are intended to promote high-quality, standardised pathology reporting. Their widespread adoption will improve consistency of reporting, facilitate multidisciplinary communication, and enhance comparability of data, all of which will ultimately help to improve the management of patients with GIST. All the ICCR datasets, including these on GIST, are freely available worldwide on the ICCR website (www.iccr-cancer.org/datasets).
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Carcinoma , Tumores del Estroma Gastrointestinal , Patología Clínica , Humanos , Carcinoma/patología , BiopsiaRESUMEN
A cogent and comprehensive pathologic report is essential for optimal patient management, cancer staging, and prognostication. This article details the International Collaboration on Cancer Reporting (ICCR) process and the development of the vulval carcinoma reporting data set. It describes the "core" and "noncore" elements to be included in pathology reports for vulval carcinoma, inclusive of clinical, macroscopic, microscopic, and ancillary testing considerations. It provides definitions and commentary for the evidence and/or consensus-based deliberations for each element included in the data set. The commentary also discusses controversial issues, such as p16/human papillomavirus testing, tumor grading and measurements, as well as elements that show promise and warrant further evidence-based study. A summary and discussion of the updated vulval cancer staging system by the International Federation of Obstetricians and Gynaecologists (FIGO) in 2021 is also provided. We hope the widespread implementation of this data set will facilitate consistent and accurate reporting, data collection, comparison of epidemiological and pathologic parameters between different populations, facilitate research, and serve as a platform to improve patient outcomes.
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Carcinoma , Patología Clínica , Femenino , Humanos , Carcinoma/patología , Clasificación del Tumor , Estadificación de Neoplasias , Vulva/patologíaRESUMEN
Comprehensive pathology reporting of cancers is important for patient management, tumor staging, and prognostication. Standardized cancer datasets are essential in guiding pathology reporting in a consistent and concise manner and this facilitates effective global cancer information exchange and comparison. The International Collaboration on Cancer Reporting (ICCR) is an alliance of several national and international pathology societies in many countries as well as bodies which are involved in tumor classification and staging. One function of the ICCR is to develop evidence-based, standardized reporting datasets for each cancer site. Herein, we report the development of an evidence-based cancer dataset by an ICCR panel of international experts for the reporting of primary uterine gestational trophoblastic neoplasia. We present the core elements that should be included and noncore elements that are recommended for inclusion in pathology reports. Lists of the response values are provided for each element, along with explanatory commentaries. The dataset also discusses controversial issues in the reporting of gestational trophoblastic neoplasia. Such evidence-based and structured pathology datasets developed through an international effort will facilitate consistent and accurate exchange and comparison of epidemiological and pathologic parameters among different populations and countries. This will ultimately improve gestational trophoblastic neoplasia patient care and facilitate future research.
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Carcinoma , Enfermedad Trofoblástica Gestacional , Patología Clínica , Humanos , Embarazo , Femenino , Carcinoma/patología , Estadificación de Neoplasias , Informe de Investigación , Enfermedad Trofoblástica Gestacional/diagnóstico , Enfermedad Trofoblástica Gestacional/patologíaRESUMEN
The International Collaboration on Cancer Reporting (ICCR) seeks to produce standardized, evidence-based protocols for the reporting of tumors with the aim of ensuring that all cancer reports generated worldwide will be of similar high quality and record the same elements. Herein, we describe the development of the data set for the reporting of uterine malignant and potentially malignant mesenchymal tumors by a panel of expert pathologists and a single clinician and provide the commentary and rationale for the inclusion of core and noncore elements. This data set, which incorporates the recent updates from the 5th edition of the World Health Organization Classification of Female Genital Tumors, addresses several subjects of debate including which mesenchymal tumors should be graded, how to document extent of invasion, mitotic counts, and the role of ancillary testing in tumor diagnosis and patient management. The inclusion of elements is evidence-based or based on consensus of the expert panel with clinical relevance being the guiding standard.
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Carcinoma , Patología Clínica , Sarcoma , Femenino , Humanos , Patólogos , Informe de Investigación , Carcinoma/patologíaRESUMEN
CONTEXT.: The International Collaboration on Cancer Reporting (ICCR), supported by major pathology and cancer organizations, aims at the standardization of evidence-based pathology reporting of different types of cancers, with the inclusion of all parameters deemed to be relevant for best patient care and future data collection. Lymph node metastasis is one of the most important prognostic factors in breast cancer. OBJECTIVE.: To produce a histopathology reporting guide by a panel of recognized experts from the fields of pathology and surgery with elements deemed to be core (required) and noncore (recommended) to report when assessing regional lymph nodes of patients with breast cancer. DATA SOURCES.: Published literature, previous guidelines/recommendations, and current cancer staging principles were the basis of the data set drafted by the expert panel. This was discussed in a series of teleconferences and email communications. The draft data set was then made available for public consultation through the ICCR Web site. After this consultation and ICCR ratification, the data set was finalized. CONCLUSIONS.: The ICCR has published a data set for the reporting of surgically removed lymph nodes (including sentinel lymph node biopsy, axillary lymph node dissection, targeted axillary surgery, and lymph node sampling specimens) for breast tumors. This is part of a series of 4 ICCR breast cancer-related data sets. It includes 10 core elements along with 2 noncore elements. This should allow for synoptic reporting, which is more precise, uniform, and complete than nonsynoptic reporting, and leads to improved patient outcomes.
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Neoplasias de la Mama , Patología Clínica , Humanos , Femenino , Biopsia del Ganglio Linfático Centinela , Neoplasias de la Mama/cirugía , Metástasis Linfática , Ganglios Linfáticos/cirugíaRESUMEN
BACKGROUND: The 2009 H1N1 influenza pandemic (influenza A(H1N1)pdm09) disproportionately impacted Indigenous peoples. Indigenous Australians are also affected by a health gap in chronic disease prevalence. We hypothesised that the disparity in influenza incidence and severity was accounted for by higher chronic disease prevalence. METHODS: We analysed influenza data from Western Australia, South Australia, the Northern Territory, and Queensland. We calculated population prevalence of chronic diseases in Indigenous and non-Indigenous Australian populations using nationally-collected health survey data. We compared influenza case notifications, hospitalisations, intensive care admissions, and deaths reported amongst the total population of Indigenous and non-Indigenous Australians ≥ 15 years. We accessed age-specific influenza data reported to the Australian Department of Health during the 2009 'swine flu' pandemic, stratified by Indigenous status and the presence of one of five chronic conditions: chronic lower respiratory conditions, diabetes mellitus, obesity, renal disease, and cardiac disease. We calculated age-standardised Indigenous: non-Indigenous rate ratios and confidence intervals. FINDINGS: Chronic diseases were more prevalent in Indigenous Australians. Rates of influenza diagnoses were higher in Indigenous Australians and more frequent across all indices of severity. In those with chronic conditions, Indigenous: non-Indigenous influenza notification rate ratios were no lower than in the total population; in many instances they were higher. Rate ratios remained above 1·0 at all levels of severity. However, once infected (reflected in notifications), there was no evidence of a further increase in risk of severe outcomes (hospitalisations, ICU admissions, deaths) amongst Indigenous Australians compared to non-Indigenous Australians with a chronic disease. INTERPRETATION: Higher rates of influenza infection was observed amongst those Indigenous compared to non-Indigenous Australians, and this difference was preserved amongst those with a chronic condition. However, there was no further increase in prevalence of more severe influenza outcomes amongst Indigenous Australians with a chronic condition. This suggests that the prevalence of chronic disease, rather than Indigenous status, affected influenza severity. Other factors may be important, including presence of multiple morbidities, as well as social and cultural determinants of health.
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Subtipo H1N1 del Virus de la Influenza A , Gripe Humana , Enfermedad Crónica , Humanos , Incidencia , Pueblos Indígenas , Gripe Humana/epidemiología , Northern TerritoryRESUMEN
Primary carcinomas of the vagina are uncommon and currently detailed recommendations for the reporting of resection specimens of these neoplasms are not widely available. The International Collaboration on Cancer Reporting (ICCR) is developing standardized, evidence-based reporting data sets for multiple cancer sites. We describe the development of a cancer data set by the ICCR expert panel for the reporting of primary vaginal carcinomas and present the core and noncore data elements with explanatory commentaries. This data set has incorporated the updates in the 2020 World Health Organization Classification of Female Genital Tumours, 5th edition. The data set addresses controversial issues such as tumor grading, margin assessment, and the role of ancillary studies. The adoption of this data set into clinical practice will help ensure standardized data collection across different countries, facilitate future research on vaginal carcinomas, and ultimately lead to improvements in patient care.
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Carcinoma , Patología Clínica , Femenino , Humanos , Carcinoma/patología , Clasificación del Tumor , Vagina/patologíaRESUMEN
CONTEXT.: A standardized detailed surgical pathology report is the cornerstone of gastric cancer management. OBJECTIVE.: To guide management and prognostication for patients with gastric carcinomas globally, the International Collaboration on Cancer Reporting aimed to produce an evidence-based international pathology reporting data set with a panel of globally recognized expert pathologists and clinicians. DESIGN.: Based on published guidelines/data sets for gastric carcinomas, a working draft was developed by the chair of the expert panel of pathologists and clinicians. The draft was then circulated to the panel and discussed in a series of teleconferences and email communications until consensus was achieved. The draft data set was uploaded on the International Collaboration on Cancer Reporting Web site for public comment. The data set was reviewed in consideration of the feedback, and a final version was approved by the panel. RESULTS.: This data set was developed for gastrectomy specimens for primary gastric carcinomas, including neuroendocrine carcinomas and mixed neuroendocrine-nonneuroendocrine neoplasms. Well-differentiated neuroendocrine tumors, nonepithelial malignancies, and secondary tumors were excluded from this data set. The final data set contains 15 core (required) elements and 8 noncore (recommended) elements. A commentary is provided for each element. CONCLUSIONS.: The International Collaboration on Cancer Reporting has published freely available, evidence-based data sets for gastric cancer reporting. Standardized reporting has been shown to improve patient care and facilitates data exchange and analysis for quality assurance, cancer epidemiology, and clinical and basic research.
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Carcinoma , Patología Clínica , Neoplasias Gástricas , Carcinoma/patología , Gastrectomía , Humanos , Neoplasias Gástricas/cirugíaRESUMEN
OBJECTIVE: The aim of this study to describe a new international dataset for pathology reporting of colorectal cancer surgical specimens, produced under the auspices of the International Collaboration on Cancer Reporting (ICCR). BACKGROUND: Quality of pathology reporting and mutual understanding between colorectal surgeon, pathologist and oncologist are vital to patient management. Some pathology parameters are prone to variable interpretation, resulting in differing positions adopted by existing national datasets. METHODS: The ICCR, a global alliance of major pathology institutions with links to international cancer organizations, has developed and ratified a rigorous and efficient process for the development of evidence-based, structured datasets for pathology reporting of common cancers. Here we describe the production of a dataset for colorectal cancer resection specimens by a multidisciplinary panel of internationally recognized experts. RESULTS: The agreed dataset comprises eighteen core (essential) and seven non-core (recommended) elements identified from a review of current evidence. Areas of contention are addressed, some highly relevant to surgical practice, with the aim of standardizing multidisciplinary discussion. The summation of all core elements is considered to be the minimum reporting standard for individual cases. Commentary is provided, explaining each element's clinical relevance, definitions to be applied where appropriate for the agreed list of value options and the rationale for considering the element as core or non-core. CONCLUSIONS: This first internationally agreed dataset for colorectal cancer pathology reporting promotes standardization of pathology reporting and enhanced clinicopathological communication. Widespread adoption will facilitate international comparisons, multinational clinical trials and help to improve the management of colorectal cancer globally.
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Neoplasias Colorrectales/patología , Conjuntos de Datos como Asunto/normas , Proyectos de Investigación , HumanosRESUMEN
AIMS: Current guidelines for pathology reporting on pancreatic cancer differ in certain aspects, resulting in divergent reporting practices and a lack of comparability of data. Here, we report on a new international dataset for pathology reporting on resection specimens with cancer of the exocrine pancreas (ductal adenocarcinoma and acinar cell carcinoma). The dataset was produced under the auspices of the International Collaboration on Cancer Reporting (ICCR), which is a global alliance of major (inter)national pathology and cancer organisations. METHODS AND RESULTS: According to the ICCR's rigorous process for dataset development, an international expert panel consisting of pancreatic pathologists, a pancreatic surgeon and an oncologist produced a set of core and non-core data items based on a critical review and discussion of current evidence. Commentary was provided for each data item to explain the rationale for selecting it as a core or non-core element and its clinical relevance, and to highlight potential areas of disagreement or lack of evidence, in which case a consensus position was formulated. Following international public consultation, the document was finalised and ratified, and the dataset, which includes a synoptic reporting guide, was published on the ICCR website. CONCLUSIONS: This first international dataset for cancer of the exocrine pancreas is intended to promote high-quality, standardised pathology reporting. Its widespread adoption will improve the consistency of reporting, facilitate multidisciplinary communication, and enhance the comparability of data, all of which will help to improve the management of pancreatic cancer patients.
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Carcinoma de Células Acinares , Carcinoma Ductal Pancreático , Conjuntos de Datos como Asunto , Neoplasias Pancreáticas , Patología Clínica/normas , Humanos , Proyectos de Investigación/normasAsunto(s)
Carcinoma/patología , Neoplasias Colorrectales/patología , Patología Clínica/normas , Pólipos/patología , Biopsia , Carcinoma/cirugía , Colectomía , Neoplasias Colorrectales/cirugía , Consenso , Medicina Basada en la Evidencia/normas , Humanos , Pólipos/cirugía , Valor Predictivo de las Pruebas , PronósticoRESUMEN
OBJECTIVES: To describe and compare vaccination coverage for Aboriginal and Torres Strait Islander (hereafter referred to as Indigenous) adults in 2004-05 and 2012-13, including the impact of national vaccination funding initiatives. METHODS: National Aboriginal and Torres Strait Islander Health cross-sectional surveys - 2004-05 (n=5,757) and 2012-13 (n=5,482) - were compared. Self-reported influenza and pneumococcal vaccination coverage among Indigenous adults was analysed by age, remoteness, gender and risk factor status. RESULTS: Influenza vaccination coverage among Indigenous adults in 2004-05 and 2012-13 remained low. While coverage increased for those aged 18-49 years from 23% to 29%, it declined for those aged ≥65 years from 84% to 74%. For remote areas, influenza coverage among those aged 50-64 years declined from 76% to 66%. Pneumococcal vaccination coverage remained very low and declined across all age groups in 2004-05 and 2012-13 (50-64 years: 30% to 23%). For remote areas, pneumococcal coverage declined among those aged 50-64 years from 52% to 32%. CONCLUSIONS: Indigenous adult vaccination coverage for influenza and pneumococcal disease remains unacceptably low. Between 2004-05 and 2012-13, declines occurred in pneumococcal vaccination coverage across all age groups ≥18 years. Despite national funding of influenza vaccine in 2010, there was no increase in influenza coverage, except for the 18-49-year age group. Implications for public health: Current approaches to promote, deliver and monitor vaccination of Indigenous adults are inadequate.
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Servicios de Salud del Indígena/estadística & datos numéricos , Vacunas contra la Influenza/administración & dosificación , Gripe Humana/prevención & control , Cobertura de Vacunación/estadística & datos numéricos , Vacunación/estadística & datos numéricos , Adolescente , Adulto , Distribución por Edad , Anciano , Anciano de 80 o más Años , Australia/epidemiología , Control de Enfermedades Transmisibles , Estudios Transversales , Femenino , Humanos , Programas de Inmunización/normas , Masculino , Persona de Mediana Edad , Programas Nacionales de Salud , Nativos de Hawái y Otras Islas del Pacífico , Cobertura de Vacunación/tendencias , Adulto JovenRESUMEN
BACKGROUND: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness. AIM: This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients. DESIGN: A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature. DATA SOURCES: MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992-2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritual or existential issues or concerns not leading to suffering. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are reported according to AMSTAR guidelines. RESULTS: The studies represented seven intervention types. Meaning-centred, hope-centred and stress-reduction interventions were found to be effective. Results of both psycho-educational and spiritual interventions in improving spiritual well-being were mixed. Supportive-expressive interventions - with the exception of forgiveness therapy - were not efficacious. There was little or no evidence for the efficacy of creative and healing arts and other assessed interventions such as animal therapy and haptotherapy. CONCLUSION: This systematic review found that spiritual well-being, meaning, hope and benefit finding can be positively impacted by a variety of treatment modalities.
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Salud Holística , Esperanza , Terapias Mente-Cuerpo/métodos , Neoplasias/psicología , Psicoterapia/métodos , Espiritualidad , Estrés Psicológico/terapia , Enfermo Terminal/psicología , Adulto , Bases de Datos Bibliográficas , Humanos , Neoplasias/terapia , Estrés Psicológico/etiología , Estrés Psicológico/psicologíaRESUMEN
OBJECTIVE: Patient suffering is a neglected area of care, partly because of poor definitions. The aim of this study was to distill what is currently known about suffering in the health literature in order to generate a conceptual basis for further research. METHODS: A systematic review focusing on suffering across all cancers was undertaken. The search included peer-reviewed English articles published between 1992 and 2012 in MEDLINE, Embase, PsycINFO and the Cochrane Library databases focusing on conceptualisation of suffering in adult cancer patients. Seminal theoretical articles conceptualising suffering more generally were also eligible. To ensure identification of a sufficiently broad range of conceptualisations of suffering in cancer, the search strategy was drafted iteratively. Study findings were subjected to conceptual analysis using the evolutionary method. RESULTS: One hundred twenty-eight studies were identified, which discussed definitions or conceptualisations of suffering. In terms of its attributes, suffering is defined as 'an all-encompassing, dynamic, individual phenomenon characterized by the experience of alienation, helplessness, hopelessness and meaninglessness in the sufferer which is difficult for them to articulate. It is multi-dimensional and usually incorporates an undesirable, negative quality.' Surrogate terms, antecedents and consequences of suffering are described. CONCLUSIONS: The systematic review revealed that suffering includes holistic suffering, which is multidimensional, oscillating, individual and difficult for individuals to express. Opportunities should be provided for patients to express their suffering. The potential for suffering to be transcended needs to be recognized and facilitated by healthcare staff.
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Neoplasias/psicología , Estrés Psicológico/psicología , Formación de Concepto , Emoción Expresada , Salud Holística , HumanosRESUMEN
OBJECTIVE: An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer. METHOD: A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared. RESULTS: A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component. SIGNIFICANCE OF RESULTS: Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.