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2.
Australas J Ageing ; 42(1): 149-158, 2023 Mar.
Article in English | MEDLINE | ID: mdl-35795904

ABSTRACT

OBJECTIVES: The present study attempted to adapt and validate the Turkish version of the Camberwell Assessment of Need for the Elderly (CANE-T). METHODS: The data of this methodological study were collected from 610 older people who volunteered between September 10 and December 15, 2019. The SPSS 20 and LISREL software were used to perform reliability (internal reliability, parallel forms reliability/equivalent forms, and test-retest reliability) and validity (exploratory factor analysis and confirmatory factor analysis) analyses for the CANE-T. RESULTS: The Kaiser-Meyer-Olkin test revealed the sampling adequacy to be 0.72. After deleting four items (psychological distress, behavior, alcohol, and money) with a factor loading below 0.30 from the dataset, it was found that the scores on the scale explained 55% of the total variance. Besides, the confirmatory factor analysis revealed the following fit indices: p < 0.05, root mean square error of approximation (RMSEA) = 0.08, root mean square residuals (RMR) = 0.07, standardized root mean square residual (SRMR) = 0.07, goodness-of-fit index (GFI) = 0.88, and adjusted goodness-of-fit index (AGFI) = 0.84. Concerning reliability, Cronbach's α values were calculated to be 0.78 for 'Physical Needs', 0.74 for 'Psychophysiological Needs', 0.75 for 'Security Needs', 0.75 for 'Social Needs', and 0.75 for 'Health Needs'. CONCLUSIONS: Overall, it was concluded that the 20-item five-factor CANE-T is a valid and reliable tool to measure the needs of older adults in the Turkish context.


Subject(s)
Needs Assessment , Surveys and Questionnaires , Humans , Aged , Aged, 80 and over , Surveys and Questionnaires/standards , Reproducibility of Results , Factor Analysis, Statistical , Psychometrics , Turkey , Needs Assessment/standards
3.
JAMA Netw Open ; 4(10): e2127457, 2021 10 01.
Article in English | MEDLINE | ID: mdl-34605916

ABSTRACT

Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood. Objective: To assess the pediatric-specific training and support needs of hospice nurses caring for children in the community. Design, Setting, and Participants: For this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted. Main Outcomes and Measures: The interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training. Results: Interviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community. Conclusions and Relevance: In this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.


Subject(s)
Hospices/methods , Needs Assessment/statistics & numerical data , Nurses, Community Health/psychology , Adult , Female , Hospices/statistics & numerical data , Humans , Interviews as Topic , Male , Middle Aged , Needs Assessment/standards , Nurses, Community Health/statistics & numerical data , Pediatrics/methods , Pediatrics/statistics & numerical data , Qualitative Research , Surveys and Questionnaires
4.
Health Qual Life Outcomes ; 19(1): 214, 2021 Sep 06.
Article in English | MEDLINE | ID: mdl-34488787

ABSTRACT

BACKGROUND: The Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF) is a tool created to assess the needs of people living with heart failure and their informal caregivers to assist delivering care in a more comprehensive way that addresses actual needs that are unmet, and to improve quality of life. In this study, we aimed to (1) Translate the tool into German and culturally adapt it. (2) Assess internal consistency, inter-rater reliability, and test-retest reliability of the German NAT: PD-HF. (3) Evaluate whether and how patients and health care personnel understand the tool and its utility. (4) Assess the tool's face validity, applicability, relevance, and acceptability among health care personnel. METHODS: Single-center validation study. The tool was translated from English into German using a forward-backward translation. To assess internal consistency, we used Cronbach´s alpha. To assess inter-rater reliability and test-retest reliability, we used Cohen´s kappa, and to assess validity we used face validity. RESULTS: The translated tool showed good internal consistency. Raters were in substantial agreement on a majority of the questions, and agreement was almost perfect for all the questions in the test-retest analysis. Face validity was rated high by health care personnel. CONCLUSION: The German NAT: PD-HF is a reliable, valid, and internally consistent tool that is well accepted by both patients and health care personnel. However, it is important to keep in mind that effective use of the tool requires training of health care personnel.


Subject(s)
Heart Failure/diagnosis , Heart Failure/therapy , Needs Assessment/standards , Quality of Life/psychology , Surveys and Questionnaires/standards , Aged , Disease Progression , Female , Germany , Humans , Male , Middle Aged , Palliative Care , Patient-Centered Care , Reproducibility of Results , Stroke Volume , Translating
6.
Front Endocrinol (Lausanne) ; 12: 701365, 2021.
Article in English | MEDLINE | ID: mdl-34354671

ABSTRACT

Adrenal crisis is the most severe manifestation of adrenal insufficiency (AI), but AI can present with variable signs and symptoms of gradual severity. Despite current hormone replacement strategies, adrenal crisis is still one of the leading causes of mortality in AI patients. Although underlying factors explaining differences in interindividual susceptibility are not completely understood, several subgroups are particularly vulnerable to adrenal crises, such as patients with primary AI, and patients treated for Cushing's syndrome. Currently, the health care professional faces several challenges in the care for AI patients, including the lack of reliable biomarkers measuring tissue cortisol concentrations, absence of a universally used definition for adrenal crisis, and lack of clinical tools to identify individual patients at increased risk. Also from the patient's perspective, there are a number of steps to be taken in order to increase and evaluate self-management skills and, finally, improve health-related quality of life (HR-QoL). In this respect, the fact that inadequate handling of AI patients during stressful situations is a direct consequence of not remembering how to act due to severe weakness and cognitive dysfunction in the context of the adrenal crisis is quite underexposed. In this narrative review, we give an overview of different clinical aspects of adrenal crisis, and discuss challenges and unmet needs in the management of AI and the adrenal crisis from both the doctor's and patient's perspective. For the latter, we use original focus group data. Integration of doctor's and patient's perspectives is key for successful improvement of HR-QoL in patients with AI.


Subject(s)
Adrenal Insufficiency/drug therapy , Hormone Replacement Therapy/methods , Needs Assessment/standards , Quality of Life , Adrenal Insufficiency/pathology , Humans
7.
Gastroenterology ; 161(3): 1030-1042.e8, 2021 09.
Article in English | MEDLINE | ID: mdl-34416976

ABSTRACT

Nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are common conditions with a rising burden. Yet there are significant management gaps between clinical guidelines and practice in patients with NAFLD and NASH. Further, there is no single global guiding strategy for the management of NAFLD and NASH. The American Gastroenterological Association, in collaboration with 7 professional associations, convened an international conference comprising 32 experts in gastroenterology, hepatology, endocrinology, and primary care providers from the United States, Europe, Asia, and Australia. Conference content was informed by the results of a national NASH Needs Assessment Survey. The participants reviewed and discussed published literature on global burden, screening, risk stratification, diagnosis, and management of individuals with NAFLD, including those with NASH. Participants identified promising approaches for clinical practice and prepared a comprehensive, unified strategy for primary care providers and relevant specialists encompassing the full spectrum of NAFLD/NASH care. They also identified specific high-yield targets for clinical research and called for a unified, international public health response to NAFLD and NASH.


Subject(s)
Epidemics , Gastroenterology/standards , Global Health/standards , Health Services Needs and Demand/standards , Needs Assessment/standards , Non-alcoholic Fatty Liver Disease , Consensus , Humans , Non-alcoholic Fatty Liver Disease/diagnosis , Non-alcoholic Fatty Liver Disease/epidemiology , Non-alcoholic Fatty Liver Disease/therapy , Risk Assessment , Risk Factors , Time Factors
8.
J Assist Reprod Genet ; 38(10): 2757-2767, 2021 Oct.
Article in English | MEDLINE | ID: mdl-34333720

ABSTRACT

PURPOSE: To better understand the needs and experiences of the X-linked carrier community to improve future recognition, diagnosis, and treatment by bringing X-linked carrier voices together. METHODS: An anonymous survey link was distributed to members of Remember the Girls, a non-profit organization for female (XX) carriers of X-linked conditions, through its website, Facebook group, Instagram, and Twitter. The survey was developed to gather data on XX carriers of numerous X-linked conditions. RESULTS: One hundred and fifty individuals participated in the study. The majority (81/150) of individuals learned about their carrier status by giving birth to a son diagnosed with an X-linked condition. However, over 80% (120/145) believed that they should learn this information before the age of 18. Over 80% of participants (124/148) felt that they either have or may have symptoms attributable to their X-linked condition. Yet, only 10.1% (15/148) felt that they had sufficient access to knowledgeable healthcare providers and/or medical information. Additionally, 46.7% (70/150) of participants reported that healthcare providers did not discuss reproductive options with them. Improving carrier access to medical information, research studies, new treatments, and reproductive methods was found to be the top priority. CONCLUSION: Limited information exists on X-linked carriers' risk for symptoms and there is a lack of available treatments. This study demonstrates the need for more knowledgeable healthcare providers and medical information within the X-linked carrier community.


Subject(s)
Genetic Carrier Screening/methods , Genetic Diseases, X-Linked/diagnosis , Heterozygote , Needs Assessment/standards , Adult , Female , Genetic Diseases, X-Linked/genetics , Genetic Diseases, X-Linked/prevention & control , Humans , Middle Aged , Pregnancy , Surveys and Questionnaires
9.
J Perinat Med ; 49(9): 1042-1047, 2021 Nov 25.
Article in English | MEDLINE | ID: mdl-34008379

ABSTRACT

Despite substantial improvement in reducing maternal mortality during the recent decades, we constantly face tragic fact that maternal mortality (especially preventable deaths) is still unacceptably too high, particularly in the developing countries, where 99% of all maternal deaths worldwide occur. Poverty, lack of proper statistics, gender inequality, beliefs and corruption-associated poor governmental policies are just few of the reasons why decline in maternal mortality has not been as sharp as it was wished and expected. Education has not yet been fully recognized as the way out of poverty, improvement of women's role in the society and consequent better perinatal care and consequent lower maternal mortality. Education should be improved on all levels including girls, women and their partners, medical providers, religious and governmental authorities. Teaching the teachers should be also an essential part of global strategy to lower maternal mortality. This paper is mostly a commentary, not a systematic review nor a meta-analysis with the aim to rise attention (again) to the role of different aspects of education in lowering maternal mortality. The International Academy of Perinatal Medicine should play a crucial role in pushing the efforts on this issue as the influential instance that promotes reflection and dialog in perinatal medicine, especially in aspects such as bioethics, the appropriate use of technological advances, and the sociological and humanistic dimensions of this specific problem of huge magnitude. The five concrete steps to achieve these goals are listed and discussed.


Subject(s)
Maternal Mortality/trends , Needs Assessment , Perinatal Care , Perinatology , Developing Countries , Educational Status , Health Knowledge, Attitudes, Practice , Humans , Needs Assessment/organization & administration , Needs Assessment/standards , Perinatal Care/organization & administration , Perinatal Care/standards , Perinatology/ethics , Perinatology/methods , Professional Role
10.
Am J Trop Med Hyg ; 104(3): 812-813, 2021 01 25.
Article in English | MEDLINE | ID: mdl-33534749

ABSTRACT

The Nairobi Summit, held in November 2019 and convened by the United Nations Fund for Population Activities, claims to have represented "all nations and peoples, and all segments" of society during its high-level conference. The overall aim of the summit was to mobilize political will and financial commitments that are urgently needed to "finally and fully" implement the 1994 International Conference on Population and Development (ICPD) Program of Action. Despite the recommendation by ICPD to incorporate infertility care in reproductive health services, the new Nairobi Statement largely neglects the topic of infertility. This is particularly troublesome as infertility is a global health problem affecting between 52.6 and 72.4 million couples worldwide, with a high prevalence in low- and middle-income settings. For many people around the world, infertility constitutes an emotional, social, and financial burden, yet appropriate services directed toward preventing and addressing infertility are often inaccessible, unaffordable, or nonexistent. With the impetus of a wider reproductive justice community, we call for the integration of infertility into global reproductive health research and practice, urging policy makers, practitioners, researchers, activists, and funders worldwide to bring focused attention to addressing challenges posed by a lack of safe, effective, and dignified fertility management among those in need.


Subject(s)
Infertility/therapy , International Cooperation , Needs Assessment/ethics , Needs Assessment/standards , Reproductive Health Services/organization & administration , Social Justice/ethics , Social Justice/standards , Adult , Congresses as Topic , Female , Humans , Kenya , Male , Middle Aged
11.
Psicothema (Oviedo) ; 33(1): 155-163, feb. 2021. tab, graf
Article in English | IBECS | ID: ibc-199564

ABSTRACT

BACKGROUND: The Cancer Survivors' Unmet Needs (CaSUN) measure is an assessment tool developed specifically for this population but several issues about its structural properties still remain unresolved. METHOD: The present study tests the theoretical model, the original authors' empirical solution, and a new rational proposal of the CaSUN using Confirmatory Factor Analysis. Reliability and convergent validity are also analysed. 566 Spanish breast cancer survivors completed the CaSUN, the Brief Symptom Inventory-18 (BSI-18) and the Quality of Life in Adult Cancer Survivors questionnaire (QLACS). RESULTS: The proposed model of five domains (physical effects, psychological effects, comprehensive care and information, practical issues, and relationships) plus a total score provided better fit than the authors' theoretical proposal and some advantages over their empirical proposal. Internal consistency (Alpha = .73 - .95; r item-total > .30) and test-retest reliability (r = .74 - 89) were adequate. The CaSUN correlated with high emotional distress (r = .43 - .77) and poor quality of life (r = .18 - .64). CONCLUSIONS: The CaSUN-S is an effective and complete instrument that can help health professionals to collect data about the impact of the disease beyond the diagnosis and treatment phase that is important for patient care


ANTECEDENTES: el Cancer Survivors' Unmet Needs (CaSUN) ha sido desarrollado para esta población, pero varias cuestiones sobre sus propiedades estructurales permanecen inconclusas. MÉTODO: este estudio prueba el modelo teórico, la solución empírica de los autores originales y una nueva propuesta racional del CaSUN utilizando Análisis Factorial Confirmatorio; también analiza su fiabilidad y validez convergente. 566 supervivientes de cáncer de mama completaron el CaSUN, el Inventario Breve de Síntomas-18 (BSI-18) y el Quality of Life in Adult Cancer Survivors (QLACS). RESULTADOS: el modelo propuesto de cinco dominios (efectos físicos, efectos psicológicos, atención integral e información, cuestiones prácticas y relaciones) y una puntuación total proporcionó un mejor ajuste que la propuesta teórica de los autores y algunas ventajas respecto a su propuesta empírica. La consistencia interna (alfa = .73 - .95; r item-total > .30) y la fiabilidad test-retest (r = .51 - .89) fueron apropiadas. El CaSUN correlacionó con alto distrés emocional (r = .43 - .77) y baja calidad de vida (r = .18 - .64). CONCLUSIONES: el CaSUN-S es un instrumento eficaz y completo que ayuda a los profesionales de la salud a obtener información sobre las repercusiones de la enfermedad más allá del diagnóstico y tratamiento para su atención


Subject(s)
Humans , Female , Adult , Middle Aged , Breast Neoplasms/epidemiology , Breast Neoplasms/psychology , Psychometrics/instrumentation , Cancer Survivors/psychology , Needs Assessment/standards , Surveys and Questionnaires , Quality of Life/psychology , Cross-Sectional Studies
12.
Qual Life Res ; 30(5): 1503-1512, 2021 May.
Article in English | MEDLINE | ID: mdl-33492589

ABSTRACT

PURPOSE: The PACIC assesses key components of the Chronic Care Model. The purpose of this study is to examine the dimensionality and psychometric properties of the PACIC. METHODS: A convenience sample of 221 adults in Canada who self-identified as living with one or more physical and/or mental chronic diseases was invited to participate via an online survey link. Rasch analysis was performed, including item and person misfit, reliability, response format, targeting, unidimensionality of subscales, and differential item functioning (DIF). Also, Confirmatory Factor Analysis (CFA) was conducted and model fit of alternative factor structures proposed for the PACIC in the literature and those suggested by the Rasch analysis were explored. RESULTS: The patient activation, delivery system, and problem-solving subscales fit the Rasch model expectations; no modifications were required. The goal setting item 10 had a disordered threshold and was recoded. Four of the five follow-up subscale items had a disordered threshold and were recoded. All subscales were unidimensional and no local dependency was detected. DIF was only detected for some items in the follow-up subscale. The CFA revealed that none of the published factor structures fit the data; the fit statistics were appropriate when item 10 was removed and the follow-up subscale was removed. CONCLUSIONS: Improving chronic disease care relies upon having validated measures to evaluate the extent to which care goals are met. With some modifications, four of the five PACIC subscales were found to be psychometrically robust.


Subject(s)
Chronic Disease/epidemiology , Needs Assessment/standards , Psychometrics/methods , Quality of Life/psychology , Factor Analysis, Statistical , Female , Humans , Male , Surveys and Questionnaires
13.
Support Care Cancer ; 29(8): 4285-4293, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33411046

ABSTRACT

BACKGROUND: Palliative care (PC) education for fellows in hematology/oncology (H/O) training programs is widely accepted, but no studies to date have assessed PC education practices and values among program leadership. METHODS: Program Directors and Associate Program Directors of active H/O fellowship programs in the U.S.A. were surveyed. RESULTS: Of 149 programs contacted, 84 completed the survey (56% response rate), of which 100% offered some form of PC education. The most frequently utilized methods of PC education were didactic lectures/conferences (93%), required PC rotations (68%), and simulation/role-playing (42%). Required PC rotations were ranked highest, and formal didactic seminars/conferences were ranked fifth in terms of perceived effectiveness. The majority felt either somewhat (60%) or extremely satisfied (30%) with the PC education at their program. Among specific PC domains, communication ranked highest, addressing spiritual distress ranked lowest, and care for the imminently dying ranked second lowest in importance and competency. Solid tumor oncologists reported more personal comfort with pain management (p = 0.042), non-pain symptom management (p = 0.014), ethical/legal issues (p = 0.029), reported their fellows were less competent in pain assessment/management (p = 0.006), and communication (p = 0.011), and were more satisfied with their program's PC education (p = 0.035) as compared with hematologists. CONCLUSIONS: Significant disparities exist between those modalities rated most effective for PC education and those currently in use. Clinical orientation of program leadership can affect both personal comfort with PC skills and estimations of PC curriculum effectiveness and fellows' competency. H/O fellowship programs would benefit from greater standardization and prioritization of active PC education modalities and content.


Subject(s)
Education, Medical, Graduate/standards , Fellowships and Scholarships/standards , Needs Assessment/standards , Palliative Care/methods , Female , Humans , Male , United States
14.
Support Care Cancer ; 29(8): 4693-4704, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33511477

ABSTRACT

PURPOSE: In the USA, many of the nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer each year do not receive services to address the full scope of needs they experience during and after cancer treatment. To facilitate a systematic and patient-centered approach to delivering services to address the unmet needs of AYAs with cancer, we developed the AYA Needs Assessment & Service Bridge (NA-SB). METHODS: To develop NA-SB, we leveraged user-centered design, an iterative process for intervention development based on prospective user (i.e., provider and AYA) engagement. Specifically, we conducted usability testing and concept mapping to refine an existing tool-the Cancer Needs Questionnaire-Young People-to promote its usability and usefulness in routine cancer practice. RESULTS: Our user-centered design process yielded a need assessment which assesses AYAs' physical, psychosocial, and practical needs. Importantly, needs in the assessment are grouped by services expected to address them, creating an intuitive and actionable link between needs and services. CONCLUSION: NA-SB has the potential to improve care coordination at the individual level by allowing cancer care programs to tailor service delivery and resource provision to the individual needs of AYAs they serve.


Subject(s)
Needs Assessment/standards , Neoplasms/psychology , Adolescent , Adult , Female , Humans , Male , Prospective Studies , Surveys and Questionnaires , United States , Young Adult
15.
Cancer Med ; 10(2): 745-756, 2021 01.
Article in English | MEDLINE | ID: mdl-33319508

ABSTRACT

BACKGROUND: In 2018, approximately 60,000 Ugandans were estimated to be suffering from cancer. It was also reported that only 5% of cancer patients access cancer care and 77% present with late-stage cancer coupled with low level of cancer health literacy in the population despite a wide coverage of primary healthcare facilities in Uganda. We aimed to contribute to reducing the unmet needs of cancer prevention and early detection services in Uganda through capacity building. METHODS: In 2017, we conducted two national and six regional cancer control stakeholders' consultative meetings. In 2017 and 2018, we trained district primary healthcare teams on cancer prevention and early detection. We also developed cancer information materials for health workers and communities and conducted a follow-up after the training. RESULTS: A total of 488 primary healthcare workers from 118 districts were trained. Forty-six health workers in the pilot East-central subregion were further trained in cervical, breast, and prostate cancer early detection (screening and early diagnosis) techniques. A total of 32,800 cancer information, education and communication materials; breast, cervical, prostate childhood and general cancer information booklets; health education guide, community cancer information flipcharts for village health teams and referral guidelines for suspected cancer were developed and distributed to 122 districts. Also, 16 public and private-not-for-profit regional hospitals, and one training institution received these materials. Audiovisual clips on breast, cervical, and prostate cancer were developed for mass and social media dissemination. A follow-up after six months to one year indicated that 75% of the districts had implemented at least one of the agreed actions proposed during the training. CONCLUSIONS: In Uganda, the unmet needs for cancer control services are enormous. However, building the capacity of primary healthcare workers to integrate prevention and early detection of cancer into primary health care based on low-cost options for low-income countries could contribute to reducing the unmet needs of cancer prevention and early detection in Uganda.


Subject(s)
Capacity Building/methods , Delivery of Health Care/standards , Early Detection of Cancer/standards , Needs Assessment/standards , Neoplasms/diagnosis , Neoplasms/prevention & control , Primary Health Care/organization & administration , Female , Health Education , Health Workforce , Humans , Male , Surveys and Questionnaires , Uganda
16.
Eur J Cancer ; 144: 113-122, 2021 02.
Article in English | MEDLINE | ID: mdl-33341445

ABSTRACT

Wilms tumour (WT) accounts for about 6% of all childhood cancers and overall survival of WT is about 90% in international protocols. However, for WT subgroups with much poorer prognoses, i.e. typically high-risk (unfavorable) histology and/or relapse, there is an unmet need to better understand the biology of WT and to translate biological findings into clinics through early phase clinical trials that evaluate innovative therapies. The main challenges are the small numbers of children suitable for early phase trials, the genetic heterogeneity of WT and the low number of somatic mutations that are currently considered 'druggable'. Accordingly, a joint meeting between clinical and biology experts from the international cooperative groups of the Renal Tumour Study Group of the International Society of Paediatric Oncology, the Renal Tumour Committee of the Children's Oncology Group and the European Innovative Therapies for Children with Cancer consortium and parents representatives was organised during the first SIOPE meeting in Prague, 2019. We reviewed WT molecular features, ongoing/planned early phase trials and explored available knowledge on organoid technology. The key messages were: (1) relapsed WT should undergo whenever possible thorough molecular characterization and be enrolled in protocols or trials with systematic data collecting and reporting; (2) WT displays few known 'actionable' targets and currently no novel agent has appeared promising; (3) we need to improve the enrolment rate of WT candidates in early phase trials especially for the relatively small subgroup of relapses with an adverse prognostic signature; (4) despite some agnostic early phase trials existing, development of WT-focused trials are warranted; (5) growing organoids with parallel testing of drug panels seems feasible and may direct individual treatment and encourage clinical researchers to incorporate the most promising agents into early phase trials.


Subject(s)
Biomarkers, Tumor/genetics , Drug Resistance, Neoplasm , Kidney Neoplasms/pathology , Needs Assessment/standards , Organoids/pathology , Wilms Tumor/pathology , Biomarkers, Tumor/antagonists & inhibitors , Clinical Trials as Topic , Combined Modality Therapy , Humans , Kidney Neoplasms/drug therapy , Kidney Neoplasms/genetics , Neoplasm Recurrence, Local/drug therapy , Neoplasm Recurrence, Local/pathology , Organoids/drug effects , Organoids/metabolism , Prognosis , Survival Rate , Wilms Tumor/drug therapy , Wilms Tumor/genetics
17.
Disabil Rehabil Assist Technol ; 16(3): 255-261, 2021 04.
Article in English | MEDLINE | ID: mdl-31589476

ABSTRACT

PURPOSE: To measure if a knowledge-to-practice gap exists between desired practice and current practice in wheelchair assessment after the implementation of a new seating assessment tool at a university affiliated rehabilitation centre. METHODS: A 6-month retrospective chart review of 61 wheelchair assessments was undertaken to determine if the assessment was consistent with a newly implemented and evidence-based seating assessment tool. Descriptive statistics were used to analyse the data to determine the degree of completion of the 69-item assessment and across 61 individual assessments. RESULTS: Of the 61 assessments reviewed, 69% were documented using the new seating assessment tool, 21% were documented using the previous seating assessment tool, and 10% were not documented on any seating assessment tool. Completion of the 69-item assessment tool was greater than 80% in 39% of the 61 assessments. The highest rates of completion were in the categories of patient information, clinical reasoning, and goals with an average completion of 73%, 71% and 65% respectively. The categories of linear measurements, mat assessment in supine, and postural alignment in wheelchair had the lowest average completion of 45%, 40% and 30% respectively. CONCLUSION: This chart review successfully identified and quantified areas of wheelchair assessment documented in adherence to current evidence-based guidelines, as well as gaps in assessment practice that should be addressed.Implication for rehabilitationCompletion of chart review is a simple tool to describe current practice and evaluate adherence to practice standards.Identifying practice gaps is an important first step in determining areas of focus in the improvement of clinical care.Ongoing support and monitoring is required in the development and implementation of evidence-based wheelchair assessment to ensure adoption in clinical practice.


Subject(s)
Equipment Design , Evidence-Based Practice , Needs Assessment/standards , Professional Practice Gaps , Referral and Consultation/standards , Spinal Cord Injuries/rehabilitation , Wheelchairs/standards , Humans , Retrospective Studies
18.
Nurs Forum ; 56(1): 127-133, 2021 Jan.
Article in English | MEDLINE | ID: mdl-32851669

ABSTRACT

High-need high-cost (HNHC) patients are variously defined in the literature as the small subset of the population who account for the majority of US health care costs. Lack of consensus on the defining attributes of HNHC patients has challenged the effectiveness of interventions aimed to improve disease management and reduce costs. Guided by the Walker and Avant method of concept analysis, a literature review of 2 databases (PubMed and CINAHL) was conducted. Three main subgroups of HNHC patients were identified: adults with multiple chronic conditions and functional disability, the frail elderly, and patients under 65 years old with a disability or behavioral health condition. HNHC patients are categorized by a feedback loop of acute-on-chronic health conditions, preventable health service utilization, and fragmented care. Antecedents that predispose becoming a HNHC patient include challenges accessing timely care, low socioeconomic status, unmet support, and social factors such as isolation and inadequate.


Subject(s)
Concept Formation , Health Care Costs/standards , Needs Assessment/economics , Patient Acuity , Disease Management , Health Care Costs/statistics & numerical data , Humans , Needs Assessment/standards , Needs Assessment/statistics & numerical data
19.
Arch Cardiovasc Dis ; 114(1): 17-32, 2021 Jan.
Article in English | MEDLINE | ID: mdl-32863158

ABSTRACT

BACKGROUND: Heart failure management guidelines have been published, but the degree of adherence to these guidelines remains unknown. AIMS: To study in 2015 healthcare utilization and causes of death for people previously identified with heart failure. METHODS: The national health data system was used to identify adult general scheme (86% of the French population) hospitalized for heart failure between 2011 and 2014 or with only a long-term chronic disease allowance for heart failure. The frequency and median (interquartile range) of at least one healthcare use among those still alive in 2015 was calculated. RESULTS: A total of 499,296 adults (1.4% of the population) were included, and 429,853 were alive in 2015; median age 79 (68-86) years. At least one utilization was observed for a general practitioner in 95% of patients (median 8 [interquartile range 5-13] consultations), a cardiologist in 42% (2 [1-3]), a nurse in 78% (16 [4-100]), a loop diuretic in 64% (11 [8-12] dispensations), an aldosterone antagonist in 21% (8 [5-11]), a thiazide in 15% (7 [4-11]), a renin-angiotensin system inhibitor in 68% (11 [8-13]), a beta-blocker in 65% (11 [7-13]), a beta-blocker plus a renin-angiotensin system inhibitor in 57%, and a beta-blocker plus a renin-angiotensin system inhibitor plus an aldosterone antagonist in 37%. Hospitalization for heart failure was present for 8% (1 [1,2]). Higher levels of healthcare utilization were observed in the presence of hospitalization for heart failure before 2015. Among the 13.9% of people who died in 2015, heart failure accounted for 8% of causes, cardiovascular disease accounted for 39%. CONCLUSIONS: General practitioners and nurses are the main actors in the regular follow-up of patients with heart failure, whereas cardiologist consultations and dispensing of first-line treatments are insufficient with respect to guidelines.


Subject(s)
Ambulatory Care , Cardiology Service, Hospital , Delivery of Health Care, Integrated , Health Services Needs and Demand , Heart Failure/therapy , Needs Assessment , Adolescent , Adult , Aged , Aged, 80 and over , Ambulatory Care/standards , Cardiologists , Cardiology Service, Hospital/standards , Cross-Sectional Studies , Databases, Factual , Delivery of Health Care, Integrated/standards , Female , France , General Practitioners , Guideline Adherence , Health Services Needs and Demand/standards , Heart Failure/diagnosis , Heart Failure/mortality , Heart Failure/physiopathology , Humans , Inpatients , Male , Middle Aged , Needs Assessment/standards , Nurses , Outpatients , Practice Guidelines as Topic , Practice Patterns, Nurses' , Practice Patterns, Physicians' , Referral and Consultation , Time Factors , Young Adult
20.
J Rehabil Med ; 53(1): jrm00137, 2021 Jan 01.
Article in English | MEDLINE | ID: mdl-33284354

ABSTRACT

OBJECTIVE: Spasticity assessment is often used to guide treatment decision-making. Assessment tool limitations may influence the conflicting evidence surrounding the relationship between spasticity and walking. This study investigated whether testing speeds and joint angles during a Modified Tardieu assessment matched lower-limb angular velocity and range of motion during walking. DESIGN: Observational study. SUBJECTS: Thirty-five adults with a neurological condition and 34 assessors. METHODS: The Modified Tardieu Scale was completed. Joint angles and peak testing speed during V3 (fast) trials were compared with these variables during walking in healthy people, at 0.400.59, 0.600.79 and 1.401.60 m/s. The proportion of trials in which the testing speed, start angle, and angle of muscle reaction matched the relevant joint angles and angular velocity during walking were analysed. RESULTS: The Modified Tardieu Scale was completed faster than the angular velocities seen during walking in 88.7% (0.400.59 m/s), 78.9% (0.600.79 m/s) and 56.2% (1.401.60 m/s) of trials. When compared with the normative dataset, 4.2%, 9.5% and 13.7% of the trials met all criteria for each respective walking speed. CONCLUSION: When applied according to the standardized procedure and compared with joint angular velocity during walking, clinicians performed the Modified Tardieu Scale too quickly.


Subject(s)
Muscle Spasticity/diagnosis , Needs Assessment/standards , Range of Motion, Articular/physiology , Walking/physiology , Adult , Female , Humans , Male , Muscle Spasticity/physiopathology , Young Adult
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