Implementing a Clinical Pathway for Needs Assessment and Supportive Care Interventions.

Despite advances in clinical cancer care, cancer survivors frequently report a range of persisting issues, unmet needs, and concerns that limit their ability to participate in life roles and reduce quality of life. Needs assessment is recognized as an important component of cancer care delivery, ideally beginning during active treatment to connect patients with supportive services that address these issues in a timely manner. Despite the recognized importance of this process, many health care systems have struggled to implement a feasible and sustainable needs assessment and management system. This article uses an implementation science framework to guide pragmatic implementation of a needs assessment clinical system in cancer care. According to this framework, successful implementation requires four steps including (1) choosing a needs assessment tool; (2) carefully considering the provider level, clinic level, and health care system-level strengths and barriers to implementation and creating a pilot system that addresses these factors; (3) making the assessment system actionable by matching needs with clinical workflow; and (4) demonstrating the value of the system to support sustainability.

[Advancing standards for the development of evidence-based health information for consumers: Needs and priorities among members of the Network for Evidence-based Medicine]. / Inhaltliche Weiterentwicklung von Standards zur Erstellung evidenzbasierter Gesundheitsinformationen: Eine Bedarfserhebung und Priorisierung im EbM-Netzwerk.

BACKGROUND: The Good Practice Guidelines for health information, Good Health Information Austria and Guideline Evidence-based Health Information are established resources for developing evidence-based health information in the German-speaking regions. The aim of this project was to capture challenges in applying these standards in practice, identify gaps and development needs and gain insights for their further development. METHODS: In December 2020, members of the working group for patient information and involvement of the Network for Evidence-based Medicine were invited to share their experiences and needs in applying German standards for evidence-based health information through an online survey focussing on open questions (part 1: needs assessment). The feedback was analysed using qualitative content analysis and presented in a workshop at the EbM Congress 2021 with the goal of specifying the feedback from the needs assessment and discussing ideas for the further development of the standards (part 2: specification). In the final step, a second survey was conducted in February 2023 to prioritize the identified topics by the working group members (part 3: prioritization). The results were analysed descriptively. RESULTS: Among the 41 participants, only 23% considered the standards to be sufficient, and only 55% found their application in the development of information to be easy or rather easy. The needs assessment and workshop (n=46) helped to identify various areas of action. With regard to the application of the standards, the following challenges were identified: lack of user orientation, content gaps, methods and risk communication. Gaps in the standards were identified regarding formats, content, and the connection to healthcare provision. For the advancement of the standards ideas for additional content, stakeholder involvement, and improvement of the usability of the standards were identified. In the prioritization survey, the topic areas, "presenting benefits and harms" and "content beyond treatments (in particular, diagnostics and prognosis)" were considered to be the most important (n=36). DISCUSSION: Among members of the working group for patient information and involvement of the German Network for Evidence-based Medicine, a high demand has been identified for the further development of standards for creating evidence-based health information. In addition to content development, the integration of existing documents and tools should also be considered, including products issued by other institutions. The success of advancing the standards also depends on improving their applicability - for example through an attractive online platform. The results are limited by the sample which only included members of the EbM Network's patient information and participation working group and a limited response rate. CONCLUSIONS: The needs assessment showed that the currently established standards and recommendations for the development of evidence-based health information in the German-speaking regions represent important cornerstones but need to be expanded to answer more practice-oriented questions. The challenges and proposed solutions stated by the participants can help further develop the standards. The prioritization can be used to set priorities for the development of the standards, guide the order of possible work packages and allocate resources.

The Turkish version of the Camberwell Assessment of Need for the Elderly: A validity and reliability study.

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.

Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness.

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.

Validation of the German version of the needs assessment tool: progressive disease-heart failure.

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.

Preparing for the NASH Epidemic: A Call to Action.

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.

Not just carriers: experiences of X-linked female heterozygotes.

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.

Clinical Unmet Needs in the Treatment of Adrenal Crisis: Importance of the Patient's Perspective.

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.

Education in developing countries and reducing maternal mortality: a forgotten piece of the puzzle?

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.

The Nairobi Summit and Reproductive Justice: Unmet Needs for People with Infertility.

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.

Needs assessment of current palliative care education in U.S. hematology/oncology fellowship programs.

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.

An actionable needs assessment for adolescents and young adults with cancer: the AYA Needs Assessment & Service Bridge (NA-SB).

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.

Using confirmatory factor analysis and Rasch analysis to examine the dimensionality of The Patient Assessment of Care for Chronic Illness Care (PACIC).

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.

Family caregivers' support needs during allo-HSCT-a longitudinal study.

PURPOSE: The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome. METHODS: This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later. RESULTS: The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up. CONCLUSION: The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

High-need high-cost patients: A Concept Analysis.

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.

French annual national observational study of 2015 outpatient and inpatient healthcare utilization by approximately half a million patients with previous heart failure diagnosis.

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.

Prevalence and correlates of unmet palliative care needs in dyads of Chinese patients with advanced cancer and their informal caregivers: a cross-sectional survey.

OBJECTIVES: To examine palliative care needs of advanced cancer patients and their informal caregivers and correlates of their needs within Chinese context. METHODS: This was a cross-sectional survey conducted in two study sites in Mainland China. Patients and caregivers were recruited in dyads. Patients completed the following questionnaires: Problems and Needs in Palliative Care-short version, Hospital Anxiety and Depression Scale (HADS), Edmonton Symptom Assessment Scale (ESAS), Medical Outcomes Study-Social Support Survey (MOS-SSS), Brief Coping Orientation to Problems Experienced Scale (Brief-COPE), and Quality-of-Life Questionnaire Core 15-Palliative Care Scale. Questionnaires for caregivers were as follows: Comprehensive Needs Assessment Tool in Cancer for Caregivers, HADS, ESAS, MOS-SSS, Brief-COPE, and Caregiver Quality of Life Index-Cancer. All of the outcome variables were selected based on a conceptual framework of palliative care needs assessment. RESULTS: Four hundred nineteen patient-caregiver dyads completed this survey. Patients' unmet palliative care needs were mainly related to financial (85.2%), informational (82.3%), physical (pain) (69.7%), and psychological (64.9%) domains. Caregivers' commonly reported unmet needs mainly focused on the domains of healthcare staff (95.0%), information (92.1%), and hospital facilities and services (90.5%). Patients' greater severity of symptom distress, presence of anxiety and/or depression, use of coping strategies particularly the less use of problem-focused coping, and caregivers' poorer quality of life were identified as key negative predictors of the needs of both patients and caregivers (p < 0.05). CONCLUSIONS: Both patients and caregivers had context-bounded palliative care needs. In addition to increasing the amount of external asistance, more emphasis should be placed on screening for physical and psychological distress, the use of coping strategies, and the well-being of caregivers to help identify those in need for more clinical attention and specific interventions.

Unmet needs for relapsed or refractory Wilms tumour: Mapping the molecular features, exploring organoids and designing early phase trials - A collaborative SIOP-RTSG, COG and ITCC session at the first SIOPE meeting.

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.