The development and validation of a needs assessment tool for use with YOUng adult survivors of a CentrAl Nervous system tumor (YOU-CAN).

Background: Adolescent and young adult (AYA) survivors of a central nervous system (CNS) tumor represent a vulnerable group who can experience: social isolation, low rates of employment, and achieving independence can be compromised, leading to poorer quality of life compared with survivors of other cancer types. The aim of this study is to develop and evaluate the validity of a needs assessment tool (NAT) for AYA survivors of a CNS tumor. Methods: Items generated using data from 29 qualitative studies and cognitive interviews (n = 8) produced NAT V1.1 (49 items). 128 of 316 eligible participants attending neuro-oncology clinics at 4 NHS sites between June 2022 and March 2023 completed the NAT V1.1 to allow for item reduction and refinement and to evaluate reliability and validity. A pilot study (n = 6) using YOU-CAN in routine follow-up concluded the study. Results: Hierarchical analysis and Rasch analysis identified 18- and 15-items for removal, respectively. YOU-CAN, comprised of the remaining 16 items, demonstrates excellent test-retest reliability (intra-class correlation coefficient, 0.901, n = 40) and sufficient correlation with the European Quality of Life questionnaire and Supportive Care Needs Survey (Pearson r = 0.433 and 0.590, respectively). Pilot testing showed YOU-CAN triggered discussions of unmet needs in consultations and highlighted the importance of multidisciplinary support. Conclusions: YOU-CAN is a valid and reliable instrument containing items related to concerns about physical and emotional health; family and relationships; self-acceptance; and independence. Future efforts should examine YOU-CAN's feasibility, and develop guidance for managing unmet needs. Routine use of YOU-CAN may improve the identification of otherwise undiscussed unmet needs and opportunities to deliver personalized support.

Measurement Properties of Patient-Reported Outcome Measures for Adolescent and Young Adult Survivors of a Central Nervous System Tumor: A Systematic Review.

Purpose: To identify and evaluate patient-reported outcome measures (PROMs) for assessing survivorship-related concepts for adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors. Methods: We searched five electronic databases. Two researchers independently screened all titles for inclusion and used consensus-based standards for the selection of health measurement instruments (COSMIN) guidance to grade the quality of evidence for each measurement property. Results: Four studies met eligibility criteria: single-item pain thermometer; single-item fatigue thermometer; 37-item pediatric functional assessment of cancer therapy-brain tumor survivors, measuring quality of life; and 12-item Perceived Barriers Scale to assess barriers to employment. The Perceived Barrier Scale showed high-quality evidence for internal consistency and moderate quality evidence for construct and structural validity. Evidence for the measurement properties of the other PROMs was low-to-moderate quality. Conclusion: We found one PROM with sufficient evidence for good measurement properties to support its use. This warrants development and evaluation of further PROMs to inform ongoing supportive care for this population. Implications for Cancer Survivors: The Perceived Barriers Scale is sufficiently validated and could be considered to guide support for AYA survivors of CNS tumors to achieve their employment goals.

Experiences and Unmet Needs of Adolescent and Young Adult Survivors of a Brain Tumor (Aged 15-39 Years): A Systematic Review and Meta-ethnography.

BACKGROUND: Brain tumors account for 15% of all adolescent and young adult cancers, and survivors are at risk of ongoing late effects that can severely impact their ability to reach independence. Despite follow-up initiatives advocating a personalized approach, survivors continue to experience ongoing sequelae. A better understanding of the survivorship experience is required to ensure services are able to deliver personalized support. OBJECTIVE: The aim of this systematic search and meta-ethnography was to identify and synthesize qualitative studies to better understand the experiences, perspectives, and needs of adolescent and young adult brain tumor survivors. METHODS: Five databases were searched using predefined criteria, studies were independently screened by two researchers, and those meeting inclusion criteria were synthesized. RESULTS: Twenty-seven studies were synthesized, generating 2 main themes, each with subthemes: (1) individual factors impacting resilience, namely, positive coping styles, managing emotions, and family functioning, and (2) cancer-related factors that challenge the individual, namely, living with societal expectations and barriers to coping. CONCLUSION: The conceptual framework illustrates the challenges and resilience of survivors along the continuum from adolescence to adulthood, reflecting the needs of this age group in 1 model, despite it being a time of rapid growth. The lack of awareness of potential physical and emotional late effects challenges individual resilience, which is further challenged when significant milestones cannot be reached. IMPLICATIONS FOR PRACTICE: There is a role for follow-up services to identify and address unmet needs, provide better information to equip survivors to manage late effects, and support families, particularly those who underwent more intensive treatment.

Patient-reported outcome (PRO) instruments used in patients undergoing adoptive cell therapy (ACT) for the treatment of cancer: a systematic review.

INTRODUCTION: Adoptive cell therapy (ACT) is a rapidly evolving field. Patient-reported outcomes (PROs) allow patients to report the impact of treatment on their quality of life during and after treatment. The systematic review aims to characterise the breadth of PROs utilised in ACT cancer care and provide guidance for the use of PROs in this patient population in the future. METHODS: A systematic search was conducted (MEDLINE, PsycINFO, Embase and CINAHL) in August 2021 by two reviewers. Search terms covered the following: "adoptive cell therapy", "patient-reported outcomes" and "cancer". Studies were included if they used a PRO measure to report the impact of ACT. The methodological quality of PROs was assessed. Forward and backward reference searching was conducted of any relevant papers. A quality grading scale was applied based on Cochrane and Revenson criteria for classification of high-quality studies. Key data from the studies and the included PROs was extracted by two researchers and tabulated. RESULTS: One-hundred nine papers were identified; 11 papers were included. The majority of studies were single-arm trials or observational studies. Twenty-two different PROs were identified; none was ACT specific. The PROMIS-29 and EQ-5D were most commonly used. Few studies collected PRO data in the first 1-2 weeks. Four studies followed patients up for over a year, and a further four studies followed patients for approximately 3 months. DISCUSSION: None of the PROs identified have been designed specifically for ACT. Appropriateness of existing instruments should be considered. It should be considered whether it is appropriate to collect data more frequently in the acute stage and then less frequently during follow-up. It should be considered if one tool is suitable at all time points or if the tool should be adapted depending on time since treatment. More research is needed to identify the exact timings of PRO assessments, and qualitative work with patients is needed to determine the most important issues for them throughout the treatment and follow-up.

Examining the Experiences and Support Needs of Bereaved Parents After the Death of a Child During Early Adulthood From Cancer.

BACKGROUND: Parents experience unique grief, which may be experienced differently by mothers and fathers. A lack of knowledge about the particular bereavement experiences of the parents of young adults exists. OBJECTIVE: The aim of this study was to investigate experiences and support needs of parents after the death of a child (aged 16-29 years) from cancer, exploring changes over time. METHODS: The study used a Charmazian constructivist grounded theory approach. Semistructured interviews were conducted with 11 parents (7 mothers and 4 fathers) purposefully sampled and bereaved between 15 months and 7 years. Data were analyzed inductively using the constant comparative approach for category development. RESULTS: "Living with continual loss" emerged as the core category central to parents' experiences of bereavement. Feelings of continual loss were compounded by parents' lack of information ("grieving in the dark") and a perceived lack of understanding from families and friends ("grieving alone"). Parents discovered strategies to manage the feeling of loss: "changing routines," "preserving the meaning of home," "maintaining memories and presence," and "sharing experiences." CONCLUSIONS: This is the first study focusing solely on the experiences and support needs of bereaved parents of young adults who have died of cancer. Parents live with a continual sense of loss irrespective of the length of bereavement, and a lack of bereavement information and empathetic emotional support can exist. IMPLICATIONS FOR PRACTICE: The need for improved information giving and development of peer support for bereaved parents has been identified. Cancer centers have a continuing role in developing and providing this support.

Mapping the cancer patient information landscape: A comparative analysis of patient groups across Europe and North America.

AIM: Little is known about how patient groups provide information for patients. We invited 838 patient groups from Europe and North America to participate in an online survey. METHODS: The survey covered: (i) availability, accessibility and quality of information provided; (ii) methods by which patient groups communicate; (iii) ways in which patient groups acquire information and confirm its veracity/accuracy; (iv) how people access information online. RESULTS: European patient groups were significantly less effective in providing medical-related information than their North American counterparts in: clinical trials, potential causes of cancer, medical research, diagnosis/screening, symptoms, treatments (all p < 0.0001); Recommendations of best practice/care (p < 0.03), healthcare services(p = 0.029) and complimentary medicine (p = 0.01). Clinical trials (p = 0.0006), medical research (p = 0.006) and diagnosis/screening (p = 0.0024) were also areas where North American patients were more likely to require medical-related information. Similar patterns emerged for non-medical information with nutrition (<0.0001), watchful waiting (p = 0.0003), self-management of care (p = 0.0003), prevention (p = 0.002) and emotional issues (p = 0.016) being less effectively communicated by European patient groups. Nutrition was also an area where North American patients were more likely to require non-medical-related information. The main barriers in accessing online information which showed differences between European and North American patients were: perceived lack of need, mainly due to faith in their doctors (p = 0.0001); limited access to the internet (p = 0.0005), limited computer skills (p = 0.02); and lower income (p = 0.027). CONCLUSION: These results emphasise the more mature nature of cancer patient engagement/information provision in North America, providing valuable insights and guidance to inform development of more robust and effective cancer patient information communication platforms in Europe.

The European Cancer Patient's Bill of Rights, update and implementation 2016.

In this implementation phase of the European Cancer Patient's Bill of Rights (BoR), we confirm the following three patient-centred principles that underpin this initiative:The right of every European citizen to receive the most accurate information and to be proactively involved in his/her care.The right of every European citizen to optimal and timely access to a diagnosis and to appropriate specialised care, underpinned by research and innovation.The right of every European citizen to receive care in health systems that ensure the best possible cancer prevention, the earliest possible diagnosis of their cancer, improved outcomes, patient rehabilitation, best quality of life and affordable health care. The key aspects of working towards implementing the BoR are:Agree our high-level goal. The vision of 70% long-term survival for patients with cancer in 2035, promoting cancer prevention and cancer control and the associated progress in ensuring good patient experience and quality of life.Establish the major mechanisms to underpin its delivery. (1) The systematic and rigorous sharing of best practice between and across European cancer healthcare systems and (2) the active promotion of Research and Innovation focused on improving outcomes; (3) Improving access to new and established cancer care by sharing best practice in the development, approval, procurement and reimbursement of cancer diagnostic tests and treatments.Work with other organisations to bring into being a Europe based centre that will (1) systematically identify, evaluate and validate and disseminate best practice in cancer management for the different countries and regions and (2) promote Research and Innovation and its translation to maximise its impact to improve outcomes.

Clinical trial designs for rare diseases: studies developed and discussed by the International Rare Cancers Initiative.

BACKGROUND: The past three decades have seen rapid improvements in the diagnosis and treatment of most cancers and the most important contributor has been research. Progress in rare cancers has been slower, not least because of the challenges of undertaking research. SETTINGS: The International Rare Cancers Initiative (IRCI) is a partnership which aims to stimulate and facilitate the development of international clinical trials for patients with rare cancers. It is focused on interventional--usually randomized--clinical trials with the clear goal of improving outcomes for patients. The key challenges are organisational and methodological. A multi-disciplinary workshop to review the methods used in ICRI portfolio trials was held in Amsterdam in September 2013. Other as-yet unrealised methods were also discussed. RESULTS: The IRCI trials are each presented to exemplify possible approaches to designing credible trials in rare cancers. Researchers may consider these for use in future trials and understand the choices made for each design. INTERPRETATION: Trials can be designed using a wide array of possibilities. There is no 'one size fits all' solution. In order to make progress in the rare diseases, decisions to change practice will have to be based on less direct evidence from clinical trials than in more common diseases.

Homelessness as culture: How transcultural nursing theory can assist caring for the homeless.

The concepts of culture and homelessness are both complex and contested. This paper examines homelessness through the lens of transcultural nursing theory, increasing understanding of both homelessness and transcultural theory. We argue that homelessness can be usefully conceptualised as a culture and that the application of transcultural theory to caring for homeless people will add further to the utility of these theories. The application of transcultural theory can add to the repertoire of skills the nurse needs to care for not only homeless clients, but, for a diverse range of client groups.

Exploring the development of a cultural care framework for European caring science.

The aim of this paper is to discuss the development of a cultural care framework that seeks to inform and embrace the philosophical ideals of caring science. Following a review of the literature that identified a lack of evidence of an explicit relationship between caring science and cultural care, a number of well-established transcultural care frameworks were reviewed. Our purpose was to select one that would resonate with underpinning philosophical values of caring science and that drew on criteria generated by the European Academy of Caring Science members. A modified framework based on the work of Giger and Davidhizar was developed as it embraced many of the values such as humanism that are core to caring science practice. The proposed caring science framework integrates determinants of cultural lifeworld-led care and seeks to provide clear directions for humanizing the care of individuals. The framework is offered to open up debate and act as a platform for further academic enquiry.

Addressing the health needs of the homeless.

Several authors have alluded to the complex health needs of the homeless population in the UK. The correlation between homelessness and a wide range of health problems has been explored in the literature. This paper presents a literature review exploring the biological, psychosocial and sexual health needs of single homeless people. The relationship between health and homelessness is analysed in relation to theories of health inequalities, which suggest that being homeless may be both a cause and a consequence of ill health. The contemporary nurse can play a vital role in helping to overcome the barriers that homeless people face when accessing health services. This paper explores the skills and approaches that nurses in a wide variety of settings can employ in addressing the health issues of homeless clients.

An evaluation of a European teacher exchange programme.

This longitudinal study evaluated a European teacher exchange programme within a UK School of Nursing and Midwifery. A cross case study design was employed over a three year period. A range of data methods were used which gave a clear, detailed and rich picture of the exchange experience. Overall analysis of the data generated two key themes, namely that of value and role identity. The study highlighted factors which were deemed to have positive and negative influences on the teacher exchange experience. It is concluded that a teacher exchange programme is of value to the School, by aiding personal and professional development and internationalisation. Recommendations from the study are included in the paper.

The shifting foundations of nursing.

In this paper we argue that the concerns generated by the development of Foundation Degrees and the Assistant and Associate Practitioner roles have rekindled some of the unresolved debates regarding the status and identity of nursing and nurses. Through the application of the sociological theories of professionalisation and nostalgia we have identified the shifting and unresolved nature of nursing. We argue that these theories continue to have resonance in the current climate of change and 'upskilling' of the health care workforce and argue, that the shifts illuminated are perhaps so significant as to demonstrate that we have entered a post-nursing era.

Tales of sociology and the nursing curriculum: revisiting the debates.

The relationship between nursing and sociology has been extensively debated for more than two decades [Cox, C.A., 1979. Who cares? Nursing and sociology: the development of a symbiotic relationship. Journal of Advanced Nursing 4, 237-252; Cooke, H., 1993. Why teach sociology? Nurse Education Today 13, (3) 210-216; Sharpe, K., 1994. Sociology and the nursing curriculum: a note of caution. Journal of Advanced Nursing 20, (2) 391-395; Sharpe, K., 1995. Why indeed should we teach sociology? A response to Hannah Cooke. Nurse Education Today 15, (1) 52-55; Sharpe, K., 1996. Feedback - sociology and the nursing curriculum: a reply to Sam Porter. Journal of Advanced Nursing 23, (7) 1275-1278; Balsamo, D., Martin, S.I., 1995a. Developing the sociology of health in nurse education: towards a more critical curriculum. Part 1. Andragogy and sociology in Project 2000. Nurse Education Today 15, 427-432; Balsamo, D., Martin, S.I., 1995b. Developing the sociology of health in nurse education: towards a more critical curriculum. Part 2. Linking methodology and epistemology. Nurse Education Today 15, 427-432; Porter, S., 1995. Sociology and the nursing curriculum: a defence. Journal of Advanced Nursing 21, (6) 1130-1135; Porter, S., 1996. Why teach sociology? A contribution to the debate. Nurse Education Today, 16, 170-174; Porter, S., 1997. Sociology and the nursing curriculum: a further comment. Journal of Advanced Nursing 26, (1) 214-218; Porter, S., 1998. Social Theory and Nursing Practice. Macmillan, Basingstoke; Corlett, J., 2000. The perceptions of nurse teacher, student nurses and preceptors of the theory-practice gap in nurse education. Nurse Education Today 20, 499-505; Allen, D., 2001. Review article: nursing and sociology: an uneasy marriage?. Sociology of Health and Illness 23, (3) 386-396; Pinikahana, J., 2003. Role of sociology within the nursing enterprise: some reflections on the unfinished debate. Nursing and health Sciences 5, (2) 175-180; Holland, K., 2004. Sociology and the nursing curriculum; editorial. Nurse Education in Practice 4, 81-82; Mowforth, G., Harrison, J., Morris, M., 2005. An investigation into adult nursing students' experience of the relevance and application of behavioural sciences (biology, psychology and sociology) across two different curricula. Nurse Education Today 25, 41-48]. Much attention has been given to the role, utility and value of sociology mostly within pre-registration but also post-registration nursing curricula. Through an initial analysis of a series of letters appearing in The Nursing Times over a 12 week period in 2004, and using an analytical framework of four tales (realist, critical, deconstructive and reflexive) we revisit this relationship. Unlike previous debates our argument is that this relationship is more usefully viewed as emblematic of the legitimation crisis inherent in all modern projects. We argue that in order to move beyond the 'utility' discussion, an interrogation of the knowledge claims of both nursing and sociology is required.

Troponin testing for chest pain in primary healthcare: a survey of its use by general practitioners in New Zealand.

AIM: Serum troponin is now the preferred biochemical marker for myocardial infarction. The aim of this study was to investigate general practitioner (GP) knowledge and use of serum troponin testing in primary healthcare. METHODS: We sent a postal survey about troponin testing to all GPs in the Wellington region (n=299) of New Zealand. RESULTS: Of the 299 surveys sent, 216 replies were received (72%). 54% (n=115) of participants were male and 58% (n=113) in full time practice. 92% were using troponin tests (58% monthly). ECG (79%) and serum troponin (78%) were the tests most commonly used to triage patients with chest pain. GPs had excellent knowledge of false negative scenarios (84% correctly identified false negative if test undertaken within 6 hours) and less knowledge of false positive scenarios (39% answered 'Don't know'). CONCLUSIONS: The majority of GPs use serum troponin tests, and have sufficient knowledge of the test for use in a primary care setting. Most GPs use the tests appropriately, although a small proportion of doctors may defer rapid admission to hospital while waiting for the test result (7%) or manage the patient within general practice (5%) in those patients who have chest pain considered 'possibly' due to myocardial infarction.

Troponin testing for chest pain in primary healthcare: a New Zealand audit.

AIM: Serum troponin is a widely used biomarker for the diagnosis of myocardial infarction (MI). The aim of this audit was to document the actual clinical circumstances when serum troponin tests are used to assess chest pain in primary healthcare. METHODS: We undertook an audit of general practitioner (GP) serum troponin requests made to community laboratories in the Wellington region over a 5-week period in 2004. RESULTS: 433 tests were ordered by 201 GPs and 10 tests were positive. We faxed 396 questionnaires to identifiable GPs requesting the tests and received 292 replies (74%). The time between initial onset of symptoms and troponin testing was biphasically distributed with peaks at 7-12 hours and 3.5 days. An ECG was performed in less than 50% of the cases. The GP's estimate of the likelihood of their patient's symptoms being due to MI was strongly influenced by both positive and negative test results. Patients were referred acutely to hospital on less than 5% of occasions. CONCLUSIONS: GPs used troponin testing mostly for late presentations some days after chest pain, to 'rule-out' MI. When used acutely, referral for admission occasionally awaited the troponin test result.

The internationalisation of the nursing curriculum.

This paper explores the complexities of the internationalisation of the nursing curriculum. It discusses one aspect of the international activity within a British University, a short student exchange programme and how this facilitates personal and professional learning. The paper focuses on the educational, professional, geo-political and philosophical ideas that influenced the development of these exchanges. The process of facilitating cultural and professional learning following Campinha-Bacote's model (1999) [Campinha-Bacote, J., 1999. A model and instrument for addressing cultural competence in health care. Journal of Nurse Education 38 (5) 203-7] for developing cultural competence is applied and discussed.