Adolescents and young adults (AYAs) with cancer are a distinct group whose needs have been poorly addressed within health care systems. This imbalance is being addressed in some countries, and this growing specialty is now receiving the recognition it requires in order to develop further. This article discusses some of the psychosocial issues of AYAs and, with reference to the phrase of sex, drugs, and rock and roll, highlights the various rites of passage that young people experience. It also discusses how services and professionals can work alongside AYAs, enabling them to feel a part of the process by providing age-appropriate environment and expertise.
Background and Objectives This study explored variations in the clinical manifestations of intravascular lymphoma (IVL) on the bases of the association with hemophagocytosis and the country where the diagnosis was made. Design and Methods The clinical features of 50 Western patients with IVL were compared with those of 123 patients with IVL diagnosed in Eastern countries (87 diagnosed in Japan and 36 in other Asian countries), previously reported in English literature, and collected by an electronic bibliographic search. Results Hemophagocytosis was absent in Western patients, but reported in 38 (44%) Japanese patients (p=0.00001) and in seven (19%) patients from other Asian countries (p=0.002). No clinical differences were evident between patients with hemophagocytosis-negative IVL diagnosed in Western countries, Japan and other Asian Countries. Conversely, Japanese and non-Japanese patients with hemophagocytosisrelated IVL more frequently had stage IV disease, fever, hepato-splenic involvement, marrow infiltration, dyspnea, anemia, and thrombocytopenia, and rarely exhibited cutaneous or central nervous system involvement. Lymph node and peripheral blood involvement was uncommon in all subgroups. In Western patients, anthracycline-based chemotherapy was associated with a 52% remission rate, and a 2-year overall survival of 46%. Interpretation and Conclusions The clinical features of IVL vary according to the association with hemophagocytosis, regardless of the country in which the diagnosis is made. Western, Japanese and other Asian patients with hemophagocytosis-negative IVL display similar clinical characteristics and should be considered as having classical IVL. Patients with hemophagocytosis-related IVL show significantly different clinical features. Both forms have a poor prognosis. Extensive molecular studies are needed to explore whether these clinical differences might reflect discordant biological entities within IVL
Understanding the reproductive and fertility concerns of teenagers and young adults with cancer (TYA) is one aspect of comprehensive age appropriate care. However, limited options for fertility preservation, coupled with vague policy recommendations, give rise to variations in information-sharing between health care professionals and TYAs, particularly as it involves sensitive discussions regarding the short- and long-term effects of cancer and treatments on fertility and reproduction. This paper presents findings from a wider evaluation at a specialist unit for TYAs with cancer. Forty people participated in semi-structured interviews, including 20 young people, parents and partners. Young people were between 2 months and 4 years from finishing treatment. Most young people received mixed levels of information on fertility and counselling before treatment. Diagnosis in the early teens meant how, and from whom, young people received information varied. Young women tended to receive incomplete information. The majority of young people were unaware of their fertility status after treatment had finished. Findings point to the inherent challenges that exist in ensuring young people aged between 13 and 25 years receive comprehensive information on their fertility and potential risk, as well as advice on how to determine their fertility status after treatment has finished.
Over 14,000 patients aged 15-24 are estimated to be diagnosed with cancer in the EU each year. Teenagers and Young Adults (TYA) often fall down gaps between children's and adults cancer services. The specific challenges of providing optimal care to them are described, but we present a summary of recent progress. Progress to overcome these challenges is happening at different rates across Europe. We summarise the European national projects in this field but more recently we have seen the beginnings of European co-ordination. Within the EU FP7 European Network for Cancer Research in Children and Adolescents program (ENCCA) a specific European Network for Teenagers and Young Adults with Cancer (ENTYAC) has held a series of scientific meetings, including professionals, patients and caregivers. This group has proposed unanswered research questions and agreed key features of a high quality service that can improve outcomes for TYA with cancer, including the primacy of collaboration between adult and pediatric services to eliminate the gap in the management of TYA with cancer.
ObjectivesTo conduct a UK-wide survey of young people who have experienced cancer, carers and professionals, to identify and prioritise research questions to inform decisions of research funders and support the case for research with this unique cancer population.DesignJames Lind Alliance Priority Setting Partnership.SettingUK health service and community.MethodsA steering group oversaw the initiative and partner organisations were recruited. Unanswered questions were collected in an online survey. Evidence searching verified uncertainties. An interim survey was used to rank questions prior to a final prioritisation workshop.ParticipantsYoung people aged 13–24 years with a current or previous cancer diagnosis, their families, friends, partners and professionals who work with this population.ResultsTwo hundred and ninety-two respondents submitted 855 potential questions. Following a refining process and removal of ‘out of scope’ questions, 208 unique questions remained. Systematic evidence checking identified seven answered questions and 16 were the subject of ongoing studies. The interim survey was completed by 174 participants. The top 30 questions were prioritised at a workshop attended by 25 young people, parents and multidisciplinary professionals. The top three priorities are: (1) What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? (2) What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? (3) What are the best strategies to improve access to clinical trials? The remaining questions reflect the complete cancer pathway: new therapies, life after cancer, support, education/employment, relapse and end-of-life care.ConclusionsWe have identified shared research priorities for young people with cancer using a rigorous, person-centred approach involving stakeholders typically not involved in setting the research agenda. The breadth of priorities suggest future research should focus on holistic and psychosocial care delivery as well as traditional drug/biology research.
Aims: To determine whether acute dacryocystitis complicated by abscess formation can be successfully treated using laser assisted endonasal dacryocystorhinostomy. Methods: A protocol was adopted for the management of acute dacryocystitis presenting to an ophthalmology department. All patients were assessed jointly by an ophthalmologist and otolaryngologist for their suitability for primary internal drainage via a nasal endoscopic approach. All suitable patients during the study period August 1999 to November 2000 were managed by intravenous antibiotics and holmium:YAG laser dacryocystorhinostomy. Results: Nine patients were studied (mean age 72 years (range 38-82 years), three men, six women). ?A history of chronic epiphora was found in 78% of patients, and recurrent nasolacrimal infections in the ?same 78%. Resolution of symptoms and signs of acute dacryocystitis occurred in all nine patients. ?No recurrence of acute dacryocystitis occurred during the median follow up period of 11 months ?(range 6-31 months). Ostium patency defined as the absence of epiphora and the observation of irrigated lacrimal fluorescein at the ostium was achieved in 67% of patients. Epiphora recurred in 33% of cases. Conclusion: Laser assisted endonasal dacryocystorhinostomy is an effective primary treatment in cases of acute dacryocystitis complicated by abscess formation. In addition, pre-existing symptoms of epiphora and recurrent nasolacrimal infections are relieved in the majority of patients.
Objective Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment‐related symptoms cause short and long‐term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies to manage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site. Methods Using the principles of virtual ethnography and watching videos on a social media site we gathered data from young people describing their cancer experience. Qualitative content analysis was employed to analyse and interpret the narrative from longitudinal ‘video diaries’ by 18 young people equating to 156 films and 27 h and 49 min of recording. Themes were described then organized and clustered into typologies grouping commonalities across themes. Results Four typologies emerged reflective of the cancer trajectory: treatment and relenting side effects, rehabilitation and getting on with life, relapse, facing more treatment and coming to terms with dying. Conclusions This study confirms the need for young people to strive towards normality and creating a new normal, even where uncertainty prevailed. Strategies young people used to gain mastery over their illness and the types of stories they choose to tell provide the focus of the main narrative. Social Media sites can be examined as a source of data, to supplement or instead of more traditional routes of data collection known to be practically challenging with this population. Copyright © 2016 John Wiley & Sons, Ltd.
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