Adolescents with cancer

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Quality of life of adolescents with cancer: family risks and resources

Quality of life of adolescents with cancer: family risks and resources

A thorough understanding of cancer treatment experi- ences [16] can guide future treatment efforts to improve adolescent QOL. Based on findings of the current study, and because disease complications and treatment inten- sity are rarely modifiable, family function is a potential target of intervention to improve the social ecology of adolescents with cancer and related QOL outcomes. Despite the Children's Oncology Group's expectation to include patient-reported outcomes (i.e. QOL) in all their research protocols [10], few interventions that address QOL have been tested. Barrera and colleagues [5] provide an initial encouraging report on groups for adolescents with cancer designed to address psychosocial and devel- opmental challenges faced by these patients, yet no other published family interventions for adolescents with can- cer were identified. With identified, modifiable family correlates of adolescent QOL, the development of family- based interventions to improve adolescent QOL should be prioritized.
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Clinical Trial Enrollment Among Adolescents With Cancer: Supplement Overview

Clinical Trial Enrollment Among Adolescents With Cancer: Supplement Overview

On the basis of discussion from the fi rst 2 webinars, webinar 3, led by work- group chair Archie Bleyer, focused on identifying key barriers to clinical trial enrollment. One key barrier was that adolescents are not referred to institu- tions at which clinical trials are offered. A second barrier is the limited number of clinical trials available for adolescents with cancer. Even if adolescents are re- ferred to appropriate treatment settings, there may not be a trial available for those patients and increasing the num- ber of trials is dif fi cult. Psychosocial barriers are a third key obstacle to in- creasing adolescent enrollment in clini- cal trials. Addressing these barriers will require increased awareness of these issues among referring physicians, closer collaboration between physicians, and increased research efforts. Efforts to increase awareness about survival trends, empoweradolescents and families about treatment choices, and support local efforts focused on AYA cancers are also needed.
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Understanding and Addressing the Lack of Clinical Trial Enrollment Among Adolescents With Cancer

Understanding and Addressing the Lack of Clinical Trial Enrollment Among Adolescents With Cancer

Despite overall improvement in survival, morbidity, and quality of life of US patients with cancer, this progress is less prevalent in the popu- lation of adolescent and young adult patients with cancer, including those between the ages of 15 and 19 years. Evidence suggests that participation in clinical trials is associated with better survival out- comes among children and adolescents with cancer; however, ado- lescents have lower clinical trial participation rates compared with younger age cohorts. To better understand the unique concerns among adolescent patients with cancer, the Division of Cancer Pre- vention and Control at the Centers for Disease Control and Prevention convened a workgroup of researchers and health care providers in the fi eld of adolescent and young adult oncology and cancer survivor- ship to examine the barriers and challenges limiting the participation of adolescents in clinical trials and to de fi ne ways to improve upon these concerns. This article summarizes the activities of the workgroup and their suggestions for enhanced accrual. Pediatrics 2014;133:S98 – S103
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Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study

Decision-making on therapeutic futility in Mexican adolescents with cancer: a qualitative study

Thirteen paediatric oncologists who worked the morning shift and were tenured at one of the three medical centres (see next section) participated in this study along with 13 parents of 13 adolescents with cancer. Seven of these ado- lescents had already died; for the remaining six, who were alive at the time of the study, their parents had been already informed of the therapeutic futility. Also participating were six adolescents; four of them were the children of this group of parents. Two parents refused to allow their children to participate in the research, stating that their children were not aware of their terminal prognosis, and that they desired to protect their children from po- tential information that might be harmful to them. Based on the evolution of the analysis of the informa- tion generated, it was necessary to recruit two more adolescents, whose cancer, according to their attending oncologists, was incurable or in terminal phase. Pur- posive sampling was used [19], with the sample size de- fined by theoretical saturation, according to the criteria of Sandelowski [20]. In brief, following those criteria, the sampling was stopped when the data became repeti- tive or redundant and new analyses only confirmed what had already been established.
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Palliative nursing care for children and adolescents with cancer

Palliative nursing care for children and adolescents with cancer

Abstract: Pediatric palliative care aims to enhance life and decrease suffering of children and adolescents living with life-threatening conditions and their loved ones. Oncology nurses are instrumental in providing palliative care to pediatric oncology populations. This paper describes pediatric palliative care and provides an overview of literature related to the physical, psycho- logical, social, and spiritual domains of palliative nursing care for children and adolescents with cancer. Nurses can provide optimal palliative care by accounting for children’s understanding of death, encouraging early initiation of palliative care services, and improving utilization of pediatric palliative care in cancer settings. Specific roles of registered nurses and advanced prac- tice nurses in pediatric palliative care will be addressed. Recommendations for future research are made to further advance the science of pediatric palliative care and decrease suffering for children and teens with cancer.
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Treatment Setting, Clinical Trial Enrollment, and Subsequent Outcomes Among Adolescents With Cancer: A Literature Review

Treatment Setting, Clinical Trial Enrollment, and Subsequent Outcomes Among Adolescents With Cancer: A Literature Review

Increasing referral to pediatric centers, when appropriate, is needed to in- crease enrollment of adolescents in clinical trials. Because it may be more appropriate for adolescents with cer- tain types of cancer, such as melanoma and germ cell tumors, to be treated at adult institutions for medical reasons, it is also important to increase enroll- ment for adolescents with cancer who are seen in adult and community set- tings. This increase may be achieved through collaboration between pediat- ric and adult institutions and oncolo- gists. There is also a need for uni fi ed clinical trial protocols for adolescents that can be followed by both pediatric and adult oncologists in national co- operative groups. Increased collaboration
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Keep on Striving: The Impact of Psychosocial Support on Jordanian Adolescents with Cancer

Keep on Striving: The Impact of Psychosocial Support on Jordanian Adolescents with Cancer

In addition, support provided by the health care team was acknowledged by participants as helpful. Similar studies confirmed the importance of establishing rapport and therapeutic relationships, between patients and their health care providers [22] [26] [27]. Health care providers can help adolescents and children with cancer to cope by providing them with information about cancer and its treatment. This will contribute positively in help- ing patients to understand their disease and enhance their feeling of control of the disease process [26]-[28]. In- deed, nurses play a key role in encouraging social support as it has been proven that getting support from friends, family, and health care providers is associated with less depression and anxiety [29]. Jordanian adolescents strongly appreciated all the leisure activities and facilities in the hospital as sources of support and entertainment. These include the presence of playrooms and educational classrooms. Grinyer (2007) affirmed that an age-app- ropriate environment is effective in helping young patients engage in their social activities such as playing music and creating artwork with their peers [30]. Other researchers encouraged the implementation of therapeutic play programs for adolescents with cancer during hospitalization as well as integrating them in leisure activities. These activities can improve the adaptation level and alleviate tension and stress which will lead to better psy- chosocial adjustment as reported by Enskar et al. and Li et al. [20] [31]. Therefore, the hospital administrators, and the pediatric oncology staff are encouraged to develop age specific cancer units that contribute to less stress and better coping.
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Measurement properties of instruments to assess pain in children and adolescents with cancer: a systematic review protocol

Measurement properties of instruments to assess pain in children and adolescents with cancer: a systematic review protocol

extremely broad, healthcare professionals often seek guidance on how to optimally assess and manage the undesirable effects of anti-cancer therapy [7]. To provide this guidance, the project “Towards evidence-based guidelines in childhood cancer” was initiated in 2014 [8]. As the first step in this project, we surveyed health care providers to determine the topic areas in which they wanted guidance. Pain assessment, evaluation (i.e., inter- pretation of the assessment to evaluate treatment effect), and management were identified as priorities [8, 9]. Re- garding pain assessment, one of the great challenges in pediatric oncology is selecting measurement instruments that are age-appropriate, clinimetrically sound, and facili- tate measurement of the various types of pain that chil- dren and adolescents with cancer experience.
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Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

serve hard-to-reach populations can also be critical to improving upon ac- crual rates for adolescents that may not typically enroll in a clinical trial due to transportation, distance, or other fi - nancial barriers. The accrual process may also be improved by requiring the use of multidisciplinary teams of clini- cians to work with adolescent cancer patients, including mental health pro- fessionals (eg, psychologists, psychia- trists, social workers) and quali fi ed lay health workers and patient navigators. Although differences in clinical trial enrollment and adherence for adoles- cents based on race/ethnicity, gender, and other sociodemographic factors are unclear, multidisciplinary teams en- gaged in clinical trial enrollment that are racially, ethnically, and linguistically di- verse and inclusive of both men and women may be an important best practice to incorporate. Research sug- gests that patients are more medically adherent, report increased satisfaction when communicating with their pro- viders, and improvements in the quality of their medical care when they have a provider(s) who shares their same gender, race/ethnicity, perceived age, and are able to speak their primary language. 65 In addition, studies con-
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Congruence of Reproductive Concerns Among Adolescents With Cancer and Parents: Pilot Testing an Adapted Instrument

Congruence of Reproductive Concerns Among Adolescents With Cancer and Parents: Pilot Testing an Adapted Instrument

sample, only 2 parents indicated they have not talked to their daughter about fertility, and these parents were also incongruent on 5 or more questions. One statement ( “ I ’ ll be frustrated if I can ’ t have a baby ” ) showed a 64% (9) incongruence between parents ’ pre- dictions and adolescents ’ responses. Here, approximately 30% (4) of parents said that their daughter would say she would be sad, not frustrated; however, 50% (7) of adolescents said they would be disappointed, not frustrated. The majority of parents who were incon- gruent on this question held an asso- ciate ’ s degree or higher, were Christian, had a child with leukemia, had a child that self-reported her health as good, and say they have talked with their daughter about fertility.
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Prevalence of oral manifestations in children and adolescents with cancer submitted to chemotherapy

Prevalence of oral manifestations in children and adolescents with cancer submitted to chemotherapy

Cancer is a term used to describe a group of diseases that involve the uncontrolled growth of cells [1]. In recent decades, cancer has become a serious global public health problem. The World Health Organisation (WHO) has esti- mated that in the year 2030, there will be 27 million incident cases of cancer, 17 million deaths from cancer, and 75 mil- lion people each year living with cancer. The regions most affected by these increases are developing countries [2].

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Improving Enrollment in Clinical Trials for Adolescents With Cancer

Improving Enrollment in Clinical Trials for Adolescents With Cancer

Because the shortfall in clinical trial enrollment among AYA oncology patients is the result of multiple challenges in the current health care system, multifaceted strategies should be used to correct this problem. These strategies include increasing referrals to cancer centers that offer clinical trials, establishing joint pediatric/ medical AYA oncology programs, ex- pediting institutional review board approval of national open cooperative trials at member institutions, and fa- cilitating enrollment of open trials through partnerships between co- operative groups and community hospitals. The guidelines on AYA on- cology published by the National
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Life experiences of adolescents with cancer in Turkey: a phenomenological study

Life experiences of adolescents with cancer in Turkey: a phenomenological study

interviews were listened to repeatedly to gain a general sense and understand the life experiences of the adolescents. They were scripted with Microsoft Word and important situations and explanations were included. The authors followed the Colaizzi's steps for phenomenological data analysis for identifying and grouping themes with similar characteristics (Table-1). At the end of the Colaizzi's process, each researcher formed detailed explanations and definitions regarding the subject which were consolidated and sub-themes were determined. Codes and any discrepancies were discussed before consensus on emerging themes was achieved. To increase the reliability and to verify the results, a specialist working in the same paediatric oncology clinic was consulted. All of the interviews were heard by the specialist and he was requested to formulate themes. After all these procedures, the emerging themes were discussed with a child psychiatrist until a final consensus was reached. When the themes and subthemes were finalised, the adolescents were invited to comment on the study's result and the themes/subthemes with the intention of approving the results.
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Fertility preservation options for children and adolescents with cancer

Fertility preservation options for children and adolescents with cancer

Puberty represents an important developmental milestone for FP. In males, pubertal changes forecast the maturation of germinal epithelium, with progression towards spermatids and mature sperm. Before puberty, any retrieval option is unlikely to produce cells that can be currently employed for assisted reproductive techniques. Therefore, based on avail- able technology, there is no value is harvesting testicular tissue in prepubertal boys, irrespective of their infertility risk. This view can be considered as short-sighted. As previ- ously mentioned, the lag time between exposure to cancer treatment and desire to father a child can be in the order of decades. As such, it is likely that technological advances will allow in vivo or in vitro maturation, or novel assisted reproductive techniques generate options currently unavail- able. Indeed, Yokonishi et al reported successful pregnancy in mice using neonatal testicular tissue with spermatogen- esis induced in vitro; 8 healthy offspring were produced and
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Increasing the Number of Clinical Trials Available to Adolescents Diagnosed With Cancer

Increasing the Number of Clinical Trials Available to Adolescents Diagnosed With Cancer

Increasing the number of clinical trials for older adolescents with cancer is a complex initiative that will involve im- portant cultural shifts among stake- holders, government, and industry. However, recent initiatives in the United States and Europe should set the stage for precedents in this regard, and we look forward to the next 5 years of ongoing change. The earliest impact should be centralization in the United States of all national cancer clinical trial accruals and data management. The next most likely bene fi t will be the centralization of IRB processes of all national cancer clinical trials instead of the current local IRB management at 3100 participating community and re- search institutions in the NCTN. In Europe, it is critical that the ongoing revision of this European Clinical Trials Directive ensures more effective clini- cal trial activity, with the goal of enabling cancer clinical trials and translational research activity in Europe from being compromised. 14 Finally, as
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Sociodemographic Factors and Quality of Life in Children and Adolescents under Cancer Treatment

Sociodemographic Factors and Quality of Life in Children and Adolescents under Cancer Treatment

By last, it is important to highlight that, excepting the difference found in the physical dimension in 13 to 16 years adolescents, that when the QOL is eva- luated in this population, the socioemotional dimensions presents more altera- tions. Abu-Saad Huijer and its collaborators (2013) have pointed out that the low scores found in these areas, could be due to the poor attention provided to psychological symptoms in hospital settings. Finding that supports our central idea that it is necessary to provide integral attention to children and adolescents with cancer, including socioemotional interventions for them and their family. There is some evidence of different socioemotional strategies than can be im- plemented in onco-pediatric services (Fedele et al., 2013; Kazak, 2005; Marsland et al., 2013; Mehranfar et al., 2012; Wakefield et al., 2015). Unfortunately, there is even more evidence of the need of effective socioemotional attention in this services (Abu-Saad Huijer et al., 2013; Castillo-Martínez et al., 2009; Deasy- Spinetta, 1993; Litzelman et al., 2011; Pek et al., 2010), findings to which this work is added. Most of the existing interventions have been oriented to the fami- lies, leaving the patients aside; situation that poses a challenge of providing so- cioemotional attention to the patients, considering it could favor the adaptation and reintegration to their daily contexts.
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Influencing Referral of Adolescents and Young Adults With Cancer to Sites With Higher Rates of Trial Enrollment

Influencing Referral of Adolescents and Young Adults With Cancer to Sites With Higher Rates of Trial Enrollment

In addition to in fl uencing providers, efforts could be made to increase AYA patients ’ and public awareness of the bene fi ts of treatment at specialized centers and in CTs. The AYA Health Out- comes and Patient Experience study surveyed . 500 AYAs aged 15 to 39 years, 13% of whom were aged 15 to19 years, and found that 62% of AYAs did not know if there were CTs available for their cancer; an additional 19% repor- ted that there was no CT available (S.M. Schwartz, MD and A. Wilder-Smith, PhD, MPH personal communication, 2013). Although willingness to participate in CTs has been correlated with aware- ness of CTs, 24 it is unclear how much
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Cancer Incidence Rates and Trends Among Children and Adolescents in the United States, 2001–2009

Cancer Incidence Rates and Trends Among Children and Adolescents in the United States, 2001–2009

Given the rarity of pediatric cancer, there is a greater possibility of a type I error when analyzing subgroup ana- lyses with small numbers. Some sig- ni fi cant fi ndings in the present study demonstrate signi fi cance that is very close to the cutoff margin, such as the fi nding of increasing leukemia among the Hispanic group or increasing Hodgkin ’ s lymphoma among the Afri- can American population. Although these trends may be true, these fi nd- ings must be further validated to dis- tinguish rate changes secondary to coding or diagnostic artifact versus a change that could be caused from behavioral, environmental, genetic, or population-based factors. The cause of changing incidence rates is often un-
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Care of adolescents and young adults with cancer in Asia: results of an ESMO/SIOPE/SIOP Asia survey

Care of adolescents and young adults with cancer in Asia: results of an ESMO/SIOPE/SIOP Asia survey

needs to be modulated according to competing causes of mortality and life expectancy. The care of AYAs with cancer is in many respects the other side of the coin: setting the cancer to one side, AYAs are likely to be in good health, with robust physiological reserves, and have a long life expectancy. But they also face particular issues relating to social, psychological and cognitive function, maintenance of fertility, and the possibility of long-term adverse events associated with treatment. For example, Keegan et al found that AYAs with a second malignant tumour—Hodgkin lymphoma, sarcoma, breast, thyroid or testicular cancer—were more than twice as likely to die of their disease than those with the same tumour but no prior cancer. 6 This may explain why survival in AYAs
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The Self-Efficacy Forecasting Based on Hope to Life and Resiliency in Adolescents Suffering from Cancer

The Self-Efficacy Forecasting Based on Hope to Life and Resiliency in Adolescents Suffering from Cancer

Esmaeeli et. al. (2012) in a research on “support: main need of patients suffering from cancer in confrontation with disease diagnosis” performed the study with qualitative and approach and by content analysis method. Participants consisted of 19 patients, physician, nurse and patient’s close relatives selected from who referred to oncology, cancer specialized clinic and one of the help centers for cancer patients. Sampling continued in the form of beginning goal and to data saturation. Interviews and field notes were used to gather data. All interviews were recorded and then handwritten word by word. As a result, the research findings showed that patients suffering from cancer have many needs after confrontation with diagnosis and cancer that is particularly significant first, their recognition and understanding from clinical personnel and health and medicine policy makers, and secondly comprehensive support of these patients.
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