Aziz NMCancer survivorship research: state of knowledge, challenges and opportunities. Acta Oncol 46: 417-432

Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland 20892, USA.
Acta Oncologica (Impact Factor: 3). 02/2007; 46(4):417-32. DOI: 10.1080/02841860701367878
Source: PubMed


Seminal advances in early detection of and treatment strategies for cancer have led to burgeoning numbers of cancer survivors. While most therapeutic modalities for cancer are beneficial and lifesaving, they are associated with adverse long-term and late sequelae.
Literature review using MEDLINE to identify studies examining adverse medical outcomes and post-treatment follow-up care among long-term survivors. Emerging concepts in survivorship research such as definitional issues, research paradigms and methodologic concerns were also examined.
Long-term or late adverse sequelae are more prevalent, serious, and persistent than expected in survivors of pediatric and adult cancer, but remain understudied especially among those diagnosed as adults. Follow-up care relevant to survivorship outcomes is neither standardized nor guideline or evidence based for most adult cancers, and optimal practices have yet to be defined.
Adverse sequelae contribute to burden of illness, health care costs, and decreased length and quality of survival. To-date, very few studies have compared survivor outcomes pre-and post diagnosis. It is critical to examine under-researched questions and understudied survivor groups. Regular follow-up care and monitoring of health status post cancer treatment should 1) permit the timely diagnosis and treatment of adverse outcomes; 2) enable timely diagnosis and treatment of recurrences; 3) facilitate screening and early detection of second cancer(s); 4) allow for detection and management of co-morbidities; and 5) provide the opportunity for preventive strategies such as lifestyle changes. Research findings to-date underscore the need for continued cancer survivorship research that will: inform our understanding of the mechanisms underlying adverse sequelae; lead to the design of less toxic treatments; test the effectiveness of interventions - medical, pharmacologic, and behavioral - that reduce adverse outcomes; test models of post-treatment follow-up care; develop an evidence base for optimal follow-up care practices; and inform survivor and provider decision making.

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    • "Since the 1970s, the death rates of women with gynecological cancer have significantly declined. As a result, there have been a growing number of survivors who are forced to cope with the consequences of the disease and its treatments (Aziz, 2007). Although survivorship is considered the most important outcome of a gynaecological cancer experience, it is understudied, and thus, the least understood aspect of the disease (Holland & Reznik, 2005). "
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    ABSTRACT: The purpose of this study was to understand the lived survivorship experience of Portuguese women with gynaecological cancer. A phenomenological hermeneutical method, inspired by Ricoeur’ theory of interpretation was employed. Ten women cancer survivors were recruited. An iterative process was carried out to identify themes and interwoven them into the four existentials of life world to lend structural meaning to the lived experience. Female survivors reported stories of positive and negative change complete with doubts and fears, as well as renewed relationships and altered priorities. Assisting clients with finding their ‘new normal’ and embracing its possibilities is critical to their long-term success.
    Procedia - Social and Behavioral Sciences 02/2014; 114. DOI:10.1016/j.sbspro.2013.12.743
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    • ", 2006 ) . As sub - optimal language skills may reduce survivor quality of life for the individual ( Murdoch , 2011 ) and increase the burden of illness for the wider community ( Aziz , 2007 ) , it is timely , there - fore , to investigate the language outcomes of children treated with contemporary posterior PFT treatment pro - tocols to determine the rehabilitative needs following the provision of medical care . Pre - morbid language and / or neurocognitive perfor - mance indices of children presenting with PFT are rarely available , and when available , may not be a reli - able reflection of capabilities due to mass effects of the tumor . "
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    ABSTRACT: Up to 85% of children treated for brain tumor survive beyond five years; hence optimizing quality of life in survivorship has become a priority. As multiple factors contribute to the heterogeneity of neurocognitive and language outcomes for individual children following treatment, a means of monitoring subsequent development is needed for the individual child, particularly when pre-morbid performance indices are not available. The current study investigated the use of developmental language trajectories as a means of monitoring language development subsequent to treatment for tumors located within the posterior fossa. The language skills of four children treated for posterior fossa tumor (PFT) were monitored over time (range of monitoring: 2-6 years) and the resultant trajectories were plotted against the trajectories based on tests' normative data as well as the trajectories of control children drawn from each child's local community. Each child's trajectory was considered in terms of age-appropriate developmental gains and discussed regarding the need for ongoing clinical monitoring of emerging, developing or established language skills. The study's findings highlight the heterogeneity of language outcomes following PFT. The utility of the application of developmental trajectories for the provision of individualized post-treatment support is discussed.
    Neurorehabilitation 02/2013; 32(1):165-83. DOI:10.3233/NRE-130834 · 1.12 Impact Factor
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    • "Effective management of late complications of cancer treatment would contribute to the well-being of cancer survivors [9]. Hence, it is imperative to understand the experiences of gynecological cancer survivors during care for adverse treatment outcomes; unfortunately, this aspect has not been well studied [1]. Routine post-treatment follow-up visits provide gynecological cancer survivors opportunities for management of physical/psychological adverse effects and early recurrence detection [10-12]. "
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    ABSTRACT: Background Post-treatment follow-up visits for gynecological cancer survivors should provide opportunities for management of adverse physical/psychological effects of therapy and early recurrence detection. However, the adequacy of such visits in Japan is poorly documented. We qualitatively explored care-seeking experiences of Japanese gynecological cancer survivors and deduced factors influencing care-seeking behaviors and treatment access. Methods We conducted 4 semi-structured focus groups comprising altogether 28 Japanese gynecological cancer survivors to collect a variety of participants’ post-treatment care-seeking behaviors through active interaction with participants. Factors influencing access to treatment for adverse effects were analyzed qualitatively. Results Survivors sought care through specialty clinic visits when regular post-treatment gynecological follow-ups were inadequate or when symptoms seemed to be non-treatment related. Information provided by hospital staff during initial treatment influenced patients’ understanding and response to adverse effects. Lack of knowledge and inaccurate symptom interpretation delayed help-seeking, exacerbating symptoms. Gynecologists’ attitudes during follow-ups frequently led survivors to cope with symptoms on their own. Information from mass media, Internet, and support groups helped patients understand symptoms and facilitated care seeking. Conclusions Post-treatment adverse effects are often untreated during follow-up visits. Awareness of possible post-treatment adverse effects is important for gynecological cancer survivors in order to obtain appropriate care if the need arises. Consultation during the follow-up visit is essential for continuity in care.
    BMC Women's Health 01/2013; 13(1):1. DOI:10.1186/1472-6874-13-1 · 1.50 Impact Factor
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