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The article focuses on several European Cancer Rehabilitation and Survivorship (ECRS) meetings in which 140 papers published in Acta Oncologica. It mentions the course and risk of late effects in childhood cancer survivors are well described and risk factors identified are all closely related to the specific treatment provided for the cancer disease; and also mentions the papers address Patient Reported Outcomes (PRO) use and readiness for e-health solutions during therapy and rehabilitation.

Background. Evidence for the safety and benefits of exercise training as a therapeutic and rehabilitative intervention for cancer survivors is accumulating. However, whereas the evidence for the efficacy of exercise training has been established in several meta-analyses, synthesis of qualitative research is lacking. In order to extend healthcare professionals' understanding of the meaningfulness of exercise in cancer survivorship care, this paper aims to identify, appraise and synthesize qualitative studies on cancer survivors' experience of participation in exercise-based rehabilitation. Material and methods. Five electronic databases (PubMed, PsychINFO, EMBASE, Cinahl and Scopus) were searched systematically for articles published up to May 2014 using keywords and MeSH terms. To be included, studies had to contain primary data pertaining to patient experiences from participation in supervised, structured moderate to vigorous-intensity exercise. Results. In total 2447 abstracts were screened and 37 papers were read in full. Of these, 19 studies (n = 390) were selected for inclusion and critically appraised. Synthesis of data extracted from eight studies including in total 174 patients (77% women, age 28-76 years) exclusively reporting experiences of participation in structured, supervised exercise training resulted in nine themes condensed into three categories: 1) emergence of continuity; 2) preservation of health; and 3) reclaiming the body reflecting the benefits of exercise-based rehabilitation according to cancer survivors. Accordingly, the potential of rebuilding structure in everyday life, creating a normal context and enabling the individual to re-establish confidentiality and trust in their own body and physical potential constitute substantial qualities fundamental to the understanding of the meaningfulness of exercise-based rehabilitation from the perspective of patients. Conclusions. In addition to the accumulating evidence for the efficacy of exercise training in cancer rehabilitation, it is incumbent upon clinicians and policy-makers to acknowledge and promote the meaningfulness of exercise for the individual, and to use this knowledge to provide new solutions to current problems related to recruitment of underserved populations, long-term adherence and implementation. [ABSTRACT FROM AUTHOR]

Background:To help the growing number of cancer survivors deal with the challenges of cancer survivorship, survivorship care plans (SCPs) were recommended by the Institute of Medicine (IOM) in 2006. The SCP is a formal document that contains both a tailored treatment summary and a follow-up care plan. Since the IOM recommendation 10 years ago, the implementation in daily clinical practice is minimal. Several studies have investigated the effects of SCPs on patient-reported outcomes and oncology and primary care providers (PCPs), but the quantity and quality of these studies are limited. Results:The first four randomized trials comparing SCP delivery with usual care failed to show a positive effect on satisfaction with information provision, satisfaction with care, distress or quality of life. SCPs did improve the amount of information provided and communication of PCPs with medical specialists and patients. A recent small trial that changed the focus from SCP as primarily an information delivery intervention to a behavioral intervention did observe positive effects on self-reported health, lower social role limitations and a trend towards greater self-efficacy. Gaps in knowledge about SCPs include uncertainty about content and length of the SCP; whether it should be delivered online or on paper; the timing and frequency of delivery; which health care provide should deliver SCP care. Finally, cost-effectiveness of SCP interventions has received limited attention. Conclusion:Currently, there is not enough evidence to warrant large-scale implementation of SCPs, or to abandon SCPs altogether. Emphasis on the SCP process and survivor engagement, supporting self-management may be an important way forward in SCP delivery. Whether this is beneficial and cost-effective on the long term and among different groups of cancer survivors needs further investigation. [ABSTRACT FROM PUBLISHER]

The Nordic countries have a long tradition of large-scale biobanking and comprehensive, population-based health data registries linkable on unique personal identifiers, enabling follow-up studies spanning many decades. Joint Nordic biobank-based studies provide unique opportunities for longitudinal molecular epidemiological research. The purpose of the present paper is to describe the possibilities for such joint studies, by describing some of the major Nordic biobank cohorts with a standardised calculation of the cancer incidence in these cohorts. Altogether two million donors have since 1966 donated more than four million biological samples, stored at-20°C to-135°C, to 17 biobank cohorts in Finland, Iceland, Norway and Sweden. As a result of joint database handling principles, the accuracy of personal identifiers and completeness of follow-up for vital status in all participating biobanks was improved. Thereafter, the cancer incidence was determined using follow-up through the national cancer registries. Biobanks based on random samples of population typically showed slightly lower cancer incidence rates than the general population, presumably due to better participation rates among health-conscious subjects. On the other hand, biobanks including samples for viral screening or clinical testing showed 1. 5 to 2. 1 fold increased incidence of cancer. This excess was very high immediately after sampling, but for some cancer sites remained elevated for years after clinical sampling. So far, more than 100,000 malignant neoplasms have occurred after sample donation, and the annual increase of the cancer cases in these cohorts is about 10,000. The estimates on the population-representativity of the biobanks will assist in interpretation of generalizability of results of future studies based on these samples, and the systematic tabulations of numbers of cancer cases will serve in study power estimations. The present paper summarizes optimal study designs of biobank-based studies of cancer. [ABSTRACT FROM AUTHOR]

With the advent of multimodality therapy, the overall five-year survival rate from childhood cancer has improved considerably now exceeding 80% in developed European countries. This growing cohort of survivors, with many years of life ahead of them, has raised the necessity for knowledge concerning the risks of adverse long-term sequelae of the life-saving treatments in order to provide optimal screening and care and to identify and provide adequate interventions. Childhood cancer survivor cohorts in Europe. Considerable advantages exist to study late effects in individuals treated for childhood cancer in a European context, including the complementary advantages of large population-based cancer registries and the unrivalled opportunities to study lifetime risks, together with rich and detailed hospital-based cohorts which fill many of the gaps left by the large-scale population-based studies, such as sparse treatment information. Several large national cohorts have been established within Europe to study late effects in individuals treated for childhood cancer including the Nordic Adult Life after Childhood Cancer in Scandinavia study (ALiCCS), the British Childhood Cancer Survivor Study (BCCSS), the Dutch Childhood Oncology Group (DCOG) LATER study, and the Swiss Childhood Cancer Survivor Study (SCCSS). Furthermore, there are other large cohorts, which may eventually become national in scope including the French Childhood Cancer Survivor Study (FCCSS), the French Childhood Cancer Survivor Study for Leukaemia (LEA), and the Italian Study on off-therapy Childhood Cancer Survivors (OTR). In recent years significant steps have been taken to extend these national studies into a larger pan-European context through the establishment of two large consortia - PanCareSurFup and PanCareLIFE. The purpose of this paper is to present an overview of the current large, national and pan-European studies of late effects after childhood cancer. This overview will highlight the strong cooperation across Europe, in particular the EU-funded collaborative research projects PanCareSurFup and PanCareLIFE. Overall goal. The overall goal of these large cohort studies is to provide every European childhood cancer survivor with better care and better long-term health so that they reach their full potential, and to the degree possible, enjoy the same quality of life and opportunities as their peers. [ABSTRACT FROM AUTHOR]

In clinical practice, the term "paraneoplastic itch" is used to describe itch in patients with cancer. Patients with hematological or solid tumor malignancies can be affected. In general, paraneoplastic itch is considered a rare disorder. However, paraneoplastic itch in hematological malignancies such as polycythemia vera and lymphoma are relatively frequent while other forms of paraneoplastic itch are in fact extremely rare. The true frequency of this symptom is unclear, epidemiological data in this field are limited. Itch in malignant disease may additionally impair patients' quality of life. A population-based cohort study showed that chronic itch without concomitant skin changes is a risk factor for having undiagnosed hematologic and bile duct malignancies. Paraneoplastic itch is rather resistant to treatment. In 2012, an interdisciplinary interest group of physicians and researchers was founded, aiming to generate a clear definition of paraneoplastic itch. In this paper we briefly review the current knowledge and aim to define what can be summarized under the term "paraneoplastic itch". [ABSTRACT FROM AUTHOR]

Background. Survival from breast cancer (BC) in Estonia has been consistently among the lowest in Europe. The aim of this study was to examine most recent trends in BC survival in Estonia by age and stage. The trends in overall BC incidence and mortality are also shown in the paper. Material and methods. Estonian Cancer Registry data on all cases of BC, diagnosed in women in Estonia during 1995-2007 (n = 7424) and followed up for vital status through 2009, were used to estimate relative survival ratios (RSR). Period hybrid approach was used to obtain the most recent estimates (2005-2009). Stage was classified as localized, local/regional spread or distant. Results. BC incidence continued to rise throughout the study period, but mortality has been in steady decline since 2000. The distribution of patients shifted towards older age and earlier stage at diagnosis. Overall age-standardized five-year RSR increased from 63% in 1995-1999 to 74% in 2005-2009. Younger age groups experienced a more rapid improvement compared to women over 60. Significant survival increase was observed for both localized and locally/regionally spread BC with five-year RSRs reaching 96% and 70% in 2005-2009, respectively; the latest five-year RSR for distant BC was 11%. Survival for T4 tumors was poor and large age difference was seen for locally/regionally spread BC. Conclusions. Considerable improvement in BC survival was observed over the study period. Women under 60 benefited most from both earlier diagnosis and treatment advances of locally/regionally spread cancers. However, the survival gap with more developed countries persists. Further increase in survival, but also decline in BC mortality in Estonia could be achieved by facilitating early diagnosis in all age groups, but particularly among women over 60. Investigations should continue to clarify the underlying mechanisms of the stage-specific survival deficit in Estonia. [ABSTRACT FROM AUTHOR]

Background. Sedentary behaviour and reduced exercise capacity are potential persisting effects of anti-cancer therapy that may predispose to serious health conditions. It is well-established that physical exercise may prevent some of these problems. However, the extent to which cancer survivors are able to adopt long-term physical activity habits depends largely on their motivation. Aim. This theoretical paper aims to outline how researchers and practitioners can draw from Antonovsky's salutogenetic theory and White & Epston's Narrative Therapy to develop and implement intervention efforts centered on promotion of long-term physical activity behaviour, while at the same time increasing the individual cancer survivor's sense of meaning and personal health resources. Material and methods. The Copenhagen PACT (Physical Activity after Cancer Treatment) Study targeting adoption and maintenance of regular physical activity in post-therapy cancer survivors is briefly presented including a brief review of the theoretical rationale behind the psychological component of the intervention, i.e. a narrative-based exercise counselling programme. Subsequently, particular attention is given to the core principles, different components and structure of the counselling manual including sample questions and examples of written documents that have emanated from the individual counselling sessions. Discussion. The discussion includes consideration of some methodological challenges that arise when attempting to evaluate narrative-based interventions in the context of physical activity promotion in cancer rehabilitation and survivorship care. [ABSTRACT FROM AUTHOR]

Background. The increasing incidence of cancer combined with prolonged survival times seen throughout the western world increases the need for rehabilitation. Diagnosis and treatment for cancer may have substantial effects on the patients' physical, psychological, social and existential well-being. The aim of this paper is to describe the current situation in cancer rehabilitation in the Nordic countries, the Netherlands and Germany. Material and methods. Description of the current situation in cancer rehabilitation in the Nordic countries and literature review. Results. Rehabilitation as defined by multiple organizations covers a multidimensional view on chronic disease and its effect on the patient's life. The rehabilitation systems in Denmark, Finland, Sweden, Germany and the Netherlands differ depending on the differing social security and health-care systems, but rehabilitation provided is largely based on a similar, multidimensional and multidisciplinary understanding of cancer rehabilitation. Research on rehabilitation efforts in European countries indicates that there is substantial evidence with regard to single interventions which can be part of cancer rehabilitation. Discussion. In order to assure patients and families continuing quality of life, rehabilitation should be an integral and continuous part of all cancer care. [ABSTRACT FROM AUTHOR]

Health decisions involve sharing information and making choices—even if the choice is to leave the decision to others. The way that information is delivered and understood by consumers across their cancer journey in turn influences the health decisions they take. A public health approach to the cancer journey considers the information needs of individuals and the structures and systems that facilitate the provision of credible and timely information. This paper examines emerging research that takes a public health approach to promote information-sharing and health decisions, identifies information-sharing mechanisms used by providers to facilitate shared decisions and evaluates decision support processes designed to improve information-sharing and self-care events. Evidence is presented to guide future research directions. [ABSTRACT FROM AUTHOR]

Background. The clinical impact of trial-based quality of life (QL) outcomes is frequently underestimated due, in part, to prejudice and lack of knowledge by the medical community. The objectives of this paper are to show that QL assessments build upon an empirically based and stringent approach to measurement and QL outcomes should not be viewed nor handled differently than any other parameter in medical research. Material and methods. Literature overview. Results. The objectives are substantiated with empirical evidence showing that: (1) existing QL measures are as reliable as most other clinical outcomes; (2) available guidelines improve the quality of trial-based QL data; (3) QL data have strong prognostic value for survival; (4) clinical significance of QL data can be established; and (5) accounting for response-shift effects in QL data over time is feasible. Finally, the investigation of the genetic disposition of QL is described as an emerging area of research. Discussion. It is a waste of effort and money and also unethical when collected trial-based QL data are not used to their full power. QL and other patient-reported outcomes deserve to be included in more trials, with full disclosure of all results, and standardized interpretation. Only the combined use of patient-reported and clinical outcomes will enable the examination of the extent to which cancer patients live a qualitatively good life as long as possible. [ABSTRACT FROM AUTHOR]

Background and objectives. Cancer-related cognitive impairment has been acknowledged as a substantial limiting factor in quality of life among cancer patients and survivors. In addition to deficits on behavioral measures, abnormalities in neurologic structure and function have been reported. In this paper, we review findings from the literature on cognitive impairment and cancer, potential interventions, meditation and cognitive function, and meditation and cancer. In addition, we offer our hypotheses on how meditation practice may help to alleviate objective and subjective cognitive function, as well as the advantages of incorporating a meditation program into the treatment of cancer patients and survivors for cancer-related cognitive deficits. Findings. Various factors have been hypothesized to play a role in cancer-related cognitive impairment including chemotherapy, reduced hormone levels, proinflammatory immune response, fatigue, and distress. Pharmacotherapies such as methylphenidate or modafinil have been suggested to alleviate cognitive deficits. While initial reports suggest they are effective, some pharmacotherapies have side effects and may not relieve other symptoms associated with multimodal cancer treatment including sleep disturbance, nausea and pain. Several recent studies investigating the effects of meditation programs have reported behavioral and corresponding neurophysiological modulations that may be particularly effective in alleviating cancer-related cognitive impairment. Such programs also have been shown to reduce stress, fatigue, nausea and pain, and improve mood and sleep quality. Conclusions. With the increasing success of cancer treatment and the ability to return to previous family, social, and work activities, symptom management and quality of life are an essential part of survivorship. We propose that meditation may help to improve cancer-related cognitive dysfunction, alleviate other cancer-related sequelae, and should be fully investigated as an adjuvant to cancer treatment. [ABSTRACT FROM AUTHOR]

Introduction. An at least 3-month expected survival is a common inclusion criterion in cancer treatment trials, including advanced pancreatic cancer phase III studies. Published survival curves for advanced pancreatic cancer however seem to reflect a substantial survival shortfall. We wanted to assess the strength of this observation and search for an explanation by reviewing the literature. Methods. A Medline and EMBASE search was done for chemotherapy or chemotherapy based phase III studies in advanced pancreatic cancer published since 1997. Similar search was done at the American Society's of Clinical Oncology web site for abstracts presented since 2000. Three months mortality was based on the survival curves presented. Results. Fourteen papers and five abstracts met our criteria and are included in our review. Six thousand two hundred and twelve patients participated in these trials and 1 447 (23.3%) died in the first 3-month period. Figures were worse in patients with metastases and poorer performance status. Assuming that most deaths during treatment happened during the first 3-months, cause of death was reported in only 40 cases (2.8%). Progressive cancer was reported as cause of death in 21 of these cases. Less frequent causes of death were reported to be infections, 'complications of cancer', thromboembolic events and renal failure. Discussion. Overall treatment-related deaths represent a very small percentage of the deaths happening during the 3-month period, and are unlikely to be under-reported given the Good Clinical Practice oversight of these trials. Progressive cancer is likely to be an important cause of early mortality but given the very select nature of the trial-related population this cannot explain the phenomenon of 3-month early death burden of 23.3%. Our hypothesis, supported by multiple autopsy series, is that early death burden in advanced pancreatic cancer trial patients is likely to be due to under-reported vascular thromboembolic events. Thromboprophylaxis needs to be addressed in future trials. [ABSTRACT FROM AUTHOR]

Background and Purpose. Fatigue is one of the most common and troubling symptoms in cancer survivors. In this paper we review information about cancer related fatigue in survivors of breast cancer and Hodgkin's disease, discuss some of the potential biological mechanisms for this problem in cancer survivors, and briefly discuss potential interventions. Findings. Cancer-related fatigue persists long after cancer treatments end, and is associated with more intensive treatments (combined chemotherapy and radiation therapy) in these cancers. Fatigue prior to the onset of treatment is a strong predictor of persistent fatigue. Studies in breast cancer survivors suggest elevated levels of pro-inflammatory cytokines in association with persistent fatigue, as well as abnormalities in the hypothalamic-pituitary axis. Psychosocial and physical activity interventions have been shown in some studies to alleviate fatigue. Conclusions. Recognizing the syndrome of cancer-related fatigue is a high priority for the many cancer survivors who continue to experience this complaint as a chronic health problem. [ABSTRACT FROM AUTHOR]

This paper deals with some of the musculo-skeletal complication that can occur after cancer treatment. In particular, we focus on Cancer Treatment Induced Bone Loss (CTIBL) and the musculo-skeletal complications that can occur in patients treated for extremity sarcoma. In addition we discuss peripheral neuropathy, musculo-skeletal pain and briefly mention some of the complications related to radiotherapy. CTIBL is mostly studied in breast cancer and prostate cancer survivors. The cause in these groups is mainly due to treatment induced hypogonadism. Other causes of CTIBL are indirect or direct cause of chemotherapy, physical inactivity and inadequate intake of vitamin D and calcium. Treatment of CTIBL consists of diet and lifestyle changes and pharmacological intervention. Extremity bone sarcomas constitute a special group since they often experience mutilating surgery and heavy combination chemotherapy. The treatment results in worse function than the normal population and the amputated usually have lower physical functioning than patients treated with limb sparing surgery (LSS). However, most studies fail to show differences in quality of life between the amputated and LSS. Most of the studies performed on musculo-skeletal sequelae have been done on survivors of childhood cancer, breast cancer or prostate cancer. More studies among the other cancer groups are needed to reveal the extent and prevalence of these complications. [ABSTRACT FROM AUTHOR]

Rehabilitation of cancer patients include a broad range of activities aimed at information, counselling, advices on possible change of lifestyle and behaviour, psychological support, social welfare questions, ways of coping with side-effects of the anti-carcinogenic treatment given and additional treatment of numerous clinical problems. The change in the age distribution combined with the growing number of cancer survivors and the scarce economic resources allocated to 'after-treatment' clinical follow-up of cancer patients, even in the Scandinavian countries characterised by their public tax financed health system, emphasize the need for screening of rehabilitation needs among cancer patients. There is a need to identify patients in need for psychological and social intervention. However, this intervention among cancer patients in need has to be based on results achieved in clinical studies. This paper gives a brief introduction to the field of rehabilitation research and indicates a number of areas in which research would be of benefit for the clinical organisation of rehabilitation activities. These areas include the implication of social inequality, a characterisation of cancer patients who rehabilitate successfully, the gender perspective in rehabilitation, the age perspective, how to establish cancer disease specific rehabilitation modules, family and community aspects of rehabilitation, the dilemma between individual responsibility for lifestyle changes and feelings of guilt and the need for models which can determine the best timing of the intervention among cancer patients. [ABSTRACT FROM AUTHOR]

Purpose. Due to the improved prognosis of many forms of cancer, an increasing number of cancer survivors are both willing and able to return to work after their treatment. This has increased interest in studying work and cancer-related issues. The purpose of this paper is to give an overview of research on the impact of cancer on employment and work ability, on the effect of psychosocial factors on survivors' well-being, and to indicate research needs for the future. Results. Studies have shown that the majority of cancer survivors are able to continue working. There is, however, a group of cancer survivors who suffer from impaired health as a result of their illness, and this impairment sometimes leads to a decreased ability to work, or even disability. Employment and impaired work ability has most commonly been found to be associated with cancer type, type of treatment, health status, education and physical workload. The few studies that have focused on the effects of psychosocial factors in work life suggest that social support from occupational health services, and workplace accommodations for illness affect cancer survivors' return to work. Conclusions. More research is needed on the impact of social factors at work, which seem to play an important role in cancer survivors' ability to continue working. [ABSTRACT FROM AUTHOR]

This paper summarizes a comprehensive study of cancer survival in Sweden from 1960 to 1998. A total of 1 021 421 persons and 40 different cancer sites were included in the analyses. The main outcome measure is the relative survival rate (RSR) for different sites and follow-up times after diagnosis. The 10-year RSR for all sites combined has increased steadily--from 26.6% among men and 41.8% among women in the 1960s, to 44.6% (men) and 57.6% (women) in the 1990s. The expectation of life for a person diagnosed with cancer today is about 7 years longer than that of one diagnosed during the mid-1960s. About 3 years are gained due to changes in the relative distribution of various cancer types and about 4 years due to improved relative survival. During the 1990s substantial survival improvements were observed not only for uncommon types, such as testicular cancer, Hodgkin's lymphoma and some other haematologic malignancies, but also for cancer of the rectum, kidney and malignant melanoma. Survival for breast and cervical cancer also improved during the 1990s, but not that for pancreatic, liver or lung cancer. [ABSTRACT FROM AUTHOR]