By the end of 2011, more than 130 000 Norwegians were alive and had survived cancer for 5 years or more since their primary diagnosis (i.e. Long-Term Cancer Survivors (LTCSs)). There is increasing focus on life and function among cancer survivors. A late effect after cancer is a cancer-related health problem that persists for more than one year after end of cancer treatment and includes somatic diseases, mental disorders, subjective health complaints and social impairments. Late effects can first become clinically evident several years after treatment. Most organ-systems and functions may be affected, depending on the location of the cancer, the tumor type, intensity and extent of the treatment, but also on patient characteristics such as age, gender, genetic factors, life-style, and existing co-morbidities and by combinations of these factors. Life-threatening late effects such as second cancers and cardiovascular late effects typically emerge several years after end of primary treatment. Currently, there is limited organized and systematic health care for cancer survivors with or with high risk for developing late effects. There are also important deficits concerning the LTCS's knowledge of their risks for developing late-effects. By improved knowledge of the mechanisms and the course of late effects, better classification of LTCS's at risk for developing serious and common late effects can be performed. This allows for a more individualized and risk-based follow-up.
The present project includes 3 substudies: Substudy1: Two prospective studies (A and B) studying the development and course of late effects (in particular fatigue and cardiovascular late effects) and predictive factors for each of them, Substudy 2: A cross-sectional study studying young cancer survivors' needs for information on late effects and preferences for health care, experienced late effects and work life issues, and Substudy 3: An intervention study examining the effects of exercise during chemotherapy among testicular cancer patients.
Substudy 1A: The prevalence of chronic fatigue (duration> 6 months) increased from 8% at diagnosis to 36% 2 years later in a group of 84 breast cancer patients treated with chemotherapy before surgery, with or without additional antibody-treatment.
Substudy 2: The questionnaire survey assessed perceived needs for information and follow-up care regarding late effects following cancer treatment at an early age in relation to self-reported physical and mental Health, experienced late effects and work life issues. Survivors diagnosed with childhood cancer (except brain tumors) up to 18 years, or breast cancer, colo-rectal cancer, non-Hodgkin lymphoma, leukemia and malignant melanoma, aged 19- 39 years at diagnosis, in the period 1986-2009 in Norway were invited to attend. Of the 5361 survivors who received the invitation, a total of 2104 people responded (response rate 39%).
Preliminary results indicate that over 50% reported not having received information about late effects. Up to 80% reported unmet needs for information about late effects and how to best manage their health after treatment. More than half of the survivors wanted regular long-term follow-up care for late effects. Further, we have investigated self-reported work ability and work status. Perceived work ability was lower and the proportion of survivors not engaged in paid work was higher in the diagnostic groups who have received systemic treatment (chemotherapy) and/or radiation therapy compared to the survivors who have had surgery only (removed melanoma), even many years after treatment completion. Factors such as female sex, chronic fatigue and increased symptoms of anxiety and depression also increased the risk of not engaging in paid work. Chronic fatigue was found in 15% among melanoma survivors, 20% among leukemia survivors and 27-30% among the other diagnostic groups. we have also assessed lifestyle variables among these young cancer survivors, and found that 44% did not meet guidelines for physical activity, 50 had body mass index > 25 and 20% were current smokers. We are currently working on more detailed data analyses for other outcomes in this study.
Substudie 1B vil gi ny informasjon om utvikling av seneffekter, spesielt fatigue og kardiovaskulære seneffekter, etter dagens behandling for brystkreft og lymfom.
Substudie 2 vil gi ny informasjon om unge kreftoverlevere; hvordan deres behov for informasjon og oppfølging i forhold til seneffekter er, hva de har fått av oppfølging, forekomst av en rekke seneffekter, samt livsstil, livskvalitet og arbeidsevne.
Funnene fra delstudie 1 og 2 vil gi en bedre forståelse av livet etter kreft i ung alder og vil danne basis for informasjon til helsepersonell, og til fremtidige og nåværende pasienter. Funnene vil også være bidragende i forhold til planlegging av hvordan helsevesenet skal møte utfordringene knyttet til oppfølging av kreftoverlevere med seneffekter.
Substudie 3: På bakgrunn av få observasjoner er det vanskelig å komme med en klar konklusjon. Videre forskning med målsetting å bekrefte/avkrefte våre funn vil være av stor betydning.
More than 120 000 Norwegians are long-term cancer survivors (LTCSs). Many will suffer from late effects which might be life-threatening (cardiovascular disorders and second cancer) often debuting decades after treatment. Others, such as fatigue, strongly limits functioning and quality of life. National health care programs for LTCSs do not exist, and diagnose-specific follow-up programs include measures directed at late effects to a limited degree.
We therefore propose to establish a research collaborati ve to conduct 3 substudies. The overall aims are to gain better understanding of the course and predictive factors of major late affects, and by that to establish a basis for individualized guidance and follow-up. The needs of young LTCSs regarding follow -up and information on late effects will be studied and the efficacy of a physical exercise intervention will be tested. Substudy 1 includes two longitudinal studies, one of early stage breast cancer and lymphoma patients assessed from diagnosis until dea th. Major endpoints are fatigue and cardiovascular disorders. Assessments will include genetic susceptibilities and inflammatory markers. The second includes breast cancer patients enrolled in a Randomised Controlled Trial (RCT). In this context fatigue a ssessed from start of treatment until 3 years after treatment is the primary endpoint. Chronic fatigue will be explored in relation to known risk factors, treatment, immunologic and genetic factors. Substudy 2 is a cross-sectional survey among representat ive samples of LTCSs after lymphomas, testicular, breast and childhood cancers. A specific questionnaire on needs for information on late effects will be designed based upon previous studies. Substudy 3 will include development and testing in a RCT, physi cal exercise integrated with standard chemotherapy among testicular cancer patients.
The studies will generate results that can be directly employed in the present national efforts to improve care for LTCSs