Cancer ­Survivorship Outcomes and Epidemiology

DACHS – Darmkrebs: Chancen der Verhütung durch Screening / Colorectal cancer: chances for prevention through screening

IMPACT – Impact of clinical determinants, therapy, and lifestyle factors on long-term and late effects among colorectal cancer survivors

(in cooperation with Clinical Epidemiology and Aging Research[C070] and others)
The DACHS study is an epidemiological case-control study. Since 2003, colorectal cancer patients and randomly selected control participants with no history of colorectal cancer have been recruited for this study. The control participants and patients are matched with respect to age, sex, and their county of residence. Patients are regularly followed up for years to assess the course of their disease. Recent funding (IMPACT3) will extend this follow-up up to 20 years after diagnosis.

In addition to the repeated patient-reported outcomes during follow-up, blood samples were also collected at the start of the study. Together with the tumor histology samples, these can provide valuable information with regard to understanding the molecular biological aspects of the development of long-term and late effects.

Using data from DACHS, we have shown that comorbidities rather than older age was associated with higher healthcare use. Furthermore, we found that lifestyle factors such as lower levels of physical activity was associated with more fatigue, However, changing towards a healthier lifestyle since cancer diagnosis (e.g. more physical activity, healthier diet, moderating alcohol consumption or stopping with smoking) could improve HRQOL and reduce symptoms at follow-up.

A further study by our group in this project has shown that minimally invasive surgical techniques used in patients with early stage (I-II) colorectal cancer with the intention of a gentler procedure and reduced postoperative complications showed no differences in general quality of life compared to open surgery, but a higher risk of colorectal cancer recurrence.

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EUonQoL – Quality of Life in Oncology: Measuring what matters for Cancer Patients and Survivors in Europe (in cooperation with the EUonQoL study group)
This project aims to contribute to the EU initiatives against cancer by developing, piloting, and validating the European Oncology Quality of Life Toolkit (EUonQoL-Kit) for use among cancer patients and survivors in Europe. The digitally administered toolkit is developed together with patient representatives and stakeholders from a patient-centered perspective, and adjusted to different disease phases. The final EUonQoL-Kit would be applicable for use in future periodic surveys for evaluation of health policy interventions.

The EUonQoL-Kit is currently validated in a pilot survey in a wide European sample of patients at different stages of the cancer care continuum. Our working group was actively involved in several working packages in the development and validation of the German version of the toolkit. This included literature review, review and translation of the toolkit and study material, as well as the recruitment and data collection.

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EiBe - Evaluation individueller Bedürfnisse von Menschen mit und nach Krebs / Evaluation of individual needs of people living with and after cancer (in cooperation with the Cancer Information Service)

The Cancer Information Service (KID) offers free counseling for all questions related to cancer. The study idea arose from the interest of the KID to quantify the unmet needs of their clients with cancer. For this purpose, the “CASUN” (“Cancer Survivors' Unmet Needs”) questionnaire was translated into German and applied as a part of the regular KID user survey. 

The results showed that users of the KID report a high number of unmet needs. Many of them have several unmet needs and they do not only seek information about the cancer itself, but also regarding the improvement of quality of life and healthcare in general. Participants who are female, have lower education, or living alone have high unmet needs. The most common unmet needs include networking and coordination between healthcare practitioners, access to complementary/alternative treatment methods and help in dealing with side effects and treatment complications.

CroKuS – Folgen der Corona-Beschränkungen für Krebstherapie und Survivorship / Consequences of Corona restrictions for cancer therapy and survivorship (in cooperation with Health Economics, Cancer Information Service, Baden-Württemberg Cancer Registry)
The COVID-19 pandemic affected health systems worldwide. In this population-based cross-sectional survey, cancer patients and survivors living in Baden-Württemberg, Germany, were asked about restrictions due to the COVID-19 pandemic, including social life, work, oncological care, and economic aspects.

An evaluation of the potential consequences on participants’ health was conducted to derive evidence-based recommendations for health policies. The study showed that about 20% participants reported changes in oncological care. Participants who experienced changes in active treatment (e.g. delay of surgery, change of chemotherapy scheme) reported significantly more depression and anxiety, more symptoms, and a lower functioning and overall quality of life.

Clinical data reported to the cancer registry until 2026 will be used to evaluate further clinical aspects, e.g. whether a delay in diagnosis and start of therapy is associated with a higher rate of recurrence or with a poorer survival.

EORTC QLQ-SURV (in cooperation with Netherlands Cancer Institute and the EORTC-QLQ Study Group)
Previous instruments to assess health-related quality of life (HRQoL) were mostly developed to assess HRQoL during the acute treatment phase. With a growing number of cancer survivors, it is imperative to consider their HRQoL in the survivorship phase. Potential effects could be adverse and long-term. These include persistent fatigue, pain, musculoskeletal problems, peripheral neurological symptoms (e.g. polyneuropathy), body image issues, sexual dysfunction, relationship problems, cognitive dysfunction, anxiety and depression, and fear of recurrence/ progression. Survivors may also face socioeconomic challenges such as return to work, loss of income, and difficulties in obtaining insurance, financial loans, mortgages. On the other hand, there is evidence that surviving cancer can have positive psychological effects. All these effects, both positive and negative, might impact on the individual’s HRQOL. This project aims to develop a patient-reported outcome measure that can address the survivorship context. Phases I-III in the development of this questionnaire has already completed. Throughout these phases the questionnaire module (SURV-100) has been developed and pre-tested; and furthermore three site-specific add-on modules for breast cancer (BR-SURV45), colorectal cancer (CR-SURV34), and prostate cancer (PR-SURV30) have been developed.

The project is now in phase IV – which is the final phase –, and which consists of a large scale international psychometric and cross-cultural validation study of the questionnaire.

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PROCAS – Prostate Cancer Survivorship in Switzerland 
(in cooperation with National Institute for Cancer Epidemiology and Registration, c/o University of Zurich, Switzerland)
This study aimed to better understand the health-related quality of life (HRQoL) and late effects of treatment in long-term prostate cancer survivors (five and more years post-diagnosis). The study has explored personal and medical determinants of long-term HRQoL, such as  treatment type, age, and comorbidities, aiming to contribute to the improvement of follow-up care. The results showed, for example, that long-term survivors who had nerve-sparing prostatectomy had similar symptom burden and comparable overall quality of life as long-term survivors who did not undergo nerve-sparing surgery. The only differences were found in relation to sexual activity. Men who had nerve-sparing surgery reported higher sexual activity than those who could not undergo nerve-sparing surgery. Regarding urinary incontinence and other scales of the quality of life instruments used, no differences were found between the two groups.

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LinDe – Lebensqualität in Deutschland / Quality of life in Germany (in cooperation with Clinical Epidemiology and Aging Research)
To identify and quantify possible functional impairments and long-term effects in cancer survivors, it is important to compare whether there are differences in health-related quality of life (HRQoL) with the German general population.

The LinDe study was initiated to generate reference data on HRQoL and further potential problems (stress, depression) for studies involving cancer survivors.

Studies using LinDe data showed that although the general HRQoL of cancer survivors is comparable to that of controls of the same age, specific differences in symptoms are reported, even many years after diagnosis. Furthermore, long-term breast cancer survivors under the age of 80, for example, showed a significantly higher prevalence of depressive symptoms compared to women of the same age without cancer (30% to 24%). However, this was mainly the case if the cancer was metastasized or if a recurrence had occurred since initial diagnosis.

CAESAR „Cancer Survivorship – a multi-regional population-based study“. (in cooperation with Clinical Epidemiology and Aging Research and six population-based cancer registries in Germany)

In view of increasing survival rates of cancer, aspects of health-related quality of life (HRQoL), the current life situation and the question of possible long-term effects are becoming increasingly important.

The first population-based survey of the study was conducted in six federal states (Schleswig-Holstein, North Rhine-Westphalia, Rhineland-Palatinate, Hamburg, Bremen and Saarland) in 2009/2010.

More than 7,000 people who had been diagnosed with breast, colorectal or prostate cancer at least five years previously took part in the study. Participants completed a questionnaire that covered HRQoL, current health status, as well as potential negative and positive effects of cancer.

A follow-up survey of the study was conducted in 2018/2019. It was aimed at all participants in the initial survey who were still alive and had given their consent to be contacted again. More than 2,700 participants took part in the follow-up survey.

As part of the follow-up study, the treating physicians of the participants were also asked to complete a questionnaire with the aim of obtaining a more differentiated picture of treatments and comorbidities.

The results show that long-term survivors of breast, colorectal or prostate cancer report good quality of life overall 5-15 years after diagnosis, comparable to the general population, provided that no recurrence or second tumor has occurred. However, younger long-term survivors reported deficits, especially in the psychosocial area, and overall a tumor-specific pattern of complaints. There were also indications of gender-specific impairments in sexuality and body image among long-term survivors of colorectal cancer. Fortunately, almost two-thirds of long-term survivors of breast, colorectal or prostate cancer who are of working age are able to return to their jobs. However, financial problems were observed in the event of retraining or after a reduction in working hours, which can affect health-related quality of life. Even almost 10 years after the initial survey, i.e. 14–24 years after diagnosis of cancer, there were still increased specific symptoms and functional limitations. The pattern varied depending on age, gender and disease status. Overall, however, these long-term survivors rated their health-related quality of life and general health status slightly better than people of the same age who had never had cancer. Despite this encouraging finding, the results indicate the need for a comprehensive, risk-adapted survivorship care program to identify and treat possible long-term and late effects after the diagnosis and treatment of cancer.

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