Quality of life
Cancer therapy can cause several acute side-effects, including nausea, fatigue, neuropathy, or pain. Patients may also face a broad range of (late) effects of cancer and cancer treatment, affecting physical, emotional, as well as social well-being. These effects can be drastic and sometimes permanent. The number of people living on with or after cancer diagnosis is still rising, caused by the aging population and improvements in cancer survival. Good quality of care is important for these people, which includes preventive measures for a healthy livestyle and behaviour. However, not only patients are affected by cancer; people in their (direct) surroundings feel the effects of cancer and cancer treatment as well.
One of the IKNL research themes is focussed on the effects of cancer and cancer treatment. Among this research, patient-based surveys are a main source of data collection about these effects. These surveys are also known as Patient Reported Outcome Measures (PROMs). In collaboration with Tilburg University, IKNL has developed PROFILES, a patient tracking system that has enabled the collection of population-based data about (late) effects of cancer since 2004.
Another IKNL research theme is focussed on the side effects of cancer treatment, which are effects that specifically occur during the period of treatment rather than afterwards. By monitoring these side-effects in the direct environment (i.e. by the patient herself, without having to visit the hospital), a timely intervention of these symptoms can prevent them from getting worse. The PROFILES online diary is one of the tools that can be applied towards this means. Symptom monitoring yields a better quality of care and quality of life of cancer patients.
Research focussed on follow-up care comprises both medical check-ups for cancer recurrences as managing and treating (late) effects of cancer and cancer treatment. IKNL research includes quality of life feedback for patients, the effect of self-care and self-care interventions, use of care, follow-up care preferences, and patient information provision.
During cancer treatment, an optimal lifestyle is required to endure cancer treatment, to restrain the negative effects of cancer treatment, and to promote recovery. A healthy lifestyle is as well recommended to prevent cancer recurrence, relapse, or the origination or progression of a new tumour or comorbid disease. PROFILES can monitor nutrition, weight, circumference, exercise habits, use of alcohol, and smoking habits for large cohorts of patients. These data can be related to several outcomes, including quality of life and survival.
Significant others and loved ones
Cancer may as well affect the patients partner, children, and parents, including the need for long-term informal care, the emotional effects of cancer, and the impact of cancer on relationships. We more and more investigate the effects of cancer on the patients significant others and loved ones.