Psychosocial problems and support needs of cancer patients through the course of illness.

Introduction: During the last decades the number of people living with cancer has increased steadily because of better survival rates. Surviving cancer does however not imply that the illness has disappeared from the patient’s life. Healthcare use remains higher for years. This may relate to physical problems such as fatigue or lymphoedema resulting from cancer treatment, but mental health and social problems related to ‘living with cancer’ may also be responsible for additional healthcare demand. Aim: To provide insight into the psychosocial problems and related support needs of cancer patients through the course of illness. In addition, we wished to explore the support preferences of these patients and their perception of the role of the general practitioner in the care process. Methods: A survey was conducted among a random sample of cancer patients (all sites) from two regions of the Netherlands Cancer Registry. Respondents (N=171) were representative for the total population of adult cancer patients according to age and tumor site. The survey consisted of (items from) validated questionnaires (e.g. QLQ-C30, BIOPRO, CQI mammacare, Quote-general practice care). Analysis of variance was conducted to assess the scores of subgroups of cancer patients and to test for differences between these groups. Subgroups were constructed based on illness duration, type of cancer, treatment and demographics. Results: Half of all respondents experienced psychosocial problems. Anxiety and concern were reported most frequently, followed by sexual problems and work related issues. Comparing the scores of patients with a different illness duration, a shift is visible from mainly psychological problems during the first years to more social problems at the long-term. There is a consistent pattern that patients diagnosed between two and five years ago have more psychosocial problems and a higher need for information and support than patients with a shorter or longer illness duration. One third of the patients reporting psychosocial problems has a need for more support. In this respect, GPs are slightly more often mentioned as prefered support providers than medical specialists. Discussion: Although this was a cross-sectional study, the results suggest that psychosocial problems of cancer patients and related support needs change over time. Feelings of anxiety and concern predominate during the first years, whereas social problems (e.g. relational problems, work related problems) later arise. To study the process of ‘living with cancer’ longitudinally, we intend to set up a nation al panel of 1500 cancer patients (with yearly random samples of new patients from the Cancer Registry). With this panel, we will be able to study the patients’ perspective on the role of primary care in more detail. (aut. ref.