Reference populations, or “controls”, are often needed in order to determine if a symptom or the functional level in a group of patients is a sign of their specific situation and disease related or just “life related” and to be found also in a reference group. In studies of health related quality of life, the established generic instruments such as SF-36 or EQ-5D have results from reference populations. However for specific instruments, validated and constructed for certain groups of patients, this is not always the case.
As we use specific questionnaires based on in depth interviews with patients, and expert validation in teams of experts participating in the care of specific groups of patients and finally face-to-face validated with patients, we are in need of reference data on some of the symptoms and functions included in the questionnaires used in groups of patients. Thus the aim of this study is to study self-reported symptoms such as urinary incontinence, fecal incontinence, sexual function, the ability to walk and sit without problems, negative thoughts (stress symptom), depression and socioeconomic factors in a large group of Swedish inhabitants, women and men, in appropriate age groups.
In a reference population, symptoms such as fecal or urinary leakage, erectile dysfunction and stress symptoms such as negative intrusive thoughts are less common than in a group of patients with rectal or prostate cancer. Health related quality of life is higher in the reference population compared with populations of patients.
To describe health related quality of life and psychological and socioeconomic situation in a Swedish reference population in order to compare the results to those in groups of patients.
Inclusion finished by autumn 2015 with 1078 consenting individuals.