Background The term invalidation refers to the patients' perception that their medical condition is not recognized by the social environment. It includes non-acceptance, misunderstanding, disbelief, rejection, stigmatization and suspicion that the problem is exaggerated or purely psychological. Two broad aspects of invalidation are: lack of understanding and discounting. Invalidation may be experienced from different sources, including the family and health professionals. The experience of invalidation will depend on the real expression of invalidation by other people as well as on personality characteristics of the patient that can be resilience or vulnerability factors for the experience of invalidation.
In patients with rheumatic diseases, invalidation has been shown to relate to a worse physical and mental health and more pain.
Objectives To compare patient's perception of invalidation from family and health professionals and to analyze to what extent socio-demographic, clinical and psychological characteristics of patients predict invalidation from those two sources, in rheumatic diseases.
Methods From a cross-sectional web-survey study, 562 Portuguese participants with a single rheumatic disease were included: rheumatoid arthritis, spondyloarthropathies, systemic lupus erythematosus and fibromyalgia (FM). Participants completed online questionnaires to assess invalidation, rheumatic diagnosis, socio-demographic aspects, pain and psychological characteristics, which included loneliness, happiness and the major (Big-Five) personality traits: openness, conscientiousness, extraversion, agreeableness and emotional stability.
Results Patients reported higher levels of invalidation from the family than from health professionals. Invalidation scores, from both the family and health professionals, were significantly higher in patients with FM when compared with the other disease groups.
Levels of invalidation from the two sources were positively correlated with pain and loneliness, and negatively with happiness, agreeableness, conscientiousness, emotional stability and openness. After adjusting for covariates, having FM remained associated with higher levels of invalidation from family and health professionals. Regarding psychological characteristics, low levels of happiness, agreeableness and conscientiousness remained associated with invalidation from both studied sources. Pain remained positively associated with invalidation from health professionals, but not from family, and loneliness remained positively associated with invalidation from family but not from health professionals.
Conclusions Our study among Portuguese rheumatic patients suggests that especially the family context –more than health professionals– may deserve attention of health professionals concerned with this problem. FM is associated with more invalidation than “more visible” rheumatic diseases. Also –irrespective of the underlying diagnosis– personality variables were associated with invalidation: low levels of happiness, agreeableness and conscientiousness. This indicates that dispositional factors make patients more resilient or vulnerable to invalidation. Of concern: patients with higher pain scores tend to feel higher levels of invalidation from health professionals.
Arthritis Rheum. 2009 Dec 15;61(12):1650-6.
Ann Rheum Dis. 2010 Nov;69(11):1990-5.
Disclosure of Interest None declared