The study findings revealed that the Persian version of 3*I was a reliable and valid instrument for assessing invalidation among the Iranian population with chronic pain disorders. The findings also showed the high frequency of invalidation perception among patients with chronic pain disorders. The perceived invalidation especially stemming from the spouse and family sources correlated with worst disease impact and health status.
There is no questionnaire for description and measurement of invalidation in Iran. The current study was the first investigation that attempted to address the topic. A satisfactory level of reproducibility in all 3*I items and dimensions in five sources indicated that it is a reliable measure for evaluation of invalidation experiences by the different sources. Most values were above 0.75 and acceptable. The study by Kool et al. who introduced the 3*I for the first time did not evaluate test–retest reliability .
Levels of internal consistency were good and acceptable in the most dimensions and sources of 3*I (ranging from 0.61 to 0.88) which were comparable with the Kool’s study . However, the levels of consistency of the Persian 3*I was lower than the Kool study in two sources (spouse discounting and family lack of understanding). These lower levels of consistency may be related to the heterogeneous patient population in our study which included the patients with FM and non-inflammatory chronic pain disorders such as osteoarthritis, low back pain and regional pain diseases versus those with relative homogenous rheumatic diseases (e.g., chronic low back pain, rheumatoid arthritis, and FM) in the previous validation studies [3, 7, 21]. This heterogeneity could lead to the differences in the symptomology and associated invalidation experiences within our papulation. Additionally, the significance of these lower values was undetermined, so the wording and concept of questions in the spouse and family sources of Persian 3*I were identical to other sources.
The convergent validity of Persian 3*I dimensions were evaluated by correlation between the SIQR domains and the SF-12 subscales. We found several moderate but significant correlations of both invalidation dimensions (the discounting and lack of understanding) with worse disease impact, physical functioning, more bodily pain, and poor mental health in the spouse and family sources. The strongest correlations were between the spouse and family sources of discounting/lack of understanding and different domains of the disease impact and health status. It is conceivable that spouse and family play a main role in relationships’ intimacy and consequently happiness and well-being feeling of patients. So, the invalidation stemming from these sources may be associated with a greater correlation with disease severity and health status. Consistent with previous studies, our results demonstrated the perceived invalidation from spouse and family was the more compelling indicators of poor disease impact and health status [3, 4, 7].
Interestingly, there were strong correlations of the invalidation perception derived from work environment with the functional domains of SIQR and SF-12. These significant correlations could just be seen in different functional aspects of the SIQR and the PF, RP, SF, and RF subscales of SF-12, but not for other subscales of these questionnaires. The more invalidation experienced from the work environment, the worse physical and social status and functioning were found. Such observations strongly lend support to satisfactory convergent validity in the functional properties of the Persian 3*I.
Invalidation by medical professionals correlated hardly with disease impact and health status. The low correlations were found between the SIQR domains and the lack of understanding dimension. It seems that the perceived invalidation from medical professionals might be due to different reason. For instance, it might be due to inability of medical providers to understand illness impact, misdiagnosis, or inability to control patients’ symptoms, rather than simple empathy between patients and their caregivers . Usually patients with FM experience a long journey in achieving a correct diagnosis and management . As the majority of our participants suffered from FM, the delayed diagnosis and mismanagement occurring in the FM patients was conceivable. The mean long duration of symptoms to diagnosis (46.37 months) in the FM papulation could be indirectly an indicator of this type of invalidation by medical professionals. In other word, the invalidation arising from medical professionals seems to be different and probably must be measured using another scale . Moreover, the lack of understanding reflects not recognizing, comprehending, and emotionally supporting the patient or illness. Its meaning and concept are different from the discounting which represents disbelieving, admonishing, dismissing inability to work, and offering unusable advice . Thus, our findings seem reasonable that showed the presence of meaningful correlations between misunderstanding from medical professionals with disease impact. The lack of understanding and rejection of patients with FM by medical caregivers have been known to occur frequently in clinical settings .
Additionally, in congruence with the previous studies, the discounting in all sources correlated more closely to the disease impact and health status rather than lack of understanding [3, 7]. This finding re-emphasizes that the different impact of overt rejection (discounting) versus not being acknowledged (lack of understanding) and also implies the importance of distinguishing these two aspects of invalidation in research and clinical assessment. However, overall these results indicated satisfactory construct validity for the Persian 3*I. The more invalidation experience by the patients was associated with worse physical function and mental well-being.
Interestingly, in our study, the extent of invalidation arising from the different sources was remarkable. Twenty to thirty percent of the patients experienced the invalidation ‘sometimes or often/very often’ from other people. Although frequent sources of invalidation are the spouse and work environment, there was considerable invalidation perception from other sources. It was in agreement with previous studies where it was shown that the extent of invalidation could differ from different sources [3, 7]. Although it remains to be clarified whether intimacy, and type of relationships and cultural factors could have differential impact on the invalidation derived from different sources, the spouse and family sources of invalidation appears to be more important and indicate higher influential effects on the quality of life in patient with chronic pain conditions. According to our results, the most frequent sources of perceived invalidation were from the close relatives and work environment which showed the most meaningful associations with the worse disease impact and health status. This data emphasizes the need for educating family and people who are interacting with patients closely. Perhaps this could empower patients to cope better with invalidation.
This study had some limitations. Only female patients were recruited and therefore the findings of this study cannot be generalized. Furthermore, 82% of our patients were not employed, which were generally less educated and more unemployed when compared with the previous studies. Although education, literacy levels, and lower socioeconomic status seem to change the likelihood of invalidation due to misinformed conceptions about pain , it remains to fully explore to what extent and how these demographic variables influence the impact of invalidation on physical and psychological health outcomes. Moreover, a large number of patients in this study did not complete the last two source categories (work environment and social services). Therefore, caution should be exercised in interpreting the findings of these two sources.