Background There is little research on the impact of emotion regulation on patient participation in rheumatology. Alexithymia is a well researched conceptualization of dysfunctional emotion regulation, characterised by difficulties in identifying and naming emotions. Findings on alexithymia and health care utilization are inconsistent, but patients with alexithymia could be expected to have difficulties in taking active part in shared decision making.
Objectives To investigate the relationship between alexithymia and patients’ involvement in medical decision making in a sample of individuals with rheumatoid arthritis (RA).
Methods Subjects were individuals in the Oslo RA Registry. Alexithymia was measured with a Norwegian translation of the 20-item Toronto Alexithymia Scale (TAS-20). Pain and fatigue were measured on a 100-mm visual analogue scale. The questionnaire also included demographic variables (gender, age, education, marital status) and questions on health care utilization. M-HAQ, AIMS-2 and The Arthritis Self Efficacy Scale were also applied. Chi2 tests and one-way ANOVAs were applied to compare groups. Binary logistic regression analyses were applied to investigate the relationship between involvement in medical decisions, alexithymia and other variables.
Results Of the 1004 individuals who handed in the questionnaires, 807 (80.4%) completed TAS-20; 638 (79.1%) females and 169 (20.9%) males. The mean score on TAS-20 was 47.6 (SD 11.5), with 47.0 (SD 11.6) among females and a significantly higher mean score of 49.7 (SD 10.8) among male subjects (p<0.01).The subjects were categorized into three categories according to their TAS-20 scores. A majority of the subjects (N=511, 63.3%) were characterized as not having alexithymia, 185 subjects (22.9%) had scores in the intermediate range (51 to 61), and 111 (13.8%) subjects were characterized as alexithymic; 12.2% in females and 16.0% in males. - Compared to patients without alexithymia, fewer alexithymic subjects reported to have received sufficiently information (p<0.0001) or to have consulted a rheumatologist (p<0.01) or a physiotherapist (p<0.05). Subjects with alexithymia reported to be less satisfied with the treatment they received (p<0.0001) and reported less involvement in medical decisions. Only 12.1% of subjects in the alexithymia group indicated that they had been much involved in medical decision making, compared to 21.1% in the intermediate group and 32.1% in the No alexithymia group (p<0.0001). Alexithymic subjects and subjects in the intermediate group also indicated a need for more involvement (p<0.05). In order to test whether the association between alexithymia and reported involvement in medical decisions would be upheld when other variables were controlled for, we conducted a logistic regression analysis, with the dichotomy “Much involvement” versus the pooled “Some involvement” and “No involvement” categories as a dependent variable. The odds ratio for subjects with intermediate or high alexithymia scores to report a high degree of involvement was 0.5 (p<0.01) and for subjects with above the sample median of pain self efficacy the odds ratio was 1.8. (p<0.01).
Conclusions The prevalence of alexithymia was similar to findings in samples of healthy individuals in the same age ranges. There was an independent negative association between alexithymia and the experience of having been involved in medical decision making.
Disclosure of Interest None Declared