Self-Management of Obsessive-Compulsive Disorder in the long-term after therapy - a focus group interview

Background, aims and objectives: When research investigates how patients obsessive compulsive disorder (OCD) are doing after therapy they usually report a symptom level at single points in time. The goal of the present study was to reveal a more multidimensional description of what OCD patients who have received treatment might find valuable when dealing with OCD symptoms in the long term. Methods: Fifteen patients with OCD who had received group exposure and prevention response therapy (ERP) between 6 and 11 years ago were recruited to attend focus groups. Eleven of the patients had received various other treatments in addition. The present symptom-level varied from none to severe OCD symptoms. The patients were asked open-ended questions concerning what they had learned from the group ERP, which they all had as denominator and how they dealt with the OCD symptom variations over time. The interviews were audiotaped, transcribed and analysed phenomenologically. Results: The overall finding was that the patients had achieved a foundation for a relaxed solution-oriented attitude regarding their OCD, regardless of their Yale-Brown Obsessive Compulsive Scale (Y-BOCS) level.  The foundation for the attitude consisted of a new self-understanding, a higher evaluation of themselves, externalization and devaluation of OCD, where the OCD was seen in terms of symptoms and not as behaviour crucial to their identity, seeing OCD as possible to influence and maintaining several self-management strategies. Concretely, patients used parts of ERP such as: reminding themselves that bad emotions will eventually subside, comparing their behaviour to normal standards, recalling specific exposure exercises they undertook in therapy and using less formal exposures than in therapy. Furthermore, the patients made efforts to reduce their general stress level and took breaks from routines. One patient even avoided everyday habits to prevent the occurrence of new rituals. Surprisingly, none of the participants used formal ERP as they were taught. Conclusion: The present study provides valuable experience-based knowledge which might serve as input to future the development of a multidimensional assessment tool which can evaluate whether OCD patients have attitudes and strategies that make them able to cope with symptom variations. The results also indicate ways in which future improvements in OCD treatment can be achieved. Finally, the study points to the need to develop strategies to increase engagement in formal ERP after therapy. We advance our study as an important contribution to the literature on person-centered OCD management.