Development of a Communication Instrument to Address Sexuality in COPD: COSY

Introduction: Sexuality, an important aspect of quality of life, is often overlooked in COPD. Our aim was to develop an instrument that facilitates communication and counseling on sexuality in persons living with chronic obstructive pulmonary disease (COPD).

Methods: We searched for publications on sexuality in COPD focusing on communication about sexuality and tools to support such communication. We also performed a survey asking 25 patients and 36 health care professionals (HCPs) about their attitudes, experiences, barriers, and facilitators when talking about sexuality. We set up a project expert team of HCPs and 3 persons with COPD. In a half-day workshop, the team discussed the results of the literature review and the survey as a basis for the contents, the "when and how" to address communication about sexuality, and the design of the communication instrument.

Results: The survey showed that although patients and HCPs wanted to talk about sexuality, it rarely happened due to communication barriers, lack of self-confidence, and misconceptions on both sides. In review rounds of the expert team, feedback on the drafts was collected and integrated into the final version of the communication instrument: COmmunication about SexualitY in COPD (COSY). The COSY instrument resulted in 4 tools: a communication leaflet, an application guide, a pictorial representation of the spectrum of intimacy for HCPs, and a comprehensible, picturized information booklet for patients.

Conclusions: Addressing sexuality in persons living with COPD should not be neglected. The COSY instrument could help to start and shape communication and consultations about sexuality and a more holistic consideration of quality of life.