Reporting on patients living with HIV "disengaging from care". Who is actually "lost to follow-up"?

Retention in care remains an important concern for health care providers. However, accurately identifying who is or is not retained in care can be problematic. Not all patients believed to be engaged in care are actually in care, and not all patients believed to be disengaged are truly disengaged. Identifying the status of individuals within populations is important for clinical, administrative and surveillance concerns. As part of the Linkage and Retention in Care Project at St Michael's Hospital in Toronto, Canada, we investigated the status of patients diagnosed with HIV. Detailed investigation determined who was actually Lost-to-Follow-Up (i.e., disengaged from care >12 months) and who had disengaged for known reasons. This approach determined more precisely who was currently followed in care and who was not, and to target efforts to contact and reengage patients more effectively. This study illustrates the importance of accurately monitoring populations enhancing disease management.

The effects of a sacrococcygeal pilonidal sinus wound on activities of living: thematic analysis of participant interviews.

AIMS AND OBJECTIVE: To describe the effects sacrococcygeal pilonidal sinus wounds had on participants' activities of living. BACKGROUND: A sacrococcygeal pilonidal sinus commonly occurs in healthy young people and is associated with considerable morbidity and discomfort. Surgery is frequently required, and patients are often discharged home with large open wounds. Most research has addressed the technical aspects of surgery and treatment. DESIGN: An interpretive descriptive approach guided by The Model of Living framework. METHODS: Purposive sampling was used to recruit four women and seven men, age range 17-39 years, from a metropolitan hospital in NSW, Australia. Data were collected through semi-structured interviews that were audio-taped, transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes and eight subthemes emerged from the analysis: (1) 'Adaption' included subthemes, learning to live with the wound, difficulty living with the wound and living life despite the wound; (2) 'Perception' embraced subthemes, embarrassment, lack of understanding and changed body image; and (3) 'Control' included subthemes, loss of control and gaining control. Participants whose pain was not managed, who were unprepared for the postoperative recovery at home or experienced delayed wound healing had most difficulty with activities of living. CONCLUSIONS: This research gives some insight into the pilonidal wound experience from the person's perspective. All activities of living were affected by the pilonidal sinus wound. The effect was variable and influenced by pain, embarrassment and a general lack of understanding about the condition and the care of the wound. The specific wound location was an underlying factor causing problems for participants. RELEVANCE TO CLINICAL PRACTICE: Individualised care will help in reducing discomfort and improving life experiences following surgery. Patients who are prepared for the postoperative recovery at home, have adequate analgesia and do not experience delayed wound healing are more likely to manage activities of living.