Adherence to long-term medical follow-up: A qualitative, experience-focused study of people with spinal cord injury.

BACKGROUND: Scientific evidence indicates the presence of secondary conditions (such as pressure injuries) after spinal cord injury (SCI). Treatment methods focusing on the management of paraplegia and tetraplegia include systematic preventive follow-up. These advances have significantly improved the functional and vital prognosis of people with SCI, but some people may not have access to these specialized organizations or may not adhere closely to this medicalized vision. We used a narrative approach to explore the perceptions of people with SCI to better understand their adherence to follow-up. OBJECTIVES: We aimed to determine the "common denominators" that lead to adherence or non-adherence to long-term follow-up after SCI. METHODS: People with SCI who had completed their first rehabilitation period for > 1 year were included with regard to 2 variables: 1) an actual medical follow-up or not and 2) a history of pressure injury or not. A review of the literature was used as preparation for semi-directive interviews, which were prospectively analysed by using qualitative analysis software. Thematic saturation was reached at 28 interviews, and 32 interviews were ultimately completed. RESULT: Three main areas concerning participants' perceptions emerged: people's readiness, appropriation and modulation of the systematic follow-up. We developed a broad conceptual framework representing follow-up and the promotion of the long-term health of people with SCI from their perspectives. CONCLUSIONS: The medical environment should ensure that people with SCI are ready to actively consider the implementation of prevention strategies and should take into account their ability to establish their own truth, to integrate various life stages after SCI and to negotiate systematic follow-up. The implementation of data about functioning should be conducted using the concept of the Learning Health System.

The functioning of social support in long-term prevention after spinal cord injury. A qualitative study.

BACKGROUND: The impact of social support on the long-term condition after a spinal cord injury (SCI) varies across studies mainly involving self-report questionnaires. OBJECTIVE: We aimed to establish the common factors associated with social support leading individuals with an SCI to the effective prevention of secondary complications, including via adherence to medical follow-up. METHODS: Inclusion criteria were a history of acquired SCI of any etiology, wheelchair use, and age≥18 years at the time of the study. Participants should have completed their initial rehabilitation program in France≥1 year earlier and were also enrolled according to 2 related study variables: routine medical follow-up (patients were or were not followed up) and the medically supervised reporting of a pressure ulcer after the initial rehabilitation session (0 or≥1 pressure ulcers). We performed a preparatory quantitative and qualitative literature review to identify factors affecting long-term follow-up after SCI, then adopted a narrative design with semi-structured interviews, transcribed and analyzed progressively by using qualitative analysis software. RESULTS: We included 32 participants. We categorized our results based on the knowledge, attitudes, beliefs and practices of participants with respect to pressure ulcer prevention and long-term medical follow-up. Our narrative approach allowed us to identify 3 main domains relevant to social support: reciprocity, self-management and timing related to social support. CONCLUSIONS: Our study showed social support as a dynamic process, a reciprocal phenomenon evolving in variations over time. These findings should be central to short- and long-term therapeutic education programs for patients and for people providing social support. Effective changes should also be implemented through the concept of the Learning Health System.

Ten years of myocutaneous flaps for pressure ulcers in patients with spinal lesions: Analysis of complications in the framework of a specialised medical-surgical pathway.

INTRODUCTION: The objective of the study is to analyse complications associated with surgery for pelvic pressure ulcers in terms of their frequency, nature and rate of surgical revisions. The secondary aims are to analyse the rate of recurrence, length of stay and time to healing, and to determine factors associated with complications and recurrence. METHODS: It is a single-centre, retrospective cohort study with a 10-year follow-up setting in Nantes University Hospital, France, a specialist centre for spinal cord injury (SCI). All patients who were admitted to the Neurological Physical Medicine and Rehabilitation (PMR) department for surgery (flap coverage) for pelvic pressure ulcers between 1st of January 2004 and 30th September 2014 were included. The main outcome measures were the rate of complications, rate of recurrence, length of stay and time to healing, as well as factors associated with complications and recurrence. RESULTS: One hundred and sixty-six patients underwent 252 flap procedures in 239 operations. The majority of patients had SCI (78.3%). The ulcer sites were mainly ischial (67%), sacral (20%) and trochanteric (12%). Gluteus maximus was used most often (75.3% of flaps) (ischial and sacral ulcers), followed by tensor fascia lata (16.2%) (trochanteric ulcers). The rate of complications that delayed return to wheelchair at 6 weeks was 34.5%. The factors associated with complications were more than one surgical ulcer and drainage time greater than 10 days. The rate of recurrence was 20.04%. The factors related to recurrence were young age, scoliosis and an oblique pelvis. CONCLUSIONS: Management within a specialised medical-surgical pathway limited post-operative complications and recurrences in this sample of subjects who mostly had SCI.