Exploring patient’s experience and unmet needs on pregnancy and family planning in rare and complex connective tissue diseases: a narrative medicine approach

Abstract

ObjectiveThe aim of this work is to explore patient’ unmet needs of rare and complex rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of the narrative-based medicine (NBM) approach.MethodsA panel of nine rCTDs patients’ representatives was identified to codesign a survey aimed at collecting the stories of rCTD patients who had one or more pregnancies/miscarriages. The results of the survey and the stories collected were analysed and discussed with a panel of patients’ representatives to identify unmet needs, challenges and possible strategies to improve the care of rCTD patients.Results129 replies were collected, and 112 stories were analysed. Several unmet needs in the management of pregnancy in rCTDs were identified, such as fragmentation of care among different centres, lack of education and awareness on rCTD pregnancies among midwifes, obstetricians and gynaecologists. The lack of receiving appropriate information and education on rCTDs pregnancy was also highlighted by patients and their families. The need for a holistic approach and the availability specialised pregnancy clinics with a multidisciplinary organisation as well as the provision of psychological support during all the phases around pregnancy was considered also a priority.ConclusionThe adoption of the NBM approach enabled a direct identification of unmet needs, and a list of possible actions was elaborated to improve the care of rCTD patients and their families in future initiatives.

Management of pregnancy in autoimmune rheumatic diseases: maternal disease course, gestational and neonatal outcomes and use of medications in the prospectiveItalian P-RHEUM.it study

“…These peculiar features will advance the field by incorporating patients’ perspectives, which is relevant for identifying unmet needs and envision interventions to improve the care of pregnant patients. 48 …”

Was erwartet mich und mein Kind?

“…Patientenorganisationen haben dabei einen besonderen Stellenwert. Sie werden als zentrale Anlaufstelle für Informationen betrachtet, sind aber auch wichtig, um mit anderen Betroffenen in Kontakt zu kommen [10,39]. Frauen mit ERE wünschen sich insbesondere leicht verfügbare Informationen, die evidenzbasiert sind und regelmäßig aktualisiert werden, bestenfalls schriftlich als E-Mail, im Internet oder als Flyer.…”

“…▶Abb. 1 Informationsbedarf rund um die Schwangerschaft von Frauen mit entzündlich-rheumatischen Erkrankungen [9,10,36,37,39].…”

“…Neben dem Bedarf an Informationen und Beratung ist eines der Hauptanliegen von Frauen mit ERE, emotionale und psychologische Unterstützung in allen Phasen der Schwangerschaft zu erhalten, und zwar sowohl durch professionelle Hilfe eines Psychologen/einer Psychologin als auch durch Selbsthilfegruppen [39].…”

Systemic lupus erythematosus: one year in review 2023

“…In addition, living in a rural context, having no experience of pregnancy, fearing unexpected pregnancy, having sexual distress and depression were associated with more serious fertility concerns. In a recent European work(93), patients' unmet needs regarding pregnancy and family planning were analysed using the narrative-based medicine approach. The replies were collected from patients with rare and complex connective tissue diseases (CTDs), including 44 SLE patients.…”