A systematic review of interventions to improve knowledge and self-management skills concerning contraception, pregnancy and breastfeeding in people with rheumatoid arthritis

Abstract

This systematic review aimed to determine the effectiveness of interventions for improving knowledge and/or self-management skills concerning contraception, pregnancy and breastfeeding in people with rheumatoid arthritis (RA). We searched four databases (MEDLINE, CINAHL, Cochrane Trials, PsycINFO) using a comprehensive search strategy. Studies were eligible if they were prospective, published in English from 2004 to 2015, included participants with RA and tested an intervention designed to improve knowledge and/or self-management skills relating to family planning, pregnancy or breastfeeding. As no studies met the latter criterion, the search strategy was expanded to include all prospective studies evaluating RA educational and/or self-management interventions. Data on study characteristics, participant characteristics and programme content were extracted to summarise the evidence base for interventions to support people with RA during their reproductive years. Expanded literature searches identified 2290 papers, of which 68 were eligible. Of these, nine papers (13%) specifically excluded pregnant women/breastfeeding mothers or recruited only older people. Only one study (1%) explicitly evaluated pregnancy-focused education via a motherhood decision aid, while eight studies (12%) incorporated relevant (albeit minor) components within broader RA educational or self-management interventions. Of these, three studies provided methotrexate education in relation to conception/pregnancy/breastfeeding; three incorporated discussions on RA and relationships, impact of RA on the family or sexual advice; one provided information regarding contraception and fertility; and one issued a warning regarding use of biologic therapy in pregnancy/breastfeeding. In conclusion, information regarding family planning, pregnancy or breastfeeding represents a negligible part of published RA educational interventions, with scope to develop targeted resources.

Establishing cross-discipline consensus on contraception, pregnancy and breast feeding-related educational messages and clinical practices to support women with rheumatoid arthritis: an Australian Delphi study

“…Although we did not include patients in our sample, the foci for the Delphi were directly informed by previous empirical, consumer-based research, consistent with the approach adopted by Hawker et al 30. The results from this study and our recent systematic review11 point to the opportunity to develop and evaluate targeted educational interventions for this group of consumers.…”

“…In particular, our data suggest that women with RA have clear pregnancy-related educational needs and seek specific information from their care providers about medicines safety during pregnancy and breast feeding, physical and emotional support services and practical coping strategies to manage pain and flares during the postnatal period 6. Moreover, in a recent systematic review and editorial, we identified a lack of self-management interventions for women with RA targeted towards these issues,9 11 despite European League Against Rheumatism (EULAR) recommendations that specific patient education is critical at important life and disease course stages12 and published Standards of Care for RA that recommend comprehensive and individually tailored education about RA and its management 13. While some consumer texts14 15 and arthritis organisation web pages have been developed to address information gaps in this area, they remain limited and inadequately address some of the most important issues raised by women relating to disease management and medicines safety during pregnancy and breast feeding 5…”

“…1 Further, women with RA have expressed great concern and frustration at the contradictory messages they receive from their healthcare providers relating to RA management during conception, pregnancy, breast feeding and early parenting. 6 Having already undertaken primary research to identify the health information and service needs of women with RA concerning pregnancy, postnatal care and early parenting 6 and evidence for the effectiveness of interventions to improve women's knowledge and selfmanagement skills related to contraception, pregnancy and breast feeding; 11 our programme of translational research sought to develop guidance for clinicians in interprofessional care. Specifically, this study aimed to establish cross-discipline consensus on the important educational messages (ie, 'what to say') and practice behaviours (ie, 'what to do') in the management of women with RA relating to contraception, pregnancy, breast feeding and early parenting.…”

Using Visual Timelines in Telephone Interviews: Reflections and Lessons Learned From the Star Family Study

“…Women with ARDs encounter a range of challenges when they begin to approach a transitional journey during their childbearing years, including fertility, timing pregnancies, increased risk of miscarriage, changes in disease activity, risks and benefits of medication and treatment during pregnancy and breastfeeding, and managing pain and physical limitations when caring for young children (Nightingale et al, 2006;Ostensen & Ceti, 2015;Signore et al, 2011). Research has highlighted the lack of information available to women during this emotive and challenging time, and more integrated care has been recommended (Ackerman et al, 2016;.…”

Arthritis/Rheumatoid Arthritis

“…Self-management education programs highlight the role of patient education in protective and therapeutical health-care activities and consist of organized learning experiences usually designed to facilitate the adoption of health-promoting behaviors. Self-management interventions often involve various skills regarding the disease, including problem solving, decision-making, and relations with health professionals [99,100]. Self-management interventions are person-centered, and they focus on encouraging active participation of the individuals in order for them to develop their well-being and to manage the symptoms [101].…”