Women with RA need targeted and consistent management from all of their healthcare professionals to support them through contraception, pregnancy and breastfeeding and early parenting, say researchers.
The Melbourne-based research team has recently finished developing a cross-discipline consensus statement, soon to be published in the BMJ Open, which will provide guidelines on information and clinical practices for management of contraception, pregnancy and breastfeeding in RA.
Co-author, Dr Ilana Ackerman, a senior musculoskeletal research fellow at the Department of Epidemiology and Preventive Medicine, Monash University, and orthopaedic physiotherapist, said there was a clear need for accurate, evidence-based and freely accessible information to support shared decision-making between women with RA and their health-care professionals during this stage of life.
“As part of our work we asked women about what the major issues were for them,” she told the limbic.
“While they placed a lot of trust in their rheumatologist they were also looking for additional, high quality, practical information. There were also mixed messages between different health professionals that created confusion, particularly around the safety and toxicity of RA medications.”
In developing their soon-to-be-released consensus statement, the researchers consulted with rheumatologist, obstetricians/obstetric medicine physicians, specialist pharmacists.
They found coordination in information delivery, the mode and timing of information delivery, evidence underpinning information, engagement of the right health professionals at the right time and a non-judgemental approach to infant feeding were the most important issues to consider.
Dr Ackerman said practical support was an important component of this, especially given the fact that women with RA were at risk of a post-partum flare.
“I think these women feel a bit isolated at a time when they have a new baby and they might have a flare up,” she said.
“They need practical information, like how to bathe a baby when their wrists are painful, or changing nappies with painful, swollen fingers.”
Writing recently in an editorial in the Rheumatology, Dr Ackerman and her colleagues said more needed to be done for women with RA when they were planning a family.
“Although RA affects women across their lifespan, it has particular implications for women who are planning a family, given the physical and psychosocial impacts of this disease and the potential adverse effects of RA drugs,” they wrote.
“Conception (and contraception), pregnancy and breastfeeding must all be planned and managed carefully, with appropriate clinical guidance.
“There is a clear need for accurate, evidence-based and freely accessible information to support shared decision-making between women with RA, their families and the treating health-care professionals during this key stage of life. For families living in rural and remote areas or low- and middle-income countries where access to rheumatology care is limited, this is particularly important.”
Meanwhile, in addition to the provision of a consensus statement, Dr Ackerman and her colleagues are now working on developing additional resources specifically for this group of women. This includes a website that pools resources, and a booklet for women providing practical tips and strategies for caring for infants.
“There are existing support services, and we want to add to that by helping to increase awareness, especially for health care professionals,” she said.
“While it’s not feasible for a rheumatologist to schedule an appointment for every question a woman might have, it would be helpful to provide access to someone on the team like an RA nurse who can help, and if they can’t, then they can ask the rheumatologist. Then these women would feel much more supported.”