http://www.primecentre.wales/2017-star-study-stakeholder-meeting.php

1. Improving support for women with
musculoskeletal conditions during
pregnancy, pregnancy planning, and early
parenting
Dr Rhiannon Phillips

2.  Sumilo et al. (2012) analysed data from
18,231 mother-child pairs from the
Millennium Cohort Study
 9.4% of women who had recently given
birth had at least one long-term limiting
illness
 29.3% of women with LLTIs had
musculoskeletal complaints
 Prevalence of LLTIs associated with socio-
economic deprivation
Long-term limiting illnesses (LLTIs)
and motherhood

3.  About half of pregnancies for women
with LLTIs were unplanned (Sumilo et al.
2012)
 Higher risk of pre-term birth, more likely
to have C-section, less likely to
breastfeed
 At age 7, 12 % of children of mothers with
LLTIs have an LLTI (about double the rate
of mothers without LLTIs)
Long-term limiting illnesses (LLTIs)
and motherhood

4.  BUT the VAST MAJORITY of women with disabilities have
positive pregnancy and parenting outcomes!
 As well as condition specific support from health
professionals, support with stopping smoking, continuing
breastfeeding, and addressing intimate partner violence could
help improve outcomes
Long-term limiting illnesses (LLTIs)
and motherhood

5.  35% - 51% of people in the UK report chronic
pain (Fayaz et al. 2016)
 10-14% of adults in the UK report having
moderately/severely disabling chronic pain
(Fayaz et al. 2016)
 Estimates suggest that as many as 30% of 18-39
year olds have some form of chronic pain
(Fayaz et al. 2016)
 Fibromyalgia has a prevalence of between 1.7%
and 5.4% in the UK, i.e. > 250k women of
reproductive age.
Chronic Musculoskeletal
Conditions

6.  Musculoskeletal problems have a high level of interference
with people’s daily lives, impacting on:
 physical functioning
 mental health
 social life
 relationships
 work
 sleep
 finances
(Phillips et al. 2008, Buck et al. 2010, Sprangers et al.
2000)
Impact of musculoskeletal conditions

7.  Precise numbers unknown, but may people
with chronic pain are responsible for the
care of young children (Armistead et al,
1995).
 Can pose a range of challenges, e.g.
engaging with play and social activities,
practical tasks, impact of psychological
distress (Evans et al. 2005, Grant, 2001)
 Women with arthritis reported feelings on
inadequacy, guild, and anxiety in terms of
living up to expectations of motherhood
(Grant, 2001)
Chronic pain and parenting

8.  HOWEVER, there were a number of
practical solutions that women came
up with that could help with many of
these challenges, e.g.
 lightweight baby carriers and
pushchairs
 supportive cushions for feeding baby
 placing baby table at a convenient
height
 accepting help when available
 alternatives to physical play that allow
interaction and bonding
 Harmonising expectations and reality
of parenting is important
 Women want to stay in control and
not let others ‘over-protect’
(Grant, 2001)
Chronic pain and parenting

9.  Approx. 2-3% of women of reproductive age report having
some form of arthritis (Welsh Health Survey Data). This is
equivalent to 230k - 400k women UK wide.
 Rheumatoid Arthritis – appprox 2% of adult women,
around 15k women aged under 44 currently diagnosed in
the UK
 Lupus – 0.07% of women, approx 10k under 49 years of age
in the UK
 A range of other ARDs, including juvenile idiopathic
arthritis, the spondyloarthritides, antiphospholipid
syndrome, systemic sclerosis, inflammatory myopathies
and vasculitis also affect women of reproductive age
Autoimmune Rheumatic Diseases

10.  Women with ARDs are:
 less likely to have children
 have fewer children
 have longer intervals between pregnancies
 This is influenced by:
 maternal choice
 being advised to limit family size
 altered sexual functioning
 differences in fertility
 pregnancy loss
(Olesinska et al. 2014, Katz et al.2006,
Ostensen et al.2004)
Autoimmune Rheumatic Diseases
(ARD)

11.  Around a third of women with rheumatoid arthritis
who are taking medication that is contraindicated in
pregnancy, such as methotrexate and leflunomide,
use ineffective or no contraception (Ostensen et al
2007, Clowse 2010).
Starting a family when you have an
ARD

12.  Women with Rheumatoid Arthritis (RA) struggle to find
adequate information about pregnancy planning,
pregnancy and early parenting (Ackerman et al. 2015)
 More integrated care and better information and
counseling around pregnancy and early parenting for
women with ARD and other chronic diseases has been
recommended (12-17).
Support for women with ARDs with
starting a family

13.  However, there is very little research in this area - we
know little about what women with ARDs need to
optimise their well-being during family planning,
pregnancy and early parenting.
 Systematic review by Ackerman et al. 2016 found only
one RCT of an intervention specifically focusing on
supporting decisions about trying for a baby in
women with RA (Meade et al 2015)
The evidence…

14.  Systematic review
 Online survey for women with ARDs
 Qualitative interviews with women (n=10 to 15)
 Qualitative interviews with health professionals
(n=10 to 15)
 Event to reach consensus on research priorities
The STAR Family Study

15.  Randomised controlled trials of interventions to
support women with autoimmune rheumatic diseases
with pregnancy planning, pregnancy and/or early
parenting
 Two articles were included at the full text stage:
 side effects an acceptability of different forms of
contraception (along with contraception counseling) for
women with Lupus (Cravioto et al. 2014)
 supporting decisions about trying for a baby in women
with RA (Meade et al 2015)
STAR Systematic review

16.  Online survey for women with ARDs
 Aged 18-49, thinking about starting a family within the
next 5 years, are pregnant, have young children (<5)
and/or have had a pregnancy in the last 5 years
 N=121 so far….
 We asked about quality of life (AIMS-2), information
needs (ENAT) & other support received/wanted
 We included open text sections on challenges, what
has been helpful, what support women wish they
could have had.
STAR Online Survey: Participants

17.  40.7% currently wanted more information on their
autoimmune disease
STAR Online Survey: Information
needs – preliminary findings

18. STAR Online Survey – Information
needs (preliminary findings)
0.00% 10.00% 20.00% 30.00% 40.00% 50.00% 60.00% 70.00% 80.00%
What are the side effects of my medication
Accessing my test results
What might happen in the future
How I should take my medications
Ways the condition that affects my joints or muscles can be treated
How the condition that affects my muscles and joints might affect
my children or relatives
What type of condition I have
Ways to do things to wear my joints less
Getting enough rest and sleep
Taking the best medicine for me
Series1

19.  Identifying unmet needs
 Thinking of ways we could address these
 Forming research questions that can be tested
 Reaching a consensus on which questions should
have the highest priority
Today