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Improving support for women with
musculoskeletal conditions during
pregnancy, pregnancy planning, and early
parenting
Dr R...
 Sumilo et al. (2012) analysed data from
18,231 mother-child pairs from the
Millennium Cohort Study
 9.4% of women who h...
 About half of pregnancies for women
with LLTIs were unplanned (Sumilo et al.
2012)
 Higher risk of pre-term birth, more...
 BUT the VAST MAJORITY of women with disabilities have
positive pregnancy and parenting outcomes!
 As well as condition ...
 35% - 51% of people in the UK report chronic
pain (Fayaz et al. 2016)
 10-14% of adults in the UK report having
moderat...
 Musculoskeletal problems have a high level of interference
with people’s daily lives, impacting on:
 physical functioni...
 Precise numbers unknown, but may people
with chronic pain are responsible for the
care of young children (Armistead et a...
 HOWEVER, there were a number of
practical solutions that women came
up with that could help with many of
these challenge...
 Approx. 2-3% of women of reproductive age report having
some form of arthritis (Welsh Health Survey Data). This is
equiv...
 Women with ARDs are:
 less likely to have children
 have fewer children
 have longer intervals between pregnancies
 ...
 Around a third of women with rheumatoid arthritis
who are taking medication that is contraindicated in
pregnancy, such a...
 Women with Rheumatoid Arthritis (RA) struggle to find
adequate information about pregnancy planning,
pregnancy and early...
 However, there is very little research in this area - we
know little about what women with ARDs need to
optimise their w...
 Systematic review
 Online survey for women with ARDs
 Qualitative interviews with women (n=10 to 15)
 Qualitative int...
 Randomised controlled trials of interventions to
support women with autoimmune rheumatic diseases
with pregnancy plannin...
 Online survey for women with ARDs
 Aged 18-49, thinking about starting a family within the
next 5 years, are pregnant, ...
 40.7% currently wanted more information on their
autoimmune disease
STAR Online Survey: Information
needs – preliminary ...
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...
 Identifying unmet needs
 Thinking of ways we could address these
 Forming research questions that can be tested
 Reac...
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Improving support for women with musculoskeletal conditions during pregnancy, pregnancy planning, and early parenting

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

Publicada em: Saúde e medicina
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Improving support for women with musculoskeletal conditions during pregnancy, pregnancy planning, and early parenting

  1. 1. Improving support for women with musculoskeletal conditions during pregnancy, pregnancy planning, and early parenting Dr Rhiannon Phillips
  2. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 17.  40.7% currently wanted more information on their autoimmune disease STAR Online Survey: Information needs – preliminary findings
  18. 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. 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

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