We are expanding our Patient & Public Advisory Group

Are you interested in finding out more about health research?

Do you have two or more long term health conditions, and recent experience of pregnancy and birth?

We’re expanding the MuM-PreDiCT patient and public involvement advisory group and are looking for people who can help us shape this exciting research project.

Six amazing women – Sara, Jennifer, Charis, Siddequah, Nicola and Mary – joined the group last year and their insights and priorities were an important part of our successful bid for funding for the research.

Now we want to expand the group to make sure we cover pregnant women and birthing people’s experiences of maternity care and having two or more long term health conditions in all four countries of the UK, and from a variety of backgrounds. We particularly want to hear from people who:

  • Live in Northern Ireland, Wales or Scotland
  • Were born in another country, such as Poland or Pakistan
  • Live in very rural areas, with a significant distance to travel to see medical specialists
  • Are of Black or Mixed ethnic group
  • Have experienced health issues such as cancer, deafness, heart disease, skin conditions, blood disorders such as sickle cell disease, being HIV positive or having an organ transplant

The group meets (virtually online) 3 or 4 times per year to find out how the research is progressing and discuss issues arising from this. All members are paid £25 per hour for attending. We also have a WhatsApp group where we keep in touch between meetings.

To find out more about the group, or to express an interest in joining, email r.plachcinski@bham.ac.uk.

To see the full list of health conditions we are studying see this blog post https://mumpredict.org/79-health-conditions-defining-2-or-more-long-term-health-conditions-in-pregnancy/

MuM-PreDiCT gets funded!

We are very pleased to announce that MuM-PreDiCT has been successful in the funding call from the Strategic Priority Fund (SPF): Tackling multimorbidity at scale: Understanding disease clusters, determinants & biological pathways (grant number MR/W014432/1).

The Strategic Priority Fund “Tackling multimorbidity at scale” programme is delivered by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) in partnership with the Economic and Social Research Council and in collaboration with the Engineering and Physical Sciences Research Council.

We would like to extend our heartfelt gratitude to our amazing patient and public involvement (PPI) advisory group and PPI co-investigators, and every research team member for all the hardwork.

We look forward to embarking on this exciting journey!


Links:

Multimorbidity / multiple long-term conditions (MLTC) – Research – Medical Research Council (ukri.org)

New study aims to improve healthcare for pregnant women with multiple health conditions (birmingham.ac.uk)

Funding to support key research into multimorbidity – School of Medicine News (st-andrews.ac.uk)

New study aims to improve healthcare for pregnant women with multiple health conditions – Keele University

News in Brief – new Life Sciences Chair, anti-racism campaign launched, medical director update – Leading Healthcare

Examples of pre-existing long-term physical / mental health conditions in pregnant women

These are some examples of long-term physical or mental health conditions that pre-existed before pregnancy. All long-term health conditions are important. The list is not exhaustive. We apologise if your health condition is not listed here.

Cancers

  1. All cancers
    • Solid cancers
    • Haematological cancers
    • Metastatic cancers
    • Exclude basal cell carcinoma

Cardiovascular disease

  1. Hypertension
  2. Ischemic heart disease & Myocardial infarction (heart attack)
    • Myocardial infarction (thrombosis)
    • Myocardial infarction (dissection)
  3. Heart failure
  4. Stroke
    • Transient ischemic attack
    • Ischemic stroke
    • Haemorrhagic stroke
    • Unspecified stroke
  5. Atrial fibrillation
  6. Congenital heart disease
  7. Valvular heart disease (mitral, aortic, mixed)
    • Congenital
    • Acquired (e.g Rheumatic valvular disease)
  8.  Cardiomyopathy
    • Congenital
    • Acquired

Dermatology

  1. Eczema
  2. Psoriasis
  3. Autoimmune skin disease
    • Vitiligo
    • Alopecia areata
  4. Other dermatological conditions
    • Seborrheic dermatitis
    • Rosacea
    • Hidradenitis suppurativa
    • Lichen planus

Ear, Nose, Throat

  1. Profound deafness
  2. Allergic rhinitis & allergic conjunctivitis

Eye

  1. Inflammatory eye disease
    • Scleritis & episcleritis
    • Anterior uveitis
    • Posterior uveitis
  2. Cataract
  3. Diabetic eye disease
  4. Severe blindness
  5. Retinal detachment

Gastroenterology

  1. Irritable bowel syndrome
  2. Inflammatory bowel disease
    • Ulcerative colitis
    • Crohn’s disease
  3. Coeliac disease 
  4. Chronic liver disease
    • Chronic hepatitis B & C
    • Alcoholic liver disease
    • Autoimmune liver disease
    • Cirrhosis
    • Non-alcoholic fatty liver disease
  5. Peptic ulcer
  6. Gall stones (cholelithiasis)

Gynaecology

  1. Polycystic ovarian syndrome
  2. Endometriosis
  3. Leiomyoma (fibroids)
  4. Infertility

Haematology

  1. History of venous thromboembolism (VTE, blood clots)
    • Deep vein thrombosis
    • Pulmonary embolism
    • Other VTE
  2. Primary thrombocytopenia
  3. Haemophilia 
  4. Sickle cell anaemia
  5. Pernicious anaemia

Mental health

  1. Depression
  2. Anxiety
    • Anxiety
    • Panic disorder
    • Phobia disorder
    • Post traumatic stress disorder
  3. Serious mental illness 
  • bipolar affective disorder
  • schizophrenia
  • psychosis
  1. Eating disorder
  2. History of alcohol use disorder (misuse / dependence)
  3. History of substance misuse 
  4. Others
    • Obsessive compulsive disorder (OCD)
    • Self-harm
    • Personality disorder
    • Dissociative disorder 

Neurodevelopmental disorders

43. Neurodevelopmental disorder

  • Learning disability
  • Attention deficit hyperactivity disorder
  • Autistic spectrum disorder

Rheumatology

  1. Systemic lupus erythematosus
  2. Spondyloarthritis
    • Psoriatic arthritis
    • Ankylosing spondylitis
  3. Inflammatory arthritis
    • Rheumatoid arthritis
    • Sjogern’s syndrome
    • Raynaud’s syndrome
    • Systemic sclerosis
    • Primary systemic vasculitis
  4. Ehler’s Danlos Syndrome (EDS) Type 3 (Hypermobile EDS)

Orthopaedic

  1. Scoliosis
  2. Vertebral disorder
    • Intervertebral disc disorder
    • Spondylosis
    • Spondylolisthesis
    • Collapsed vertebrae
    • Spinal stenosis
  3. Chronic back pain
  4. Osteoporosis 
  5. Osteoarthritis

Neurology

  1. Migraine
  2. Other chronic headache (including cluster headache, tension headache, other chronic headache)
  3. Epilepsy
  4. Multiple sclerosis
  5. Spina bifida
  6. Idiopathic intracranial hypertension
  7. Peripheral neuropathy
  8. Other neurological conditions / musculoskeletal disorders
    • chronic fatigue syndrome / myalgic encephalomyelitis
    • fibromyalgia
    • chronic pain syndrome (includes chronic regional pain syndrome, myofascial pain syndrome)

Respiratory

  1. Asthma
  2. Chronic obstructive pulmonary disease
  3. Obstructive sleep apnoea
  4. Pulmonary fibrosis, interstitial lung disease
  5. Pulmonary hypertension
  6. Bronchiectasis
  7. Cystic fibrosis
  8. Sarcoidosis

Renal

  1. Chronic kidney disease 
  2. Urinary tract stones

Endocrine

  1. Diabetes mellitus
  2. Thyroid disorder
  3. Pituitary disorder
  4. Adrenal benign tumour
  5. Hyperparathyroidism

Other

  1. Human immunodeficiency viral (HIV) infection / AIDS
  2. Turner’s syndrome
  3. Marfan’s syndrome
  4. Solid organ transplant 

Epidemiological study: Operationalising multiple long-term conditions

Multiple long-term conditions was defined by the presence of two or more pre-existing long-term physical or mental health conditions that were present before pregnancy. Pregnancy related conditions (e.g. gestational diabetes) were not included.

For our epidemiological study, we operationalised multiple long-term conditions in pregnancy using the above list of 79 health conditions.

A list of long-term health conditions was first identified from existing literature, in particular based on the work commissioned by Health Data Research UK on multiple long-term conditions conceptualisation [1], and a recent publication on prevalence of different conditions in the UK [2]. This list and phenome definitions were refined and harmonised through workshops with our research advisory group, consisting of women representatives, clinicians from general practice, obstetrics, maternal medicine, psychiatry, public health, and data scientists. Health conditions were selected on the following basis: (i) prevalence; (ii) impact on pregnancy outcomes; (iii) considered important by women; and (iv) recorded in the study datasets.

References

[1] Ho IS, Azcoaga-Lorenzo A, Akbari A, Black C, Davies J, Hodgins P, Khunti K, Kadam U, Lyons RA, McCowan C, Mercer S, Nirantharakumar K, Guthrie B. Examining variation in the measurement of multimorbidity in research: a systematic review of 566 studies. Lancet Public Health. 2021 Aug;6(8):e587-e597. doi: 10.1016/S2468-2667(21)00107-9. Epub 2021 Jun 22. PMID: 34166630.

[2] Kuan V, Denaxas S, Gonzalez-Izquierdo A, Direk K, Bhatti O, Husain S, et al. A chronological map of 308 physical and mental health conditions from 4 million individuals in the English National Health Service. The Lancet Digital health. 2019;1(2):e63-e77. Epub 2019/10/28. doi: 10.1016/s2589-7500(19)30012-3. PubMed PMID: 31650125; PubMed Central PMCID: PMCPMC6798263.

Phenome definitions (physical and mental health conditions, active multimorbidity)

Github: For Read codes, ICD-10 codes and phenome definitions

Video recordings from the 18th Feb 2021 dissemination webinar

We would like to thank our PPI representatives Mary and Jennifer, PPI co-applicants Rachel and Ngawai, our event support person Edward and all the collaborators for making this webinar successful. Special thanks to Edward Bywater for preparing these video clips.

Webinar 18th Feb 2021

Event: Webinar on research to improve care for pregnant women with 2 or more long-term physical or mental health conditions

Date: Thursday, 18th February 2021

Time: 0930am – 1130am (UK time)

Link to register: https://www.eventbrite.co.uk/e/shaping-research-for-pregnant-women-with-2-or-more-long-term-conditions-tickets-138491709431

*The webinar will be recorded and presentations will be made available on our website after the event.

Agenda:

– Introduction: why is this research needed

– Our latest findings

– Next step

– Live Q&A

Who is this event for?

– women with 2 or more long-term physical or mental health conditions and their partners

– maternity activists and educators

– health care professionals

– researchers, research funders

– policy makers

– commissioners

– public health

About us

The MuM-PreDiCT consortium is developing research to study and improve maternity care for pregnant women who are managing two or more long-term health conditions.

The consortium is funded by the Medical Research Council (UK) consolidator grant and supported by Health Data Research UK.

It is a collaboration with seven academic institutions and NHS partners across all four countries in the UK.

Our team includes experts in Data Science, Obstetrics, Psychological Medicine, Primary Care and Public Health alongside women with experience of having two or more health conditions that presented before pregnancy.