What knowledge would support improving the management of teenagers with dysmenorrhoea in primary care?

The aim of this project is to improve the information and resources available to support teenagers experiencing painful periods.

Period pain affects up to 93% of teenagers. Approximately one third of them experience severe pain, causing them to miss school and social opportunities. Although treatments are available, most do not seek medical help. This should improve after 2020, when menstrual well-being will be taught in all English schools.

However, despite the size and scale of the problem, there is little evidence to guide treatment. The long-term impacts or outcomes of having period pain as a teenager are not clear. While it is important that teenagers with period pain get help in order to reduce their pain and improve school attendance, they also need to be seen in case something (such as endometriosis) is causing their pain.

Endometriosis is the abnormal presence of womb-lining tissue outside of the womb. Endometriosis affects approximately 10% of adult women and contributes to infertility and chronic pelvic pain. It is believed to be under-recognised in teenagers, with concerns that if diagnosis or treatment are delayed then the condition might get worse. Documented unknowns in endometriosis in teenagers includes not knowing what the likely long-term outcomes might be, whether treatment in adolescence will make a difference to long-term outcomes, and what the ideal management is. There is developing evidence that adolescents with endometriosis may present with different symptom patterns from adult women.

Even though primary care is where many young people in the UK will seek help for their period pain, there is currently no primary care evidence or resources to help GPs support teenagers with period pain. GPs and young people face uncertainty about when to consider endometriosis in adolescents and how best to care for them when they do. Exploring this is vital to support informed shared-decision making about care, treatment and referral for adolescents in primary care.

This project will use the QResearch primary-care database to:

o Record the number of teenagers with period pain who attend primary care, the treatments they receive, and look for patterns which suggest un-met care needs.

o Explore long-term outcomes for teenagers attending primary care with period pain.

oExplore what symptoms teenagers with endometriosis report to GPs.

While we are exploring these patterns of symptoms in teenagers, we will be taking account of other factors that might influence them so that we make sure we are presenting the most accurate levels of risk (or significance) of what we find. We will report all of the factors and conditions we have included, so that it is clear what we have done in our work. For example, we will look carefully at other conditions or factors that might be relevant to how often period pain or endometriosis happens in teenagers by looking at our findings adjusted by age, BMI or for other conditions that can go alongside these experiences (which might include asthma, migraines, heavy period bleeding, and depression).

Informed by what we find out in this study, we will then work to explore teenage perspectives on period pain, including those with and without diagnosed endometriosis. I will interview teenagers to explore what they think matters when it comes to care, services, and communication about period pain. With their input, I will write accessible summaries about important aspects of painful periods, illustrated with quotations from the interviews. These will create a new section on a widely used health experience website (Healthtalk.org).

This study will produce:

o symptom focussed evidence-based resources for primary care, to support clinicians caring for
teenagers with dysmenorrhoea. This was identified as a resource gap by GPs in my study:
Understanding GPs perspectives, experiences and challenges when supporting patients with
possible endometriosis in Primary Care.

o a shared decision-making guide, including an infographic, to support clinicians and teenagers
with period pain.

General Practice data: Yes

GP system-held data regarding:

Demographic variables:

Age (continuous variable)
Geographical region in England (categorical, 10 regions)
Townsend deprivation quintile
Ethnicity (categorical, 9 categories)
Lifestyle factors:
Smoking status (categorical)
Body mass index (continuous)

Primary Exposure:

Dysmenorrhoea

Primary outcomes:

Endometriosis

Secondary Outcomes:

Sub-fertility (note cross-referenced with pregnancy outcomes, described separately below)
Pelvic pain
Adenomyosis.
On-going menstrual pain

Potential confounders or co-variates: (gynaecological symptoms):

Dyspareunia (superficial, deep, not otherwise specified)
Post-coital bleeding
PCOS
Menorrhagia and heavy menstrual bleeding.
Dysfunctional uterine bleeding
Irregular menstrual cycles.
Pelvic inflammatory disease
Ovarian cysts
Congenital uterine or genital tract anomalies (developmental disorders of the female genital tract)

Potential confounders or co-variates: (non-gynaecological symptoms):

Depression
Anxiety
Irritable bowel syndrome
Diarrhoea
Constipation
Nausea
Irritable bladder
dysuria
Bladder pain syndrome/Interstitial cystitis
Cystitis and UTI
Rectal or anal pain
Dyschezia
Rectal bleeding
Migraine
Low back pain
Fatigue
Bloating
Fibromyalgia

Pregnancy related outcomes:

Pregnancy
Live birth
Ectopic pregnancy

Medication data:

Combined hormonal contraception
Progesterone only contraceptive pills
IUS prescriptions
Sub-dermal contraception codes
Gn-rh analogues (prescriptions issued by GP practice)
Prescribed non-steroidal anti-inflammatory medication (naproxen, mefanemic acid, ibuprofen, cox 2)
Analgesics: codeine, pregabalin, gabapentin, amitryptiline
Anti-depressants (SSRI).

Referral data:

Referrals from primary care to:

Gynaecology
Fertility services
Pain services
Pelvis ultrasound scan

Dr Sharon Dixon - University of Oxford

Professor Julia-Hippisley-Cox - University of Oxford

Dr Martina Patone - University of Oxford

Dr Katy Vincent - University of Oxford 

Dr Jenny Hirst - University of Oxford

Professor Sue Ziebland - University of Oxford

Emma Cox - Endometriosis UK (CEO)

Dr Tom Ranger - University of Oxford