Table 3.
Neurologist, PD nurse specialist, obstetrician, and patient experiences of PD during pregnancy
| Parkinson’s medication in pregnancy | |||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Case No. | No of cases | Aware of plans to conceive | Informed of pregnancy (trimester) | Medication during pregnancy | Medication changes during pregnancy | Post‐partum medication change | PD symptoms during pregnancy a) Motor b) Non‐motor | PD symptoms post‐partum a) Motor b) Non‐motor | Obstetric outcomes | Antenatal organisation and provision of care a) Communication between obstetrics & neurology b) Joint obstetric‐neurology review | Post‐partum organisation and provision of care a) Neurology informed of birth b) Inpatient neurology review |
| A. Neurologists | |||||||||||
| 1 | 1 | N | ‐ | ‐ | No change | ‐ | a) No change b) No change | a) No change b) No change | Live birth | a) Yes b) No | a) Yes b) Yes |
| 2 | 1 | N | 1st | No change | a) No change b) No change | a) No change b) No change | Live birth | a) Yes b) Yes | a) N/A b) N/A | ||
| 3 | 5 | Y | 1st | Levodopa alone (3) Withheld all medications (2) | Levodopa increased (1) | Return to usual regimen | a) Generally worse b) 1 patient became depressed | a) No change b) Mood changes | Live births | a) Yes b) Yes (2 cases), No (3 cases) | a) Yes b) Yes (2 cases) |
| 4 | 1 | Y | 1st | No change | No change | a) No change b) No change | a) No change b) No change | Live birth (twins) | a) Yes b) No | a) No b) No | |
| 5 | 1 | N | 1st | ‐ | No change | No change | a) No change b) No change | a) N/A b) N/A | TOP | a) No b) No | a) N/A b) N/A |
| 6 | 1 | N | 1st | Stalevo 300‐400mg /day | No change | Stalevo 400‐500mg/ day | a) Bradykinesia worse b) No change | a) Bradykinesia improved b) No change | Live birth | a) Yes b) No | a) No b) No |
| 7 | 1 | N | 1st | Levodopa | Initially stopped, re‐started. | No change | a) Worse without medication b) No change | a) No change b) No change | Live birth | a) Yes b) No | a) No b) No |
| 8 | 1 | N | 1st | ‐ | No change | No change | a) No change b) Psychiatric symptoms | a) No change b) No change | Live birth | a) Yes b) No | a) No b) No |
| B. PD Nurse Specialists | |||||||||||
| 1 | 1 | Y | 1st | All stopped except Sinemet 6.25mg tds | No change | N/A | a) No change b) No change | a) N/A b) N/A | SA 12 weeks | a) Yes b) ‐ | a) – b) N/A |
| 2 | 2 | N | 2nd | Madopar 100/25 tds | No change | No change | a) No change b) No change | a) No change b) No change | Live birth | a) Yes b) Yes | a) Yes b) No |
| 3 | 2 | Y + N | 1st in both | 1 stopped meds pre‐conception, 1 reduced pramipexole. | No change | Return to usual regimen | a) No change b) No change | a) Increased bradykinesia and off symptoms b) Anxiety, poor sleep | Live births | a) Yes b) Joint review with midwife. Found midwife disinterested in birth plan. | a) No b) No |
| 4 | 1 (2P) | N | 2nd | Levodopa. Cabergoline withheld. | Levodopa increased. | Cabergoline restarted (6 weeks). | a) No change b) No change | a) No change b) No change | Live births | a) Yes b) No | a) Yes b) Yes |
| 5 | 1 | N | 1st | Dopamine agonist withheld. | No change. | Nil | a) Bradykinesia, b) Fatigue. | a) No change b) No change | Live birth | a) Yes b) No | a) No b) No |
| C. Obstetricians | |||||||||||
| Case No. | No of cases | Stage of first involvement | Frequency of obstetric review | Change to regular schedule of antenatal obstetric care | Joint obstetric‐neurology antenatal review a) Joint review undertaken b) Would joint review be helpful? | Obstetric outcome | Immediate post‐partum care a) Inpatient neuro review b) Breastfeeding c) Length of hospital stay | Post‐partum outpatient obstetric review | |||
| 1 | 2 | Pre‐conception 1st | 3‐4 times | More frequent antenatal clinic review | a) Yes, b) Yes; ‘spare the women additional trips to hospital’ | Live births, VD. No complications | a)No, b)Unable, c) <3 days | a) No outpatient obstetric review | |||
| 2 | 2 | 2nd trimester | Twice | Increased visits, serial growth monitoring | a) No, b) Yes; ‘allow discussion between obstetrics and neurology’ | Live births, VD. No complications | a) Yes, b) – c) 4 days | a) No outpatient obstetric review | |||
| D. Women diagnosed with PD | ||||||
|---|---|---|---|---|---|---|
| Case No. | Patient demographic | Pregnancy management a) Medication, b) PD symptoms during pregnancy | Obstetric outcomes | Pregnancy care a) Provision of antenatal care b) Frequency of antenatal neurology review | Support and information a) Level of support from healthcare team, b) Provision of information during pregnancy | Post‐partum a) Breastfeeding, b) Attendance at mother and baby groups, c) Attendance at PD support groups, d) Medication change post‐partum |
| 1 | Diagnosed at 20 years, G1P1, FH ‐ | a) No change, Levodopa/carbidopa during pregnancy b) No change. | Live birth. EMCS, 37 weeks. | a) Consultant‐led, b) No change | a) Well‐supported, b) Inadequate | a) Breastfed for 8 weeks, b) Attended , c) Did not attend, d) No change |
| 2 | Diagnosed at 29 years, G2P2, FH + | a) No change. Cannot recall for 1st pregnancy. Requip XL in 2nd pregnancy, b) General worsening of motor symptoms. | Live birth. Live birth. VD, 36 weeks. | a) Consultant‐led, b) No change (6 monthly) | a) Well‐supported, b) Adequate | a) Not breastfed, b) Attended, c) Did not attend, d) Dose increased |
| 3 | Diagnosed at 25 years, G2P?a, FH + | a) Sinemet, Rasagiline, Ropinirole withheld. No medications taken. b) Improvement in motor symptoms, mood and energy. Most noticeable in 2nd trimester. | Live birth. VD, 9 weeks. Admitted week 38. Neonatal hypoglycaemia post‐partum; stayed 1 week in hospital. | a) Consultant‐led, b) No change (seen once during pregnancy) | a) Poorly supported, b) Inadequate | a) Breastfed for 1 week. Stopped to re‐start medication, b) Attended, c) Did not attend |
| 4 | Diagnosed at 44 years, G1P1, FH ‐ | a) None taken‐ no regular medication, b) PD presented during pregnancy and worsened in 2nd trimester. | Live birth. EMCS, 35 weeks. HELLP syndrome. Infant in NICU for 24 hrs. | a) Midwife‐led, b) No formal diagnosis until post‐partum | a) Well‐supported, b) Inadequate | a) Not breastfed, b) Attended, c) Did not attend |
| 5 | Diagnosed at 26 years, G2P1, FH ‐ | a) Cabergoline and orphenadrine withheld. Madopar 50/12.5mg during pregnancy b) Increased tremor. | Stillbirth, 24 weeks Live birth. AD, full term | a) Midwife‐led, b) More frequent (seen 3 times) | a) Unsure, b) Inadequate | a) Not breastfed, b) Did not attend, c) Did not attend, d) Resumed medication |
| 6 | Diagnosed at 33 G1P1, FH ‐ | a) No regular medication and none during pregnancy. PD diagnosed in early pregnancy. b) Worsening bradykinesia, UL tremor, dexterity, sialorrhoea. Most marked 3rd trimester | Live birth. VD, 41 weeks. Maternal pyrexia post‐partum; given IV antibiotics overnight. | a) Consultant‐led b) First neurology consultation at 14 weeks; seen several times thereafter | a) Well‐supported b) Unsure | a) Not breastfed. b) Attended c) Attended d) Sinemet initiated |
| 7 | PD Diagnosed at 48 G1P1, FH ‐ | a) No regular medication. PD diagnosed post‐partum. b) Worsening; tremor in 1st and 3rd trimesters. Micrographia. | Live birth. AD, 40 weeks. Neonatal respiratory difficulties‐ infant in NICU for 36 hrs. | a) Consultant‐led b) First neurology consultation at 12 weeks; no regular neurology review during pregnancy. Formal diagnosis post‐partum | a) Well‐supported. b) Inadequate | a) Breastfed for 8 months. Stopped to start medication b) Attended c) Did not attend |
a
Outcome of second pregnancy not specified by respondent.
PD, Parkinson's disease; N/A, not applicable; tds, three times daily; SA, spontaneous abortion; 2P, two pregnancies; VD, vaginal delivery; G, gravidity; P, parity (eg, G1P1 = gravida 1, para 1); FH −, family history; FH +, family history; UL, upper limb; EMCS, emergency caesarean section; HELLP, haemolysis, elevated liver enzymes, low platelets syndrome; NICU, neonatal intensive care unit; AD, assisted delivery.