Table 3 Selected caller quotes for each of the themes and sub-themes identified across the three specified time periods
Time 1 – QMH Pre-WHI 2002 (Jun 1996–9 Jul 2002) | Time 2a –– QMH Immediately post WHI 2002 publication (10 – 26 July 2002) extracted from Time 2 | Time 3 – NPS Medicines Line (Sep 2002 – Jun 2010) | |
|---|---|---|---|
Total cases | 742 | 126 | 961 |
Cases with narratives (Q) | 165 | 70 | 514 |
Cases with > 1 theme | 229 | - | 547 |
Denominator | 229 | 70 | 547 |
Themes | |||
1. Safety concerns | n = 136 (59.4%) | n = 69 (98.6%) | n = 357 (65.3%) |
Risk concern – breast cancer | Nil | 22 (31.4%) 54-year-old (yo) woman “I stopped my HRT yesterday after I read about it causing breast cancer. Today I feel really awful. – what should I do?” 59 yo woman “I have been using HRT for years but just found out about it being linked to breast cancer. I stopped it straight away; but is it too late? I’m so worried as my sister is already battling breast cancer.” | Nil |
Reassurance to withdraw (any safety concern) | 12 (5.2%) 60 yo woman “I had a hysterectomy and have been on Provera® (medroxyprogesterone) and Premarin® (conjugated estrogens) for three years. My doctor says the drugs aren’t prescribed any more. Why not prescribed now? Should I wean? | Nil | 26 (4.7%) 50 yo woman “Can she stop taking Livial® (tibolone) abruptly after being on it for seven years?” |
Risk concern –in women who had a hysterectomy | 5 (2.2%) 50 yo woman “I have been on Provera® 5 mg (medroxyprogesterone) and Premarin® 0.625 mg (conjugated estrogens) for several months for menopausal symptoms. I feel much better but concerned about HRT and breast cancer story. I have no family history of breast cancer. Is there a risk of breast cancer with HRT use?” | 6 (8.6%) 63 yo woman “I have had a hysterectomy, do these reports apply to me? What should I do? Can I stay on my HRT?” | 27 (4.9%) 62 yo women “I had hysterectomy and has been used HRT since many years ago. I used Premarin® (conjugated estrogens) 0.3 cut in half due to 'scare in America'. I ran out the medicine and doctor in Kenmore clinic prescribes me Livial. I don’t know if Livial tablet, is it HRT therapy? Is it for osteoporosis?” |
Risk /safety concerns specified and unspecified symptoms mentioned | 5 (2.2%) 52 yo woman On tamoxifen for treatment of breast cancer “I am going ‘nuts’ with symptoms of vaginal dryness but my doctor said I just has to put up with it! What can I try instead?” | 2 (2.9%) 60 yo male ringing about wife who died of heart failure at 59 yo “My wife was taking HRT and she died of heart failure. Did she die because of her HRT?” Example of a ‘general concern’ 68 yo woman “I have been using Ovestin vaginal cream as HRT. After hearing about the danger of HRT on the radio I’m really worried. Do these HRT risks apply to my Ovestin?” | 11 (2.0%) Symptoms described due to hormone imbalance (n = 184) e.g. insomnia, VMS, headache, depression, hirsutism 51 yo woman “Can any of my medicines cause migraines: HRT, Livial® (tibolone)?” Misc (non-hormonal) e.g. rash 62 yo woman “Can I having an allergic reaction to Ovestin® (estriol) if I have a prickly feeling on my labia?” |
Clarifying/quantifying risk | Nil | Nil | 5 (0.9%) 71 yo woman “How much risk is there for me to get breast cancer or dementia when using Ovestin® (estriol) vaginal cream?” |
Clarification of symptom cause | 46 (20.1%) 56 yo woman “I have been on HRT for a while. My blood pressure was 170/100 3 weeks ago, and my last measurement was 150/100. I don’t experience any headaches. Can my HRT cause hypertension?” | Nil | 89 (16.3%) 56 yo woman “Can Premarin® (conjugated estrogens) cause agitation, depression and anxiety?” 52 yo woman “Can Black Cohosh cause a skin rash” |
Balancing risk vs. benefit to either use or withdraw | 26 (11.4%) 58 yo woman “I have hot flushes, and mood swings. My doctor pushed me to use HRT but I refuse to take it. We have a right to choose an alternative. Can you tell me the risks and benefits of HRT?” | 26 (37.1%) 58 yo woman “I have been on Kliogest (estradiol/ norethisterone) for 2 years for hot flushes and for my bones. I’ve just read that HRT can cause harm but it really helps me. Should I stay on my HRT or not? Can you help?” | 19 (3.5%) 61 yo woman ”What are the risks and benefits of Livial® (tibolone) used long term?” |
Safety concern – seeking to change to an alternative product | 1 (0.4%) 48 yo woman Treated for thyroid carcinoma; GP believes this caused early menopause. Tried HRT but found side effects intolerable; lowering the dose didn’t help “.. I was then changed to Vagifem (estradiol) pessaries but am now experiencing vaginal bleeding. Is this normal? What can I try next?” | 12 (17.1%) 67 yo woman “I’ve been on HRT for 15 years for osteoporosis and my ‘heart’. I read that my drug can cause cancer. Would herbal HRT or a patch be safer and worth a try instead? “ | 42 (7.7%) 50 yo woman “Could swapping from Kliogest (estradiol + norethisterone) to Premia® (conjugated estrogens + medroxyprogesterone) ease headaches and breakthrough bleeding?” |
Reassurance to use or to use with other drugs or comorbidities | 41 (17.9%) 65 yo woman “I have depression, will taking estrogen help?” 61 yo woman “I used HRT since 1987 and it helps but now have been diagnosed with anxiety. I want to try HRT patches instead? Is this OK to use? | 1 (1.4%) 62 yo woman “Can I use HRT with my thyroid medicines?” | 138 (25.2%) 58 yo woman “What is the interaction between Estradot® (estradiol) and raloxifene?” 47 yo woman “Do I need both estrogen and progesterone to regulate estrogen levels?” |
2. Pragmatics of use | n = 41 (17.9%) | Nil | n = 72 (13.2%) |
General information | 23 (10.0%) 52 yo woman “Can you give me more information on HRT?” | Nil | 18 (3.2%) 52 yo woman “Can you give me some information on Femoston® (estradiol + dydrogesterone)?” |
Logistics | 7 (3.1%) 52 yo woman “I used HRT gel in the UK and it was great, is there any HRT gel in Australia?” | Nil | 34 (6.2%) 65 yo woman “Is there a generic for Livial® (tibolone)?” |
Seeking a strategy to use | 11 (4.8%) 48 yo woman 'Regarding HRT, do Premarin® (conjugated estrogens) and Provera® (medroxy-progesterone) have to be taken together? | Nil | 20 (3.7%) 85 yo woman “How do I use Ovestin® (estriol) pessaries?” |
3. Therapy options | n = 32 (14.0%) | n = 1 (1.4%) | n = 83 (15.1%) |
Efficacy considerations | 20 (8.7%) 50 years old male Wife on Promensil and it helped her hot flushes Have you heard how wonderful Promensil® (red clover) is for menopause symptoms?” | Nil | 39 (7.1%) 42 yo woman “Is Kliovance® (estradiol + norethisterone) ok to reduce flow?” 62 yo woman Are chasteberry and safe effective in treating menopausal symptoms? |
Symptom management | 11 (4.8%) 47 yo woman “My mother and sister had osteoporosis. How can I prevent osteoporosis?” | Nil | 18 (3.3%) 70 yo woman “What can I use to improve my libido?” |
Dissatisfaction with previous treatment—either to improve effectiveness or as experiencing side effects | 1 (0.4%) 58 yo woman had a hysterectomy; previously tried Premarin® (conjugated estrogens) but it caused dizziness. She now takes Menorest (estradiol) but has now developed sore “Can I use Remifemin® (black cohosh) as an alternative to HRT?”** | 1 (1.4%) 75 yo woman “Can I use Fosamax® (alendronic acid)as an alternative to hormone replacement therapy?” | 5 (0.9%) 63 yo woman “What are the options available for estrogen replacement therapy if estradiol 2 mg per day isn’t working?” |
Availability | Nil | Nil | 21 (3.8%) 63 yo woman “Ogen® (estropipate) has been discontinued. So what alternative medicines to Ogen® are there?” 55 yo woman “What is the closest estrogen form that I can use if estropipate is taken off the market?” |
4. Regimen comparison | n = 20 (8.7%) | Nil | n = 35 (6.4%) |
Comparison | 72 yo women had hysterectomy and had been on HRT for 27 years. Doctor changed HRT from Estigyn 0.01mcg to Ogen 0.625 mg. She became nauseous an hour after taking Ogen “Is my Ogen® (estropipate) dose comparable to Estigyn® (estradiol)?” | Nil | 53 yo woman “Is Livial® (tibolone) safer than Progynova® (estradiol) for me?” |