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Table 3 Selected caller quotes for each of the themes and sub-themes identified across the three specified time periods

From: Long term impact of the WHI studies on information-seeking and decision-making in menopause symptoms management: a longitudinal analysis of questions to a medicines call centre

  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?”