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Women’s Health

Cardiovascular Medicine, Chronic Disease, Patient Care, Women's Health

Welcome to your new country: A heart patient on her “travels” with heart disease

Welcome to your new country: A heart patient on her "travels" with heart disease

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We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from heart patient Carolyn Thomas

My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.

I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.

Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.

And that was the day I moved far, far away to a different country.

Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from hospital.

I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.

Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.

Where once I had been competent, I now felt unsure.

Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.

And my worried family and friends couldn’t even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was normal again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.

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Global Health, In the News, Medical Education, Pregnancy, Women's Health

Project aims to improve maternal and newborn health in sub-Saharan Africa

Project aims to improve maternal and newborn health in sub-Saharan Africa

5567854013_6bd1e2b76b_zIn sub-Saharan Africa, maternal and neonatal outcomes are some of the worst in the world. What would happen to those numbers if 1,000 new obstetrician/gynecologists were trained with state-of-the-art educational materials in the region over the next ten years? The 1000+OBGYN Project, a collaborative training effort between American and African universities, aims to do just that.

The University of Michigan’s Open.Michigan initiative, in partnership with the UM Medical School’s Department of Obstetrics and Gynecology and Department of Learning Health Sciences, just released four new collections into the 1000+OBGYN Project’s open-access database, thanks to a grant from the World Bank.

A UM press release published today describes the new contributions, which cover a diverse range of subjects, including abnormal uterine bleeding, pregnancy complications, vaginal surgeries, pelvic masses, newborn care, postpartum care and family planning. The materials are all free, publicly available, and licensed for students, teachers and practitioners to modify according to their own curricular context.

Frank Anderson, MD, MPH, associate professor in the UM Department of Obstetrics and Gynecology and director of the 1000+OBYGN Project, comments in the release:

There is an urgent need to train Obgyns [sic] in sub-Saharan Africa, but their institutions don’t always have access to the same body of educational materials as doctors in developed countries have… Many newborn and maternal deaths are preventable. We want to ensure that future Obgyns in low resource countries have access to the same high-quality learning materials available here so they are equipped to provide the best care possible for mothers and babies.

The project hopes to overcome local barriers to good education, such as availability of training materials, licensing costs, and unreliable internet access. To make the materials available offline, the initiative partnered with the Global Library of Women’s Medicine, which compresses research onto USB flash drives and distributes them globally, particularly to women’s health professionals in Africa.

Previously: Countdown to Childx: Global health expert Gary Darmstadt on improving newborn survival, Gates Foundation makes bold moves toward open access publication of grantee research, Improving maternal mortality rate in Africa through good design and Using family planning counseling to reduce number of HIV-positive children in Africa
Photo by DFID – UK Department for International Development

Cancer, In the News, Patient Care, Research, Women's Health

Breast cancer survivors shown to benefit from quality-of-life interventions

Breast cancer survivors shown to benefit from quality-of-life interventions

6223587547_f7418ef489_zHow do you bounce back after breast cancer? As outlined in a recent Dartmouth press release, a quarter to a third of breast-cancer survivors have trouble re-adjusting to life and “peak performance” once their health is stabilized. But new research shows that rehabilitation interventions can have a significant positive effect for these women.

The release goes on to say:

Almost one-third of breast cancer survivors experience difficulty after treatment when trying to resume previous levels of work, leisure, physical, and social activities. This is particularly true of women in young to middle adulthood. For them, cancer diagnosis comes at a time of high demands for peak performance at work and home, and correspondingly less flexibility in time and schedule.

The Dartmouth group’s rehabilitation intervention was designed to help women find ways to accelerate recovery and engage in health-promoting activities. The study considered feasibility, acceptability to survivors, and efficacy in helping women to meet their goals.

Women were highly satisfied with the telephone-delivered intervention and primarily used the program to set weekly goals regarding exercise, work, better nutrition, taking care of themselves and their homes, managing stress, and social activities. The women met 71% of their weekly goals and showed improvements in quality of life, active coping, planning, and reframing.

Studies on the intervention, published in the Journal of Psychosocial Oncology and in Occupation, Participation, and Health, were led by Kathleen D. Lyons, ScD, professor of psychiatry at Dartmouth’s Geisel School of Medicine and affiliated with its Norris Cotton Cancer Center, which funded the research. In total 48 women were enrolled, and the results were clear enough to warrant further research into similar recovery interventions that don’t focus on pain-management.

“It was a complete pleasure and privilege to work with the study participants and give them a structure and some support while they found ways to create healthy and productive routines and lifestyles,” Lyons says in the release.

Previously: Breast cancer patients are getting more bilateral mastectomies – but not any survival benefit, Red Sunshine: One doctor’s journey to surviving stage 3 breast cancer, Wellness after cancer: Stanford opens clinic to address survivors’ needs and A call for rehab services for cancer survivors
Photo by DixieBelleCupcakeCafe

Global Health, Mental Health, Research, Sexual Health, Women's Health

Exploring links between domestic violence, depression and reproductive health

Exploring links between domestic violence, depression and reproductive health

abused womanIt’s no surprise that domestic violence has effects that ripple outward in a victim’s life, beyond physical traces of abuse. Research into just what those effects are can help physicians provide better counseling and treatment, and two new studies show striking correlations between domestic violence, mental illness, and contraception use.

The first study, published in Depression and Anxiety, enrolled a nationally representative sample of more than 1,000 mothers with no previous history of depression, and assessed them over 10 years. It was headed by Isabelle Ouellet-Morin, PhD, researcher at the University of Montreal. Thirty-three percent of the women reported being the victim of violence from their partner, and these women had a twofold increase in their risk of suffering from new-onset depression (after controlling for childhood maltreatment, socioeconomic deprivation, antisocial personality, and young motherhood). Compared with women who had never been victims of violence, women who were abused both in childhood and adulthood were 4-7 times more likely to suffer from depression. The results were similar for psychotic symptoms.

Louise Arseneault, PhD, co-author and professor of developmental psychology at Kings College London, is quoted in PsychCentral:

Health professionals need to be very aware of the possibility that women who experience mental health problems may also be the victims of domestic violence and vice versa. Given the prevalence of depression in these victims, we need to prevent these situations and take action. These acts of violence do more than leave physical damage; they leave psychological scars as well.

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Aging, Chronic Disease, Events, Health Policy, Neuroscience, Public Health, Women's Health

Alzheimer’s forum with Rep. Jackie Speier spurs conversation, activism

Alzheimer's forum with Rep. Jackie Speier spurs conversation, activism

10776927963_3dd8d244da_zWhat happens when you bring together a woman with Alzheimer’s, a congresswoman, a policy expert and two doctors? No, this isn’t a joke – but an intro to an informative and wide-ranging discussion on Alzheimer’s disease and its effects on women.

“I was pretty ignorant until fairly recently,” said Rep. Jackie Speier (D-CA), who organized the forum Alzheimer’s: A women’s health issue held in San Mateo, Calif. yesterday. She also penned an opinion piece published recently in the San Francisco Chronicle. “I had no idea that two out of three people diagnosed with Alzheimer’s are women.”

Although it’s the fifth leading cause of death in California, Alzheimer’s receives much less federal money than many other major diseases, she said.

To spur conversation and provide information, Speier invited Cynthia Ortiz Guzman, a former nurse who suffers from Alzheimer’s; Ruth Gay, director of public policy and advocacy for the Alzheimer’s Association; Elizabeth Landsverk, MD, medical director of ElderConsult, and Stanford’s Michael Greicius, MD, MPH, an associate professor of neurology and neurology and medical director of the Stanford Center for Memory Disorders. Greicius has done research on women’s risk of the disease.

Nearly all of the 150-plus people who attended the forum had a loved one who suffered from Alzheimer’s. “We still have a good life, but there is so much that needs to be done,” Guzman told them.

Greicius and Landsverk fielded questions about how to diagnose and treat Alzheimer’s as well as promising directions of research.

At Stanford, Greicius said a person with memory impairment would meet with a neurologist, take a several hour neuropsychological exam, have bloods tests and a brain scan, and meet with social workers and nurses. He emphasized that this is far above the level of care available in more community medical centers. Sometimes physicians are able to find biomarkers that signal Alzheimer’s presence more than a decade before symptoms appear he said.

Greicius urged attendees to find out if they’re eligible for a neurological research trial at Stanford and to consider donating their brains and the brains of their loved ones to use for research. He also thanked Speier for focusing attention on Alzheimer’s.

“We’ve got to get the attention of policymakers to address this issue,” Speier said, adding that she might try to secure federal funds as part of the defense budget.

Gay, who recently traveled to Washington, D.C. to advocate for the disease, agreed. “We know that today we need a game changer – we need people to step forward and speak out about this disease,” she said.

Previously: Science Friday explores women’s heightened risk for Alzheimer’s, The state of Alzheimer’s research: A conversation with Stanford neurologist Michael Greicius and The toll of Alzheimer’s on caretakers 
Photo by Marjan Lazarevski

Global Health, Pediatrics, Sexual Health, Women's Health

Rape prevention program in Kenya attracting media attention, funding

Rape prevention program in Kenya attracting media attention, funding

stop rape signI’ve written previously about No Means No Worldwide, a non-profit that has partnered with several Stanford researchers to document the success of their self-defense programs for preventing rapes of girls in Nairobi, Kenya. Over the last week, the program has garnered some wonderful news coverage of its complementary program to educate boys about their responsibility for stopping rape, including a Reuters story that describes how some schoolboys halted the sexual assault of a young girl:

Having been trained to defend girls against sexual assault, the boy called other young men to help him confront the man and rescue the child.

“It would have been fatal,” said Collins Omondi, who taught the boy as part of a program to stamp out violence against women and girls in Nairobi slums. “If this man would have assaulted this kid, he would have thrown her inside the river.”

The Reuters story also mentions some very heartening news: Thanks to funding from the British government, all of Nairobi’s 130,000 secondary school students will undergo the six-week No Means No Worldwide programs for girls and boys by the end of 2017.

Upworthy has also covered the programs’ success. From their story:

In many parts of the world, assault prevention starts and ends with what women can do to avoid putting themselves in “high-risk” situations. These are not effective.

Researchers used Kenya’s scenario to test the two methods. One group of women received the No Means No [empowerment and self-defense] training while the other took a life-skills class. Girls who received the No Means No training saw a nearly 40% decrease in rapes in the year following the program. Girls who took the life-skills offering were raped at the same rate.

Not only is teaching women how to avoid “high-risk” situations ineffective, but it shifts the blame to the victim for being raped instead of putting it on the rapist for actually committing the crime.

Committing a crime is a choice, and the No Means No program empowers young boys to choose not to commit that crime.

Previously: Empowerment training prevents rape of Kenyan girls and Self-defense training reduces rapes in Kenya
Photo by Steve McClaughin

Patient Care, Pregnancy, Stanford News, Women's Health

New obstetric hemorrhage tool kit released today

New obstetric hemorrhage tool kit released today

pregnantbelly-3A few years ago, when my niece was born, my sister had a severe postpartum hemorrhage. I remember getting off the phone with my mom, who had just delivered the simultaneous news of the baby’s birth and my sister’s serious condition, and feeling terrified. My sister was being taken into surgery to try to stop the bleeding. What if she died? In the U.S., deaths from postpartum hemorrhage are rare, but they do happen.

The first thing that gave me a sense of reassurance, strangely, was a search of the medical database PubMed. After I got off the phone, I sat at my laptop looking at a multicolored flow chart that summarized how to stop an obstetric hemorrhage. All of the steps taken by my sister’s medical team were listed. Although she was hundreds of miles away, I felt comforted by the knowledge that her doctors were following well-established, evidence-based guidelines for what to do.

It wasn’t until a few minutes later that I realized the flow chart was developed by doctors I know. It was part of the Obstetric Hemorrhage Toolkit, a set of guidelines published by the California Maternal Quality Care Collaborative (CMQCC). I had first heard of the toolkit from a Stanford obstetric anesthesiologist who helped put it together, but had never imagined it might save someone in my family.

The toolkit was developed because maternal hemorrhages are rare, risky, and extremely time-sensitive. The kit gives medical teams the information they need to rehearse for, recognize and treat these hemorrhages immediately, without wasting minutes that could save the patient’s life.

Today, the CMQCC is releasing a new version of the toolkit. The update strengthens several areas of the kit, providing clearer parameters for use of certain medications and blood products and more information about how to support patients and families after a maternal hemorrhage, for instance.

And the flow chart I found calming is still there, on page 21 of this .pdf file. I’m so happy to see it again because, for me, it symbolizes the doctors, patients and families who will benefit from the kit in the future.

As for my family’s story, my mom called back later on the evening of my niece’s birth to tell me that the bleeding had stopped and my sister was recovering. Her introduction to motherhood was rougher than most, but today my sister and her daughter are fine: My favorite moment of a recent family gathering was seeing my chubby-cheeked niece racing toward me yelling “Aunnnnntie Errrrin!” with my beloved sister in hot pursuit behind her.

Previously: In poorest countries, increase in midwives could save mothers and their babies, Cardiac arrest in pregnancy: New consensus statement addresses CPR for expectant moms and Program focuses on treatment of placental disorders
Photo by bies

Cancer, Genetics, In the News, Women's Health

Angelina Jolie Pitt’s New York Times essay praised by Stanford cancer expert

Angelina Jolie Pitt's New York Times essay praised by Stanford cancer expert

4294641229_c78b406658_zYou’ve likely heard today about Angelina Jolie Pitt’s New York Times essay regarding her decision to have her ovaries and fallopian tubes removed. Women who carry mutations in the BRCA1 or BRCA2 genes have a significantly increased risk for breast and ovarian cancer; Jolie carries such a mutation, and in 2013 she shared publicly her decision to have her breasts removed to reduce her risk of cancer.

Jolie Pitt shares her decision-making process and notes that though she won’t be able to have any more children and though she still remains prone to cancer, she feels “at ease with whatever will come.” She closes her latest essay by writing, “It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you.”

After reading the piece I reached out to Stanford cancer geneticist Allison Kurian, MD, who told me:

Angelina Jolie made a very courageous decision to share her experience publicly.  The surgery she chose is strongly recommended for all women with BRCA1/2 mutations by age 40, since it’s the only way to prevent an ovarian cancer in these high-risk women, and early detection doesn’t work. This is a life-saving intervention for high-risk women.

Kurian is associate director of the Stanford Program in Clinical Cancer Genetics and a member of the Stanford Cancer Institute. In 2012 she published on online tool to help women with BRCA mutations understand their treatment options.

Previously: Helping inform tough cancer-related decisions, NIH Director highlights Stanford research on breast cancer surgery choices and Breast cancer patients are getting more bilateral mastectomies – but not any survival benefit
Photo by Marco Musso

Imaging, In the News, NIH, Pregnancy, Research, Women's Health

NIH puts focus on the placenta, the “fascinating” and “least understood” organ

NIH puts focus on the placenta, the "fascinating" and "least understood" organ

ultrasoundLast week, the NIH announced its support for an initiative to study how new technologies can shed light on the placenta’s function and health during pregnancy. Considering how crucial the placenta is to not only the health of a woman and her fetus during pregnancy, but also to the lifelong health of both, it’s surprising to hear the NIH call it “the least understood human organ.”

Currently, doctors and scientists can only gather information about the placenta by using ultrasounds and blood tests, and by examining it after delivery. What if new sensors could track how well blood, oxygen, and nutrients are flowing to the fetus, or if new imaging technologies could assess how well the placenta is attaching to the uterine wall? What if biotechnology could assess the effects of environmental factors on the placenta, such as air pollution, maternal diet, and medications?

Better understanding and monitoring of this temporary organ promises to improve maternal and child health. Placental issues can contribute to negative pregnancy outcomes such as preeclampsia, gestational diabetes, preterm birth, and stillbirth, and they’ve also been linked to a higher risk of heart disease later in life, for both mother and child.

This is the third and largest funding announcement for the NIH’s Human Placenta Project, led by the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development and cosponsored by the NIH’s National Institute of Biomedical Imaging and Bioengineering.

Calling the placenta a “fascinating organ” and the “lifeline that gives us our start in the world” Alan E. Guttmacher, MD, director of the NICHHD, also said in an NIH press release:

We hope this funding opportunity will attract a broad range of researchers and clinicians to help — placental biologists, obstetricians, and experts in imaging, bioengineering, and other arenas… For researchers who want to apply their skills in an area of medicine that isn’t being looked at as much as both scientific opportunity and human health warrant, this is a wonderful chance.

Previously: Placenta, the video game, The placenta sacrifices itself to keep baby healthy in case of starvation and Program focuses on the treatment of placental disorders
Related: Too deeply attached and A most mysterious organ
Photo by thinkpanama

Mental Health, Parenting, Pregnancy, Women's Health

A telephone lifeline for moms with postpartum depression

A telephone lifeline for moms with postpartum depression

Van_Gogh_-_Madame_Augustine_Roulin_mit_BabyI’m currently pregnant and due in less than two weeks. It’s my second child, so I’m not as worried about caring for a newborn as I was the first time around. But one nagging worry I have is the risk of postpartum depression, sometimes called postnatal depression. I have a family history of depression and that puts me at higher risk. Luckily, it wasn’t a problem with my firstborn, but it can crop up in later pregnancies – and scientists don’t entirely understand the reasons for it.

Postpartum depression usually hits four to six weeks after delivery—though it can show up months later. It’s characterized by feeling overwhelmed, trapped, guilty or inadequate, along with crying, irritability, problems concentrating, loss of appetite or libido, or sleep problems. An estimated 9 to 16 percent of new mothers are affected by postpartum depression. Even men are known to suffer from it sometimes. PPD affects not just the mother (or father), but can have lasting effects on the child as well, so helping these parents through a difficult and isolating time is critical

Now, a study published in Journal of Advanced Nursing shows that providing a social network for new moms, via phone calls from other mothers who had recovered from PPD, could alleviate symptoms for moms in the study for up to two years after delivery. A news release summarized the findings:

For the present quasi-experimental study, researchers recruited 64 mothers with depression up to two years after delivery who were living in New Brunswick. Peer volunteers who recovered from postnatal depression were trained as peer support and provided an average of nine support calls. The average age of mothers was 26 years, with 77% reporting depressive symptoms prior to pregnancy and 57% having pregnancy complications. There were 16 women (35%) who were taking medication for depression since the birth.

I find the idea that this insidious problem could be tackled with a phone version of the ubiquitous and valuable moms’ groups an uplifting one. Compared to drug treatments, regular phone calls from a peer who’s gone through something similar is a relatively cheap treatment. Further studies are needed, but I’ll be watching to see whether this approach takes hold as a standard intervention for PPD.

Previously: “2020 Mom Project” promotes awareness of perinatal mood disorders,  Is postpartum depression more of an urban problem?, Helping moms emerge from the darkness of postpartum depression, Breastfeeding difficulties may lead to depression in new moms, and Dads get postpartum depression, too
Image by Van Gogh

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