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Proceedings of the Second International Conference on Adolescent Health and Welfare ‘Youth - Conserving Our Resource for the Future’ October 1998 at The Royal College of Physicians, London. This conference was the second international conference held by Youth Support and drew colleagues from all over the world. Youth Support is a charity dedicated to the furtherance of health and welfare for youth and children and their families throughout the world and to that end we have promoted Adolescent Health and the training of professionals in the field for the last thirteen years. Our annual forum meetings and conferences have provided a focus for professional interchange and growth and it is with pride that we announce that following this last conference a consensus was reached that the Youth Support Forum should become the British Society for Adolescent Health and Welfare. We encourage colleagues to join this group which already has a core of distinguished and knowledgeable founder and honorary members. We are very grateful to the number of speakers who attend our conferences and participate in our activities at their own expense and would remind colleagues that as a charity, we do not earn from conferences - in fact they have been highly subsidised and have run at a financial loss - without the generous contribution of time and energy from experts throughout the world we would not be able to continue and we are extremely grateful to all of them - and to all of you who have purchased these proceedings, thus contributing to the overall effort - Thank you. The conference was a vibrant interchange of information and it is in keeping with this spirit that we have kept editorial change to the transcript to a minimum and allowed the presentations to flow in an easy colloquial manner. In this way we hope to engender a feeling of ‘being there’ and reliving the conference to those reading at home or in the office. I hope that you will all enjoy reading the proceedings and that we will see you all at our next meeting.
Opening Diana Birch. - Youth Support Welcome all of you to the second International meeting that we have had here at the Royal College. I know a lot of you were here at our tenth anniversary meeting two years ago and it’s really great to see a lot of faces back again especially the people who have come from far afield. I am not going to speak very long at the opening because I’d like to pass over to Gail fairly quickly so she’ll have a little extra time and then we can also take some questions, but I wanted to tell you just a little bit about Youth Support and what we are doing and tell you a little bit about the conference and some of the changes in the programme as well. It’s really exciting at the beginning of a meeting. It’s the first time we’ve tried a two-day conference and made it truly international - we have people here from America, from the West Coast, from the East Coast, from Canada, from Japan, from Chile, South America, all over. And it’s really, really great to think, that back in ’86 Youth Support started as a tiny little committee of people who broke away from the Health Service because we thought that the statutory services particularly the Health Service didn’t really cater for the needs of young people - we just had paediatricians and adult specialists and we didn’t have anybody in adolescent medicine. Everyone thought that I was completely mad because I just wanted to see young people and awkward people, pregnant school girls and I was doing this stupid thing of running Youth Support but it’s just wonderful to see how it’s grown and see all your faces here. We’ve had marvellous support from our American colleagues, particularly. I am really pleased to see a lot of SAM (Society for Adolescent Medicine) members here. Youth Support was born just before I went to one of the meetings which was held in Australia and I am very pleased to see some of our Australian colleagues here who’ve come so far. Youth Support has developed a lot over the years. As I said we started up as a small committee, gradually we managed to do a lot of work on teen pregnancy, on an outreach basis in schools and so on as we didn’t have a centre, and we started doing a lot of work especially in Jamaica, and you’ll hear a lot about Jamaica later on in the conference. And the work that I did with the teen mothers came to a beautiful climax in ’96 when I did the fifteen year follow up of my patients with a fantastic reunion of al the young parents. We opened the Youth Support House at the end of 1989 which was very exciting so then we had a residential unit and we could do counselling and a whole load of different things which again you’ll hear more about later. We then diversified into something that again people thought I was mad, which was a pet shop called Warm Fuzzies, because I felt that in order to attract young people in to talk to you, it is no good sitting in an office or a clinic or something like that and a lot of the abused kids we work with like to be with animals. So we have a mini-farm in our centre, and in the pet shop it’s a strange pet shop, somebody said to me once, one of the kinds, “Hey, you can come here and you don’t have to buy anything!” And they come in and they stay all day, and it’s a refuge. I remember a funny story, I was in one of the American meetings a couple of years back and there were some doctors there discussing how to get young people to come into their surgeries and one of them said, “Whey, I’ve a brilliant idea”, he’d have all of them come in for their hepatitis shots and I thought, my kids would run a mile, you know, so we prefer rabbits and goats and things like that to bring them in. The Jamaican connection I mentioned, upstairs in the library we have an exhibition of carvings, you’ll think Why? I mean at the last meeting we had these squiggle pictures that Donald Winnicott did with his patients and then you could see the connection immediately, psychotherapy with kids and all the rest of it. But the reason we have Lancelot’s carvings are that I met Lancelot in ’86 when I was in Jamaica and I’ve kept contact with him ever since. And he started up a project for teaching young people in a very deprived area of Jamaica, a trade, which was carving, he is a master carver. He did so well in fact that he’s done a carving for the Queen and he came over to England this year because he was invited to come and have tea with Queen. So he’s had tea with the Queen and he’s come to Youth Support, so that’s good. I will show you a picture of some of the carvings that in fact I bought in ’86 and you’ll see them in the library. Also Lance had a donation from the Prince’s Trust, to build, a building is really perhaps too elegant a term, let’s say, rather a large sort of a shed-type thing that Prince Philip gave him some money for where he could do work with young people and he’s visiting doing some work in Bradford now as well and we’re hoping that we will continue the connection and may be have a workshop in Penge (Youth Support Projects) doing some things of that nature. To show you some of the other things we do in Jamaica which we were helping deprived kinds in hospitals and so on and that’s one of the abandoned kids that we worked with then. And also the continuing connection is actually being with the women’s centres of Jamaica you’ll see some displays about that and Pamela McNeil who runs the women’s centres of Jamaica is going to do some of our presentations. The other connection we’ve had is with Russia through the years and one thing I am terribly proud of is that we have Andrei Smirnov here in the audience, could you just stand up, Andrei. I just wanted to introduce him, could you give him a round of applause. Thank you. So I called Andrei my Russia bear, because what impresses me about Andrei, we’ve known each other for a number of years, he works in Sverdlovsk, which is now Yekaterinburg, which is on the Europe-Asia border on the edge of Siberia, and works with very deprived kids and we’ve done some stuff together on Russian runaways which are, I mean if you look at the deprivation of runaways and street kids in London or Los Angeles or anywhere like that you have not seen anything until you’ve seen the way they are in Russia. Some of you might remember we made a focus of this a few years ago in one of our meetings and I showed a video, but you know they are really pathetic kids and you’ll hear more about that from Andrei, but also what impresses me about Andrei and his colleagues is that they do sterling work on an absolute pittance and you know I am very proud that we’ve been able to help them to come over again, so very welcome. And these are some of the kids in Moscow that we worked with as well, see holding up Youth Support T-shirts and we’ve had lots of trips back and forth. So now this is some of the latest bits we’re doing that you’ll see more literature about, we‘ve been doing some work to do with the Italian earthquake, a lot of people do not realise, because there was not a lot of publicity, but there was a series of earthquakes in my town in Italy last September, September 1997 and the people are still living in containers and tents and stuff and some of the towns were very badly damaged. All anybody over here hears about are churches, and especially the church in Assisi, you know, what a shame, but what about places where people live. And so we’ve been giving money to some of the poorer families which were very lucky a number of people donated, and also in 2000 we are hoping to have a conference out there looking at traumatic stress in young people and children and also related to things like earthquakes. You’ll see some information about that conference and it would be lovely if some of you could come, also there’s a book ‘Putting Down Strays’ which is about the Italians in the War, which we are selling in aid of the Earthquake Fund. So I draw your attention to that. Although I’ve Known Gail Slap for a long time and greatly admire her, she is a very difficult person to introduce because her CV is just so long, we could be here all day and she’s just so impressive, she has been an ex-President of SAM, the Society of Adolescent Medicine, she served as, it seems to me, I might have this wrong not being American, but she seems to me to have been Professor in Goodness knows how many towns and Universities, and one of the reasons also why she is here is because she also has international renown and she’s really tried I think to put international adolescent medicine on the map and I am very grateful to her for that. Gail at the moment is actually Professor of paediatrics and internal medicine and Director of the Division of Adolescent Medicine and Associate Chair in the Department of Paediatrics in the Children’s Hospital in Cincinnati. Previous to that she held a similar post in Philadelphia. I don’t think I’ll really say anything more about Gail but all superlatives you know, you could apply as she started off with her first degree with magna cum laude, and even if you don’t speak Latin it sounds very impressive, doesn’t it. So I’d like to pass over to Gail and we hope to have a little bit of time for some questions at the end of her talk.
Adolescent Reproductive Health - Lessons Learned and New Directions Gail Slap Thank you Diana. It is truly thrilling to be here, there are so many familiar faces and friends and so many other people that I really look forward to meet. I think one of the most thrilling things for me is actually walking in this building. The Royal College of Physicians has always had this mystique, this is the seat of medicine and over the years that I’ve gone to various meetings at the American College of Physicians which is the professional organisation that represents internees in the United States I’ve always looked at this huge gorgeous mallet that the Royal College of Physicians presented to the American College of Physicians and I thought, the ACP, the American College, uses a kind of an ever-green tree as its symbol, I think there is a subtle statement there, a big difference between the sort of symbolic appearance between the Royal College compared to the American College, they both do wonderful work, but this really has a kind of history and special feeling around the world, so I feel honoured that we are meeting here today. I must say the other thing I’ve learned about London this time is I thought Bangkok and Mexico City were the places with bad traffic now I understand why your meetings don’t start until 9.30 10 o’clock in the morning. I wasn’t prepared. OK What I want to do today is talk about adolescent reproductive health and I’d like to do it in a variety of ways. We’ll talk some about clinical service, but really what I’d like to do is consider with you where we’ve gone in terms of our research efforts in adolescent reproductive health and where I think we need to be heading as we move into the next century. Well, first I think it’s fair to a ask a question why adolescent. Firstly, and I think you all know this, 20% of the world population is 10 to 19 years old, there are 1.5 billion teenagers between the ages of 10 and 24, 50% of the world’s population is under 25 and this is climbing, 86% of youth now live in developing countries and further more if we look at youth around the world living in urban environments, a youth is three times as likely to live in a city in a developing country as in a city in a developed country. These youths face the highest risk, they face the least support. And even more than that group is the 70% of the world’s urban migrants who are youths. So why adolescent reproductive health. Well, whether you’re married or you are unmarried, people are most likely to begin their sexual experiences during the adolescent years. 50% of African women and 30% of Latin America women are married in adolescence, and yet if we look at what’s happening to the average age of marriage around the world it’s actually increasing. So the time between puberty onset and growth considering even somewhat later the beginning of menstruation, menarche, and the time of marriage we are seeing an increased length of time. What that means is that we’re likely to see increased sexual behaviour during unmarried years. Now in North America we know that over 75% of teenagers are sexually active. If we look at births we know that about 20% in the United States and over half of African first births are to adolescent mothers and around the world the number is 10%. Whether you think that’s right or wrong and I think I’ve heard people argue both ways one thing’s for sure, and that is morbidity and mortality faced by mothers and by their infants is greater during the adolescent years. Maternal mortality for adolescents is twice that of adults, the risk of low birth weight is about 1 and a half fold, the risk of death during the first year of life infancy is about twofold, the risk of neuro developmental delay is about threefold. And finally 1 in twenty teenagers around the world is affected by a sexually transmitted disease. But adolescent reproductive health means more than the risks, it means more than the pregnancies, it means more than the sexually transmitted disease. It also means looking at individuals - take some examples - three girls, all aged 12, best friends, birthdays within one month of each other, and helping them cope with the differences in their pubertal development, but also trying to understand what controls these difference in development. If you consider the first 12-year old, she is 10-0-4, she is 50th percentile for height and weight, note that she is not smiling. Why is she not smiling? She is wearing braces. Look at this teenager on the left. She is also 12 years old. What was the first thing she did when I asked to take her picture. She kicked off her shoes. Why did she kick off her shoes? She is worried about being too tall . She is barely 10-0-2. And this 12 year old, 10-0-2 notice what she is doing, when I asked to take the picture. She is standing on her toes because she is fearful of being too short. So they all have their own difficulties and differences to deal with and yet they are all entirely normal. Now let’s look at this 14 year old. This too is adolescent reproductive health. She has delayed puberty, markedly delayed puberty. She is in the hospital constantly for her sickle-cell disease. And let’s look at this 16 year old father who’s hospitalised after a gun-shot wound out on the street. This young man has 2 children. We cope not just with the violence of the inner city, not just with the medical complications of his gun-shot wound, but we cope with the difficulties that this young family faces. Now what we do know about risk behaviours is that they increase dramatically during adolescence and yet I think there is a tendency to say all risks at all times. Data from the United States shows that the risks at age 11 to 12 are going to be different than the risks at age 18 to 19. Certainly in the prevalence if nothing else. What’s going to increase most dramatically, as you would expect is sexual activity - alcohol is the earliest behaviour likely to start, it quickly increases and consider what’s likely to happen is the sexual activity is increasing, the same time this experience with alcohol and other drugs is increasing. The chance that the sexual activity is going to happen in a risk way is very very high. Well the World Health Organisation responded to many of these issues in early 1990s with a call for action and we’ve seen several publications over the 90s from WHO and also from UNICEF, most recently the 1997 report which I am sure many of you have seen. What in the earliest work that went on in the 90s what the WHO asked that we do is to document the health status of adolescents, looking at morbidity, mortality and the prevalence of problem behaviour around the world. But the WHO asked us to do something else and that was to identify the positive indicators for adolescent health what I would consider the good adolescents, as well as the bad adolescents. I think we’ve done a good job and are working hard on this. I don’t think we’ve done as much here. Yes, we’ve identified the negative indicators, we’re getting much better in identifying which adolescents are at risk. But we don’t really understand is what makes a teenager resilient. They ask that we explore the perceptions of teenagers regarding their health needs and problems and again I do think we’ve made headway here. Now our job is to truly explore the perceptions of teenagers rather than giving teenagers instruments that are developed by adults that force them to respond to what our preconceived notions of their perceptions are. And finally we were asked to evaluate the effect of interventions and programmes and again I think we are moving steadily in this direction. When I thought about what are the critical research issues in adolescent reproductive health this is what me list would look like: · what is the access around the world to reproductive health care; · how do we modify risk behaviours for HIV and other sexually transmitted diseases; · how should we screen for STDs and how shall we treat for STDs; not just in terms of what is the best treatment, but also what is the most realistic treatment, given the environment. · Contraceptive counselling and compliance; · pre-natal care, content, quality and utilisation; · gender roles and responsibilities, which I don’t think we’ve done enough with; and · physical and sexual abuse, and I’d like to point out here I am talking not just about girls but also about boys. Now, I won’t have time to go through all of these, but what I’d like to do is walk with you through at least two of them. Let’s take a look at what’s happening to access, how teenagers present and who they present to at least in the United States to start. And then let’s take a look at what’s going on with STD screening. And finally what I’d like to do is go through a type of case example for HIV treatment. First utilisation. Data from the United States comes from a very large data centre, it’s called the National Hospital Ambulatory Medical Care Survey. Now at the time that we did this analysis I think this was the best data centre we had to look at utilisation patterns in any age group. I think now in the United States we have something new that I think is going to really improve our ability to look at utilisation. It’s called the Medical Expenditure and Provider Survey, but for now let me share with you what this survey showed. The three components of this survey: one is on emergency department utilisation, one is on physician offices and one is on in-patient hospital stays. The data I am going to be showing you is on the physician offices. What we did in this study was took the adolescent years and rather than looking on block, sort of 11 to 21 year old approach, we decided to ask the question, does utilisation across adolescence change, and does that utilisation change in a way that makes our current guidelines, the gaps, break future guidelines for adolescent preventive services makes sense, or either some dis-synchronies here. What we found is when we looked at visits compared to census population proportion what you can see that across adolescence there is under-representation in visits compared to the percent of population. Now I am hesitant to say there is under-utilisation because for example it would make logical sense that the geriatric population would use more services than the adolescent population. The trouble I have with that, is when we look at emergency services what we see that adolescents are over-utilising emergency services. And they are over-utilising because of crises be they injury, STDs, pregnancy. Now let’s look closer what happens to visit numbers by age and sex. What you see is that during childhood and into the early adolescence years girls and boys are seeking physician offices about equally. We begin to see some change in the mid-adolescent years and look at what happens by late adolescence 18 to 21, girls are over twice as likely to seek care in offices as are boys. Now let’s keep going. Well you might say how does all this relate to non-insurance. And I think we begin to see something very telling. When we look at the non-insurance rate, What you see is that males are far more likely by late adolescence 18 to 21 to be uninsured as females, well why is this, And here we begin to get some indicator of what’s going on . Look at what happens to public insurance at age 18 to 21 for girls, look at what happens with boys, remains absolutely stable . So what’s going on here? Why are the girls suddenly receiving so much public health insurance while the boys are remaining quite low and flat. And the answer is adolescent reproductive health problems as you might expect. Looking at the percent visits to various specialist by age. What you can see at age 11 to 14 is that about 40% of the office care is to paediatricians and that about 25% is to family practitioners. A very small number are to obstetricians /gynaecologists. Now let’s look at what happens at 18 to 21. Adolescents are as likely to see an obstetrician /gynaecologist as they are to see a family practitioner. And this is not 25% of female visits, this is 25% of all visits. What’s happening is that males by and large in the late adolescent years simply are not seeking care at the rate that females are and females are seeking care primarily for reproductive health issues. Now let’s take a look at what the leading diagnoses are. By 18 to 21 nearly a third are coming in for prenatal reasons. At 11 to 14 adolescents come in for routine care, pre-school, pre-camp kinds of check-ups. How many 18 to 21 year olds do you think are coming in for, check my ears and listen to my heart, no. What they are coming in for is pre-natal care. Let’s move on now to talk about sexually transmitted diseases. In 1997 the Institute of Medicine in the United States issued an important report than was called “The Hidden Epidemic”. And what the Institute said in this report was that public awareness about sexually transmitted diseases was dangerously low. And the theory was that it’s low for three reasons: one is obvious, and this is the stigma regarding sexually transmitted diseases which inhibits both discussion and education. A second reason though is many infections are asymptomatic and undetected. And the third reason is that the sequelae of the infections are often delayed. If you can consider for example cervical cancer and human papiloma virus or of you consider infertility following pelvic inflammatory disease. Secondly the impact on women is not widely recognised. A large survey which was done about five years ago in women ages 11 to 60 showed marked underestimation of the effect of STDs on female anatomy. Thirdly pathogens are still being identified. Consider since 1980 we have identified 8 new pathogens for sexually transmitted diseases. Next, clinical spectrums are still being described. Consider here, the newly reported relationship between bacterial vaginosis and pre-term delivery. Consider the many new clinical manifestations of AIDs that previously were unrecognised.
And finally
prevention in the United States is unfocused and it’s controversial. And that’s
despite good evidence that various interventions work. Let’s take a look at the
school-based interventions. Education about sexually transmitted diseases is
under-funded, it’s restrictive, it’s inconsistent and it’s delayed. This was a
report from the Centres for Disease Control in 1996. Programmes that teach
contraception have not been shown to hasten sexual initiation, there have been
many reports on this, one of the best summaries came again from the Institute of
Medicine in 1995 and yet despite this we continue to see teaching programmes in
schools that are really not talking about contraception what they are talking
about is abstinence. It’s not that its’ wrong to talk about abstinence but we
must do more than just talk about abstinence. School condom availability
programmes have been showing to decrease sexually transmitted diseases. But are
few and still relatively new, in the
United States
it’s estimated that only 2 per cent of schools distribute condoms. And finally
students in schools with condom availability do not have intercourse earlier or
more often and again this is not new work, this is going back 4 years, and yet
we really have not seen a change. When we think about STD surveillance strategy most surveillance strategies, no matter what country you look at, use passive reporting rather than active case finding. What that means, is that no matter how bad the numbers sound they probably still an under-estimation. Secondly the surveillance data are difficult to interpret when we consider that 8 new pathogens have appeared in the last 18 years, that we have new syndromes, and we have new tests, such as LCR. Periodic behavioural health surveys are very important, they’ve been underdeveloped and they’ve under utilised and they’ve often been blocked in many countries, including at times in the United States. Provider performance measures. And I think this is very important. Increasingly certainly in the United States we have seen measures of the doctors doing what they should be doing, what are called performance strategies or screening strategies typically these have not included STD screening, they’ve included things like our mammogrammes being done at the appropriate rate in some cases our PAP smears being done at the appropriate rate. Several of larger managed care organisations are now beginning to include chlamydia screening as a performance measure and I think it is a very important step in improving care. Well, if we think about what the current focus for adolescent risk research has been certainly over the 80s and much of the 90s we’ve tended to look at selected problem behaviours, at youths in difficult circumstances, we’ve looked at the deficits, the problems, the risks of individual adolescents and we’ve looked at family and peer characteristics. What are the limitations to this kind of approach? I think the biggest problem is rights of the youth, it imposes a deficit model. What that means it will not help us identify the predictors of success. Why is it that in adolescent who’s impoverished, who’s on the streets, who has minimal support may still do well. And there are adolescents who despite very adverse circumstances do do well. I think the second thing it does it de-emphasises the study of neighbourhood influence in youth development, yes, we’ve looked at the individual, yes, we’ve looked at the family and the immediate peers. But we really have not used the kind of sophisticated and often qualitative research methodologies that are needed to look at neighbourhood. And I am not talking here just about the neighbourhood where the adolescent lives, think about the adolescent’s day: they may wake up in one neighbourhood, go to school in another neighbourhood, play basketball in a third neighbourhood, go to movies in a fourth neighbourhood, they are very very mobile, and all of those neighbourhoods can have influence and impact on the adolescent’s development. And finally I think this approach encourages fragmented services that really are aimed at the crisis, at treating rather than preventing the sequelae of problem behaviours. Now what I’d like to do is take you through a case example of why I think this approach is a problem. Consider here two 18 year old men, both have HIV. Both are good candidates for triple chemo therapy. Both live in urban slums. Both are uneducated, unemployed and poor. Both rely on local hospital clinics for their health care. Both have families that want them to take medicine yet neither has done so. Why? Two situations sound very similar. One man lives in Punei?, India. The annual cost of the three drugs is US $10,000 which equals the combined annual salaries of 30 workers. The drugs are neither available nor they are affordable. The medical doctor has little to offer and the man decides to see a local healer. Now consider the second man. He lives in Philadelphia, United States. The annual cost of the three drugs is the same and fully paid by the Government. The medical doctor has the medication and urges the man to take them. The man refuses and decides to see a local healer. The diseases the same, the outcome is the same, the individual characteristics seems the same, the reasons behind the outcome are different. But are the reasons really different? I would challenge they may not be so different as they initially appear. How does the neighbourhood influence in Punei? Really compare to that in Philadelphia? Do these two men perhaps share sentiments of uncertainty or distrust or disbelief in health care system that are more similar than they are different? Are the reasons for not using the medication therefore are more similar than they really are different? So within example like that what I would suggest is it’s time to shift our prospective, it’s time to explore the effect of environment, the economic opportunity and the subsocial network on youth behaviour, it’s time to move beyond easily measured demographic and economic factors to the more complex study of social interactions, both the density of the interaction and the quality of the interaction. What this means is that we need new methodologies, we need to be working with social science and scientists, we need to combine quantitative and qualitative methods. And finally it’s long overtime to translate our research into services that promote positive outcomes for all youths rather than services that try to curtail negative outcomes for some youths. The new direction then in reproductive behavioural health research that I would see are to define what are the societal realities and expectations regarding reproductive behaviour and health care, to identify the neighbourhood norms and expectations for sexual behaviour, to begin to remove neighbourhood barriers to help the behaviour and to try to define programme effectiveness as more than improve knowledge, more than better behaviour
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