Plenary P2 Health and Physical Challenge

Chaired by Gerben Sinnema Utrecht Netherlands

and Simon Clarke Westmead Hospital New South Wales, Australia

Primary Care and the Adolescent  Ann McPherson

We have heard that in some countries young people may be denied access to services because of financial problems. In Britain, there are financial problems and there are people who feel excluded from services, but they do have access in a way that many other countries don’t have and that’s something that we need to work on. We know that 70% of young people like other people will go to see their GP within any one year and on average teenagers do consult 2 or 3 times a year, so we do see them and although coming for specific reasons, this could be seen as opportunities for all sorts for other things. We don’t use them as opportunities for giving them health information or health promotion or whatever else we might want to do it’s also important that when they do come their experience is positive and it can be used in a way that at least tells them what is available when they might need something else so that they don’t think, “I am not going back there because I’ve been put off.”

There was a study done in primary care asking what they would like to know about, these are the things that came out top. Now, contraception came out top, both boys and girls, but more for girls than for boys. How do I know what’s best for me, where do I go, at what age can I take the pill. These are the sorts of questions that I am sure in general practice we are not starting to address.

Period problem. Why is the period so painful, why aren’t they regular, what can I do about heavy bleeding. And I think when we actually talk to young people about these problems we don’t address them in the sorts of way or the sorts of questions which they are actually asking us.

Weight. How can I lose weight, what’s the ideal weight for my height. We know that 70% of young girls will be dieting at some time or other and I think 25% or 30% of boys will be wanting to put on weight. So whole area about weight and giving information.

Exercise. What’s the best form of exercise, how can I find out about a healthy diet. We’ve recently done a study, I look after a lot of students in Oxford asking them what they wanted information on and interestingly food and diet one of the things they wanted much more information about and of course they are older teenagers. One of the other things we asked them was whether they thought they ate a healthy diet and they said, yes, until they got to University. So we also need to make access when they actually leave home to more healthy diet, better.

Sex. Where can I go to get good information about sex, I don’t think they necessarily want it from GPs, they want information about contraception from GPs, not about sex. There is a lot of misinformation about STIs with the young people and where to get that information. I mean I think one of the things in many English schools in the UK is that it’s so patchy what sort of health, sex education they get and it does seem that it is time that we actually sorted that out and made sure that in any school there is actually good and effective sex education, it’s rather like not advertising cigarettes, it seems to me it should be one of those things that happens and we shouldn’t still be discussing it.

Confidentiality. There’s always comes up very high. Can I trust my doctor to keep what I tell him/her confidential, is there anything they will tell my mum about and we have to be honest about that and do you discuss patients with your colleagues and of course most of us do, so I mean that whole thing of what confidentiality means is important.

Sexuality transmitted diseases. How can I protect myself, these were the questions. Is vaginal discharge normal. I mean that last one is incredibly common and yet I think it’s very rarely addressed as to what’s normal and what is not. Just how heavy your period is, whether it is what’s normal or it is not. The teenage magazines do quite a lot of it but actually I think it’s an area that people and mothers  find very difficult to talk to their children about.

Acne. Is there a cure for it, does eating chocolates cause spots, do any of the cremes work. I was agony aunt in one of those teenage magazines for a bit and these were the sorts of questions that came up again and again and again.

Stress and depression. Why do I feel so stressed up, does anyone care about me, why does love hurt so much.

Cancer. There is quite a lot of anxiety about cancer, probably because it is so high profile but of course if one’s looking at deaths in young people after traffic accidents and suicide cancer is one of the things that does cause death, but I think they are worried about cancer in a different way. If I look at older teenagers, University students, they will be worried about breast cancer and cervical cancer when they are sitting there smoking cigarettes. And that whole view of what is risky and what is not, there is a lot of misinformation.

So the next thing we did was to  ask them what they liked about visiting the local health centre. These were things that the younger teeagers felt were important. Friendliness, and I think that meant that it was somehow a surprise that they got all this. And what was that they didn’t like. They didn’t like it being too morbid, sad and quiet, too quiet and stuffy, too short a time with a doctor. We know that actually that’s true, that they are seen for a slightly shorter time than adults and that maybe because they are coming more with minor illnesses, but it maybe because we don’t know how to talk to them. You see a teenager and you think, “Good, that’s a good way to catch up when you are running late in the surgery”, so I think there are all sorts of things to look at  there. And too long waiting to get in, of course a lot of these things that other people, other than young people will also complain about. The very quiet waiting rooms, in our own practice we tried to use all different sorts of music, but you can never please everyone and you will always get complaints whatever you are using. So I don’t know how we get over that one.

Other things that you think your local general practice should be doing. Confidentiality, they felt was something we should be talking about and I just give a little look of a poster that was actually sent out to all general practice: here to listen, not to tell. We talk about confidentiality, if you ask people what confidentiality means at that age they often don’t know what we really are talking about. So we need to explain it. And there is a very good little leaflet which was produced by the Brook which actually entitled “Private and Confidential” and when we did some research looking at which leaflets young people felt were the best this one came out top of the list partly because it was to do with the way it was presented, but mainly to do with the information it gave. And it actually gave them information that they didn’t have before about what confidentiality meant. These are available form the Brook Advisory.

These are the things that they wanted: more advice on contraception, not to be treated like children, doctors specifically for 10 to 20 year olds. I think if we looking in general practice there are quite a lot of problems how you provide clinics, in some areas it seems to work very well and in other areas clinics have been set up and they really have not worked at all.

Listening without a patronising attitude, asking about the male or female doctor, I mean the patronising attitude, doctors tend to do whether they are talking to young people or not young people. But I think young people find it much more difficult to deal with.

To know what’s available, and I think it’s another thing which I think we’ve been very bad at is actually telling them, for example, that they can change doctors when they want to. And they very often don’t want to see the doctor who they’ve been seeing all their lives with their parents. And I think we should be much less protective and worried about what other health professionals feel or our colleagues feel and actually I think it should be advertised that they can change doctors and go to their own doctor. However nice you are as their GP it may be that they just need someone whom they hadn’t known with their parents and say at 4 or 5. And good written information on contraception, exercise and diet.

So how do we make a practice more young people friendly? Find out what young people want and also find out what you are doing. If you start to look at what you are doing it’s amazing how you think you are doing one thing and you find you are doing another. When I am doing training for GP trainees I give them an audit questionnaire which is in this pack about promoting adolescent health in your own practice and it has in black do you have a leaflet about emergency contraception, do you have a leaflet about confidentiality, and I get them to go about their practices to see what they actually doing. And it’s amazing that just by doing that it makes them realise that they are doing very little of these things within the practice and one can start actually change what is going on. So there is nothing like looking at what you are doing to see that you are not doing to see that you are not doing what you think you are.

Making sure that team actually knows what confidentiality means, doing some training, see what the staff are actually doing, some of you may have heard me saying this before, but one of the things I do, it was ringing my own practice pretending to be a 15-year old asking for an urgent appointment and it’s amazing to see the sorts of things that you think are being done well and some of the times they are being done quite well but partly not as well as you want them to do. So worth at least doing a bit of discreet investigation or getting some 15-year olds or 13-year olds to ring up to see how they are dealt with. I think the Brook did that, they actually tested their own services and even within the Brook specially targeted at young people they found that there were some problems still. So training very important, have a meeting, start to talk about what you are doing for young people. Many receptionists are actually women who have had teenagers themselves, and are actually interested once you give them their heads to provide ideas as to how best to deal with young people when they actually come and register or come to see you or phone up.

Emergency contraception. Most practices still don’t have any information about emergency contraception and that you can get it whatever age you are.

Adolescents. One of the things when we asked them is they do want to be able to phone on a no name basis. NHS directives coming in that allow some teenagers to phone up to get information, but I think we need to make it easier at every level.

Notices and magazines. See what they are reading. How many of you have read one of these magazines? That leaves half of you who haven’t. If you are dealing with young people, this is where they get most of their information form. Now, you don’t need to be shocked by it but the Sugar is one of the less lurid ones, but certainly if you are dealing with young people you do need to read what they are on about. And some of it is incredibly explicit. But if this is where they are getting their information from, if we are miles behind than where they are getting most of their information from we are not talking their language.

And having good written information about practice facilities, we produce a little booklet like this with a rough guide about the illnesses, a little rough medical guide about how, to help them to deal with their own illnesses and the things that are local within that area. And that’s patchy, we have to as GPs actually provide information about the practice, but most of it would be the sort of information which is not relevant to young people.

Clinics. I’ll be interested in people’s experience of clinics who say are very variable, we’ve tried one specifically for young people and we found that it really hasn’t worked in our particular area and in some areas it’s been very successful.

Once again leaflet which are specifically targeting young people, the Family Planning Association does excellent ones but if you go around practices and I go quite a lot, if you look at what leaflets are available, very few of them are targeted at young people.

And then lastly helping parents I mean one of the things I think we’ve neglected to realise that it’s parents who are giving most information to young people. There was someone this morning who was saying we mustn’t blame parents when goes wrong, which we are tending to do, but in terms of health care if all our research shows that apart from magazines where do they get all their information from and help is from their parents and I think we need to be looking at ways in which we can give more information to parents to help them. And we see most of those parents, especially the mothers, most of them will be having regular cervical smears or problems with menopause, so we are seeing them and we can actually, it’s an opportunity.

This questionnaire was completed by Chris Donovan with 347 students 12 to 18 and 62% didn’t know how to register with a GP and I think that just shows that we need to be giving them much better information about how to use the health services. We somehow assume they know and yet I think there is  only way that teaches them. Once of the things we should be telling parents is encourage them to get their own young people to actually ring up and make their own appointments. And I think these figures show how with a little bit of better information one could actually change the access that young people have to primary care whatever other resources we are giving them and whatever other things we are setting up, at least let’s use the stuff that’s there already. And that is just something that was produced over 20 years ago within this country which we should be looking at within the services that we offer and it seems that we made some progress but there is an awful lot of way to go. OK. Thanks.

Question re. Emergency contraception.

Answer. There was a paper in BMJ which showed that the kids not only knew about emergency contraception and they knew when the accident had occurred they knew when they needed emergency contraception but they couldn’t get it.

Question  I tried to get my 15-year old daughter to go to GP on her own and she won’t because they do not allow her to reister with her own doctor. How young can a teenager get registered with the GP?

Answer. I don’t think there is any law. I think part of it is what GPs will accept and there is quite a lot to do with how we tell them, how encourage them that it is perfectly all right to take on young people from other practices. There is an enormous sort of problem about people feeling very protective about their patients. Now it seems to me most of us are overworked and there are far too many patients to go round so one shouldn’t feel that just because someone wants to register with someone else it maybe because we are not doing things right and we need to look at that  but certainly with young people we need to be encouraging them to take responsibility and not be possessive of them.

“Does School Health Have A Future?”  Leon Polnay.

I am Leon Polnay, I am professor of community paediatrics in Nottingham, for the last 20 years I’ve been a community  paediatrician working within a city area. I picked the titled “Does School Health Have the Future” because certainly in quite a number of districts in the UK school nurses and school doctors are threatened species and I just want to perhaps start with a few cartoons, illustrations perhaps why school health finds itself in such a vulnerable position.

The first one relates to how we rate and appreciate scientific aspects of medicine and practice and I think because school health is very much on the low side of things it does not get the publicity, it does not get the investment that it ought to. So I think that’s the first point.

Second point, we’ve got a lot of change in the NHS at the moment changing direction, we don’t know where we are going, why we are going and the direction seems to change. And in it people seem to think about what we are going to do with the big players, but some times because school health is quite a small service it gets missed out. And you know we end up on our nomadic journey. Another set of migrants here falling charismatically into the future. It’s symptomatic that we talk about NHS reforms when the implication is that there is something wrong, or evil, or bad about what we are doing now. There certainly is a need for school health to change but there is also a lot of people taking us in one particular direction and then having second thoughts about whether it’s the right thing to do. So, we’ve got problems in terms of policies and directions for the future.

Where we are going? This is a rather more optimistic picture of the main highway which we are on between birth and adult life and the aim is to deliver individuals up this end who are healthy, well-educated and competent and in order to do that there are some very important intersections on the main highway: there is this one with education and I think it’s important to remember that teachers and paediatricians are both people who spend all their time with children and should be working together. And another set of intersections which we could call social services with other important services for young people. One more point I should make we are very much in a position of lack of development and research to back up school health which is one of the reasons why it is vulnerable, I think we do need to develop a research component to that programme and I think it’s quite a revealing statistics when one looks at how research and development money that comes to individual districts is distributed. So in my district our community trust gets £ 67,000 to support research and development. Some community trusts get none. Our teaching hospital down the road has over 2 million. So we don’t really start as equal partners in this.

Well, where have we come from. School health itself started after this report was published, amazing document, the 1904 Committee report of Interdepartmental Committee on Physical Deterioration and I think there are still important lessons in this report for all of us. The report was commissioned because of the large number of recruits for fighting the Boar war who were unfit for service. And they wanted to know why that was the case. And what did they come up with. First of all was that health in adult life was linked to health in childhood, therefore we should promote the health for children and amongst the recommendations were recommendations related to juvenile smoking, alcohol, exercise, diet, open spaces, clean air, they recommended that growth was a very good way of monitoring the health of children and they also thought that regular medical inspection, I hate the word itself, was a good means of actually discovering at an early stage children who had remediable medical problems. So I think it was a very good start to school health.

Because I come from Nottingham I couldn’t resist putting up a picture of Robin Hood and I suppose he had a particularly effective form of advocacy in terms of redistributing some of the inequalities of health and wealth in the local community. Unfortunately I don’t think I can take this sort of apparatus when I am arguing this our health authority on how they distribute wealth and NHS resources but I’ve got a lot of sympathy with his particular approach.

In terms of community child health and school health I think we’ve got good news and bad news. Good news I think relates to skills and training over the 20 last years there are now training programmes for school doctors and for school nurses, we’ve developed national policies, eventually we’ve agreed about what they are, we’ve got a growing body of knowledge, growing influences and very important alliances with other bodies within and outside health that work with children and young people. But there is bad news. And at the top there are cuts. I first showed this slide at the meeting of European Union for school and university health and I think the title of my talk was  “Cuts and Freezes Spread Diseases”. Didn’t translate very well into Finnish unfortunately, but I think the issue is that is you suddenly cut a bed in a coronary care unit you see an immediate effect. If you cut little pieces off every year from your school health service that it isn’t that same dramatic effect and not too many people screaming.

Those are image problems of school health and I think I made myself popular with some colleagues and I am popular with others in terms of suggesting that people should sharpen up and smarten up their own image. There is still some lack of influence. We certainly have poor information systems to govern our arguments and I am certainly impressed that people in 1904 in many ways had better information than we have. So for example this week on Tuesday we had an evening meeting and I listened to one of our local obstetricians talking about teenage pregnancy. The most recent data that was available was 1996. Whereas the report for 1908 was published in March 1909 and they did that every single year and they had no computers. So timely information. We lack the infrastructure, I think, very often and our clinics perhaps are poor shop windows for the types of service we would like to offer. And I think very important I don’t think we are marketing the service in appropriate way to parents, to young people and health commissioners.

Other areas. I think what people call the new pathology, there is certainly lots of problems within school that require medical input. Bullying, I mean that actually has a mortality, you only have to look at your newspapers to see that. Coping with stress - incredibly a large problem. With targets for teachers, lead tables, pressures of examinations, stresses of will? Problem, where do they go? ADHD, substance misuse, self-harm, low self-esteem, surviving family breakdown, you know, these are common events, and where do the young people go to assess health for that. And to this I would add school exclusions, we need to be involved with those who are not in school but are of school age. And children and young people with Chronic Fatigue syndrome. So there is new agenda, you know it’s not flat feet, you know, and all the other things that people associate with school health.

I’ve got another set of cartoons which I call inappropriate school health. One of my favourite one of two little nits on the child’s head and one saying to the other, “Pretend to be dandruff, here comes school nurse.” But we’ve got some serious medical problems that we need to address.

A report by the National Association for the Education of Sick Children looked at the educational experience of a 100 children, young people with chronic illness, and I think it should be compulsory reading. It worries me that, you know, as a child in school forty to fifty years ago with asthma, these were my experiences, and I don’t think they’ve changed that much, keeping up with work when children are away from school, hours of coping other children’s work rather than the teacher taking you through it. Real education, actually realising that children are entitled to that. And sometimes out of sight - out of mind, if the child is at home or in hospital. But there is a very real need to provide good education for children with chronic disorders, and we might be talking about 6% of the total population.

Children with disabilities. We have more of these children, not less, so it does not provide an excuse for reducing school health services. Children with learning difficulties, specific learning difficulties, but I think the important point here is that these children are now in main stream schools, their teachers need support, their teachers need advice and they also need independent school as well, and those are often more disadvantaged particularly in getting health advise.

Health promotion. We had a whole series of ideas to promote health.  We had Health of a Nation, we had Our Healthier Nation we now have Health Improvement Plans, we now have Health Action Zones. I am not sure how effective they are. Certainly in the Trent Survey these don’t seem to decrease, they actually increased. And we actually not making an impact on many of the major health promotion issues and my feeling is not that we are doing things wrongly, but we are not doing enough of it, we are not reaching the critical level of activity to have an effect. You know, here is an example, where I think a lot of schools have been mobilised to look at the common problem of back pain. Huge problem in adult life in terms of working days and costs and we are actually seeing that over half of teenagers we were looking at have experienced back pain in the last month. And that was one in five, that was a big problem and we found that the children who had back pain tended to carry their bags on one shoulder rather than on their back, they carried heavier bags, they tended to be taller. And there are very simple things that could be done to relieve it, like carrying less weights, carrying them properly and having seats which are the right size for the young person. And schools are very interested in this  and young people seem to be very interested in this. And October the 5^th was the National back pain week and there was great interest in schools in bringing about change, so back pain is an example.

Children in need in schools, children who are looked after by the local authority, children who are caring for disabled parent or sibling, very often these young people are invisible, people do not realise what they actually doing . Children who are poor and very important children who just need a friend. And OK, that’s not a drug, but for a lot of children a school nurse is a friend they can go to talk to in confidence, she’s there, she is available and it is a very important life line for them. And I think people underestimate the importance of this. And very important to require long-term support and continuity in terms of people who work with them in school.

General paediatrics also impacts upon school and school health and all of these problems may have major implications for school, headache might interfere with work, skin rashes night interfere with relationships, cause enormous worries, great concern about growth, which we’ve heard about, asthma might interfere with games, confidence worries about going away on school trips. And again the background of all of this there is also concerns about teachers being responsible for medication. And one extreme view is we’re hear to educate and not medicate and other teachers are extremely keen to do everything they can to help the child with any paediatric problem but they require the support on a on-going basis.

There is a public health role and I’ve already mentioned that I think we had better information at the turn of the century. We ought to provide a picture not just of individual children but of each school and a profile of health problems within that school. We ought to be able to provide this population overview. Here in 1908 and it’s time to show you the data that they grouped the growth data of children so they were actually able to show that children in schools from poor areas were smaller and lighter and children off in schools from better-off areas. And this is an inequality in health and they wished to address that. One way of addressing that is school dinners and I am delighted that we’ve discovered nutritional standards for school dinners and the aim was by the time the next year’s report was published that that inequality was diminished. So information is needed for a whole variety of reasons.

Evidence-based medicine sometimes is difficult to supply for school health because the most interesting and relevant outcomes are distant in time, complex and it might be quite difficult to link them to the intervention. There are other people making claims for resources, elderly, acute and there is a horrible thing about saving money. What are the selling points? I think school health does reach for young people that other services don’t and it’s got access potentially to all young people, nearly all go to school. It’s cost-effective, it’s a locally sensitive service, that takes account of local population and its needs. It’s a specialist service, it’s got a long-term perspective, it’s got a good track record of working and teamwork with others and it will also overview the whole population. The threats to it are still ignorance about what school health does and its gradual erosion and aspects related to lack of money for training, recruitment it needs investment. I finish with a slide which I pinched after the conference in 1992 to mark 100 years of school nursing. It’s an excellent title, the message which I want people to take away and that is that the health of a nation begins at school and therefore we need good school health services. Thank you.

Chairman - Thank you very much. That was somewhat exhausting, I feel tired just listening but it really did emphasise the enormity of the role that you have, I think Ann talked about the role with prevention of cancer and it’s very interesting that more and more we hear about the need to get the fast foods down that the fat that those kids are taking in is way in excess of what they need and we area doing to see a lot more cancer in younger people possibly because of their high fat intake. And that’s sort of thing that come up in schools.

Adolescents with chronic conditions. Joan-Carles Suris.

Good morning, I am Joan-Carles Suris and I work in Barcelona, Spain, directing an adolescent unit in a private hospital. OK. My grandmother is 95 years old and she has two great favourites. First one is royal family, although she says that since Princess Grace died things are not what they used to be. Her other great favourite is Barcelona soccer team and she says that players don’t play like they used to play and she says probably because football players today earn too much money and we agree on that. But the fact is that one of the things that she very often says that during these 95 years things have changed a lot and this world goes and goes faster every day. She often tells me that when she was born there were practically no cars in the streets and now we fly to the moon. When she was young to go to America was an adventure and now it is 6-hour flight. And she says that it’s difficult for her to understand things nowadays. The century we are living in is a century of great changes and especially in the second part of the century things are going so fast that sometimes it’s difficult to follow. And this is true for the medical science too.

In the last 30 to 40 years medicine has achieved so much that many of the diseases that were usually fatal in children are now being treated so well, not only with new treatments and also with a better use of already existing ones. Now these children survive into adulthood. In fact you know that for the majority of children with chronic conditions that is 84% of them will survive at least to age twenty. I use cystic fibrosis as an example, in ’69 there was medium survival age was 14 years and some 20 years later it has doubled and was 28 years. Now we are over 30 I think. In fact the impact of the chronic condition both on the adolescent and his or her family depend on several variables. They need to be taken into account. They are the degree and type of incapacitation, the degree of feasibility, the prognosis, the course, the type and amount of treatment required, the severity and the symptomatology. But from an uncategorical point of view all the adolescent, no matter what chronic condition they have, we have to know that they have common problems, so that’s what we’ll be doing today, just talking about problems they have, no matter what kind of disease they have.

We know and this is not news that adolescents with chronic conditions are more likely to see their physician but again using CF as an example the number of visits in a study was 4.5 per year and almost over a third of CF patients were hospitalised at least once in the year with the minimum stay of 12 days. I think that the interesting part of it, this and other studies I found that many of adolescents with chronic conditions miss more days of school than can be attributed to the severity of the disease or the treatment. This fact implies that they have less contact with their peers, increased isolation and poorer academic results. In fact adolescents with chronic conditions are more likely to repeat grades to be drop-outs.

Parents pay a key role in the development of adolescents who have chronic diseases but mothers and fathers do not deal equally with the child’s condition. In fact we know that mothers are more likely to be distressed or depressed especially because they tend to focus on the daily needs while father tend to focus on more long-term requirements and problems. In the same situation mothers are more likely to drop their jobs to stay with the kids than fathers, that something that we know, and in fact often fathers have a tendency to find refuge in their work to avoid some situations at home. However it is not clear if divorce rates are higher in this population. One of the things we all do as parents no matter the situation of our children, we tend to be over-protective and that’s especially true for the adolescents with chronic conditions.

In the study done by Robert Blum in Minnesota they found in a group of adolescents with cerebral palsy that parental over-protection was significantly related to lower happiness, lower self-esteem, lower perceived popularity, higher self-consciousness and higher anxiety. And in fact we know that adolescents with chronic conditions are less likely to have a positive body image. Three studies, all done in the same year 1994, done in British Columbia with Roger Tonkin, found that 36% of girls with chronic conditions had a positive body image against 50% of the controls. A study done in Minnesota by Bob Blum - 48 against 60, and a study done in the city of Barcelona by our group is 49 against 61. And we know that an abnormal body image may lead to lower self-esteem again, segregation from peers, increased absence from school and other activities, increased anxiety over sexual functions and sexual relations and depression and /or anger. So there have been many studies exploring the emotional well-being of adolescents with chronic conditions  but they have always been controversial. Some studies show that there are no differences with their healthy counter-parts, other studies found an increased rate of emotional distress among them, and still others found that females have problems more often than males but that males are more severely affected.

Using a sample in Barcelona, these are surveys we did among school-kids aged 14 to 19 over 3000 subjects, girls with chronic conditions are significantly more likely to have emotional problems, to feel in a bad mood, to feel sad, to feel that nothing amuse them and to have suicidal thoughts. But they are also significantly more likely to have depressive symptomatology, so just frequent crying, sleeping problems or lack of appetite. Almost one fourth of them feel that they need professional help, and these are also significant, but you ask them if they have seen a mental health professional, there are no differences between two groups, and this is the only one that is not significantly different. We did the same study with males, and we found no differences between males, I don’t know if that is that males at least in Spain just don’t cry.

So the process of puberty is rarely affected by the disease but the disease itself or the treatment can delay its beginning. And this in a time when the main objective is to be normal. The later maturation can be interpreted as having a damaged body. As puberty progresses differences can become accentuated and feeling different from peers may lead again to social isolation. Again using CF we found that puberty in girls with CF the peak height velocity was around a year later than controls and the maximum peak height velocity was around 2 cm lower and the menarche was around 2 years later. And in fact we looked at age in menarche for different conditions and if we take a standard in a Western society it’s between 12 and 13 years, well for CF girls it was between 14 and 15, for girls with diabetes it was between 13 and 14, with sickle cell it was between 14.5 and 15.5 and for chronic kidney disease it was almost 16 years.

I need to talk a bit about sexuality let me tell you very shortly a story. When I was training in Minnesota with Bob Blum I was finishing my MPH and I needed a theme for my project, so I went to Bob and I said, “Bob, what could I write about?” And he said two probably most famous of his words which are, “I have a wonderful opportunity for you”. Well those of you who know him, if he ever tells you “I have a wonderful opportunity for you” it means it usually a great idea and it’s usually a hell of work, so when he said that after two years with him I said, “Well, let me think about it”. Two days later I went to him and said, “It really a wonderful opportunity because I found that I could do the review of all the published literature in less than 2 hours and they all fit in one slide, so it was wonderful. So it was by late ’91 -early  ’92, all we know were the four studies, the first one done in London  in ’77 studying adolescents with spinal biphida, only one girl was sexually active, it was a very low rate, a few years later they did another study with several diseases, 26% of adolescents were sexually active, and most of them using contraception, there was a study done in ’86, and it was done in New York city with several diseased girls, several chronic conditions, they found that in fact girls with chronic conditions were more likely to be sexually active than the controls. And finally the study done by Barbara Kramer in Ohio I think, they found that for spino-biphida it was 28%, for cystic fibrosis it was 43% and for controls were 60%.

The results of the study we did in Minnesota found that for boys the cases under control for visible and non-visible conditions were practically the same: 46 against 45, 43 against 39, and for girls it was also very similar: 42 - 38,  37 and 33. So no big difference here. There is a study done by Marie Chauker in France and was published in ’96 and they found that differences indicate that males with chronic conditions were more likely to be sexually active: 52 against 42% and girls were also more likely to be sexually active: 37 against 28. In continuing looking at that we wanted to know if other risk behaviours such as using drugs was also more often, happened more often or less often in adolescents with chronic conditions, these are again data from our survey, and we found for those having ever tried tobacco there were for females no differences; 72 against 74, for those being regular smokers again no differences: 1/3 in each case, for ever trying alcohol around 80% in both groups and for ever trying cannabis it’s 15 and 12% and no differences between groups. For males the same thing, the only one for cannabis it’s 14 against 25, the difference was not significant, but the number was point .6 probably because the numbers were small.

One other thing we’ve been talking a lot lately is resilience and individual family and community factors together with the characteristics of the condition can predispose to risk and on the other hand factors associated with resilience are having a confidence, having mastery, having high self-esteem, having a significant other, being able to discuss stress with others, having a non-parental adult to turn knowing where to go for support, having normal adolescent experiences developing leisure activities and interests. And we also often say that when kids with chronic conditions get to adolescence one other thing they do is not being compliant with treatment and in a time when the goal is to achieve independence being compliant means accepting that he or she is dependent on the disease, on treatment, on the health professionals, on the family or whatever. And not being compliant is just the way of showing that they are independent. So I think it is very important when you plan a treatment for an adolescent with chronic conditions to have him or her involved in the planning.

Many of the aspects of adolescents that I have been discussing here are related to each other and it’s difficult to view one without the other. According again to Bob Blum the factor associated with optimum functioning of chronically ill adolescents are family and peer support and knowledge of one’s physical condition, involvement with health care course, having a network of friends with and without disabilities and parental support without over-protectiveness. Just to end with, a health care professional’s goal must be to encourage these youths to develop their full potential and help them through their adolescent years,  because we must remember that even though they have a chronic condition, they are still adolescents. Thank you very much.

Chair person. Thank you very much for a lovely presentation. In response to question from the audience –

 Answer: Adolescents with chronic conditions are less likely to receive any kind of guidance on sexuality or drugs than normal peers. The other thing is that in my country most of these kids are seen in specialised hospitals. If they go the primary care physician it is to get a prescription and that’s all nobody takes care of their needs. Specialists are good at treating the disease but that’s it. Primary care physicians usually say ask your specialist, so they don’t know where to go, parents too, not only the kids, they don’t know what to do with the kids.