Outcome by Gestational Age Table: the views of parents and doctors.

Thhg Koh, NICU, Kirwan Hospital, Townsville, Queensland, Australia

Anne Casey, mother, Preemie-L listowner, Melbourne, Australia

INTRODUCTION: Parents of extremely premature babies may have problems understanding the information given regarding the potential outcome of their babies. They may also be given conflicting information about outcomes by different members of the perinatal team. We have previously described an Outcome by Gestational Age Table for babies less than 29 weeks which, if the parents so wish, could be given to the parents after they have spoken to a neonatologist.

AIM: To document the views of parents and doctors of the Outcome by Gestational Age Table.

METHODS: A copy of the Outcome by Gestational Age Table and a questionnaire seeking parental views on 17 aspects regarding the table was sent to parents of babies less than 29 weeks and to neonatologist/perinatologists.

RESULTS: The questionnaire was sent to 43 parents with babies less than 29 weeks gestation and 71 randomly chosen neonatologist/perinatologists. 35 (81%) parents and 45 (63%) doctors replied. The responses to each question were according to a 5 point score (1=completely disagree, 3=uncertain, 5 = completely agree). The results are expressed as percentages of respondents.

The table is easy to understand:

The table is misleading:

The table is useful:

Has too much information:

To be given to parents before their baby is born

The table is to be given after the baby is born:

The table frightens me and I would rather not know (parents):

The table frightens the parents and they should not know (doctors):

The table frightens me but I would rather know (parents):

The table frightens the parents but they would rather know (doctors):

The table should be given after a baby is admitted to the NICU:

I feel more confident after I have read the table (parents' responses only):

I feel more frightened after I have read the table (parents' responses only):

I will show the table to the people who support me (responses from parents only):

A copy of the table should be left in my baby's notes so that other health care providers know what had been said to us:

There is a meeting which follows up the discussion the next day:

I think other parents will benefit from the Table (responses from parents only):

We would like to be given such a table (responses from parents only):

I would be interested to use this table in my practice:

We should support the parents who decide for non-interventions:

• Needs to be specific data for the hospital concerned. Also I find tables for preterm predelivery presentation useful e.g. some are stillborn, some die in the labour ward.

• Requires unit policy e.g. our incidence of phototherapy and use of indomethacin (treatment for PDA) are lower.

• Very useful.

• This information is very interesting and very useful, from my point of view. Do you have the figures of normal neurological function vs gestational age, and what are the local figures like?

• I think this sort of thing is very helpful as it does ensure consistency. It would be interesting to do a post test survey to get some idea of how parents have understood and interpreted the information.

• The chart is very good and I congratulate you on it. Local hospital figures should be used rather than using someone elses. The transfusion rates are rather high, are they not?

• Some of the exact percentages not necessary though the conditions need to be mentioned. When range over gestation is narrow e.g. 80-100 % or 10-20%) the columns are not necessary - do not need to be that exact. Criteria for treatment varies from unit to unit - these conditions need to be mentioned but statistics not necessary. When % is high (80-100%) exact % not too meaningful.

• Whilst I am sure that this is a useful adjunct to discussion, I am wary of anything that might limit parents to thinking along certain lines - the lines we would like them to think along. Their own previous life experience might have more bearing on decision making than numbers that we supply them with whether via booklets, tables, videos or websites. I think this type of info encourages discussions to be one way street. Us telling them what should and happen rather than them feeling comfortable that their emotional and spiritual responses to their situation are just as important as numbers and statistics. Culturally difficult too - if it is on the hands of God as a number of my families believe, this type of data is sometimes offensive to them. In particular I would not like to see standardised handouts to all parents in all situations. Perhaps this has a better application to other medical staff involved with the parents .... I am also a little concerned about parents maybe choosing to not persist with a 26 or 27 weeker after looking at this ... maybe even with a 25 weeker. I feel that boxing babies into statistical outcomes and numbers doesn't do justice to the person or the baby.

• The table does not really provide information regarding "quality" of survival and is but one tool to help discussion.

• Parents are happy if survival is 80%. They are shocked and dismayed if mortality is 20%. It is not at all obvious to them that these are both the same piece of information. Twins are born at 25 weeks, mortality is 50% or 1 in 2. One dies. So the other will definitely live think the parents.

• A very good idea. It would be better to use the Australian and NZ figures where possible. ? add neurodevelopmental outcome figure (institutional and interstate) if available.

• Table too complete for use for general guidance. What is the purpose of documenting who was there etc?

• Maybe improved by changing medical abbreviations IVH, PVL to simple terms they may understand.

• I agree it is reasonable to not intervene on a 400 gm 23 week baby but for a 1200g 28 week baby who is well at birth, I think it is not reasonable to not intervene. Where is the magic line? There isn't one and never will be. It is a fuzzy grey zone full of experience, prejudice, fact, fiction, urban myth, women weekly articles, hopes etc. ...

• I use something similar, in graphic form. Something written for the parents to keep is useful (we don't do that usually). In my view, it is very good but I suggest some refinements ... Parents consulted prenatally should also be given the odds of FDIU or death before NICU. Replace jaundice with ROP. I might place IVH/PVL after survival, have both of them is larger font ...

• A helpful addition to parent/neonatologist discussion.

• Very difficult to generalise on behalf of all one's patients. As a quantitative creature, if I were a parent, I would very much appreciate this detailed information. Perhaps after careful counselling of parents re chances of survival and likely complication, we should ask for their consent to be provided with quantitative sheet.

• If possible, splitting up 25-26 and 27-28 would be more useful. Survival is not very well stated. % survival is most important. Total number should not be as prominent. Qualifications in accompanying note important. Otherwise great idea. We use something similar.

• Must differentiate survival of all livebirths vs that subset admitted to NICU - very different at 23-24 weeks. Need data for each institute - should reflect their individual approaches for survival at margin of viability (23-24 weeks); aggressive vs conservative approach.

• Excellent post.

• It is important for other paediatric staff, as well as obstetric, midwifery and nursing to know what has been said. Again what applies to a group of infants may not necessarily apply to this infant.

• I would applaud a gestation/survival/disability table for counselling prior to delivery but leave out all other information until the admission when a general information booklet fills in other areas. There would be widespread interhospital differences with some of those statistics.

• We tried to absorb all the information given to us. At times we reached saturation point and could absorb no more. But we found that later on when the information was digested we were ready for more. I think that it is important for the health care professional to be able to recognise the over-saturated parents and "feed" them more information when the parents are eager and ready. This may be impossible but I really think that it would be beneficial to the parents. I think we were told some things that we just really could not absorb because we had too much going on in our heads already.

• My husband and I would handle this type of information well but not all parents can. I do think everyone should at least be presented with the offer of the information though. I was in hospital for over a month before labour so I had plenty of time to research this type of data and then to accept what I had found. If the premature birth is sudden, a parent may be too overwhelmed to have so much information at once.

• As long as one remembers to emphasise that normal head u/s, grade 1 and II IVH that have resolved do not necessarily mean no cognitive problems later on!

• Having a baby in NICU is such a heartbreaking experience. We need to be encouraged to participate in the care of our babies, and to understand as far as possible what's happening to them. We're the ones who take them home, still fragile and needing a great deal of love and comforting ... We need to understand and be part of our baby's early life, or we suffer as much as they do.

• Your chart is wonderful. I wish to God that I had seen it prior to our twins being born. When I was put in hospital at 27 weeks gestation ... I begged my obstetrician for information daily I was told by him "one day at a time". I tried to tell him that the more info I have the more calm I'd be about things. I was kept in complete darkness and I supposed for the doctors and nurses concerned that made me a good patient because I had nothing to ask for, nothing to say, nothing to comment. After two weeks I was already becoming depressed and felt that there was no hope for my babies. I stopped doing my foetal movement monitoring and just layed there all day crying because I figured my babies were going to both die and the staff just didn't want to tell me. For all I knew, babies at my gestation couldn't survive birth. I didn't have a clue that babies born at 29 weeks could take a breath and possibly even keep breathing and live. I had no idea what was to come and just assumed that they would both die and just prayed for the labour to be over with.

• The first set of statistics are a little confusing but they could easily be re-worded to make them easier. All acronyms should be spelled out at least once.

• My husband and I discussed your last point. I believe support of a non-intervention decision should also depend on the severity of the child's problem. My husband felt that the parents should be supported regardless of the injuries.

• I would like to see the table incorporating IUGR tables. Some mothers do not want to know averages - I do. I know that they are only averages. For me knowing the survival rate of my one pound baby helped me brace myself for the long road ahead. I still take it one day at a time because that is all I can handle.

• Also include how the statistics change if multiples are involved. How steroids and other stressors change the result. I would also like to see an additional table of possible premie problems besides just being on oxygen and IVH. If I had known the possibilities ahead of time, I wouldn't have taken it so hard. I want to be prepared. Other parents may not. Like the chart, the individual should be looked at.

• The table is useful but the timing of when it should be used should depend on the circumstances. I am very well educated and I consider myself an "information hound". However I was so frightened during my week of bedrest before my 25 weeker was born that I do not think it would have been productive to show this to me, particularly given that they were trying to keep me calm and control my blood pressure ... The comment about babies born at 25 weeks and less is very grim. While I know you are trying to prepare parents for the worst case, the information should be balanced with the fact that some 23-25 weekers not only survive but are perfectly normal children. While you cannot promise someone that their baby will fall into this category, this is a fact that should be included. As a parent of one of those 25 weeker who appears to be perfect in every way, I do not think this gives false hope.

• We think the table is a great idea. I think it would have been nice to have it BEFORE ... was born so we could see what could happen. We do think parents should be offered the table and should be allowed to take it in their own time, if they decide to take it at all. We are practical people who like to know the truth upfront. But I know that some people would rather not know.

• I wish we had been given something like this. This is exactly what I was asking for from the staff in my constant requests for written information. I was writing down what the doctors told me because I am a visual learner and in my shock, fear and confusion I could only grasp 50% of what was said to me. I could have poured over this table and finally come to understand what all the professional babble was about.

• It would be ideal to have the information before the baby is born if you are in hospital for a while before the baby is born or have a high risk pregnancy.

• I would like to see a little balance provided by letting parents read/watch a video of a "success story that beat the odds".

• I feel like this table is useful, but how and when it is presented to parents plays a major factor in how useful it would be. Personally I am thankful that at the time of the birth that I did not know that odds of our baby's survival. We were told that the first three days were crucial. We were also told what to expect as far as how his general health would be. As each step of his treatment progressed, the doctors and nurses (and other medical personnel) informed us of everything. The information was always in verbal form with a question and answer period afterwards for both parents. There were also "premie books" and medical journal available to us.

• The majority of parents and doctors responded to our request for their views on such an aid in communication.

• The majority of parents find the table: easy to understand, not misleading and do not have too much information.

• Although the information in the table is frightening, most parents would rather know.

• Parents were less certain regarding the optimal timing of receiving the Table.

• The majority of doctors thought the table is easy to understand but has too much information. The doctors also made useful recommendations to improve the structure of the table.

• The majority of doctors felt that the table is useful and there is ambivalence about using it in their practice.

• The comments given by parents and doctors seemed to have more in common with each other. Whether the information is helpful or not is may be depened on the timing of parents receiving it. Both parents and doctors agree that the information might be more helpful if it was split into two parts to be given in two stages. There is no doubt that parents want the information but whether they want it all at once is uncertain.

• We must continue to seek more comments and information from parents and health care providers in perinatology to help us to rigorously evaluate such aids in communications.

* Koh THHG, Harrison H., Morley C. Outcome by Gestational Age Table for Parents in NICU. (in press, Journal of Perinatology).

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