Workshop ESPU-N, 25 april 2013 - Genoa, Italy

Hanny Cobussen-Boekhorst & Karen Kwak

  1. Introduction, aim of the workshop: To inventory the care for Spina Bifida patients given in Europe and the relation to international guidelines.
  2. Interactive workshop, all participants receive information about this workshop, guidelines, and questions at their home-mail address before the ESPU-N congress started.
  3.  Questions:
    1. What’s the amount of Spina Bifida patients:
      1. in your country and…..
      2. in your centre?
    2. How is the care for Spina Bifida patients organized?
      1. in your country and….
      2. in your centre?
    3. What’s your role as nurse practitioner/ nurse specialist in the multidisciplinary team?
    4. Are you familiar with the international guidelines that we send to you?
    5. Do you use these guidelines?
    6. Are parents invited to participate in the care for their child?
    7. If yes: in which way?
    8. How many patients have/ use:
      1. CI(S)C & medication:…
      2. Bladderaugmentation & CI(S)C:…
      3. Bladderaugmentation & Mitrofanoff & CI(S)C:…
      4. Other:...
    9. Health care insurance (reimbursement), is this well organized in your country?
    10. Is the transition of patients organized when they have to move to the adult urology care?
    11. At what age will the transition be started and by whom?
    12. Is sexuality a topic in the consultation, at which age and by whom?
    13. Is there a patient association special for Spina Bifida patients in your country?
    14. When you analyze the care that is given in your centre/ country, what are the successes and what is not so successful?
    15. Do you have points/ ideas to increase the care of Spina Bifida patients?

INVENTORY: Statements Spina Bifida workshop Genoa 2013.

  1. Bladder augmentation & Rec. UTI
    Do you recognize this problem? Which interventions do you use?
    Do the guidelines support you? Do you have best-practice experiences?

    We all recognize the problem of stones(1) and UTI(6).
    We use other catheters, more (4) / bigger eye’s, higher CH; take care of better washout of the mucus, rinse more often, also with a higher volume until 200 ml., use “Acetylcysteïne”.
    Guidelines support us, yes/ no. Also a lot working with best-practice.
    Best-practice: pain and CISC ► use catheter with flexible tip.
    UTI: Cranberry/ demanose (high dose of cranberry).
  2. SB kids should be obligate to do sports and go to a dietitian.
    This is their own responsibility!!
    Everyone is aware of this problem, especially for SB children, question is why do SB children have a slow and different metabolism? Most of them have a big belly, even when they don’t eat that much. Does hormones influences their body growth, metabolism?
    SB children should be stimulated to do sports and must be aware of the need to lead a healthy life. We know that this is very different for most of the children, because they feel that they are limited in a lot of different ways in life, and eating/drinking is the only thing that they can do by themselves and therefore very important.
    This is a shared responsibility, child, parents, healthcare workers and insurance companies.
    Are there activities explored in your center/ country regarding this problem?
    In some Scandinavian countries there are welfare organizations that sponsor the sports of wheelchair-bound children.
    In other countries some “catheter- or medical firms” sponsors the sports of wheelchair-bound children.
    In the Netherlands there are special institutes for disabled children/ adolescents, sports and healthy life are important issues in these institutes. Not everyone is familiar with these schools, in the UK, SB children go to mainstream schools, and sports together with the other children from the class who are not disabled.
  3. Children with SB have a good quality of life.
    Childs perception, family structures ► this is very important for the QoL of the SB child.
    In the literature there are many different QoL questionnaires used.
    Evaluation of QoL ► different perception, one feels fine somebody else think that that person is unhappy►more investigation about QoL is necessary.
  4. As a NP everything belongs to your function / Only urological care belongs to your function.
    Most agree that we have many different tasks ► total care for SB children ► given by the NP/ nurse specialist. There is a difference in care ► some also give healthcare/ training/ instruction in the home situation and at school.
  5. Adolescents must have the opportunity to decide when they are ready for independency / Parents decide when it’s time for independency.
    We feel that it’s not so simple, because every child and family situation is different. But we must motivate and stimulate child and parents to be aware of the need for transition. Why is this so important, why do you have to start at an early age and why do you make small steps?
    There is a big gap between the care that is given at the children’s ward and the adult ward.
    We should investigate in our colleagues of the adult care ► than they will learn and be aware of the need for transition.
    Transition and independency are different things;
    Transition = the move to adult care
    Independency = we discussed this theme, not every child can reach this.
    Maybe is interdependency a bettter theme, this is used in Scandinavian countries.
    Interdependency = not every child can reach independency

Attached files