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An overview of challenges and possibilities of
        the Internet in fertility care

                            Annemijn Aarts,
Pieter van den Haak, WillianneNelen, Wouter Tuil, Marjan Faber, Jan Kremer


Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands




                                     Medicine 2.0 Maastricht 2010
80.000.000 infertilepeopleworldwide


                                         1 out of every 4 couples1



Anyform of reducedfertilitywithprolonged time of unwanted non-conception2

                  Cause


                           Male
                           Female
                           Both
                           Unexplained

                                                         1Nachtingall, FertilSteril2006
                                                       2Gnoth   et al., Hum Reprod 2005
Itdoesn’tcome easy…




             Reproductivetechniques, such as
             IVF

                      1Verhaak   et al., Hum Reprod Update 2007
                                           2Schmidt, Lancet 2006
Fertility and reproductionembedded in our lives…
Ideal Internet population1,2

 Emotional impact

Stigmatisingcondition

       Young

  Highlyeducated

Need forinformation

 Want to beinvolved

 Lookingfor support

                                        1Weismann   et al., FertilSteril 2000
                                         2Haagen et al., Hum Reprod 2003
However, notintegratedintousual care.. yet!




eHealth                                  Clinicalpractice
Studyobjectives



1. Overview of current Internet applications in
   reproductivemedicine

2. Methodologicalconsiderations and
   recommendationsforfuture research
METHODS
5 databases




1217 studies
               Patient-focused
               eHealth




18 studies
Data extraction and synthesis




1.   Type of usage and behaviour of web-basedapplications


2.   Effects of web-basedapplications
RESULTS
Infertilityspecific Internet applications


Online support groups
-  Qualitative research
-  Social and emotional support

Decisionaid
-  Oncologicalpatientsfacinginfertilitydue to chemotherapy
-  RCT and before-after design: small sample sizes
-  Knowledge, decisional conflict

Psychoeducationaltreatment
-  Aim: reducing stress, anxiety, depression
-  RCT: No orsmalleffectsfound
Infertilityspecific internet applications (cntd)


Personal Health Record
-  Generic and personalinformation
-  Communication (private forum and chatroom)
-  Online behaviour
-  RCT: no effect onpatientempowerment

Expert Forum
-  Multidisciplinary team
-  Content of requestsstudied
-  Patientssatisfied
Summary of findings



     • Patients are enthusiastic
     • Patientsfindithelpful and supporting
     • Effectivenesscouldnotbeestablished, which is
       neededforsuccesfulintegrationintoclinical care

However….

     • Someinterestingconclusionscanbedrawn
DISCUSSION & CONCLUSIONS
(1) Fills the gap betweenpatients’ needsand the
                          supportclinicscan offer


PHR (Tuil et al., 2009)




Stages of IVF treatment
(1) Filling the gap betweenpatients’ needsand the
                supportclinicscan offer


      DA (Meneseset al.; Huyghe et al.2010)


         Oncologistscannotfullfil the
             informationneed of
       oncologicalpatientsonfertilitypr
                  eservation
(1) Filling the gap betweenpatients’ needsand the
                supportclinicscan offer


                                       Forum (Malik, 2008)


                                       Support forinfertile
                                             men
(2) Connected to primary care process


Chat topics     van Selm, et al. 2008

1. IVF treatment
2. Childlessness

Requestson Expert forum         Himmel, et al. 2008

1. Information and explanation
2. Guidance in decisionsduringtreatment

Online support groupse.g. Malik &Coulson, 2008, 2010

1. Lookingforpatientswhowereundergoing the same at that moment
(3) Improvingquality of fertility care bymakingit more
                       patient-centred


Tailoring care to individualneeds and preferences (Berwick, 2002)

Core elements of patient-centredfertility care

Dancet et al, 2010        Online peer support

Van Empel et al, 2010     Access to theirmedicalhealth record
Patientinvolvement
                          Accurate and complete information


Collective level
Patientscanunite online  Votewiththeirfeet  Qualityimprovement
METHODOLOGICAL CONSIDERATIONS &
      RECOMMENDATIONS
(1) Itrequires time to mature



• Follow up period
• Not mentionedor maximum of 6 months


           Hansen, 2007
                     9 months to mature
(2) Prevent high attritionrates


Sextonet al. 2010                67%           %

Haemmerliet al.2009              50%

Especially in fertility care
             -Drop out1
             -Pregnant along the way
                                                                         time

                      User-centredintervention:
           Patients as anintegral part of development team

     E.g.Personal Health Record (Tuil et al)

                                               1Brandes   et al., Hum Reprod 2009
(3) Study design: Randomizedcontrolled trial not the gold
                           standard


•   RCT is not patient-centred2

•   eHealth is patient-orientedinstead of disease- or doctor-oriented1


                   Patients free to choosewhat to use



•   Dynamic and changingcharacter of the Internet3



                                                  1Swan; 2Bensing,   2000; 3Potts, 2006
(4) The value of observational and qualitative studies in
                       eHealth research


• Choosingappropriate ‘ingredients’ requiresknowledge of
  workingmechanism
            Shedlightonwhyitworks (ordoesn’t)3



• More able to detectpossible‘sideeffects’ and
  chooseappropriateoutcome measures1-3




                                       1Smulder,   2010; 2Kohler 2009; 3Shrier, 2007
eHealth in fertility care is promisingfrom a
patient’sperspective, although more research is needed




                                                          Twitter:
                                        aartsja.aarts@obgyn.umcn.
Questions are
                     guaranteed in life;
                       answersaren’t
                        (Francis Bacon)




Thankyouforyourattention!
                                       Twitter:
                     aartsja.aarts@obgyn.umcn.

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Challenges and Possibilities of Internet in Fertility Care

  • 1. An overview of challenges and possibilities of the Internet in fertility care Annemijn Aarts, Pieter van den Haak, WillianneNelen, Wouter Tuil, Marjan Faber, Jan Kremer Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands Medicine 2.0 Maastricht 2010
  • 2. 80.000.000 infertilepeopleworldwide 1 out of every 4 couples1 Anyform of reducedfertilitywithprolonged time of unwanted non-conception2 Cause Male Female Both Unexplained 1Nachtingall, FertilSteril2006 2Gnoth et al., Hum Reprod 2005
  • 3. Itdoesn’tcome easy… Reproductivetechniques, such as IVF 1Verhaak et al., Hum Reprod Update 2007 2Schmidt, Lancet 2006
  • 5. Ideal Internet population1,2 Emotional impact Stigmatisingcondition Young Highlyeducated Need forinformation Want to beinvolved Lookingfor support 1Weismann et al., FertilSteril 2000 2Haagen et al., Hum Reprod 2003
  • 6. However, notintegratedintousual care.. yet! eHealth Clinicalpractice
  • 7. Studyobjectives 1. Overview of current Internet applications in reproductivemedicine 2. Methodologicalconsiderations and recommendationsforfuture research
  • 9. 5 databases 1217 studies Patient-focused eHealth 18 studies
  • 10. Data extraction and synthesis 1. Type of usage and behaviour of web-basedapplications 2. Effects of web-basedapplications
  • 12. Infertilityspecific Internet applications Online support groups - Qualitative research - Social and emotional support Decisionaid - Oncologicalpatientsfacinginfertilitydue to chemotherapy - RCT and before-after design: small sample sizes - Knowledge, decisional conflict Psychoeducationaltreatment - Aim: reducing stress, anxiety, depression - RCT: No orsmalleffectsfound
  • 13. Infertilityspecific internet applications (cntd) Personal Health Record - Generic and personalinformation - Communication (private forum and chatroom) - Online behaviour - RCT: no effect onpatientempowerment Expert Forum - Multidisciplinary team - Content of requestsstudied - Patientssatisfied
  • 14. Summary of findings • Patients are enthusiastic • Patientsfindithelpful and supporting • Effectivenesscouldnotbeestablished, which is neededforsuccesfulintegrationintoclinical care However…. • Someinterestingconclusionscanbedrawn
  • 16. (1) Fills the gap betweenpatients’ needsand the supportclinicscan offer PHR (Tuil et al., 2009) Stages of IVF treatment
  • 17. (1) Filling the gap betweenpatients’ needsand the supportclinicscan offer DA (Meneseset al.; Huyghe et al.2010) Oncologistscannotfullfil the informationneed of oncologicalpatientsonfertilitypr eservation
  • 18. (1) Filling the gap betweenpatients’ needsand the supportclinicscan offer Forum (Malik, 2008) Support forinfertile men
  • 19. (2) Connected to primary care process Chat topics van Selm, et al. 2008 1. IVF treatment 2. Childlessness Requestson Expert forum Himmel, et al. 2008 1. Information and explanation 2. Guidance in decisionsduringtreatment Online support groupse.g. Malik &Coulson, 2008, 2010 1. Lookingforpatientswhowereundergoing the same at that moment
  • 20. (3) Improvingquality of fertility care bymakingit more patient-centred Tailoring care to individualneeds and preferences (Berwick, 2002) Core elements of patient-centredfertility care Dancet et al, 2010 Online peer support Van Empel et al, 2010 Access to theirmedicalhealth record Patientinvolvement Accurate and complete information Collective level Patientscanunite online  Votewiththeirfeet  Qualityimprovement
  • 22. (1) Itrequires time to mature • Follow up period • Not mentionedor maximum of 6 months Hansen, 2007 9 months to mature
  • 23. (2) Prevent high attritionrates Sextonet al. 2010 67% % Haemmerliet al.2009 50% Especially in fertility care -Drop out1 -Pregnant along the way time User-centredintervention: Patients as anintegral part of development team E.g.Personal Health Record (Tuil et al) 1Brandes et al., Hum Reprod 2009
  • 24. (3) Study design: Randomizedcontrolled trial not the gold standard • RCT is not patient-centred2 • eHealth is patient-orientedinstead of disease- or doctor-oriented1 Patients free to choosewhat to use • Dynamic and changingcharacter of the Internet3 1Swan; 2Bensing, 2000; 3Potts, 2006
  • 25. (4) The value of observational and qualitative studies in eHealth research • Choosingappropriate ‘ingredients’ requiresknowledge of workingmechanism Shedlightonwhyitworks (ordoesn’t)3 • More able to detectpossible‘sideeffects’ and chooseappropriateoutcome measures1-3 1Smulder, 2010; 2Kohler 2009; 3Shrier, 2007
  • 26. eHealth in fertility care is promisingfrom a patient’sperspective, although more research is needed Twitter: aartsja.aarts@obgyn.umcn.
  • 27. Questions are guaranteed in life; answersaren’t (Francis Bacon) Thankyouforyourattention! Twitter: aartsja.aarts@obgyn.umcn.