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Quality in MAR perceived by the eastern european patient
 

Quality in MAR perceived by the eastern european patient

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    Quality in MAR perceived by the eastern european patient Quality in MAR perceived by the eastern european patient Presentation Transcript

    • Quality in Medically Assisted Reproductionperceived by the Eastern European patient Alina Beatris DAVID July, 2012
    • IntroductionSix Eastern European countries have been taken into consideration forthis presentation: Bulgaria (BG) Czech Republic (CZ) Croatia (HR) Poland (PL) Romania (RO) Slovakia (SK)Common features:- Former communist countries- The number of clinics has grown rapidly in the last years Country No. of public clinics No. of private clinics Total no. of clinics Bulgaria 4 26 30 Croatia 7 7 14 Czech Republic 5 34 39 Poland 4 43 47 Romania 2 21 23 Slovakia 2 7 9
    • The situation regarding legal frameworkfor MAR and regulation:Country MAR legislation EUTCD Competent Accreditation Reporting to implemented Authority compulsory a National for licensing Registry in placeBulgaria Specific Yes Yes Yes CompulsoryCroatia Specific Not in EU Yes Yes CompulsoryCzech Specific Yes Yes Yes CompulsoryRepublicPoland No No (signed, not No No No implemented yet)Romania General health Yes Yes Yes Compulsory lawSlovakia Only No No Yes – simple to No recommendations get from Ministry of HealthSource: ESHRE Comparative analysis on MAR in EU: Regulation and technologies 2009,updated with Patients Associations info 2012
    • Quality Dimensions of quality of care Donabedian Department of Health (UK) Council of Europe Maxwell (1992) IoM (2001) JCAHO (2006) (1988) (1997) (1998)Effectiveness X X X X X XEfficiency X X X X X XAccess X X X X XSafety X X X XEquity X X (X) XAppropriateness X X X XTimeliness X X XAcceptability X X Respect Respect Choice Pacient -Responsiveness Information centred- nessSatisfaction (X) XHealth improvement X XContinuity X Technical AvailabilityOther competence Efficacy Prevention/ Relevance early detectionSource: Assuring the quality of health care in the Euroean Union – Helena Legido-Quiley et al., 2008Notes: IOM: Institute of Medicine; JCAHO: Joint Commission on Accreditation of healthcare Organnizations
    • Four dimensions of quality in MAR - relevant fromthe patient’s perspective: Safe Patient Access Patient centred Effective
    • SafetyThe most common risks:- OHSS (ovarian hyperstimulation syndrome)incidence rate in 2008 – 0,8% of all stimulated cycles (de Mouzon et al.,2010)- Multiples pregnancies20,60% twin pregnancies in Europe in 2008 (EIM data - Focus on reproduction, sept 2011)FACT: In CZ the SET (single embryo transfer) is encouraged by de law In RO, PL - the patients are pleased when:- more than two embryos transferred- twin pregnancyCauses: insufficient information regarding the risks & financial aspects/ reimbursement More than 50% transfers in BG and RO were of three embryos or more in 2008 (EIM data - Focus on reproduction, sep. 2011) In SK – no data regarding the complication of treatments and multiple pregnancies In HR there were a significant number of triplets born after 2009 (according to the Croatian patient association) due to the restrictive law (maximum 3 oocytes to be fertilized)
    • EffectivenessSuccess rate (pregnancy rate, delivery rate etc.) = important aspect for the patientFACTS BG, CZ, HR, RO – the MAR statistics become public after > 1 year PL, SK – without compulsory National Registry to report the results- Lack of transparency Affect the patient’s decision regarding the choice of the fertility clinic- Types of results with no explanation or details
    • Patient Centred Infertility Care“Patient centeredness of fertility care and patient well being are related. Patients with a better QoL or lower levels of anxiety and depression report higher levels of patient centred fertility care.” (Aarts et al., 2011) competence of clinics attitude of and theThe concept includes 10 dimensions and staff, coordination relationship with staff,divided in system factors and human and integration, communication, accessibility, continuity patient involvementfactors (Dancet et al., 2011) and transition, and privacy, emotional physical comfort support Communication between patients and clinics - vary greatly both from country to country and from clinic to clinicThe patients in SK:- insufficiently informed about the possibilities they have regarding frozen embryos- they want a lead doctor during the treatment(According to a study made by the patient association from SK in 2008 – 2010)
    • Counseling & Support Counseling Country Counseling BG National program of social and psychological adaptation to couples with reproductive problems (2008 – 2011) CZ Available, no payment required for counseling during the treatment HR Compulsory before treatment PL Some clinics recommend it, most patients do not seek it RO Some clinics recommend it, other clinics have it as a compulsory requirement SK Some clinics recommend it, most patients do not seek it Support• The level and type of support offers by the clinics varies widely• The support given by the clinic staff is not given as a result of training• In RO and BG the patient associations organize support groups for the patients, under the coordination of psychologists
    • Patient associations campaigns• BG - “To donate life” - awareness campaign to encourage eggs and sperm donation - “Stay in the loop” – prevention and information campaign for teenagers• CZ - ”On non-genetic parenthood in another way” - education campaign - “How old would you like your parents to be?” – study• HR - Awareness infertility walk• PL - “Daddy – the most important word for every man” - awareness on male infertility - “Telling and talking” - issues on gamete and embryo donation• RO - “Infertility is a medical condition. Having a child should not be a luxury” - awareness and advocacy campaign - “Infertility exists. And it hurts.” – sensibilization campaign• SK - “Fertility tour” – each year, information and awareness concerning infertility and reproductive health
    • AccessEuropean Parliament “calls on the Member States, therefore, to ensure the rights of couplesto universal access to infertility treatment”(European Parliament Resolution on the demographic future of Europe, 2008)• Criteria for access to MAR treatment differ from country to country• Type of treatments allowed Country No. of cycles IUI No. of cycles IVF/ICSI r e BG - 3 A i c m CZ 6 4 if the first 2 are with SET c b or 3 without SET e u HR No limitation 6 s r s s PL - - e t m RO - Since 2011 – 1 IVF cycle for o e a limited no. of couples n SK - 0 to 3 (depends on the type t of health insurance) Source: “Equality of Access to MAR across Europe”, 2012 - Fertility Europe
    • Cross Border Reproductive Care (CBRC) - a consequence of the access limitation to MAROther reasons for travelling (Pennings et al., 2008a; Shenfield et al., 2010)- better quality of care- cheaper treatmentCZ and SKas favoritedestinations CZ Donation of gamete allowed Many donors SK Lack of regulation Treatments less expensive 15% of the Possible to have oocytes donations similar in Europe percentage – no reports and (EIM data) studies to confirm
    • Conclusions There is a huge gap regarding regulation in many of these countries Patient and professional associations must advocate together for regulation in this area and convince the policy makers that a legal framework which will allow high quality MAR treatments is necessary Future studies need to be done by adapting instruments that have been successfully tested in some Western European countries (e.g. Patient - centredness questionnaire infertility – van Empel et al. 2010)Patient associations could get involved!Challenges: Resource management (including funds) Language & cross-cultural barriers The availability and willingness of MAR treatments providers and beneficiaries
    • AcknowledgementsIskam bebe (I want a baby Foundation) – BULGARIA www.iskambebe.bgSdruzhenie Zachatie (Association Conception) - BULGARIA www.zachatie.org/ADAM (Association Conception) - CZECH REPUBLIC http://www.adamcr.cz/Nasz Bocian (Our Stork) - POLAND http://www.nasz-bocian.pl/RODA (Stork) – CROATIA www.roda.hrSOS Infertilitatea (SOS Infertility) – ROMANIA www.infertilitate.comObčianske združenie BOCIAN (Civil Association Stork) - SLOVAK REPUBLIC http://www.bocianoviny.sk/Fertility Europe - the umbrella organization of 22 patient associations, with a potential of25 million people who have difficulties in conceiving across the European Union. http://fertilityeurope.eu/
    • Thank you!