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The Swedish Maternal Health Care Register: Internal Validity, User Perspectives and Register Outcomes; and Experiences by Midwives in Antenatal Care
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Obstetrics and Gynaecology.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Det svenska mödrahälsovårdsregistret : studier av intern validitet, registeranvändarnas erfarenheter och registerutfall, samt barnmorskors erfarenheter av svensk mödrahälsovård (Swedish)
Abstract [en]

Background

Established in 1999, the Swedish Maternal Health Care Register (MHCR), collects data on pregnant women and their offspring. Since 2013, the MHCR has been a part of the Swedish Pregnancy Register (SPR). Data are entered manually into the MHCR by midwives in antenatal care (ANC). ANC is primarily organised within public primary health care in Sweden. Midwives are the primary providers of health care during pregnancy, and they are responsible for providing information about prenatal diagnosis to expecting parents.

Aims

This thesis investigated internal validity of MHCR data, and user’s experiences of the MHCR. Prenatal diagnosis was explored in regard to local guidelines and to background characteristics and pregnancy outcomes. Factors affecting the work situation for midwives in ANC, as well as their experiences on informing expecting parents about prenatal diagnosis were investigated.

Methods

Study I, II and III were cross-sectional studies. Study I included data from MHCR and medical records on 878 pregnancies during 2011. Study III analysed data from MHCR/SPR, in total 284,789 pregnancies for 2011 to 2013. Study II was a questionnaire study with a quantitative and a qualitative component, including 989 participants. Study IV was a qualitative study applying qualitative content analysis. Fifteen midwives participated in individual, telephone interviews.

Main findings

Overall, the degree of coverage of variables was high in the MHCR as well as in the medical records. For 17 of the 27 variables, agreement of data in both data sources reached 95% or more. Possible systematic errors were identified for two variables (Paper I). Midwives valued MHCR generally positively, although manual registration of data into the MHCR was perceived burdensome. Foremost midwives engaged in supervision regularly accessed data on pregnant women at their own ANC clinic (Paper II). Offers on prenatal diagnosis varied considerably between the 21 Swedish counties during 2011 to 2013. Maternal age and educational level demonstrated strong associations with uptake of prenatal diagnosis (Paper III). Midwives in ANC reported their work load as manageable. Clinical guidelines, continuing education, and collaboration in the chain of care of pregnant women, were supportive factors for midwives work situation in antenatal care. Administrative work load was perceived as strenuous and informing expecting parents about prenatal diagnosis was challenging (Paper IV).

Conclusions

Data in the MHCR demonstrated sufficient internal validity. MHCR was an underutilised source in operational planning of ANC. Offers and uptake on prenatal diagnosis was unequally distributed in Sweden. Midwives enjoyed their work in ANC. Administrative work was strenuous and informing expecting parents about prenatal diagnosis was challenging. The register can further develop its report systems to be used in a higher extent in evaluation and planning of Swedish maternal health care services. Expecting couples in Sweden should be offered the same opportunities on prenatal diagnosis. Pedagogical tools may facilitate midwives mission to inform expecting parents with varying pre-understanding about prenatal diagnosis

Abstract [sv]

Bakgrund

Det svenska Mödrahälsovårdsregistret är ett nationellt kvalitetsregister som används inom mödrahälsovården för uppföljning av verksamheten, i förbättringsarbete och som underlag för forskning. Mödrahälsovårdsregistret startade 1999 och samlar in data på gravida kvinnor, förlossningar och nyfödda barn. Sedan 2013 är Mödrahälsovårdsregistret en del av Graviditetsregistret, som består av tre delregister; Mödrahälsovårdsregistret, Fosterdiagnostikregistret och det Obstetriska registret. Barnmorskor inom svensk mödrahälsovård registrerar data manuellt vid två tillfällen i registret, dels i anslutning till inskrivningsbesöket, och dels efter avslutad graviditet, senast 16 veckor efter förlossningen. Barnmorskor inom svensk mödrahälsovård har skyldighet att erbjuda blivande föräldrar information om fosterdiagnostik. Däremot utförs de fosterdiagnostiska undersökningarna på särskilda mottagningar, vanligen inom ramen för Sveriges kvinnokliniker. Med tidig fosterdiagnostik avses rutinultraljud i graviditetsvecka 17 till 20, kombinerat ultraljud och biokemiskt test (KUB), samt de invasiva undersökningarna fostervattenprov (AC) och korionvillibiopsi (CVS). Nästan alla gravida kvinnor kontrolleras inom mödrahälsovården. Majoriteten av mödrahälsovårdsmottagningarna bedrivs inom den offentliga primärvården. Barnmorskan arbetar självständigt och är ansvarig för kvinnor med okomplicerade graviditeter. Övriga uppdrag för barnmorskor inom svensk mödrahälsovård är, föräldrastödsverksamhet, rådgivning och förskrivning av preventivmedel, screening för livmoderhalscancer, samt utåtriktat arbete. I barnmorskans arbete ingår därutöver olika patientadministrativa uppgifter.

Syfte

Det övergripande syftet med avhandlingen var att undersöka det svenska Mödrahälsovårdsregistret ur följande aspekter: intern validitet i registerdata, användarnas erfarenheter, synpunkter och användning av registret samt registerutfall. Ytterligare syften var att undersöka stödjande och belastande faktorer för barnmorskans arbetssituation inom svensk mödrahälsovård och barnmorskors erfarenheter och synpunkter av att informera blivande föräldrar om fosterdiagnostik. vii

Metod

Studie I, II och III var tvärsnittsstudier. I Studie I jämfördes data i den medicinska journalen med motsvarande uppgifter i Mödrahälsovårdsregistret över 879 gravida kvinnor med ett förlossningsdatum under maj till juni 2011. Studie II var en enkätundersökning som riktade sig till samtliga barnmorskor inom svensk mödrahälsovård (N=989). Undersökningen genomfördes januari till mars 2012. I Studie III analyserades data på totalt 284,789 gravida kvinnor och deras nyfödda barn under perioden 2011 till 2013. Statistiska analyser som användes i Studie I, II och III var Cohen’s Kappa, Pearson’s Chi-två test, sensitivitet och specificitet, samt univariat och multivariat logistisk regressionsanalys. Studie IV var en kvalitativ studie där data insamlades vid individuella telefonintervjuer med totalt 15 barnmorskor verksamma vid olika mödrahälsovårdsmottagningar. Materialet analyserades med kvalitativ innehållsanalys.

Resultat

Variablerna uppvisade överlag en hög täckningsgrad i både Mödrahälsovårdsregistret och den medicinska journalen. Variabler gällande fosterdiagnostik uppvisade en något lägre täckningsgrad på cirka 90 %. Andelen identiska data i de båda datakällorna varierade från 73,9 % till 99,7 %. För 17 av de 27 undersökta variablerna var överensstämmelsen mellan de båda datakällorna, 95 % eller högre. Variabler relaterade till förlossningen (”enkelbörd/flerbörd”, ”levande fött barn”, och ”barnets kön”) var de variabler som uppvisade högst andel identiska uppgifter i de båda datakällorna. Systematiska fel identifierades för två variabler, ”andra trimester serum screening”, och ”antal barnmorskebesök”. Barnmorskor var överlag positiva till Mödrahälsovårdsregistrets webbapplikation, däremot upplevde en majoritet (70,7 %) av barnmorskorna med enbart patientarbete att den manuella registreringen var en betungande arbetsuppgift. Mödrahälsovårdsregistrets ingående variabler uppfattades som relevanta. I fritext frågorna kommenterades att en del variabler var onödiga, till exempel frågor om fosterdiagnostik medan andra variabler saknades i registret, exempelvis frågor om sjukdomar och medicinska komplikationer under graviditet och förlossning. Barnmorskor med arbetsledande uppgifter rapporterade i jämförelse med de barnmorskor som enbart hade patientarbete att de i högre utsträckning regelbundet extraherade data från registret avseende den egna mottagningen (p<0,001; OR=11,79 CI 95 % 7,43-18,69), och de uppvisade en minskad sannolikhet att ifrågasätta nyttan med registret (p<0,001; OR=0,29 CI 95 % 0,16-0,49). Erbjudande om fosterdiagnostik till blivande föräldrar varierade betydligt mellan de 21 landstingen under åren 2011-2013. Sex landsting erbjöd KUB till alla gravida viii kvinnor, nio landsting erbjöd KUB på indikation och fem landsting erbjöd inte KUB till gravida kvinnor. Ett landsting hade inga skrivna riktlinjer. Under samma tidsperiod var andelen kvinnor som genomgick ultraljud i graviditetsvecka 17-20, 97,6 %, KUB 33,0 %, AC 2,6 % och CVS 1,1 %. Moderns ålder uppvisade störst inverkan på genom-gången fosterdiagnostik. Utbildningsnivå universitet i jämförelse med lägre utbildningsnivå var associerad med en ökad sannolikhet att genomgå KUB (OR 2,30, 95 % CI 2,26-2,35), AC (OR 1,54, 95 % CI 1,46-1,63) och CVS (OR 2,68, 95 % CI 2,44-2,93). Barnmorskor inom svensk mödrahälsovård ansåg att arbetsbelastningen var hanterbar även om den var hög. Kliniska riktlinjer, regelbunden fortbildning, och samarbetet med kollegor och läkare i vårdkedjan för den gravida kvinnan beskrevs som stödjande faktorer i arbete. Den administrativa arbetsbelastningen upplevdes som krävande och att informera blivande föräldrar om fosterdiagnostik som utmanande.

Slutsats

Data i Mödrahälsovårdsregistret uppvisade god till mycket god täckningsgrad, överensstämmelse och intern validitet för de flesta variablerna i registret. Barnmorskor var överlag positiva till Mödrahälsovårdsregistret, även om arbetsuppgiften att föra in uppgifter manuellt i registret upplevdes som betungande. Erbjudande om fosterdiagnostik varierade avsevärt mellan olika landsting. Moderns ålder och utbildningsnivå var de faktorer som uppvisade störst inverkan på genomgången fosterdiagnostik. Barnmorskor uppskattade sitt arbete inom mödrahälsovården, men det administrativa arbetet upplevdes som krävande. Att informera blivande föräldrar om fosterdiagnostik upplevdes som utmanande. Mödrahälsovårdsregistret har en utvecklingspotential vad gäller dess rapportfunktioner och registerdata skulle i högre grad kunna användas i planering och förbättring av innehållet i svensk mödrahälsovård. Erbjudande om fosterdiagnostik till blivande föräldrar borde vara likvärdiga i samtliga landsting i Sverige. Pedagogiska hjälpmedel skulle kunna underlätta för barnmorskor att informera blivande föräldrar med olika kunskapsnivå vad gäller fosterdiagnostik.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2016. , 68 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1837
Keyword [en]
Quality registers, medical records, validity, degree of coverage, antenatal care, pregnancy, prenatal diagnosis, uptake, work condition, guidelines, epidemiology, qualitative research
National Category
Obstetrics, Gynecology and Reproductive Medicine
Research subject
Obstetrics and Gynaecology
Identifiers
URN: urn:nbn:se:umu:diva-126154ISBN: 978-91-7601-545-2 (print)OAI: oai:DiVA.org:umu-126154DiVA: diva2:998730
Public defence
2016-10-21, 135 X1, Norrlands universitetssjukhus, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-09-30 Created: 2016-09-30 Last updated: 2016-09-30Bibliographically approved
List of papers
1. Internal validity of the Swedish Maternal Health Care Register
Open this publication in new window or tab >>Internal validity of the Swedish Maternal Health Care Register
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2014 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 14, 364- p.Article in journal (Refereed) Published
Abstract [en]

Background: The Swedish Maternal Health Care Register (MHCR) is a national quality register that has been collecting pregnancy, delivery, and postpartum data since 1999. A substantial revision of the MHCR resulted in a Web-based version of the register in 2010. Although MHCR provides data for health care services and research, the validity of the MHCR data has not been evaluated. This study investigated degree of coverage and internal validity of specific variables in the MHCR and identified possible systematic errors. Methods: This cross-sectional observational study compared pregnancy and delivery data in medical records with corresponding data in the MHCR. The medical record was considered the gold standard. The medical records from nine Swedish hospitals were selected for data extraction. This study compared data from 878 women registered in both medical records and in the MHCR. To evaluate the quality of the initial data extraction, a second data extraction of 150 medical records was performed. Statistical analyses were performed for degree of coverage, agreement and correlation of data, and sensitivity and specificity. Results: Degree of coverage of specified variables in the MHCR varied from 90.0% to 100%. Identical information in both medical records and the MHCR ranged from 71.4% to 99.7%. For more than half of the investigated variables, 95% or more of the information was identical. Sensitivity and specificity were analysed for binary variables. Probable systematic errors were identified for two variables. Conclusions: When comparing data from medical records and data registered in the MHCR, most variables in the MHCR demonstrated good to very good degree of coverage, agreement, and internal validity. Hence, data from the MHCR may be regarded as reliable for research as well as for evaluating, planning, and decision-making with respect to Swedish maternal health care services.

Keyword
Validity, Degree of coverage, National quality register, Medical records, Pregnancy outcomes, Antenatal care
National Category
Health Sciences Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:umu:diva-93482 (URN)10.1186/1472-6963-14-364 (DOI)000341038200001 ()
Available from: 2014-11-28 Created: 2014-09-23 Last updated: 2017-12-05Bibliographically approved
2. User perspectives on the Swedish Maternal Health Care Register
Open this publication in new window or tab >>User perspectives on the Swedish Maternal Health Care Register
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2014 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 14, 613Article in journal (Refereed) Published
Abstract [en]

Background: Established in 1999, the Swedish Maternal Health Care Register (MHCR) collects data on pregnancy, birth, and the postpartum period for most pregnant women in Sweden. Antenatal care (ANC) midwives manually enter data into the Web-application that is designed for MHCR. The aim of this study was to investigate midwives? experiences, opinions and use of the MHCR. Method: A national, cross-sectional, questionnaire survey, addressing all Swedish midwives working in ANC, was conducted January to March 2012. The questionnaire included demographic data, preformed statements with six response options ranging from zero to five (0 = totally disagree and 5 = totally agree), and opportunities to add information or further clarification in the form of free text comments. Parametric and non-parametric methods and logistic regression analyses were applied, and content analysis was used for free text comments. Results: The estimated response rate was 53.1%. Most participants were positive towards the Web-application and the included variables in the MHCR. Midwives exclusively engaged in patient-related work tasks perceived the register as burdensome (70.3%) and 44.2% questioned the benefit of the register. The corresponding figures for midwives also engaged in administrative supervision were 37.8% and 18.5%, respectively. Direct electronic transfer of data from the medical records to the MHCR was emphasised as significant future improvement. In addition, the midwives suggested that new variables of interest should be included in the MHCR ? e.g., infertility, outcomes of previous pregnancy and birth, and complications of the index pregnancy. Conclusions: In general, the MHCR was valued positively, although perceived as burdensome. Direct electronic transfer of data from the medical records to the MHCR is a prioritized issue to facilitate the working situation for midwives. Finally, the data suggest that the MHCR is an underused source for operational planning and quality assessment in local ANC centres.

National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-103657 (URN)10.1186/s12913-014-0613-2 (DOI)000347354800001 ()25491418 (PubMedID)
Available from: 2015-05-26 Created: 2015-05-26 Last updated: 2017-12-04Bibliographically approved
3. Prenatal diagnosis in Sweden 2011 to 2013 - a register-based study
Open this publication in new window or tab >>Prenatal diagnosis in Sweden 2011 to 2013 - a register-based study
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2016 (English)In: BMC Pregnancy and Childbirth, ISSN 1471-2393, E-ISSN 1471-2393, Vol. 16, 365Article in journal (Refereed) Published
Abstract [en]

Background: Prenatal diagnosis involves methods used in early pregnancy as either screening tests or diagnostic methods. The aims of the study were to i) investigate guidelines on prenatal diagnosis in the counties of Sweden, ii) investigate uptake of prenatal diagnosis, and iii) background characteristics and pregnancy outcomes in relation to different prenatal diagnostic methods. 

Methods: A retrospective cross-sectional study using data from the Swedish Pregnancy Register 2011 to 2013 (284,789 pregnancies) was performed. Additionally, guidelines on prenatal diagnosis were collected. Biostatistical and epidemiological analyses were performed including calculation of odds ratios (OR) and their 95% confidence intervals in univariate and multivariate logistic regression analyses. 

Results: The national uptake of routine ultrasound examination, Combined Ultrasound and Biochemical test (CUB), Amniocentesis (AC) and Chorionic Villus Sampling (CVS) were 97.6, 33.0, 2.6 and 1.1%, respectively. From 2012, 6/21 counties offered CUB test to all pregnant women, nine counties at specific indications, and five counties did not offer CUB at all. Advanced maternal age demonstrated the highest impact on uptake of prenatal diagnosis. Further, university educational level in relation to lower educational level was associated with an increased likelihood of undergoing CUB (OR 2.30, 95% CI 2.26-2.35), AC (OR 1.54, 95% CI 1.46-1.63) and CVS (OR 2.68, 95% CI 2.44-2.93). 

Conclusion: Offers of prenatal diagnosis varied considerably between counties resulting in unequal access to prenatal diagnosis for pregnant women. The intentions of the Swedish Health and Medical Services Act stating equal care for all, was thus not fulfilled.

Keyword
Pregnant women, Prenatal diagnosis, Uptake, Guidelines, Antenatal Care
National Category
Obstetrics, Gynecology and Reproductive Medicine
Identifiers
urn:nbn:se:umu:diva-126164 (URN)10.1186/s12884-016-1165-8 (DOI)000388427200003 ()27876014 (PubMedID)
Available from: 2016-09-30 Created: 2016-09-30 Last updated: 2017-11-21Bibliographically approved
4. The computer deprives me of my time with patients: Swedish midwives’ experiences in antenatal care
Open this publication in new window or tab >>The computer deprives me of my time with patients: Swedish midwives’ experiences in antenatal care
(English)Article in journal (Refereed) Submitted
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-126165 (URN)
Available from: 2016-09-30 Created: 2016-09-30 Last updated: 2016-09-30

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