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    Improving the use of research evidence in guideline development: 8. Synthesis and presentation of evidence.

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    BACKGROUND: The World Health Organization (WHO), like many other organisations around the world, has recognised the need to use more rigorous processes to ensure that health care recommendations are informed by the best available research evidence. This is the eighth of a series of 16 reviews that have been prepared as background for advice from the WHO Advisory Committee on Health Research to WHO on how to achieve this. OBJECTIVES: We reviewed the literature on the synthesis and presentation of research evidence, focusing on four key questions. METHODS: We searched PubMed and three databases of methodological studies for existing systematic reviews and relevant methodological research. We did not conduct systematic reviews ourselves. Our conclusions are based on the available evidence, consideration of what WHO and other organisations are doing and logical arguments. KEY QUESTIONS AND ANSWERS: We found two reviews of instruments for critically appraising systematic reviews, several studies of the importance of using extensive searches for reviews and determining when it is important to update reviews, and consensus statements about the reporting of reviews that informed our answers to the following questions.How should existing systematic reviews be critically appraised? Because preparing systematic reviews can take over a year and require capacity and resources, existing reviews should be used when possible and updated, if needed. Standard criteria, such as A MeaSurement Tool to Assess Reviews (AMSTAR), should be used to critically appraise existing systematic reviews, together with an assessment of the relevance of the review to the questions being asked. When and how should WHO undertake or commission new reviews? Consideration should be given to undertaking or commissioning a new review whenever a relevant, up-to-date review of good quality is not available. When time or resources are limited it may be necessary to undertake rapid assessments. The methods that are used to do these assessments should be reported, including important limitations and uncertainties and explicit consideration of the need and urgency of undertaking a full systematic review. Because WHO has limited capacity for undertaking systematic reviews, reviews will often need to be commissioned when a new review is needed. Consideration should be given to establishing collaborating centres to undertake or support this work, similar to what some national organisations have done. How should the findings of systematic reviews be summarised and presented to committees responsible for making recommendations? Concise summaries (evidence tables) of the best available evidence for each important outcome, including benefits, harms and costs, should be presented to the groups responsible for making recommendations. These should include an assessment of the quality of the evidence and a summary of the findings for each outcome. The full systematic reviews, on which the summaries are based, should also be available to both those making recommendations and users of the recommendations. What additional information is needed to inform recommendations and how should this information be synthesised with information about effects and presented to committees? Additional information that is needed to inform recommendations includes factors that might modify the expected effects, need (prevalence, baseline risk or status), values (the relative importance of key outcomes), costs and the availability of resources. Any assumptions that are made about values or other factors that may vary from setting to setting should be made explicit. For global guidelines that are intended to inform decisions in different settings, consideration should be given to using a template to assist the synthesis of information specific to a setting with the global evidence of the effects of the relevant interventions

    Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement.

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    BACKGROUND: The World Health Organization (WHO), like many other organisations around the world, has recognised the need to use more rigorous processes to ensure that health care recommendations are informed by the best available research evidence. This is the 10th of a series of 16 reviews that have been prepared as background for advice from the WHO Advisory Committee on Health Research to WHO on how to achieve this. OBJECTIVES: We reviewed the literature on integrating values and consumers in guideline development. METHODS: We searched PubMed and three databases of methodological studies for existing systematic reviews and relevant methodological research. We reviewed the titles of all citations and retrieved abstracts and full text articles if the citations appeared relevant to the topic. We checked the reference lists of articles relevant to the questions and used snowballing as a technique to obtain additional information. We did not conduct a full systematic review ourselves. Our conclusions based on the available evidence, consideration of what WHO and other organisations are doing and logical arguments. KEY QUESTIONS AND ANSWERS: We did not find a systematic review of methods for integrating values in guidelines, but we found several systematic reviews that dealt with related topics.Whose values should WHO use when making recommendations? Values, the relative importance or worth of a state or consequences of a decision (outcomes relating to benefits, harms, burden and costs), play a role in every recommendation. Ethical considerations, concepts that determine what is right, also play a role. The values used in making recommendations should reflect those of the people affected. Judgements should be explicit and should be informed by input from those affected (including citizens, patients, clinicians and policy makers). When differences in values may lead to different decisions or there is uncertainty about values, this should also be explicit. If differences in values are likely to affect a decision, such that people in different setting would likely make different choices about interventions or actions based on differences in their values, global recommendations should be explicit in terms of which values were applied and allow for adaptation after incorporating local values.How should WHO ensure that appropriate values are integrated in recommendations? All WHO guideline groups should uniformly apply explicit, transparent and clearly described methods for integrating values. WHO should consider involving relevant stakeholders if this is feasible and efficient. WHO should develop a checklist for guidelines panels to help them to ensure that ethical considerations relevant to recommendations are addressed explicitly and transparently.How should users and consumers be involved in generating recommendations? Including consumers in groups that are making global recommendations presents major challenges with respect to the impossibility of including a representative spectrum of consumers from a variety of cultures and settings. Nonetheless, consideration should be given to including consumers in groups who are able to challenge assumptions that are made about the values used for making recommendations, rather than represent the values of consumers around the world. WHO should establish a network to facilitate involvement of users. Draft recommendations should be reviewed by consumers, who should be asked explicitly to consider the values that were used.How should values be presented in recommendations? Recommendations should include a description of how decisions were made about the relative importance of the consequences (benefits, harms and costs) of a decision. Values that influence recommendations should be reported along with the research evidence underlying recommendations. When differences in values would lead to different decisions or there is important uncertainty about values that are critical to a decision, this should be flagged and reflected in the strength of the recommendation. Adaptable guideline templates that allow for integration of different values should be developed and used when differences in values are likely to be critical to a decision

    Helsepersonellets møte med den gamle.

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    Jeg vil nytte livet

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    Videreutvikling av spørreskjema for å måle pasienterfaringer blant inneliggende somatiske pasienter - Dokumentasjonsrapport

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    Bakgrunn\ud Nasjonalt kunnskapssenter for helsetjenesten gjennomførte en nasjonal spørreskjemaundersøkelse blant inneliggende somatiske pasienter høsten 2006. Det ble gjennomført en pilotundersøkelse for å videreutvikle spørreskjemaet som ble benyttet i forrige nasjonale undersøkelse i 2003.\ud \ud Fempunkt versus tipunkt\ud Basert på resultatene fra pilotundersøkelsen konkluderer vi med at spørreskjemaet med fempunkts svarskala er å foretrekke. Særlig tipunktsskalaens tendens til å trekke svarene mot ytterpunktene samt at fempunktsskalaen jevnt over er mer normalfordelt er tungtveiende grunner til dette. I tillegg har flere pasienter vi intervjuet gitt uttrykk for at fempunktsskalaen er lettere å forholde seg til, noe som er et viktig aspekt å ta med seg. Dette har også blitt fremholdt i forskningslitteratur på området.\ud \ud En styrke ved piloten er at vi gjennomførte den som et randomisert studie, det vil si at det er ingen systematiske forskjeller mellom utvalgene. Forskjeller i svar kan derfor med rimelighet tilskrives forskjeller i spørreskjemaet og ikke forskjeller mellom gruppene som har svart. Utvalgene er like både med hensyn til alder og utdanning, variabler som har blitt funnet å være relatert til pasienterfaringer.\ud \ud Nordisk pasienterfaringsinstrument\ud Indikatorene som er utviklet for å måle pasienterfaringer i flere nordiske land synes å fungere bra og vi ser frem til å få prøvd disse ytterligere i senere undersøkelser. Det var lite manglende svar og tilnærmet normalfordelt svardistribusjon mellom svarkategoriene på alle spørsmålene. Spørsmålene vil inkluderes i fremtidige spørreskjema for inneliggende somatikk, første gang i den nasjonale undersøkelsen høsten 2006.\ud \ud Livskvalitet\ud Livskvalitet representerer et potensielt viktig resultatmål. Vi spurte pasientene om å vurdere sin nåværende tilstand sammenlignet med tilstanden på et tidligere tidspunkt. Dette er mer komplisert enn bare å be pasientene rapportere nå-situasjonen og vi var usikre på om dette var praktisk gjennomførbart i en pasienterfaringsundersøkelse. Vi fikk positive tilbakemeldinger på dette gjennom pasientintervjuene, ingen av pasientene virket å ha problemer med å forstå spørsmålene, ei heller huske tilbake til hvordan situasjonen deres var før sykehusoppholdet. Ser vi på manglende svar har vi heller ingen indikasjoner på at pasienter unnlot å svare på disse i større grad enn andre spørsmål. Vi konkluderer derfor med at spørsmål i den formen vi har introdusert i pilotundersøkelsen kan benyttes og videreutvikles i fremtidige undersøkelser. Siden slike spørsmål lettere kan oppleves som irrelevante for enkelte pasientgrupper er det imidlertid svært viktig at vi er påpasselige med hvilke spørsmål som inkluderes og blant hvilke pasientgrupper de distribueres.\ud \ud Spørsmålene om livskvalitet vil inkluderes i spørreskjemaet for 2006 for testing og videre vurdering i etterkant av dette.\ud \ud Sammenliknbarhet over tid\ud En viktig problemstilling som dukker opp ved endring av spørreskjemaet, er hvordan vi skal opprettholde tidsserier, altså hvordan resultatene kan sammenliknes med tidligere spørreskjemaer. Vi vil løse dette gjennom å trekke ut et ekstra utvalg på 2000 pasienter som vil få et tilpasset spørreskjema som inneholder både den nye og den gamle versjonen. Basert på resultatene av disse kan vi konstruere en modell for å estimere skårer i det gamle spørreskjemaet ut fra resultater i det nye. Denne modellen kan da brukes til å sammenline resultater fra den nasjonale undersøkelsen i 2006 med tidligere undersøkelser

    Pårørendes erfaringer med somatiske barneavdelinger – Hovedresultater fra nasjonal undersøkelse

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    NORSK SAMMENDRAG: Høsten 2005 gjennomførte Nasjonalt kunnskapssenter for helsetjenesten en spørreundersøkelse blant pårørende ved de 20 somatiske barneavdelingene i Norge.\ud \ud Totalt har 3308 pårørende besvart ulike spørsmål om sine erfaringer med barneavdelingen, og undersøkelsen har en svarprosent på 54. Undersøkelsen har tilfredsstillende representativitet. Det er utarbeidet tre rapporter fra undersøkelsen: Hovedresultater, metodedokumentasjon og institusjonsresultater.\ud \ud Barneavdelingene får generelt gode tilbakemeldinger fra de pårørende, og gjennomsnittsresultatene på hovedområder av pårørendeerfaringer ligger mellom 63 og 73, på en skala fra 0 til 100 der 100 er best. De pårørende gir best tilbakemelding på standarden ved barneavdelingene, mens organisering og pleietjenestene får dårligst tilbakemelding. Det området som får dårligst resultat i undersøkelsen, handler om i hvilken grad foreldrene opplevde at de fikk informasjon om hva som var deres oppgaver som pårørende under sykehusoppholdet. De pårørende har høy tillit til legenes faglige dyktighet og er godt fornøyde med den pleie og omsorg pleiepersonalet har gitt barnet.\ud \ud Med unntak av området standard, er resultatene like på tvers av helseregionene. Det er små forskjeller og få signifikante forskjeller mellom barneavdelingenes resultater.\ud \ud Analysene viser at svarers kjønn, alder, morsmål og utdanningsnivå, barnets alder og type behandling i liten grad forklarer variasjoner i de pårørendes tilfredshet med barneavdelinger. Noen forhold knyttet til behandlingen ved sykehuset, viser seg imidlertid å ha større sammenheng med foreldrenes opplevelse av barneavdelingene: Foreldre som mener at personalet ikke gjorde nok for å lindre barnets smerter, og foreldre som mener at deres barn ble feilbehandlet ved sykehuset, er mindre fornøyde enn foreldre som ikke har disse erfaringene.\ud \ud Foreldrenes vurdering av barnets nåværende helsetilstand har tilsvarende sammenheng; foreldre som rapporterer at barnet har god helse er mer fornøyde enn foreldre som vurderer barnets helsetilstand som dårlig.ENGELISH SUMMARY: During the autumn of 2005 the Norwegian Knowledge Centre for the Health Services conducted a survey of parents (or next of kin) whose children received care at 20 pediatric departments across Norway. In total 3,308 parents answered a questionnaire which included a number of items concerning their experiences with the pediatric department where their child had stayed. The generalisability of the sample is regarded as satisfactory. Three reports have been produced. The first gives the main results, the second gives an account of the methods used and the third report gives the results for each of the participating hospitals.\ud \ud In general the pediatric departments receive positive responses from the parents.\ud \ud The mean results vary from 63 to 73 on a 0-100 scale where 100 represents the best possible experiences. The most positive experiences relate to the hospital environment while organisation and nursing services receive the least positive responses. The most negative single aspect concerns the quality of the information given about the next of kin’s responsibilities during the hospital stay. Parents rate doctor competence highly together with the treatment and care provided by the hospital.\ud \ud There is limited variation across different health regions in Norway, except the parents’ experiences of the hospital environment. There are only minor differences between the participating pediatric departments.\ud \ud Our analyses show that some demographic variables explain a small amount of the variance in parents’ experiences. The results show that respondent age, gender, native language, education together with the children’s age and treatment received explain a small amount of parent experiences. Three variables explained greater variation: First, parent perception of pain control; second, parent perception of bad medical practice; and third, parents who perceived their child as having better health reported better experiences

    Congenital hypothyroidism: no adverse effects of high dose thyroxine treatment on adult memory, attention, and behaviour.

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    BACKGROUND: In congenital hypothyroidism (CH) it has been questioned whether high dose thyroxine replacement therapy has detrimental effects on memory, attention, and behaviour. AIMS: To describe memory, attention, and behaviour problems in young adults with CH, and to study possible negative effects of high dose thyroxine replacement therapy. METHODS: A cohort based follow up study of 49 young adults (mean age 20 years) with early treated CH, and sibling controls (n = 41). RESULTS: Controlled for age and sex, the CH group attained significantly lower scores than sibling controls on some tests of memory (Wechsler Logical Memory part II: 12.9 versus 17.8; difference 5.2, 95% CI 3.6 to 6.8) and attention (Wechsler Freedom From Distractibility factor: 95.6 versus 104.8; difference 9.9, 95% CI 6.4 to 13.4). They rated themselves with more behaviour problems than did sibling controls (52.7 versus 44.7; difference -7.6, 95% CI -11.2 to -4.0) on the Achenbach Self Report. A high thyroxine starting dose, high serum thyroxine treatment levels during the first six childhood years, and high levels at assessment had no adverse effects on outcome measures at age 20. On the contrary, the results suggest better outcome with higher childhood treatment levels. CONCLUSIONS: Long term outcome revealed deficits in some aspects of memory, attention, and behaviour in young adults with CH relative to sibling controls. No adverse effects of high dose thyroxine therapy were found on measures of memory, attention, and behaviour problems

    Pasienterfaringer ved poliklinikker for voksne i det psykiske helsevernet i Norge – Metodedokumentasjon

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    Nasjonalt kunnskapssenter for helsetjenesten har i 2004 gjennomført en brukererfaringsundersøkelse ved poliklinikker for voksne i det psykiske helsevernet i Norge. Undersøkelsen er gjennomført på oppdrag fra de regionale helseforetakene. Resultatene fra undersøkelsen publiseres i egne resultatrapporter (Dahle 2004; Saunes 2004). I denne rapporten beskrives metoden som er benyttet i undersøkelsen.\ud \ud Målgruppene for PasOpp spenner fra befolkning/brukere til politisk ledelse, helseforvaltningen (inkludert eiere), virksomhetsledere og ansatte i virksomhetene. For de fleste bruksområder er det behov for generaliserbare data, for eksempel ifht. styrings- og ledelsesformål og kvalitetsforbedring; det er nødvendig å vite om svarene fra pasientene gjelder kun utvalget i undersøkelsen, eller om de kan sies å (statistisk) representere pasientpopulasjonen som helhet. Spørsmål om representativitet og generaliserbarhet er sentrale komponenter i kvantitativ metode, og dette er hovedmetode i poliklinikkundersøkelsen. I forkant av undersøkelsen har det imidlertid vært nødvendig å supplere med kvalitative metoder, spesielt når vi har utviklet og testet spørreskjemaet.\ud \ud Formålet med denne rapporten er tredelt:\ud \ud - Å beskrive innsamlingsmetoden, utvalget og innsamlingsprosessen i poliklinikkundersøkelsen\ud - Å dokumentere utviklingen og valideringen av spørreskjemaet vi har benyttet\ud - Å beskrive de statistiske teknikkene/begrepene som er benyttet i resultatrapporten

    Systematic review to determine whether participation in a trial influences outcome.

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    OBJECTIVE: To systematically compare the outcomes of participants in randomised controlled trials (RCTs) with those in comparable non-participants who received the same or similar treatment. DATA SOURCES: Bibliographic databases, reference lists from eligible articles, medical journals, and study authors. REVIEW METHODS: RCTs and cohort studies that evaluated the clinical outcomes of participants in RCTs and comparable non-participants who received the same or similar treatment. RESULTS: Five RCTs (six comparisons) and 50 cohort studies (85 comparisons) provided data on 31,140 patients treated in RCTs and 20,380 comparable patients treated outside RCTs. In the five RCTs, in which patients were given the option of participating or not, the comparisons provided limited information because of small sample sizes (a total of 412 patients) and the nature of the questions considered. 73 dichotomous outcomes were compared, of which 59 reported no statistically significant differences. For patients treated within RCTs, 10 comparisons reported significantly better outcomes and four reported significantly worse outcomes. Significantly heterogeneity was found (I2 = 89%) among the comparisons of 73 dichotomous outcomes; none of our a priori explanatory factors helped explain this heterogeneity. The 18 comparisons of continuous outcomes showed no significant differences in heterogeneity (I2 = 0%). The overall pooled estimate for continuous outcomes of the effect of participating in an RCT was not significant (standardised mean difference 0.01, 95% confidence interval -0.10 to 0.12). CONCLUSION: No strong evidence was found of a harmful or beneficial effect of participating in RCTs compared with receiving the same or similar treatment outside such trials

    Ulike fylke, ulike tannhelsetenestetilbod? Tilbodet frå Den offentlege tannhelsetenesta til dei prioriterte gruppene, oversyn over bemanningssituasjonen og oppsummering av rapporteringa frå Helsetilsynet i fylka.

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    NORSK SAMMENDRAG: Tilbodet frå Den offentlege tannhelsetenesta til dei prioriterte gruppene, oversyn over bemanningssituasjonen og oppsummering av rapporteringa frå Helsetilsynet i fylka. \ud \ud Denne rapporten er oppsummering av den tredje rapporten som Statens helsetilsyn gir ut om tannhelsetenesta i Noreg. Rapporten fokuserer hovudsakleg på omfanget av Den offentlege tannhelsetenesta til dei gruppene som tannhelsetenestelova krev at fylkeskommunen skal prioritere. Dei to tidlegare rapportane viste at det var betydelege forskjellar mellom fylka, og det gav grunn til uro for at dei prioriterte gruppene i fleire fylke ikkje fekk det tilbodet dei har krav på. Offentleg statistikk om tannhelsetenesta viser at det framleis er store forskjellar mellom fylka:\ud Delen av eldre, langtidssjuke og uføre i institusjon som er under tilsyn av Den offentlege tannhelsetenesta, er 55 prosent i Aust-Agder og 99 prosent i Oppland. \ud Ein offentleg tannlege eller tannpleiar i Vest-Agder har i gjennomsnitt om lag 1400 pasientar under tilsyn. Ein offentleg tannlege eller tannpleiar i Finnmark har i gjennomsnitt om lag 550 pasientar under tilsyn. \ud Bemanningsnivået i tannhelsetenesta i Nord-Trøndelag, Oppland og Akershus er nesten likt. Delen av den vaksne befolkninga som er under tilsyn av Den offentlege tannhelsetenesta, er 14,6 prosent i Nord-Trøndelag, 6,5 prosent i Oppland og 0,3 prosent i Akershus.\ud Gir statistikken eit skeivt bilete av verkelegheita på grunn av feilkjelder eller ulike tolkingar av omgrepa?\ud \ud Kan geografi ske, administrative, økonomiske, helsemessige, sosiale eller kulturelle forhold forklare forskjellane?\ud \ud Oppfyller fylkeskommunen i kvart fylke den plikta han har etter tannhelsetenestelova, overfor alle personar i dei prioriterte gruppene, eller er tilbodet ulikt – avhengig av kvar ein bur i landet?\ud \ud Dette er spørsmål som Statens helsetilsyn ønskjer å greie ut om og drøfte i denne rapporten.SUMMARY IN ENGLISH: Provision of dental services to the priority groups, dental manpower situation, and reports on dental services from the Norwegian Board of Health in the counties \ud Short summary of Report from the Norwegian Board of Health 8/2005\ud \ud According to the Dental Health Services Act, there are five priority groups that the county authorities have a statutory duty to provide dental services for. These are:\ud Group A: children and young people aged 0-18 \ud Group B: mentally handicapped adults \ud Group C: elderly people, people with long-standing illness and people with a disability pension who are either living in an institution or receiving home nursing care \ud Group D: young people aged 19 20 \ud Group E: other groups that the county authorities have decided to give priority to.\ud The county authorities can also provide dental services for adults, who pay for their treatment, if the needs of people in the priority groups have been met. \ud \ud This report presents a description of provision of public dental services to the priority groups and the dental manpower situation in the counties. It is the third in a series of reports on dental services published by the Norwegian Board of Health. The two previous reports (Reports 5/2004 and 14/2004) showed that there were great differences between the counties in provision of dental services. This raised concern that people in the priority groups in several counties were not receiving the dental services that they have a statutory right to receive. The latest public statistics on dental services (source: Statistics Norway), presented in this report, show that there are still great differences between the counties. For example:\ud The proportion of people in group c who are under supervision of the public dental services is 55 per cent in the county of Aust-Agder and 99 per cent in the county of Oppland \ud A public dental officer or dental hygienist in the county of Vest-Agder has, on average, 1 400 patients under supervision. A public dental officer or dental hygienist in the county of Finnmark has, on average, 550 patients under supervision. \ud The dental manpower situation in the counties of Nord-Trøndelag, Oppland and Akershus is very similar. The proportion of adults under supervision of the public dental services is 14.6 per cent in Nord-Trøndelag, 6.5 per cent in Oppland and 0.3 per cent in Akershus. \ud There were no vacancies for public dental officers in Oslo in 2004. The number of people in the priority groups per man-year for public dental officers was 2 200. There were 25 vacancies for public dental officers in Nordland in 2004. The number of people in the priority groups per man-year was 900. \ud The population density in the counties of Oppland and Troms is the same. Net operational expenses per person under supervision of the public dental services is approximately NOK 1 000 in Oppland and NOK 2 000 in Troms.\ud Do the statistics give a misleading picture of the situation, as a result of statistical errors or different interpretation of concepts?\ud \ud Can differences in service provision be explained by geographical, administrative, economic, health, social or cultural differences between the counties?\ud \ud Do the county authorities fullfil their statutory duty to all people in the priority groups, or does service provision vary according to where one lives?\ud \ud These are issues that the Norwegian Board of Health is concerned about, and that are discussed in this report

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