Evaluering av Pakkeforløp for kreft

This study has investigated patients' and healthcare providers' experiences with cancer patient pathways (CPPs). CPPs are standardised patient pathways, which describes the organisation and responsibility for diagnosis, treatment and communication with patients and relatives, as well as target times for the CPPs. The CPPs are based on national guidelines described in the action plan for cancer. The objective of CPPs is described as follows by the Norwegian Directorate of Health: "? cancer patients should experience a well-organised, comprehensive and predictable pathway without unnecessary non-medically delays in assessment, diagnostics, treatment and rehabilitation." During 2015, 28 CPPs were introduced in Norway. The main aim of the study has been to gain knowledge on how CPPs are experienced by patients and healthcare providers, and to assess whether the government's intentions with the CPPs are fulfilled. The study has focused on three main themes: 1. Patient satisfaction and user involvement in cancer care 2. Collaboration between the specialist health services and GPs and private providers within CPPs 3. Management and organisation of CPPs within hospitals, including coordination and division of labour in cancer diagnostic work up Four CPPs are have been included: breast, prostate, lung, and malign melanoma. Data comprise qualitative interviews with healthcare providers (GPs, and managers, physicians, nurses, CPP coordinators, in hospitals, as well as private specialists), and patients diagnosed with cancer. In addition, we use written material on the CPPs, primarily targeted towards patients. Summarised, the study shows that the introduction of CPPs is a conditional success. CPPs can be regarded as an organisational or logistical measure, which contributes to reducing waiting times and to creating more streamlined patient pathways. It seems that CPPs lead to less unwanted variation in time spent on diagnostics and greater predictability for patients. However, the study does not indicate that CPPs increase patient participation throughout the pathway. Looking at the service providers' more specific experiences, we found that: - The introduction of CPPs led the hospitals to make a number of internal reorganisations to remove bottlenecks that earlier had delayed diagnostic processes - CPPs put logistics and coordination on the agenda, which leads to more formalised networks and collaborative relationships across departments - Pathway coordinators are central in coordination work, but less central as the patient's contact point - CPPs strengthen and formalise interdisciplinary work through MDT meetings - The CPP target times are perceived as important by health personnel, but they can be challenging to meet - Diagnostic development gives longer lead times and makes it more difficult to meet the target times - Healthcare professionals see a need for differentiation of target times according to the severity of the disease's progress - Registration and coding of activities in the CPPs is characterised by ambiguity and different practices between hospitals - Monitoring of the course of the CPPs requires digital support, which is only available at a few hospitals - GPs are generally positive about the CPPs, but for them CPP guidelines are just one of many guidelines. Not everyone is therefore equally aware of the criteria for referring patients to a CPP - Private health providers play a role in the CPPs by relieving the public hospitals when they have capacity problems, but they are not formally integrated into the CPPs The patients' experiences can be summarized as follows: - Patients know little about the fact that they are in a CPP - Patients like that their pathway is standardised and goes quickly - Patients experience varying needs for participation, and are likewise presented with choices to varying degrees - Patients' perception that they are in a standardised process seems to imply less need to influence and deviate from the process that is planned for them from the health services - Patients have less need for general information about CPPs, and greater need for information adapted to their individual situation One possible reason why the introduction of CPP is as successful as it is, is that the CPPs manifest a development that was already underway. Many hospitals had already organised themselves in ways similar to the CPPs. The big difference is the introduction of target times, stating how long time a CPP should take. Since there was no funding when the CPPs were introduced, the hospitals must work more efficiently to keep the lead times. This means that there must be internal priorities between patients who need specialist health services. A development towards more and more timed standardised pathways, without the sector being provided with more resources, will probably be positive for those patients who are in standardised pathways, but not for those who are outside

Prosjektet har bidratt til kompetanseheving og styrket kunnskap om standardisering av helsetjenester i forskergruppa. Det har også gjort det mulig å få koplet på en PhD-student med finansering fra NTNU, og en doktorgrad blir en viktig virkning. Prosjektet har muliggjort nettverksbygging med forskningsmiljøer, nasjonalt og nordisk. Prosjektgruppa har fått kontakter i Sverige og Danmark, og har vært med på å etablere et nordisk nettverk for forskning på pakkeforløp for kreft "Nordic collaboration cancer patient pathways - RCC (cancercentrum.se)". I tillegg har prosjektet bidratt til kontakt med Kreftforeningen. Effektene av prosjektet vil være knyttet til mulige justeringer av hvordan pakkeforløp gjennomføres. Siden prosjektet har vært en forskningsbasert evaluering av pakkeforløp for kreft, er en sluttrapport som overleveres HOD en leveranse. Denne inneholder beskrivelse av sentrale resultater og implikasjoner/anbefalinger. Det blir opp til helsemyndighetene hvordan disse tas til følge.

I løpet av 2015 ble 28 pakkeforløp for kreft med tilhørende diagnoseveiledere for fastlegene og pasientinformasjon innført i Norge. Overordnet er målet med pakkeforløp for kreft å bidra til rask diagnostikk og behandling uten ikke-medisinske begrunnede forsinkelser eller ventetid for pasientene. Pakkeforløp kan ses på som en form for standardiserte pasientforløp, noe som har blitt en stadig vanligere måte å organisere behandling og oppfølging av en rekke sykdommer og tilstander på. Hovedmålet med evalueringen er å få kunnskap om hvordan pakkeforløp for kreft erfares av pasienter og tjenesteutøvere, samt å innhente kunnskap om hvorvidt pakkeforløpene oppfyller myndighetenes intensjoner med dem. Evalueringen er konsentrert om tre hovedtema: pasienttilfredshet og brukermedvirkning i kreftomsorgen, konsekvensene av pakkeforløp for samhandling og koordinering av tjenestene, og ledelse og organisering i sykehus ved innføring og gjennomføring av pakkeforløp. Datagrunnlaget i evalueringen er kvalitative intervjuer med tjenesteutøvere (fastleger, leger, sykepleiere, forløpskoordinatorer, forløpsansvarlige m.m. i sykehus, og avtalespesialister) og pasienter både i og utenfor pakkeforløp. Videre omfatter data observasjoner fra forløpskoordinatorenes arbeid og fra tverrfaglige team-møter. I tillegg vil vi benytte skriftlig materiale, primært informasjonsmateriale til pasientene, som en datakilde. Relevante teoretiske perspektiver som vil benyttes for å forstå innføring og integrering av pakkeforløp for kreft i daglig klinisk praksis hentes fra medisinsk sosiologi, organisasjonsstudier, teknologi- og vitenskapsstudier, kommunikasjonsstudier, samt fra implementeringslitteratur og tjenesteinnovasjon. Evalueringen vil avsluttes med anbefalinger for videreutvikling av pakkeforløpene og organiseringen av dem.