HELSEFORSKNING-HELSEFORSKNING

It is common to seek healthcare for chronic fatigue. Patients with extensive loss of function and additional symptoms with of unknown cause are diagnosed with chronic fatigue syndrome (CFS)/ myalgic encephalopathy (ME). Young patients up to age 18, are examined in the specialist healthcare. General practitioners may need to refer patients to the specialist healthcare to exclude other cause or for interdisciplinary examinations in complex cases. Lack of curative treatment may cause a long term need of services from the municipality, school or the Norwegian labour and welfare service (NAV). Many patients have expressed that they meet a lack of understanding, trust and delayed help. Therefore, the healthcare services, schools and NAV need more competence about long-term fatigue and CFS/ME. This innovation project will develop a strategy for the collaboration between the patient and services involved through collaborative consultations over video. One aim is to increase the service providers' competence about chronic fatigue and CFS/ME. Another aim is to increase the experience of a coherent service for patients with chronic fatigue and CFS/ME. A workshop was held on January 25, 2024, where 54 participants from 14 different organizations and with 11 different types of professions or backgrounds contributed input through discussions and the use of an electronic response system (Mentimeter) to design collaboration meetings for adults. The input showed strong agreement on the benefits of standardized collaboration procedures, but also the importance of balancing this against resource use and keeping patients’ individual needs at the center. A guide for conducting collaboration meetings after the evaluation for patients at the Department of Pain and Complex Disorders, St. Olavs hospital, was developed, and meetings have been held for approximately 50 patients. These patients have been invited to participate in in-depth interviews about their experiences, and 5 interviews have been conducted so far. Data collection in the work on standardizing collaboration for youth aged 16-18 with chronic fatigue and CFS/ME began with a focus group interview with 8 representatives, including all professions in the Composite Team at the Children’s and Youth Clinic (BUK), St. Olavs hospital, who is responsible for the evaluation of the patients and the collaboration with external professionals. Data from the focus group interview was used to prepare presentations and group tasks for a workshop held on April 9, 2024, with 43 participants from 11 different organizations, where 11 different professions contributed input through discussions and the use of an electronic response system (Mentimeter). Input from the workshop has been discussed in the project group and with the Composite Team at BUK and has been used in the development of a collaboration strategy. Internal documents used by the Composite Team in collaboration around patients have been reviewed and revised. Additionally, an information letter is being prepared to be distributed to relevant collaboration actors around the youth. This aims to facilitate collaboration as early as possible, which is a desire from both school staff and local health actors. Early collaboration can contribute to a common understanding of the youth’s challenges and needs. Collaboration meetings summarizing findings and transferring information to the local support system for this patient group are tailored individually and may include digital, hybrid, and physical meetings.The strategy of early information dissemination to relevant actors around the youth, combined with a collaboration meeting at the end of the evaluation, will be tested on 10-15 patients. Experiences with the collaboration strategy will be gathered through interviews with actors involved in the collaboration. To collaborate with schools and NAV, it is necessary to obtain consent from the patients themselves. A digital consent form is proposed and being developed, which is intended to be integrated into the HelsaMi app, the patient’s communication portal for health services in Mid-Norway. Furthermore, an electronic quality register has been developed in collaboration with HEMIT and Oslo University Hospital, and it is planned to be launched for use during the autumn. It will collect data on assessments, procedures, findings, and diagnoses, as well as patient-reported data on health, function, and experiences with the health service. It will be recorded when a collaboration meeting is conducted, and patients will then receive an electronic form with questions about their experiences with the specific meeting. Experiences from conducted collaboration meetings will be presented at new workshops for both adults and youth in 2025 and will form the basis for any changes. Furthermore, data will be collected using the register throughout 2025 and 2026 for further evaluation of the collaboration procedures.

Langvarig utmattelse er en hyppig årsake til å søke helsehjelp og kan medføre et alvorlig funksjonstap. CFS/ME er en diagnose som stilles ved svært omfattende funksjonstap og tilleggssymptomer etter at andre årsaker er utelukket. Vurdering av diagnosen gjøres ofte i spesialisthelsetjenesten, men det finnes ikke noen definitiv behandling, og mange pasienter har behov for koordinerte tjenester i kommunen og fra skole eller NAV over lang tid. Mange pasienter angir mangel på forståelse, tillit og rask nok hjelp, og det er et behov for å øke kompetansen for langvarig utmattelse og CFS/ME i de ulike delene av helsetjenesten, velferdstjenesten og skole. I dette prosjektet vil vi utvikle en ny måte for samhandling med målsetningen om å øke ulike aktørers kompetanse, og pasienters opplevelse av sammenheng i den komplekse helsetjeneste for pasienter med langvarig utmattelse uten kjent årsak og for pasienter med CFS/ME. Innovasjonen er at spesialisthelsetjenesten organiserer samhandlingskonsultasjoner før, under og etter utredning for ungdom mellom 16 og 18 år og etter utredning for voksne. I samhandlingskonsultasjonene vil pasienten få anledning til å møte spesialister i tillegg til fastlege og eventuelt andre aktører, samtidig over video. For å ivareta de ulike perspektivene og god kommunikasjon, vil vi sette ned et bredt sammensatt arbeidsutvalg som skal bidra til å utforme struktur og innhold i samhandlingskonsultasjonene, blant annet gjennom heldags workshoper. Samhandlingskonsultasjoner blir videre testet ut og pasienters erfaringer undersøkes gjennom kvalitative intervju. I tillegg vil vi opprette et elektronisk register der både pasientrapporterte symptomer og funksjon, samt erfaringer med tjenesten inngår. I registeret samles data på diagnoser, tidsbruk, deltakelse og prosedyrer som er gjennomført ved utredningen i spesialisthelsetjenesten. Erfaringene vil deretter drøftes i arbeidsutvalget som vil utforme en modifisert nasjonal eller regional standard.