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Standardized cancer patient pathways: a perspective from primary healthcare in northern Sweden
Umeå University, Faculty of Medicine, Department of Nursing. Institutionen för Omvårdnad, Medicinska fakulteten, Umeå universitet.ORCID iD: 0000-0003-3503-7164
2025 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Standardiserade vårdförlopp i cancervården : ett perspektiv från primärvården i norra Sverige (Swedish)
Abstract [en]

Background: Standardized cancer patient pathways (CPP) have been adopted as a new policy in several countries, including Sweden. CPPs aim to facilitate patients' trajectories within the health system and improve the timely diagnosis and treatment of cancer. In Sweden, the adoption of CPPs entailed a decision made by decision-makers at the top of the health system; this mandated the use of CPPs by primary and secondary healthcare professionals when assessing patients and addressing their symptoms. Typically, primary healthcare (PHC) is the first point of contact for patients in Sweden seeking care for symptoms that indicate serious illnesses such as cancer. This raises the question of how the adoption of CPPs influenced PHC. Given that the goal was for the policies to work as intended, i.e., to improve early diagnosis and treatment of cancer, understanding the influence of the adoption of CPPs on PHC and its professionals is needed.

Aim: To explore how the adoption of CPPs in northern Sweden influenced PHC organizations and provisions. 

Methods: Qualitative (studies I-III) and quantitative (study IV) methods were utilized. Data were collected using individual and group interviews with participants working in the health system (I–III), and from the National Cancer Register concerning patients diagnosed with colorectal cancer before and after the introduction of CPPs. Additionally, data from electronic health record reviews, from Statistics Sweden, and regarding distance to the hospital for each patient, measured using Google Maps, were collected (IV). The individual interviews comprised participants in national, regional, and local leadership positions (I). The group interviews encompassed nurses and physicians working at PHC in one region (I–III). Interview data were analyzed using the Grounded Theory Method. The quantitative data was analyzed using comparative descriptive statistics and logistic regression (IV).

Results: The actors that adopted CPPs along the cancer trajectory and across the different healthcare levels were not equally involved in developing CPPs. Specifically, actors in PHC, which is the main entrance into care, were barely involved. This might have impacted the initial adoption and subsequent processes. The adoption of CPPs within the Swedish health system involved actors at different organizational levels. Distinct strategies were used to achieve shared goals, although this resulted in insufficient collaboration between the actors at different levels (I). The insufficient involvement of PHC resulted in unintended consequences, such as PHC organizations adjusting routines by themselves. PHC professionals combined existing work as usual with new practices following CPPs to facilitate timely diagnosis and were learning by testing the new ways of working in their practices. Moreover, they continued to manage the unequal relationship to secondary healthcare (II). Applying CPPs in patient encounters entailed challenges for professionals. When determining the seriousness of symptoms, they either relied on their professional competencies or followed symptoms described as alarming by the CPPs. Physicians perceived CPP templates to be easy to apply when their clinical cancer suspicions matched the predetermined criteria; when they did not, a workaround was needed to refer patients to secondary healthcare. Nurses and physicians described sensitively telling patients about upcoming rapid investigation procedures as challenging; for example, they did not want to frighten patients and sometimes tried to safeguard them by not providing detailed information about CPPs (III). The time to diagnosis was reduced for patients with colorectal cancer after the introduction of CPPs, particularly for those who initiated their pathway in PHC. However, for patients with right-sided colon cancer (in the ascending colon), the time to diagnosis did not improve (IV). 

Conclusion: PHC is the entrance into healthcare and is important for early cancer diagnosis. Therefore, it is essential to integrate the perspectives of PHC, e.g., nurses and physicians, when developing and adopting new policies to improve the diagnostic process. Despite the improvement of diagnostic processes that resulted from the introduction of CPPs, challenges remain when specific cancer symptoms are lacking, and clinical suspicions do not always align with the CPP templates.

Abstract [sv]

Bakgrund: Standardiserade vårdförlopp (SVF) i cancervården har införts som en ny policy i flera länder inklusive Sverige. SVF har som mål att underlätta patienters väg genom hälso- och sjukvårdssystemet och förbättra tidig diagnos och behandling av cancer. I Sverige infördes SVF efter ett beslut fattat av beslutsfattare på högsta nivå i hälso- och sjukvårdssystemet. Detta innebar att SVF användes av personalen inom primär- och sekundärvården vid kliniska bedömningar av patienter och hantering av deras symtom. I Sverige är primärvården vanligtvis den första kontakten för patienter som söker vård för symtom som kan innebära allvarlig sjukdom som cancer. Det väcker frågan om hur införandet av SVF påverkade primärvården. Eftersom målet är att policyn ska fungera som det är tänkt, dvs. att förbättra tidig diagnos och behandling av cancer, så behövs det en ökad förståelse för hur införandet av SVF påverkar primärvården och dess personal.

Syfte: Att utforska hur införandet av SVF i norra Sverige påverkade primärvårdens organisation och utförande av vård.

Metod: Kvalitativa (studie I-III) och kvantitativa (studie IV) metoder användes. Individuella intervjuer eller gruppintervjuer genomfördes med personal som arbetar i hälso-och sjukvårdssystemet (I–III). Data samlades också in från det nationella cancerregistret angående patienter som diagnostiserats med tjock- och ändtarmscancer före samt efter införandet av SVF i norra Sverige. Ytterligare data samlades in från patientjournaler, Statistiska centralbyrån och data från Google Maps avseende avstånd till sjukhuset för varje patient (IV). De individuella intervjuerna genomfördes med deltagare i ledarskapspositioner inom den nationella, regionala och lokala nivån (I). Gruppintervjuerna genomfördes med sjuksköterskor och läkare som arbetade i primärvården inom en region i norra Sverige (I–III). Intervjudata analyserades med hjälp av metoden grundad teori. Kvantitativa data analyserades med hjälp av jämförande beskrivande statistik och logistisk regression (IV).

Resultat: Aktörerna som arbetade med införandet av SVF längs hela cancervårdkedjan och genom de olika nivåerna i hälso- och sjukvårdssystemet var inte lika involverade i utvecklingen av SVF. Aktörer från primärvården, som är huvudingången till vården, upplevde att de var knappt involverade. Detta kan ha påverkat det initiala införandet av SVF och de efterföljande processerna. Införandet av SVF inom det svenska hälso- och sjukvårdssystemet involverade aktörer på olika organisatoriska nivåer. De använde separata strategier för att uppnå gemensamma mål, men samverkan var otillräcklig mellan aktörerna från de olika nivåerna (I). Den otillfredsställande involveringen av primärvården resulterade i oavsiktliga konsekvenser såsom att primärvården anpassade rutiner i sin organisation på egen hand. Primärvårdens personal kombinerade sitt vanliga arbete med det nya arbetssättet utifrån SVF för att underlätta snabbare diagnostik av cancer och lärde sig att arbeta på nya sätt genom att testa det i praktiken. De fortsatte också att hantera den befintliga ojämlika relationen till sekundärvården (II). När SVF tillämpades i vården så medförde det utmaningar för primärvårdens personal. När de bedömde allvarlighetsgraden för symtomen som patienten uppvisade förlitade de sig både på sitt professionella omdöme och följde de symtom som beskrevs som alarmerande enligt SVF. Läkare i primärvården uppfattade SVF-mallar som lätta att använda när deras kliniska misstanke om cancer stämde överens med de förutbestämda kriterierna i SVF. När så däremot inte var fallet, behövde de använda sig av alternativa vägar för att remittera patienter till sekundärvården. Både sjuksköterskor och läkare beskrev att det var utmanande att informera patienter om kommande snabba utredningar inom SVF. Till exempel ville de inte skrämma patienterna samt försökte ibland skydda dem genom att inte informera om SVF i detalj (III). Tiden till diagnos förkortades efter införandet av SVF för patienter med tjock- och ändtarmscancer, särskilt för de patienter som startade sitt vårdförlopp i primärvården. Däremot förkortades inte tiden till diagnos för patienter med högersidig tjocktarmscancer (i den uppåtgående tjocktarmen) (IV).

Konklusion: Primärvården är den huvudsakliga ingången till hälso- och sjukvården och är viktig för tidig cancerdiagnos. Därför är det av stor vikt att integrera primärvårdens perspektiv (till exempel sjuksköterskor och läkare) när en ny policy utvecklas och införs för att förbättra diagnosprocesser. Trots förbättringarna av diagnosprocesser efter införandet av SVF så kvarstår utmaningar (i primärvården) när specifika cancersymtom saknas och när kliniska misstankar om cancer inte överensstämmer med SVF-mallarna.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2025. , p. 68
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2339
Keywords [en]
adoption, cancer, organization, policy, primary healthcare, providers, standardized cancer patient pathways
Keywords [sv]
cancer, införande, organisation, policy, primärvård, vårdgivare, standardiserade vårdförlopp
National Category
Nursing Cancer and Oncology
Research subject
health services research; Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-233161ISBN: 978-91-8070-576-9 (print)ISBN: 978-91-8070-577-6 (electronic)OAI: oai:DiVA.org:umu-233161DiVA, id: diva2:1923425
Public defence
2025-01-31, Aula Biologica, Biologihuset, Umeå Universitet, Linnaeusväg 9, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2025-01-10 Created: 2024-12-23 Last updated: 2025-01-02Bibliographically approved
List of papers
1. Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system
Open this publication in new window or tab >>Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system
2023 (English)In: Health Research Policy and Systems, E-ISSN 1478-4505, Vol. 21, no 1, article id 122Article in journal (Refereed) Published
Abstract [en]

Background: Standardized cancer patient pathways as a new policy has been adopted in healthcare to improve the quality of cancer care. Within the health systems, actors at different levels manage the adoption of new policies to develop healthcare. The various actors on different levels play an important role and influence the policy adoption process. Thus, knowledge about how these actors use strategies when adopting cancer patient pathways as a policy in the health system becomes central.

Method: The study's aim was to explore how actors at different organizational levels in the health system adopted cancer patient pathways. Our overarching case was the Swedish health system at the national, regional, and local levels. Constructivist Grounded Theory Method was used to collect and analyze qualitative interviews with persons working in organizations directly involved in adopting cancer patient pathways at each level. Twelve individual and nine group interviews were conducted including 53 participants.

Results: Organizational actors at three different levels used distinct strategies during the adoption of cancer patient pathways: acting as-missionaries, fixers, and doers. Acting as missionaries consisted of preaching the idea of cancer patient pathways and framing it with a common purpose to agree upon. Acting as fixers entailed creating a space to put cancer patient pathways into practice and overcome challenges to this. Acting as doers comprised balancing breadth and speed in healthcare provision with not being involved in the development of cancer patient pathways for the local context. These strategies were not developed in isolation from the other organizational levels but rather, each level interacted with one another.

Conclusions: When adopting new policies, it is important to be aware of the different strategies and actors at various organizational levels in health systems. Even when actors on different levels developed separate strategies, if these contribute to fulfilling the four domains of inter-organizational collaboration, they can work well together to adopt new policies. Our study highlighted that the application of two domains was lacking, which meant that local actors were not sufficiently involved in collaboration, thus constricting the local use and optimization of cancer patient pathways in practice.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Collaboration, Grounded theory method, Health systems, Organizational levels, Organizational policy, Primary health care, Strategies
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-217363 (URN)10.1186/s12961-023-01073-8 (DOI)001114096200005 ()38012670 (PubMedID)2-s2.0-85177861191 (Scopus ID)
Funder
The Kempe FoundationsRegion Västerbotten, RV-731891Region Västerbotten, RV-744851Region Västerbotten, RV-855211Region Västerbotten, RV-931881Region Västerbotten, RV-939898Visare Norr, 939897Visare Norr, 929986Visare Norr, 838121Cancerforskningsfonden i Norrland, LP-18–2193
Available from: 2023-11-30 Created: 2023-11-30 Last updated: 2025-01-02Bibliographically approved
2. Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare
Open this publication in new window or tab >>Merging existing practices with new ones: the adjustment of organizational routines to using cancer patient pathways in primary healthcare
2022 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 3Article in journal (Refereed) Published
Abstract [en]

Background: The introduction of new tools can bring unintended consequences for organizational routines. Cancer Patient Pathways (CPP) were introduced into the Swedish healthcare system in 2015 to shorten time to diagnosis and treatment. Primary healthcare (PHC) plays a central role since cancer diagnosis often begins in PHC units. Our study aimed to understand how PHC units adjusted organizational routines to utilizing CPPs.

Method: Six PHC units of varied size from both urban and rural areas in northern Sweden were included. Grounded theory method was used to collect and analyse group interviews at each unit. Nine group interviews with nurses and physicians, for a total of 41 participants, were performed between March and November 2019. The interviews focused on CPPs as tools, the PHC units’ routines and providers’ experiences with using CPPs in their daily work.

Results: Our analysis captured how PHC units adjusted organizational routines to utilizing CPPs by fusing existing practices with new practices to offer better quality of care. Specifically, three overarching organizational routines within the PHC units were identified. First, Manoeuvring diverse patient needs with easier patient flow, the PHC units handled the diverse needs of the population while simultaneously drawing upon CPPs to ease the patient flow within the healthcare system. Second, (Dis) integrating internal know-how, the PHC units drew upon internal competence even when PHC know-how was not taken into account by those driving the CPP initiative. Third, Coping with unequal relationships toward secondary care, the PHC units dealt with being in an unequal position while adopting CPPs instead further decreased possibilities to influence decision-making between care-levels.

Conclusion: Adopting CPPs as a tool within PHC units brought various unintended consequences in organizational routines. Our study from northern Sweden illustrates that the PHC know-how needs to be integrated into the healthcare system to improve the use of new tools as CPP. Further, the relationships between different levels of care should be taken in account when introducing new tools for healthcare. Also, when adopting innovations, unintended consequences need to be further explored empirically in diverse healthcare contexts internationally in order to generate deeper knowledge in the research area.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2022
Keywords
Adaption, Cancer, Grounded Theory Method, Group interviews, Organizations, Primary care nurses, Primary care physicians, Routines, Standardized patient pathways, Unintended consequences
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-191123 (URN)10.1186/s12913-021-07348-6 (DOI)000737069900003 ()34974839 (PubMedID)2-s2.0-85122161997 (Scopus ID)
Funder
Region Västerbotten, RV-731891Region Västerbotten, RV-744851Region Västerbotten, RV-855211Region Västerbotten, RV-931881Region Västerbotten, RV-939898Visare Norr, 939897Visare Norr, 929986Visare Norr, 838121Cancerforskningsfonden i Norrland, LP-18-2193The Kempe Foundations
Available from: 2022-01-10 Created: 2022-01-10 Last updated: 2024-12-23Bibliographically approved
3. Primary healthcare providers’ ways of handling patients with potential cancer after the introduction of standardized cancer patient pathways in Sweden
Open this publication in new window or tab >>Primary healthcare providers’ ways of handling patients with potential cancer after the introduction of standardized cancer patient pathways in Sweden
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-233166 (URN)
Available from: 2024-12-23 Created: 2024-12-23 Last updated: 2025-01-02Bibliographically approved
4. Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden
Open this publication in new window or tab >>Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden
Show others...
2023 (English)In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 41, no 3, p. 287-296Article in journal (Refereed) Published
Abstract [en]

Objective: To compare the diagnostic interval for patients with colorectal cancer before and after the introduction of cancer patient pathways in northern Sweden.

Design: A retrospective study comparing two cohorts (2012 and 2018) of patients diagnosed with colorectal cancer before and after the introduction of cancer patient pathways in 2016.

Setting: Three counties in northern Sweden with large sparsely populated areas and some cities (637143 residents ∼5.1 residents/km2).

Subjects: Patients were included from the Swedish Cancer Register. Electronic health records reviews were performed and linked to socioeconomic data from Statistics Sweden.

Main outcome measures: Differences in the diagnostic intervals, the patient intervals and the characteristics associated with the longest diagnostic intervals and investigations starting at the emergency department.

Results: The two cohorts included 411 patients in 2012 and 445 patients in 2018. The median diagnostic interval was reduced from 47 days (IQI 18–99) to 29 days (IQI 9–74) (p < 0.001) after the introduction of cancer patient pathways in general. Though for the cases of cancer in the right-side (ascended) colon, the reduction of the diagnostic interval was not observed and it remained associated with investigations starting at the emergency department.

Conclusion: Our results indicate that cancer patient pathways contributed to an improvement in the diagnostic interval for patients with colorectal cancer in general, yet not for patients with cancer in the right-side colon.

Implication: In general, cancer patient pathways seem to reduce the diagnostic interval for colorectal cancer but it is not a sufficient solution for all colorectal cancer localisations.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
cancer patient pathways, Colorectal cancer, diagnostic interval, primary healthcare, socioeconomic factors, symptoms, time to diagnosis
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:umu:diva-212509 (URN)10.1080/02813432.2023.2234003 (DOI)001025227600001 ()37450480 (PubMedID)2-s2.0-85165303497 (Scopus ID)
Available from: 2023-08-01 Created: 2023-08-01 Last updated: 2024-12-23Bibliographically approved

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