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Boks, M., Lilja, M., Lindam, A., Widerström, M., Persson, A., Karling, P. & Sjöström, M. (2025). Long-term symptoms in children after a Cryptosporidium hominis outbreak in Sweden: a 10-year follow-up. Parasitology Research, 124(1), Article ID 13.
Open this publication in new window or tab >>Long-term symptoms in children after a Cryptosporidium hominis outbreak in Sweden: a 10-year follow-up
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2025 (English)In: Parasitology Research, ISSN 0932-0113, E-ISSN 1432-1955, Vol. 124, no 1, article id 13Article in journal (Refereed) Published
Abstract [en]

In 2010, a Cryptosporidium hominis outbreak resulted in 27,000 clinical cryptosporidiosis cases (45% of the population) in Östersund, Sweden. Long-term abdominal and joint symptoms are common following cryptosporidiosis in adults, and it can affect the development of children in low-income countries. We investigated the potential consequences for children in a high-income setting. In 2011, we prospectively surveyed 600 randomly selected children aged 0-5 years from Östersund. Cases were defined as respondents reporting new episodes of diarrhoea during the outbreak. After 10 years, respondents received a follow-up questionnaire about long-term symptoms (n = 423). We used X2 and Mann-Whitney U tests to assess between-group differences in demographics and the mean number of symptoms. Logistic regressions adjusted for sex, age, and prior issues with loose stools were used to examine associations between case status and symptoms reported at follow-up. We retrieved data on healthcare visits from patient records. In total, 121 cases and 174 non-cases responded to the follow-up questionnaire (69.7%). Cases reported 1.74 (median 1.00, range 0-14) symptoms and non-cases 1.37 (median 0.00, range 0-11) symptoms (p = 0.029). Cases were more likely to report joint symptoms (aOR 4.0, CI 1.3-12.0) and fatigue (aOR 1.9, CI 1.1-3.4), but numbers were generally low. We found no between-group differences in abdominal symptoms, healthcare utilization, or disease diagnoses. Children aged 0-5 years from high-income countries may experience long-term symptoms after cryptosporidiosis, but may not be affected to the same extent as adults or their peers living in low-income countries.

Place, publisher, year, edition, pages
Springer Nature, 2025
Keywords
Cryptosporidium, Disease outbreaks, Paediatric infections, Post-infectious symptoms, Sequelae
National Category
Epidemiology Public Health, Global Health and Social Medicine Infectious Medicine
Identifiers
urn:nbn:se:umu:diva-235372 (URN)10.1007/s00436-025-08455-7 (DOI)001405610700001 ()39862254 (PubMedID)2-s2.0-85216996624 (Scopus ID)
Funder
Region Jämtland Härjedalen, JLL-939404Region Jämtland Härjedalen, JLL-965542Region Jämtland Härjedalen, JLL-967794Region Jämtland Härjedalen, JLL-978075Region Jämtland Härjedalen, JLL-980156Region Jämtland Härjedalen, JLL-990885Region Jämtland Härjedalen, JLL-993985Visare Norr, VISARENORR967799Visare Norr, VISARENORR993655
Available from: 2025-02-24 Created: 2025-02-24 Last updated: 2025-02-24Bibliographically approved
Jutterström, L., Stenlund, A.-L., Otten, J., Lilja, M. & Hellström Ängerud, K. (2024). Awareness of cardiovascular risk among persons with type 2 diabetes: a qualitative study. International Journal of Qualitative Studies on Health and Well-being, 19(1), Article ID 2294512.
Open this publication in new window or tab >>Awareness of cardiovascular risk among persons with type 2 diabetes: a qualitative study
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2024 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 19, no 1, article id 2294512Article in journal (Refereed) Published
Abstract [en]

PURPOSE: To describe the process of becoming aware of and acting on personal cardiovascular (CVD) risk in type 2 diabetes (T2D).

METHOD: A purposive sample of 14 persons living with T2D participated in semi-structured, open-ended, in-dept interviews. The interviews were analysed with grounded theory.

RESULT: The analysis identified the core category "Balancing emotions, integrating knowledge and understanding to achieve risk awareness and act on it." Five categories describe the movement from not being aware of the risk of cardiovascular disease (CVD) to becoming aware of this risk and taking action to reduce it. Persons with T2D need to transform their knowledge and experience of CVD risk and incorporate it in their individual situations. Emotional and existential experiences of CVD risk can lead to awareness about the severity of the condition and contribute to increased motivation for self-management. However, an overly high emotional response can be overwhelming and may result in insufficient self-management.

CONCLUSION: Persons with T2D seemed not to fully grasp their increased risk of CVD or recognize that self-management activities were aimed at reducing this risk. However, their awareness of CVD risk gradually increased as they came to understand the severity of T2D and became more emotionally and existentially engaged.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Cardiovascular risk, patients’ experiences, primary health care, qualitative, risk awareness, type 2 diabetes
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-218860 (URN)10.1080/17482631.2023.2294512 (DOI)001127543500001 ()38112175 (PubMedID)2-s2.0-85180420063 (Scopus ID)
Funder
Umeå UniversityRegion VästerbottenVisare NorrDiabetesfonden
Available from: 2024-01-05 Created: 2024-01-05 Last updated: 2024-01-05Bibliographically approved
Fureman, A.-L., Bladh, M., Carlsson, A., Forsander, G., Lilja, M., Ludvigsson, J., . . . Lind, T. (2024). Partial clinical remission of type 1 diabetes in Swedish children: a longitudinal study from the Swedish national quality register (SWEDIABKIDS) and the better diabetes diagnosis (BDD) study. Diabetes Technology & Therapeutics, 26(11), 851-861
Open this publication in new window or tab >>Partial clinical remission of type 1 diabetes in Swedish children: a longitudinal study from the Swedish national quality register (SWEDIABKIDS) and the better diabetes diagnosis (BDD) study
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2024 (English)In: Diabetes Technology & Therapeutics, ISSN 1520-9156, E-ISSN 1557-8593, Vol. 26, no 11, p. 851-861Article in journal (Refereed) Published
Abstract [en]

Aims/Hypotheses: To investigate the frequency and characteristics of partial remission in Swedish children with type 1 diabetes and whether the insulin delivery method, that is, continuous subcutaneous insulin infusion (CSII) or multiple daily injections (MDIs), affects incidence and duration of this period, 2007-2011. Factors that increase the proportion of subjects who enter partial remission and extend this period can improve long-term metabolic control and reduce the risk of severe hypoglycemia, improve quality of life, and, in the long run, reduce late complications.

Methods: Longitudinal data from 2007 to 2020 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with all reported newly diagnosed children. Data on C-peptide from the participants in the Better Diabetes Diagnosis study from 2007 to 2010 were used. The definition of partial remission was insulin dose-adjusted HbA1c: HbA1c (%) + [4 × total daily insulin dose (U/kg/day)] ≤9.

Results: Of the 3887 patients, 56% were boys. More boys than girls were in partial remission throughout the follow-up period until 24 months after diabetes onset. Fewer children 0-6 years old had partial remission at 3 and 12 months but not at 24 months compared with older age-groups. A larger proportion of patients using CSII at 12 and 24 months remained in partial remission compared with those with MDI (37% vs. 33%, P = 0.02 and 31% vs. 27%, P = 0.01, respectively). The level of C-peptide was higher in the group with partial remission and mean HbA1c was lower (both P < 0.001). Partial remission at 12 months after diabetes onset was associated with CSII (odds ratio [OR]: 1.39, confidence interval [CI]:1.13, 1.71), shorter diabetes duration (OR: 0.80, CI: 0.76, 0.84), and male sex (OR: 1.23, CI: 1.04, 1.46).

Conclusions/Interpretation: Insulin through MDI, longer duration of diabetes, and female sex were associated with lower frequency of partial remission. Use of CSII seems to contribute to longer partial remission among Swedish children with type 1 diabetes.

Place, publisher, year, edition, pages
Mary Ann Liebert, 2024
Keywords
C-peptide, continuous subcutaneous insulin infusion, HbA1c, multiple daily injection, partial clinical remission
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-227863 (URN)10.1089/dia.2024.0112 (DOI)001254878300001 ()38842902 (PubMedID)2-s2.0-85197500148 (Scopus ID)
Available from: 2024-07-19 Created: 2024-07-19 Last updated: 2025-01-12Bibliographically approved
Fjällström, P., Coe, A.-B., Lilja, M. & Hajdarevic, S. (2023). Adopting standardized cancer patient pathways as a policy at different organizational levels in the Swedish health system. Health Research Policy and Systems, 21(1), Article ID 122.
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
García-Lorenzo, B., Gorostiza, A., González, N., Larrañaga, I., Mateo-Abad, M., Ortega-Gil, A., . . . de Manuel Keenoy, E. (2023). Assessment of the effectiveness, socio-economic impact and implementation of a digital solution for patients with advanced chronic diseases: the ADLIFE study protocol. International Journal of Environmental Research and Public Health, 20(4), Article ID 3152.
Open this publication in new window or tab >>Assessment of the effectiveness, socio-economic impact and implementation of a digital solution for patients with advanced chronic diseases: the ADLIFE study protocol
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2023 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 20, no 4, article id 3152Article in journal (Refereed) Published
Abstract [en]

Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.

Place, publisher, year, edition, pages
MDPI, 2023
Keywords
advanced chronic disease, chronic obstructive pulmonary disease, digital health, effectiveness, evaluation, heart failure, implementation, mixed-methods approach, socio-economic impact
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-205817 (URN)10.3390/ijerph20043152 (DOI)36833849 (PubMedID)2-s2.0-85148964852 (Scopus ID)
Available from: 2023-03-20 Created: 2023-03-20 Last updated: 2023-03-21Bibliographically approved
Bergström, G., Rosengren, A., Bacsovics Brolin, E., Brandberg, J., Cederlund, K., Engström, G., . . . Lind, L. (2023). Body weight at age 20 and in midlife is more important than weight gain for coronary atherosclerosis: Results from SCAPIS. Atherosclerosis, 373, 46-54
Open this publication in new window or tab >>Body weight at age 20 and in midlife is more important than weight gain for coronary atherosclerosis: Results from SCAPIS
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2023 (English)In: Atherosclerosis, ISSN 0021-9150, E-ISSN 1879-1484, Vol. 373, p. 46-54Article in journal (Refereed) Published
Abstract [en]

Background and aims: Elevated body weight in adolescence is associated with early cardiovascular disease, but whether this association is traceable to weight in early adulthood, weight in midlife or to weight gain is not known. The aim of this study is to assess the risk of midlife coronary atherosclerosis being associated with body weight at age 20, body weight in midlife and body weight change.

Methods: We used data from 25,181 participants with no previous myocardial infarction or cardiac procedure in the Swedish CArdioPulmonary bioImage Study (SCAPIS, mean age 57 years, 51% women). Data on coronary atherosclerosis, self-reported body weight at age 20 and measured midlife weight were recorded together with potential confounders and mediators. Coronary atherosclerosis was assessed using coronary computed tomography angiography (CCTA) and expressed as segment involvement score (SIS).

Results: The probability of having coronary atherosclerosis was markedly higher with increasing weight at age 20 and with mid-life weight (p < 0.001 for both sexes). However, weight increase from age 20 until mid-life was only modestly associated with coronary atherosclerosis. The association between weight gain and coronary atherosclerosis was mainly seen in men. However, no significant sex difference could be detected when adjusting for the 10-year delay in disease development in women.

Conclusions: Similar in men and women, weight at age 20 and weight in midlife are strongly related to coronary atherosclerosis while weight increase from age 20 until midlife is only modestly related to coronary atherosclerosis.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
Coronary artery calcium score, Midlife, Sex, Weight, Weight gain
National Category
Cardiology and Cardiovascular Disease
Identifiers
urn:nbn:se:umu:diva-205473 (URN)10.1016/j.atherosclerosis.2023.01.024 (DOI)001010662800001 ()36813601 (PubMedID)2-s2.0-85148722883 (Scopus ID)
Funder
Swedish Heart Lung FoundationKnut and Alice Wallenberg FoundationSwedish Research CouncilVinnovaUniversity of GothenburgKarolinska InstituteLinköpings universitetLund UniversityUmeå UniversityUppsala UniversitySwedish Heart Lung Foundation, 20180324Swedish Research Council, 2019–01140Swedish Research Council, 2018–02527AFA Insurance, 160334
Available from: 2023-03-17 Created: 2023-03-17 Last updated: 2025-02-10Bibliographically approved
Köpsén, S., Lilja, M., Hellgren, M., Sandlund, J. & Sjöström, R. (2023). Midwives' and diabetes nurses' experience of screening and care of women with gestational diabetes mellitus: a qualitative interview study. Nursing Research and Practice, 2023, Article ID 6386581.
Open this publication in new window or tab >>Midwives' and diabetes nurses' experience of screening and care of women with gestational diabetes mellitus: a qualitative interview study
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2023 (English)In: Nursing Research and Practice, ISSN 2090-1429, E-ISSN 2090-1437, Vol. 2023, article id 6386581Article in journal (Refereed) Published
Abstract [en]

Background: Gestational diabetes mellitus (GDM) is increasing and is associated with adverse outcomes for both mother and child. The metabolic demands of pregnancy can reveal a predisposition for type 2 diabetes mellitus (T2DM), and women with a history of GDM are more likely to develop T2DM than women with normoglycemic pregnancies.

Aim: The aim of this study was to explore midwives' and diabetes nurses' experience of their role in screening, care, and follow-up of women with gestational diabetes mellitus and, further, to explore their opinions and thoughts about existing routines and guidelines.

Method: Individual interviews were performed with ten diabetes nurses and eight midwives working in primary and special care. Qualitative content analysis was done according to Graneheim and Lundman.

Results: The analysis of the interviews resulted in the overall theme "An act of balance between normalcy and illness, working for motivation with dilemmas throughout the chain of health care."Difficulties in carrying out the important task of handling GDM while at the same time keeping the pregnancy in focus were central. Women were described as highly motivated to maintain a healthy lifestyle during pregnancy with the baby in mind, but it seemed difficult to maintain this after delivery, and compliance with long-term follow-up with the aim of reducing the risk of T2DM was low. The women came to the first follow-up but did not continue with later contact. This was at a time when the women felt healthy and were focusing on the baby and not themselves. A lack of cooperation and easy access to a dietician and physiotherapist were pointed out as well as a wish for resources such as group activities and multiprofessional teams.

Place, publisher, year, edition, pages
Hindawi Publishing Corporation, 2023
National Category
Nursing Endocrinology and Diabetes
Identifiers
urn:nbn:se:umu:diva-213737 (URN)10.1155/2023/6386581 (DOI)001042884400001 ()37546577 (PubMedID)2-s2.0-85168473172 (Scopus ID)
Funder
Region Jämtland Härjedalen
Available from: 2023-09-06 Created: 2023-09-06 Last updated: 2024-12-18Bibliographically approved
Boks, M., Lilja, M., Widerström, M., Karling, P., Lindam, A. & Sjöström, M. (2023). Persisting symptoms after Cryptosporidium hominis outbreak: a 10-year follow-up from Östersund, Sweden. Parasitology Research, 122(7), 1631-1639
Open this publication in new window or tab >>Persisting symptoms after Cryptosporidium hominis outbreak: a 10-year follow-up from Östersund, Sweden
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2023 (English)In: Parasitology Research, ISSN 0932-0113, E-ISSN 1432-1955, Vol. 122, no 7, p. 1631-1639Article in journal (Refereed) Published
Abstract [en]

In late 2010, an outbreak of Cryptosporidium hominis affected 27,000 inhabitants (45%) of Östersund, Sweden. Previous research shows that abdomen and joint symptoms commonly persist up to 5 years post-infection. It is unknown whether Cryptosporidium is associated with sequelae for a longer duration, how persisting symptoms present over time, and whether sequelae are associated with prolonged infection. In this prospective cohort study, a randomly selected cohort in Östersund was surveyed about cryptosporidiosis symptoms in 2011 (response rate 69.2%). A case was defined as a respondent reporting new diarrhoea episodes during the outbreak. Follow-up questionnaires were sent after 5 and 10 years. Logistic regressions were used to examine associations between case status and symptoms reported after 10 years, with results presented as adjusted odds ratios (aOR) with 95% confidence intervals. Consistency of symptoms and associations with case status and number of days with symptoms during outbreak were analysed using X 2 and Mann–Whitney U tests. The response rate after 10 years was 74% (n = 538). Case status was associated with reporting symptoms, with aOR of ~3 for abdominal symptoms and ~2 for joint symptoms. Cases were more likely to report consistent symptoms. Cases with consistent abdominal symptoms at follow-up reported 9.2 days with symptoms during the outbreak (SD 8.1), compared to 6.6 days (SD 6.1) for cases reporting varying or no symptoms (p = 0.003). We conclude that cryptosporidiosis was associated with an up to threefold risk for reporting symptoms 10 years post-infection. Consistent symptoms were associated with prolonged infection.

Place, publisher, year, edition, pages
Springer Nature, 2023
Keywords
Cryptosporidium, Diarrhoea, Disease outbreaks, PI-IBS, Post-infectious symptoms, Sequelae
National Category
Infectious Medicine Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:umu:diva-209290 (URN)10.1007/s00436-023-07866-8 (DOI)000990476700002 ()37199767 (PubMedID)2-s2.0-85159654199 (Scopus ID)
Funder
Region Jämtland Härjedalen, JLL-939404Region Jämtland Härjedalen, JLL-965542Region Jämtland Härjedalen, JLL-967794Region Jämtland Härjedalen, JLL-978075Region Jämtland Härjedalen, JLL-980156Visare Norr, 967799
Available from: 2023-06-08 Created: 2023-06-08 Last updated: 2025-02-20Bibliographically approved
Fjällström, P., Hörnsten, C., Lilja, M., Hultstrand, C., Coe, A.-B. & Hajdarevic, S. (2023). Reduction in the diagnostic interval after the introduction of cancer patient pathways for colorectal cancer in northern Sweden. Scandinavian Journal of Primary Health Care, 41(3), 287-296
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
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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
von Tottleben, M., Grinyer, K., Arfa, A., Traore, L., Verdoy, D., Lim Choi Keung, S. N., . . . Thienpont, G. (2022). An Integrated Care Platform System (C3-Cloud) for Care Planning, Decision Support, and Empowerment of Patients With Multimorbidity: Protocol for a Technology Trial. JMIR Research Protocols, 11(7), Article ID e21994.
Open this publication in new window or tab >>An Integrated Care Platform System (C3-Cloud) for Care Planning, Decision Support, and Empowerment of Patients With Multimorbidity: Protocol for a Technology Trial
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2022 (English)In: JMIR Research Protocols, E-ISSN 1929-0748, Vol. 11, no 7, article id e21994Article in journal (Refereed) Published
Abstract [en]

Background: There is an increasing need to organize the care around the patient and not the disease, while considering the complex realities of multiple physical and psychosocial conditions, and polypharmacy. Integrated patient-centered care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced information and communication technology solutions for semiautomated clinical decision support.

Objective: The Collaborative Care and Cure Cloud project (C3-Cloud) has developed 2 collaborative computer platforms for patients and members of the multidisciplinary team (MDT) and deployed these in 3 different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients with 2 or more chronic conditions (diabetes mellitus type 2, heart failure, kidney failure, depression), their informal caregivers, health care professionals, and, to some extent, health care systems.

Methods: This paper describes the protocol for conducting an evaluation of user experience, acceptability, and usefulness of the platforms. For this, 2 “testing and evaluation” phases have been defined, involving multiple qualitative methods (focus groups and surveys) and advanced impact modeling (predictive modeling and cost-benefit analysis). Patients and health care professionals were identified and recruited from 3 partnering regions in Spain, Sweden, and the United Kingdom via electronic health record screening.

Results: The technology trial in this 4-year funded project (2016-2020) concluded in April 2020. The pilot technology trial for evaluation phases 3 and 4 was launched in November 2019 and carried out until April 2020. Data collection for these phases is completed with promising results on platform acceptance and socioeconomic impact. We believe that the phased, iterative approach taken is useful as it involves relevant stakeholders at crucial stages in the platform development and allows for a sound user acceptance assessment of the final product.

Conclusions: Patients with multiple chronic conditions often experience shortcomings in the care they receive. It is hoped that personalized care plan platforms for patients and collaboration platforms for members of MDTs can help tackle the specific challenges of clinical guideline reconciliation for patients with multimorbidity and improve the management of polypharmacy. The initial evaluative phases have indicated promising results of platform usability. Results of phases 3 and 4 were methodologically useful, yet limited due to the COVID-19 pandemic.

Place, publisher, year, edition, pages
JMIR Publications, 2022
Keywords
acceptability, clinical decision support, cost-benefit evaluation, depression, diabetes mellitus type 2, evaluation, guidelines reconciliation, heart failure, multimorbidity, personalized care plans, polypharmacy, predictive modeling, renal failure, usability
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-198297 (URN)10.2196/21994 (DOI)000853015100001 ()2-s2.0-85134542049 (Scopus ID)
Funder
EU, Horizon 2020, 689181
Available from: 2022-07-29 Created: 2022-07-29 Last updated: 2024-01-17Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-5203-9877

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