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Who cares? Fragmentation or integration of cancer care
Umeå University, Faculty of Medicine, Department of Nursing.ORCID iD: 0000-0001-5747-853x
2021 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Vem ansvarar i cancervården? Fragmentering eller integrering (Swedish)
Abstract [en]

Background: New cancer treatments and increased accessibility of palliativecare have resulted in improved treatment outcomes. Coordination andcommunication between different health care professionals and providers mayimpact patient satisfaction and quality of care. The phases of curativetreatments, palliative and end-of-life care, are now less distinct and oftenoverlap, which may challenge clinical decision-making and the assessment ofthe patient’s prognosis. It is recommended that palliative care is integratedalongside acute cancer care and introduced earlier in the disease trajectoryconcurrent with ongoing cancer treatment and follow-up. Health care utilizationcan be defined as the description and quantification of how a patient uses healthcare services to improve a health problem and/or increase wellbeing. One of theways of measuring the quality of care and the performance of a health caresystem is to analyze different aspects of health care utilization. Intensity oftreatment and care at the end of life is a measure of quality and may identifyareas of end-of-life care organization that are in need of improvement. Recentresearch indicates that certain socioeconomic factors might impact health careutilization and intensity of treatment and care at the end of life.

Aim: To explore different aspects of health care utilization for patients withcomplex cancer care trajectories in a changing cancer care.

Methods: In this thesis a combination of quantitative data, both populationbasedregistry, survey (studies I-III) and qualitative data from focus groupinterviews (study (IV), were used. The participants are patients with complexcancer care trajectories (studies I-III), nurses and physicians from acute cancercare and specialized palliative care at home (study IV) in the region ofStockholm, Sweden. The purpose was to explore health care utilization fromdiagnosis to the end of life.

Results: The results of studies I –III show several factors associated withhigher levels of health care utilization; living alone, younger age, more advanceddisease stage and multimodality treatment. In addition, the group with bothacute cancer and SPC at home are a vulnerable group with higher levels ofsymptoms and unplanned/acute care, risking unnecessary care transitions.Study I (203 patients with head and neck cancer) revealed lower satisfactionwith the amount of information received regarding diagnosis and treatment inthe group having a palliative care referral. Study II (1718 patients with head andneck, gynecological, upper gastrointestinal or hematological cancer) found thatnearly a quarter of those with both acute cancer and SPC at home care hadmultiple (three or more) unplanned hospital admissions. Study III (1726patients with lung or pancreatic cancer) found increased levels of intensity ofivcare when comparing the years 2010 and 2017, and a shift of care from inpatientto outpatient care. The results of study IV (23 participants in six focus groups)indicates uncertainty among health care professionals in both acute andpalliative cancer care regarding their organization, mandate, andresponsibilities as well as the prognosis of the patients. Participants from bothsettings (acute and palliative cancer care) discussed their responsibilities and itappeared to be clear for them who was responsible for symptom management(palliative care) and cancer treatments (acute cancer care). However,uncertainties about the overarching, holistic responsibility.

Conclusions and clinical implications: In summary, our findings describecancer care in one large region of Sweden and issues related to fragmentationand health care utilization. These issues have consequences that may impactpatients, informal caregivers, the health care system, and health careprofessionals in terms of quality and safety. There are several suggestions forimprovements, such as a focus on integration of care on all levels (policy andorganization) and building a system steered primarily by the quality of care in aperson-centered integrated system.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet , 2021. , p. 69
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2159
Keywords [en]
Health care utilization, end-of-life care, integrated care, palliative care, clinical decision-making
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-188860ISBN: 978-91-7855-656-4 (print)ISBN: 978-91-7855-657-1 (electronic)OAI: oai:DiVA.org:umu-188860DiVA, id: diva2:1605785
Public defence
2021-11-19, Aula Biologica, Biologihuset, Umeå Universitet, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2021-10-29 Created: 2021-10-25 Last updated: 2021-10-28Bibliographically approved
List of papers
1. Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral
Open this publication in new window or tab >>Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral
2017 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 26, p. 56-62Article in journal (Refereed) Published
Abstract [en]

Purpose: The primary aim was to describe patients with Head and Neck (H&N) cancer referred to palliative care and how the care transition from acute oncological to palliative care impacted on both Health related quality of life (HRQoL) and information. The secondary aim was to explore H&N cancer patients' HRQoL and perceived information.

Methods: H&N cancer patients were identified via the Swedish Cancer Register. Data were collected using the following questionnaires; European Organization for Research and Treatment of Cancer (EORTC) QLQ C-30, INFO25, and a study-specific questionnaire.

Key results: Out of 289 patients, 203 (70%) responded and among these, 43 (21%) reported being referred to palliative care. Global health was the lowest reported functional scale (median score = 67) and fatigue (median scores 33) the highest reported symptom (QLQ C-30). Patients with a written care plan were significantly more satisfied with information regarding self-care compared to patients without a care plan. Patients referred to palliative care were less satisfied with information regarding disease (p < 0.000), the spread of the disease (p < 0.001) and were more likely to visit hospital emergency departments (43% vs. 19% p < 0.000).

Conclusion: To avoid H&N cancer care in silos, a closer integration between the oncology and the palliative care team is needed. Further research on the complex situation of having oncological treatment concurrent with palliative care, is needed.

Place, publisher, year, edition, pages
Elsevier, 2017
Keywords
Oncology(nursing), General Medicine
National Category
Medical and Health Sciences
Research subject
Caring Sciences; Oncology
Identifiers
urn:nbn:se:umu:diva-188858 (URN)10.1016/j.ejon.2016.12.003 (DOI)000392887400008 ()28069153 (PubMedID)2-s2.0-85006792149 (Scopus ID)
Available from: 2021-10-25 Created: 2021-10-25 Last updated: 2021-10-26Bibliographically approved
2. Factors associated with healthcare utilisation during first year after cancer diagnose: a population-based study
Open this publication in new window or tab >>Factors associated with healthcare utilisation during first year after cancer diagnose: a population-based study
2021 (English)In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 30, no 2, article id e13361Article in journal (Refereed) Published
Abstract [en]

Background: Improved cancer treatments and models of care (such as early palliative care) has developed during recent years. Aspects of healthcare utilisation—unplanned care have been used for evaluation of coordination and quality. The aim was to explore factors associated with cancer healthcare utilisation, during the first year after a cancer diagnosis.

Methods: Population‐based registry and patient‐reported data, (The European Organisation of Research and Treatment of Cancer (EORTC), QLQ‐ C30 questionnaire and study‐specific questions) were collected. Descriptive statistics and multivariate regression models were performed.

Results: The sample consists of 1718 patients (haematological, gynaecological, upper gastrointestinal and head and neck cancers). Living alone were associated with unplanned hospital admissions (OR 1.35; 95% CI [1.15, 1.59], p < 0.001). Patients with specialised palliative home care had a higher likelihood of unplanned hospital admissions, (OR 4.35; 95% CI [3.22‐5.91], p < 0.001) and re‐admissions within 30 days, (OR, 5.8; 95% CI [4.12‐8.19], p < 0.001).

Conclusions: Sociodemographic and clinical factors, such as living alone and disease stage, is associated with healthcare utilisation. Patients with specialised palliative home care report lower levels of HRQoL and higher levels of unplanned care, and our findings stresses the importance of a holistic view when planning care.

Place, publisher, year, edition, pages
John Wiley & Sons, 2021
Keywords
Hospitalisation, Length of Stay, Neoplasms, Palliative care, Patient Acceptance of Health Care, Patient Re&#8208, admission
National Category
Nursing Cancer and Oncology
Identifiers
urn:nbn:se:umu:diva-177491 (URN)10.1111/ecc.13361 (DOI)000591186400001 ()33216423 (PubMedID)2-s2.0-85096709734 (Scopus ID)
Funder
Cancerforskningsfonden i Norrland, AMP 18-928
Available from: 2020-12-29 Created: 2020-12-29 Last updated: 2021-10-25Bibliographically approved
3. Health care utilization at end of life among patients with lung or pancreatic cancer. Comparison between two Swedish cohorts
Open this publication in new window or tab >>Health care utilization at end of life among patients with lung or pancreatic cancer. Comparison between two Swedish cohorts
Show others...
2021 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 16, no 7, article id e0254673Article in journal (Refereed) Published
Abstract [en]

Objectives: The purpose was to analyze trends in intensity of care at End-of-life (EOL), in two cohorts of patients with lung or pancreatic cancer.

Setting: We used population-based registry data on health care utilization to describe proportions and intensity of care at EOL comparing the two cohorts (deceased in the years of 2010 and 2017 respectively) in the region of Stockholm, Sweden.

Primary and secondary outcomes: Main outcomes were intensity of care during the last 30 days of life; systemic anticancer treatment (SACT), emergency department (ED) visits, length of stay (LOS) > 14 days, intensive care (ICU), death at acute care hospital and lack of referral to specialized palliative care (SPC) at home. The secondary outcomes were outpatient visits, place of death and hospitalizations, as well as radiotherapy and major surgery.

A multivariable logistic regression analysis was used for associations. A moderation variable was added to assess for the effect of SPC at home between the cohorts.

Results: Intensity of care at EOL increased over time between the cohorts, especially use of SACT, increased with 10%, p<0.001, (n = 102/754 = 14% to n = 236/972 = 24%), ED visits with 7%, p<0.001, (n = 25/754 = 3% to n = 100/972 = 10%) and ICU care, 2%, p = 0.04, (n = 12/754 = 2% to n = 38/972 = 4%). High intensity of care at EOL were more likely among patients with lung cancer. The difference in use of SACT between the years, was moderated by SPC, with an increase of SACT, unstandardized coefficient β; 0.87, SE = 0.27, p = 0.001, as well as the difference between the years in death at acute care hospitals, that decreased (β = 0.69, SE = 0.26, p = 0.007).

Conclusion: These findings underscore an increase of several aspects regarding intensity of care at EOL, and a need for further exploration of the optimal organization of EOL care. Our results indicate fragmentation of care and a need to better organize and coordinate care for vulnerable patients.

National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-186412 (URN)10.1371/journal.pone.0254673 (DOI)000678121400025 ()2-s2.0-85110421008 (Scopus ID)
Funder
Swedish Cancer Society, AMP 18-928
Available from: 2021-07-29 Created: 2021-07-29 Last updated: 2023-09-05Bibliographically approved
4. Uncertainty when caring for patients with complex cancer care trajectories - perceptions of health care professionals from acute and palliative care regarding clinical decision-making
Open this publication in new window or tab >>Uncertainty when caring for patients with complex cancer care trajectories - perceptions of health care professionals from acute and palliative care regarding clinical decision-making
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-188859 (URN)
Available from: 2021-10-25 Created: 2021-10-25 Last updated: 2021-10-27

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