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Working in silos? – Head & Neck cancer patients during and after treatment with or without early palliative care referral
Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden; Karolinska University Hospital, Department of Oncology, Stockholm, Sweden.ORCID-id: 0000-0001-5747-853x
2017 (Engelska)Ingår i: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 26, s. 56-62Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
Elsevier, 2017. Vol. 26, s. 56-62
Nyckelord [en]
Oncology(nursing), General Medicine
Nationell ämneskategori
Medicin och hälsovetenskap
Forskningsämne
omvårdnadsforskning med medicinsk inriktning; onkologi
Identifikatorer
URN: urn:nbn:se:umu:diva-188858DOI: 10.1016/j.ejon.2016.12.003ISI: 000392887400008PubMedID: 28069153Scopus ID: 2-s2.0-85006792149OAI: oai:DiVA.org:umu-188858DiVA, id: diva2:1605675
Tillgänglig från: 2021-10-25 Skapad: 2021-10-25 Senast uppdaterad: 2021-10-26Bibliografiskt granskad
Ingår i avhandling
1. Who cares? Fragmentation or integration of cancer care
Öppna denna publikation i ny flik eller fönster >>Who cares? Fragmentation or integration of cancer care
2021 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Alternativ titel[sv]
Vem ansvarar i cancervården? Fragmentering eller integrering
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.

Ort, förlag, år, upplaga, sidor
Umeå: Umeå Universitet, 2021. s. 69
Serie
Umeå University medical dissertations, ISSN 0346-6612 ; 2159
Nyckelord
Health care utilization, end-of-life care, integrated care, palliative care, clinical decision-making
Nationell ämneskategori
Omvårdnad
Forskningsämne
omvårdnadsforskning med medicinsk inriktning
Identifikatorer
urn:nbn:se:umu:diva-188860 (URN)978-91-7855-656-4 (ISBN)978-91-7855-657-1 (ISBN)
Disputation
2021-11-19, Aula Biologica, Biologihuset, Umeå Universitet, Umeå, 09:00 (Svenska)
Opponent
Handledare
Tillgänglig från: 2021-10-29 Skapad: 2021-10-25 Senast uppdaterad: 2021-10-28Bibliografiskt granskad

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