Who cares? Fragmentation or integration of cancer care

Sammanfattning: 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.