title: Working in silos? - Head & Neck cancer patients during and after treatment with or without early palliative care referral.
abstract: OBJECTIVE
  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.
  
  
  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).
  
  
  CONCLUSIONS
  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.
authors.affiliation: Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden; Karolinska University Hospital, Department of Oncology, Stockholm, Sweden. Electronic address: helena.ullgren@sll.se.
authors.forename: Helena
authors.initials: H
authors.lastname: Ullgren
authors.affiliation: Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden.
authors.forename: Lily
authors.initials: L
authors.lastname: Kirkpatrick
authors.affiliation: Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden.
authors.forename: Sini
authors.initials: S
authors.lastname: Kilpeläinen
authors.affiliation: Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden; Karolinska Institutet, Department of Learning Informatics, Management and Ethics, Stockholm, Sweden.
authors.forename: Lena
authors.initials: L
authors.lastname: Sharp
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D006258:Head and Neck Neoplasms / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D006801:Humans; D007400:Interprofessional Relations; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D010360:Patient Transfer; D011788:Quality of Life / Q000523:psychology*; D012648:Self Care / Q000523:psychology*; D011795:Surveys and Questionnaires; D013548:Sweden
keywords: Care plan; Care transitions; Contact nurse; Head & Neck cancer; Health related quality of life; Information needs; Palliative care