title: Symptoms and Needs of Head and Neck Cancer Patients at Diagnosis of Incurability - Prevalences, Clinical Implications, and Feasibility of a Prospective Longitudinal Multicenter Cohort Study.
abstract: BACKGROUND
  Little is known about the physical symptoms and psychosocial burden of patients at the time of diagnosis of an incurable situation, although cancer treatment guidelines demand early assessment and integration of palliative care concepts, beginning from the diagnosis of incurability.
  
  
  METHODS
  Therefore, we initiated a prospective longitudinal multicenter cohort study assessing the symptoms and needs of patients suffering from incurable cancer (various entities), from the time of diagnosing incurability (i.e., before palliative anticancer treatment was initiated) and in 3-monthly intervals thereafter, by using validated self-reporting tools. Here, we focus on patients with head and neck cancer and present preliminary results on symptoms and need prevalences, on clinical implications, and on the feasibility of a methodologically complex assessment procedure in a particularly vulnerable study population.
  
  
  RESULTS
  22 patients completed the first visit. The Eastern Cooperative Oncology Group (ECOG) performance scores and most physical symptoms and psychosocial items varied between the extremes, from a virtually uncompromised condition to extremely perceived symptoms and needs. If intense face-to-face study support was provided, the study concept proved to be feasible, despite the complexity of assessment, problems in interdisciplinary and patient communication, comorbidities, and early death from complications.
  
  
  CONCLUSIONS
  The striking variability in the perceived symptom and need intensities requires a highly individualized approach. For clinical purposes, a less complex screening procedure would be desirable, in order to enable a routine, early and comprehensive support, including palliative care services.
authors.affiliation: Department of Palliative Medicine, University Medical Center Gx00F6;ttingen, Gx00F6;ttingen, Germany.
authors.forename: Bernd
authors.initials: B
authors.lastname: Alt-Epping
authors.forename: Wiebke
authors.initials: W
authors.lastname: Seidel
authors.forename: Jeannette
authors.initials: J
authors.lastname: Vogt
authors.forename: Anja
authors.initials: A
authors.lastname: Mehnert
authors.forename: Michael
authors.initials: M
authors.lastname: Thomas
authors.forename: Birgitt
authors.initials: B
authors.lastname: van Oorschot
authors.forename: Hendrik
authors.initials: H
authors.lastname: Wolff
authors.forename: Henning
authors.initials: H
authors.lastname: Schliephake
authors.forename: Martin
authors.initials: M
authors.lastname: Canis
authors.forename: Leif H
authors.initials: LH
authors.lastname: Dröge
authors.forename: Friedemann
authors.initials: F
authors.lastname: Nauck
authors.forename: Florian
authors.initials: F
authors.lastname: Lordick
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000072716:Cancer Pain / Q000453:epidemiology / Q000517:prevention & control / Q000523:psychology*; D002908:Chronic Disease; D015331:Cohort Studies; D015897:Comorbidity; D016638:Critical Illness / Q000451:nursing / Q000523:psychology; D005240:Feasibility Studies; D005260:Female; D005858:Germany / Q000453:epidemiology; D006258:Head and Neck Neoplasms / Q000453:epidemiology / Q000451:nursing / Q000523:psychology*; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010166:Palliative Care / Q000523:psychology* / Q000706:statistics & numerical data; D015995:Prevalence; D011379:Prognosis; D011446:Prospective Studies; D011584:Psychology; D012307:Risk Factors; D057566:Self Report; D013315:Stress, Psychological / Q000453:epidemiology / Q000517:prevention & control / Q000523:psychology*; D063189:Symptom Assessment; D017211:Treatment Failure; D016896:Treatment Outcome