gms | German Medical Science

Background: Patient centered information and decision making is a requirement from an ethical, legal and also clinical perspective. In Germany several studies have explored patients’ preferences regarding decision making for specified patient groups (e.g. women with breast cancer) and within a research context such as interventions on “shared decision making”. However, to our knowledge there is scarcity of data on patients’ control preferences elicited within the context of routine clinical care for patients with cancer. In addition little is known about possible clinical determinants for patients’ control preference. We present first findings from a study investigating cancer patients’ control preferences and possible determinants within a routine clinical care context.

Methods: Patients presenting for the first time at the University Cancer Center of the University Hospital Dresden were offered a self-administered electronic questionnaire with questions on quality of life (EORTC QLQ C30), needs for psycho-oncological support (Hornheider Screening Instrument), psychosocial distress (NCCN Distress-Thermometer), decisional control preferences (Control Preference Scale), nutritional assessment (Mini-Nutritional Assessment), pain assessment (Brief Pain Inventory) and patients estimated performance status (adapted Karnofsky Score). Patient reported outcomes (PROs) were combined with data on diagnosis, treatment intention (curative/palliative) and further clinical parameters as collected in the electronic patient chart. Hypothezising that older age, more progressed disease and higher needs for psycho-oncological support are related to leaving the responsibility of the treatment decision with the physician we investigated possible determinants of the patients decisional control preferences by applying cross sectional analysis.

Results: Overall 126 out of 160 patients (78%) agreed to complete the electronic questionnaire. 63% of the patients were diagnosed with gastrointestinal tumors whereas smaller percentages had lung cancer (6%), skin cancer (6%) and cancer of unknown primary (6%). A total of 102 patients (81%) completed the Control Preference Scale. Of these 67 (66%) patients were male and 35 (34%) were female. The average age of participants was 62 years (SD±14, min: 20, max: 85 years). Overall 49% preferred shared responsibility with regards to treatment decision making, 28% preferred to leave the control rather to their physician whereas 22% preferred to be in control about treatment decisions. Statistical analysis indicated that higher age of patients was significantly associated with willingness to leave the decision with the physician (p= 0.035). Gender (p=0.431) and education (p=0.433) were not associated with control preferences. Higher levels of distress were significantly associated with delegation of control to physicians (p= 0.038). In addition there was a tendency but no statistical significant association (p=0.053) between higher levels of pain and delegation of control for decision making. Quality of life (p=0.453), performance status (p=0.683), nutritional status (p=0.763), intention of treatment (p=0.683) and need of psycho-oncological support (p=0.538) were not significantly associated with control preferences of patients.

Discussion: Our study shows that PROs including patients’ control preferences can be elicited as part of routine clinical care. The findings on differing degrees of control preference in patients with cancer and possible determinants need to be assessed further on in larger samples of patients optimally including detailed data on disease and treatment.

Implications for practice: The feasibility of the project and the data gained at this stage suggest that physicians at specialist centers may benefit from this information to tailor the decision making process according to needs and preferences of their patients.