Needs and preferences of patients with head and neck cancer in integrated care.

OBJECTIVES: Incorporation of patients' perspectives in daily practice is necessary to adapt care to users' needs. However, information on patients' needs and preferences for integrated care is lacking. The aim was to explore these needs and preferences, taking patients with head and neck cancer (HNC) as example, to adapt current integrated care to be more patient-centred. DESIGN: Semi-structured interviews were held with current and former patients and chairmen of patient associations. Relevant needs and preferences were identified and categorised using the eight-dimension Picker model of patient-centred care. SETTING: Integrated HNC in the Netherlands. PARTICIPANTS: Patients with HNC and chairmen of two Dutch HNC patient associations. MAIN OUTCOME MEASURES: Patients' needs and preferences of integrated HNC care categorised according the Picker model. RESULTS: A total of 34 themes of needs and preferences were identified, by 14 patients with HNC or their delegates, using the Picker dimensions. Themes often emerged were as follows: personalisation of health care regarding patient values; clear insight into the healthcare process at organisational level; use of personalised communication, education and information that meets patients' requirements; adequate involvement of allied health professionals for physical support; more attention to the impact of HNC and its treatment; adequate involvement of family and friends; adequate general practitioner involvement in the aftercare; and waiting time reduction. CONCLUSIONS: Monitoring the identified themes in integrated HNC care, fitting in the Picker model, will enable us to respond better to the needs and preferences of patients, and patient-centred care in oncological care can be enhanced.

Quality indicators of integrated care for patients with head and neck cancer.

OBJECTIVES: Oncological care is very complex, and delivery of integrated care with optimal alignment and collaboration of several disciplines is crucial. To monitor and effectively improve high-quality integrated oncological care, a dashboard of valid and reliable quality indicators (QIs) is indispensable. The aim was to develop multidisciplinary QIs to measure quality of integrated oncological care, specifically for head and neck cancer (HNC) patients. DESIGN: The RAND-modified Delphi method was used to decide on the outcome, process and structure QIs form three different perspectives. In addition, case-mix factors were determined. SETTING: Integrated HNC in the Netherlands. PARTICIPANTS: Head and neck cancer patients, chairmen of both patient organisations and medical specialists and allied health professionals involved in HNC care in the Netherlands. MAIN OUTCOME MEASURES: Outcome, process and structure indicators. RESULTS: Outcome indicators were assigned to healthcare status, tumour recurrence, complications, quality of life and patient experiences. The process indicators focused on the (allied health) care aspects during the diagnostic, treatment and follow-up phases, for example regarding waiting times, multidisciplinary team meetings and screening for the need of allied health care. CONCLUSIONS: This is the first set of multidisciplinary QIs for HNC care, to assess quality of integrated care agreed by patients and professionals. This set can be used to build other oncological quality dashboards for integrated care.