Young cancer patients experience sexual and romantic challenges along with a lack of self-perceived attractiveness. Their substantial need for dialogue and counselling should be met in health care settings.

Patient-rated importance was a useful method in identifying the care patients preferred. Due to a limited number of studies and great diversity within studies evaluated, interpretation of results should be cautious. However, it seems that cancer patients treated in hospitals with a curative intent find treatment-related information, professional standard and short delay of diagnosis and treatment most important.

Learning how patient characteristics influence the overall rating of care can enable health care providers to accommodate vulnerable patient groups. Identification of health care aspects that are independently associated with the overall rating of care may enable targeted efforts when planning and prioritizing initiatives aimed at improving the patient-experienced quality of care. Cancer 2017;123:2918-26. © 2017 American Cancer Society.

This is one of few developed questionnaires aiming to evaluate the perspective of AYAs with cancer through their whole cancer trajectory. Results from the questionnaire survey are intended for quality improvements and research in AYA cancer care. The study highlights the importance of an extensive patient involvement in all steps of a questionnaire development process.

BackgroundPatient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are tools for assessing outcomes of and experiences with health care from the patient’s perspective. In Germany, PROMs are widely used in research for evaluating patient outcomes and quality of care. However, the application of PREMs is rather scant, especially in oncology. The study aimed to assess the feasibility of patient-centred quality evaluation in oncological care in Germany using the German adaptation of the Danish National Cancer Patient Questionnaire. This questionnaire is a PREM/PROM-tool addressing patients of all cancer sites and covering the entire cancer patient pathway.MethodsThe Danish National Cancer Patient Questionnaire was translated into German via forward-backward translation. Face-validity was tested among three cancer patients in a conventional pre-test. The German adaptation contains 99 questions. A pilot test was carried out among 245 newly diagnosed breast and colorectal cancer patients in the German federal state Schleswig-Holstein. Patients were recruited via clinics participating in the Oncological Care Registry (12 specialised units in seven hospitals) and contacted six to nine months after diagnosis. Response behaviour and response patterns were compared to the Danish study population (n = 1964).ResultsThe willingness among clinicians to support patient recruitment as well as the response rate of patients to the questionnaire was high (65%). Moreover, response behaviour and response patterns of German and Danish patients were consistent. Despite the generally good response behaviour of patients to the single items, the authors observed that questions assessing the diagnostic process did not fully capture German pathways. Only 19.3% of the German patients stated that their diagnostic process was initiated by a visit to a general practitioner (GP) in contrast to 52% in Denmark. The assessment of patient experiences in the diagnostic phase heavily focuses on experiences in general practice, which does not seem appropriate in the German health care setting.ConclusionThe translation was successful, and the feasibility of a future large-scale study within existing structures is given. However, some modifications of questions heavily related to the Danish health care system, especially referring to the diagnostic phase, are necessary.