Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

The increased length of the ICDs is explained by an increased complexity of the documents and especially more information about formalities. This development increasingly demands competent readers and might prohibit truly informed consents.

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Background The Patient-Generated Subjective Global Assessment (PG-SGA) is a patient-reported instrument for assessment of nutrition status in patients with cancer. Despite thorough validation of PG-SGA, little has been reported about the way patients perceive, interpret, and respond to PG-SGA. The aim of this study was to investigate how patients interpret the patient-generated part of the PG-SGA, called PG-SGA Short Form. Methods Purposive sampling was used to identify participants that had experienced weight loss and/or reduced dietary intake and/or had a low body mass index. Data were collected from 23 patients by combining observations of patients filling in the PG-SGA Short Form, think-aloud technique and structured interviews, and analyzed qualitatively using systematic text condensation. Results Most of the participants managed to complete the PG-SGA Short Form without problems. However, participant-related and questionnaire-related sources of misinterpretation were identified, possibly causing misinterpretations or wrong/missing answers. Participants either read too fast and skipped words, or they struggled to find response options that were suitable for covering their entire situation perfectly. The word “normal” was perceived ambiguous, and the word “only” limited the participants’ possibility to accurately describe their food intake. Long recall periods in the questions and two-pieced response options made it difficult for patients to select only one option. Conclusion The results of this study provide a unique patient perspective of using the PG-SGA Short Form and valuable input for future use and revisions of the form. The identified sources of misunderstanding could be used to develop a standardized instruction manual for patients and health care personnel using the PG-SGA Short Form.

Background Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants’ experiences and opinions were investigated as part of this development process. Methods The aim of this qualitative study was to explore and describe health care professionals’ experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. Results In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals’ carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers’ needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. Conclusions Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.

BackgroundKnowledge about disease and treatment is necessary before patients can consent to treatment. One of the few established instruments for evaluating whether sufficient information has been provided, is the EORTC QLQ-INFO25 questionnaire which was developed to measure how patients perceive information. The aim of this study was to investigate whether cancer patients’ level of knowledge about their disease and treatment was associated with their perception of and satisfaction with the information.MethodsBreast cancer patients referred for adjuvant chemotherapy and prostate cancer patients referred for curative radiotherapy were included. Level of knowledge about their disease and treatment was measured using study-specific questionnaires. Patients’ perception of and satisfaction with the received information was assessed using EORTC QLQ-INFO25. Assessments were done before the first consultation with an oncologist (T1), after the consultation (T2) and 8 weeks after start of treatment (T3).ResultsNinety eight patients were enrolled. Patients with higher education, daily Internet access and in paid employment had the highest baseline knowledge scores. The mean knowledge score increased significantly (T1: 16.4; T2: 20.8; T3: 21.3; p < 0.001.). During the same period, the patients reported on the INFO25 a significant, positive increase in how much information they had received, and that they were more satisfied with the information.ConclusionsPatients’ knowledge increased significantly during the study period, and they reported that they felt better informed and were more satisfied with the information, suggesting that EORTC QLQ-INFO25 might be used to evaluate cancer patients’ level of knowledge about their disease and treatment.Trial registrationClinicalTrials.gov identifier: NCT01699672. Date of registration: September 21, 2012.

Objective Extensive research has documented the negative nutritional impact of head neck cancer (HNC) treatment, but few studies have addressed the patients' experiences. The purpose of this study was to describe how patients with HNC experience the nutritional situation and perceive nutritional support from diagnosis to the post‐treatment phase. Methods Patients with HNC were recruited from a randomised pilot study. Individual interviews were conducted after radiotherapy with 10 participants aged 49 – 70 years and analysed by qualitative content analysis. Results Undergoing surgery was experienced as a poor nutritional starting point for the upcoming radiotherapy. During radiotherapy, increasing side effects made the participants customise their meals to improve food intake. About halfway through radiotherapy, virtually no food intake was experienced and hospital admissions and initiations of tube‐feeding occurred in this period. Oral nutritional supplements were recommended for all, but eventually became unbearable to ingest. When radiotherapy was finally completed, the participants felt discouraged about the persistent side effects preventing them from resume eating. The participants missed tailored information about development of side effects and involvement of a dietitian when reflecting on the treatment‐period. Conclusion The comprehensive nutritional problems experienced by patients with HNC require early nutritional assessments and improved individually tailored nutritional support.

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