Palliative Care Yields Cancer Wellbeing Support

The primary outcome of this research project will be the difference between the readmission rate from the control group and the intervention group. This was chosen based on the presumption that if the communication between healthcare professionals improves, the transition to home will be better and patients will be less likely to require hospital care. Another advantage is that it is a feasible and often well documented outcome measure which can be retrieved across multiple sites in multiple countries. A second advantage especially relevant for studies concerned with palliative care patients is that it can be measured early, as many patients die (of unrelated causes) during the study. By measuring early measurement compliance can be ensured.

In order to gain some background on which relative is filling in the FAMCARE, the relative will also be asked some demographic questions concerning their age, gender and relationship to patient.

In addition to the number of admissions, another important indicator for the effectiveness of the Pal-Cycles interventions is the quality of life of life. To measure this multiple questionnaires will be used. One of them being the EORTC QLQ-C30. The questionnaire comprises of 30 questions assessing the patients ability to function from a physical, emotional, cognitive and functional point of view. For 28 of the questions the response can be given via a four point Likert scale giving the options: not at all, a little, quite a bit, very much. Where 1, not at all, indicates a higher score than 4, very much. The last two questions can be responded to via a visual analogue scale from 1 to7 (poor to excellent). Where 7, excellent, indicates a higher score than than 1, poor.

The other questionnaire that will be used to measure the patients quality of life is the FACT-G. The FACT-G was specifically developed to measure the cancer patient's health-related quality of life. This questionnaire for current and former cancer patients, is made up of 27 questions regarding quality of life by assessing wellbeing in four domains: physical, emotional, cognitive and functional. To all questions can be responded by filling in a 5 point likert scale; not at all, a little bit, somewhat, quite a bit and very much. Where 0, not at all, indicates a better score than 4, very much.

Another important outcome measure for this study is whether or not the Pal-Cycles intervention improves the quality of care. A key part of the Pal-Cycles intervention is the conversation between the clinician and the patient where the transition from curative oncological care to palliative care is discussed. To evaluate this conversation the CARE measure was included in the study. This questionnaire consists of ten Likert scale questions in which the emotional, ethical, cognitive and behavioural elements of the consultation.

The patients can respond to the questionnaire by using a five point Likert scale consisting of the following options: 1 poor,2 fair, good,3 very good, 4 excellent. Where 4 excellent is indicating a better conversation than 3 very good.

The Caregiver Network Analysis was developed based on existing literature during a previous European project Insup-c for the purposes of a care network analysis. In the current project the objective is to improve the transition from curative care at the hospital to palliative care at home by ameliorating the communication between healthcare professionals. The questionnaire could assist in establishing if this is effective. The caregiver network analysis consists of twelve questions about which healthcare providers the patient has contact with as well as how the patient perceives their level of cooperation and quality of care. The answer options vary from dichotomous answer categories and open ended answers to 5- point Likert scales which have a range from 0 to 4. Where 4 , strongly agree, indicates a better score than 0 strongly disagree.

Family carers play a large role in caring for patients with palliative care needs. There is an international trend to reduce hospital admission days and stimulate, community care, in order to decrease healthcare costs, but also to empower patients and their families. Therefore, measuring the family satisfaction with care has become integral to evaluating the quality of care. A scale that has proven to be a reliable measurement instrument is the FAMCARE. It was developed to measure satisfaction on performance of individual care takers performance of family members of patients with advanced cancer. This questionnaire consists of 20 questions to which can be responded to by a five point Likert scale. Where 1, very satisfied, indicates a better score than 5, very dissatisfied.

The demographic characteristics of the patient will be asked in a questionnaire. In addition to participating in the stepped wedge clinical trial described in this research protocol, they are also the co-lead on work package 5. This work package has as objective to analyse whether certain "sensitive" characteristics have influenced the quality of care of the patient during the oncology treatment. To limit patient burden the demographic characteristics in the questionnaire such as gender, age, civil status and members of the household will also be used as background information for the stepped wedge clinical trial.