Feasibility and acceptability of the study procedures
Inclusion & drop out of patients
From October 2017 to February 2018, all patients with advanced cancer receiving active oncological treatment in the two involved hospitals were screened for eligibility by all oncologists. The EPHECT intervention was introduced by the data manager to 41 eligible patients of which 39 consented to participate and filled in a questionnaire at baseline. Of those 39 patients, 7 patients died and 2 dropped out between baseline measurement and the first visit of the PHC team four weeks later. The 2 patients who dropped out were not convinced of the added value of the intervention. A flowchart of the study can be found in figure 1.
Thus, 30 of the 41 eligible patients (73%) were visited at least once by the PHC team. Characteristics of those 30 patients are presented in table 4. The most common cancer type was digestive cancer (47%), followed by lung (17%) and Triple Negative breast cancer (17%). 26/30 patients (86,6%) filled in the questionnaire at 12 weeks, 21/30 (70%) at 18 weeks and 18/30 (60%) at 24 weeks. Most of the patients who dropped out during the 24 weeks died, 2 patients dropped out due to personal reasons.
Of those 30 patients, 13 included a family caregiver who gave consent and also filled in a questionnaire at baseline, 12, 18 and 24 weeks. Drop out in family caregivers during the intervention period was directly linked to drop out in patients.
Feasibility of inclusion and exclusion criteria
All 5 oncologists reported in the interviews that it was easier to estimate a life expectancy of six months than two years. Instead of using prognosis as primary inclusion criterium, oncologists suggested to introduce palliative home care from diagnosis of an advanced disease. Two made an exception for breast cancer because those patients could live for five or ten years with metastases. They suggested to introduce palliative home care to those patients after two episodes of chemotherapy. Some patients mentioned that they would have liked palliative home care to be introduced even earlier in the disease trajectory because it would have created more time and space for building up a relationship with the PHC nurse.
Feasibility and acceptability of the intervention components
To evaluate the feasibility and acceptability of the intervention components, information from the logbooks of professional caregivers, conversation guides filled in by the PHC team and electronic patient files were combined with information gathered from the interviews with patients, family caregivers and professional caregivers. Because the feasibility and acceptability of the intervention are closely linked, we have decided to discuss each intervention component separately with a combination of both the quantitative and the qualitative data.
Only one GP was suspicious in the beginning about the added value of visits by the PHC team for his patient. However, all GPs eventually gave permission to include their patients in the EPHECT intervention.
Education for nurses of the PHC team
Although nurses of the PHC team had the possibility to ask questions about oncological diseases and treatments in the information sessions, they had the feeling in the first home visits that they did not know enough to answer questions about oncology care. Instead of answering these questions, they empowered the patients in asking the questions to the oncologist on the first following consultation. Despite nurses’ feelings of uncertainty about their ability to handle issues related to diagnoses, prognoses and oncological treatments at the beginning of the intervention period, interviews with patients and family caregivers showed that the nurse of the PHC team often provided information about diagnosis and prognosis if needed and the nurses confirmed that experience with early palliative care trajectories was important in increasing their self-efficacy.
Regular home visits by the PHC team
During the six-month intervention period, nurses of the PHC team visited the patients on average four times. Six patients were visited only once, five of them died before the second visit and one patient found the visits too time-consuming and not useful. Ten of 30 patients were visited monthly as recommended in the intervention protocol, resulting in six or more visits. Reasons that members of the PHC team gave for visiting patients less often or not monthly were that sometimes patients were admitted to the hospital and visits had to be rescheduled to a later time. Some visits to the patient’s home were replaced by a telephone call when the patient did not need a home visit for instance when they stabilized or their condition improved. More frequent visits (more often than once a month) occurred when the patient’s health condition got worse or when the patient was closer to death.
The 15 interviews with patients and family caregivers showed that they did not have problems with being involved in palliative home care whilst receiving ongoing anticancer treatment and that visits were considered necessary monthly in the beginning of the trajectory for building a trusting relationship. Most patients found that once this relationship was established, monthly visits were acceptable but not needed and most patients were glad that the visits were planned by the PHC team. Some patients told that they would not contact the PHC nurse by themselves even though they evaluated the visits as beneficial. The main reason for this lack of taking initiative was that patients had other things to worry about than contacting the PHC nurse. If their health condition would stabilize or improve, some patients in that case recommended to plan PHC visits according to their needs. In the focus group the PHC team agreed for future care on planning the visits in dialogue with the patient and the family caregiver, whilst following them up by telephone.
Semi-structured conversation guide
Most nurses evaluated the conversation guide as a useful tool to structure the conversations with the patient during the home visits and to reflect back with the patient and family caregiver on what was discussed during previous home visits. Few patients noticed that the visits were always structured in the same way, but it did not bother them.
Analyses of the patient files show that the main focus of the visits was on physical symptom management. Some patients reported that the nurse of the PHC team had given them and the GP advise on medication use. Analyses of the patient files also showed that being involved earlier gave the nurses of the PHC team the opportunity to provide holistic care and to spend more time on topics other than symptom management like disease insight – reflecting on what the patient knows about his/her disease, treatment and prognosis –, coping with the illness and the treatments and advance care planning. Members of the PHC team revealed in the focus group that they were initially concerned that providing more holistic care would require a different approach and different skills, but the more experience they gained with the intervention, the more they felt it was their responsibility to discuss not only physical symptoms, but also preferences for future care, coping or other psychosocial issues. According to patients and to the nurses of the PHC team, psychosocial and existential issues were indeed also important topics in the home visits with the patient. One patient received support and advise for sexual problems, others reported support on financial and practical level. The PHC team also talked with the patients about diagnoses and prognoses, information that was often not given by the oncologist.
Lastly, analyses of the interviews showed that during the home visits, little attention was given to how the family caregiver was coping. Although most family caregivers reported that they had received enough support of the PHC team, some mentioned that the nurse of the PHC team was mainly focused on the patient and that they had expected to be involved more.
“I’d expected more from the support of that nurse. The focus was still on my partner and I still had the feeling that nobody listened to my concerns.” (family caregiver)
Interprofessional and transmural collaboration with the GP as coordinator of care
Analyses of the logbooks of the PHC team show that for most patients, the GP was only contacted once by a nurse of the PHC team, namely when palliative home care was initiated, to let the GP know that the PHC team was introduced to the patient. This contact was always by telephone. Only for a few patients the GP was contacted more regularly, mostly when the patient deteriorated and was in the terminal phase of life or when medication had to be adjusted. GPs therefore said that it was difficult to take up their responsibility in being the coordinator of the care trajectory. The PHC team rarely contacted the oncologist directly because they did not want to pass-by the GP.
Interviews with GPs and oncologists and the focus group with the PHC team showed that PHC teams evaluated contact with the GP as unneeded when a patient was stable, whilst GPs reported that they would have liked to receive a short report after each visit from the PHC team. The interviews also revealed that GPs as well as nurses of the PHC team were sometimes difficult to reach by telephone resulting in suboptimal interprofessional communication and collaboration. Furthermore, the majority of the GPs mentioned in the interviews that they preferred being the communicator between the PHC team and the oncologist, whilst all oncologists preferred to receive information directly from nurses of the PHC team so that they could react immediately.
Based on the feasibility and acceptability of the intervention components, we made suggested changes to the EPHECT intervention which are shown in table 5.
Preliminary effectiveness of the EPHECT intervention
Table 6 and table 7 show results of preliminary effectiveness of the EPHECT intervention on quality of life, mood and satisfaction with care. No significant deterioration nor improvement over time was observed for any questionnaire scales and subscales. Initial scores of family caregivers on the anxiety scale were high and remained high during the intervention.
Patients’ and family caregivers’ perceived effects of the EPHECT intervention
The first visits of the PHC team were mainly used to build up a relationship with the patient and the family caregiver. Although the health condition of most patients was stable when the PHC team first visited them, patients and family caregivers evaluated the visits as positive. They reported in the interviews that having the support of the PHC team whilst receiving chemotherapy resulted in feelings of safety and trust. Especially family caregivers felt safe because they knew who they could turn to when their beloved one’s condition would deteriorate.
“You’re not alone anymore, it comforts me that I know where I have to go to if I need someone or support.” (family caregiver)
Quality of life
Almost all patients reported that the EPHECT intervention had a positive effect on their quality of life by interventions done or advised by the nurse of the PHC team to relieve discomfort and to optimize their symptom management.
Communication between patient and family
Some patients and family caregivers felt that the nurse facilitated conversations, especially when they were not used to talk to their partner or family about their worries. One oncologist said in the interview that the EPHECT intervention was of great value for a patient and her family because it brought the family together and facilitated communication about the dying process.
“This study really had an effect on that family. Because of your support, they have learned to communicate and they have grown more towards each other.” (oncologist)
Empowerment and advance care planning
Some patients mentioned that the visits of the nurse of the PHC team helped them in reflecting on their wishes and needs and in discussing them with other professional caregivers. Two oncologists also reported that they had the feeling that patients who participated in the EPHECT intervention became more assertive in stating their wishes for future care and communicating their concerns than they were before the start of the intervention.