This study evaluated if there are differences within the health-related QoL of patients cared for by GPs who participated in a palliative training course offered by GPs (PAMINO) compared to patients of other GPs. In our study sample, patients did not report any differences in their QoL and care as measured by QLQ-C15-PAL and POS. The study suggests that PAMINO training makes no noticeable difference to the quality of care for patients between comparable groups of GPs.
We tried to include as many GPs and patients as possible, but did not reach our targeted sample size. GPs either did not care for enough eligible patients or did not participate due to time constraints. There were enough practices participating in the study (n = 90), but only half of them included patients. Mostly, there were less eligible patients in the practices than expected: there were not as many cancer patients as we assumed for our sample size calculation. Therefore, this study has the character of a pilot study and conclusions need to be drawn cautiously. Although our study is underpowered, it nevertheless describes the quality of life in palliative patients cared for by GPs.
Patients considered their QoL to be moderately high. Not surprisingly, QoL was much lower than in the general German population
, but higher than in comparable palliative care populations
Additionally, GPs in general delivered high-quality care in the patients’ view. Compared to patients cared for in nursing homes
, they reported better care outcomes. The patients of the German POS validation study
, who were mostly cared for in palliative care units in hospital, also reported worse care outcomes than our study population.
As was to be expected, both measures correlated highly showing the high interdependence of care outcomes and health-related quality of life as perceived by patients.
Although our study failed to reveal statistical significant differences within the QoL of patients, it does not mean that the initiative had no impact at all. Unlike non-participating doctors, GPs participating in this voluntary training might gain valuable knowledge and skills in caring for palliative patients, which are of increasing importance in the future. Furthermore, we did not evaluate the training from the GPs’ point of view, for which a longitudinal design with focussing on GPs perceptions and attitudes (asking GPs before and after the training) would have been more appropriate. Furthermore, our study sample mostly consisted of middle-aged GPs with long years of experience. The way they care for patients was perhaps not influenced by training but by learning on the job. These issues should be taken into consideration within further research.
GPs had to include eligible patients from their practice in the study. Although there were inclusion criteria, the recruitment of patients was prone to a selection bias, since GPs decided whom they thought eligible. Patients had to be progressed enough in their cancer trajectory and still be able to participate and to fill out the questionnaires. Those closer to the end of life were probably less often approached for study purposes leading to a generally healthier patient sample. Nonetheless, included patients could be followed-up during the study period up to the point of disease progression. The fact, that more than half of the patients needed help in filling-out the questionnaires at the last study assessment, emphasizes their needs and more severe condition.
A major limitation of the study is the choice of the control group. GPs participating in this study were interested in palliative care, independent of whether they did attend further training or not. So, the GPs in the control group were equally eager to deliver high-quality care and to help patients maintaining a high quality of life. But, since GPs not interested in palliative care tend to let other medical professionals (specialists, home care services, hospitals) take care of the patients, a control group providing mere basic care is probably hard to find.
The study was an observational study without further intervention. Still, there might have occurred an observation bias, since patients and GPs alike were made alert to specific aspects of care that they were asked about in the questionnaires and documentations. An influence of the study on the care delivered, and thus on patients’ quality of life, cannot be ruled out.
We might have conducted a study with the training as intervention and pre-post assessments. Such a before and after study would probably not be able to detect the effect of the training either. Patients in a palliative care situation naturally and unpredictably change over (sometimes a very short) time. It is very difficult, for all health professionals involved, to predict the illness trajectory of a single patient. For a study, we need to find the balance between getting important results and too much burden on patients and caregivers.