Methods
This dataset was collected during a multicentre cross-sectional study, aimed to identify the priorities of patients with advanced disease and their informal caregivers. Participants were recruited from May till September 2018 at various departments in 2 regional and 3 university hospitals in the Czech Republic. Inclusion criteria for patients were age 18+, cognitive ability to participate, and patients’ life expectancy less than 1 year estimated by their physicians using the surprise question (11). Eligible patients were invited to participate during hospital admission by their physicians, who informed them about the purpose of the study. Recruitment of relatives happened during their hospital visit and they were eligible to participate if they were related to a person fulfilling the patient inclusion criteria. All participants provided a written consent and the study was approved by research ethics committee at each data collection site.
Data were collected by questionnaire which was designed specifically for this study and was based on findings from a non-published qualitative pre-study conducted during the IMPAC project, focused on exploring the priorities of patients with advanced cancer. The results of this pre-study informed the development of the final questionnaire consisting of 40 different factors. Participants of this questionnaire study were asked to rank the factors by their importance on 5-point Likert scale. Demographic factors and relationship of relatives to the patients were also collected. Additionally, in an open-ended question participants were asked to state their main motivation for agreeing to participate in the study and to evaluate how their felt about their experience on 5-point Likert scale (Very interesting, Interesting, I did not mind, Unpleasant, Very unpleasant). Patients had the questionnaire administrated by trained medical staff while relatives completed the questionnaire by themselves
Analysis
Distribution of data was analysed using Kolmogorov-Smirnov test which found that the distribution was not normal, therefore for further analysis non-parametric methods were used (Mann-Whitney test, Spearman´s correlation). Statistical analysis was conducted in IBM SPSS 26.
Written answers to the open-ended question were analysed by two researchers independently (KP, KV) using thematic analysis approach (12). Verbatim responses were extracted and analysed separately for patients and relatives.
Results
The sample consisted of 170 patients and 108 relatives, but 9 respondents (3 patients, 6 relatives) were excluded from the analysis because they did not complete the question evaluating their research experience. Demographics of the final sample (N=269) are reported in Table 1.
Half of the sample (53 %) did not mind participating in this study and for almost 40 % it was an interesting or very interesting experience. Detailed information is provided in Table 2.
The difference in answers of patients and relatives was not significant (p= 0.52). In the group of patients, the answers did not correlate with age (R= 0.1; p= 0.23) and did not differ based on gender (p= 0.17), being religious (p= 0.5), education (p= 0.19) or the level of prognostic awareness (p= 0.5). Similarly, in the group of relatives, the answers did not correlate with age (R= 0.1; p= 0.3) and did not differ based on gender (p= 0.25), education (p= 0.5) or being religious (p = 0.14). The answers differed based on the type of diagnosis (p= 0.04) because patients with noncancer diagnosis evaluated their participation positively (Median= 4) versus cancer patients (Median= 3).
Open-ended question
The open-ended question about participants´ motivation was answered by 78 patients and 42 relatives.
In the group of patients following five themes were identified: Improving care, Supporting research, Expressing own opinion, Trust, Opportunity to talk. In the relative’s group there were four analytical themes, which were identical to the themes in patient´s group (Improving care, Supporting research, Express own opinion, Trusting relationship). These findings indicate that patient and relatives are motivated by similar aspects. Therefore, the results of the analysis are presented together.
Theme 1: Improving care
Improving health care for others was a major motivation for participation in both groups of respondents. Patients and relatives had desire to help to improve not only medical care but also the relationship and communication between patients and physicians and to help others in similar situation:
(I have) a great interest to improve care for other patients. (Patient)
Theme 2: Supporting research
Patients and relatives expressed a strong wish to support research focused on topic which they sought as important and interesting. The respondents believed that research is necessary for developing knowledge in this field and their participation in research is thus meaningful and important.
I like to help, and I think that the research is meaningful. (Patient)
Theme 3: Expressing own opinion
The participation in research was also motivated by the wish to express their opinion. Being able to express own feelings and experiences was acknowledged as an important aspect of medical care and respondents felt that it is important for doctors to know what they think.
It is important to know the opinions of the closest people of the patients. (Relative)
Theme 4: Trusting relationship
Patients and relatives were motivated to participate in research because they were approached by a health care staff whom they trusted and have already developed relationship with. It was also an opportunity to express their gratitude for the care they received.
I was approached by the doctor who is taking an excellent care of my mother. (Relative)
Because I trust you. (Patient)
Theme 5: Opportunity to talk
This theme was identified only in the patients´ group. Participation in research gave patients an opportunity to talk with somebody and to think about topics they otherwise would not. The desire to speak with someone was driven by the sense of loneliness and by the stereotype of their days while staying at hospital. Answering the questionnaire helped them to explore their own feelings and opinions and gave them an opportunity to get new experience.
I am alone at the hospital room; therefore, I am glad I can speak with somebody. Maybe I will learn something new. (Patient)