Patient Empowerment Among People Attending Cancer Follow-Up – Results from a Nationwide Questionnaire Survey

Purpose To investigate levels of empowerment, possibilities for empowerment and perceived importance of empowerment among Danes in cancer follow-up. Methods From nation-wide registers a randomly selected group of people diagnosed with one of ten different cancer diagnoses between one and ve years ago were invited to complete the newly developed ‘Cancer Patient Empowerment Questionnaire’ (CPEQ). Respondents who reported that they were in a follow-up program were included in the analysis. Frequencies of answers to the items in the questionnaire were calculated. complications and symptoms.

The CPEQ was speci cally developed for this study and aims at assessing empowerment among cancer patients in follow-up. The development of the CPEQ was based on theories by Zimmerman [17] and Tengland [18] de ning empowerment as "having control over the determinants of one's quality of life" [18]. In the context of health-related control, an empowered person can be seen as someone who "believes he or she is capable of understanding and in uencing the relevant context/situation (intrapersonal component), understands how the healthcare system works and how to act to achieve desired outcomes (interactional component), and engages in relevant types of behaviors to exercise control (behavioral component)" [17,19]. Additionally, the CPEQ is based on the assumption that empowerment is a relational concept and therefore also assesses the healthcare professionals' support of empowerment [18,19]. Finally, the CPEQ assess the degree to which patients nd different empowerment manifestations important in their follow-up [18,19].
The questionnaire was developed based on patient interviews [20], a review of empowerment [21], and reviews of empowerment questionnaires [19]. The developmental process has been described elsewhere [16].
The CPEQ consists of 67 items with categorial response options and 11 open ended questions and covers ve different components of empowerment: i) interactional (patients' insight and ability to navigate), ii) intrapersonal (patients' perceived ability to handle necessary tasks and obstacles), iii) behavioral (patients' actions in relation to above mentioned), iv) enablement (health care professionals' (HCP) enablement in relation to above mentioned) and v) value (patients' perception of the value of empowerment in their follow-up) [16].

Data-collection
The questionnaire was distributed to patients via a digital mailbox called 'E-box' [E-boks] in November and December 2018. E-box is a mandatory secure electronic mailbox linked with people's unique civil registration numbers through which the public authorities communicate with the Danish population. One can become extent from E-box if one is having cognitive or physical disability, lack of access to internet, language barriers, or living abroad [22].
The email invitation included a personalized link directing patients to an online version of the survey questionnaire in the software system SurveyXact. Nonrespondents received a reminder in E-box after approximately 14 days.

Data analysis
Participants and non-participants were compared with t-test (age) and chi-square test (gender, diagnosis, spreading/recurrence of cancer, marital status, children, country of birth, education, employment).
Frequencies for all items in the CPEQ were calculated using SPSS.

Study population
From the Register we received a list of 3,416 patients. Three had passed away before receiving the questionnaire, 757 were exempt from the service by which we were to send out the questionnaire (E-box) and 19 informed us that they did not have cancer. Thus, 2,637 patients were eligible for the study and received the questionnaire and 1,418 patients (54%) responded. Subsequently, 376 participants were excluded from the analysis because they reported not being in follow-up, resulting in a nal sample of 1,042 patients ( Fig. 1).
There were no differences between patients who reported being in follow-up vs. not in follow-up regarding the collected sociodemographic variables (i.e., gender, marital status, children, education, employment, etc.).
In the nal sample, more than half were women (57%) and the mean age was 67 years. Most patients had been diagnosed between two and four years ago (62%), the majority were born in Denmark (90%), were married or living with a partner (72%) and had retired (58%). Almost half of the participants were either educated as skilled workers (24%) or had a short theoretical education (1-4 years) (25%).
Empowerment Table 2 presents the distribution of the 1042 cancer participants' answers to the CPEQ items. The interactional component: Awareness and knowledge Around 80% reported that they to a high degree experienced that there was a plan for their follow-up (item 3: 83%), were satis ed with the plan (item 4: 79%), and felt at ease with both the frequency of appointments (item 6: 80%) and the content of the follow-up (item 7: 78%).
Not all patients felt con dent when it came to knowledge about accessing information. E.g. twenty-six percent did not know how to check their information in their electronic health record (item 16) or reported not knowing how to get additional help outside the healthcare system (item 15).
Regarding patients' awareness of decisions in their follow-up (items 8-13), large proportions of patients had not (not at all/to a low degree) experienced decisions being made regarding treatment (either preventive or actual cancer treatment) (34%), treatment of side effects or late complications (42%), types of tests or examinations (28%), rehabilitation (41%), reconstructions after treatment (40%), and practical conditions relating to the follow-up (27%).

The intrapersonal component: Con dence in own abilities
Sixty-six percent felt they were capable of participating in decisions regarding their health and treatment to a high degree (item 31). Patients reported being more con dent when it came to understanding and assessing information material received from HCPs compared to the information materials they found themselves. Thus, seventy-nine percent reported to a high degree feeling capable of understanding the information they received from the HCPs (item 20) and 67% felt capable of identifying what parts of the information material was relevant to them (item 21). Whereas only around half of the patients reported to a high degree feeling capable of understanding (item 22: 53%) and assessing (item 23: 42%) the information they found on their own. Some patients did not feel con dent about selfcare. Eleven to 16% reported not at all/to a low degree feeling capable of managing physical side-effects, mental side-effects, or watching out for symptoms related to signs of recurrence or worsening of their cancer illness (items 26-28).

The behavioral component: Empowerment actions
Around half of the sample reported to a high degree having told HCPs how they felt (item 51: 59%), that they had asked the HCPs questions if they had doubts (item 52: 50%), and that they planned what they wanted to talk to HCPs about before consultations (item 54: 49%).
On the other hand, around a quarter of the patients reported that they had not at all/to a low degree been involved in any decisions during their follow-up (item 48: 25%) or had conversations with the HCPs regarding their needs and preferences for their follow-up (item 47: 28%).
In addition, 27% of the sample reported not at all/to a low degree having found solutions to medical challenges in collaboration with HCPs (item 50), and 24% did not tell the HCPs if they disagreed with them (item 58).
Regarding additional support, 28% of the patients reported that they had not made an effort to receive referrals to other relevant professionals at all/to a low degree (item 55), 36% had no contact with other cancer patients to exchange experiences (item 56) and 34% did not search actively for other information than the one received from HCPs (item 57).
Enablement from the healthcare system: Support from HCPs Many patients felt HCPs explained things well and listened to them. More than 70% responded that HCPs to a high degree had explained things in an understandable language (item 32: 78%), given honest responses (item 33: 85%), and were accommodating to their questions (item 34: 84%) and experiences (item 35: 74%).
However, patients also reported some lack of adequate information and support from HCPs. Almost a fth of the patients responded that HCPs not at all/to a low degree gave written information matching their situation and needs (item 37: 17%), had informed them beforehand on experienced side effects and The value of empowerment Two thirds of the patients reported that it was very important to them ('to a high degree') to have knowledge about details on their health, possible treatments and medication (item 63: 65%), and the decisions being made about their care and treatment (item 64: 67%).
The value of other aspects seemed less important. Forty-three percent and 48%, respectively, reported that it was important to them to a high degree to have in uence on the planning of their follow-up (item 60) or the tests they should have done (item 66).

Discussion
This nation-wide study is unique, as it included a large and randomly selected group of people in follow-up for their cancer and assessed the level of empowerment using the newly developed questionnaire CPEQ. This is one of few studies investigating the concept of empowerment in cancer follow-up, whereas previous studies have investigated cancer patients' needs and experiences in follow-up (e.g. [3,23]) or needs and experiences with cancer care in general (e.g. [24]). Some of these surveys did cover elements related to empowerment, but not the full concept as covered in this study.
The participants in this survey reported generally feeling empowered in many areas. They also reported positive experiences with their follow-up. This is somewhat contradictory to previous studies of Danish cancer follow-up which suggest that far from all patients are satis ed with their follow-up [3,25]. E.g., in one study, 51% reported not being adequately involved in decisions regarding their follow-up and 21% reported that they were being given responsibility for elements of their follow-up they considered to be the responsibility of the healthcare system [3].
Generally, patients in this study reported feeling quite knowledgeable when it came to understanding and navigating the health care context, as well as feeling at ease with the content, timing and way their follow-up was arranged. More than two thirds of the participants reported being con dent in handling their follow-up, especially with respect to understanding and assessing the information received from the HCPs or participating in decisions. Quite many of the respondents did not feel con dent, when it came to handling side-effects and late complications. Another study of cancer follow-up in Denmark has shown that despite around 75% of patients considering examination and treatment of side-effects and late complications of high importance, only around 10% of these patients reported that late complications had been part of their latest follow-up consultation [25]. It seems that more focus on treatment, information and support in relation to side-effects and late complication are warranted.
Only a few patients reported that they had been informed about relevant patient associations or had had contact with other patients. From an empowerment perspective this may be unfortunate, since several studies have found that participating in patient groups could support empowerment, both as an important source of information and via social and relational effects [30][31][32][33]. However, the topic of patient organizations and social networks should be presented carefully and is not relevant to anybody since as many as 36% of cancer patients have reported not having a need to talk to other cancer patients [34].
Patients felt less con dent when it came to knowing and articulating what they needed from the HCPs and 28% had not or to a low degree had conversations with HCPs regarding their needs and wishes for their follow-up. This could possibly be a problem, since one of the primary aims of the new follow-up programs is the co-creation of an individual plan for each patient, which should partly be based on the patients' articulation of their speci c needs and challenges [4]. Patients may not know or believe that they could impact the planning of the follow-up program.
When looking at the distribution of answers to most items in the questionnaire, the numbers were strikingly evenly distributed between the response categories. This stresses the fact that patients have very diverse experiences, needs and opinions when it comes to empowerment related processes, and that empowerment is not a one-size ts all. Since patients and their cancer trajectory can vary in so many ways, it might not come as a surprise that the experiences and needs in follow-up are just as diverse. Other studies among cancer patients in follow-up con rmed diversities in preferences and stress the need for an individual organization matching expectations [25,35].

Clinical implications
Based on the current study, it can be recommend for HCPs to further investigate what type of role(s) patients desire in their follow-up, since needs and expectations are very diverse [36]. Additionally, the results suggest that HCPs should have more focus on the treatment of side-effects and late complications, how patients' daily lives may be affected after treatment, and on creating awareness about the different decisions being made during followup.

Strengths and limitations
There were few differences when comparing respondents who attended follow-up and those who did not. However, some signi cant differences were found.
For example, more patients with uterus cancer reported not being in follow-up, which might be related to the fact that symptoms of uterus cancer are often SupplementaryFile1.pdf