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 final sample of 1,042 patients (Fig. 1).
Patients who had been extent from E-box were significantly older (p < 0.0001), more likely to be females (p = 0.0005) and having lung cancer (p < 0.0001), and less likely to have melanoma (p < 0.0001). No differences were found between non-respondents and respondents (see supplementary file 1).
Table 1 shows the characteristics of the respondents who reported not being in follow-up (n = 376) compared to those who reported being in follow-up (n = 1042). The distribution of diagnoses differed significantly (p < 0.0001) and patients with colon and rectum cancers, melanoma and uterus cancer reported more often not being in follow-up.
Table 1
Comparison of self-reported characteristics of patients who reported being in follow-up and those who reported not being in follow-up
| | Respondents not in follow-up (n = 376) N (%) | Participants in follow-up* (n = 1042) N (%) | P-value |
Gender | Female Male | 232 (62) 144 (38) | 598 (57) 444 (43) | 0.1457 |
Age (mean) | | 68 yrs | 67 yrs | 0.0454 |
Age (years) | 20–49 years 50–59 years 60–69 years 70–79 years 80 + | 23 (6) 52 (14) 126 (34) 122 (32) 53 (14) | 85 (8) 154 (15) 369 (35) 339 (33) 95 (9) | 0.0740 |
Diagnosis** | Breast cancer Prostate cancer Colon and rectum cancer Melanoma Bladder and urinary cancer Brain and central nervous system cancer Uterus cancer Lung cancer (including trachea) Ovarian and fallopian tube cancer, etc. Multiple myeloma | 38 (10) 46 (12) 60 (16) 61 (16) 14 (4) 3 (1) 87 (23) 13 (4) 26 (7) 28 (7) | 144 (14) 126 (12) 120 (12) 121 (12) 68 (7) 17 (2) 58 (6) 133 (13) 125 (12) 130 (13) | < 0.0001 |
Time since diagnosis | 0–2 years 2–3 years 3–4 years 4–5 years > 5 years and more Missing | 19 (5) 111 (30) 107 (29) 89 (24) 40 (11) 10 (3) | 70 (7) 330 (32) 307 (30) 231 (22) 85 (8) 19 (2) | 0.416 |
Treatments received*** | Surgery | 311 (83) | 760 (73) | < 0,001 |
Radiation therapy | 76 (20) | 313 (30) | < 0,001 |
Chemotherapy | 111 (30) | 482 (46) | < 0,001 |
Bone marrow and stem cell transplantation | 10 (3) | 57 (6) | 0,028 |
(Anti) hormone therapy | 21 (6) | 132 (13) | < 0,001 |
Immune therapy | 21 (6) | 71 (7) | 0,407 |
Experimental treatment | 17 (5) | 76 (7) | 0,063 |
Other treatments/not clearly defined | 10 (3) | 51 (5) | 0,067 |
No treatment | 17 (5) | 34 (3) | 0,261 |
Deleted (not a treatment or not clearly defined) | 7 (2) | 28 (3) | |
Missing | 4 (1) | 15 (1) | |
Has the cancer spread? | No | 317 (84) | 774 (74) | < 0.001 |
Yes, to the lymph gland | 11 (3) | 87 (8) | |
Yes, to other organs | 14 (4) | 63 (6) | |
Not relevant | 1 (0) | 11 (1) | |
I don’t know | 27 (7) | 97 (9) | |
Missing | 6 (2) | 10 (1) | |
Has the cancer recurred after you have been told you were cancer free? | No | 304 (81) | 739 (71) | < 0.001 |
Yes | 18 (5) | 96 (9) | |
I don’t know | 42 (11) | 175 (17) | |
Missing | 12 (3) | 32 (3) | |
Marital status | Married/cohabiting | 254 (68) | 749 (72) | 0.216 |
In a relationship (living alone) | 14 (4) | 37 (4) | |
Divorced/single/widow(er) | 73 (19) | 197 (19) | |
Missing | 35 (9) | 59 (6) | |
Children living at home | Yes | 36 (10) | 116 (11) | 0.653 |
No | 176 (47) | 516 (50) | |
Missing | 164 (44) | 410 (39) | |
Country of birth | Denmark (including Greenland and The Faroe Islands) | 329 (88) | 942 (90) | 0.650 |
Other countries | 12 (3) | 40 (4) | |
Missing | 35 (9) | 60 (6) | |
Education | Primary school | 66 (18) | 166 (16) | 0.664 |
High school | 11 (3) | 36 (4) | |
Skilled worker | 95 (25) | 245 (24) | |
Further education (3 years or less) | 42 (11) | 153 (15) | |
Shorter theoretical education (1–4 years) | 89 (24) | 265 (25) | |
Higher education (< 5 years) | 33 (9) | 106 (10) | |
Don’t know/not relevant | 4 (1) | 13 (1) | |
Missing | 36 (10) | 58 (6) | |
Current employment | Full time | 62 (17) | 180 (17) | 0.235 |
Part time | 25 (7) | 100 (10) | |
Unemployed | 8 (2) | 10 (1) | |
Absent from work owing to illness | 10 (3) | 40 (4) | |
Old age pension | 222 (59) | 606 (58) | |
Early retirement pension | 12 (3) | 42 (4) | |
Other/student | 1 (0) | 9 (1) | |
Missing | 36 (10) | 55 (5) | |
* Patients returning questionnaire, answering at least 1 CPEQ item, and reporting to be attending follow-up. Population included in the analysis. |
** Diagnoses based on data from the Danish Cancer registry |
*** Can add to more than hundred, since more answers were possible |
There were significantly more patients in follow-up where the cancer had spread (14% vs. 7%) or the cancer had recurred (9% vs. 5%).
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 final 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.
Table 2
Frequencies (%) of answers to the items assessing levels of, possibilities for and value of empowerment (n = 1042)
PART A – LEVELS OF EMPOWERMENT (EMPOWERMENT OUTCOMES) - THE INTERACTIONAL COMPONENT |
Knowledge about context | 1. Are you in cancer follow-up (previously called control)? | Yes 100 | No 0 | | | | Don’t know 0 | Missing 0 |
2. Where does your follow-up take place? | Hospital 92 | GP 6 | Medical Specialist 3 | | Other 0 | Don’t know 2 | Missing 1 |
16. Do you know how to check your information in your electronic medical record? | Yes 68 | No 26 | | | | Not relevant 3 | Missing 2 |
Knowledge of resources, information, and possibilities of navigation. | 3. Do you experience that there is a plan for your follow-up (such as a plan for time, place, frequency, and content of the follow-up visits)? | Not at all 3 | To a low degree 3 | To some degree 9 | To a high degree 36 | To a very high degree 47 | Not relevant 1 | Missing 1 |
Do you know… 14. …who to contact, if you have any doubts regarding your health? | 2 | 3 | 16 | 33 | 43 | 1 | 2 |
15. …how to get additional help outside the healthcare system if you need it (e.g. psychological help, rehabilitation, alternative treatment, patient associations, The Danish Cancer Society etc.)? | 12 | 14 | 24 | 21 | 17 | 10 | 2 |
In relation to your cancer, do you know… 17. …where to find information about the illness, treatment and care? | 6 | 10 | 30 | 32 | 18 | 4 | 2 |
18. …in what situations to contact your doctor/hospital? | 4 | 7 | 22 | 40 | 24 | 2 | 2 |
19. Do you know what to pay attention to regarding the medicine you are taking (such as effects, side-effects, combination with other medicine, etc.)? | Not at all 5 | To a low degree 5 | To some degree 16 | To a high degree 20 | To a very high degree 13 | Not relevant/ I’m not taking any medicine 39 | Missing 2 |
Security and satisfaction | 4. Are you satisfied with the plan, which has been made for your follow-up (such as a plan for time, place, frequency, and content of the follow-up visits)? | Not at all 1 | To a low degree 2 | To some degree 12 | To a high degree 38 | To a very high degree 41 | Not relevant/ We haven’t discussed a plan 4 | Missing 1 |
5. Are you satisfied with the point in time that the plan for your follow-up was made? | Too early 1 | Appropri-ate time 88 | Too late 1 | | | Not relevant/ We haven’t discussed a plan 8 | Missing 2 |
Do you feel at ease with… 6. …the frequency of your appointments with the healthcare staff during your follow-up? | Not at all 1 | To a low degree 3 | To some degree 13 | To a high degree 43 | To a very high degree 37 | Not relevant 1 | Missing 2 |
7. …the content of your follow-up? | 1 | 4 | 14 | 43 | 35 | 1 | 2 |
Awareness of choices and possibilities | During your follow-up have you or the healthcare professionals made decisions regarding… 8. …treatment (either preventive or actual cancer treatment)? | Not at all 30 | To a low degree 4 | To some degree 9 | To a high degree 19 | To a very high degree 13 | Not relevant 22 | Missing 4 |
9. …treatment of side effects or late complications? | 31 | 11 | 13 | 12 | 7 | 22 | 5 |
10. …types of tests or examinations to be made at follow-up visits? | 21 | 7 | 12 | 22 | 16 | 17 | 6 |
11. …rehabilitation? | 34 | 7 | 9 | 8 | 5 | 33 | 4 |
12. …reconstructions after your treatment? | 36 | 4 | 3 | 3 | 2 | 45 | 7 |
13. …practical conditions relating to your follow-up (such as time/place/frequency)? | 22 | 5 | 13 | 21 | 14 | 19 | 6 |
PART A – LEVELS OF EMPOWERMENT (EMPOWERMENT OUTCOMES) - THE INTRAPERSONAL COMPONENT |
Perceived ability to understand and handle information | Do you feel capable of… 20. …understanding the information you have received from the healthcare staff (both verbally and in writing)? | Not at all 1 | To a low degree 1 | To some degree 15 | To a high degree 49 | To a very high degree 30 | Not relevant/ I haven’t received any information material 4 | Missing 2 |
21. …identifying what parts of information material from the healthcare system is relevant to you in your follow-up? | 1 | 3 | 20 | 40 | 27 | 8 | 2 |
Do you feel capable of… 22. …understanding the information regarding illness, treatment and care that you find on your own? | Not at all 1 | To a low degree 4 | To some degree 27 | To a high degree 35 | To a very high degree 18 | Not relevant 13 | Missing 4 |
23. …assessing the quality of the information material you find on your own? | 2 | 6 | 32 | 29 | 13 | 15 | 4 |
Perceived ability to practice self-care | Do you feel capable of… 24. …doing what is good for your body? | 1 | 5 | 25 | 40 | 21 | 4 | 4 |
25. …doing what is good for your mental wellbeing? | 2 | 8 | 25 | 36 | 20 | 6 | 4 |
26. …managing potential physical side-effects/late complications from your illness/treatment? | 3 | 9 | 31 | 25 | 11 | 17 | 4 |
27. …managing potential mental side-effects/late complications from your illness/treatment? | 4 | 12 | 28 | 23 | 12 | 17 | 4 |
28. …watching out for symptoms being signs of recurrence or worsening of your cancer illness? | 3 | 9 | 25 | 33 | 24 | 4 | 4 |
Perceived ability to interact with health care professionals | Do you feel capable of… 29. …assessing what you need from the healthcare professionals? | 3 | 7 | 28 | 31 | 18 | 8 | 5 |
30. …telling the healthcare professionals about your most important challenges? | 3 | 7 | 22 | 31 | 21 | 10 | 5 |
31. …participating in decisions regarding your health and treatment, if necessary? | 2 | 5 | 18 | 40 | 26 | 6 | 4 |
PART B - EMPOWERMENT FACILITATORS: ENABLEMENT FROM THE HEALTH CARE SYSTEM |
Adequate information and support | Have the healthcare professionals… 32. …explained things in an understandable language? | Not at all 0 | To a low degree 2 | To some degree 15 | To a high degree 43 | To a very high degree 35 | Not relevant/ I haven’t had a need 1 | Missing 4 |
33. …, in your perception, given honest responses? | 0 | 1 | 8 | 46 | 39 | 1 | 4 |
36. …told you about relevant patients associations? | 15 | 14 | 17 | 19 | 16 | 14 | 5 |
37. …given you written information that matched your situation and needs? | 8 | 9 | 19 | 29 | 21 | 8 | 5 |
38. …beforehand informed you about the side effects/late complications you have experienced (both orally and written)? | 7 | 11 | 19 | 26 | 19 | 13 | 5 |
40. …given you adequate supervision on how to take care of yourself at home (such as advice on diet, exercise and sleep)? | 11 | 11 | 19 | 24 | 15 | 15 | 5 |
41. …given you adequate information on how you can expect your cancer illness will affect your daily life? | 12 | 14 | 19 | 20 | 14 | 15 | 6 |
Being listened to and taken seriously | Have the healthcare professionals… 34. …been accommodating to your questions? | 1 | 2 | 9 | 44 | 40 | 1 | 4 |
35. …been accommodating to your experiences? | 1 | 3 | 13 | 40 | 34 | 5 | 5 |
39. …helped you ease/treat your side effects/late complications? | 7 | 10 | 18 | 19 | 13 | 27 | 6 |
42. …supported you in participating in decisions? | 9 | 10 | 18 | 22 | 15 | 21 | 6 |
43. Were the matters you felt you needed to discuss covered in your conversations with healthcare professionals? | Not at all 2 | To a low degree 6 | To some degree 22 | To a high degree 38 | To a very high degree 21 | Not relevant 4 | Missing 7 |
Support of relatives | Have you missed that your relatives… 44. …were better prepared for what they could expect? | 42 | 13 | 16 | 7 | 3 | 13 | 5 |
45. …were listened to? | 37 | 12 | 12 | 13 | 6 | 15 | 5 |
46. …had more opportunities to talk to the healthcare professionals? | 37 | 13 | 11 | 12 | 5 | 16 | 6 |
PART A – EMPOWERMENT OUTCOMES - THE BEHAVIORAL COMPONENT |
Participating in decision making | During your follow-up, have you… 47. …had conversations with the healthcare professionals regarding your needs and wishes for your follow-up? | Not at all 17 | To a low degree 11 | To some degree 19 | To a high degree 15 | To a very high degree 7 | Not relevant/ I haven’t had a need 23 | Missing 7 |
48. …been involved in decisions (such as decisions on treatment of side effects or late-complications, preventive care or tests)? | 16 | 9 | 16 | 16 | 8 | 28 | 7 |
49. …declined recommended medicine or treatment because you believe it wasn’t good for you? | 44 | 4 | 5 | 4 | 4 | 32 | 7 |
59. During your follow-up, have you faced decisions that you wished the healthcare professionals would make for you? | Not at all 43 | To a low degree 9 | To some degree 8 | To a high degree 3 | To a very high degree 2 | Not relevant 29 | Missing 6 |
Active communication and collaboration with the healthcare professionals | During your follow-up… 50. …have you found solutions to your medical challenges in collaboration with the healthcare professionals? | Not at all 17 | To a low degree 10 | To some degree 16 | To a high degree 13 | To a very high degree 7 | Not relevant/ I haven’t had a need 30 | Missing 7 |
51. …have you told the healthcare professionals how you feel? | 4 | 6 | 16 | 36 | 23 | 10 | 6 |
52. …have you asked the healthcare professionals questions if you had doubts about care, treatment or illness? | 6 | 6 | 15 | 30 | 20 | 16 | 7 |
53. …have you contacted the healthcare professionals because you had questions or concerns? | 16 | 10 | 14 | 20 | 14 | 20 | 7 |
54. …did you plan what you wanted to talk to the healthcare professionals about before your consultations? | 7 | 6 | 18 | 28 | 21 | 13 | 7 |
58. During your follow-up, have you told the healthcare professionals if you did not agree with them? | Not at all 16 | To a low degree 8 | To some degree 11 | To a high degree 10 | To a very high degree 4 | Not relevant/ I haven’t disagreed with them 45 | Missing 6 |
Actively seeking additional support | During your follow-up, have you… 55. …actively made an effort to receive referrals to relevant professionals (such as psychologists, physiotherapists, rehabilitation)? | Not at all 21 | To a low degree 7 | To some degree 9 | To a high degree 13 | To a very high degree 11 | Not relevant/ I haven’t had a need 34 | Missing 7 |
56. …had contact with other people who have or have had cancer to exchange experiences? | 25 | 11 | 16 | 11 | 11 | 19 | 7 |
57. …actively searched for other information than the information you received from the healthcare professionals? | 22 | 12 | 18 | 12 | 11 | 18 | 7 |
PART C – THE VALUE OF EMPOWERMENT |
| Is it important to you… 60. …to have influence on the planning of your follow-up (such as a plan for time, place, frequency, and content of the follow-up visits)? | Not at all 7 | To a low degree 13 | To some degree 20 | To a high degree 25 | To a very high degree 18 | Not relevant 11 | Missing 6 |
61. …to be prepared for how your health could affect your daily life after ended treatment? | 3 | 4 | 13 | 33 | 25 | 15 | 6 |
62. …that the healthcare staff takes time to talk to you about your daily life? | 4 | 7 | 16 | 31 | 21 | 15 | 6 |
63. …to know the details about your health, possible treatments and medicine? | 2 | 3 | 10 | 32 | 33 | 13 | 6 |
64. …to know about the decisions being made about your care and treatment? | 2 | 3 | 6 | 31 | 36 | 15 | 7 |
65. …to have an influence on the decisions being made about your care and treatment? | 4 | 5 | 12 | 27 | 30 | 15 | 7 |
66. …to have an influence on what tests you should have done? | 9 | 9 | 15 | 24 | 24 | 13 | 7 |
67. …that the healthcare professionals support you in doing things that you believe can improve your wellbeing (such as changes in diet, exercise etc.)? | 4 | 5 | 16 | 26 | 23 | 19 | 7 |
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 satisfied 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 confident 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: Confidence 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 confident 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 confident 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 fifth 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 late complications (item 38: 18%), supported them in participating in decisions (item 42: 19%), or helped ease and treat their side effects and late complications (item 39: 17%).
Around a quarter of the patients reported that HCPs had not at all/to a low degree told them about relevant patient associations (item 36: 29%), given adequate supervision on how to take care of one-self at home (item 40: 22%) or how to expect the cancer illness would affect their daily life (item 41: 26%).
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 influence on the planning of their follow-up (item 60) or the tests they should have done (item 66).