The characteristics of the study group (n=16) which aimed at a broad representation of all diagnoses, are shown in Table 1. The survivors’ median age at interview was 39 years and they were interviewed in median 31.5 years after cancer diagnosis. 9 survivors were treated with radiotherapy in combination with chemotherapy and 7 survivors with chemotherapy alone.
Table 1. The characteristics of the survivors (n=16)
Sex (male/ female)
|
Current age (years)
Median (range)
|
Highest completed
level of education
|
Current
level of
employment
|
Age at diagnosis (years)
Median (range)
|
Time since diagnosis (years)
Median (range)
|
Any RTa
(y b /total)c
|
RTa to CNS (y b /total)c
|
6/10
|
39 (23-56)
|
Elementary school
1/16
Secondary school
10/16
University
5/16
|
Employed
11/16
Short term disability
compensation
1/16
Long term disability
compensation
3/16
Unemployed
1/16
|
7.19
+/- 4.7
(2-17)
|
31.5 ( 20-50)
|
9/16
|
8/16
|
a radiotherapy; b yes ; c total number
Survey results
Regarding their respective health status the majority of participants (15/16; 94%) graded their health/well-being as “fair” or greater (Fig. 1). 12 of the 16 participants (75%) had at some point in their lives been in contact with health care providers for reasons that they believed were linked to their childhood cancer treatment. In the 24 months prior to the study, the group had on average had 2.56 +/- 1.59 (median 2) health care visits. The type of medical specialists which the participants had visited in the last 24 months are shown in Table 2, left panel/panel A. The most visited specialist was the primary care provider (PCP) (68,8%) and the least visited was psychiatrist and gastrointestinal specialists (both 0 visits). Most participants reported that they felt that their needs had been taken seriously by the health care provider (less than fair (2), fair (1), good (7), excellent (4), no replies (2)). The detailed self-reported medical issues and perceived experiences are shown in Table 2, center and right panels/panels B and C.
Table 2
Self-reported medical problems and perceived survivorship experiences
A. Visit to a clinical specialist in the last 24 months (item 4) | n e | % | | B. Self-reported problems (item 5) | n | % | | C. Perceived experiences (item 7) | n | % |
PCP d | 11/16 | 68.8 | Memory | 5/16 | 31.3 | Fear of cancer reccurence | 8/16 | 50 |
Counselor | 4/16 | 25.0 | Learning | 5/16 | 31.3 | Feeling vulnerable | 3/16 | 18.8 |
Chiropractor | 2/16 | 12.5 | Attention | 4/16 | 25.0 | Diminished physical strength | 4/16 | 25.0 |
Physiotherapist | 2/16 | 12.5 | Growth hormone deficiency | 7/16 | 43.8 | Lacking enthusiasm | 3/16 | 18.8 |
Psychologist | 1/16 | 6.3 | Weight | 4/16 | 25.0 | Overwhelming enthusiasm | 0/16 | 0 |
Cardiologist | 4/16 | 25.0 | Fertility | 6/16 | 37.5 | School troubles | 4/16 | 25.0 |
Otolaryngologist | 3/16 | 18.8 | Physical activity | 6/16 | 37.5 | Fear of death | 4/16 | 25.0 |
Endocrinologist | 6/16 | 37.5 | Liver function | 0/16 | 0 | Change of body appearance | 4/16 | 25.0 |
Pulmonologist | 1/16 | 6.3 | Thyroid gland | 2/16 | 12.5 | Relationships changed | 4/16 | 25 |
Diabetes team | 2/16 | 12.5 | Pulmonary function | 2/16 | 12.5 | Attention deficits | 4/12 | 25 |
Nephrologist | 1/16 | 6.3 | Cardiac function | 3/16 | 18.8 | ”Impossible to work” | 3/16 | 18.8 |
Neurologist | 2/16 | 12.5 | Hearing loss | 6/16 | 37.5 | Feeling of gratitude | 5/16 | 31.3 |
Psychiatrist | 0/16 | 0 | Gastrointestinal function | 1/16 | 6.3 | No one understands me | 5/16 | 31.3 |
Gastrointestinal specialist | 0/16 | 0 | Depression | 3/16 | 18.8 | Private economic burden | 4/16 | 25 |
Other medical specialist | 2/16 | 12.5 | Anxiety | 3/16 | 18.8 | Difficulties with the public employment service | 4/16 | 25 |
| Fatigue | 5/16 | 31.3 | Difficulties with the National Insurance Agency | 1/16 | 6.3 |
Secondary malignancy | 2/16 | 12.5 | |
| Other | 2/16 | 12.5 | |
None | 1/16 | 6.3 |
d primary care provider; e number; |
Eight participants (50%) reported having received a treatment summary on paper, 6 reported not received (37.5%) and 2 (12.5%) were unsure. 14 reported being aware (n = 7), or partially aware (n = 7) of their personal follow-up recommendations, whereas 2 reported that they were unaware. During the present study, 4 (25%) had planned to contact the late effect clinic.
The overall response to the digital treatment summary, its appearance, and the value of the presented information, was positive with 100% of the participants grading it “very good” or “excellent” (Fig. 1). The participants deemed the appearance agreeable and reported that the content held a high value to them. Of the 16 participants, 6 expressed that they had suggestions for changes, whereas 10 did not. The changes that were suggested included explanations of medical terms and abbreviations primarily regarding the diagnosis, e.g. SNOMED, ICD10 and “recurrence”. It was expressed that the participants wanted headings and fields to be shown even when a particular treatment module was irrelevant to their medical history. Two participants expressed that personalized calls to action were lacking. Two participants reported they would view the summary once per month, and 2 reported once every 6 months (Fig. 2). The majority (12/16) of participants stated they would review the treatment summary if and when a need would arise.
With regards to the E health literacy scores 9/16 participants (56%) had a score higher than 20 (maximum 30 points) (Fig. 2). 7 participants reported agreement with the statements to the degree of very well or excellent (scores 4 or 5) on 5 or more of the 6 items. Out of the 6 items, the statement which received the highest average score of the participants was “I know how to find helpful health resources on the Internet” (4.06). The statement with the lowest score was “I know what health resources are available on the Internet” (3.06).
The E health literacy sum did not correlate with “age at diagnosis”, “time since diagnosis”, or “CNS radiotherapy”. It was however significantly correlated with sex (p = 0.022, CI :-13.6- -1.3) and the level of education (p = 0.003, CI: 3.9–14.6).
Focus Group Interview Results
In the analysis of the focus group interviews, the following themes and categories were identified. Quotes are shown as examples.
1. Theme: The Significance Of Information
Access
The survivors highlighted the value of having access to a extensively detailed treatment summary stating the risk of potential complications. Having knowledge could have an impact on their future health status, as not knowing may lead them to think that they can ignore the risk of complications. Some survivors brought up that they were not sure about knowing too many details as it may result in negative thoughts about the future.
If it doesn’t mention particular risks, you are inclined to think you are out of the woods. Evidently there are multiple things to be aware of.”
” Personally, I want it to state everything. Otherwise it may lead you to think you are not at a particular kind of risk, simply because the information is lacking. “
Trustworthiness
The survivors highlighted the feeling of relief when they read the treatment history and how this information could become available to them digitally. They expressed that they with access to a treatment summary no longer had to remember the details, nor repeat their history in contact with health care. This resulted in a feeling of safety.
It is always available; I don’t have to search for it.
To not have to search for the information, to not have to go on a wild goose chase to find a doctor when I have questions- which makes things easier for health care as well- to not have to hunt down the information
Further, they experienced trust when having access to data provided from professionals experienced in paediatric oncology and they stressed the importance of reliability of the information in order to feel secure.
” It is better to have a proper informative format, with proper sources and correct information. Much better than going to Google, or finding Wikipedia where sources are missing. A trustworthy source is important.”
The survivors experience of unclear or incorrect information, presented to them in the past, resulting a feeling of unsafety. Being offered guided information, compared to unguided, led them to understand their cancer history and how this could influence their future life situation.
”It is always easier when there is someone to talk to. I think it is better to receive it together with someone else, like this interview, instead of receiving it in the mail.”
It can be interpreted in so many different ways, if you receive it on your own. I feel much more secure knowing that I can call the late effects clinic.
Although there was a desire for personalization of the information and a belief that this could make the treatment history more useful, the survivors also recognized the complexity of having too many details presented. Further, they stressed a feeling of doubt about the individual data collection, including at what level of detail it should be presented and the resources this would require.
” I’d like it more personalized. But that may require many different pieces of information to be retrieved and put together. I don’t know if it is even possible.”
The Timing Of Information
The survivors highlighted different aspects of when the information about potential risks should be provided, such as receiving honest and detailed information at the end of treatment when they were still very young. Further, they also expressed that the information could also be spaced in time to fit their particular stage of life. The survivors experienced a timeliness link between receiving the information and coping with the risks or awareness of complications.
“It makes the most sense to know all the risks from the beginning. “
But some side effects may not be evident until after 20 years- if so, you may not want to worry those people.
”It came as a shock. It worried me, and I thought -Is this really a complication of the irradiation and medication? No one had told me I could go deaf.”
2. Theme: The Impact Of Awareness
The survivors experienced advantages, as well as disadvantages of knowing and not knowing about complications and risks of complications. They were left with a feeling of confusion and imbalance when the realized that they had poor knowledge and were unprepared for late complications. Absence of information resulted in worry among the survivors and, in the void of information, they had handled their situation on their own.
”I didn’t tell my children that I had been ill. Because I was afraid that they would think that they would get sick. I’ve kept it a secret this entire time.
”It is really tough. The cancer diagnosis is so stigmatizing. When you tell someone you’ve had cancer, they look at you as if you’ve had one foot in the grave. “
Receiving information about complications, as well as future risks of developing complications, was an experience resulting in new insights and an increased level of confidence.
I keep the information at the back of my mind but try not to think about it on an everyday basis.
Knowing is a good thing. It creates attentiveness. But it can also be hard knowing. It is a balance.
3. Theme: Empowerment
Receiving and understanding treatment information and follow-up recommendations led the survivors towards an increased health-related self-confidence. They expressed that preventive measures in terms of lifestyle choices were closer at hand after they had become aware of their risks.
”Knowledge is power- the more you know the more you can be attentive of signs or symptoms”
”I can adjust my habits in order to reduce the risks, if I am in a high risk group.”
The survivors desire of more information, including their interest in understanding the nuances of the treatments and medical follow-up, showed their willingness to take more responsibility of and to play an active role in their own health situation. This can be interpreted as an expression of empowerment among the survivors.
I would have liked to have much more information- all areas, medical charts, and what to keep in mind afterwards. If it doesn’t mention particular risks, you are inclined to think you are out of the woods. Evidently there are multiple things to be aware of.
” Personally, I want it to state everything. Otherwise it may lead you to think you are not at a particular kind of risk, simply because the information is lacking. “