Out of 5323 respondents, 812 (15%) had never experienced FCR and were excluded. Of the remaining 4511 respondents, 3178 (70%) had FCR at the time of the questionnaire and were included for all analyses. In total, 1333 (30%) respondents previously had FCR, but not at the time of the questionnaire. These respondents were included only for the sections ‘FCR and treatment phase’ and ‘Support received’.

Demographics

The sample of patients who had FCR at the time of the questionnaire consisted of 2331 (73%) women and 845 (27%) men. The average age was 59 (SD ± 11). Two-thirds had completed treatment at the time of the survey and three-quarters had a partner. For further demographic and medical information, see Table 1.

Table 1 Demographic and medical information of respondents who had FCR at the time of the questionnaireFear of cancer recurrenceFCR and treatment phase

Of the participants who had FCR at the time of the questionnaire, 2028 (64%) had had FCR since the diagnosis and for 1150 (36%) it started at a later stage.

The percentage of respondents reporting high FCR (8–10 on a scale of 10) is highest around diagnosis (60%) and decreases with each following phase. The percentage experiencing low FCR (1–3 on a scale of 10) was 10% around diagnosis, 9% between diagnosis and treatment, 12% during treatment, 16% shortly after the end of treatment and 23% longer than 1 year after treatment. Figure 1 shows the development of FCR severity in the different treatment phases.

Fig. 1

Overview of the percentage of respondents that experienced different levels of FCR in different treatment phases. N.B. the different totals are due to some patients not yet having started or completed treatment at the time of the questionnaire

Triggers for FCR

The most reported triggers were medical examinations, such as blood tests or scans (68%), physical symptoms or being ill (63%), and thinking about the future (51%). The remaining triggers, in order from most to least reported, were reading or talking about chances of recurrence or death (43%), healthcare appointments in general (28%), hearing about cancer from people around me (27%) and physical self-examination (15%). Only 2% of respondents stated there were no specific triggers for their FCR.

Content of FCR

When asked what people are afraid of, all topics included in the multiple-choice question were selected by at least 75%. These topics were consequences of cancer or treatment for partner (reported by 98%) and for self (97%), having to go through treatment again (95%), incurable metastases and dying (93%), recurrence in a different area (92%), consequences of cancer or treatment for children (83%) and for others (80%), and recurrence in the same area (75%). The average amount of FCR experienced was rated around 6.5 on a scale of 10 for all topics except dying, which was rated 7.3 and incurable metastases which was rated 5.1.

Expressions of FCR

The most reported expressions of FCR were rumination (67%), nervousness (55%) and poor sleeping (53%). In addition, some respondents experience sadness (35%), inability to concentrate (35%), irritability (33%), listlessness (21%), physical complaints such as headaches (20%), a changed eating pattern (18%), increased heartrate (15%), tingling in hands or feet (12%), panic attacks (12%) or other consequences (8%). On average, respondents report 3.8 (SD 2.2) of these expressions; 2.6% report none.

Consequences of FCR

The most reported consequences of FCR are difficulties with sex or intimacy (55%), less enjoyment of things previously enjoyed (52%), fewer social activities (46%), inability to do work or volunteer work (45%), difficulties with daily activities (42%) and inability to do hobbies (42%). In addition, some have tensions within the family (24%), relationship problems (18%) and a less healthy lifestyle (10%). On average, respondents have 2.9 (SD 2.2) of these consequences; 18% have none.

The average negative influence of FCR on quality of life was rated 6.2 (SD 2.3) on a scale of 10.

Patient preferences for type of supportNeeded types of support and preferred providers

The percentages of respondents who need different support types are presented in Table 2. The types of support that are most often needed are talking about FCR (69%), enjoyable activities for distraction (56%), and psychological help or coaching (40%). In addition, about one-third report a need for practical tips about managing FCR (36%) and information about FCR (30%). Only 6% has no need for support. For talking about FCR and enjoyable activities for distraction, respondents mostly prefer social contacts (68% and 77%, respectively) although 41% also want to talk to professionals. For the other types of support, respondents mostly prefer professionals (see Table 2).

Table 2 Numbers and percentages of respondents who want to receive different types of support, and, within those groups, numbers and percentages of those who want to receive it from professionals, social contacts and others (these groups are defined in the ‘Methods’ section)

In the following paragraph, all percentages are proportions of the group that wants a certain type of support. Most respondents who want to talk, want to talk to family (44%) or their partner (38%). Some want to talk to fellow patients (12%), a specialist (11%), their GP (10%) or a psychological care provider (9%). Respondents prefer receiving psychological help or coaching from psychological care professionals (55%) and some from other caregivers (19%) or their GP (8%). Respondents prefer receiving practical tips about managing FCR from psychological care professionals (21%), specialists (11%), other caregivers (11%) or fellow patients (8%). Respondents prefer receiving information about FCR from specialists (45%) or in some cases a nurse (13%) or GP (12%). For additional medical check-ups, most respondents prefer seeing a specialist (55%) and some a GP (12%) or nurse (7%). Respondents prefer receiving support for a healthy lifestyle from other professional caregivers (50%) or psychological care professionals (14%). The preferred provider of medication is most often the GP (46%).

Differences between subgroups

The number and percentage of respondents who need the different support types are presented per age group, gender, family situation, level of general fearfulness before cancer, treatment phase, FCR expressions and FCR consequences in Online Resource 2.

Younger respondents report a greater need for support. For example, averaging across the different support types, 18% more of the 20–40 age group than the 70 + age group needs support. The difference is especially great for psychological help or coaching, which is needed by 64% of the 20–40 group compared to 20% of the 70 + group.

On average, more women than men need support. The difference is greatest for psychological help or coaching and for enjoyable activities for distraction. Only the need for practical tips for the environment is the same in both groups. Notably, part of the difference between the genders is explained by the younger age of the women than the men in our sample.

The difference in care needs between respondents with different family situations, treatment phases and levels of general fearfulness are small (see Online Resource 2). Respondents with more expressions of FCR report a greater need for all types of support. Also, respondents with more consequences of FCR report a greater need for all types of support except distracting activities. There are few differences between the type of expressions or consequences and the type of support needed. More of those with panic attacks need psychological help or coaching (61% vs. 38%), medication (32% vs. 12%) and/or practical tips about managing FCR for self (53% vs. 36%) or their environment (25% vs. 15%). Also, more of those who have relationship problems need psychological help or coaching (60% vs. 37%).

Notably, age, family situation and treatment phase at the time of the questionnaire may not always have been the same as when the care need was experienced.

Support received

Among those who experienced FCR at the time of the questionnaire or previously, 85% of respondents received at least one type of support they needed. If support was received, it usually helped (91%). Table 3 shows whether the different types of support were received and helped. Overall, most needs for enjoyable activities for distraction (88%), talking (82%), medication (78%), and psychological help or coaching (69%) were fulfilled and helped. Practical tips about managing FCR for both self (41%) and respondents’ environment (49%) and additional medical check-ups (45%) were often missed.

Table 3 Numbers and percentages of respondents who need different support types who did and did not receive them and for whom this did or did not help