Abstract
Purpose
Many cancer patients and survivors experience fear or worry about cancer recurrence (FCR). Evidence suggests support for FCR is their largest unmet need. We aimed to assess which types of support are needed, which providers are preferred and to what extent patients’ needs are being met.
Methods
Together with the Dutch Federation of Cancer Patient Organisations (NFK), a purpose-designed questionnaire was distributed online via e-mail, newsletters and social media. All questions were multiple choice or Likert scales, except for an open-ended question about the preferred provider of care.
Results
Out of 5323 respondents, 4511 had experienced FCR and were included. Among them, 94% indicated a need for support. The required types of support that were reported the most were talking about FCR (69%), enjoyable activities for distraction (56%) and psychological help or coaching (40%). On average, younger respondents and women wanted more support than older respondents and men. Eighty-five percent of respondents received at least one type of support they wanted. Practical tips about FCR and additional medical check-ups were most often missed. Social contacts provided an important part of support, especially with talking and distracting activities. For other types of support, respondents usually preferred professionals.
Conclusions
Almost all patients who experience FCR have a need for support. Even though most receive some support, several gaps remain.
Implications for Cancer Survivors
Many report an unmet need for psychological help or practical tips about FCR. We recommend for healthcare providers to discuss FCR with patients and inform them about the support available.
Supplementary Information
The online version contains supplementary material available at 10.1007/s11764-022-01326-5.
Keywords: Fear of cancer recurrence, Needs, Oncology, Cancer survivorship
Introduction
Due to longevity and improved treatments, the number of cancer patients and survivors is increasing [1]. In an individual participant data meta-analysis of 46 studies, 58.9% of cancer patients and survivors experienced fear of cancer recurrence (FCR) [2]. FCR is defined as ‘fear, worry, or concern relating to the possibility that cancer will come back or progress’ [3]. In several studies, FCR is listed as the most common problem and the largest unmet need [4–7]. While effective programmes and treatments exist [8], it is unclear whether these match patient needs and whether they always reach patients.
To add to the complexity, not all patients who experience FCR want or require help [9–11] and the association between measured distress and subjective need for psychological help is limited [12]. In one study, only 36% of distressed patients had a desire for help [13]; in another study, 49% [14]. In a review of 53 studies (n = 12,323), nearly half of cancer patients and survivors who were offered a psychological intervention did not accept it. Notably, patients who were identified in screening as being distressed were less likely to accept interventions than other patients [15]. In addition, in another study, one-fourth of those who in screening did not score high on distress did want help [10]. Also, some patients only experience FCR when it is triggered, e.g. by medical check-ups, and not the rest of the time [16, 17]. Therefore, screening alone may not be enough to identify patients in need of help [10, 15].
Ideally, patients receive the type and intensity of care that matches their needs and that prevents a larger care need in the future. Studies have shown there is a need for help for FCR [6] by asking patients to rate items such as, ‘I need help to manage my concerns about the cancer coming back’ [18]. However, they do not specify what kind of help is needed, nor who can best provide this help. Most intervention studies focus on high-intensity, psychological care [19], while some patients may be helped by low-intensity support or a supportive social network. Exploring alternatives to specialised care can help to provide appropriate care to more patients, especially considering that the implementation of psychological interventions is complex and costly [20, 21].
We aimed to explore the variety of patient needs for both professional and non-professional support for FCR. We aimed to assess which types of support are needed, which providers are preferred and to what extent patients’ needs are currently being met.
Methods
In December 2021, the Dutch Federation of Cancer Patient Organisations (NFK in Dutch) distributed a questionnaire about FCR. NFK is an umbrella organisation uniting 19 cancer patient organisations in the Netherlands.
Eligibility criteria
The questionnaire was open to all adult (≥ 18 years) cancer patients and survivors. However, patients were excluded from the analyses if they never experienced FCR.
For most of the ‘Results’ section, only the respondents who had FCR at the time of the questionnaire were included, since this population best reflects the population in potential need of FCR support, without recall bias influencing outcomes. In the sections ‘Treatment phase in which FCR was experienced’ and ‘Support received’, respondents who previously had FCR were also included. As these sections describe the development of FCR over time and the effect of receiving support, including these participants contributes towards a more complete picture.
Data collection
A questionnaire was developed by a working group with members from NFK, patient representatives and experts in the fields of primary care and psycho-oncology from the Julius Centre for Health Sciences and Primary Care and from the Helen Dowling Institute, an academic mental health institute specialised in cancer-related psychological problems. After the working group specified the objectives, NFK designed a first draft of the questionnaire, which was further improved by the group. To limit the length of the questionnaire, it was decided not to use validated measures for FCR. Instead, a single item rating the level of FCR from 1 to 10 was used. The questionnaire was introduced by stating that cancer can lead to worry or fear and that the researchers want to learn more about this, in order to improve care for those with FCR. It was also stated that any adult who currently or previously had cancer could participate, regardless of whether they have experienced FCR or not. The questionnaire was distributed online between November 30 and December 14, 2021 via e-mail, newsletters and social media by NFK, affiliated cancer organisations, the Dutch Cancer Society, the website kanker.nl, the Helen Dowling Institute and several hospitals. The questionnaire was also sent to NFK’s patient panel, which regularly fills out questionnaires. Respondents participated anonymously in the survey.
The following background information was collected in the survey: gender, age, education status, heredity of cancer, family situation, treatment status, cancer status, cancer type, time since diagnosis and general fearfulness before cancer, as reported by the respondent.
Regarding their FCR, respondents filled out questions about the stages in which they experienced FCR and about the content, triggers and consequences of their FCR. FCR was always phrased as ‘worry or fear about cancer recurrence’. Concerning need for support, respondents answered questions about the type of support that was needed, the preferred provider, whether they received the support and, if so, whether it helped. All questions were closed ended (multiple choice or Likert scales), including, where relevant, an ‘other’ category. The only exception is the question about who respondents would like to receive support from, which was open ended. The full questionnaire can be found in Online Resource 1.
Data analysis
We report descriptive statistics, including means and percentages. The type of support that was needed was also calculated for different subgroups, based on age, gender, family situation, general level of fear, treatment phase, expressions of FCR and consequences of FCR. We also compared the need for support between subgroups (e.g. men vs. women). Due to the large percentage of respondents requiring help, we calculated the mean percentage across support types. As statistical significance is easily reached with our large sample size (including for clinically irrelevant differences) and since we aim to reflect clinical relevance and applicability, we report percentages and did not perform statistical testing.
The open-ended question about who respondents would like to receive support from was answered separately for each type of support. Based on the answers, the responses were grouped into three categories: professionals, social contacts and other. Professionals consisted of the following sub-categories: general practitioners, specialists, nurses, psychological care and other professional caregivers. There were myriad types of ‘other professional caregivers’ including social workers, physiotherapists, dieticians, spiritual counsellors and haptotherapists. Social contacts consisted of partners, family and friends, and other contacts. Other consisted of (online) tools, patient organisations and fellow patients.
No imputation was applied. All analyses were done in R 3.6.3 [22].
Results
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 questionnaire
| n (%) | |
|---|---|
| Gender | |
| Men | 845 (27) |
| Women | 2331 (73) |
| Other | 2 (0) |
| Education status | |
| No education | 8 (0) |
| Practical education | 434 (14) |
| Secondary education | 1130 (36) |
| Higher education | 1550 (49) |
| Other | 11 (0) |
| Cancer type | |
| Breast cancer | 1754 (33) |
| Haematological and lymphatic cancers | 840 (16) |
| Prostate cancer | 716 (14) |
| Colorectal cancer | 606 (11) |
| Urogynaecological cancer | 492 (9) |
| Lung cancer | 183 (3) |
| Skin cancer | 141 (3) |
| Stomach/oesophageal cancer | 113 (2) |
| Other | 478 (9) |
| Hereditary cancer | |
| Yes | 129 (4) |
| No, but common in family | 498 (16) |
| No, not that I am aware of | 2551 (80) |
| Treatment status | |
| Currently in treatment | 1041 (33) |
| Treatment not yet started | 47 (1) |
| Wait-and-see | 159 (5) |
| Treatment completed, but still check-ups | 1590 (50) |
| Treatment completed, no more check-ups | 341 (11) |
| Cancer status | |
| No cancer anymore | 1726 (54) |
| Curable cancer | 265 (8) |
| Incurable cancer | 986 (31) |
| Do not know | 201 (6) |
| Family situation | |
| Living together | 1494 (47) |
| Living together with children | 946 (31) |
| Living alone | 496 (16) |
| Living alone with children | 180 (6) |
| Time since diagnosis | |
| 0–2 years | 1263 (40) |
| 3–5 years | 850 (27) |
| 6–10 years | 619 (20) |
| 10 + years | 421 (13) |
| General fearfulness before cancer (1–10) | |
| 1–3 | 2156 (68) |
| 4–5 | 437 (14) |
| 6–7 | 347 (11) |
| 8–10 | 238 (8) |
Fear of cancer recurrence
FCR 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 support
Needed 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)
| Total (%) | Professionals (%)* | Social contacts (%)* | Others (%)* | |
|---|---|---|---|---|
| Talking about FCR | 2185 (69) | 872 (41) | 1440 (68) | 257 (12) |
| Enjoyable activities for distraction | 1785 (56) | 32 (2) | 1296 (77) | 22 (1) |
| Psychological help or coaching | 1285 (40) | 1062 (86) | 50 (4) | 32 (3) |
| Practical tips about managing FCR for self | 1144 (36) | 790 (75) | 70 (7) | 124 (12) |
| Information about FCR | 960 (30) | 753 (84) | 31 (3) | 90 (10) |
| Additional medical check-ups | 695 (22) | 539 (82) | 13 (2) | 1 (0) |
| Practical tips about managing FCR for environment | 521 (16) | 332 (72) | 43 (9) | 49 (11) |
| Lifestyle support | 476 (15) | 331 (74) | 43 (1) | 14 (3) |
| Medication | 462 (15) | 308 (71) | 4 (1) | 0 (0) |
| No need for support | 204 (6) | – | – | – |
| Other | 267 (8) | – | – | – |
*The percentages do not add up to 100% because respondents could list multiple providers and some also did not list any.
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
| Did not receive support | Received support, and this helped | Received support, but this did not help | |
|---|---|---|---|
| Talking about FCR | 342 (11) | 2459 (82) | 207 (7) |
| Enjoyable activities for distraction | 204 (9) | 2083 (88) | 68 (3) |
| Psychological help or coaching | 340 (21) | 1096 (69) | 156 (10) |
| Practical tips about managing FCR for self | 573 (41) | 697 (50) | 111 (8) |
| Information about FCR | 389 (31) | 765 (61) | 100 (8) |
| Additional medical check-ups | 387 (45) | 410 (48) | 60 (7) |
| Practical tips about managing FCR for environment | 318 (49) | 292 (45) | 38 (6) |
| Lifestyle support | 218 (35) | 341 (55) | 61 (10) |
| Medication | 80 (14) | 446 (78) | 47 (8) |
Discussion
Most patients with FCR need support. FCR is most common around diagnosis and becomes less prevalent with every following phase. Nonetheless, more than 1 year after treatment ended, 58% of those who experienced FCR at some point in their cancer journey still scored 6 or higher on a scale of 10. Ninety-four percent of respondents with FCR want support. The kinds of support that are most needed are talking about FCR, enjoyable activities for distraction, and psychological help or coaching. The first two support types, patients mostly want from social contacts, although 41% also want to talk to professionals. The remaining support types, patients want from professionals. In accordance with other studies, younger respondents and women on average were found to need more support [10, 23, 24]. They also experience a higher level of FCR [2]. Notably, since respondents could select more than one preferred support type, higher percentages needing support could be partly explained by a greater diversity in preferred types of support rather than a higher need for support. Comparing care needs between different family situations, treatment phases, levels of general fearfulness, FCR expressions and FCR consequences, we found that most differences are small. One exception is the need for psychological help or coaching. More of the respondents with children, panic attacks or relationship problems and more of those scoring 4–7 on general fearfulness expressed a need for this. More of those with panic attacks also need medication and/or practical tips. It is remarkable that more of those scoring 4–7 than 8–10 on general fearfulness need psychological help. This may have to do with those scoring higher already having received help, or avoiding help.
Eighty-five percent of respondents received at least one type of support they needed. Especially talking and distracting activities were often received. Support that was received, usually also helped. Practical tips and additional medical check-ups were often missed.
Study limitations
This study has several limitations. First, it is a survey study in which respondents answered questions about their needs. Yet, they may not know exactly what different types of support entail and what would help them the most. What they answer may also not be fully aligned with the type of support they would accept and seek out in practice. In addition, it may have been difficult for respondents to distinguish between the impact of the FCR and the impact of the cancer and its treatment. For example, poor sleeping, relationship difficulties and being unable to work can be caused by both FCR and cancer (treatments).
Second, the respondents may not have been entirely representative of all patients with FCR. The survey was distributed by a cancer patient organisation. People who are affiliated with cancer patient organisations may be more (pro)active than average, may experience more needs and may also be more able to find support. In addition, in our sample there was an overrepresentation of women, some cancer types and people with higher education. These characteristics may affect the need for support, as well as the ability to find it.
Finally, the questionnaire was distributed during the COVID-19 pandemic. The pandemic may have made people more fearful. In addition, some healthcare appointments and treatments were postponed and others were replaced by phone calls. This may have made people less confident they were receiving the best possible care and could increase FCR.
Clinical implications
Almost all cancer patients who experience FCR want some type of support. Fortunately, most respondents already received at least one type of support, and this support usually also helped. Social contacts provide an important part of this support. Talking about FCR and distracting activities are the most reported needs with most respondents preferring to receive these from social contacts. Other studies have also shown the importance of the social network, especially for social and psychological aspects [25].
However, professional help is still needed. First, in our study, information about FCR, help with lifestyle and practical tips about FCR were often missed, and most preferred to receive these from professionals. Different patients preferred different types of professionals: some preferred psychological care professionals; others preferred medical specialists, nurses, GPs or other caregivers. Professionals need to be supported to improve the availability of these types of support. They can, for example, discuss these topics during consults or provide a brochure or website. Second, patients would like additional medical check-ups. Interestingly, medical examinations are also the most common trigger for FCR. We therefore recommended to discuss with patients whether additional check-ups would have clinical benefits and/or help to combat anxiety, or whether alternative strategies might be more helpful. Ankersmid et al. recommend shared decision-making about surveillance schedules to adapt them to patients’ individual needs, preferences and risks and to increase patients’ comprehension and support of these schedules [26].
Finally, while in our study four-fifths of those who wanted psychological help or coaching received it, one-fifth did not. In another study, 41% did not receive it [27]. Therefore, it is recommended to increase the effort to make sure that patients know the available opportunities for psychological care, in case they need and want it. Especially patients with children, panic attacks or relationship problems may need this help. Most respondents preferred to receive this type of help from a psychological care provider, some from another care provider. Stigma and accessibility might be reasons why patients prefer other care providers [28]. Notably, some patients may benefit from psychological care, but may not seek it. In one study, it was found that only 36% of distressed patients established contact with the psychosocial care team, although the team proactively reached out [29]. In another study, it was found that patients prefer to hear about psychological support from their oncologist and were more likely to follow their recommendation [27, 30]. Sometimes, psycho-education about risks and management opportunities may increase a desire for help [9] and can decrease stigmatisation [2, 31].
Conclusion
While this study shows a great need for support for FCR, it is encouraging that many respondents already found (part of) the support they needed. Room for improvement among professionals consists mostly of the provision of practical tips and information about FCR, shared decision-making about the number of medical check-ups, and increasing awareness about the availability and potential benefits of psychological help or coaching. Considering the variety of needs between patients and the fluctuations of FCR over time, we recommend healthcare providers to discuss FCR and the opportunities for support with all patients. We also recommend additional research on and implementation of low-intensity types of support such as information and tips. These types of support are needed by many patients and are more economical and feasible to provide to large numbers of patients than specialised psychological care. Lastly, in order to match patients with the most suitable type of support, we recommend qualitative research to clarify what people hope to obtain from different support types and research on the effectiveness of different support types in meeting these needs.
Supplementary Information
Below is the link to the electronic supplementary material.
Acknowledgements
We thank all participants who filled out the survey. We thank Dr. Mariken Stegmann for her elaborate input from a general practitioner’s perspective.
Author contribution
All authors contributed to the study conception and design and the development of the questionnaire. Data analysis was performed by YL. The first draft of the manuscript was written by YL. All authors commented on previous versions of the manuscript and read and approved the final manuscript.
Data availability
The dataset analysed during the current study is not publicly available. Information on how to obtain it is available from the corresponding author on request.
Declarations
Competing interests
The authors declare no competing interests.
Ethics approval
Since this study did not involve an intervention, the Medical Research Involving Human Subject Act does not apply. The study was performed in accordance with the 1964 Helsinki declaration, its amendments and comparable ethical standards.
Conflict of interest
The authors declare no competing interests.
Footnotes
Publisher's note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The dataset analysed during the current study is not publicly available. Information on how to obtain it is available from the corresponding author on request.