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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.MethodsTogether 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, exceptfor an open-ended question about the preferred provider of care.ResultsOut 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 fordistraction (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.ConclusionsAlmost all patients who experience FCR have a need for support. Even though most receive some support, several gaps remain.Implications for Cancer SurvivorsMany 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.

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.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.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.Almost all patients who experience FCR have a need for support. Even though most receive some support, several gaps remain.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.

Contains fulltext : 288352.pdf (Publisher’s version ) (Open Access) OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).

BackgroundMore than half of cancer survivors experience fear of cancer recurrence (FCR). There has been a call for easily accessible, inexpensive interventions for moderate FCR to complement existing specialized care. In the randomized BLANKET trial, we investigated the effectiveness of a short, primary care intervention for FCR. We report on the potential of the intervention and the suitability of primary care to offer this intervention.MethodsThe BLANKET trial is a cluster randomized controlled trial with change in FCR severity (severity subscale of the Fear of Cancer Recurrence Inventory) as its main outcome. Participating general practitioners invited all patients who completed successful curative cancer treatment between 3 months and 10 years ago. We report effect measures, outcome of our recruitment strategy, intervention uptake, reasons not to participate, and experiences with the intervention.ResultsSixty-two of 1368 (4.5%) invited cancer survivors participated. Main reported reasons not to participate were not experiencing FCR and not wanting help. Owing to the low participation, we could not robustly evaluate the intervention's effectiveness. Indicatively, in the intention-to-treat analysis, FCR severity decreased from T0 to T1 by 2.7 points (standard deviation [SD] = 4.7) in the intervention group (n = 27) and 1.8 points (SD = 3.6) in the control group (n = 18). In the per-protocol analysis, the decreases were 3.5 points (SD = 4.5) and 0.7 points (SD = 2.7), respectively.ConclusionAlthough the prevalence of FCR and the need for help for FCR are high according to the literature, the uptake of our primary care–based intervention was low. Although the intervention shows potential, alternative delivery routes need to be explored because of the low number of patients who need help for FCR per primary care practice. We recommend additional research on the impact of FCR, on which patients require and desire help, and on what kind of intervention and setting are fitting for what patients.