Patient-reported needs for coping with worry or fear about cancer recurrence and the extent to which they are being met: a survey study

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.