How do information and support needs differ among cancer patients with different demographic, treatment and psychosocial characteristics? A survey

RA Willems*, C. Bolman, I. Mesters, I. Kanera, AAJM Beaulen, L. Lechner

*Corresponding author for this work

    Research output: Chapter in Book/Report/Conference proceedingConference Abstract/Poster in proceedingProfessional

    Abstract

    Background: It is well-known that cancer survivors may experience psychosocial problems after treatment. However, it is less clear which information needs cancer survivors have and how they are related to demographic, treatment and psychosocial characteristics. We conducted a survey to gain more insight in cancer survivors’ unmet information needs and their relationship to factors such as time since last treatment, coping, anxiety and depression. The results give insight in differences in information needs among cancer survivors. Methods: Cancer survivors (all types of cancer, primary treatment finished up to one year) were recruited through eight hospitals in the Netherlands. Hospital staff handed out the survey, which participants could fill in and return to the Open University. Validated measures were used to assess unmet needs and indicators of psychosocial health, such as quality of life (EORTC QLQ-C30), psychological distress (HADS), coping (MAC), problem solving skills (SPSI-R), illness perception (IPQ-R), and returning to work. A translated and extended version of the Cancer Survivors Unmet Needs questionnaire (CaSUN) was used to assess information and support needs. Results: Of all respondents (n = 273), 62.6% had unmet needs. Most endorsed needs included support regarding experienced emotions, concerns and stress, dealing with complications, returning to work, and help to quit smoking. Men and respondents with higher education reported significantly more unmet needs. Having used aftercare was positively associated with having unmet needs, while the time since last treatment was negatively associated with unmet needs. A negative adjustment style was strongly associated with more needs regarding comprehensive cancer care, quality of life and relationships. Anxiety and depression were positively associated with needs on the domain of existential survivorship. Conclusions: Within the first year after treatment, cancer survivors experience a variety of unmet information and support needs. There is a strong need for psychosocial support, up to date information, and managing life after treatment. Which type of support is needed most, depends on several factors, of which having a negative adjustment style, feelings of depression, and the use of aftercare are important contributors. Future interventions should give special attention to these factors in order to fulfill and solve survivors’ specific needs within the various need domains. Research implications: The results of the study provide important directions for research and interventions for improving quality of life of cancer survivors. The results of the study gave input for the development of an online tailored intervention (de Kanker Nazorg Wijzer; the Cancer Aftercare Guide). This intervention aims to encourage self-management in cancer survivors in order to help them to deal with psychosocial and lifestyle problems they encounter during life after cancer. Clinical implications: The results of the study provide indications of the most prominent needs of cancer survivors and consequently for improving patients’ aftercare. Within the first year after treatment, survivors experience a great variety in information needs. While providing information and support to cancer survivors, one should personalize the information and support to the cancer survivors’ background and psychosocial characteristics. This way, specific and relevant information is provided, while not overwhelming survivors with information. 
    Original languageEnglish
    Title of host publicationAbstracts of the IPOS 16th World Congress of Psycho-Oncology and Psychosocial Academy
    Subtitle of host publication20 – 24 October 2014, Lisbon, Portugal
    PublisherWiley
    Pages350-351
    Number of pages1
    Volume23
    Editions3
    DOIs
    Publication statusPublished - Oct 2014
    Event16th World Congress of Psycho-Oncology and Psychosocial Academy: Integrating psycho-oncology into mainstream cancer care: From research to action - Lisbon, Portugal
    Duration: 20 Oct 201424 Oct 2014

    Conference

    Conference16th World Congress of Psycho-Oncology and Psychosocial Academy
    Country/TerritoryPortugal
    CityLisbon
    Period20/10/1424/10/14

    Keywords

    • Cancer survivorship
    • Psychosocial oncology
    • eHealth

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