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      Prevalence and correlates of high fear of cancer recurrence in late adolescents and young adults consulting a specialist adolescent and young adult (AYA) cancer service

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          Abstract

          Objective

          High fear of cancer recurrence (FCR) is a frequently reported problem among cancer patients. Previous research has shown that younger age is associated with higher levels of FCR. However, little attention has been given to date about how FCR manifests itself among adolescent and young adult (AYA) cancer patients. This study explores the prevalence, correlates of high FCR, and its association with HRQoL in cancer patients in their late adolescence or young adulthood.

          Methods

          Seventy-three AYA cancer patients, aged 18–35 years at diagnosis, consulted the AYA team of the Radboud University Medical Center completed questionnaires including the Cancer Worry Scale (CWS), Quality of Life-Cancer Survivors (QOL-CS), and Hospital Anxiety and Depression Scale (HADS). Sociodemographic and medical data was collected by self-reported questionnaire.

          Results

          Forty-five participants experienced high FCR (62%), which was higher than the 31–52% reported in previous studies among mixed adult cancer patient samples. Sociodemographic and medical variables were not associated with levels of FCR. High FCR was significantly associated with lower levels of social and psychological functioning and overall HRQoL and higher levels of anxiety and psychological distress.

          Conclusion

          Results illustrate that FCR is a significant problem among AYA cancer patients consulting an AYA team, with participants reporting higher levels of FCR than cancer patients of mixed ages. Health care providers should pay specific attention to this problem by screening and the provision of appropriate psychosocial care when needed.

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          Most cited references31

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          Quality of life measurement: bibliographic study of patient assessed health outcome measures.

          Andrew Malcolm Garratt, Louise Schmidt, Anne M MacKintosh … (2002)
          To assess the growth of quality of life measures and to examine the availability of measures across specialties. Systematic searches of electronic databases to identify developmental and evaluative work relating to health outcome measures assessed by patients. Types of measures: disease or population specific, dimension specific, generic, individualised, and utility. Specialties in which measures have been developed and evaluated. 3921 reports that described the development and evaluation of patient assessed measures met the inclusion criteria. Of those that were classifiable, 1819 (46%) were disease or population specific, 865 (22%) were generic, 690 (18%) were dimension specific, 409 (10%) were utility, and 62 (1%) were individualised measures. During 1990-9 the number of new reports of development and evaluation rose from 144 to 650 per year. Reports of disease specific measures rose exponentially. Over 30% of evaluations were in cancer, rheumatology and musculoskeletal disorders, and older people's health. The generic measures--SF-36, sickness impact profile, and Nottingham health profile--accounted for 612 (16%) reports. In some specialties there are numerous measures of quality of life and little standardisation. Primary research through the concurrent evaluation of measures and secondary research through structured reviews of measures are prerequisites for standardisation. Recommendations for the selection of patient assessed measures of health outcome are needed.
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            Measurement of the quality of life in cancer survivors.

            B Ferrell, K H Dow, M. Grant (1995)
            A QOL instrument was developed to measure the specific concerns of long term cancer survivors. The QOL-CS is based on previous versions of the QOL instrument developed by researchers at the City of Hope National Medical Centre (Grant, Padilla, and Ferrell). This instrument was revised over a one year pilot by Hassey-Dow and Ferrell. The revised instrument included 41 items representing the four domains of quality of life incorporating physical, psychological, social, and spiritual well being. The present study was conducted as a mail survey to the membership (n = 1,200) of the National Coalition for Cancer Survivorship with 686 subjects responding to the survey. This survey included a Demographic tool, QOL-CS and the FACT-G tool developed by Cella. Psychometric analysis, performed on 686 respondents, included measures of reliability and validity. Two measures of reliability included test-retest and internal consistency. The overall QOL-CS tool test-retest reliability was 0.89 with subscales of Physical r = 0.88, Psychological r = 0.88, Social r = 0.81, and Spiritual, r = 0.90. The second measure of reliability was computation of internal consistency using Cronbach's alpha coefficient as a measure of agreement between items and subscales. Analysis revealed an overall r = 0.93. Subscale alphas average ranged from r = 0.71 for spiritual well being, r = 0.77 for physical, r = 0.81 for social, and r = 0.89 for psychological. Several measures of validity were used to determine the extent to which the instrument measured the concept of QOL in cancer survivors. The first method of content validity was based on a panel of QOL researchers and nurses with expertise in oncology. The second measure used stepwise multiple regression to determine factors most predictive of overall QOL in cancer survivors. Seventeen variables were found to be statistically significant accounting for 91% of the variance in overall QOL. The fourth measure of validity used Pearson's correlations to estimate the relationships between the subscales of QOL-CS and the subscales of the established FACT-G tool. There was moderate to strong correlation between associated subscales including QOL-CS physical to FACT physical (r = 0.74), QOL-CS Psych to FACT Emotional (r = 0.65), QOL Social to FACT Social (r = 0.44). The overall QOL-CS correlation with the FACT-G was 0.78. Additional measures of validity included correlations of individual items of the QOL-CS tool, factor analysis, and construct validity discriminating known groups of cancer survivors. Findings demonstrated that the QOL-CS and its subscales adequately measured QOL in this growing population of cancer survivors.
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              Psychological, social, and behavioral issues for young adults with cancer.

              Brad J Zebrack (2011)
              Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health-related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them.
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                Author and article information

                Contributors
                Belinda Thewes:
                ORCID: http://orcid.org/0000-0002-4092-6161
                + 31 24 361 63 61 , belinda.thewes@radboudumc.nl
                Journal
                Journal ID (nlm-ta): Support Care Cancer
                Journal ID (iso-abbrev): Support Care Cancer
                Title: Supportive Care in Cancer
                Publisher: Springer Berlin Heidelberg (Berlin/Heidelberg )
                ISSN (Print): 0941-4355
                ISSN (Electronic): 1433-7339
                Publication date (Electronic): 22 November 2017
                Publication date PMC-release: 22 November 2017
                Publication date (Print): 2018
                Volume: 26
                Issue: 5
                Pages: 1479-1487
                Affiliations
                [1 ]ISNI 0000 0004 0444 9382, GRID grid.10417.33, Department of Medical Psychology, , Radboud University Medical Center, ; PO Box 9101, 6500 HB Nijmegen, The Netherlands
                [2 ]ISNI 0000 0004 0444 9382, GRID grid.10417.33, Department of Medical Oncology, , Radboud University Medical Center, ; Nijmegen, the Netherlands
                [3 ]ISNI 0000 0001 0304 893X, GRID grid.5072.0, Institute of Cancer Research and Royal Marsden NHS Foundation Trust, ; London, UK
                Author information
                http://orcid.org/0000-0002-4092-6161
                Article
                Publisher ID: 3975
                DOI: 10.1007/s00520-017-3975-2
                PMC ID: 5876258
                PubMed ID: 29168035
                SO-VID: 9ecd7998-5a92-4fa3-9abb-a79a4f66aec4
                Copyright © © The Author(s) 2017
                License:

                Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                Date received : 4 May 2017
                Date accepted : 13 November 2017
                Funding
                Funded by: Radboud University Medical Center
                Categories
                Subject: Original Article
                Custom metadata
                issue-copyright-statement © Springer-Verlag GmbH Germany, part of Springer Nature 2018

                ScienceOpen disciplines: Oncology & Radiotherapy
                Keywords: adolescent and young adult cancer,aya,fear of cancer recurrence,oncology,quality of life
                Data availability:
                ScienceOpen disciplines: Oncology & Radiotherapy
                Keywords: adolescent and young adult cancer, aya, fear of cancer recurrence, oncology, quality of life

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