The Benefits and Burdens of Cancer: A Prospective Longitudinal Cohort Study of Adolescents and Young Adults
Open accessAbstract
BACKGROUND: Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population. OBJECTIVE: We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention. PATIENTS AND METHODS: One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point. SETTING/SUBJECTS: Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data. RESULTS: Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose. CONCLUSIONS: AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The PRISM intervention design includes content and format preferences identified by stakeholders.
“PRISM's design incorporates stakeholder-identified preferences for content and format.37,38”
From Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial (2018) · cites this paper as [38]
High engagement might result from PRISM's inclusion of stakeholder-identified content and format preferences.
“These observations may be due to the fact that PRISM's design incorporates stakeholder-identified preferences for content and format.”
From Promoting resilience in adolescents and young adults with cancer: Results from the PRISM randomized controlled trial (2018) · cites this paper as [38]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Three Approaches to Qualitative Content Analysis
Hsieh, H.-F., & Shannon, S. E. (2005) · Qualitative Health Research · doi:10.1177/1049732305276687 · Cited by 44,601 · see citing works
Emerging adulthood: A theory of development from the late teens through the twenties.
Arnett, J. J. (2000) · American Psychologist · doi:10.1037/0003-066x.55.5.469 · Cited by 16,843 · see citing works
The posttraumatic growth inventory: measuring the positive legacy of trauma
Tedeschi, R. G., & Calhoun, L. G. (1996) · Journal of Traumatic Stress · doi:10.1002/jts.2490090305 · Cited by 7,061 · cited 1× · see citing works
“Post-traumatic growth theory suggests a traumatic event such as cancer not only causes distress but also increases the sense that one is being tested and ‘‘surviving’’; thus, it can spark both negative and positive changes in participants’ views of themselves.(16) Table 1.”
BackgroundPsychological, social, and behavioral issues for young adults with cancer
Zebrack, B. (2011) · Cancer · doi:10.1002/cncr.26056 · Cited by 512 · see citing works
Stress and the developing adolescent brain
Eiland, L. R., & Romeo, R. D. (2012) · Neuroscience · doi:10.1016/j.neuroscience.2012.10.048 · Cited by 491 · see citing works
Posttraumatic Growth in Adolescent Survivors of Cancer and Their Mothers and Fathers
Barakat, L. P., Alderfer, M. A., & Kazak, A. E. (2006) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsj058 · Cited by 478 · see citing works
Kazak, A. E., Barakat, L. P., Meeske, K., Christakis, D., Meadows, A. T., Casey, R., Penati, B., & Stuber, M. L. (1997) · Journal of Consulting and Clinical Psychology · doi:10.1037//0022-006x.65.1.120 · Cited by 467 · see citing works
Perceived benefit and mental health after three types of disaster.
McMillen, J. C., Smith, E. M., & Fisher, R. H. (1997) · Journal of Consulting and Clinical Psychology · doi:10.1037//0022-006x.65.5.733 · Cited by 389 · see citing works
End-of-Life Care Preferences of Pediatric Patients With Cancer
Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S. L., Church, C. L., & Furman, W. L. (2005) · Journal of Clinical Oncology · doi:10.1200/jco.2005.10.538 · Cited by 374 · see citing works
Religion, spirituality, and physical health in cancer patients: A meta‐analysis
Jim, H. S. L., Pustejovsky, J. E., Park, C. L., Danhauer, S. C., Sherman, A. C., Fitchett, G., Merluzzi, T. V., Munoz, A. R., George, L., Snyder, M. A., et al. (2015) · Cancer · doi:10.1002/cncr.29353 · Cited by 373 · see citing works
Kazak, A. E., Barakat, L. P., Meeske, K., et al. (1997) · Journal of Consulting and Clinical Psychology · doi:10.1037/0022-006x.65.1.120 · Cited by 350 · see citing works
Schultz, K. A. P., Ness, K. K., Whitton, J. A., Recklitis, C. J., Zebrack, B., Robison, L. L., Zeltzer, L. K., & Mertens, A. C. (2007) · Journal of Clinical Oncology · doi:10.1200/jco.2006.09.2486 · Cited by 343 · see citing works
Smith, A. W., Bellizzi, K. M., Keegan, T. H. M., Zebrack, B., Chen, V. W., Neale, A. V., Hamilton, A. S., Shnorhavorian, M., & Lynch, C. F. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2012.47.3173 · Cited by 337 · see citing works
Young Adult Oncology: The Patients and Their Survival Challenges
Bleyer, A. (2007) · CA A Cancer Journal for Clinicians · doi:10.3322/canjclin.57.4.242 · Cited by 322 · see citing works
D'Agostino, N. M., Penney, A., & Zebrack, B. (2011) · Cancer · doi:10.1002/cncr.26043 · Cited by 289 · see citing works
Kwak, M., Zebrack, B. J., Meeske, K. A., Embry, L., Aguilar, C., Block, R., Hayes-Lattin, B., Li, Y., Butler, M., & Cole, S. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2012.45.9222 · Cited by 234 · see citing works
Allowing Adolescents and Young Adults to Plan Their End-of-Life Care
Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012) · Pediatrics · doi:10.1542/peds.2012-0663 · Cited by 233 · see citing works
Well-being, posttraumatic growth and benefit finding in long-term breast cancer survivors
Mols, F., Vingerhoets, A. J. J. M., Coebergh, J. W. W., & van de Poll-Franse, L. V. (2008) · Psychology and Health · doi:10.1080/08870440701671362 · Cited by 228 · see citing works
Thematic Evidence of Psychosocial Thriving in Childhood Cancer Survivors
Parry, C., & Chesler, M. A. (2005) · Qualitative Health Research · doi:10.1177/1049732305277860 · Cited by 197 · see citing works
Prevalence and Predictors of Posttraumatic Stress Disorder in Adult Survivors of Childhood Cancer
Stuber, M. L., Meeske, K., Krull, K. R., Leisenring, W. M., Stratton, K. L., Kazak, A. E., Huber, M., Zebrack, B., Uijtdehaage, S. H. J., Mertens, A. C., et al. (2010) · PEDIATRICS · doi:10.1542/peds.2009-2308 · Cited by 191 · see citing works
Psychosocial dimensions of cancer in adolescents and young adults
Evan, E. E., & Zeltzer, L. K. (2006) · Cancer · doi:10.1002/cncr.22107 · Cited by 163 · see citing works
Benefit Finding Scale for Children: Preliminary Findings from a Childhood Cancer Population
Phipps, S., Long, A. M., & Ogden, J. (2007) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsl052 · Cited by 145 · see citing works
Phipps, S., Klosky, J. L., Long, A. M., Hudson, M. M., Huang, Q., Zhang, H., & Noll, R. B. (2014) · Journal of Clinical Oncology · doi:10.1200/jco.2013.49.8212 · Cited by 130 · see citing works
Danoff‐Burg, S., & Revenson, T. A. (2005) · Journal of Behavioral Medicine · doi:10.1007/s10865-005-2720-3 · Cited by 127 · see citing works
Jacobs, S. S., Perez, J., Cheng, Y. I., Sill, A. M., Wang, J., & Lyon, M. E. (2014) · Pediatric Blood & Cancer · doi:10.1002/pbc.25358 · Cited by 126 · see citing works
Adolescent and young adult cancer: a revolution in evolution?
Thomas, D. M., Seymour, J. F., O’Brien, T., Sawyer, S. M., & Ashley, D. M. (2006) · Internal Medicine Journal · doi:10.1111/j.1445-5994.2006.01062.x · Cited by 112 · see citing works
Sansom‐Daly, U. M., & Wakefield, C. E. (2013) · PubMed Central · doi:10.3978/j.issn.2224-4336.2013.10.06 · Cited by 100 · see citing works
The effects of response bias on self-reported quality of life among childhood cancer survivors
O’Leary, T. E., Diller, L., & Recklitis, C. J. (2007) · Quality of Life Research · doi:10.1007/s11136-007-9231-3 · Cited by 84 · see citing works
Adolescent Encounters With Death, Bereavement, and Coping
Balk, D. E., & Corr, C. A. (2009) · Cited by 80 · see citing works
Contributors and Inhibitors of Resilience Among Adolescents and Young Adults with Cancer
Rosenberg, A. R., Yi-Frazier, J. P., Wharton, C., Gordon, K., & Jones, B. (2014) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2014.0033 · Cited by 78 · cited 2× · see citing works
“The ‘‘Resilience in Adolescents and Young Adults’’ study was a multicenter, prospective, longitudinal mixed-methods study investigating contributors and inhibitors of resilience.(27) The present subanalysis describes findings of serial, semistructured 1:1 interviews conducted at a single site.”
BackgroundSelf-citationPalacios, J. F., Salem, B. E., Hodge, F. S., Albarrán, C. R., Anaebere, A. K., & Hayes-Bautista, T. M. (2014) · Journal of Transcultural Nursing · doi:10.1177/1043659614524253 · Cited by 74 · see citing works
Martz, E., & Livneh, H. (2015) · Journal of Occupational Rehabilitation · doi:10.1007/s10926-015-9598-x · Cited by 69 · see citing works
Phillips‐Salimi, C. R., Lommel, K., & Andrykowski, M. A. (2012) · Pediatric Blood & Cancer · doi:10.1002/pbc.23359 · Cited by 68 · see citing works
Tran, V., Wiebe, D. J., Fortenberry, K. T., Butler, J. M., & Berg, C. A. (2011) · Health Psychology · doi:10.1037/a0022378 · Cited by 66 · see citing works
The neurobiological effects of stress on adolescent decision making
Galván, A., & Rahdar, A. (2012) · Neuroscience · doi:10.1016/j.neuroscience.2012.09.074 · Cited by 65 · see citing works
Attitudes of Adolescent Cancer Survivors Toward End-of-Life Decisions for Minors
Pousset, G., Bilsen, J. J. R., Wilde, J. D., Benoît, Y., Verlooy, J., BOMANS, A., Deliëns, L., & Mortier, F. (2009) · PEDIATRICS · doi:10.1542/peds.2009-0621 · Cited by 65 · see citing works
Occhipinti, S., Chambers, S. K., Lepore, S. J., Aitken, J. F., & Dunn, J. C. (2015) · PLoS ONE · doi:10.1371/journal.pone.0139119 · Cited by 52 · see citing works
Differences in Non-Hodgkin Lymphoma Survival Between Young Adults and Children
Tai, E. W., Pollack, L. A., Townsend, J. S., Li, J., Steele, C. B., & Richardson, L. C. (2010) · Archives of Pediatrics and Adolescent Medicine · doi:10.1001/archpediatrics.2010.4 · Cited by 38 · see citing works
Rosenberg, A. R., Bona, K., Wharton, C. M., Bradford, M., Shaffer, M. L., Wolfe, J., & Baker, K. S. (2016) · Pediatric Blood & Cancer · doi:10.1002/pbc.25843 · Cited by 36 · see citing works
Self-citation“Cancer Doesn't Mean Curtains”: Benefit Finding in Patients with Head and Neck Cancer in Remission
Thambyrajah, C., HEROLD, J., Altman, K., & Llewellyn, C. D. (2010) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2010.516812 · Cited by 31 · see citing works
Flagged first, then by citations
Research works printed but not linked: 1
- [17]Calhoun LG, Tedeschi RG: The foundations of posttraumatic growth: An expanded framework. In: Tedeschi RG. and Calhoun LG. (eds.), Handbook of Posttraumatic Growth: Research and Practice, 1st ed. Lawrence Erlbaum and Associates: New York, NY, 2006, p. 1 [Google Scholar]
Cited by
Sorted by citations
Rosenberg, A. R., Bradford, M. C., McCauley, E., Curtis, J. R., Wolfe, J., Baker, K. S., & Yi‐Frazier, J. P. (2018) · Cancer · doi:10.1002/cncr.31666 · Cited by 215 · see citing works
Self-citationHope and benefit finding: Results from the PRISM randomized controlled trial
Rosenberg, A. R., Bradford, M. C., Barton, K. S., Etsekson, N., McCauley, E., Curtis, J. R., Wolfe, J., Baker, K. S., & Yi‐Frazier, J. P. (2018) · Pediatric Blood & Cancer · doi:10.1002/pbc.27485 · Cited by 110 · see citing works
Self-citationRosenberg, A. R., & Wolfe, J. (2017) · The Lancet Child & Adolescent Health · doi:10.1016/s2352-4642(17)30014-7 · Cited by 51 · see citing works
Self-citationBarton, K. S., Tate, T. P., Lau, N., Taliesin, K. B., Waldman, E. D., & Rosenberg, A. R. (2018) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2018.02.001 · Cited by 51 · see citing works
Self-citationTrying to Feel Normal Again: Early Survivorship for Adolescent Cancer Survivors
Walker, A. J., Lewis, F. M., Lin, Y.-T., Zahlis, E. H., & Rosenberg, A. R. (2018) · Cancer Nursing · doi:10.1097/ncc.0000000000000629 · Cited by 35 · see citing works
Self-citationHope, distress, and later quality of life among adolescent and young adults with cancer
Rosenberg, A. R., Bradford, M. C., Bona, K. O., Shaffer, M. L., Wolfe, J., Baker, K. S., Lau, N., & Yi‐Frazier, J. P. (2017) · Journal of Psychosocial Oncology · doi:10.1080/07347332.2017.1382646 · Cited by 32 · see citing works
Self-citationSalsman, J. M., & Rosenberg, A. R. (2024) · Cancer · doi:10.1002/cncr.35182 · Cited by 27 · see citing works
Self-citationWorries and Benefit Finding in Cancer Survivors and Parents: A Longitudinal Study
Prikken, S., Raymaekers, K., Lemiere, J., Vercruysse, T., Uyttebroeck, A., & Luyckx, K. (2021) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsab130 · Cited by 24 · see citing works
Adolescent and Young Adult Patients with Cancer: Perceptions of Care
LaRosa, K. N., Stern, M., Bleck, J. R., Lynn, C., Hudson, J. N., Reed, D. R., Quinn, G. P., & Donovan, K. A. (2017) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2017.0012 · Cited by 21 · see citing works
Perceptions of children with cancer and their parents regarding illness: A qualitative study
Schwartz‐Attias, I., Krulik, T., Aharon, A. A., & Ronen, T. (2023) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2023.03.006 · Cited by 20 · see citing works
Day-to-Day Decision Making by Adolescents and Young Adults with Cancer
Pyke‐Grimm, K. A., Franck, L. S., Halpern‐Felsher, B. L., Goldsby, R. E., & Rehm, R. S. (2022) · Journal of Pediatric Hematology/Oncology Nursing · doi:10.1177/27527530211068718 · Cited by 14 · see citing works
Wayant, C., Manquen, J., Wendelbo, H., Kerr, N., Crow, M., Goodell, J., Tricco, A. C., Mack, J. W., Hellman, C. M., & Vassar, M. B. (2021) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2020.0184 · Cited by 14 · see citing works
Shin, H., BARTLETT, R. L., & Gagne, J. C. D. (2020) · Oncology nursing forum · doi:10.1188/20.onf.e131-e148 · Cited by 11 · see citing works
Palliative Care in Pediatric Oncology and Hematopoietic Stem Cell Transplantation
Uber, A., Ebelhar, J. S., Lanzel, A. F., Roche, A., Vidal‐Anaya, V., & Brock, K. E. (2022) · Current Oncology Reports · doi:10.1007/s11912-021-01174-z · Cited by 10 · see citing works
Husson, O., Janssen, S. H. M., Reeve, B. B., Sodergren, S. C., Cheung, C. K., McCabe, M. G., Salsman, J. M., van der Graaf, W. T. A., & Darlington, A. (2024) · BMC Cancer · doi:10.1186/s12885-023-11716-2 · Cited by 7 · see citing works
Xiang, D., Zhang, Z., Song, G., Wang, W. N., Lin, B., Chen, S., Guo, E., Zhang, P.-B., Liu, Z.-W., Li, H., et al. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-065767 · Cited by 8 · see citing works
Choi, A. K., Korhummel, M., Belza, C. C., Eguizabal, J. H., Olfus, S., Rapoport, C., Blum, J. D., Tapia, V. J., Drizin, J. H., Gosman, A., et al. (2025) · The Cleft Palate-Craniofacial Journal · doi:10.1177/10556656241305889 · Cited by 6 · see citing works
Labudde, E. J., DeGroote, N. P., Ebelhar, J. S., Massie, A. M., Allen, K. E., Castellino, S. M., Wasilewski‐Masker, K. J., & Brock, K. E. (2021) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2021.0081 · Cited by 6 · see citing works
Experiences of adolescents with cancer from diagnosis to post-treatment: a scoping review
Greenblatt, A., & Saini, M. (2019) · Social Work in Health Care · doi:10.1080/00981389.2019.1640338 · Cited by 5 · see citing works
Simon, P. J., Pyke‐Grimm, K. A., & Nasr, A. S. (2022) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2021.0195 · Cited by 4 · see citing works
Leimanis, M. L., & Zuiderveen, S. (2018) · Springer eBooks · doi:10.1007/978-3-319-75223-5_7 · Cited by 1 · see citing works
Role of Autonomy and Justice in Adolescent Decision Making in Inherited Cancer Syndromes
Louie, K. (2018) · Juniper Online Journal of Case Studies · doi:10.19080/jojcs.2018.07.555711
O'Reilly, H. (2020) · The Atrium (University of Guelph)
Pediatric Palliative Care Involvement in Specific Populations
Delgado‐Corcoran, C., Bierer, R., Finnerty, L. C., Gradick, K., Harman, B., Harousseau, M. E., Johnston, B., Kronaizl, S., Moore, D., Moresco, B. L., et al. (2024) · SpringerBriefs in public health · doi:10.1007/978-3-031-65452-7_2
Schwartz‐Attias, I., Krulik, T., Roziner, I., & Ronen, T. (2025) · Journal of Pediatric Hematology/Oncology Nursing · doi:10.1177/27527530251381701
Husson, O., Janssen, S. H. M., Reeve, B. B., Sodergren, S. C., Cheung, C. K., McCabe, M. G., Salsman, J. M., van der Graaf, W. T. A., & Darlington, A.-S. (2024) · Figshare · doi:10.6084/m9.figshare.25059513
Research Progress on Longitudinal Trajectory of Benefit Finding in Patients with Chronic Diseases
刘, 蓉. (2025) · Nursing Science · doi:10.12677/ns.2025.1411299
Collaço, N., Sodergren, S. C., Way, K. M., Košir, U., Cairns, C., van der Graaf, W. T. A., Husson, O., & Darlington, A. (2026) · Supportive Care in Cancer · doi:10.1007/s00520-026-11170-3
- Authors
- Straehla, J. P., Barton, K. S., Yi-Frazier, J. P., Wharton, C., Baker, K. S., Bona, K., Wolfe, J., & Rosenberg, A. R.
- Affiliations
- Harvard University (US)
- Seattle Children's Hospital (US)
- Cancer and Blood Disorders Center, Seattle Children's Hospital, Seattle, Washington.
- Boston Children's Hospital (US)
- Corresponding author
- Rosenberg, Abby R.
- ORCID
- Venue
- Journal of Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2017-05
- Volume
- 20
- Issue
- 5
- Pages
- 494-501
- ISSN
- 1096-6218 (ISSN-L)
- 1557-7740
- PMC
- PMC5421607
- OpenAlex
- W2578562549
- Cited by
- 28
- References
- 39
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 4 · 2023: 2 · 2022: 3 · 2021: 3 · 2020: 2 · 2019: 1 · 2018: 6 · 2017: 3
- FWCI
- 3.58
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Palliative Medicine (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- American Society of Clinical Oncology
- CureSearch for Children's Cancer (KL2TR000421)
- Seattle Children's Research Institute
- American Academy of Hospice and Palliative Medicine
- National Institutes of Health (KL2TR000421, KL2TR002317)
- Center for Clinical and Translational Research (KL2TR000421)
- National Center for Advancing Translational Sciences
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Family Support in Illness
- Keywords
- adolescent and young adult cancer, benefit finding, physical distress, life purpose, philosophy of life, sarcoma, acute leukemia, lymphoma, chemotherapy
- MeSH terms
- Adaptation, Psychological, Adolescent, Psychology, Adolescent, Adult, Attitude to Health, Female, Humans, Longitudinal Studies, Male, Neoplasms, Prospective Studies, Quality of Life, Cohort Studies, Young Adult
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
