The psychological needs of adolescents and young adults with a diagnosis of myeloproliferative neoplasms: a systematic scoping review of the literature

References

• Harrison CN, Koschmieder S, Foltz L, et al. The impact of myeloproliferative neoplasms (MPNs) on patient quality of life and productivity: results from the International MPN Landmark Survey. Ann Hematol. 2017;96(10):1653–1665. doi:10.1007/s00277-017-3082-y
   PubMed Web of Science ®Google Scholar
• Scherber RM, Kosiorek HE, Senyak Z, et al. Comprehensively understanding fatigue in patients with myeloproliferative neoplasms. Cancer. 2016;122(3):477–485. doi:10.1002/cncr.29753
   PubMed Web of Science ®Google Scholar
• Bradford A, Young K, Whitechurch A, et al. Disabled, invisible and dismissed—the lived experience of fatigue in people with myeloproliferative neoplasms. Cancer Rep. 2023;6(1):e1655.
   Google Scholar
• McFarland DC, Polizzi H, Mascarenhas J, et al. Psychological symptoms among patients with BCR-ABL-negative myeloproliferative neoplasms. J Natl Compr Canc Netw. 2016;14(12):1563–1570. doi:10.6004/jnccn.2016.0168
   PubMed Web of Science ®Google Scholar
• Roaldsnes C, Holst R, Frederiksen H, et al. Myeloproliferative neoplasms: trends in incidence, prevalence and survival in Norway. Eur J Haematol. 2017;98(1):85–93. doi:10.1111/ejh.12788
   PubMed Web of Science ®Google Scholar
• Thomas DM, Albritton KH, Ferrari A. Adolescent and young adult oncology: an emerging field. J Clin Oncol. 2010;28(32):4781–4782. doi:10.1200/JCO.2010.30.5128
   PubMed Web of Science ®Google Scholar
• Ferrari A, Stark D, Peccatori FA, et al. Adolescents and young adults (AYA) with cancer: a position paper from the AYA Working Group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). ESMO Open. 2021;6(2):100096. doi:10.1016/j.esmoop.2021.100096
   PubMed Web of Science ®Google Scholar
• Ianotto JC, Curto-Garcia N, Lauermanova M, et al. Characteristics and outcomes of patients with essential thrombocythemia or polycythemia vera diagnosed before 20 years of age: a systematic review. Haematologica. 2019;104(8):1580–1588. doi:10.3324/haematol.2018.200832
   PubMed Web of Science ®Google Scholar
• Sodergren SC, Husson O, Robinson J, et al. Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer. Qual Life Res. 2017;26(7):1659–1672. doi:10.1007/s11136-017-1520-x
   PubMed Web of Science ®Google Scholar
• Docherty SL, Kayle M, Maslow GR, et al. The adolescent and young adult with cancer: a developmental life course perspective. Semin Oncol Nurs. 2015;31(3):186–196. doi:10.1016/j.soncn.2015.05.006
   PubMed Web of Science ®Google Scholar
• Janssen SHM, van der Graaf WTA, van der Meer DJ, et al. Adolescent and young adult (AYA) cancer survivorship practices: an overview. Cancers. 2021;13(19):4847. doi:10.3390/cancers13194847
   PubMed Web of Science ®Google Scholar
• Tricco AC, Lillie E, Zarin W, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–473. doi:10.7326/M18-0850
   PubMed Web of Science ®Google Scholar
• McFarland DC, Shen MJ, Polizzi H, et al. Preferences of patients with myeloproliferative neoplasms for accepting anxiety or depression treatment. Psychosomatics. 2017;58(1):56–63. doi:10.1016/j.psym.2016.08.006
   PubMed Web of Science ®Google Scholar
• Bradford A. Living with MPN fatigue [thesis]. Melbourne, Australia: University of Melbourne; 2020.
   Google Scholar
• Huberty J, Eckert R, Larkey L, et al. Experiences of using a consumer-based mobile meditation app to improve fatigue in myeloproliferative patients: qualitative study. JMIR Cancer. 2019;5(2):e14292. doi:10.2196/14292
   PubMed Web of Science ®Google Scholar
• Clinton-McHarg T, Carey M, Sanson-Fisher R, et al. Anxiety and depression among haematological cancer patients attending treatment centres: prevalence and predictors. J Affect Disord. 2014;165:176–181. doi:10.1016/j.jad.2014.04.072
   PubMed Web of Science ®Google Scholar
• Brochmann N, Flachs EM, Christensen AI, et al. Anxiety and depression in patients with Philadelphia-negative myeloproliferative neoplasms: a nationwide population-based survey in Denmark. Clin Epidemiol. 2019;11:23–33. doi:10.2147/CLEP.S162688
   PubMed Web of Science ®Google Scholar
• Brucker PS, Yost K, Cashy J, et al. General population and cancer patient norms for the Functional Assessment of Cancer Therapy-General (FACT-G). Eval Health Prof. 2005;28(2):192–211. doi:10.1177/0163278705275341
   PubMed Web of Science ®Google Scholar
• Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand. 1983;67(6):361–370. doi:10.1111/j.1600-0447.1983.tb09716.x
   PubMed Web of Science ®Google Scholar
• Annunziata MA, Muzzatti B, Bidoli E, et al. Hospital Anxiety and Depression Scale (HADS) accuracy in cancer patients. Support Care Cancer. 2020;28(8):3921–3926. doi:10.1007/s00520-019-05244-8
   PubMed Web of Science ®Google Scholar
• Patterson P, D'Agostino NM, McDonald FEJ, et al. Screening for distress and needs: findings from a multinational validation of the adolescent and young adult psycho-oncology screening tool with newly diagnosed patients. Psychooncology. 2021;30(11):1849–1858. doi:10.1002/pon.5757
   PubMed Web of Science ®Google Scholar
• Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliat Support Care. 2014;12(3):183–188. doi:10.1017/S1478951512001083
   PubMed Web of Science ®Google Scholar
• Shah A, Hussain-Shamsy N, Strudwick G, et al. Digital health interventions for depression and anxiety among people with chronic conditions: scoping review. J Med Internet Res. 2022;24(9):e38030. doi:10.2196/38030
   PubMed Web of Science ®Google Scholar
• Wilkinson MD, Dumontier M, Aalbersberg IJ, et al. The FAIR guiding principles for scientific data management and stewardship. Sci Data. 2016;3(1):160018. doi:10.1038/sdata.2016.18
   PubMed Web of Science ®Google Scholar
• Absolom K, Holch P, Woroncow B, et al. Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes. Qual Life Res. 2015;24(5):1077–1085. doi:10.1007/s11136-014-0909-z
   PubMed Web of Science ®Google Scholar
• Crocker JC, Ricci-Cabello I, Parker A, et al. Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis. BMJ. 2018;363:k4738. doi:10.1136/bmj.k4738
   PubMedGoogle Scholar