BACKGROUND: Health-related quality of life (HRQoL) is an important patient-reported outcome for all cancer patients, including adult patients with rare solid cancers. However, current knowledge of HRQoL in this population is limited, which hinders the delivery of personalized care. This review aimed to explore the heterogeneity of HRQoL among adult patients with a solid rare cancer across the ten European Reference Network for Rare Adult Solid Cancers (EURACAN) domains and to summarize the HRQoL measures used in clinical research. METHODS: A systematic literature search was conducted to identify all clinical studies assessing HRQoL in adult patients with a solid rare cancer. Four databases (MEDLINE, PubMed, PsycINFO, and Web of Science/Scopus) were searched (February 2023). RESULTS: The search yielded 18,704 articles, of which 1416 articles were fully screened and 463 were eligible for analysis. Of these, 397 studies used generic tools to assess HRQoL, while 270 used tumor-specific instruments. Three EURACAN domains (sarcoma, endocrine tumors, and thoracic tumors) primarily assessed HRQoL using generic questionnaires. Additionally, the rare gynecological tumor, rare male genitourinary, and sarcoma EURACAN domains lacked specific HRQoL measures. Brain, head and neck, and uveal melanoma EURACAN domains used tumor- or domain-specific questionnaires in more than half of the studies. CONCLUSIONS: This state-of-the-art literature review shows that HRQoL assessment is gradually becoming more prevalent in adult solid rare cancer research. A combination of generic, tumor-specific, and domain-specific questionnaires across various rare cancer domains has proven effective in capturing a broad range of HRQoL issues. However, many EURACAN domains still lack specific strategies for assessing HRQoL, which limits the ability to fully understand and address patients' experiences. Future research should prioritize developing comprehensive and robust HRQoL measurement strategies and tools to enable meaningful clinical research and to ensure that the patient voice is incorporated in their clinical care.

Department of Gastrointestinal Oncology The Netherlands Cancer Institute Antoni van Leeuwenhoek 1066 CX Amsterdam The Netherlands

Department of Medical Oncology Erasmus MC Cancer Institute Erasmus University Medical Center 3015 GD Rotterdam The Netherlands

Department of Medical Oncology The Netherlands Cancer Institute Antoni van Leeuwenhoek 1066 CX Amsterdam The Netherlands

Department of Otorhinolaryngology Head and Neck Surgery Medical University of Innsbruck 6020 Innsbruck Austria

Department of Public Health Erasmus MC Cancer Institute Erasmus University Medical Center 3015 GD Rotterdam The Netherlands

Department of Surgical Oncology Erasmus MC Cancer Institute Erasmus University Medical Center 3015 GD Rotterdam The Netherlands

Department of Thoracic Oncology The Netherlands Cancer Institute Antoni van Leeuwenhoek 1066 CX Amsterdam The Netherlands

Fondazione IRCCS Istituto Nazionale dei Tumori 20133 Milan Italy

Gynaecologic Oncology Unit IRCCS Regina Elena National Cancer Institute 00144 Rome Italy

International Accreditation Office Masaryk Memorial Cancer Institute 7656 53 Brno Czech Republic

Psycho Oncology Services Oncoclinicas and Co Medica Scientia Innovation Research Sao Paulo 04543 906 Brazil

School of Health Sciences University of Southampton Southampton SO17 1BJ UK

Zobrazit více v PubMed

Gatta G., van der Zwan J.M., Casali P.G., Siesling S., Dei Tos A.P., Kunkler I., Otter R., Licitra L., Mallone S., Tavilla A., et al. Rare cancers are not so rare: The rare cancer burden in Europe. Eur. J. Cancer. 2011;47:2493–2511. doi: 10.1016/j.ejca.2011.08.008. PubMed DOI

Gatta G., Capocaccia R., Botta L., Mallone S., De Angelis R., Ardanaz E., Comber H., Dimitrova N., Leinonen M.K., Siesling S., et al. Burden and centralised treatment in Europe of rare tumours: Results of RARECAREnet—A population-based study. Lancet Oncol. 2017;18:1022–1039. doi: 10.1016/S1470-2045(17)30445-X. PubMed DOI

Blay J.Y., Casali P., Ray-Coquard I., Seckl M.J., Gietema J., de Herder W.W., Caplin M., Klümpen H.J., Glehen O., Wyrwicz L., et al. Management of patients with rare adult solid cancers: Objectives and evaluation of European reference networks (ERN) EURACAN. Lancet Reg. Health Eur. 2024;39:100861. doi: 10.1016/j.lanepe.2024.100861. PubMed DOI PMC

Pillai R.K., Jayasree K. Rare cancers: Challenges & issues. Indian J. Med. Res. 2017;145:17–27. PubMed PMC

Komatsubara K.M., Carvajal R.D. The promise and challenges of rare cancer research. Lancet Oncol. 2016;17:136–138. doi: 10.1016/S1470-2045(15)00485-4. PubMed DOI

Padilla C.S., Tesselaar M.E., van der Graaf W.T., Husson O. Measuring health-related quality of life in solid rare cancer patients: A study protocol. Rare. 2024;2:100012. doi: 10.1016/j.rare.2023.100012. DOI

EURACAN, About EURACAN. 2021. [(accessed on 21 January 2025)]. Available online: https://www.euracan.eu/

Bergerot C.D., Bergerot P.G., Philip E.J., De Domenico E.B.L., Manhaes M.F.M., Pedras R.N., Salgia M.M., Dizman N., Ashing K.T., Li M., et al. Assessment of distress and quality of life in rare cancers. Psychooncology. 2018;27:2740–2746. doi: 10.1002/pon.4873. PubMed DOI

Slade A., Isa F., Kyte D., Pankhurst T., Kerecuk L., Ferguson J., Lipkin G., Calvert M. Patient reported outcome measures in rare diseases: A narrative review. Orphanet. J. Rare Dis. 2018;13:61. doi: 10.1186/s13023-018-0810-x. PubMed DOI PMC

Aiyegbusi O.L., Isa F., Kyte D., Pankhurst T., Kerecuk L., Ferguson J., Lipkin G., Calvert M. Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: A qualitative study. Health Qual. Life Outcomes. 2020;18:177. doi: 10.1186/s12955-020-01438-5. PubMed DOI PMC

Eichler M., Hentschel L., Richter S., Hohenberger P., Kasper B., Andreou D., Pink D., Jakob J., Singer S., Grützmann R., et al. The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany-Cross-Sectional Results of a Nationwide Observational Study (PROSa) Cancers. 2020;12:3590. doi: 10.3390/cancers12123590. PubMed DOI PMC

den Hollander D., Fiore M., Martin-Broto J., Kasper B., Casado Herraez A., Kulis D., Nixon I., Sodergren S.C., Eichler M., van Houdt W.J., et al. Incorporating the Patient Voice in Sarcoma Research: How Can We Assess Health-Related Quality of Life in This Heterogeneous Group of Patients? A Study Protocol. Cancers. 2020;13:1. doi: 10.3390/cancers13010001. PubMed DOI PMC

Moher D., Liberati A., Tetzlaff J., Altman D.G., PRISMA Group Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Med. 2009;6:e1000097. doi: 10.1371/journal.pmed.1000097. PubMed DOI PMC

Ray-Coquard I., Pujade Lauraine E., Le Cesne A., Pautier P., Vacher Lavenue M.C., Trama A., Casali P., Coindre J.M., Blay J.Y. Improving treatment results with reference centres for rare cancers: Where do we stand? Eur. J. Cancer. 2017;77:90–98. doi: 10.1016/j.ejca.2017.02.006. PubMed DOI

de Heus E., van der Zwan J.M., Husson O., Frissen A.R., van Herpen C.M.L., Merkx M.A.W., Duijts S.F.A. Unmet supportive care needs of patients with rare cancer: A systematic review. Eur. J. Cancer Care. 2021;30:e13502. PubMed

Aaronson N.K., Ahmedzai S., Bergman B., Bullinger M., Cull A., Duez N.J., Filiberti A., Flechtner H., Fleishman S.B., de Haes J.C., et al. The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. J. Natl. Cancer Inst. 1993;85:365–376. doi: 10.1093/jnci/85.5.365. PubMed DOI

Cella D.F., Tulsky D.S., Gray G., Sarafian B., Linn E., Bonomi A., Silberman M., Yellen S.B., Winicour P., Brannon J. The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. J. Clin. Oncol. 1993;11:570–579. doi: 10.1200/JCO.1993.11.3.570. PubMed DOI

Rabin R., de Charro F. EQ-5D: A measure of health status from the EuroQol Group. Ann. Med. 2001;33:337–343. doi: 10.3109/07853890109002087. PubMed DOI

Ware J.E., Jr., Sherbourne C.D. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med. Care. 1992;30:473–483. doi: 10.1097/00005650-199206000-00002. PubMed DOI

Eliason L., Grant L., Francis A., Cardellino A., Culver K., Chawla S.P., Arbuckle R., Pokras S. Qualitative study to characterize patient experience and relevance of patient-reported outcome measures for patients with metastatic synovial sarcoma. J. Patient Rep. Outcomes. 2022;6:43. doi: 10.1186/s41687-022-00450-1. PubMed DOI PMC

Fauske L., Hompland I., Lorem G., Hall K.S., Bondevik H. Striving towards Normality in Daily Life: A Qualitative Study of Patients Living with Metastatic Gastrointestinal Stromal Tumour in Long-Term Clinical Remission. Sarcoma. 2020;2020:1814394. doi: 10.1155/2020/1814394. PubMed DOI PMC

Gough N., Koffman J., Ross J.R., Riley J., Judson I. Does palliative chemotherapy really palliate and are we measuring it correctly? A mixed methods longitudinal study of health related quality of life in advanced soft tissue sarcoma. PLoS ONE. 2019;14:e0210731. doi: 10.1371/journal.pone.0210731. PubMed DOI PMC

Vade L., Hompland I., Fauske L. Exploring Mentorship as a Novel Approach to Improving Quality of Life in Sarcoma Survivors: A Qualitative Pilot Study. Sarcoma. 2021;2021:2042785. doi: 10.1155/2021/2042785. PubMed DOI PMC

van Eck I., den Hollander D., Lidington E., Hentschel L., Eichler M., Salah S., Singer S., Pinto M., Fauske L., Fiore M., et al. Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group. J. Clin. Med. 2021;10:5334. doi: 10.3390/jcm10225334. PubMed DOI PMC

den Hollander D., Lidington E., Singer S., Sodergren S.C., Salah S., Fiore M., Benson C., Desar I.M.E., Burgers V.W.G., Husson O., et al. ‘I thought I had fibroids, and now I don’t’: A mixed method study on health-related quality of life in uterine sarcoma patients. Health Qual. Life Outcomes. 2022;20:65. doi: 10.1186/s12955-022-01971-5. PubMed DOI PMC

Davidson D., Barr R.D., Riad S., Griffin A.M., Chung P.W., Catton C.N., O′Sullivan B., Ferguson P.C., Davis A.M., Wunder J.S. Health-related quality of life following treatment for extremity soft tissue sarcoma. J. Surg. Oncol. 2016;114:821–827. doi: 10.1002/jso.24424. PubMed DOI

Weschenfelder W., Gast-Froehlich S., Spiegel C., Vogt M., Hofmann G.O. Factors influencing quality of life, function, reintegration and participation after musculoskeletal tumour operations. BMC Cancer. 2020;20:351. doi: 10.1186/s12885-020-06837-x. PubMed DOI PMC

Holzer L.A., Huyer N., Friesenbichler J., Leithner A. Body image, self-esteem, and quality of life in patients with primary malignant bone tumors. Arch. Orthop. Trauma Surg. 2020;140:1–10. doi: 10.1007/s00402-019-03205-8. PubMed DOI PMC

van Dongen J., de Heus E., Eickholt L., Schrieks M., Zantingh I., Brouwer O.R., Oonk M.H.M., Grotenhuis B.A., Ezendam N.P.M., Duijts S.F.A. Challenges and controversies patients and (health care) professionals experience in managing vaginal, vulvar, penile or anal cancer: The SILENCE study. Eur. J. Cancer Care. 2022;31:e13676. doi: 10.1111/ecc.13676. PubMed DOI PMC

Forner D.M., Dakhil R., Lampe B. Can clitoris-conserving surgery for early vulvar cancer improve the outcome in terms of quality of life and sexual sensation? Eur. J. Obstet. Gynecol. Reprod. Biol. 2013;171:150–153. doi: 10.1016/j.ejogrb.2013.08.028. PubMed DOI

Forner D.M., Dakhil R., Lampe B. Quality of life and sexual function after surgery in early stage vulvar cancer. Eur. J. Surg. Oncol. 2015;41:40–45. doi: 10.1016/j.ejso.2014.10.050. PubMed DOI

Basen-Engquist K., Bodurka-Bevers D., Fitzgerald M.A., Webster K., Cella D., Hu S., Gershenson D.M. Reliability and validity of the functional assessment of cancer therapy-ovarian. J. Clin. Oncol. 2001;19:1809–1817. doi: 10.1200/JCO.2001.19.6.1809. PubMed DOI

Ferracini A.C., Pereira G., de Souza C.M., Dos Santos T.F.C., Sarian L.O., Derchain S., Mazzola P.G. Physical and functional well-being and symptoms of ovarian cancer in women undergoing first-line of chemotherapy: A one-year follow-up. Support Care Cancer. 2021;29:7421–7430. doi: 10.1007/s00520-021-06298-3. PubMed DOI

Center C.N. Care Notebook (A Questionnaire For Cancer Patients Using Outpatient Clinic) [(accessed on 21 January 2025)]. Available online: http://www.care-notebook.com/en/index.html.

Tsubamoto H., Ueda T., Inoue K., Isono-Nakata R., Saeki S., Kato Y., Shibahara H. Effects of leuprorelin for the treatment of recurrent gynecological cancer by assessment including self-administered quality-of-life questionnaire. J. Obstet. Gynaecol. Res. 2019;45:203–209. doi: 10.1111/jog.13784. PubMed DOI

Zaid T., Burzawa J., Basen-Engquist K., Bodurka D.C., Ramondetta L.M., Brown J., Frumovitz M. Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study. Gynecol. Oncol. 2014;132:149–153. doi: 10.1016/j.ygyno.2013.10.015. PubMed DOI PMC

Witty K., Branney P., Evans J., Bullen K., White A., Eardley I. The impact of surgical treatment for penile cancer—patients’ perspectives. Eur. J. Oncol. Nurs. 2013;17:661–667. doi: 10.1016/j.ejon.2013.06.004. PubMed DOI

Nezu K., Yamashita S., Kakimoto K., Uemura M., Kishida T., Kawai K., Nakamura T., Goto T., Osawa T., Nishimura K., et al. Association of financial toxicity with quality of life in testicular cancer survivors. Int. J. Urol. 2022;29:1526–1534. doi: 10.1111/iju.15039. PubMed DOI

Heinemann L.A. Aging Males’ Symptoms scale: A standardized instrument for the practice. J. Endocrinol. Investig. 2005;28:34–38. PubMed

Flechtner H.H., Fischer F., Albers P., Hartmann M., Siener R., German Testicular Cancer Study Group Quality-of-Life Analysis of the German Prospective Multicentre Trial of Single-cycle Adjuvant BEP Versus Retroperitoneal Lymph Node Dissection in Clinical Stage I Nonseminomatous Germ Cell Tumours. Eur. Urol. 2016;69:518–525. doi: 10.1016/j.eururo.2015.11.007. PubMed DOI

Khanal N., Ahmed S.S., Kalra M., Miller T.J., Brames M.J., Stump T.E., Monahan P., Hanna N.H., Einhorn L.H. The effects of hypogonadism on quality of life in survivors of germ cell tumors treated with surgery alone versus surgery plus platinum-based chemotherapy. Support Care Cancer. 2020;28:3165–3170. doi: 10.1007/s00520-019-05117-0. PubMed DOI

Jovanovski A., Zugna D., Di Cuonzo D., Lista P., Ciuffreda L., Merletti F., Rosato R., Richiardi L. Quality of life among germ-cell testicular cancer survivors: The effect of time since cancer diagnosis. PLoS ONE. 2021;16:e0258257. doi: 10.1371/journal.pone.0258257. PubMed DOI PMC

Hartung T.J., Mehnert A., Friedrich M., Hartmann M., Vehling S., Bokemeyer C., Oechsle K. Age-related variation and predictors of long-term quality of life in germ cell tumor survivors. Urol. Oncol. 2016;34:60.e1–60.e6. doi: 10.1016/j.urolonc.2015.09.005. PubMed DOI

Schmidt A.H., Høyer M., Jensen B.F.S., Agerbaek M. Limited post-chemotherapy retroperitoneal resection of residual tumour in non-seminomatous testicular cancer: Complications, outcome and quality of life. Acta Oncol. 2018;57:1084–1093. doi: 10.1080/0284186X.2018.1449249. PubMed DOI

Perez J., Chavarriaga J., Ortiz A., Orrego P., Rueda S., Quiroga W., Fernandez N., Patiño G., Tobar V., Villareal N., et al. Oncological and Functional Outcomes After Organ-Sparing Plastic Reconstructive Surgery for Penile Cancer. Urology. 2020;142:161–165.e1. doi: 10.1016/j.urology.2020.03.058. PubMed DOI

Chavarriaga J., Becerra L., Camacho D., Godoy F., Forero J., Cabrera M., López-de-Mesa B., Ramirez A., Suso-Palau D., Varela R. Inverted urethral flap reconstruction after partial penectomy: Long-term oncological and functional outcomes. Urol. Oncol. 2022;40:169.e13–169.e20. doi: 10.1016/j.urolonc.2022.02.006. PubMed DOI

Hojer E.G., Kreiberg M., Dehlendorff C., Jørgensen N., Juul A., Lauritsen J., Wagner T., Rosenvilde J., Daugaard G., Bandak M. Effect of Testosterone Replacement Therapy on Quality of Life and Sexual Function in Testicular Cancer Survivors With Mild Leydig Cell Insufficiency: Results From a Randomized Double-blind Trial. Clin. Genitourin Cancer. 2022;20:334–343. doi: 10.1016/j.clgc.2022.03.012. PubMed DOI

Skott J.W., Lauritsen J., Kreiberg M., Daugaard G., Bandak M. Quality of Life in Long-Term Testicular Cancer Survivors with Compensated Leydig Cell Dysfunction. Clin. Genitourin Cancer. 2019;17:e65–e71. doi: 10.1016/j.clgc.2018.09.004. PubMed DOI

Swinburn P., Wang J., Chandiwana D., Mansoor W., Lloyd A. Elicitation of health state utilities in neuroendocrine tumours. J. Med. Econ. 2012;15:681–687. doi: 10.3111/13696998.2012.670175. PubMed DOI

Traub-Weidinger T., Raderer M., Uffmann M., Angelberger P., Kurtaran A., Leimer M., Preitfellner J., Dudczak R., Virgolini I. Improved quality of life in patients treated with Peptide radionuclides. World J. Nucl. Med. 2011;10:115–121. doi: 10.4103/1450-1147.89779. PubMed DOI PMC

Pavel M.E., Singh S., Strosberg J.R., Bubuteishvili-Pacaud L., Degtyarev E., Neary M.P., Carnaghi C., Tomasek J., Wolin E., Raderer M., et al. Health-related quality of life for everolimus versus placebo in patients with advanced, non-functional, well-differentiated gastrointestinal or lung neuroendocrine tumours (RADIANT-4): A multicentre, randomised, double-blind, placebo-controlled, phase 3 trial. Lancet Oncol. 2017;18:1411–1422. PubMed

Hummelshoj N.E., Gronbaek H., Bager P., Tabaksblat E., Dam G. Fatigue and quality of life in patients with neuroendocrine neoplasia. Scand J. Gastroenterol. 2023;58:45–53. doi: 10.1080/00365521.2022.2100228. PubMed DOI

Beesley V.L., Burge M., Dumbrava M., Callum J., Neale R.E., Wyld D.K. Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours. Support Care Cancer. 2018;26:3153–3161. doi: 10.1007/s00520-018-4166-5. PubMed DOI

Zandee W.T., Brabander T., Blažević A., Kam B.L.R., Teunissen J.J.M., Feelders R.A., Hofland J., de Herder W.W. Symptomatic and Radiological Response to 177Lu-DOTATATE for the Treatment of Functioning Pancreatic Neuroendocrine Tumors. J. Clin. Endocrinol. Metab. 2019;104:1336–1344. doi: 10.1210/jc.2018-01991. PubMed DOI

Patel N., Lie X., Gwaltney C., Rokutanda N., Barzi A., Melisi D., Macarulla T., Ueno M., Kim S.T., Meyers O., et al. Understanding Patient Experience in Biliary Tract Cancer: A Qualitative Patient Interview Study. Oncol. Ther. 2021;9:557–573. doi: 10.1007/s40487-021-00159-z. PubMed DOI PMC

Mortensen G.L., Lundby L. Patients use normalisation techniques to cope with the quality-of-life effects of anal cancer. Dan. Med. J. 2015;62:A5020. PubMed

Bourdais R., Achkar S., Espenel S., Bockel S., Chauffert-Yvart L., de Mellis F.R., Ta M.H., Boukhelif W., Durand-Labrunie J., Burtin P., et al. Pulse-dose-rate interstitial brachytherapy in anal squamous cell carcinoma: Clinical outcomes and patients’ health quality perception. J. Contemp. Brachytherapy. 2021;13:263–272. doi: 10.5114/jcb.2021.106247. PubMed DOI PMC

Atkinson T.M., Palefsky J., Li Y., Webb A., Berry J.M., Goldstone S., Levine R., Wilkin T.J., Bucher G., Cella D., et al. Reliability and between-group stability of a health-related quality of life symptom index for persons with anal high-grade squamous intraepithelial lesions: An AIDS Malignancy Consortium Study (AMC-A03) Qual. Life Res. 2019;28:1265–1269. doi: 10.1007/s11136-018-2089-8. PubMed DOI PMC

Corrigan K.L., De B., Rooney M.K., Ludmir E.B., Das P., Smith G.L., Taniguchi C.M., Minsky B.D., Koay E.J., Koong A.C., et al. Patient-Reported Outcomes After Chemoradiation in Patients with Anal Cancer: A Qualitative Analysis. Adv. Radiat. Oncol. 2022;7:100986. doi: 10.1016/j.adro.2022.100986. PubMed DOI PMC

Axelsson A., Johansson M., Bock D., Haglind E., de la Croix H., Nilsson P.J., Angenete E. Patient-reported QoL in anal cancer survivors 3 and 6 years after treatment-results from the Swedish national ANCA study. Support. Care Cancer. 2022;30:4169–4178. doi: 10.1007/s00520-021-06769-7. PubMed DOI PMC

Sodergren S.C., Johnson C.D., Gilbert A., Darlington A.S., Cocks K., Guren M.G., Rivin Del Campo E., Brannan C., Christensen P., Chu W., et al. International Validation of the EORTC QLQ-ANL27, a Field Study to Test the Anal Cancer-Specific Health-Related Quality-of-Life Questionnaire. Int. J. Radiat. Oncol. Biol. Phys. 2023;115:1155–1164. doi: 10.1016/j.ijrobp.2022.11.002. PubMed DOI

Whistance R.N., Conroy T., Chie W., Costantini A., Sezer O., Koller M., Johnson C.D., Pilkington S.A., Arraras J., Ben-Josef E., et al. Clinical and psychometric validation of the EORTC QLQ-CR29 questionnaire module to assess health-related quality of life in patients with colorectal cancer. Eur. J. Cancer. 2009;45:3017–3026. doi: 10.1016/j.ejca.2009.08.014. PubMed DOI

Knowles G., Haigh R., McLean C., Phillips H. Late effects and quality of life after chemo-radiation for the treatment of anal cancer. Eur. J. Oncol. Nurs. 2015;19:479–485. doi: 10.1016/j.ejon.2015.02.007. PubMed DOI

Pedersen T.B., Juvik A.F., Koren S.F., Gocht-Jensen P., Klein M.F. Quality of life following salvage surgery for squamous cell carcinoma of the anus. Eur. J. Surg. Oncol. 2019;45:995–998. doi: 10.1016/j.ejso.2019.01.181. PubMed DOI

Joseph K., Vos L.J., Warkentin H., Paulson K., Polkosnik L.A., Usmani N., Tankel K., Severin D., Nijjar T., Schiller D., et al. Patient reported quality of life after helical IMRT based concurrent chemoradiation of locally advanced anal cancer. Radiother. Oncol. 2016;120:228–233. doi: 10.1016/j.radonc.2016.06.020. PubMed DOI

Welzel G., Hägele V., Wenz F., Mai S.K. Quality of life outcomes in patients with anal cancer after combined radiochemotherapy. Strahlenther. Onkol. 2011;187:175–182. doi: 10.1007/s00066-010-2175-5. PubMed DOI

Tang Y., Crane C.H., Eng C., Minsky B.D., Delclos M.E., Krishnan S., Malatek D., Gould M.S., Das P. Quality of life after intensity-modulated radiation therapy for anal cancer. J. Radiat. Oncol. 2015;4:291–298. doi: 10.1007/s13566-015-0209-4. DOI

Fakhrian K., Sauer T., Dinkel A., Klemm S., Schuster T., Molls M., Geinitz H. Chronic adverse events and quality of life after radiochemotherapy in anal cancer patients. A single institution experience and review of the literature. Strahlenther. Onkol. 2013;189:486–494. doi: 10.1007/s00066-013-0314-5. PubMed DOI

De B., Corrigan K.L., Rooney M.K., Ludmir E.B., Das P., Smith G.L., Taniguchi C.M., Minsky B.D., Koay E.J., Koong A., et al. Patient-Reported Bowel and Urinary Function in Long-Term Survivors of Squamous Cell Carcinoma of the Anus Treated with Definitive Intensity Modulated Radiation Therapy and Concurrent Chemotherapy. Int. J. Radiat. Oncol. Biol. Phys. 2022;114:78–88. doi: 10.1016/j.ijrobp.2022.05.009. PubMed DOI

Somjaivong B., Thanasilp S., Preechawong S., Sloan R. The influence of symptoms, social support, uncertainty, and coping on health-related quality of life among cholangiocarcinoma patients in northeast Thailand. Cancer Nurs. 2011;34:434–442. doi: 10.1097/NCC.0b013e31820d0c3f. PubMed DOI

Woradet S., Promthet S., Songserm N., Parkin D.M. Factors Affecting Health-Related Quality of Life in Patients with Cholangiocarcinoma in the Northeastern Region of Thailand. Cancer Nurs. 2015;38:E46–E51. doi: 10.1097/NCC.0000000000000233. PubMed DOI

Sangruangake M., Summart U., Songthamwat M., Sangchart B. The Relationship between Unmet Need, Physical Symptoms, Psychological Well-Being and Health-Related Quality of Life in Cholangiocarcinoma Survivors. Asian Pac. J. Cancer Prev. 2022;23:2821–2828. doi: 10.31557/APJCP.2022.23.8.2821. PubMed DOI PMC

Kaupp-Roberts S.D., Yadegarfar G., Friend E., O′Donnell C.M., Valle J.W., Byrne C., Bahar I., Finch-Jones M., Gillmore R., Johnson C.D., et al. Validation of the EORTC QLQ-BIL21 questionnaire for measuring quality of life in patients with cholangiocarcinoma and cancer of the gallbladder. Br. J. Cancer. 2016;115:1032–1038. doi: 10.1038/bjc.2016.284. PubMed DOI PMC

Steenaard R.V., Kerkhofs T.M.A., Zijlstra M., Mols F., Kerstens M.N., Timmers H.J.L.M., van Leeuwaarde R.S., Dreijerink K.M.A., Eekhoff E.M.W., Nieveen van Dijkum E.J.M., et al. Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry. Cancers. 2022;14:1366. doi: 10.3390/cancers14061366. PubMed DOI PMC

Steenaard R.V., Kremers M.N.T., Michon L.A., Zijlstra M., Haak H.R. Patient and Partner Perspectives on Health-Related Quality of Life in Adrenocortical Carcinoma. J. Endocr. Soc. 2020;4:bvaa040. doi: 10.1210/jendso/bvaa040. PubMed DOI PMC

Diamond-Rossi S.A., Jonklaas J., Jensen R.E., Kuo C., Stearns S., Esposito G., Davidson B.J., Luta G., Bloom G., Graves K.D. Looking under the hood of “the Cadillac of cancers”: Radioactive iodine-related craniofacial side effects among patients with thyroid cancer. J. Cancer Surviv. 2020;14:847–857. doi: 10.1007/s11764-020-00897-5. PubMed DOI PMC

Doubleday A.R., Robbins S.E., Macdonald C.L., Elfenbein D.M., Connor N.P., Sippel R.S. What is the experience of our patients with transient hypoparathyroidism after total thyroidectomy? Surgery. 2021;169:70–76. doi: 10.1016/j.surg.2020.04.029. PubMed DOI PMC

Singer S., Husson O., Tomaszewska I.M., Locati L.D., Kiyota N., Scheidemann-Wesp U., Hofmeister D., Winterbotham M., Brannan C., Araújo C., et al. Quality-of-Life Priorities in Patients with Thyroid Cancer: A Multinational European Organisation for Research and Treatment of Cancer Phase I Study. Thyroid. 2016;26:1605–1613. doi: 10.1089/thy.2015.0640. PubMed DOI

Nickel B., Tan T., Cvejic E., Baade P., McLeod D.S.A., Pandeya N., Youl P., McCaffery K., Jordan S. Health-Related Quality of Life After Diagnosis and Treatment of Differentiated Thyroid Cancer and Association With Type of Surgical Treatment. JAMA Otolaryngol. Head Neck Surg. 2019;145:231–238. doi: 10.1001/jamaoto.2018.3870. PubMed DOI PMC

Gallop K., Kerr C., Simmons S., McIver B., Cohen E.E. A qualitative evaluation of the validity of published health utilities and generic health utility measures for capturing health-related quality of life (HRQL) impact of differentiated thyroid cancer (DTC) at different treatment phases. Qual. Life Res. 2015;24:325–338. doi: 10.1007/s11136-014-0776-7. PubMed DOI

Bozec A., Boscagli M., Serris M., Chamorey E., Dassonville O., Poissonnet G., Culié D., Scheller B., Benezery K., Gal J. Long-term functional and quality of life outcomes in laryngectomized patients after successful voice restoration using tracheoesophageal prostheses. Surg. Oncol. 2021;38:101580. doi: 10.1016/j.suronc.2021.101580. PubMed DOI

Bachmann A.S., Zaunbauer A.C., Tolke A.M., Siniatchkin M., Kluck C., Wiltfang J., Hertrampf K. Well-being and quality of life among oral cancer patients—Psychological vulnerability and coping responses upon entering initial treatment. J. Cranio-Maxillofac. Surg. 2018;46:1637–1644. doi: 10.1016/j.jcms.2018.05.042. PubMed DOI

Handschel J., Naujoks C., Hofer M., Krüskemper G. Psychological aspects affect quality of life in patients with oral squamous cell carcinomas. Psychooncology. 2013;22:677–682. doi: 10.1002/pon.3052. PubMed DOI

Linsen S.S., Gellrich N.C., Kruskemper G. Age- and localization-dependent functional and psychosocial impairments and health related quality of life six months after OSCC therapy. Oral. Oncol. 2018;81:61–68. doi: 10.1016/j.oraloncology.2018.04.011. PubMed DOI

Loimu V., Mäkitie A.A., Bäck L.J., Sintonen H., Räsänen P., Roine R., Saarilahti K. Health-related quality of life of head and neck cancer patients with successful oncological treatment. Eur. Arch. Otorhinolaryngol. 2015;272:2415–2423. doi: 10.1007/s00405-014-3169-1. PubMed DOI

Nascimento M.L., Farias A.B., Carvalho A.T., Albuquerque R.F., Ribeiro L.N., Leao J.C., Silva I.H. Impact of xerostomia on the quality of life of patients submitted to head and neck radiotherapy. Med. Oral. Patol. Oral. Cir. Bucal. 2019;24:e770–e775. doi: 10.4317/medoral.23131. PubMed DOI PMC

Achim V., Bolognone R.K., Palmer A.D., Graville D.J., Light T.J., Li R., Gross N., Andersen P.E., Clayburgh D. Long-term Functional and Quality-of-Life Outcomes After Transoral Robotic Surgery in Patients With Oropharyngeal Cancer. JAMA Otolaryngol. Head Neck Surg. 2018;144:18–27. doi: 10.1001/jamaoto.2017.1790. PubMed DOI PMC

Glicksman J.T., Parasher A.K., Brooks S.G., Workman A.D., Lambert J.L., Bergman J.E., Palmer J.N., Adappa N.D. Sinonasal quality of life after endoscopic resection of malignant sinonasal and skull base tumors. Laryngoscope. 2018;128:789–793. doi: 10.1002/lary.26833. PubMed DOI

Derousseau T., Manjunath L., Harrow B., Zhang S., Batra P.S. Long-term changes in quality of life after endoscopic resection of sinonasal and skull-base tumors. Int. Forum. Allergy Rhinol. 2015;5:1129–1135. doi: 10.1002/alr.21608. PubMed DOI

Pan X.B., Huang S.T., Chen K.H., Jiang Y.M., Ma J.L., Qu S., Li L., Chen L., Zhu X.D. Intensity-modulated radiotherapy provides better quality of life than two-dimensional conventional radiotherapy for patients with stage II nasopharyngeal carcinoma. Oncotarget. 2017;8:46211–46218. doi: 10.18632/oncotarget.17582. PubMed DOI PMC

Soldera S.V., Shakik S., Naik H., Moskovitz M., Chen J., Mittmann N., Xu W., Hope A., Bezjak A., Parajian A., et al. Favourable health-related quality of life reported in survivors of thymic malignancies. Eur. J. Cardiothorac. Surg. 2019;55:292–299. doi: 10.1093/ejcts/ezy259. PubMed DOI

Kao S.C., Vardy J., Harvie R., Chatfield M., van Zandwijk N., Clarke S., Pavlakis N. Health-related quality of life and inflammatory markers in malignant pleural mesothelioma. Support Care Cancer. 2013;21:697–705. doi: 10.1007/s00520-012-1569-6. PubMed DOI

Ambrogi V., Baldi A., Schillaci O., Mineo T.C. Clinical impact of extrapleural pneumonectomy for malignant pleural mesothelioma. Ann. Surg. Oncol. 2012;19:1692–1699. doi: 10.1245/s10434-011-2171-8. PubMed DOI

Eberst G., Anota A., Scherpereel A., Mazieres J., Margery J., Greillier L., Audigier-Valette C., Moro-Sibilot D., Molinier O., Léna H., et al. Health-Related Quality of Life Impact from Adding Bevacizumab to Cisplatin-Pemetrexed in Malignant Pleural Mesothelioma in the MAPS IFCT-GFPC-0701 Phase III Trial. Clin. Cancer Res. 2019;25:5759–5765. doi: 10.1158/1078-0432.CCR-18-2860. PubMed DOI

Kopp B.C., Crump R.T., Weis E. The use of semistructured interviews to assess quality of life impacts for patients with uveal melanoma. Can. J. Ophthalmol. 2017;52:181–185. doi: 10.1016/j.jcjo.2016.10.005. PubMed DOI

Bharmal M., Nolte S., Lebbé C., Mortier L., Brohl A.S., Fazio N., Grob J.J., Pusceddu S., Hanna G.J., Hassel J.C., et al. Health-related quality of life trajectory of treatment-naive patients with Merkel cell carcinoma receiving avelumab. Future Oncol. 2020;16:2089–2099. doi: 10.2217/fon-2020-0426. PubMed DOI PMC

Damato B., Hope-Stone L., Cooper B., Brown S.L., Salmon P., Heimann H., Dunn L.B. Patient-reported Outcomes and Quality of Life After Treatment of Choroidal Melanoma: A Comparison of Enucleation Versus Radiotherapy in 1596 Patients. Am. J. Ophthalmol. 2018;193:230–251. doi: 10.1016/j.ajo.2018.03.015. PubMed DOI

Lieb M., Tagay S., Breidenstein A., Hepp T., Le Guin C.H.D., Scheel J., Lohmann D.R., Bornfeld N., Teufel M., Erim Y. Psychosocial impact of prognostic genetic testing in uveal melanoma patients: A controlled prospective clinical observational study. BMC Psychol. 2020;8:8. doi: 10.1186/s40359-020-0371-3. PubMed DOI PMC

Hope-Stone L., Brown S.L., Heimann H., Damato B., Salmon P. Two-year patient-reported outcomes following treatment of uveal melanoma. Eye. 2016;30:1598–1605. doi: 10.1038/eye.2016.188. PubMed DOI PMC

Klingenstein A., Samel C., Garip-Kuebler A., Miller C., Liegl R.G., Priglinger S.G., Foerster P.I. The national comprehensive cancer network distress thermometer as a screening tool for the evaluation of quality of life in uveal melanoma patients. Acta Ophthalmol. 2020;98:e381–e387. doi: 10.1111/aos.14277. PubMed DOI

Frenkel S., Rosenne H., Briscoe D., Hendler K., Bereket R., Molcho M., Pe′er J. Long-term uveal melanoma survivors: Measuring their quality of life. Acta Ophthalmol. 2018;96:e421–e426. doi: 10.1111/aos.13655. PubMed DOI

Barker C.A., Kozlova A., Shoushtari A.N., Hay J.L., Francis J.H., Abramson D.H. Quality of Life Concerns in Patients with Uveal Melanoma after Initial Diagnosis. Ocul. Oncol. Pathol. 2020;6:184–195. doi: 10.1159/000502549. PubMed DOI PMC

Gabel N., Altshuler D.B., Brezzell A., Briceño E.M., Boileau N.R., Miklja Z., Kluin K., Ferguson T., McMurray K., Wang L., et al. Health Related Quality of Life in Adult Low and High-Grade Glioma Patients Using the National Institutes of Health Patient Reported Outcomes Measurement Information System (PROMIS) and Neuro-QOL Assessments. Front. Neurol. 2019;10:212. doi: 10.3389/fneur.2019.00212. PubMed DOI PMC

Piil K., Christensen I.J., Grunnet K., Poulsen H.S. Health-related quality of life and caregiver perspectives in glioblastoma survivors: A mixed-methods study. BMJ Support Palliat. Care. 2022;12:e846–e854. doi: 10.1136/bmjspcare-2019-001777. PubMed DOI

den Hollander D., Van der Graaf W.T.A., Fiore M., Kasper B., Singer S., Desar I.M.E., Husson O. Unravelling the heterogeneity of soft tissue and bone sarcoma patients’ health-related quality of life: A systematic literature review with focus on tumour location. ESMO Open. 2020;5:e000914. doi: 10.1136/esmoopen-2020-000914. PubMed DOI PMC

Moore A., Bennett B., Taylor-Stokes G., McDonald L., Daumont M.J. Malignant pleural mesothelioma: Treatment patterns and humanistic burden of disease in Europe. BMC Cancer. 2022;22:693. doi: 10.1186/s12885-022-09750-7. PubMed DOI PMC

Vinik E., Carlton C.A., Silva M.P., Vinik A.I. Development of the Norfolk quality of life tool for assessing patients with neuroendocrine tumors. Pancreas. 2009;38:e87–e95. doi: 10.1097/MPA.0b013e31819b6441. PubMed DOI

Lewis A.R., Wang X., Magdalani L., D′Arienzo P., Bashir C., Mansoor W., Hubner R., Valle J.W., McNamara M.G. Health-related quality of life, anxiety, depression and impulsivity in patients with advanced gastroenteropancreatic neuroendocrine tumours. World J. Gastroenterol. 2018;24:671–679. doi: 10.3748/wjg.v24.i6.671. PubMed DOI PMC

Laing E., Gough K., Krishnasamy M., Michael M., Kiss N. Prevalence of malnutrition and nutrition-related complications in patients with gastroenteropancreatic neuroendocrine tumours. J. Neuroendocrinol. 2022;34:e13116. doi: 10.1111/jne.13116. PubMed DOI

Adams J.R., Ray D., Willmon R., Pulgar S., Dasari A. Living with Neuroendocrine Tumors: Assessment of Quality of Life Through a Mobile Application. JCO Clin. Cancer Inform. 2019;3:1–10. doi: 10.1200/CCI.19.00025. PubMed DOI PMC

Lamarca A., McCallum L., Nuttall C., Barriuso J., Backen A., Frizziero M., Leon R., Mansoor W., McNamara M.G., Hubner R.A., et al. Somatostatin analogue-induced pancreatic exocrine insufficiency in patients with neuroendocrine tumors: Results of a prospective observational study. Expert Rev. Gastroenterol. Hepatol. 2018;12:723–731. doi: 10.1080/17474124.2018.1489232. PubMed DOI

Piccinin C., Basch E., Bhatnagar V., Calvert M., Campbell A., Cella D., Cleeland C.S., Coens C., Darlington A.S., Dueck A.C., et al. Recommendations on the use of item libraries for patient-reported outcome measurement in oncology trials: Findings from an international, multidisciplinary working group. Lancet Oncol. 2023;24:e86–e95. doi: 10.1016/S1470-2045(22)00654-4. PubMed DOI

Weidema M.E., Husson O., van der Graaf W.T.A., Leonard H., de Rooij B.H., Hartle DeYoung L., Desar I.M.E., van de Poll-Franse L.V. Health-related quality of life and symptom burden of epithelioid hemangioendothelioma patients: A global patient-driven Facebook study in a very rare malignancy. Acta Oncol. 2020;59:975–982. doi: 10.1080/0284186X.2020.1766696. PubMed DOI