Unravelling the heterogeneity of soft tissue and bone sarcoma patients' health-related quality of life: a systematic literature review with focus on tumour location

Dide den Hollander, Winette T A Van der Graaf, Marco Fiore, Bernd Kasper, Susanne Singer, Ingrid M E Desar, Olga Husson, Dide den Hollander, Winette T A Van der Graaf, Marco Fiore, Bernd Kasper, Susanne Singer, Ingrid M E Desar, Olga Husson

Abstract

Patients with sarcoma experience many physical and psychological symptoms, adversely affecting their health-related quality of life (HRQoL). HRQoL assessment is challenging due to the diversity of the disease. This review aims to unravel the heterogeneity of HRQoL of patients with sarcoma with regard to tumour location and to summarise the used measures in research. English-language literature from four databases published between January 2000 and April 2019 was reviewed. Studies that described adult sarcoma HRQoL outcomes were included and classified according to primary sarcoma location. Eighty-seven articles met the inclusion criteria covering sarcoma of the extremities (n=35), pelvis and axial skeleton (n=9), pelvis and extremities (n=5), head and neck (n=4), retroperitoneum (n=2) and multiple sarcoma locations (n=33), respectively. Urogenital and thoracic sarcoma were lacking. Fifty-four different questionnaires were used, most often cancer-generic or generic HRQoL questionnaires. Patients with sarcoma reported lower HRQoL than the general population. Distinctive patterns of HRQoL outcomes according to tumour location regarding symptoms, physical functioning, disability and psychosocial well-being were identified. In metastatic sarcoma, mostly constitutional symptoms were present. To comprehensively assess HRQoL, a sarcoma-specific measurement strategy should be developed and used covering the heterogeneity of sarcoma including location-specific issues to improve personalised HRQoL assessment in future research and clinical practice.

Keywords: bone sarcoma; health-related quality of life; patient-reported outcomes; soft tissue sarcoma.

Conflict of interest statement

Competing interests: None declared.

© Author (s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. Published by BMJ on behalf of the European Society for Medical Oncology.

Figures

Figure 1
Figure 1
Selection procedure.

References

    1. WHO Classification of Tumours Editorial Board Soft tissue and bone tumours, who classification of tumour. 5th edn WHO Press, 2020.
    1. RARECAREnet Information network on rare cancer. Available: [Accessed 30 Mar 2020].
    1. Stiller CA, Botta L, Brewster DH, et al. . Survival of adults with cancers of bone or soft tissue in Europe—Report from the EUROCARE-5 study. Cancer Epidemiol 2018;56:146–53. 10.1016/j.canep.2018.08.010
    1. Stiller CA, Trama A, Serraino D, et al. . Descriptive epidemiology of sarcomas in Europe: report from the RARECARE project. Eur J Cancer 2013;49:684–95. 10.1016/j.ejca.2012.09.011
    1. Gage MM, Nagarajan N, Ruck JM, et al. . Sarcomas in the United States: recent trends and a call for improved staging. Oncotarget 2019;10:2462–74. 10.18632/oncotarget.26809
    1. Savina M, Le Cesne A, Blay J-Y, et al. . Patterns of care and outcomes of patients with metastatic soft tissue sarcoma in a real-life setting: the METASARC observational study. BMC Med 2017;15:78 10.1186/s12916-017-0831-7
    1. Chan A, Lim E, Ng T, et al. . Symptom burden and medication use in adult sarcoma patients. Support Care Cancer 2015;23:1709–17. 10.1007/s00520-014-2533-4
    1. Tang MH, Pan DJW, Castle DJ, et al. . A systematic review of the recent quality of life studies in adult extremity sarcoma survivors. Sarcoma 2012;2012:1–15. 10.1155/2012/171342
    1. Kluetz PG, Slagle A, Papadopoulos EJ, et al. . Focusing on core patient-reported outcomes in cancer clinical trials: symptomatic adverse events, physical function, and disease-related symptoms. Clinical Cancer Research 2016;22:1553–8. 10.1158/1078-0432.CCR-15-2035
    1. Stewart AL, Ware JE. Measuring functioning and well-being: the medical outcomes study approach. Durham and London: Duke university press, 1992: 2.
    1. Berry DL, Blumenstein BA, Halpenny B, et al. . Enhancing patient-provider communication with the electronic self-report assessment for cancer: a randomized trial. JCO 2011;29:1029–35. 10.1200/JCO.2010.30.3909
    1. Basch E, Deal AM, Kris MG, et al. . Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. JCO 2016;34:557–65. 10.1200/JCO.2015.63.0830
    1. Winnette R, Hess LM, Nicol SJ, et al. . The patient experience with soft tissue sarcoma: a systematic review of the literature. Patient 2017;10:153–62. 10.1007/s40271-016-0200-1
    1. McDonough J, Eliott J, Neuhaus S, et al. . Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review. Psychooncology 2019;28:653–64. 10.1002/pon.5007
    1. Storey L, Fern LA, Martins A, et al. . A critical review of the impact of sarcoma on psychosocial wellbeing. Sarcoma 2019;2019:1–18. 10.1155/2019/9730867
    1. Fiore M, Callegaro D, Lenna S, et al. . Quality of life (QOL) and pain in primary retroperitoneal sarcoma (Rps): preliminary data from a prospective observational study. Ann Surg Oncol 2017;24:S165.
    1. Davis AM, Wright JG, Williams JI, et al. . Development of a measure of physical function for patients with bone and soft tissue sarcoma. Qual Life Res 1996;5:508–16. 10.1007/BF00540024
    1. Martins A, Bennister L, Fern LA, et al. . Development of a patient-reported experience questionnaire for patients with sarcoma: the sarcoma assessment measure (SAM). Qual Life Res 2020.
    1. Moher D, Liberati A, Tetzlaff J, et al. . Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009;6:e1000097 10.1371/journal.pmed.1000097
    1. Sodergren SC, Husson O, Rohde GE, et al. . Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer. Eur J Cancer Care 2018;27:e12980 10.1111/ecc.12980
    1. Biau DJ, Davis A, Vastel L, et al. . Function, disability, and health-related quality of life after allograft-prosthesis composite reconstructions of the proximal femur. J Surg Oncol 2008;97:210–5. 10.1002/jso.20936
    1. Bekkering WP, Vliet Vlieland TPM, Koopman HM, et al. . Quality of life in young patients after bone tumor surgery around the knee joint and comparison with healthy controls. Pediatr Blood Cancer 2010;54:738–45. 10.1002/pbc.22439
    1. Davidge K, Bell R, Ferguson P, et al. . Patient expectations for surgical outcome in extremity soft tissue sarcoma. J Surg Oncol 2009;100:375–81. 10.1002/jso.21301
    1. Davidge KM, Wunder J, Tomlinson G, et al. . Function and health status outcomes following soft tissue reconstruction for limb preservation in extremity soft tissue sarcoma. Ann Surg Oncol 2010;17:1052–62. 10.1245/s10434-010-0915-5
    1. Davidson D, Barr RD, Riad S, et al. . Health-Related quality of life following treatment for extremity soft tissue sarcoma. J Surg Oncol 2016;114:821–7. 10.1002/jso.24424
    1. Davis AM, O’Sullivan B, Bell RS, et al. . Function and health status outcomes in a randomized trial comparing preoperative and postoperative radiotherapy in extremity soft tissue sarcoma. JCO 2002;20:4472–7. 10.1200/JCO.2002.03.084
    1. Davis AM, Sennik S, Griffin AM, et al. . Predictors of functional outcomes following limb salvage surgery for lower-extremity soft tissue sarcoma. J Surg Oncol 2000;73:206–11. 10.1002/(SICI)1096-9098(200004)73:4<206::AID-JSO4>;2-5
    1. Fischer S, Soimaru S, Hirsch T, et al. . Local tendon transfer for knee extensor mechanism reconstruction after soft tissue sarcoma resection. J Plast Reconstr Aesthet Surg 2015;68:729–35. 10.1016/j.bjps.2015.01.002
    1. Fuchs B, Davis AM, Wunder JS, et al. . Sciatic nerve resection in the thigh: a functional evaluation. Clin Orthop Relat Res 2001;382:34–41.
    1. Heyberger C, Auberger G, Babinet A, et al. . Patients with revision modern Megaprostheses of the distal femur have improved disease-specific and health-related outcomes compared to those with primary replacements. J Knee Surg 2018;31:822–6. 10.1055/s-0037-1615298
    1. Jones KB, Ferguson PC, Deheshi B, et al. . Complete femoral nerve resection with soft tissue sarcoma: functional outcomes. Ann Surg Oncol 2010;17:401–6. 10.1245/s10434-009-0745-5
    1. MacArthur IR, McInnes CW, Dalke KR, et al. . Patient reported outcomes following lower extremity soft tissue sarcoma resection with microsurgical preservation of ambulation. J Reconstr Microsurg 2018;18:18.
    1. Malo M, Davis AM, Wunder J, et al. . Functional evaluation in distal femoral endoprosthetic replacement for bone sarcoma. Clin Orthop Relat Res 2001;389:173–80. 10.1097/00003086-200108000-00024
    1. O'Sullivan B, Davis AM, Turcotte R, et al. . Preoperative versus postoperative radiotherapy in soft-tissue sarcoma of the limbs: a randomised trial. The Lancet 2002;359:2235–41. 10.1016/S0140-6736(02)09292-9
    1. Rivard JD, Puloski SS, Temple WJ, et al. . Quality of life, functional outcomes, and wound complications in patients with soft tissue sarcomas treated with preoperative chemoradiation: a prospective study. Ann Surg Oncol 2015;22:2869–75. 10.1245/s10434-015-4490-7
    1. Saebye C, Fugloe HM, Nymark T, et al. . Factors associated with reduced functional outcome and quality of life in patients having limb-sparing surgery for soft tissue sarcomas – a national multicenter study of 128 patients. Acta Oncol 2017;56:239–44. 10.1080/0284186X.2016.1268267
    1. Schreiber D, Bell RS, Wunder JS, et al. . Evaluating function and health related quality of life in patients treated for extremity soft tissue sarcoma. Qual Life Res 2006;15:1439–46. 10.1007/s11136-006-0001-4
    1. Tanaka A, Yoshimura Y, Aoki K, et al. . Knee extension strength and post-operative functional prediction in quadriceps resection for soft-tissue sarcoma of the thigh. Bone Joint Res 2016;5:232–8. 10.1302/2046-3758.56.2000631
    1. Tanaka A, Yoshimura Y, Aoki K, et al. . Prediction of muscle strength and postoperative function after knee flexor muscle resection for soft tissue sarcoma of the lower limbs. Orthop Traumatol Surg Res 2017;103:1081–5. 10.1016/j.otsr.2017.07.005
    1. Tang MH, Castle DJ, Choong PFM. Identifying the prevalence, trajectory, and determinants of psychological distress in extremity sarcoma. Sarcoma 2015;2015:1–13. 10.1155/2015/745163
    1. Thijssens KMJ, Hoekstra-Weebers JEHM, van Ginkel RJ, et al. . Quality of life after hyperthermic isolated limb perfusion for locally advanced extremity soft tissue sarcoma. Ann Surg Oncol 2006;13:864–71. 10.1245/ASO.2006.05.023
    1. Bressoud A, Real del Sarte O, Stiefel S, et al. . Impact of family structure on long-term survivors of osteosarcoma. Support Care Cancer 2007;15:525–31. 10.1007/s00520-006-0196-5
    1. Peiper M, Matthaei H, Bölke E, et al. . Compartmental resection for subfascial extremity soft tissue sarcoma and quality of life in long-term survivors. Wien Klin Wochenschr 2011;123:488–95. 10.1007/s00508-011-1592-5
    1. Refaat Y, Gunnoe J, Hornicek FJ, et al. . Comparison of quality of life after amputation or limb salvage. Clin Orthop Relat Res 2002;397:298–305. 10.1097/00003086-200204000-00034
    1. Wilke B, Cooper A, Scarborough M, et al. . An evaluation of PROMIS health domains in sarcoma patients compared to the United States population. Sarcoma 2019;2019:1–5. 10.1155/2019/9725976
    1. Wilke BK, Cooper AR, Aratani AK, et al. . Evaluation of planned versus unplanned soft-tissue sarcoma resection using PROMIS measures. Sarcoma 2019;2019:1–8. 10.1155/2019/1342615
    1. Townley WA, Mah E, O'Neill AC, et al. . Reconstruction of sarcoma defects following pre-operative radiation: free tissue transfer is safe and reliable. J Plast Reconstr Aesthet Surg 2013;66:1575–9. 10.1016/j.bjps.2013.06.029
    1. Parsons JA, Eakin JM, Bell RS, et al. . “So, are you back to work yet?” Re-conceptualizing ‘work’ and ‘return to work’ in the context of primary bone cancer. Soc Sci Med 2008;67:1826–36. 10.1016/j.socscimed.2008.09.011
    1. Wilke B, Cooper A, Scarborough M, et al. . A comparison of limb salvage versus amputation for nonmetastatic sarcomas using patient-reported outcomes measurement information system outcomes. J Am Acad Orthop Surg 2019;27:e381–9. 10.5435/JAAOS-D-17-00758
    1. Cassidy RJ, Indelicato DJ, Gibbs CP, et al. . Function preservation after conservative resection and radiotherapy for soft-tissue sarcoma of the distal extremity: utility and application of the Toronto extremity salvage score (Tess). Am J Clin Oncol: Cancer Clin Trials 2016;39:600–3.
    1. Heaver C, Isaacson A, Gregory JJ, et al. . Patient factors affecting the Toronto extremity salvage score following limb salvage surgery for bone and soft tissue tumors. J Surg Oncol 2016;113:804–10. 10.1002/jso.24247
    1. Skaliczki G, Antal I, Kiss J, et al. . Functional outcome and life quality after endoprosthetic reconstruction following malignant tumours around the knee. Int Orthop 2005;29:174–8. 10.1007/s00264-005-0655-5
    1. Tunn PU, Pomraenke D, Goerling U, et al. . Functional outcome after endoprosthetic limb-salvage therapy of primary bone tumours—a comparative analysis using the MSTS score, the Tess and the RNL index. Int Orthop 2008;32:619–25. 10.1007/s00264-007-0388-8
    1. Gerrand CH, Wunder JS, Kandel RA, et al. . The influence of anatomic location on functional outcome in lower-extremity soft-tissue sarcoma. Ann Surg Oncol 2004;11:476–82. 10.1245/ASO.2004.07.016
    1. Bekkering WP, Vliet Vlieland TPM, Koopman HM, et al. . A prospective study on quality of life and functional outcome in children and adolescents after malignant bone tumor surgery. Pediatr Blood Cancer 2012;58:978–85. 10.1002/pbc.23328
    1. Kiiski J, Kuokkanen HO, Kääriäinen M, et al. . Clinical results and quality of life after reconstruction following sacrectomy for primary bone malignancy. J Plast Reconstr Aesthet Surg 2018;71:1730–9. 10.1016/j.bjps.2018.08.008
    1. Song PH, Beyhaghi H, Sommer J, et al. . Symptom burden and life challenges reported by adult chordoma patients and their caregivers. Qual Life Res 2017;26:2237–44. 10.1007/s11136-017-1544-2
    1. Phukan R, Herzog T, Boland PJ, et al. . How does the level of sacral resection for primary malignant bone tumors affect physical and mental health, pain, mobility, incontinence, and sexual function? Clin Orthop Relat Res 2016;474:687–96. 10.1007/s11999-015-4361-3
    1. Fisher CG, Keynan O, Boyd MC, et al. . The surgical management of primary tumors of the spine: initial results of an ongoing prospective cohort study. Spine 2005;30:1899–908.
    1. Schwab JH, Janssen SJ, Paulino Pereira NR, et al. . Quality of life after resection of a chordoma of the mobile spine. Bone Joint J 2017;99:979–86. 10.1302/0301-620X.99B7.BJJ-2016-1126.R1
    1. Aljassir F, Beadel GP, Turcotte RE, et al. . Outcome after pelvic sarcoma resection reconstructed with saddle prosthesis. Clin Orthop Relat Res 2005;438:36–41. 10.1097/00003086-200509000-00009
    1. Griesser MJ, Gillette B, Crist M, et al. . Internal and external hemipelvectomy or flail hip in patients with sarcomas: quality-of-life and functional outcomes. Am J Phys Med Rehab 2011;91:24–32.
    1. Wafa H, Grimer RJ, Jeys L, et al. . The use of extracorporeally irradiated autografts in pelvic reconstruction following tumour resection. Bone Joint J 2014;96-b:1404–10. 10.1302/0301-620X.96B10.33470
    1. Beck LA, Einertson MJ, Winemiller MH, et al. . Functional outcomes and quality of life after tumor-related hemipelvectomy. Phys Ther 2008;88:916–27. 10.2522/ptj.20070184
    1. Benedetti MG, Erfe Delayon S, Colangeli M, et al. . Rehabilitation needs in oncological patients: the On-rehab project results on patients operated for musculoskeletal tumors. Eur J Phys Rehabil Med 2017;53:81–90.
    1. van der Geest ICM, Servaes P, Schreuder HWB, et al. . Chondrosarcoma of bone: functional outcome and quality of life. J Surg Oncol 2002;81:70–4. 10.1002/jso.10144
    1. Fauske L, Bruland OS, Grov EK, et al. . Cured of primary bone cancer, but at what cost: a qualitative study of functional impairment and lost opportunities. Sarcoma 2015;2015:1–10. 10.1155/2015/484196
    1. Fauske L, Lorem G, Grov EK, et al. . Changes in the body image of bone sarcoma survivors following surgical treatment-A qualitative study. J Surg Oncol 2016;113:229–34. 10.1002/jso.24138
    1. Kain J, Carlson A, Kahler J, et al. . Lessons and advice from our patients: a focus group of sarcoma survivors. Iowa Orthop J 2017;37:139–46.
    1. Diaz RJ, Maggacis N, Zhang S, et al. . Determinants of quality of life in patients with skull base chordoma. J Neurosurg 2015;120:528–37. 10.3171/2013.9.JNS13671
    1. Srivastava A, Vischioni B, Fiore MR, et al. . Quality of life in patients with chordomas/chondrosarcomas during treatment with proton beam therapy. J Radiat Res 2013;54:i43–8. 10.1093/jrr/rrt057
    1. Utyuzh AS, Yumashev AV, Lang HW, et al. . Comprehensive treatment and rehabilitation of patients with osteosarcoma of the mandible. Implant Dent 2018;27:332–41. 10.1097/ID.0000000000000756
    1. Callegaro D, Miceli R, Brunelli C, et al. . Long-Term morbidity after multivisceral resection for retroperitoneal sarcoma. Br J Surg 2015;102:1079–87. 10.1002/bjs.9829
    1. Wong P, Kassam Z, Springer AN, et al. . Long-Term quality of life of retroperitoneal sarcoma patients treated with pre-operative radiotherapy and surgery. Cureus 2017;9:16 10.7759/cureus.1764
    1. Paredes T, Pereira M, Moreira H, et al. . Quality of life of sarcoma patients from diagnosis to treatments: predictors and longitudinal trajectories. Eur J Oncol Nurs 2011;15:492–9. 10.1016/j.ejon.2011.01.001
    1. Henderson FC, McCool K, Seigle J, et al. . Treatment of chordomas with CyberKnife: Georgetown University experience and treatment recommendations. Neurosurgery 2009;64:A44–53.
    1. Sachsenmaier SM, Ipach I, Kluba T. Quality of life, physical and mental status and contentment of patients with localized soft tissue or bone sarcoma: a questionnaire analysis. Orthop Rev 2015;7:46–50. 10.4081/or.2015.5920
    1. Servaes P, Verhagen S, Schreuder HWB, et al. . Fatigue after treatment for malignant and benign bone and soft tissue tumors. J Pain Symptom Manage 2003;26:1113–22. 10.1016/j.jpainsymman.2003.03.001
    1. Paredes T, Canavarro MC, Simões MR. Anxiety and depression in sarcoma patients: emotional adjustment and its determinants in the different phases of disease. Eur J Oncol Nurs 2011;15:73–9. 10.1016/j.ejon.2010.06.004
    1. Paredes T, Pereira M, Simoes MR, et al. . A longitudinal study on emotional adjustment of sarcoma patients: the determinant role of demographic, clinical and coping variables. Eur J Cancer Care 2012;21:41–51. 10.1111/j.1365-2354.2011.01269.x
    1. Coens C, van der Graaf WT, Blay JY, et al. . Health-Related quality-of-life results from PALETTE: a randomized, double-blind, phase 3 trial of pazopanib versus placebo in patients with soft tissue sarcoma whose disease has progressed during or after prior chemotherapy-a European organization for research and treatment of cancer soft tissue and bone sarcoma group global network study (EORTC 62072). Cancer 2015;121:2933–41.
    1. van der Graaf WTA, Blay J-Y, Chawla SP, et al. . Pazopanib for metastatic soft-tissue sarcoma (PALETTE): a randomised, double-blind, placebo-controlled phase 3 trial. The Lancet 2012;379:1879–86. 10.1016/S0140-6736(12)60651-5
    1. Schöffski P, Chawla S, Maki RG, et al. . Eribulin versus dacarbazine in previously treated patients with advanced liposarcoma or leiomyosarcoma: a randomised, open-label, multicentre, phase 3 trial. The Lancet 2016;387:1629–37. 10.1016/S0140-6736(15)01283-0
    1. Tap WD, Papai Z, Van Tine BA, et al. . Doxorubicin plus evofosfamide versus doxorubicin alone in locally advanced, unresectable or metastatic soft-tissue sarcoma (th CR-406/SARC021): an international, multicentre, open-label, randomised phase 3 trial. Lancet Oncol 2017;18:1089–103. 10.1016/S1470-2045(17)30381-9
    1. Seddon B, Strauss SJ, Whelan J, et al. . Gemcitabine and docetaxel versus doxorubicin as first-line treatment in previously untreated advanced unresectable or metastatic soft-tissue sarcomas (GeDDiS): a randomised controlled phase 3 trial. Lancet Oncol 2017;18:1397–410. 10.1016/S1470-2045(17)30622-8
    1. Reichardt P, Leahy M, Garcia Del Muro X, et al. . Quality of life and utility in patients with metastatic soft tissue and bone sarcoma: the sarcoma treatment and burden of illness in North America and Europe (sabine) study. Sarcoma 2012;2012:1–11. 10.1155/2012/740279
    1. Mo Z, Zhang T, Zhang Y, et al. . Feasibility and clinical value of CT-guided 125I brachytherapy for metastatic soft tissue sarcoma after first-line chemotherapy failure. Eur Radiol 2018;28:1194–203. 10.1007/s00330-017-5036-0
    1. Gough N, Koffman J, Ross JR, et al. . Symptom burden in advanced soft-tissue sarcoma. J Pain Symptom Manage 2017;53:588–97. 10.1016/j.jpainsymman.2016.10.357
    1. Hudgens S, Forsythe A, Kontoudis I, et al. . Evaluation of quality of life at progression in patients with soft tissue sarcoma. Sarcoma 2017;2017:1–8. 10.1155/2017/2372135
    1. Skalicky AM, Ghate SR, Perez JR, et al. . Results of a qualitative study to develop a patient reported outcome measure for patients with 4 subtypes of soft tissue sarcoma. Sarcoma 2017;2017:1–11. 10.1155/2017/6868030
    1. Buchner M, Bernd L, Zahlten-Hinguranage A, et al. . Primary malignant tumours of bone and soft tissue in the elderly. Eur J Surg Oncol 2004;30:877–83. 10.1016/j.ejso.2004.06.013
    1. Ostacoli L, Saini A, Zuffranieri M, et al. . Quality of life, anxiety and depression in soft tissue sarcomas as compared to more common tumours: an observational study. Appl Res Qual Life 2014;9:123–31. 10.1007/s11482-013-9213-2
    1. Farooqui M, Hassali MA, Knight A, et al. . Cross sectional assessment of health related quality of life (HRQoL) among patients with cancer in Malaysia. Asian Pac J Cancer Prev 2013;14:3017–21. 10.7314/APJCP.2013.14.5.3017
    1. Naik H, Howell D, Su S, et al. . EQ-5D health utility scores: data from a comprehensive Canadian cancer centre. Patient 2017;10:105–15. 10.1007/s40271-016-0190-z
    1. Leuteritz K, Friedrich M, Sender A, et al. . Life satisfaction in young adults with cancer and the role of sociodemographic, medical, and psychosocial factors: results of a longitudinal study. Cancer 2018;124:4374–82. 10.1002/cncr.31659
    1. Granda-Cameron C, Hanlon AL, Lynch MP, et al. . Experience of newly diagnosed patients with sarcoma receiving chemotherapy. Oncol Nurs Forum 2011;38:160–9. 10.1188/11.ONF.160-169
    1. Kuo PY, Yen JTC, Parker GM, et al. . The prevalence of pain in patients attending sarcoma outpatient clinics. Sarcoma 2011;2011:1–6. 10.1155/2011/813483
    1. Rustøen T, Fosså SD, Skarstein J, et al. . The impact of demographic and disease-specific variables on pain in cancer patients. J Pain Symptom Manage 2003;26:696–704. 10.1016/S0885-3924(03)00239-2
    1. Riad S, Biau D, Holt GE, et al. . The clinical and functional outcome for patients with radiation-induced soft tissue sarcoma. Cancer 2012;118:2682–92. 10.1002/cncr.26543
    1. Smith AW, Bellizzi KM, Keegan THM, et al. . Health-Related quality of life of adolescent and young adult patients with cancer in the United States: the adolescent and young adult health outcomes and patient experience study. J Clin Oncol 2013;31:2136–45. 10.1200/JCO.2012.47.3173
    1. Stish BJ, Ahmed SK, Rose PS, et al. . Patient-Reported functional and quality of life outcomes in a large cohort of long-term survivors of Ewing sarcoma. Pediatr Blood Cancer 2015;62:2189–96. 10.1002/pbc.25710
    1. Admiraal JM, Reyners AKL, Hoekstra-Weebers JEHM. Do cancer and treatment type affect distress? Psychooncology 2013;22:1766–73. 10.1002/pon.3211
    1. Lazenby M, Khatib J. Associations among patient characteristics, health-related quality of life, and spiritual well-being among Arab Muslim cancer patients. J Palliat Med 2012;15:1321–4. 10.1089/jpm.2012.0208
    1. Horick NK, Manful A, Lowery J, et al. . Physical and psychological health in rare cancer survivors. J Cancer Surviv 2017;11:158–65. 10.1007/s11764-016-0573-0
    1. Parsons HM, Harlan LC, Lynch CF, et al. . Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol 2012;30:2393–400. 10.1200/JCO.2011.39.6333
    1. Trautmann F, Singer S, Schmitt J. Patients with soft tissue sarcoma comprise a higher probability of comorbidities than cancer-free individuals. A secondary data analysis. Eur J Cancer Care 2017;26:1–3. 10.1111/ecc.12605
    1. Mitchell AJ, Ferguson DW, Gill J, et al. . Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol 2013;14:721–32. 10.1016/S1470-2045(13)70244-4
    1. Siracuse BL, Gorgy G, Ruskin J, et al. . What is the Incidence of Suicide in Patients with Bone and Soft Tissue Cancer? : Suicide and Sarcoma. Clin Orthop Relat Res 2017;475:1439–45. 10.1007/s11999-016-5171-y
    1. Aksnes LH, Bauer HCF, Jebsen NL, et al. . Limb-Sparing surgery preserves more function than amputation: a Scandinavian sarcoma group study of 118 patients. J Bone Joint Surg Br 2008;90:786–94. 10.1302/0301-620X.90B6.19805
    1. Mei J, Zhu X-Z, Wang Z-Y, et al. . Functional outcomes and quality of life in patients with osteosarcoma treated with amputation versus limb-salvage surgery: a systematic review and meta-analysis. Arch Orthop Trauma Surg 2014;134:1507–16. 10.1007/s00402-014-2086-5
    1. Gundle KR, Cizik AM, Jones RL, et al. . Quality of life measures in soft tissue sarcoma. Expert Rev Anticancer Ther 2015;15:95–100. 10.1586/14737140.2015.972947
    1. Kulis D, Piccinin C, Bottomley A, et al. . PCN45 what to choose? creating a patient-reported outcomes (pro) assessment strategy with EORTC measures and item library that can meet the needs of regulators. Value in Health 2019;22:S64 10.1016/j.jval.2019.04.169
    1. Groenvold M, Aaronson NK, Darlington A-SE, et al. . Focusing on core patient-reported outcomes in cancer clinical Trials-Letter. Clin Cancer Res 2016;22:5617. 10.1158/1078-0432.CCR-16-1529
    1. Kasper B. The EORTC QLQ-C30 summary score as a prognostic factor for survival of patients with cancer: a commentary. Oncologist 2020;25:e610–11. 10.1634/theoncologist.2019-0749
    1. Shchelkova OY, Usmanova EB. Quality of life and relation to disease in patients with bone sarcoma. Psychology in Russia: State of Art 2015;8:22–31. 10.11621/pir.2015.0103
    1. Aaronson NK, Ahmedzai S, Bergman B, 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. JNCI Journal of the National Cancer Institute 1993;85:365–76. 10.1093/jnci/85.5.365
    1. Ware JE, Sherbourne CD. The mos 36-item short-form health survey (SF-36). I. conceptual framework and item selection. Med Care 1992;30:473–83.
    1. Ware JE, Kosinski M, Dewey JE, et al. . How to score and interpret single-item health state measures: a manual for users of the SF-8 health survey. Lincoln, Rhode Island: Quality Metric Incorporated, 2001.
    1. Ware JE, Kosinski M, Turner-Bowker DM. How to score version 2 of the SF-12 health survey. Lincoln, Rhode Island: Quality Metric Inc, 2002.
    1. The EuroQol Group EuroQol - a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199–208. 10.1016/0168-8510(90)90421-9
    1. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983;67:361–70. 10.1111/j.1600-0447.1983.tb09716.x
    1. Cella DF, Tulsky DS, Gray G, et al. . The functional assessment of cancer therapy scale: development and validation of the general measure. JCO 1993;11:570–9. 10.1200/JCO.1993.11.3.570
    1. Liu H, Cella D, Gershon R, et al. . Representativeness of the patient-reported outcomes measurement information system Internet panel. J Clin Epidemiol 2010;63:1169–78. 10.1016/j.jclinepi.2009.11.021
    1. Wood-Dauphinee SL, Opzoomer MA, Williams JI, et al. . Assessment of global function: the reintegration to normal living index. Arch Phys Med Rehabil 1988;69:583–90.
    1. Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol 1985;4:219–47. 10.1037/0278-6133.4.3.219
    1. Wewers ME, Lowe NK. A critical review of visual analogue scales in the measurement of clinical phenomena. Res Nurs Health 1990;13:227–36. 10.1002/nur.4770130405
    1. Fekkes M, Kamphuis RP, Ottenkamp J, et al. . Health-Related quality of life in young adults with minor congenital heart disease. Psychol Health 2001;16:239–50. 10.1080/08870440108405502
    1. Cleeland CS, Ryan KM. Pain assessment: global use of the brief pain inventory. Ann Acad Med Singapore 1994;23:129–38.
    1. Vercoulen JHMM, Swanink CMA, Fennis JFM, et al. . Dimensional assessment of chronic fatigue syndrome. J Psychosom Res 1994;38:383–92. 10.1016/0022-3999(94)90099-X
    1. Vercoulen JHMM AM, Bleijenberg G. De checklist individual strength (cis). Gedragstherapie 1999:131–6.
    1. Varni JW, Limbers CA. The PedsQL 4.0 generic core scales young adult version: feasibility, reliability and validity in a university student population. J Health Psychol 2009;14:611–22.
    1. Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: reliability and validity of the pediatric quality of life Inventory™ version 4.0 generic core scales in healthy and patient populations. Med Care 2001;39:800–12. 10.1097/00005650-200108000-00006

Source: PubMed

3
Sottoscrivi