Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group.

Ilse Van Eck,Øyvind S Bruland,Ioanna Nixon,Marco Fiore,Milou J P Reuvers,Winan J Van Houdt,Johannes J Bonenkamp,Bernd Kasper,Samer Salah,Leopold Hentschel,Dide Den Hollander,Lena Fauske,Olga Husson,Martin Eichler,Monica Pinto,Anastasia Constantinidou,Emma Lidington,Rick L Haas ,Susanne Schnittger ,Winette T.a Van Der Graaf ,Ingrid M.e Desar

doi:10.3390/jcm10225334

Abstract

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm height were specific physical issues for breast sarcoma patients, whereas respiratory problems were only mentioned by thoracic sarcoma patients. Body image issues, changes in mood, fear of recurrence, and living with uncertainty were important mental health issues for both subgroups. Social issues in both groups included challenges in work and relationships, financial difficulties, loss of independence, and limitations in social activities. The identified physical, mental, and social health challenges can significantly impact thoracic and breast sarcoma patients’ HRQoL. Results of this qualitative study will guide personalised supportive care for breast and thoracic sarcoma patients and help in determining the best possible HRQoL measurement strategy for sarcoma patients with different primary sarcoma locations.

Highlights

Sarcomas represent a rare group of cancers that account for only 1% of all adult malignancies [1]
Cancer generic issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to surgery, chemotherapy, and radiotherapy
We found that the type and location of pain were different between the different sarcoma locations and treatments; i.e., pain in muscles or joints after chemotherapy, phantom pain in extremity sarcoma patients who underwent an amputation, or pain in the affected breast after breast surgery [4], indicating that it is important to assess if the patient has pain, but it might be important to assess the location, type, and frequency of the pain in order to accomplish pain relief and optimise health-related quality of life (HRQoL)

Summary

Introduction

Sarcomas represent a rare group of cancers that account for only 1% of all adult malignancies [1]. They are very heterogeneous, covering more than 100 histological subtypes, which can develop anywhere in the body [1,2]. The treatment of sarcomas is often accompanied by significant short- and long-term side effects that negatively affect patients functioning in daily life. Focusing on patient-reported outcomes (PROs), such as healthrelated quality of life (HRQoL), is important. In the study of Eichler et al [3], the heterogeneity of sarcomas with regard to type and location was reflected in HRQoL outcomes. In our previous work, in which we used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) as a measure of HRQoL in combination with unique treatment-specific HRQoL questions for each sarcoma location [4], we found different patterns of HRQoL per sarcoma location, and additional treatment-specific HRQoL issues which seemed unique for each tumour site

Objectives

Methods

Discussion

Conclusion