The nature and timing of distress among post-treatment haematological cancer survivors

Abstract

Many people with haematological cancers will not meet the diagnostic criteria for a psychological disorder, but will still suffer distress during treatment and beyond. The current study aimed to explore the nature and timing of psychosocial distress experienced by haematological cancer survivors. Twenty‐three post‐treatment haematological cancer survivors participated in a semi‐structured interview. Data were analysed using thematic analysis which involved identifying, analysing and reporting themes. Four themes were identified: Apprehension about leaving the safety of the health care system comprises the struggles encountered when transitioning from patient to survivor, Uncertainty and life transitions in the post‐treatment period encompasses the changes survivors face when attempting to re‐enter their “normal” lives, Distress associated with ongoing physical problems or impairment describes issues associated with the ongoing physical sequelae, and Fear of recurrence encapsulates how the continuing threat of cancer recurrence impacted survivors. This study has found that distress is ongoing for many haematological cancer survivors in the post‐treatment period. It is imperative that distress is identified and support offered to those in need to prevent further psychosocial issues. It is especially important to consider the psychosocial needs of survivors in the post‐treatment stage who are discharged from the health system may be unsure where to seek help.

“This Graft-vs.-Host Disease Determines My Life. That's It.”—A Qualitative Analysis of the Experiences and Needs of Allogenic Hematopoietic Stem Cells Transplantation Survivors in Germany

“…Due to improvements in treatment modalities and decreasing mortality rates following HSCT the number of survivors is increasing (12)(13)(14). While many HSCT-survivors struggle with self-management and adherence to their prescribed care (15) little is known about survivors' perspective on how long-term effects of alloHSCT impact on their lives, and how healthcare providers could better help them manage their symptoms and care (16,17). For example, Laidsaar-Powell et al conducted a recent review on adult cancer survivors and found that compared to other common cancers with relatively high survival rates, such as breast or prostate cancer, there is considerably little evidence about the perceptions and experiences of survivors of hematological cancers, particularly with regard to the long-term effects of alloHSCT, such as cGvHD (18)(19)(20).…”

Cancer-Related Psychological Distress in Lymphoma Survivor: An Italian Cross-Sectional Study

“…The need to carry out this study took inspiration from the observation that in the literature, few studies have analyzed psychological distress in lymphoma survivors who were at least 5 years after the end of treatments, and frequently, data must be extrapolated from generic cancer and/or hematological survivor samples ( Linden et al, 2012 ; Korszun et al, 2014 ; ACTION Study Group, 2017 ; Oberoi et al, 2017 ; Bevilacqua et al, 2018 ; Kuba et al, 2019 ; Raphael et al, 2019 ; Götze et al, 2020 ; Joshy et al, 2020 ). It is also important to consider that studies often speak generically of psychological distress without distinguishing the components of anxiety and depression ( Korszun et al, 2014 ; Jones et al, 2015 ; Raphael et al, 2019 ; Troy et al, 2019 ; Joshy et al, 2020 ). In addition, the literature shows that lymphoma survivors often have specific characteristics (such as: <QoL, pain, depression, and anxiety) because the clinical processes and therapies they undergo produce strong adverse effects ( Vargas-Román et al, 2020 ).…”

“…Studies show that patients with lymphoma have a greater intensity of psychological distress in the treatment phase than lymphoma survivors ( Smith et al, 2009 ; Troy et al, 2019 ). However, it was also found that anxiety and depression are among the consequences experienced by cancer survivors and that their levels change with the passage of time ( Raphael et al, 2019 ; Troy et al, 2019 ). Therefore, it is important to assess psychological distress along the entire survival trajectory and offer timely responses of adequate psychological support.…”

“…The topic has been less studied, and the literature shows that studies analyzing psychological distress in lymphoma survivors who have finished treatments for at least 5 years are scarce and frequently show non-homogeneous results and do not reach statistical significance ( Gil-Fernández et al, 2003 ; Aksnes et al, 2007 ; Bøhn et al, 2019 ). Furthermore, data must be extrapolated from survivor samples that include different types of cancer ( Linden et al, 2012 ; ACTION Study Group, 2017 ; Bevilacqua et al, 2018 ; Götze et al, 2020 ; Joshy et al, 2020 ) or in hematological cancer generic samples ( Korszun et al, 2014 ; Oberoi et al, 2017 ; Kuba et al, 2019 ; Raphael et al, 2019 ). For example, Kuba et al (2019) found higher depression and anxiety symptoms in hematological cancer long-survivors than in the comparison group, whereas Oberoi et al (2017) found that the levels of anxiety and depression turn out to be different when compared with the different types of hematological cancer.…”

Процена Дистреса Онколошких Пацијената Након Завршетка Лечења

“…Квалитативно истраживање на узорку од 23 хемато-онколошка пацијента у периоду након лечења показало је да је дистрес након завршетка лечења углавном повезан са физичким проблемима и последицама болести и лечења. Слично као у нашем истраживању, у овом истраживању је добијено да је дистрес након завршетка лечења узрокован страхом од релапса болести (Raphael, Frey, & Gott, 2018). У нашем истраживању значајан број пацијената наводи бригу о новцу и рачунима, те проблеме на послу/школи, као проблеме који их од осталих наведених практичних проблема највише потресају, што указује на то да су приходи и активности током трајања онколошког лечења, а често и у периоду рехабилитације, након лечења, значајно редуковани, што отежава функционисање пацијената и представља додатни извор бриге.…”