Haematopoietic stem cell transplantation survivorship and quality of life: is it a small world after all?

Abstract

HSCT has a profound and pervasive impact on the life of survivors-reducing their horizons and shrinking various parts of their worlds. While HSCT survivors can describe the ways in which their life has changed, many of their fears, anxieties, regrets and concerns are existential in nature and are ill-defined-making it exceeding unlikely that they would be adequately captured by standard psychometric measures of QoL post HSCT.

The experience of adults with sickle cell disease and their HLA‐matched adult sibling donors after allogeneic hematopoietic stem cell transplantation

“…Similar to that described by Battiwalla, Hashmi, et al () and Brice et al () in recipients with haematological malignant and non‐malignant conditions, several expressed disappointment related to the continued health problems and/or troublesome recovery. Importantly, our findings show that recipients with SCD describe their post‐HSCT life more positively than those of long‐term cancer survivors (Brice et al, ). Perhaps, this difference reflects the nature of these diseases.…”

Stress and coping strategies among allogeneic haematopoietic stem cell transplantation survivors: A qualitative study

“…Physical symptoms include GVHD symptoms, treatment side effects, fatigue, physical appearance and sexual function disorders (Brice et al, 2017;Poloméni, Lapusan, Bompoint, Rubio, & Mohty, 2016;Russell, Harcourt, Henderson, & Marks, 2011;Sherman et al, 2005).…”

“…Reported psychological symptoms include cognitive changes, fear, loneliness, loss of self-esteem and frustration (Brice et al, 2017;Phillips et al, 2013;Poloméni et al, 2016;Sherman et al, 2005;Williams, 2012;Zamanzadeh, Valizadeh, Sayadi, Taleghani, & Jeddian, 2013). Psychological issues such as uncertainty and isolation are not symptoms; however, as they affect survivors' life, it is important that they are explored further.…”

“…The procedure requires high doses of chemotherapy, and in some cases radiation, to eradicate the disease; this has a significant impact on patients' quality of life (Mosher, Redd, Rini, Burkhalter, and DuHamel, 2009). Despite the potentially curative effects of this treatment, psychosocial distress often results from regimen‐related toxicities, long periods of isolation, lengthy in‐hospital stays, a range of symptoms induced by graft‐versus‐host disease (GVHD) and long‐lasting complications(Brice et al., 2017; Cooke, Gemmill, Kravits, & Grant, 2009). However, despite these stressors, there are limited evidence‐based psychological interventions for allo‐HSCT survivors (Baliousis, Rennoldson, & Snowden, 2016).…”

Coping strategies used during treatment by patients submitted to hematopoietic stem cell transplantation

“…O afastamento imposto pela hospitalização gera sentimentos de angústia e impotência, principalmente quando os filhos são dependentes. Ademais, podem ocorrer dificuldades com o conjugue ou com a pessoa próxima devido à dupla jornada que irá desempenhar, de acompanhante e provedor do lar, levando o paciente a pensar que o seu tratamento gera uma sobrecarga e transtorno familiar (Brice et al, 2017). Ao receber o diagnóstico de cancro, o núcleo familiar passa a ser afetado e inicia-se uma vivência de incertezas e expectativas em torno do futuro.…”