Measurement of Behavioral, Affective, and Somatic Responses to Pediatric Bone Marrow Transplantation: Development of the BASES Scale

Phipps, Sean; Hinds, Pamela S.; Channell, Susan

doi:10.1177/104345429401100305

Cited by 51 publications

(49 citation statements)

References 13 publications

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“…12 Within the health-related perspective, some researchers have investigated the degree of emotional distress and impairment of normal functioning specific to the treatment of patients' medical illness during the acute stage of hospitalization following the BMT. 4 However, the subtle and sometimes chronic late-effect changes in health-related quality of life of BMT survivors will need to be documented prospectively throughout the recovery period.…”

Section: Bone Marrow Transplantationmentioning

confidence: 99%

“…3) or may express difficult behavior and negative moods. 4,5 Increased levels of symptoms such as anxiety, depression, anger, and hypervigilence are generally seen as peaking during the period of hospitalization and as reflecting reasonable responses to highly aversive situationally-based stressors (eg daily aversive medical procedures, acute toxicity of chemotherapy, prolonged hospitalization and social isolation). Symptoms of psychological distress have been reported to gradually dissipate over time in many children as they recover and family life regains normality.…”

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confidence: 99%

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Quality of life and behavioral adjustment after pediatric bone marrow transplantation

Barrera

Pringle

Sumbler

et al. 2000

Bone Marrow Transplant

113

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Summary:The purpose of this study was two-fold: to describe the quality of life and behavioral adjustment of survivors of pediatric bone marrow transplantation (BMT) prior to and 6 months post-BMT; and, to identify correlates of survivors' quality of life and behavioral adjustment. Participants were 26 children and adolescents who underwent BMT, and their mothers. At pre-and 6 months post BMT, mothers completed standardized measures of their children's behavioral adjustment, quality of life, and adaptive functioning. Self-report questionnaires were completed to determine levels of maternal anxiety and depression, and family functioning. Information was also gathered about demographic variables, medical history, and symptom severity. Children's overall quality of life improved 6 months post BMT and was most strongly associated with pre-BMT levels of family cohesion. Children's behavioral adjustment remained within the normal range across time and was associated with pre-BMT levels of family cohesion and child adaptive functioning. Mothers' psychological adjustment improved over time and was associated with quality of life, but unrelated to children's behavioral adjustment. Pre-BMT levels of family cohesion and child adaptive functioning appear to be important in understanding quality of life and behavioral adjustment of pediatric BMT survivors. Bone Marrow Transplantation (2000) 26, 427-435. Keywords: quality of life; behavioral adjustment; pediatric bone marrow transplantation Bone marrow transplantation (BMT) is an aggressive medical procedure associated with high mortality and morbidity rates. For children and adolescents with some life-threatening pediatric cancers, blood diseases, and metabolic disorders, BMT may represent the best or the only viable treatment option after disease relapse and failure of more conventional treatments. Although the medical efficacy of BMT has been established for certain populations, research on the quality of life and psychosocial effects of this procedure lags behind. Many children undergoing BMT have already endured years of aggressive treatment for a lifethreatening illness. These children and their families face a future that may vary from a cure and normality to chronic graft-versus-host disease, relapse, and/or even death.1 For children and families over-burdened with a wide range of medical, socio-emotional, and financial stresses related to the illness, BMT may represent a severe additional stressor with profound disruption for the entire family. Thus, BMT places each family member at risk for psychological maladjustment and dramatic decrease in quality of life. The purpose of this study was two-fold: to describe the quality of life and behavioral adjustment of survivors of pediatric BMT prior to and 6 months post BMT; and, to identify correlates of quality of life and behavioral adjustment.The BMT procedure and its immediate and late medical effects inevitably have a significant impact on the psychological well-being and quality of life of the child and family. Studie...

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Section: Bone Marrow Transplantationmentioning

confidence: 99%

mentioning

confidence: 99%

Quality of life and behavioral adjustment after pediatric bone marrow transplantation

Barrera

Pringle

Sumbler

et al. 2000

Bone Marrow Transplant

113

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“…11 The SCT may place these children at additional risk for poor HRQOL. Children's HRQOL has been reported to be generally poor following the SCT but to improve by 4-6 months post-SCT; 3,4,12,13 and even 12 months post-SCT. 1,3 However, lower physical, emotional and social scores, higher bodily pain, and lower general health and self-esteem scores have been reported in SCT survivors than healthy norms.…”

Section: Introductionmentioning

confidence: 99%

Longitudinal health-related quality of life outcomes and related factors after pediatric SCT

Barrera

Atenafu

Hancock

2009

Bone Marrow Transplant

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Our purpose was to investigate longitudinally healthrelated quality of life (HRQOL) outcomes and related factors up to 2 years post-pediatric SCT. A total of 99 mothers of patients, aged 1.5-17 years, completed two standardized HRQOL questionnaires, generic and disease specific (DS), about the child, and reported on their own symptoms of depression and family function pre-SCT, 12 and 24 months post-SCT. Clinical (diagnosis, radiation), child (age) and family (maternal depression) information was also obtained. Significant improvement in physical and psychosocial HRQOL from pre-SCT to 1 or 2 years post-SCT was reported. Survivors of ALL were reported to have poorer physical and psychosocial HRQOL than survivors of solid tumors on the DS measure. Maternal depression was negatively associated with physical and psychosocial HRQOL. Maternal education (higher) at pre-SCT predicted improvements in physical domains 2 years post-SCT; mother's age (older) and child's age (younger) also predicted improvements of physical and emotional HRQOL. We conclude that survivors of pediatric SCT improved physical and psychosocial HRQOL by 1 and 2 years post-SCT. Older survivors whose mothers are younger and distressed, with lower education at SCT have compromised HRQOL compared to other survivors. This study has important implications for the care of SCT survivors and their families.

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“…A citation review of the reference lists from these articles and other articles found by the authors added one additional paper [46]. In addition, one author we emailed provided an additional citation [47] resulting in a total of 28 articles that discussed the development and psychometric evaluation of 16 disease-specific QOL instruments.…”

Section: Resultsmentioning

confidence: 99%

Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures

Klassen

Strohm

Maurice‐Stam

et al. 2009

Support Care Cancer

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Measurement of Behavioral, Affective, and Somatic Responses to Pediatric Bone Marrow Transplantation: Development of the BASES Scale

Cited by 51 publications

References 13 publications

Quality of life and behavioral adjustment after pediatric bone marrow transplantation

Quality of life and behavioral adjustment after pediatric bone marrow transplantation

Longitudinal health-related quality of life outcomes and related factors after pediatric SCT

Quality of life questionnaires for children with cancer and childhood cancer survivors: a review of the development of available measures

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