Pain, quality of life, and coping in sickle cell disease.

Fuggle, Peter; Shand, P. A. X.; Gill, Liz; Davies, Sally C.

doi:10.1136/adc.75.3.199

Cited by 141 publications

(110 citation statements)

References 7 publications

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“…Most felt their illness had affected their academic progress. Respondents attempted to overcome the disruptions but were often disappointed by the response of their teachers, a feature of educational support for those with a chronic illness (Fuggle, Shand, Gill, & Davies, 1996). Schools seemed unable to accommodate difference and offer support to young people.…”

Section: Social and Emotional Factorsmentioning

confidence: 99%

Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder

Atkin

Ahmad

2001

Social Science & Medicine

134

153

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This qualitative paper explores the strategies and resources young people use to cope with sickle cell disorder or thalassaemia major, two haemoglobin disorders with serious implications for health and survival. By focusing on coping strategies, we explore how young people attempt to take control over their lives. The respondents, largely of South Asian and African Caribbean origin, aged between 10 and 19 years, valued maintaining a 'normal' life and struggled to achieve this normalcy. Strategies were employed to minimise difference from peers but these strategies remained vulnerable. Coping occurred in a dynamic space, involving negotiation and engagement with both personal and structural factors. Threats to normalcy did not always reside in the condition; life transitions, changes in social relationships and racist, disablist or sexist marginalisation also threatened coping strategies. #

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Section: Social and Emotional Factorsmentioning

confidence: 99%

Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder

Atkin

Ahmad

2001

Social Science & Medicine

134

153

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“…10,11 Aside from the direct physical morbidity of these recurrent painful attacks, other significant outcomes such as quality of life, school attendance, and societal participation of patients are greatly affected. [12][13][14][15][16][17][18] Moreover, high societal costs are involved. Direct costs arise from high health care utilization, and indirect costs include absence from work associated with impaired physical ability to perform daily tasks.…”

Section: Introductionmentioning

confidence: 99%

Pharmacotherapeutical strategies in the prevention of acute, vaso-occlusive pain in sickle cell disease: a systematic review

et al. 2017

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Sickle-cell disease (SCD) is characterized by frequent and painful vaso-occlusive crises (VOCs).Various treatments have been evaluated over the years. However, a clear overview is lacking.The objective of this study was to systematically review all pharmacotherapeutical strategies in the prevention of VOCs beyond hydroxyurea. We performed a systematic literature search (MEDLINE, Embase, CENTRAL). Eligible studies were controlled clinical trials evaluating pharmacotherapeutical interventions targeting the reduction of VOCs in patients with SCD.Primary outcomes were the number or duration of SCD-related pain days, VOCs, or hospital admissions for VOCs. Secondary outcomes included time to first VOC or hospital admission for a VOC. A standardized data extraction sheet was used. The methodological quality of studies was assessed using Cochrane's risk-of-bias tool. A total of 36 studies were included in this review, covering 26 different prophylactic interventions. The most promising interventions for reducing the frequency of either VOCs or hospitalizations were the oral antioxidants L-glutamine and v-3 fatty acids and the IV antiadhesive agent crizanlizumab. Twenty-three studies did not show any beneficial effect of the intervention under investigation, and 6 studies were either too small or methodologically inadequate to draw conclusions. Because of the heterogeneity of interventions, no meta-analysis was performed. In conclusion, this review identified 3 promising pharmacotherapeutical strategies in the prevention of VOCs in SCD. Importantly, this study highlights the discrepancy between the significant burden of SCD worldwide and the low number of adequate trials performed. This review was

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“…Concurring with the literature, painful crises represented the most frequent adverse manifestation of the disease in the present study [7, 29]. The widely reported high number of painful crises that frequently restrict daily activities of many children was confirmed.…”

Section: Discussionmentioning

confidence: 56%

“…Frequency and intensity of pain are probably associated with early mortality [6]. Infections, hemolysis, dysfunction of multiple organs, and disturbances in physical and emotional development complete the clinical picture [7,8,9]. …”

Section: Introductionmentioning

confidence: 99%

Inefficacy of Piracetam in the Prevention of Painful Crises in Children and Adolescents with Sickle Cell Disease

Alvim

Viana²,

Pires³

et al. 2005

Acta Haematol

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Analgesia and hydration remain the only safe treatment for painful crises of sickle cell disease; hydroxyurea is effective, but the toxicity is still a problem. Piracetam is a nootropic drug that has reportedly been effective and non-toxic in sickle cell patients, but most studies were not placebo-controlled and included a small number of patients. The present study evaluated the drug in a double-blind crossed placebo-controlled clinical trial in 73 children and adolescents suffering from moderate to severe painful crises for 13 months. Information regarding frequency and severity of pain was acquired through monthly clinical evaluation, visits and house calls, and 4,300 weekly questionnaires filled out by the patients in their domiciles. A monthly pain score was calculated for each patient. Pain was the most frequent adverse manifestation of the disease stressing its significant bio-psycho-social impact. Although nearly all patients and relatives reported a better clinical course throughout the whole study, the drug was ineffective in the prevention of painful crises. This placebo effect may be ascribed to an unplanned and unsystematic ‘cognitive-behavioural’ management of the children. The pain score in the second semester of the study – both in the experimental and in the control groups – was significantly smaller than that in the first semester. In conclusion, piracetam was found to be ineffective in the prevention of painful crises; a powerful placebo effect due to adequate patient care was demonstrated.

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Pain, quality of life, and coping in sickle cell disease.

Cited by 141 publications

References 7 publications

Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder

Living a ‘normal’ life: young people coping with thalassaemia major or sickle cell disorder

Pharmacotherapeutical strategies in the prevention of acute, vaso-occlusive pain in sickle cell disease: a systematic review

Inefficacy of Piracetam in the Prevention of Painful Crises in Children and Adolescents with Sickle Cell Disease

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