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- Thörnerup, Ingrid, et al.
(author)
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Minimal residual disease assessment in childhood acute lymphoblastic leukaemia: a Swedish multi-centre study comparing real-time polymerase chain reaction and multicolour flow cytometry.
- 2011
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In: British Journal of Haematology. - : Wiley. - 0007-1048 .- 1365-2141. ; 152:6, s. 743-753
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Journal article (peer-reviewed)abstract
- Minimal residual disease (MRD) assessment is a powerful prognostic factor for determining the risk of relapse in childhood acute lymphoblastic leukaemia (ALL). In this Swedish multi-centre study of childhood ALL diagnosed between 2002 and 2006, the MRD levels were analysed in 726 follow-up samples in 228 children using real-time quantitative polymerase chain reaction (RQ-PCR) of rearranged immunoglobulin/T-cell receptor genes and multicolour flow cytometry (FCM). Using an MRD threshold of 0·1%, which was the sensitivity level reached in all analyses, the concordance between RQ-PCR and FCM MRD values at day 29 was 84%. In B-cell precursor ALL, an MRD level of ≥0·1% at day 29 predicted a higher risk of bone marrow relapse (BMR) with both methods, although FCM was a better discriminator. However, considering the higher median MRD values achieved with RQ-PCR, a higher MRD cut-off (≥0·2%) improved the predictive capacity of RQ-PCR. In T-ALL, RQ-PCR was notably superior to FCM in predicting risk of BMR. That notwithstanding, MRD levels of ≥0·1%, detected by either method at day 29, could not predict isolated extramedullary relapse. In conclusion, the concordance between RQ-PCR and FCM was high and hence both methods are valuable clinical tools for identifying childhood ALL cases with increased risk of BMR.
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| 2. |
- Öhlén, Joakim, 1958, et al.
(author)
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A Clinical Intervention Model for Communication and Information Focusing on Existential Uncertainty – A Participatory Action Research Project Informed by Qualitative Outcome Analysis
- 2011
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In: Supportive Care in Cancer. ; 19:Suppl 2
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Conference paper (peer-reviewed)abstract
- Objectives. The aim was to develop a team oriented intervention model for palliative cancer care focusing on communicating changes in goals of care. Methods. A participatory action research project was designed by means of qualitative outcome analysis. Initially, bimonthly focus groups with one palliative care team at an oncology outpatient unit were performed during one and a half year. Previous major results, from qualitative studies into patients’ knowledge seeking and experiences of communication and information in palliative cancer care, were used as facilitators for discussion and reflection on the team’s professional experiences. Collaboratively, the researchers and the team worked on developing an intervention model for communication and information. Group discussion data were analyzed concurrently. A preliminary clinical intervention model was developed and refined by means of focus groups with additional palliative care teams and patients respectively. Results. A model of communication and information in palliative cancer care aimed for clinical intervention will be presented, including main concepts, strategies and outcomes. The focus of the model is communication of changes in patients’ goals of care in relation to progress of disease as well as patients’ existential uncertainty (conceptualized as certainty–uncertainty). Conclusions. The model is found to have clinical fit, thanks of the collaborative development by clinicians and researchers. The next step is to further evaluate it clinically.
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| 4. |
- Gudmundsdottir, Eyglo, et al.
(author)
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Psychological resilience and long-term distress in Swedish and Icelandic parents' adjustment to childhood cancer
- 2011
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In: Acta Oncologica. - 0284-186X .- 1651-226X. ; 50:3, s. 373-380
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Journal article (peer-reviewed)abstract
- Aim. Studies of parental reactions to a child's cancer have traditionally been carried out within the framework of psychiatry and psychopathology. We studied the significance of individual resource factors strengthening parents' resilience to long-term cancer-related distress, a focus that has rarely been used. Participants and methods. The two-nation Nordic sample included 398 parents; 190 of whom had experienced a child's cancer, and 208 reference parents. We studied the sense of coherence (SOC) using the SOC-13 questionnaire. For assessing distress reactions we used a primarily illness-specific 11-dimensional Parental Psychosocial Distress in Cancer (PPD-C) self-report questionnaire developed for use with parents of childhood cancer patients, and the General Health Questionnaire (GHQ). Resilience was defined as absence of/less severe distress. Results. Low SOC was significantly associated with more severe distress in all dimensions of the PPD-C and GHQ. The protective effect of SOC was indicated by it being most negatively related to general psychiatric symptoms, physical and psychological stress symptoms, anxiety and depression. The influence of SOC varied with parents' gender, showing a stronger modifying influence among mothers. Mothers and fathers also differed in their utilisation of professional psychosocial support when confronted with the child's cancer. Conclusion. Parental resilience to cancer-related distress varies with identifiable strength factors. A strengths-oriented approach helps in understanding parental adjustment to childhood cancer. In order to counteract psychological vulnerability, addressing resilience instead of pathology helps to identify parents at risk and in need of professional support when faced with a child's cancer.
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| 5. |
- Molgaard-Hansen, Lene, et al.
(author)
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Treatment-related deaths in second complete remission in childhood acute myeloid leukaemia.
- 2011
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In: British journal of haematology. - : Wiley. - 1365-2141 .- 0007-1048. ; 152:5, s. 623-30
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Journal article (peer-reviewed)abstract
- The frequency and causes of treatment-related deaths (TRD) in second complete remission (CR2) in acute myeloid leukaemia (AML) were investigated in a historical, prospective cohort study of 429 children included in the Nordic Society of Paediatric Haematology and Oncology (NOPHO)-AML-88 and -93 trials. Relapse occurred in 158 children (39%). Seventeen (18%) of the 96 patients entering CR2 suffered TRD. The main causes were infection (59%) and complications from graft-versus-host disease (22%). Fourteen (82%) of 17 TRDs occurred in children undergoing haematopoietic stem cell transplantations (HSCT). Optimal supportive care after HSCT is essential, and studies on risk factors for TRD are needed.
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| 6. |
- Hovén, Emma, 1983-, et al.
(author)
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The met and unmet health care needs of adult survivors of childhood central nervous system tumors : A double-informant, population-based study
- 2011
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In: Cancer. - : Wiley. - 0008-543X .- 1097-0142. ; 117:18, s. 4294-4303
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Journal article (peer-reviewed)abstract
- BACKGROUND:The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.METHODS:In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3.RESULTS:Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory.CONCLUSIONS:Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.
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