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- Mansson, A., et al.
(author)
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Neutral third party versus treating institution for evaluating quality of life after radical cystectomy
- 2004
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In: Eur Urol. - 0302-2838. ; 46:2, s. 195-9
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Journal article (peer-reviewed)abstract
- OBJECTIVE: To evaluate the possible impact of a neutral third party on the patients' responses to health-related quality of life (HRQL) instruments. METHODS: 119 patients operated at the Department of Urology in Lund with radical cystectomy and continent urinary tract reconstruction (continent cutaneous diversion or orthotopic bladder substitution) for locally advanced bladder cancer were included in the study. They were randomly divided in two groups, similar with regard to gender, age, length of follow-up, and type of reconstruction. The EORTC instruments QLQ-C30 and QLQ-BLM30 were sent to the patients. One group; "Lund patients", received the instruments from the Department of Urology in Lund, while the other group; "Stockholm patients", received the instruments from a neutral third party, i.e. "The Project Health and Well-Being" at the Karolinska Institutet in Stockholm. RESULTS: Response rates were high in both groups, 59 out of 60 among Lund patients and 57 out of 59 among Stockholm patients. There were statistically significantly more bowel problems reported in the Stockholm patients than in the Lund patients (p<0.05) in the QLQ-C30 instrument. Regarding type of reconstruction, the Stockholm patients with continent cutaneous diversion scored higher for constipation than the Lund patients (p<0.05), and the Stockholm patients with bladder substitution scored lower for emotional functioning and higher for dyspnoea and economical problems than the Lund patients (p<0.05. There were no statistically significant differences between the Lund patients and the Stockholm patients in the QLQ-BLM30 instrument. CONCLUSION: Though few factors differed between the two groups, the results may indicate that different results are obtained when a study is totally administered and analyzed by a neutral third party as compared with the surgeon or his or her institution. Larger studies are needed to further test this hypothesis.
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- Andersson, Therese M. -L., et al.
(author)
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Estimating the cure proportion of malignant melanoma, an alternative approach to assess long term survival : A population-based study
- 2014
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In: Cancer Epidemiology. - : Elsevier BV. - 1877-7821 .- 1877-783X. ; 38:1, s. 93-99
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Journal article (peer-reviewed)abstract
- Objectives: A large proportion of patients with cutaneous malignant melanoma (CMM) do not experience excess mortality due to their disease. This group of patients is referred to as the cure proportion. Few studies have examined the possibility of cure for CMM. The aim of this study was to estimate the cure proportion of patients with CMM in a Swedish population. Methods: We undertook a population-based study of 5850 CMM patients in two Swedish health care regions during 1996-2005. We used flexible parametric cure models to estimate cure proportions and median survival times (MSTs) of uncured by stage, sex, age and anatomical site. Results: Disease stage at diagnosis was the most important factor for the probability of cure, with a cure proportion of approximately 1.0 for stage IA. While the probability of cure decreased with older age, the influence of age was smaller on the MST of uncured. Differences in prognosis between males and females were mainly attributed to differences in cure as opposed to differences in MST of uncured. Conclusions: This population-based study showed approximately 100% cure among stage IA disease. Almost 50% of patients had stage IA disease and the high cure proportion for this large patient group is reassuring.
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- Bray, Lucy, et al.
(author)
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Developing rights-based standards for children having tests, treatments, examinations and interventions : using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus
- 2023
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In: European Journal of Pediatrics. - : Springer Nature. - 0340-6199 .- 1432-1076.
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Journal article (peer-reviewed)abstract
- Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020–2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child.What is Known:• Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care.• Professionals report uncertainty and tensions in applying evidence-based practice to children’s procedural care. What is New:• This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives.• The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.
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