Eva Doukkali - Academia.edu (original) (raw)
Papers by Eva Doukkali
Quality of Life Research
Patients with lung cancer experience considerable distress. Therefore, accurate methods for asses... more Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of ...
Quality of Life Research, 2007
Patients with lung cancer experience considerable distress. Therefore, accurate methods for asses... more Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of comparable EORTC-QLQ-C30+LC13 items. These results indicate that items included in standardized measures are not always adequate to assess patients' concerns, priorities and changes over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical palliative setting for providing detailed information about the individual's problems and prioritizations.
Pediatric Blood & Cancer, 2010
Due to advances in medicine there has been a considerable improvement in childhood cancer surviva... more Due to advances in medicine there has been a considerable improvement in childhood cancer survival rates. Today three out of four children who have been diagnosed with cancer are cured [1]. In the growing population of long-term survivors of childhood cancer treatment related health problems have been widely acknowledged [2-5]. Furthermore, the literature reveals negative impacts on close relationships and life goals such as education and work as well as worries about illness recurrence and uncertainty about the future [6,7]. However, other studies of survivors report the same or better quality of life [8,9] and psychological functioning [6,10] as that found in comparison groups. Nevertheless, the importance of following up healthcare needs after childhood cancer is highlighted owing to physical problems that may have negative consequences for the individual [11]. Healthcare providers' inability to meet such needs was reported in a Swedish study, where 30% of the long-term survivors of childhood cancer were dissatisfied with the follow-up visits they had been offered [12]. There is as yet no commonly accepted definition of what constitutes quality of life nor is there a 'gold standard' measure. Assessing quality of life generally includes the individual's appraisal of different dimensions, such as physical, emotional and social functioning [13]. Measures of quality of life are often health related and standardized and are designed to assess the impact of illness and treatment on a person's life [14]. An alternative approach to assessing quality of life is to use an individualized measure that enables identification and evaluation of aspects considered important in life [15]. Thus, using such an approach it may be possible to detect the individual's perspective on factors that influences quality of life factors not necessarily detected with standardized measures. It is clear that many survivors of childhood cancer experience ongoing physical health problems. However, there is less knowledge about how young adult survivors perceive their current lives and about what influence health status has on their quality of life. Accordingly, the present objective was to describe quality of life in relation to self-reported health status and socio-demographic characteristics among long-term survivors of childhood cancer as compared to that among a sample from the general population.
European Journal of Cancer, 2001
Cancer, 2005
BACKGROUND. The patient perspective on distress associated with lung carcinoma is important, yet ... more BACKGROUND. The patient perspective on distress associated with lung carcinoma is important, yet understudied. Previous research on symptom experience generally had not differentiated the dimension symptom intensity/frequency from which symptoms are associated with most distress. The objective of the current study was to determine whether patterns of symptom intensity were similar to patterns of symptom distress, whether patterns were consistent at different time points, whether patterns varied by subgroups, and whether high symptom intensity was equivalent to distress.
Quality of Life Research
Patients with lung cancer experience considerable distress. Therefore, accurate methods for asses... more Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of ...
Quality of Life Research, 2007
Patients with lung cancer experience considerable distress. Therefore, accurate methods for asses... more Patients with lung cancer experience considerable distress. Therefore, accurate methods for assessing distress and quality of life over time may play a key role for managing and evaluating palliative care. Alternatives to commonly used standardized questionnaires are individual measures. This study prospectively and retrospectively explored the concerns that 46 patients with inoperable lung cancer spontaneously reported as causing most distress close to diagnosis and 6 months later. Changes in content individually generated through a structured inductive freelisting were compared with EORTC-QLQ-C30+LC13 ratings. The results showed that patients perceived a wide variety of concerns as most distressing and that their concerns changed over time. Between 56 and 62% of these concerns were assessed by items included in the EORTC-QLQ-C30+LC13 questionnaires. Furthermore, patients' reports of most distress from fatigue, pain and dyspnea were not always reflected in intensity ratings of comparable EORTC-QLQ-C30+LC13 items. These results indicate that items included in standardized measures are not always adequate to assess patients' concerns, priorities and changes over time. In addition to standardized questionnaires, individualized measures may be useful in the clinical palliative setting for providing detailed information about the individual's problems and prioritizations.
Pediatric Blood & Cancer, 2010
Due to advances in medicine there has been a considerable improvement in childhood cancer surviva... more Due to advances in medicine there has been a considerable improvement in childhood cancer survival rates. Today three out of four children who have been diagnosed with cancer are cured [1]. In the growing population of long-term survivors of childhood cancer treatment related health problems have been widely acknowledged [2-5]. Furthermore, the literature reveals negative impacts on close relationships and life goals such as education and work as well as worries about illness recurrence and uncertainty about the future [6,7]. However, other studies of survivors report the same or better quality of life [8,9] and psychological functioning [6,10] as that found in comparison groups. Nevertheless, the importance of following up healthcare needs after childhood cancer is highlighted owing to physical problems that may have negative consequences for the individual [11]. Healthcare providers' inability to meet such needs was reported in a Swedish study, where 30% of the long-term survivors of childhood cancer were dissatisfied with the follow-up visits they had been offered [12]. There is as yet no commonly accepted definition of what constitutes quality of life nor is there a 'gold standard' measure. Assessing quality of life generally includes the individual's appraisal of different dimensions, such as physical, emotional and social functioning [13]. Measures of quality of life are often health related and standardized and are designed to assess the impact of illness and treatment on a person's life [14]. An alternative approach to assessing quality of life is to use an individualized measure that enables identification and evaluation of aspects considered important in life [15]. Thus, using such an approach it may be possible to detect the individual's perspective on factors that influences quality of life factors not necessarily detected with standardized measures. It is clear that many survivors of childhood cancer experience ongoing physical health problems. However, there is less knowledge about how young adult survivors perceive their current lives and about what influence health status has on their quality of life. Accordingly, the present objective was to describe quality of life in relation to self-reported health status and socio-demographic characteristics among long-term survivors of childhood cancer as compared to that among a sample from the general population.
European Journal of Cancer, 2001
Cancer, 2005
BACKGROUND. The patient perspective on distress associated with lung carcinoma is important, yet ... more BACKGROUND. The patient perspective on distress associated with lung carcinoma is important, yet understudied. Previous research on symptom experience generally had not differentiated the dimension symptom intensity/frequency from which symptoms are associated with most distress. The objective of the current study was to determine whether patterns of symptom intensity were similar to patterns of symptom distress, whether patterns were consistent at different time points, whether patterns varied by subgroups, and whether high symptom intensity was equivalent to distress.