Lena Wettergren - Academia.edu (original) (raw)
Papers by Lena Wettergren
Statement of the Purpose. Children and families at all stages of the cancer trajectory will poten... more Statement of the Purpose. Children and families at all stages of the cancer trajectory will potentially experience much suffering and long-term psychosocial-behavioral consequences. Although individual investigators have contributed to the knowledge about quality of life, coping, and psychosocial functioning in these individuals the overall impact of this work on the quality of care and quality of life has been minimal.
Quality of Life Research, 2004
In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymph... more In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymphoma (HL) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary. A better understanding of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients. The populations were long-term survivors of HL (n=121) and a
Health and Quality of Life Outcomes
BACKGROUND: Cancer is among the three leading causes of death in low income countries and the hig... more BACKGROUND: Cancer is among the three leading causes of death in low income countries and the highest increase with regard to incidence figures for cancer diseases are found in these countries. This is the first report of the health-related quality of life (HRQOL) and needs of care and support of adult Tanzanians with cancer. METHODS: A mixed-methods design was used. The study was conducted at Ocean Road Cancer Institute (ORCI) in Dar es Salaam, Tanzania. One hundred and one patients with a variety of cancer diagnoses treated and cared for at ORCI answered the Kiswahili version of the EORTC QLQ-C30 investigating HRQOL. Thirty-two of the patients participated in focus group interviews discussing needs of care and support. Data from focus group interviews were analyzed with content analysis. RESULTS: The findings show that the patients, both women and men, report a low quality of life, especially with regard to physical, role, and social function and a high level of symptoms and probl...
Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses, Jan 12, 2015
The aim was to investigate how childhood cancer survivors perceive school and whether their perce... more The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors...
Human Reproduction, 2014
study question: What do adolescent and young adult survivors of childhood cancer think about the ... more study question: What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? summary answer: The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future.
European Journal of Cancer Supplements, 2007
Nursing Programme and models developed further at a consensus meeting with professionals and the ... more Nursing Programme and models developed further at a consensus meeting with professionals and the young people. Our aim is to give a brief overview of this study and focus on the findings exclusively to encourage participants to reflect on the possibilities and challenges of service provision for adult survivors of childhood cancer. This joint presentation by a nurse and cancer survivor will enable both professional and survivor perspectives to be shared and debated.
Quality of Life Research, 2014
The sense of coherence (SOC) scale is widely used and has an extensive history in research. The p... more The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement properties of the SOC scale using the Rasch measurement model. SOC questionnaires from a sample of 623 healthy adults were analysed using Rasch analysis. Aspects analysed were rating scale functioning, item fit, unidimensionality, differential item functioning (DIF), targeting, and reliability. Rating scale analysis showed that the seven scale steps were not utilized in the intended manner and that a shortening to five categories would be beneficial. Twelve out of the 13 items showed acceptable goodness-of-fit and 43 % of the variance was explained by the SOC dimension in the principal components analysis. There was no DIF between subgroups in the sample. The items were well targeted to the sample SOC level with no ceiling or floor effects. Item and person reliability were good and the person separation index was 2.05 indicating that the scale can separate three different levels of SOC, which corresponds well to its theoretical base. The SOC scale is generally well functioning; however, the three components of SOC seem to influence the PCA results. The scale would benefit from a reduction from seven to five scale steps, which would need to be investigated further.
Acta Oncologica, 2015
background. Being diagnosed with cancer constitutes not only an immediate threat to health, but c... more background. Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients' experiences of fertility-related communication and how they reason about the risk of future infertility. Material and methods. Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis. results. The analysis resulted in three sub-themes, 'Getting to know', 'Reacting to the risk' and 'Handling uncertainty', and one main theme 'Women more vulnerable when facing risk for infertility', indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation. conclusions. Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatmentinduced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.
This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgki... more This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin's lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n ¼ 121) were compared with a randomly selected sample of the general population in Stockholm (n ¼ 236). The results showed that the most commonly nominated areas (>50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.
PLoS ONE, 2014
HIV-related stigma has negative consequences for infected people&... more HIV-related stigma has negative consequences for infected people's lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, data quality, and reliability. The HIV stigma scale, developed by Berger, Ferrans, and Lashley (2001), was distributed to a cross-sectional sample of people living with HIV in Sweden (n = 194). The psychometric evaluation included exploratory factor analysis together with an analysis of the distribution of scores, convergent validity by correlations between the HIV stigma scale and measures of emotional well-being, and an analysis of missing items and floor and ceiling effects. Reliability was assessed using Cronbach's α. The exploratory factor analysis suggested a four-factor solution, similar to the original scale, with the dimensions personalised stigma, disclosure concerns, negative self-image, and concerns with public attitudes. One item had unacceptably low loadings and was excluded. Correlations between stigma dimensions and emotional well-being were all in the expected direction and ranged between -0.494 and -0.210. The instrument generated data of acceptable quality except for participants who had not disclosed their HIV status to anybody. In line with the original scale, all subscales demonstrated acceptable internal consistency with Cronbach's α 0.87-0.96. A 39-item version of the HIV stigma scale used in a Swedish context showed satisfactory construct validity and reliability. Response alternatives are suggested to be slightly revised for items assuming the disclosure of diagnosis to another person. We recommend that people that have not disclosed should skip all questions belonging to the dimension personalised stigma. Our analysis confirmed construct validity of the instrument even without this dimension.
Supportive Care in Cancer, 2014
The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertili... more The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertility distress among survivors 3 to 7 years after cancer treatment in reproductive age. Cancer survivors were identified in national population-based cancer registries. Eligible subjects presented with selected cancer diagnoses between 2003 and 2007 between the ages of 18 to 45. A postal questionnaire including study-specific questions, the Short-Form 36 Health Survey and the Fertility Problem Inventory, was sent to 810 survivors, and 484 participated (60 % response). Most survivors who had a pretreatment desire for children still wanted children 3-7 years after treatment, and this group was characterized by young age and being childless at diagnosis. In addition, a substantial group of survivors (n = 55, 17 %) that did not have a pretreatment desire for children had changed their mind about wanting children after treatment. About a third of the survivors with a desire to have children had experienced difficulties achieving a pregnancy after the cancer treatment, and an unfulfilled desire to have children was associated with worse mental health. Survivors presently facing difficulties achieving a pregnancy reported moderate levels of infertility distress and expressed low interest in using gamete donation. Health professionals in cancer care need to be aware that patients' plans for future children may change, particularly if they are young and childless. All patients of reproductive age should be provided with adequate information about the impact of cancer treatment on future fertility and fertility preservation.
Scandinavian Journal of Gastroenterology, 2012
Objectives. To compare ratings of quality of care between patients with genetic cancer who receiv... more Objectives. To compare ratings of quality of care between patients with genetic cancer who receive specialized care with patients who receive non-specialized care while controlling for socio-demographic and clinical variables; Material and methods. All patients in a national cohort of adult patients diagnosed with familial adenomatous polyposis (FAP) who had undergone prophylactic colorectal surgery were assessed (n = 276, response rate 76%). Quality of care was measured with the Quality of Care from the Patient Perspective (QPP). Univariate and multivariate logistic regression analyses were performed; Results. Patients receiving specialized care were significantly more likely to report the quality of care as better in all three QPP dimensions investigated than those receiving non-specialized care; Conclusions. In order to promote and maintain good quality of care for surgically treated patients with FAP, and to minimize the risk of cancer, specialized care, including continuity and easy access of health care professionals, should be provided.
Quality of Life Research, 2005
Individual measures of quality of life (QoL) have been initiated to overcome the possible limitat... more Individual measures of quality of life (QoL) have been initiated to overcome the possible limitations with standardized measures using predefined domains for evaluation. The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) uses personal interviews to explore the five most important areas in life, both positive and negative, crucial for QoL. The nominated areas are rated regarding satisfaction and weighted to capture the importance of each selected area. The Swedish version has been extended with a disease-specific module, which evaluates the areas in life influenced by disease. The aim of this study was to validate the disease-specific SEIQoL-DW and furthermore, to evaluate the influence of the importance ratings on the overall index score in a cohort of Hodgkin lymphoma survivors. The results support the construct validity of the disease-specific SEIQoL-DW and indicate that the instrument appears to be a sensitive measure with ability to differentiate between groups with disparate subjective health status. The SEIQoL-DW succeeds to capture both positive and negative areas in life influenced by disease. The present study gave no evidence that the weighting procedure has any impact on the total index. The results support the use of the new extended version including a disease-specific module.
Quality of Life Research, 2009
Purpose To review published studies regarding the use, feasibility and psychometric performance o... more Purpose To review published studies regarding the use, feasibility and psychometric performance of the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) in clinical research. Methods Systematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results. Results Thirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL, life satisfaction and mental health and weakly with measures of functional status and health. Conclusion The SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument's focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.
Psycho-Oncology, 2008
Objective: The aim was to prospectively measure quality of life in patients with malignant blood ... more Objective: The aim was to prospectively measure quality of life in patients with malignant blood disorders following stem cell transplantation (SCT) using an individualized and a standardized measure.
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.
Pediatric Blood & Cancer, 2013
Statement of the Purpose. Children and families at all stages of the cancer trajectory will poten... more Statement of the Purpose. Children and families at all stages of the cancer trajectory will potentially experience much suffering and long-term psychosocial-behavioral consequences. Although individual investigators have contributed to the knowledge about quality of life, coping, and psychosocial functioning in these individuals the overall impact of this work on the quality of care and quality of life has been minimal.
Quality of Life Research, 2004
In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymph... more In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymphoma (HL) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary. A better understanding of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients. The populations were long-term survivors of HL (n=121) and a
Health and Quality of Life Outcomes
BACKGROUND: Cancer is among the three leading causes of death in low income countries and the hig... more BACKGROUND: Cancer is among the three leading causes of death in low income countries and the highest increase with regard to incidence figures for cancer diseases are found in these countries. This is the first report of the health-related quality of life (HRQOL) and needs of care and support of adult Tanzanians with cancer. METHODS: A mixed-methods design was used. The study was conducted at Ocean Road Cancer Institute (ORCI) in Dar es Salaam, Tanzania. One hundred and one patients with a variety of cancer diagnoses treated and cared for at ORCI answered the Kiswahili version of the EORTC QLQ-C30 investigating HRQOL. Thirty-two of the patients participated in focus group interviews discussing needs of care and support. Data from focus group interviews were analyzed with content analysis. RESULTS: The findings show that the patients, both women and men, report a low quality of life, especially with regard to physical, role, and social function and a high level of symptoms and probl...
Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses, Jan 12, 2015
The aim was to investigate how childhood cancer survivors perceive school and whether their perce... more The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors...
Human Reproduction, 2014
study question: What do adolescent and young adult survivors of childhood cancer think about the ... more study question: What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? summary answer: The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future.
European Journal of Cancer Supplements, 2007
Nursing Programme and models developed further at a consensus meeting with professionals and the ... more Nursing Programme and models developed further at a consensus meeting with professionals and the young people. Our aim is to give a brief overview of this study and focus on the findings exclusively to encourage participants to reflect on the possibilities and challenges of service provision for adult survivors of childhood cancer. This joint presentation by a nurse and cancer survivor will enable both professional and survivor perspectives to be shared and debated.
Quality of Life Research, 2014
The sense of coherence (SOC) scale is widely used and has an extensive history in research. The p... more The sense of coherence (SOC) scale is widely used and has an extensive history in research. The psychometric properties of the SOC scale have been investigated using classic test theory, but modern test theory enables a more multifaceted investigation of the properties of the SOC scale. The aim of this study was to explore the measurement properties of the SOC scale using the Rasch measurement model. SOC questionnaires from a sample of 623 healthy adults were analysed using Rasch analysis. Aspects analysed were rating scale functioning, item fit, unidimensionality, differential item functioning (DIF), targeting, and reliability. Rating scale analysis showed that the seven scale steps were not utilized in the intended manner and that a shortening to five categories would be beneficial. Twelve out of the 13 items showed acceptable goodness-of-fit and 43 % of the variance was explained by the SOC dimension in the principal components analysis. There was no DIF between subgroups in the sample. The items were well targeted to the sample SOC level with no ceiling or floor effects. Item and person reliability were good and the person separation index was 2.05 indicating that the scale can separate three different levels of SOC, which corresponds well to its theoretical base. The SOC scale is generally well functioning; however, the three components of SOC seem to influence the PCA results. The scale would benefit from a reduction from seven to five scale steps, which would need to be investigated further.
Acta Oncologica, 2015
background. Being diagnosed with cancer constitutes not only an immediate threat to health, but c... more background. Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients' experiences of fertility-related communication and how they reason about the risk of future infertility. Material and methods. Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis. results. The analysis resulted in three sub-themes, 'Getting to know', 'Reacting to the risk' and 'Handling uncertainty', and one main theme 'Women more vulnerable when facing risk for infertility', indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation. conclusions. Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatmentinduced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.
This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgki... more This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin's lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n ¼ 121) were compared with a randomly selected sample of the general population in Stockholm (n ¼ 236). The results showed that the most commonly nominated areas (>50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.
PLoS ONE, 2014
HIV-related stigma has negative consequences for infected people&... more HIV-related stigma has negative consequences for infected people's lives and is a barrier to HIV prevention. Therefore valid and reliable instruments to measure stigma are needed to enable mapping of HIV stigma. This study aimed to evaluate the psychometric properties of the HIV stigma scale in a Swedish context with regard to construct validity, data quality, and reliability. The HIV stigma scale, developed by Berger, Ferrans, and Lashley (2001), was distributed to a cross-sectional sample of people living with HIV in Sweden (n = 194). The psychometric evaluation included exploratory factor analysis together with an analysis of the distribution of scores, convergent validity by correlations between the HIV stigma scale and measures of emotional well-being, and an analysis of missing items and floor and ceiling effects. Reliability was assessed using Cronbach's α. The exploratory factor analysis suggested a four-factor solution, similar to the original scale, with the dimensions personalised stigma, disclosure concerns, negative self-image, and concerns with public attitudes. One item had unacceptably low loadings and was excluded. Correlations between stigma dimensions and emotional well-being were all in the expected direction and ranged between -0.494 and -0.210. The instrument generated data of acceptable quality except for participants who had not disclosed their HIV status to anybody. In line with the original scale, all subscales demonstrated acceptable internal consistency with Cronbach's α 0.87-0.96. A 39-item version of the HIV stigma scale used in a Swedish context showed satisfactory construct validity and reliability. Response alternatives are suggested to be slightly revised for items assuming the disclosure of diagnosis to another person. We recommend that people that have not disclosed should skip all questions belonging to the dimension personalised stigma. Our analysis confirmed construct validity of the instrument even without this dimension.
Supportive Care in Cancer, 2014
The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertili... more The aim was to investigate desire for children, difficulties achieving a pregnancy, and infertility distress among survivors 3 to 7 years after cancer treatment in reproductive age. Cancer survivors were identified in national population-based cancer registries. Eligible subjects presented with selected cancer diagnoses between 2003 and 2007 between the ages of 18 to 45. A postal questionnaire including study-specific questions, the Short-Form 36 Health Survey and the Fertility Problem Inventory, was sent to 810 survivors, and 484 participated (60 % response). Most survivors who had a pretreatment desire for children still wanted children 3-7 years after treatment, and this group was characterized by young age and being childless at diagnosis. In addition, a substantial group of survivors (n = 55, 17 %) that did not have a pretreatment desire for children had changed their mind about wanting children after treatment. About a third of the survivors with a desire to have children had experienced difficulties achieving a pregnancy after the cancer treatment, and an unfulfilled desire to have children was associated with worse mental health. Survivors presently facing difficulties achieving a pregnancy reported moderate levels of infertility distress and expressed low interest in using gamete donation. Health professionals in cancer care need to be aware that patients' plans for future children may change, particularly if they are young and childless. All patients of reproductive age should be provided with adequate information about the impact of cancer treatment on future fertility and fertility preservation.
Scandinavian Journal of Gastroenterology, 2012
Objectives. To compare ratings of quality of care between patients with genetic cancer who receiv... more Objectives. To compare ratings of quality of care between patients with genetic cancer who receive specialized care with patients who receive non-specialized care while controlling for socio-demographic and clinical variables; Material and methods. All patients in a national cohort of adult patients diagnosed with familial adenomatous polyposis (FAP) who had undergone prophylactic colorectal surgery were assessed (n = 276, response rate 76%). Quality of care was measured with the Quality of Care from the Patient Perspective (QPP). Univariate and multivariate logistic regression analyses were performed; Results. Patients receiving specialized care were significantly more likely to report the quality of care as better in all three QPP dimensions investigated than those receiving non-specialized care; Conclusions. In order to promote and maintain good quality of care for surgically treated patients with FAP, and to minimize the risk of cancer, specialized care, including continuity and easy access of health care professionals, should be provided.
Quality of Life Research, 2005
Individual measures of quality of life (QoL) have been initiated to overcome the possible limitat... more Individual measures of quality of life (QoL) have been initiated to overcome the possible limitations with standardized measures using predefined domains for evaluation. The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) uses personal interviews to explore the five most important areas in life, both positive and negative, crucial for QoL. The nominated areas are rated regarding satisfaction and weighted to capture the importance of each selected area. The Swedish version has been extended with a disease-specific module, which evaluates the areas in life influenced by disease. The aim of this study was to validate the disease-specific SEIQoL-DW and furthermore, to evaluate the influence of the importance ratings on the overall index score in a cohort of Hodgkin lymphoma survivors. The results support the construct validity of the disease-specific SEIQoL-DW and indicate that the instrument appears to be a sensitive measure with ability to differentiate between groups with disparate subjective health status. The SEIQoL-DW succeeds to capture both positive and negative areas in life influenced by disease. The present study gave no evidence that the weighting procedure has any impact on the total index. The results support the use of the new extended version including a disease-specific module.
Quality of Life Research, 2009
Purpose To review published studies regarding the use, feasibility and psychometric performance o... more Purpose To review published studies regarding the use, feasibility and psychometric performance of the schedule for the evaluation of individual quality of life-direct weighting (SEIQoL-DW) in clinical research. Methods Systematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results. Results Thirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL, life satisfaction and mental health and weakly with measures of functional status and health. Conclusion The SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument's focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.
Psycho-Oncology, 2008
Objective: The aim was to prospectively measure quality of life in patients with malignant blood ... more Objective: The aim was to prospectively measure quality of life in patients with malignant blood disorders following stem cell transplantation (SCT) using an individualized and a standardized measure.
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.
Pediatric Blood & Cancer, 2013