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1.	Ring, Lena, et al. (author) QOL assessments in clinical practice : usefulness of ERORTC-QLQC-30 and the SEIOQL 2014 In: Quality of Life Research. - 0962-9343 .- 1573-2649. ; 23, s. 104-104 Journal article (other academic/artistic)
2.	Wettergren, Lena, et al. (author) Comparing two versions of the Schedule for Evaluation of Individual Quality of Life in patients with advanced cancer 2011 In: Acta Oncologica. - 0284-186X .- 1651-226X. ; 50:5, s. 648-652 Journal article (peer-reviewed)abstract Background. The aim was to compare two individualized patient reported outcomes or the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) measuring quality of life in general, and the disease-related version (SEIQoL-DR) measuring quality of life related to disease. Both instruments have been used in clinical practice settings within oncology. The instruments were compared with regard to feasibility, the areas nominated by patients as important and patients' ratings of how they were doing in these areas (Index scores). Material and methods. The study included 40 patients with gastrointestinal cancer. All patients completed both versions of the instrument on a touch screen computer in relation to a medical consultation. Firstly, the participants were invited to nominate the five domains she/he currently considered to be most important in life. Secondly, they were asked to rate how they were doing in each of these domains. Finally, they were asked to quantify the relative importance of each area. Cohen's effect sizes were calculated to illuminate the clinical importance of mean value differences. Results. Both instruments took less than ten minutes to complete and the procedure was considered feasible by both patients and interviewers. The proportion of patients nominating the same areas in the two versions did not differ, however, the SEIQoL-DW Index score was significantly higher than the corresponding score for the SEIQoL-DR. The detected difference in the mean score measured by effect size was medium. Conclusion. The magnitude of the effect size of the difference in Index score imply that the two versions tap into different constructs, i.e. quality of life (QoL) versus health-related QoL (HRQL), supporting the construct validity of the two versions of the instrument. The SEIQoL-DW and the SEIQoL-DR should be considered as complementary rather than interchangeable when used in patients with cancer.
3.	Wettergren, Lena, et al. (author) Comparison of two instruments for measurement of quality of life in clinical practice - a qualitative study 2014 In: BMC Medical Research Methodology. - : Springer Science and Business Media LLC. - 1471-2288. ; 14, s. 115- Journal article (peer-reviewed)abstract Background: The study aimed to investigate the meaning patients assign to two measures of quality of life: the Schedule for Evaluation of Individual Quality of Life Direct Weighting (SEIQoL-DW) and the SEIQoL-DW Disease Related (DR) version, in a clinical oncology setting. Even though the use of quality of life assessments has increased during the past decades, uncertainty regarding how to choose the most suitable measure remains. SEIQoL-DW versions assesses the individual's perception of his or her present quality of life by allowing the individual to nominate the domains to be evaluated followed by a weighting procedure resulting in qualitative (domains) as well as quantitative outcomes (index score). Methods: The study applied a cross-sectional design with a qualitative approach and collected data from a purposeful sample of 40 patients with gastrointestinal cancer. Patients were asked to complete two measures, SEIQoL-DW and the SEIQoL-DR, to assess quality of life. This included nomination of the areas in life considered most important and rating of these areas; after completion patients participated in cognitive interviews around their selections of areas. Interviews were audiotaped and transcribed verbatim which was followed by analysis using a phenomenographic approach. Results: The analyses of nominated areas of the two measures resulted in 11 domains reflecting what patients perceived had greatest impact on their quality of life. Analysis of the cognitive interviews resulted in 16 thematic categories explaining the nominated domains. How patients reflected around their quality of life appeared to differ by version (DW vs. DR). The DW version more often related to positive aspects in life while the DR version more often related to negative changes in life due to having cancer. Conclusions: The two SEIQoL versions tap into different concepts; health-related quality of life, addressing losses and problems related to having cancer and, quality of life, more associated with aspects perceived as positive in life. The SEIQoL-DR and the SEIQoL-DW are recommended in clinical practice to take both negative and positive aspects into account and acting on the problems of greatest importance to the patient.
4.	Ahmed, Sara, et al. (author) Applications of health-related quality of life for guiding health care : advances in response shift research 2009 In: Journal of Clinical Epidemiology. - : Elsevier. - 0895-4356 .- 1878-5921. ; 62:11, s. 1115-1117 Journal article (peer-reviewed)
5.	Andersén, Mikael, 1985-, et al. (author) “It’s about how you take in things with your brain” - young people’s perspectives on mental health and help seeking : an interview study 2024 In: BMC Public Health. - : BioMed Central (BMC). - 1471-2458. ; 24:1 Journal article (peer-reviewed)abstract Introduction: Poor mental health in young people has become a growing problem globally over the past decades. However, young people have also been shown to underutilize available healthcare resources. The World Health Organisation (WHO) has formulated guidelines for youth-friendly health services (YFHSs) to increase youth participation in healthcare. Still, little is known about how young people using these services perceive mental health, indicating a knowledge gap concerning the subjective evaluation of their mental health.Aim: To investigate how young people visiting youth health clinics (YHC) perceive the concept of mental health and factors they view as central to maintaining mental health.Methods: In total 21 interviews were carried out, 16 in 2018, and 5 in 2023 to assure no changes in findings after the COVID-19 pandemic. Subjects were recruited during visits to youth health clinics (YHCs) in mid-Sweden and were aged 15–23 years. Recruitment strived to achieve heterogeneity in the sample concerning gender, sexual orientation, gender identity and age. Interviews were transcribed and analysed using qualitative content analysis.Findings: Findings of the analysis revealed two themes, “Mental health is helped and hindered by the surroundings” and “Mental health is difficult to understand and difficult to achieve”. The participants described their health as highly dependent on their social surroundings, and that these are important to maintaining health but may also affect health negatively. They described mixed experiences of the health care services and mentioned prerequisites for seeking care for mental health problems such as accessibility and respect for their integrity, including the right to turn down offered treatment. The informants also viewed mental health as an ongoing undertaking that one must work for, and that it is sometimes difficult to know what constitutes mental health. They also expressed a need from healthcare services to enquire about their health, and to show an active interest in how they are doing.Conclusions: Findings underline the need of young people’s individual needs to be met in the healthcare system and their vulnerability to their social surroundings. Health status assessments in young people should consider social and individual factors to fully capture mental health.
6.	Bardage, Carola, et al. (author) Health care professionals’ perspectives on automated multi-dose drug dispensing 2014 In: Pharmacy Practice. - 1885-642X .- 1886-3655. ; 12:4 Journal article (peer-reviewed)abstract Background: During the 1980s, manual repackaging of multi-dose medications from pharmacies in Sweden was successively substituted with automated multi-dose drug dispensing (MDD). There are few studies evaluating the consequences of automated MDD with regard to patient safety, and those that investigate this issue are not very extensive.Objectives: To investigate Swedish health care professionals’ perceived experience of automated MDD and its effects on patient adherence and patient safety.Methods: Three questionnaire forms, one for physicians, nurses, and assistant nurses/nursing assistants, were developed based on reviews of the literature and pilot testing of the questions in the intended target groups. The target groups were health professionals prescribing or administrating MDD to patients. A sample (every sixth municipality) was drawn from the sampling frame of Swedish municipalities, resulting in 40 municipalities, about 14% of all municipalities in Sweden. Email addresses of general practitioners were obtained from county councils, while the municipalities assisted in getting contact details for nurses, assistant nurses and nursing assistants. A total of 915 questionnaires were distributed electronically to physicians, 515 to nurses, and 4,118 to assistant nurses/nursing assistants. The data were collected in September and October 2012.Results: The response rate among physicians, nurses and assistant nurses/nursing assistants was 31%, 43% and 23%, respectively. The professionals reported that automated MDD reduces duplication of medication, contributes to correct dosages, helps patients take their medication at the right time, and reduces confusion among patients. Fifteen per cent of the physicians and about onethird of the nurses and assistant nurses/nursing assistants reported that generic substitution makes it more difficult for the patient to identify the various medicines available in the sachets. The physicians did, however, note that prescribing medicine to patients with automated MDD is complicated and can be a risk for patient safety. Both physicians and nurses requested more information on and training in automated MDD. They also asked for more medication reviews.Conclusions: The professionals generally had a positive attitude to automated MDD with regard to improved medication adherence, but said they believed that the electronic prescribing system posed a safety risk for patients.
7.	Bardage, Carola, et al. (author) Health-Care Professionals' Perspectives on Multi-Dose Dispensed Medicines 2013 In: Pharmacoepidemiology and Drug Safety. - 1053-8569 .- 1099-1557. ; 22, s. 251-251 Journal article (other academic/artistic)
8.	Bengtsson, Ulrika, et al. (author) Developing an interactive mobile phone self-report system for self-management of hypertension. Part 1: Patient and professional perspectives 2014 In: Blood Pressure. - : Informa UK Limited. - 0803-7051 .- 1651-1999. ; 23:5, s. 288-295 Journal article (peer-reviewed)abstract Low adherence remains a struggle in hypertension management, despite improvement efforts. Presuming that increased patient participation is a possible approach, we collaborated with patients and healthcare professionals to design a self-report system to support self-management. The study aimed to explore and describe relevant aspects of hypertension and hypertension treatment, for use in the development of an interactive mobile phone self-report system. It further aimed to suggest which clinical measures, lifestyle measures, symptoms and side-effects of treatment would be meaningful to include in such a system. Five focus group interviews were performed with 15 patients and 12 healthcare professionals, and data was analysed using thematic analysis. Patients suggested trust, a good relationship with caregivers, and well-being as important aspects of hypertension self-management. Furthermore, they regarded blood pressure, dizziness, stress, headache and tiredness as important outcomes to include. Patients sought to understand interconnections between symptoms and variations in blood pressure, whilst healthcare professionals doubted patients’ ability to do so. Healthcare professionals emphasized accessibility, clear and consistent counselling, complication prevention and educational efforts. The study presents aspects of importance for follow-up to understand the interplay between blood pressure and daily life experiences for patients with hypertension. Read More: http://informahealthcare.com.ezproxy.ub.gu.se/doi/abs/10.3109/08037051.2014.883203
9.	Bengtsson, Ulrika, et al. (author) Developing an interactive mobile phone self-report system for self-management of hypertension. Part 2 : Content validity and usability 2014 In: Blood Pressure. - : Informa UK Limited. - 0803-7051 .- 1651-1999. ; 23:5, s. 296-306 Journal article (peer-reviewed)abstract Self-management support tools using technology may improve adherence to hypertension treatment. There is a need for user-friendly tools facilitating patients' understanding of the interconnections between blood pressure, wellbeing and lifestyle. This study aimed to examine comprehension, comprehensiveness and relevance of items, and further to evaluate the usability and reliability of an interactive hypertension-specifi c mobile phone self-report system. Areas important in supporting self-management and candidate items were derived from five focus group interviews with patients and healthcare professionals (n = 27), supplemented by a literature review. Items and response formats were drafted to meet specifications for mobile phone administration and were integrated into a mobile phone data-capture system. Content validity and usability were assessed iteratively in four rounds of cognitive interviews with patients (n = 21) and healthcare professionals (n = 4). Reliability was examined using a test-retest. Focus group analyses yielded six areas covered by 16 items. The cognitive interviews showed satisfactory item comprehension, relevance and coverage; however, one item was added. The mobile phone self-report system was reliable and perceived easy to use. The mobile phone self-report system appears efficiently to capture information relevant in patients' self-management of hypertension. Future studies need to evaluate the effectiveness of this tool in improving self-management of hypertension in clinical practice.
10.	Bengtsson, Ulrika, et al. (author) Development of a mobile phone self-report system for persons with hypertension: focus group interviews with patients and providers 2013 In: Kardiovaskulära Vårmötet 2013. Conference paper (peer-reviewed)abstract Ulrika Bengtsson, Lena Ring, Inger Hallberg, Karin Kjellgren Background: Hypertension is a risk factor for cardiovascular disease for which poor adherence to therapy becomes a substantial threat to health. Major efforts have been made to explore reasons for poor adherence but few successful interventions have been designed. There is a need for effective strategies tailored for the unique needs of persons with hypertension. We set out to explore and describe relevant aspects of hypertension and hypertension treatment, from the perspective of persons with hypertension and health care providers. Methods: Focus group interviews were performed with 15 persons with hypertension and 12 health care providers and analysed according to thematic analysis. Results: Persons with hypertension perceived trust, relationship to providers, well-being and prevention of complications as important aspects of hypertension care. Further they sought to understand the interplay between symptoms and variation of blood pressure. The providers emphasised accessibility, clear and consistent counselling, prevention of complications and educational efforts but doubted patients’ ability to be participating partners in care. Conclusion: The study presents aspects that persons with hypertension and health care providers deem important in hypertension self-management. Our finding provides input for future outcome measures, such as self-reports, and may serve as a foundation for the development of a self-report system for persons with hypertension. It may further increase the understanding of hypertension and treatment, from a person-centred perspective.
11.	Bengtsson, Ulrika, et al. (author) Development of a mobile phone self-report system for persons with hypertension: focus group interviews with patients and providers 2013 In: HPH 21 st International Conference on Health Promoting Hospitals and Health Services. Conference paper (peer-reviewed)abstract Introduction: Hypertension is a risk factor for cardiovascular disease for which poor adherence to therapy becomes a substantial threat to health. Major efforts have been made to explore reasons for poor adherence but few successful interventions have been designed. There is a need for effective strategies designed to facilitate an increased understanding for the complexity of hypertension and treatment by strengthening of patient participation as well as patient empowerment. Purpose / Methods: The aim of this study was to explore and describe relevant aspects of hypertension and hypertension treatment, from the perspective of persons with hypertension and health care providers. Focus group interviews were performed with 15 persons with hypertension and 12 health care providers and analysed according to thematic analysis. Results: Persons with hypertension perceived trust, relationship to providers, well-being and prevention of complications as important aspects of hypertension care. Further they sought to understand the interplay between symptoms and variation of blood pressure. The providers emphasised accessibility, clear and consistent counselling, prevention of complications and educational efforts but doubted patients’ ability to be participating partners in care. Conclusion: The study presents aspects that persons with hypertension and health care providers deem important in hypertension management. Our finding provides input for future outcome measures, such as self-reports and may serve as a foundation for the development of a self-report system for persons with hypertension. They may further facilitate patient empowerment by increasing the understanding of hypertension and its’ treatment, from a person-centred perspective.
12.	Bengtsson, Ulrika, et al. (author) Development of a mobile phone self-report system for persons with hypertension: focus group interviews with patients and providers 2013 Conference paper (other academic/artistic)
13.	Butler, Stephen, et al. (author) The utility/futility of medications for neuropathic pain : an observational study 2019 In: Scandinavian Journal of Pain. - : Walter de Gruyter GmbH. - 1877-8860 .- 1877-8879. ; 19:2, s. 327-335 Journal article (peer-reviewed)abstract Background and aimsThe RELIEF (Real Life) study by AstraZeneca was designed as an observational study to validate a series of Patient Reported Outcome (PRO) questionnaires in a mixed population of subjects with neuropathic pain (NP) coming from diabetes, neurology and primary care clinics. This article is an analysis of a subset of the information to include the medications used and the effects of pharmacological treatment over 6 months. The RELIEF study was performed during 2010–2013.MethodsSubjects were recruited from various specialty clinics and one general practice clinic across Canada. The subjects were followed for a total of 2 years with repeated documentation of their status using 10 PROs. A total of 210 of the recruited subjects were entered into the data base and analyzed. Of these, 123 had examination-verified painful diabetic neuropathy (PDN) and 87 had examination-verified post-traumatic neuropathy (PTN). To evaluate the responsiveness of the PROs to change, several time points were included and this study focusses primarily on the first 6 months. Subjects also maintained a diary to document all medications, both for pain and other medical conditions, including all doses, start dates and stop dates, that could be correlated to changes in the PRO parameters.ResultsRELIEF was successful in being able to correlate the validity of the PROs and this data was used for further AstraZeneca Phase 1, 2, and 3 clinical trials of NP. To our surprise, there was very little change in pain and low levels of patient satisfaction with treatment during the trial. Approximately 15% of the subjects reported improvement, 8% worsening of pain, the remainder reported pain unchanged despite the use of multiple medications at multiple doses, alone or in combination with frequent changes of medications and doses over the study. Those taking predominantly NSAIDs (COX-inhibitors) did no worse than those taking the standard recommended medications against NP.ConclusionsSince this is a real-life study, it reflects the clinical utility of a variety of internationally recommended medications for the treatment of NP. In positive clinical trials of these medications in selected "ideal" subjects, the effects are not overwhelming – 30% are 50% improved on average. This study shows that in the real world the results are not nearly as positive and reflects information from non-published negative clinical trials.ImplicationsWe still do not have very successful medications for NP. Patients probably differ in many respects from those subjects in clinical trials. This is not to negate the use of recommended medications for NP but an indication that success rates of treatment are likely to be worse than the data coming from those trials published by the pharmaceutical industry.
14.	Fagerlind, Hanna, 1979-, et al. (author) Barriers against psychosocial communication: Oncologists' perceptions 2013 In: Journal of Clinical Oncology. - 0732-183X .- 1527-7755. ; 31:30 Journal article (peer-reviewed)
15.	Fagerlind, Hanna, et al. (author) Communication analysis in oncology care : Performance of a combination of a content analysis system and a global scale 2011 In: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 20:9, s. 992-1000 Journal article (peer-reviewed)abstract Objective: The aim was to assess the feasibility and reliability of Velikova's Content Analysis System (VCAS) and the Medical Interaction Process System (MIPS) global scale for evaluation of communication in oncology care.Methods: Seventy routine physician consultations with gastro-intestinal (GI) cancer patients were audio-recorded. Two coders applied VCAS and MIPS global scale to the consultations. VCAS captures aspects of communication like symptoms, side effects, functional issues (e.g. emotional, social, physical), health-related quality of life and medical decision making. MIPS global scale measures the total impression of the consultation, e.g. patient centredness and psychosocial focus.Results: In total, 61 of 70 consultations were coded. The coding took twice the consultations' actual durations in minutes for VCAS. The time for coding MIPS global scale equalled the consultations length. However, the coder had then listened to the consultation twice before, coding for VCAS. Cohen's kappa for all aspects measured by VCAS varied between 0.20 and 1, mean 0.80. One category (Info on test) had a kappa of 0.20, the other categories were all above 0.60. Weighted Kappa for MIPS global scale varied between 0.25 and 0.73, mean 0.42.Conclusions: VCAS and MIPS global scale is a feasible combination of tools for evaluating patient-physician communication regarding content, medical decision making and global aspects of communication. VCAS showed high reliability. The MIPS global scale showed lower reliability, due to its sensitivity to the individual coders' unique values, common for all global scales. Further development of the combination of content and global instruments would be valuable.
16.	Fagerlind, Hanna, et al. (author) Different perspectives on communication quality and emotional functioning during routine oncology consultations 2012 In: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 88:1, s. 16-22 Journal article (peer-reviewed)abstract Objective: To determine quality of communication in routine oncology consultations from patient, physician, and observer perspectives, and to determine agreement of emotional function content in consultations from these three perspectives.Methods: In total, 69 consultations were included. Perceived quality of communication and whether or not emotional functioning had been discussed was evaluated with patient- and physician-reported questionnaires. Observer perspective was evaluated by content analysis of audio records of the consultations. Agreement between perspectives was analyzed and means compared using linear mixed models.Results: The patients' ratings of communication quality differed significantly from those of both the physician and observer. Observer and physician scores did not differ significantly. Physicians rated emotional functioning as discussed more often than was reported from patient and observer perspectives.Conclusion: The patients' view of the quality of communication differed from that of the physician and observer. Whether emotional functioning was discussed or not was also perceived differently by patients, physicians, and observer.Practice implications: The underpinnings and implications of these results need to be further explored regarding how to move toward a higher degree of shared understanding, where different perspectives are more in alignment, and how to develop more valid methods for evaluating communication.
17.	Fagerlind, Hanna, et al. (author) Patient-physician communication during oncology consultations 2008 In: Psycho-Oncology. - : Wiley. - 1057-9249 .- 1099-1611. ; 17:10, s. 975-985 Journal article (peer-reviewed)abstract OBJECTIVE: The aim of this study was to characterize the content of patient-physician communication in standard oncology care. METHODS: The sample consisted of 19 patients with gastrointestinal cancer. The consultations were audio-recorded, transcribed verbatim, and analyzed according to qualitative content analysis. RESULTS: The analysis resulted in seven main categories: Disease and treatment, Healthcare planning, Everyday living, Psychological well-being, Coping with disease, Expressions of concerns and feelings, and Other aspects of communication. The main focus during the consultations was on disease and treatment. Physicians tended to concentrate on response to treatment and types and severity of side effects and how to treat them. More patient-centered subjects of psychosocial character like coping and psychological well-being were discussed only briefly, if at all. CONCLUSIONS: This study adds to the information given by the existing communication analysis systems, and hence we suggest a development of the psychosocial content categories of those systems to make them more valid.
18.	Fagerlind, Hanna, 1979- (author) Patient-Physician Communication in Oncology Care : The character of, barriers against, and ways to evaluate patient-physician communication, with focus on the psychosocial dimensions 2012 Doctoral thesis (other academic/artistic)abstract The overall aim of this thesis was to characterize patient-physician communication in oncology care with focus on the content and quality of the consultations from the perspectives of patients, oncologists and observer. Further, the aim was to explore oncologists’ perceived barriers against psychosocial communication in out-patient consultations. Finally, the aim was to evaluate different methods for evaluating communication in this setting.Routine oncology out-patient consultations from two different hospitals were audio-recorded. After the consultations, patients and oncologists perceptions of the content and quality of the communication were assessed using a self-report questionnaire. A nation-wide survey was performed to assess oncologists’ perceived barriers against psychosocial communication. Finally, the audio-recorded consultations were used for evaluating inter-rater reliability and feasibility of two different communication analysis instruments.Patient-physician consultations in oncology care are focused on the physical aspects of disease and treatment, both in terms of how often these issues were discussed and in terms of the amount of time spent on discussing them. Psychosocial issues, such as the disease’s effects on patients’ emotional or social functioning, are not always discussed during consultations, and the time spent on such discussions is limited. When psychosocial issues are discussed during the medical consultations, they are most often patient-initiated. Reasons for why psychosocial aspects are seldom discussed during the medical consultations can be the barriers concerning this kind of communication perceived by a large majority (93%) of the oncologists. Barriers against psychosocial communication were identified at organizational levels (including guidelines, routines, and resources) and individual levels (including physicians’ knowledge and attitudes).Furthermore, this thesis shows that there are methods with high feasibility and reliability for evaluating the content of patient-physician communication, in large study samples in oncology care. The method (observation/self-report) and perspective (patient, physician, and observer) used when evaluating communication affects the results. This needs to be considered when choosing evaluation methods in intervention studies.There are reasons to continue to evaluate, promote and implement promising ways of achieving better communication in clinical practice. Research should focus on how to overcome barriers against psychosocial communication.
19.	Fagerlind, Hanna, et al. (author) Patients' understanding of the concepts of health and quality of life 2010 In: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 78:1, s. 104-110 Journal article (peer-reviewed)abstract OBJECTIVE: The aim of this study was to identify how persons' with rheumatoid arthritis (RA) understand the concepts of health and quality of life (QoL). METHODS: A phenomenograpic approach was used to gauge variations in understanding of health and QoL. Semistructured interviews were conducted with 22 persons having RA. The interviews were audiotaped, transcribed verbatim, and analyzed, resulting in a descriptive system consisting of categories and subcategories. RESULTS: Health was primarily associated with being healthy/being free from disease, being able to function normally, experiencing well-being, and having a healthy lifestyle. Two above-mentioned domains, "being healthy" and "being able to function normally" overlapped with respondents' understanding of QoL. Additional perceived domains included attitudes towards life and, social and physical environments. CONCLUSION: The results show that patients' understanding of the two concepts of health and QoL partially overlap and partially differ. PRACTICE IMPLICATIONS: Patients' understanding of the concepts is individual and diverse, which needs to be taken into account in patient-physician consultations to ensure good communication. Furthermore, the interpretation of results based on patient-reported outcomes instruments measuring health status and/or QoL needs to be further studied over time to identify possible changes in these conceptions.
20.	Frygner-Holm, Sara, et al. (author) Pretend Play as an Intervention for Children With Cancer : A Feasibility Study 2020 In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 37:1, s. 65-75 Journal article (peer-reviewed)abstract Children with cancer suffer from symptoms and burdensome treatments that often cause distress to children and their families. Mortality is one aspect of cancer diagnosis, while another is the quality of life and well-being during and after the treatment. By supporting children's communication, self-efficacy and coping ability in the care situation, children are given the possibilities for increased independence and participation and are allowed to develop an influence over their care. The aim of this study was to develop and evaluate the feasibility and acceptability of an adult-facilitated pretend play intervention for children with cancer. Five children with ongoing treatment for cancer were invited to a play intervention that consisted of six to eight sessions of structured pretend play aimed at increasing participation, independence, and well-being. A mixed method design was used to evaluate the feasibility and acceptability of the play intervention. Measures were collected before and after interventions, and in conjunction with every play session. Results suggest that the children enjoyed the play intervention. Findings indicate small improvements regarding self-efficacy in care situations and equal or increased quality of life for participants. A main finding was that no adverse events or increased worrying was reported in conjunction with play sessions. Therefore, the intervention is regarded as safe, feasible, and acceptable as reported by participants and their primary caregivers and a possible means of increasing participation and independence in children with a cancer diagnosis.
21.	Hallberg, Inger, 1956, et al. (author) Phases in development of an interactive mobile phone-based system to support self-management of hypertension 2014 In: Integrated blood pressure control. - : Dove Medical Press. - 1178-7104. ; 7, s. 19-28 Journal article (peer-reviewed)abstract Hypertension is a significant risk factor for heart disease and stroke worldwide. Effective treatment regimens exist; however, treatment adherence rates are poor (30%–50%). Improving self-management may be a way to increase adherence to treatment. The purpose of this paper is to describe the phases in the development and preliminary evaluation of an interactive mobile phone-based system aimed at supporting patients in self-managing their hypertension. A person-centered and participatory framework emphasizing patient involvement was used. An interdisciplinary group of researchers, patients with hypertension, and health care professionals who were specialized in hypertension care designed and developed a set of questions and motivational messages for use in an interactive mobile phone-based system. Guided by the US Food and Drug Administration framework for the development of patient-reported outcome measures, the development and evaluation process comprised three major development phases (1, defining; 2, adjusting; 3, confirming the conceptual framework and delivery system) and two evaluation and refinement phases (4, collecting, analyzing, interpreting data; 5, evaluating the self-management system in clinical practice). Evaluation of new mobile health systems in a structured manner is important to understand how various factors affect the development process from both a technical and human perspective. Forthcoming analyses will evaluate the effectiveness and utility of the mobile phone-based system in supporting the self-management of hypertension.
22.	Hansson, Johan, 1964-, et al. (author) Quality of life in peritoneal carcinomatosis after cytoreductive surgery and intraperitoneal chemotherapy 2012 Journal article (peer-reviewed)abstract Background:Cytoreductive surgery (CRS) plus intraperitoneal chemotherapy (IPC) is considered the most optimal treatment for peritoneal carcinomatosis (PC). Health-related quality of life (HRQL) after treatment is largely unknown. The aims were to assess HRQL in patients with PC treated with CRS and IPC and to analyse the influence of clinical variables on HRQL.Methods:HRQL was assessed prospectively between November 2001 and March 2005 in 64 consecutive patients with PC through two different self-administered instruments, EORTC QLQ-C30 v3.0 (QLQ-C30) and the SF-36 Health Survey (SF-36), preoperatively, and after 3 and 8 months. Results:For QLQ-C30, 44 (69%) and for SF-36, 42 (66%) out of 64 patients had a complete follow-up. Most scales were worsened at baseline compared to reference in both instruments. HRQL was reduced at 3-months in QLQ-C30 (physical, role and emotional functioning) and in SF-36 (physical summary score). At 8-months, all scales returned to baseline in QLQ-C30, except physical functioning which was still reduced and dyspnoea that was worsened. In SF-36, all values returned to baseline levels. At 8-months, presence of a stoma worsened social functioning and a high peritoneal cancer index decreased social functioning and global QoL, the use of hyperthermic intraperitoneal chemotherapy and 30-days postoperative morbidity had no impact on HRQL. Conclusion: CRS with IPC results in reasonable short-term HRQL despite high initial morbidity and an initial decrease in HRQL parameters. The study adds to the notion that this treatment appears beneficial in light of probable life prolongation, despite considerable toxicity.
23.	Hoefer, Stefan, et al. (author) Coronary Intervention Improves Disease Specific Health-Related Quality of Life but Not Individualised Quality of Life : A Potential Response Shift Effect? 2011 In: Applied Research in Quality of Life. - : Springer Science and Business Media LLC. - 1871-2584 .- 1871-2576. ; 6:1, s. 81-90 Journal article (peer-reviewed)abstract To explore potential response shift effects with different quality of life (QoL) instruments in cardiac patients undergoing coronary intervention. Study Design and Setting: Recalibration was assessed with the disease specific health-related quality of life (HRQL) instrument MacNew in combination with a then-test approach. Reconceptualisation and reprioritisation were assessed with the individualised QoL instrument SEIQoL-DW. Significant treatment effects were seen on the MacNew (global Delta: 0.6 +/- 1.1, p = 0.004) but not on the SEIQoL-DW (Delta: 3.3 +/- 16, p = 0.37) 6 months after coronary intervention. No recalibration effect was found on the MacNew then-test, while with the SEIQOL-DW potential response shift effects of reconceptualisation and reprioritisation were seen. For the first time response shift effects were explored in cardiac patients undergoing coronary intervention. This study confirmed that there is a clinically significant improvement in disease specific HRQL over time following successful coronary interventions. However, no treatment effect was seen for individualised QoL with the SEIQoL-DW. This might be due to reconceptualisation and reprioritisation response effects. Future studies need to focus on exploring response shift effects, and the interrelationship between its different components, captured by different patient reported outcome instruments in larger patient groups undergoing coronary interventions.
24.	Kettis, Åsa, et al. (author) Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? 2006 In: European Journal of Public Health. - : Oxford University Press (OUP). - 1101-1262 .- 1464-360X. ; 16:4, s. 433-440 Journal article (peer-reviewed)abstract Background: The aim of this study was to identify perceptions of the general public regarding research involving human tissues; to assess the public's willingness to donate samples to biobanks; and to identify factors associated with the willingness to donate samples. Methods: Cross-sectional survey. Postal questionnaires to a random sample of the general public in Sweden, 18-80 years of age (n = 6000) in October 2002 (response rate 49.4%; n = 2928). Results: A majority of the respondents had a positive attitude towards genetic research. Their trust in authorities' capability to evaluate the risks and benefits of genetic research varied. Individual university/hospital-based researchers received the greatest trust, while the county councils (health care providers), and the Swedish Parliament received the lowest trust. Most respondents (86.0%) would donate a linked blood sample for research purposes. Another 3.0% would provide an anonymous sample. In total, 78% of the respondents would agree to both donation and storage. The most common motive was benefit of future patients. The majority was indifferent to the funding source for the research and would delegate this judgment to the research ethics committee. After adjusting for covariates, those more likely to donate a sample were middle-aged, had children, had personal experience of genetic disease, were blood donors, had a positive attitude toward genetic research, and had trust in experts/institutions. Conclusions: The majority of the general public is willing to donate a sample to a biobank. The willingness is mainly driven by altruism, and depends on the public being well-informed and having trust in experts and institutions.
25.	Kettis, Åsa, et al. (author) Patients'and doctors' views of using the schedule for individual quality of life in clinical practice. 2007 In: JOURNAL OF SUPPORTIVE ONCOLOGY. - 1544-6794. ; 5:6, s. 281-287 Journal article (peer-reviewed)abstract This study explored patients’ and oncologists’ perceptions ofusing a computer-administered, individualized quality-of-life (QOL) in-strument to support an oncologic consultation. Twenty patients with gas-trointestinal cancer (50% female; mean age 60 years) at two hospitals inSweden completed the Schedule for the Evaluation of Individual Quality ofLife-Direct Weight (SEIQoL–DW) and the Disease-Related (DR) SEIQoL-DWand brought the results to the consultation. Afterwards, interviews wereconducted with all patients and six of eight doctors. All interviews wereaudiotaped, transcribed, and analyzed using an interpretivist approach.Most patients and doctors believed that the instrument would facilitatedetection of patients’ areas of concern and would support monitoringof patients’ QOL. This tool may empower the patient, give the doctor abroader picture of the patient, and influence clinical decision-making. TheSEIQoL-DW may be a systematic method of stimulating patient-centeredcare. It apparently encourages patients to reflect upon their own situationand allows them to be seen as whole persons. However, further quantita-tive evaluation of the intervention’s outcomes is required.
26.	Kettis, Åsa, et al. (author) Perceptions of potential donors in the Swedish public towards information and consent procedures in relation to use of human tissue samples in biobanks : a population-based study 2007 In: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 35:2, s. 148-156 Journal article (peer-reviewed)abstract Aims: To assess the Swedish public's preferences for information and consent procedures when being asked for permission to use previously collected tissue samples for new research studies. Methods: Cross-sectional study employing postal questionnaires to a random sample of the Swedish general public (n = 6,000) in October 2002-February 2003. The response rate was 49% (n = 2,928). This paper includes only respondents who reportedly would approve of samples being taken and stored (n = 2,122). Results: When potential tissue sample donors in the general public have to strike a balance between the values at stake, i.e. the autonomy of the donor versus the research value, most (72%) prefer general consent, i.e. where consent is asked for at the outset only. They want the research ethics committee (REC) alone to decide on the use of stored samples, and they would allow storage as long as the sample is useful for research. The minority of respondents who were in favour of specific consent were more likely to be young, well educated, have negative experiences of healthcare and low trust in healthcare authorities. Conclusions: The majority of the Swedish general public prefer general consent, and are thus willing to delegate some decisions to the RECs. However, preferences for information and consent procedures depend on the context, e.g. the risks for the donor and the purpose of the research. If feasible, procedures should be differentiated according to the preferences of individual donors, thus protecting the interests of both the minority and the majority.
27.	Kettis, Åsa, et al. (author) Placements : an underused vehicle for quality enhancement in higher education? 2013 In: Quality in Higher Education. - : Taylor & Francis Group. - 1353-8322 .- 1470-1081. ; 19:1, s. 28-40 Journal article (peer-reviewed)abstract Placements have the potential to contribute more effectively to the quality of higher education. The aim of this article is to discuss how placements can be made more worthwhile for individual students, while also contributing to the overall quality of teaching and learning at HEIs as well as to the development of workplace cultures that are conducive to learning. Work experience opportunities help students to build substantive relationships and apply what they are learning. Students’ overall view of their learning experience becomes more positive, their identification with their intended profession strengthens and academic performance improves, as do graduate employment rates. Introducing placements in the curriculum does not, however, guarantee these positive effects. Learning is likely to be greater if the experience is ‘intentional and recognised’ and tightly knit into the curriculum. Using evidence from research on workplace learning is one way to improve the quality of placements, as exemplified by a scholarly approach to the development of placements for pharmacy students at Uppsala University. HEIs’ interaction with employers through placements enriches both parties. Academics gain insights into practice which may inspire teaching on campus, e.g. by generating real life examples that trigger students’ motivation and by informing curriculum design. Practitioners supervising students on placements are often excellent educational development partners. Placements may also contribute to organisational development. Developing a reflective, deliberate approach to learning in the workplace may be as useful for the employees as for the students. Also, students may carry out projects of value to the employer, while also keeping the university informed of current practice. An increased engagement in students' work experience opportunities may improve the student experience, and contribute to bridging the academy-practice divide in a way that is as much about influencing the rest of society as being influenced by it.
28.	Kettis, Åsa, et al. (author) Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW : a randomized study 2021 In: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 5 Journal article (peer-reviewed)abstract Background: Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice.Methods: In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3-5 consultations over a period of 4-6 months. The primary outcome measure was patients' health-related QoL, as measured by FACIT-G. Patients' satisfaction with the consultation and survival were secondary outcomes.Results: There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded.Conclusions: Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.
29.	Kettis, Åsa, et al. (author) The role of dermatologists, nurses and pharmacists in chronic dermatological treatment: patient and provider views and experiences. 2006 In: Acta dermato-venereologica. - : Medical Journals Sweden AB. - 0001-5555 .- 1651-2057. ; 86:3, s. 202-8 Journal article (peer-reviewed)abstract Effectively co-ordinated treatment support from healthcare providers (doctors, nurses and pharmacists) may improve patients' adherence to treatment. The objective of this study was to identify patients' and providers' perceptions of the roles of different healthcare providers in dermatological treatment. Focus groups were used in two types of fora: patients with chronic dermatological diseases (n =2x6) and healthcare providers (n =2x6), including doctors, nurses and pharmacists working in dermatological care. Data were analysed according to the Consensual Qualitative Research approach. The respondents viewed the roles of the providers as complementary, but poorly co-ordinated. Treatment support is provided mainly by the nurse. During the doctor's appointment, diagnosis and treatment decisions are often prioritized, leaving limited time for treatment support. The pharmacist's provision of support is constrained by the lack of privacy and clinical history of individual patients. The most apparent "gap" in the chain of treatment support was between the pharmacist and the other providers. There was a wish for improved interprofessional collaboration to avoid giving conflicting advice. There is a need to improve interprofessional collaboration in dermatology, in order to optimize treatment support in clinical practice.
30.	Kjellgren, Karin I, 1950, et al. (author) To follow dermatological treatment regimens--patients' and providers' views. 2004 In: Acta dermato-venereologica. - : Medical Journals Sweden AB. - 0001-5555 .- 1651-2057. ; 84:6, s. 445-50 Journal article (peer-reviewed)abstract Adherence to long-term therapy for chronic illness is on average 50%. However, regarding adherence to dermatological treatment the existing literature is limited. The aim of the study was to acquire an understanding of issues associated with adherence to dermatological therapy. Focus group interviews were used in two types of fora: patients with chronic dermatological diseases and health care providers, including doctors, nurses and pharmacists working in dermatological care. Results reveal the providers' view of a suboptimal rate of adherence. According to both providers and patients, factors affecting adherence were patients' expectations and experiences of therapeutic effect, possibilities for the patient to take active part in treatment decisions, as well as mode of administration and type of medication. Suggested strategies for improvement are individualized patient education, continuous treatment support with assessment of medication-taking behaviour and enhanced communication skills among the providers.
31.	Knudsen, Markus Dines, et al. (author) Self-Reported Whole-Grain Intake and Plasma Alkylresorcinol Concentrations in Combination in Relation to the Incidence of Colorectal Cancer 2014 In: American Journal of Epidemiology. - : Oxford University Press. - 0002-9262 .- 1476-6256. ; 179:10, s. 1188-1196 Journal article (peer-reviewed)abstract Self-reported food frequency questionnaires (FFQs) have occasionally been used to investigate the association between whole-grain intake and the incidence of colorectal cancer, but the results from those studies have been inconsistent. We investigated this association using intakes of whole grains and whole-grain products measured via FFQs and plasma alkylresorcinol concentrations, a biomarker of whole-grain wheat and rye intake, both separately and in combination (Howe's score with ranks). We conducted a nested case-control study in a cohort from a research project on Nordic health and whole-grain consumption (HELGA, 1992-1998). Incidence rate ratios and 95% confidence intervals were calculated using conditional logistic regression. Plasma alkylresorcinol concentrations alone and Howe's score with ranks were inversely associated with the incidence of distal colon cancer when the highest quartile was compared with the lowest (for alkylresorcinol concentrations, incidence rate ratio = 0.34, 95% confidence interval: 0.13, 0.92; for Howe's score with ranks, incidence rate ratio = 0.35, 95% confidence interval: 0.15, 0.86). No association was observed between whole-grain intake and any colorectal cancer (colon, proximal, distal or rectum cancer) when using an FFQ as the measure/exposure variable for whole-grain intake. The results suggest that assessing whole-grain intake using a combination of FFQs and biomarkers slightly increases the precision in estimating the risk of colon or rectal cancer by reducing the impact of misclassification, thereby increasing the statistical power of the study.
32.	Krigsman, Kristin, et al. (author) Adherence to multiple drug therapies : Refill adherence to concomitant use of diabetes and asthma/COPD medication 2007 In: Pharmacoepidemiology and Drug Safety. - : Wiley. - 1053-8569 .- 1099-1557. ; 16:10, s. 1120-1128 Journal article (peer-reviewed)abstract PurposeTo investigate whether patients with drugs for two chronic diseases, type 2 diabetes and asthma/chronic obstructive pulmonary diseases (COPD), showed the same refill adherence pattern in relation to their drug treatments during a 3-year period.MethodsPatients 50 years and older who had been dispensed diabetes and asthma/COPD drugs in the county of Jämtland during 2001-2003 were included. The refill adherence was calculated based either on prescribed dosage or defined daily dose (DDD). A patient profile graph for each patient was constructed including the date of each dispensation and the time period covered by the dispensed drugs. For each patient, the dispensation pattern and the treatment persistency over time were determined.ResultsIn total, 56 patients were included in the study. Satisfactory refill adherence was found for 68% of the repeat prescriptions for diabetes drugs and for 42% of the repeat prescriptions for asthma/COPD drugs. About half (52%; 29/56) of the patients showed the same dispensation patterns for both diabetes and asthma/COPD drugs, and 86% (25/29) of these patients had a satisfactory refill adherence. However, there was no correlation or agreement regarding the dispensation patterns for diabetes and asthma/COPD drugs.ConclusionsPatients showed higher refill adherence for their diabetes drugs than their asthma/COPD drugs. Our hypothesis that patients with satisfactory refill adherence to antihyperglycaemic drugs would also have satisfactory refill adherence to asthma/COPD drugs, was not supported.
33.	Krigsman, Kristin, et al. (author) Refill adherence by the elderly for asthma/chronic obstructive pulmonary disease drugs dispensed over a 10-year period 2007 In: Journal of Clinical Pharmacy and Therapeutics. - : Hindawi Limited. - 0269-4727 .- 1365-2710. ; 32:6, s. 603-611 Journal article (peer-reviewed)abstract Objective: The objective was to survey prescription refill adherence for preventive asthma/chronic obstructive pulmonary disease (COPD) medication dispensed to patients 60 years and older over a 10-year period. Methods: A retrospective analysis was conducted based on a Swedish pharmacy record database in the county of Jämtland for the years 1994-2003. Satisfactory refill adherence was set as dispensed refills covering 80-120% of the prescribed treatment time for inhaled corticosteroids, combination products of adrenergics and steroids and anticholinergics. Results and discussion: Only 28% (n=160) of the repeat prescriptions for inhaled corticosteroids had been dispensed with a satisfactory refill adherence, 59% showed an undersupply and 12% showed an oversupply. There was no difference in refill adherence in relation to age and gender. However, during the 10-year study period repeat prescriptions being dispensed for 2-4 years showed higher satisfactory refill adherence than those being dispensed for <2 years. Conclusions: Our study shows that over half of the repeat prescriptions for inhaled corticosteroids dispensed to patients over 60 years showed an undersupply. Therefore, it is likely that elderly patients on long-term therapy have a non-optimal drug use of their preventive asthma/COPD medication
34.	Krigsman, Kristin, et al. (author) Refill adherence by the elderly for asthma/COPD drugs dispensed over a ten-year period Journal article (peer-reviewed)
35.	Krigsman, Kristin, et al. (author) Refill adherence for patients with asthma and COPD: comparison of a pharmacy record database with manually collected repeat prescriptions 2007 In: Pharmacoepidemiology and Drug Safety. - : Wiley. - 1053-8569 .- 1099-1557. ; 16:4, s. 441-448 Journal article (peer-reviewed)abstract PurposeTo compare refill adherence data based on two different methods of data capturing, that is, manually collected repeat prescriptions and a pharmacy record database.MethodsThe study comprised a comparison of adherence data from manually collected repeat prescriptions of asthma and chronic obstructive pulmonary disease (COPD) drugs with fixed dosages dispensed in 2002 and the corresponding data from a pharmacy record database. Data were collected in the county of Jämtland in Sweden. Refill adherence was calculated for the different collection methods.ResultsData from 285 manually collected repeat prescriptions for asthma/COPD drugs for 2002 showed that 35% of the prescribings had been satisfactory refilled, while 42% showed an undersupply and 23% an oversupply. The pharmacy record database had 490 prescribings for asthma/COPD drugs registered in 2002, 28% of these had a satisfactory refill adherence, while 43% showed an undersupply, and 29% an oversupply. Based on the database it could be shown that 11% of the individuals had used more than one repeat prescription of the same medicine during 2002. Based on the pharmacy record database for 1999-2002, it was shown that 29% of the prescribings had been satisfactory refilled whereas undersupply increased (53%) and oversupply decreased (18%) as compared to the 1-year data.ConclusionsRefill adherence determined from manually collected repeat prescriptions and from a pharmacy record database did not differ for a 1-year period. Four-year data might give a better overview of patients' refill adherence than 1-year data.
36.	Krigsman, Kristin, 1979- (author) Refill Adherence to Long-Term Drug Treatment with a Focus on Asthma/COPD Medication 2007 Doctoral thesis (other academic/artistic)abstract Most patients are non-adherent with their medication sometimes, i.e. that they do not always use their medicines as prescribed. This might result in both under- and overuse and can lead to therapy failure, resulting in both unnecessary suffering and high costs. Therefore, medication adherence should be as high as possible. The aims of this thesis were to investigate the refill adherence to long-term drug treatment, especially for patients with asthma and chronic obstructive pulmonary disease (COPD), and to study treatment gaps for patients with undersupply and drug costs for patients with oversupply. Further aims were to compare different methods for assessing refill adherence and analyse whether the same patient has the same refill adherence pattern to two different chronic drug treatments, i.e. diabetes and asthma/COPD. The thesis shows that satisfactory refill adherence (80-120% of the prescribed dose) was 57% for repeat prescriptions with long-term drug treatment; undersupply was 21% and oversupply 22%. Patients with undersupply were without drugs more than half of the prescribed treatment time and the median oversupply for 90-100 days dispensation interval was 28 days. Patients who were exempt from charges had significantly higher oversupply than non-exempt patients and that leads to unnecessary cost for society. The level of satisfactory refill adherence for repeat prescriptions dispensed for asthma/COPD was on average 30%. The same low level was displayed for the elderly, where undersupply was more common than oversupply. Assessments of refill adherence during a one-year period gave the same results irrespective of whether the repeat prescriptions were from an individual pharmacy record database or were manually collected at a pharmacy.Patients with concomitant use of diabetes and asthma/COPD drugs do not have the same dispensation pattern for both drug types. The introduction of patient profiles as a new approach to complement the calculated refill adherence needs to be further studied in larger and more divergent populations. In the future, the new national pharmacy record database in Sweden has opened up for larger studies and will be valuable when studying patterns of drug utilization.
37.	Moen, Janne, et al. (author) Factors associated with multiple medication use in different age groups 2009 In: The Annals of Pharmacotherapy. - 1060-0280 .- 1542-6270. ; 43:12, s. 1978-1985 Journal article (peer-reviewed)abstract BACKGROUND: Multiple medicine use among elderly persons is likely to be the result of treatment regimens developed over a long period of time. By learning more about how multiple medication use develops, the quality of prescribing may be improved across the adult lifespan. OBJECTIVE: To describe patterns of multiple medicine use in the general Swedish population and its association with sociodemographic, lifestyle, and health status factors. METHODS: Data from a cross-sectional population health survey collected during 2001-2005 from 2816 randomly selected Swedish residents (age 30-75 y; response rate 76%) were analyzed. Multiple medicine use was restricted to prescription drugs and defined as the 75th percentile; that is, the 25% of the study group using the highest number of drugs per individual. RESULTS: Seventy-one percent of the respondents used some kind of drug, 51.5% used one or more prescription drug, 38.4% used one or more over-the-counter (OTC) medication, and 8.3% used one or more herbal preparation. The cutoff amounts defining multiple medicine use were: 2 or more medications for 30- to 49-year-olds, 3 or more for 50- to 64-year-olds, and 5 or more for 65- to 75-year-olds. No association between use of multiple medicines and use of OTC drugs or herbal preparations was found. When drugs were classified into therapeutic subgroups, 76.3% of those aged 30-49 years, 97.9% of those aged 50-64 years, and 100% of those aged 65-75 years were taking a unique combination of drugs. Multivariate analyses showed that diabetes and poor self-rated health were associated with multiple medicine use in all age cohorts. Female sex and hypertension were associated with multiple medicine use among those aged 30-49 and 50-64 years, current smoking among those aged 50-64 years, and obesity among those aged 65-75 years. CONCLUSIONS: Multiple medicine use was associated with morbidity and poor self-rated health across all age groups. The vast majority of users of multiple drugs are taking a unique combination of medications.
38.	Moen, Janne, 1980-, et al. (author) GPs' perceptions of multiple-medicine use in older patients 2010 In: Journal of Evaluation In Clinical Practice. - : Wiley. - 1356-1294 .- 1365-2753. ; 16:1, s. 69-75 Journal article (peer-reviewed)abstract Rationale, aim and objective: Multiple-medicine use (polypharmacy) is a growing problem for older patients, prescribers and health policy makers. The general practitioner (GP) is most often the main professional care provider; hence, improvements of treatment can only be carried out in concordance with GPs. The aim of this study was, therefore, to explore using a qualitative approach GPs' perspectives of treating older users of multiple medicines. Method: Six focus groups, with four private GPs and 27 county-employed GPs, were analysed by using the framework method. Results: In contrast to definitions in most epidemiologic studies, the GPs gave a spontaneous definition of polypharmacy as 'the administration of more medicines than are clinically indicated'. They had problems stating both a cut-off number and which medicines should be included. Clinical practice guidelines were thought of as 'medicine generators', having an ambiguous effect on the GPs, who both trust them and find them difficult to apply. There was a perceived lack of communication between GPs and hospital specialists concerning their patients' medicines, which was further perceived to reduce treatment quality. The influence of patient pressure was acknowledged by the GPs as a factor contributing to the development of multiple-medicine use. Conclusions: The GPs felt insecure although surrounded by clinical practice guidelines. There is a need for policy makers to appreciate this paradox, as the problem is likely to grow in size and proportion. GPs must be empowered to handle the increasing proportion of older users of multiple medicines with individual agendas, receiving care from multiple specialists.
39.	Moen, Janne, 1980-, et al. (author) "I don't know how many of these [medicines] are necessary.." - a focus group study among elderly users of multiple medicines 2009 In: Patient Education and Counseling. - : Elsevier BV. - 0738-3991 .- 1873-5134. ; 74:2, s. 135-141 Journal article (peer-reviewed)abstract OBJECTIVE: The growing prevalence of multiple medicine use among elderly challenges health care. The aim was to conduct an exploratory study describing multiple medicine use from the elderly patient's perspective. METHODS: Twelve focus groups of 29 men and 30 women 65 years of age or older, using five or more medicines were analysed qualitatively. RESULTS: Initially the participants reported no problems with using multiple medicines; they felt fortunate that medicines existed and kept them alive. However, negative attitudes were also revealed, both similar to those presented in studies on lay experience of medicine-taking and some that appear more specific to users of multiple medicines. The foremost of these was that acceptance of medicines depends on not experiencing adverse effects and worrying whether multiple medicine use is 'good' for the body. Furthermore, participants' perception of their medicines depended on interaction with doctors, i.e. trusting 'good' doctors. CONCLUSION: The participants revealed co-existing accounts of both immediate gratitude and problems with using multiple medicines. Furthermore, the patient-doctor relationship coloured their attitudes towards their medicines. PRACTICE IMPLICATIONS: Importance of the patient-doctor relationship for treatment success is highlighted. Moreover, to be able to capture both accounts of the elderly in this study an appropriate consultation length is needed.
40.	Moen, Janne, 1980-, et al. (author) Interaction Between Participants in Focus Groups With Older Patients and General Practitioners 2010 In: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 20:5, s. 607-616 Journal article (peer-reviewed)abstract Group interaction is put forward as the principal advantage for focus group research although rarely reported on. The aim of this paper is to contribute to the methodological knowledge regarding focus group research by providing an empirical example of the application of the Lehoux, Poland and Daudelin template suggested for analysis of the interaction in focus groups. The data source was 18 focus groups' performance in Sweden; 12 with older participants and 6 with general practitioners (GPs). GPs found a common ground in belonging to the same profession, while older participants instead of constituting a group in the words real sense started just sharing a common focus. We found the template easy to understand and use, except for identifying participants' explicit and implicit purposes for participating. Further, adding an interaction analysis to the content analysis helped us appreciate and clarify the contexts from which these data were created.
41.	Moen, Janne, 1980- (author) Multiple Medicine Use : Patients’ and general practitioners’ perceptions and patterns of use in relation to age and other patient characteristics 2009 Doctoral thesis (other academic/artistic)abstract There are widespread concerns about the increasing use of multiple medicines. The aims of this thesis were to identify older patients' and general practitioners' (GPs) attitudes to and experiences of multiple medicine use, as well as to describe patterns of multiple medicine use in different age groups in association with patient-related factors. An additional aim was to contribute to scientific methodological development by providing an empirical example of the application of the Lehoux, Poland, & Daudelin template for the analysis of interaction in focus groups. Data were collected via qualitative focus group discussions and from a cross-sectional community-based population survey conducted during 2001-2005. The patients revealed co-existing accounts of both immediate gratitude that medicines exist and problems with using multiple medicines such as worrying whether multiple medicine use is 'good' for the body. The patient-doctor relationship coloured their attitudes towards their treatment and care. The GPs at times felt insecure, though surrounded by treatment guidelines. Lack of communication with hospital specialists was perceived to reduce treatment quality, while influence of patient pressure was thought to contribute to the development of multiple medicine use. An interaction analysis helped in appreciating and clarifying the contexts in which results from the content analysis were created. Further discussion is needed on how to best report these results. Different cut-offs are useful in defining multiple medicine use in different age groups. Vast majorities of users of multiple medicines were found to have unique medicine combinations. Multiple medicine use was found to be associated with morbidity and poor self-rated health across all age groups.
42.	Moen, Janne, 1980-, et al. (author) Multiple medicine use: factors of importance in different age groups Other publication (other academic/artistic)abstract BACKGROUND: Multiple medicine use among elderly persons is likely to be the result of treatment regimens developed over a long time. By learning more about this development, it might be possible to increase quality in management of multiple medicine use across the adult lifespan. OBJECTIVE: To describe patterns of multiple medicine use in a general population in association with sociodemographic factors, lifestyle, and health status. METHODS: Data from a cross-sectional population health survey collected during 2001-2005 in 2,816 randomly selected Swedish residents (age 30-75 years; response rate 76%). Multiple medicine use was defined as the upper quartile in each age cohort. RESULTS: The cut-offs defining multiple medicine use were: ≥2 for 30-49 year olds, ≥3 for 50-64 year olds, and ≥5 for 65-75 year olds. When drugs were classified into the second level of the ATC code, 76.3% of the 30-49 year olds, 97.9% of the 50-64 year olds, and 100% of the 65-75 year olds used a unique combination of drugs. The multivariate analyses showed that diabetes and poor self-rated health were associated with multiple medicine use in all age cohorts. Female gender and hypertension were associated with multiple medicine use among 30-49 and 50-64 year olds, ex-smoking among 50-64 year olds, and obesity among 65-75 year olds. CONCLUSIONS: Different cut-offs should be used in defining multiple medicine use in different age groups. A vast majority of users of multiple medicines have a unique drug combination. Multiple medicine use is associated with morbidity and poor self-rated health across all age groups, suggesting that multiple medicine use is not due to drug over-consumption.
43.	Moore, Margaret, et al. (author) Can the concepts of depression and quality of life be integrated using a time perspective? 2005 In: Health and Quality of Life Outcomes. - 1477-7525. ; 3:1, s. 1- Journal article (peer-reviewed)
44.	Nordén-Hägg, Annika, et al. (author) Assessing safety culture in pharmacies : the psychometric validation of the Safety Attitudes Questionnaire (SAQ) in a national sample of community pharmacies in Sweden 2010 In: BMC clinical pharmacology. - : Springer Science and Business Media LLC. - 1472-6904. ; 10, s. 8- Journal article (peer-reviewed)abstract The Swedish translation of the SAQ demonstrates acceptable construct validity, for capturing the frontline perspective of safety culture of community pharmacy staff. The psychometric results reported here met or exceeded standard guidelines, which is consistent with previous studies using the SAQ in other healthcare settings and other languages.
45.	Nordén-Hägg, Annika, et al. (author) Experiences of a nationwide web-based system : reporting dispensing errors in Swedish pharmacies 2012 In: International Journal of Pharmacy Practice. - : Oxford University Press (OUP). - 2042-7174 .- 0961-7671. ; 20:1, s. 25-32 Journal article (peer-reviewed)abstract OBJECTIVES: To design and evaluate a national web-based dispensing error reporting system for all Swedish pharmacies, replacing the currently used paper-based system.METHODS: A working group designed the new system. The number of reports before (1999-2003) and after (2004-2005) introduction was studied in a descriptive analysis. The completeness of reports was evaluated through the study of 100 randomly selected reports from the third quarter of 2003 and 2004 from each system. Evaluation was done by chi-square analysis; P>0.05. Perceptions on introduction were collected in semi-structured interviews (working group and one assistant) and subjected to descriptive analysis.KEY FINDINGS: Reported error rate per 100,000 dispensed items was 12.9 pre- and 21.4 post implementation. Completeness-analysis revealed that information was more comprehensively reported in the new system. A significant difference existed in the extent to which incidents were described as well as details provided of the medicine and the patient. According to the interviewees, users initially found the web-based system difficult to handle. It took more than 6 months to change this perception.CONCLUSIONS: Introducing a web-based system for reporting dispensing errors had an impact on quantity of reports and completeness. Time and patience was needed to implement the changes.
46.	Nordén-Hägg, Annika, et al. (author) Reducing dispensing errors in Swedish pharmacies : the impact of a barrier in the computer system 2010 In: Quality and Safety in Healthcare. - : BMJ. - 1475-3898 .- 1470-7934. ; 19:6, s. e22- Journal article (peer-reviewed)abstract BACKGROUND: Since 2004, a web-based reporting system enables monitoring of dispensing errors in all Swedish pharmacies. The adoption of this system was followed by an overall increase in reports, mainly explained by the dispensing of medicines of improper strength. In 2006 an intervention was implemented, aimed at reducing these errors. The objective of this study was to assess the impact of the intervention on the number of errors. METHODS: Monthly data on the reported number of dispensing errors from July 2004 until December 2007 were used. These were analysed in total and subdivided by type and cause of error. A time-series design was applied, and linear segmented regression analysis used to analyse whether changes in slope or level occurred; shifts in intercept or slope where p<0.01 were considered as statistically significant. RESULTS: The intervention coincided with a distinct decrease in error reports and a statistically significant change in slope that switched from a slight increase, 0.09, to a decrease, -0.26 (p = 0.0035). Medicines dispensed with wrong strength also displayed a significant change in slope, from 0.08 to -0.27 (p<0.0001), as well as dispensing errors caused by registration failure, that is, failure of the registration of a prescription in pharmacy computers, which changed from 0.05 to -0.29 (p<0.0001). CONCLUSION: The intervention was associated with a decrease in the number of reports on drugs dispensed with the wrong strength, but also had a decreasing effect on errors caused by registration failure and on the dispensing errors in total as well.
47.	Patrick, Donald L., et al. (author) Content Validity - Establishing and Reporting the Evidence in Newly Developed Patient-Reported Outcomes (PRO) Instruments for Medical Product Evaluation : ISPOR PRO Good Research Practices Task Force Report: Part 2 - Assessing Respondent Understanding 2011 In: Value in Health. - : Elsevier BV. - 1098-3015 .- 1524-4733. ; 14:8, s. 978-988 Journal article (peer-reviewed)abstract The importance of content validity in developing patient reported outcomes (PRO) instruments is stressed by both the US Food and Drug Administration and the European Medicines Agency. Content validity is the extent to which an instrument measures the important aspects of concepts developers or users purport it to assess. A PRO instrument measures the concepts most relevant and important to a patient's condition and its treatment. For PRO instruments, items and domains as reflected in the scores of an instrument should be important to the target population and comprehensive with respect to patient concerns. Documentation of target population input in item generation, as well as evaluation of patient understanding through cognitive interviewing, can provide the evidence for content validity. Part 1 of this task force report covers elicitation of key concepts using qualitative focus groups and/or interviews to inform content and structure of a new PRO instrument. Building on qualitative interviews and focus groups used to elicit concepts, cognitive interviews help developers craft items that can be understood by respondents in the target population and can ultimately confirm that the final instrument is appropriate, comprehensive, and understandable in the target population. Part 2 details: 1) the methods for conducting cognitive interviews that address patient understanding of items, instructions, and response options; and 2) the methods for tracking item development through the various stages of research and preparing this tracking for submission to regulatory agencies. The task force report's two parts are meant to be read together. They are intended to offer suggestions for good practice in planning, executing, and documenting qualitative studies that are used to support the content validity of PRO instruments to be used in medical product evaluation.
48.	Patrick, Donald L., et al. (author) Content Validity - Establishing and Reporting the Evidence in Newly Developed Patient-Reported Outcomes (PRO) Instruments for Medical Product Evaluation : ISPOR PRO Good Research Practices Task Force Report: Part 1 - Eliciting Concepts for a New PRO Instrument 2011 In: Value in Health. - : Elsevier BV. - 1098-3015 .- 1524-4733. ; 14:8, s. 967-977 Journal article (peer-reviewed)abstract The importance of content validity in developing patient reported outcomes (PRO) instruments is stressed by both the US Food and Drug Administration and the European Medicines Agency. Content validity is the extent to which an instrument measures the important aspects of concepts that developers or users purport it to assess. A PRO instrument measures the concepts most significant and relevant to a patient's condition and its treatment. For PRO instruments, items and domains as reflected in the scores of an instrument should be important to the target population and comprehensive with respect to patient concerns. Documentation of target population input in item generation, as well as evaluation of patient understanding through cognitive interviewing, can provide the evidence for content validity. Developing content for, and assessing respondent understanding of, newly developed PRO instruments for medical product evaluation will be discussed in this two-part ISPOR PRO Good Research Practices Task Force Report. Topics include the methods for generating items, documenting item development, coding of qualitative data from item generation, cognitive interviewing, and tracking item development through the various stages of research and preparing this tracking for submission to regulatory agencies. Part 1 covers elicitation of key concepts using qualitative focus groups and/or interviews to inform content and structure of a new PRO instrument. Part 2 covers the instrument development process, the assessment of patient understanding of the draft instrument using cognitive interviews and steps for instrument revision. The two parts are meant to be read together. They are intended to offer suggestions for good practices in planning, executing, and documenting qualitative studies that are used to support the content validity of PRO instruments to be used in medical product evaluation.
49.	Ring, Lena, et al. (author) Feasibility and validity of a computer administered version of SEIQoL-DW 2006 In: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 15:7, s. 1173-1177 Journal article (peer-reviewed)abstract Computer administrered QoL instruments are increasingly used to assess outcomes. Our aim was to assess the feasibility and validity of an electronic version of the SEIQoL-DW. Pharmacy students (n = 40; mean age 25; 92% women) were administrated both the touch screen and the paper-and-pen versions in a cross-over study. The majority of the students (65 %) preferred the computer version, while almost a third (27%) preferred the paper and pen version. There was no overall order effect and the SEOQoL-DW index mean scores differed with 1.2 between the two versions. Those respondents completing the computer version first had higher scores than those completing the computer version second. The ICC comparing the formats was 0.77 (CI: 0.57-0.88) and the limits of agreement method showed that 85% of the observations were within +/- 1-10 units. Most students (82%) judged their QoL as being equivalent to their SEIQoL-DW score. The computer version of the SEIQoL-DW seems to be feasible and acceptable and seems to be valid alternative to the paper and pen version. However, further validation studies in larger patient populations are needed.
50.	Ring, Lena, et al. (author) Individual quality of life : can it be accounted for by psychological or subjective well-being? 2007 In: Social Indicators Research. - : Springer Science and Business Media LLC. - 0303-8300 .- 1573-0921. ; 82:3, s. 443-461 Journal article (peer-reviewed)abstract There is ongoing discussion in the scientific literature about the need for a more theoretical foundation to underpin quality of life (QoL) measurement. This paper applied Keyes et al.'s [J. Pers. Soc. Psychol. 82 (2002) 1007] model of well-being as a framework to assess whether respondents (n = 136 students) focus on elements of subjective well-being (SWB), such as satisfaction and happiness, or on elements of psychological well-being (PWB), such as meaning and personal growth, when making individual QoL (IQoL) judgments using the Schedue of the Evaluation of Individual Quality of Life (SEIQoL). The Keyes et al.'s model was confirmed and explained 41% of the variance in SEIQoL scores. Both SWB and PWB were correlated with the SEIQoL Index Score and SWB was found to be an important mediating variable in the relationship between PWB and SEIQoL. When analyzing different well-being combinations, respondents with high SWB/high PWB had significantly higher SEIQoL scores than did those with low SWB/low PWB. Respondents with high PWB/high SWB had higher SEIQoL scores than did those with high PWB/low SWB. Longitudinal studies in different patient groups are needed to explore the dynamic relationship between IQoL and well-being. Further investigation of the relationship between PWB and SWB with other instruments purporting to measure QoL would contribute to an enhanced understanding of the underlying nature of QoL.

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