"It's about how you take in things with your brain" - young people's perspectives on mental health and help seeking: an interview study.

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.

International Society for Quality of Life Research commentary on the draft European Medicines Agency reflection paper on the use of patient-reported outcome (PRO) measures in oncology studies.

In 2014, the European Medicines Agency (EMA) released for comment a draft reflection paper on the use of patient-reported outcome (PRO) measures in oncology studies. A twelve-member International Society for Quality of Life Research (ISOQOL) taskforce was convened to coordinate the ISOQOL response. Twenty-one ISOQOL members provided detailed comments and suggestions on the paper: 81 % from academia and 19 % from industry. Taskforce members consolidated and further refined these comments and shared the recommendations with the wider ISOQOL membership. A final response was submitted to the EMA in November 2014. The impending publication of the EMA reflection paper presents a valuable opportunity for ISOQOL to comment on the current direction of EMA PRO guidance and strategy. The EMA paper, although focused on cancer, could serve as a model for using PROs in other conditions, as it provides a useful update surrounding some of the design issues common to all trial research including PRO endpoints. However, we believe there are a number of additional areas in need of greater consideration. The purpose of this commentary is therefore to highlight the strengths of this timely and potentially useful document, but also to outline areas that may warrant further discussion.

Comparison of two instruments for measurement of quality of life in clinical practice--a qualitative study.

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.

Developing an interactive mobile phone self-report system for self-management of hypertension. Part 1: patient and professional perspectives.

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.

Developing an interactive mobile phone self-report system for self-management of hypertension. Part 2: content validity and usability.

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-specific 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.

Communication analysis in oncology care. Performance of a combination of a content analysis system and a global scale.

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.

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.

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.

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.

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.

Comparing two versions of the Schedule for Evaluation of Individual Quality of Life in patients with advanced cancer.

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.

Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study.

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.

Assessing safety culture in pharmacies: the psychometric validation of the Safety Attitudes Questionnaire (SAQ) in a national sample of community pharmacies in Sweden.

BACKGROUND: Safety culture assessment is increasingly recognized as an important component in healthcare quality improvement, also in pharmacies. One of the most commonly used and rigorously validated tools to measure safety culture is the Safety Attitudes Questionnaire; SAQ. This study presents the validation of the SAQ for use in Swedish pharmacies. The psychometric properties of the translated questionnaire are presented METHODS: The original English language version of the SAQ was translated and adapted to the Swedish context and distributed by e-mail. The survey was carried out on a national basis, covering all 870 Swedish community pharmacies. In total, 7,244 questionnaires were distributed. Scale psychometrics were analysed using Cronbach alphas and intercorrelations among the scales. Multiple group confirmatory factor analysis (CFA) was conducted. RESULTS: SAQ data from 828 community pharmacies in Sweden, including 4,090 (60.22%) pharmacy personnel out of 6,683 eligible respondents, were received. There were 252 (28.97%) pharmacies that met the inclusion criteria of having at least 5 respondents and a minimum response rate of 60% within that pharmacy.The coefficient alpha value for each of the SAQ scales ranged from .72 to .89. The internal consistency results, in conjunction with the confirmatory factor analysis results, demonstrate that the Swedish translation of the SAQ has acceptable to good psychometric properties. Perceptions of the pharmacy (Teamwork Climate, Job Satisfaction, Perceptions of Management, Safety Climate, and Working Conditions) were moderately to highly correlated with one another whereas attitudes about stress (Stress Recognition) had only low correlations with other factors. Perceptions of management showed the most variability across pharmacies (SD = 26.66), whereas Stress Recognition showed the least (SD = 18.58). There was substantial variability ranging from 0% to 100% in the percent of positive scores for each of the factors across the 252 pharmacies. CONCLUSIONS: 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.

Interaction between participants in focus groups with older patients and general practitioners.

Group interaction is put forward as the principal advantage for focus group research, although rarely reported on. The aim of the article 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 patients and 6 with general practitioners (GPs). GPs found common ground in belonging to the same profession, whereas the older patients, instead of constituting a group in the word's 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. Furthermore, adding an interaction analysis to the content analysis helped us appreciate and clarify the contexts from which these data were created.

Pretend Play as an Intervention for Children With Cancer: A Feasibility Study.

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.

Factors associated with multiple medication use in different age groups.

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.

"I don't know how many of these [medicines] are necessary.." - a focus group study among elderly users of multiple medicines.

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.

The utility/futility of medications for neuropathic pain - an observational study.

Background and aims The 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. Methods Subjects 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. Results RELIEF 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. Conclusions Since 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. Implications We 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.

Patient-physician communication during oncology consultations.

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.

Patients'and doctors' views of using the schedule for individual quality of life in clinical practice.

This study explored patients' and oncologists' perceptions of using a computer-administered, individualized quality-of-life (QOL) instrument to support an oncologic consultation. Twenty patients with gastrointestinal cancer (50% female; mean age 60 years) at two hospitals in Sweden completed the Schedule for the Evaluation of Individual Quality of Life-Direct Weight (SEIQoL-DW) and the Disease-Related (DR) SEIQoL-DW and brought the results to the consultation. Afterwards, interviews were conducted with all patients and six of eight doctors. All interviews were audiotaped, transcribed, and analyzed using an interpretivist approach. Most patients and doctors believed that the instrument would facilitate detection of patients' areas of concern and would support monitoring of patients' QOL. This tool may empower the patient, give the doctor a broader picture of the patient, and influence clinical decision-making. The SEIQoL-DW may be a systematic method of stimulating patient-centered care. It apparently encourages patients to reflect upon their own situation and allows them to be seen as whole persons. However, further quantitative evaluation of the intervention's outcomes is required.

Living with skin diseases and topical treatment: patients' and providers' perspectives and priorities.

OBJECTIVES: Relationship-centred care stresses the importance of taking both patients' and health-care providers' values, expectations and preferences into account to improve health outcomes. The aim of this qualitative study was to identify patients' and providers' views and experiences of skin disease and topical treatment. METHODS: Two types of focus group were used: (i) patients with chronic dermatological diseases and (ii) doctors, nurses and pharmacists working in dermatological care. RESULTS: Three major categories emerged: (i) problems related to the disease, (ii) problems related to the treatment and (iii) strategies for improving everyday life for patients. CONCLUSION: Patients and providers made several suggestions for improving everyday life. Future research needs to focus on how to achieve preference-matched shared decision-making, or concordance, between patients and health-care providers, taking different perspectives into account and how to evaluate the effect of the final, clinical, economical and humanistic outcomes of care and treatment. More seamless care and an increasingly shared understanding between patients and providers of their values, expectations and preferences for care and treatment may contribute to better health and better daily lives for patients.

Can the concepts of depression and quality of life be integrated using a time perspective?

BACKGROUND: Little is understood about the conceptual relationship of depression and quality of life (QoL). Judgments concerning both, implicitly or explicitly, involve a time perspective. The aim of this study was to test de Leval's theoretical model linking depression and QoL with a time perspective. The model predicts that changes in cognitions about one's past, present and future QoL, will be associated with changes in depressive symptomatology. METHODS: Eighteen psychiatric in-patients with a clinically confirmed diagnosis of depression were assessed on commencing treatment and 12 weeks later. QoL was assessed by the Schedule for Evaluation of Individual Quality of Life (SEIQoL), depression by the Beck Depression Inventory (BDI-II) and hopelessness by the Beck Hopelessness Scale (BHS). Time perspective was incorporated by asking QoL questions about the past, present and future. RESULTS: Depression and hopelessness were associated with a poorer present QoL. Depression lowered present QoL but did not alter future QoL, as these remained consistently high whether participants were depressed or recovering. However, depressed individuals had a larger gap between their actual present QoL and future (aspired to) QoL. Changes in QoL were influenced by depression and hopelessness. Contrary to the model, perception of "past" QoL was not affected by depression or hopelessness. CONCLUSIONS: de Leval's model was largely confirmed. Thus depression and hopelessness influence a person's present and future QoL. The analysis of a temporal horizon was helpful in understanding the link between depression and QoL.