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.

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.

Barriers against psychosocial communication: oncologists' perceptions.

PURPOSE: To explore oncologists' psychosocial attitudes and beliefs and their perceptions regarding barriers against psychosocial communication. METHODS: A questionnaire was distributed to oncologists in Sweden (n = 537). Questions covered demography, the Physician Psychosocial Beliefs Scale (PPBS), and barriers against psychosocial communication. Stepwise multiple regression was used to determine what factors contribute the most to the PPBS score and the total number of barriers and barriers affecting clinical practice, respectively. Spearman rank-order correlation was used to determine correlation between PPBS score and number of barriers. RESULTS: Questionnaire response rate was 64%. Mean PPBS value was 85.5 (range, 49 to 123; SD, 13.0). Most oncologists (93%) perceived one or more barriers in communicating psychosocial aspects with patients. On average, five different communication barriers were perceived, of which most were perceived to affect clinical practice. These barriers included insufficient consultation time, lack of resources for taking care of problems discovered, and lack of methods to evaluate patients' psychosocial health in clinical practice. There was a positive correlation (rs = 0.490; P < .001) between the PPBS score and the number of perceived barriers (ie, less psychosocially oriented oncologists perceived more barriers). Oncologists with supplementary education with a psychosocial focus perceived fewer barriers/barriers affecting clinical practice (P < .001 and P = .001, respectively) and were more psychosocially oriented (P = .001). CONCLUSION: Oncologists perceive many different barriers affecting psychosocial communication in clinical practice. Interventions aiming to improve psychosocial communication must therefore be multifaceted and individualized to clinics and individual oncologists. It is important to minimize barriers to facilitate optimal care and treatment of patients with cancer.

Transfer of data or re-creation of knowledge - experiences of a shared electronic patient medical records system.

BACKGROUND: A shared electronic medical record (EMR) can improve communication between primary and secondary care. A consideration of the contents using Data-Information-Knowledge-Wisdom (DIKW) hierarchy could help inform further development of such systems regarding communication about prescribed medication. OBJECTIVES: To investigate primary and secondary care doctors' experiences of the shared EMR in Uppsala, Sweden, focusing on the creation, use and cross-sector transfer of data, information, knowledge and wisdom about individual patients' prescribed medication. METHOD: Nine focus groups were held with hospital doctors, of different grades and medical specialties, working at a single large teaching hospital in Uppsala, Sweden and primary care doctors worked in the same geographical area, in urban and rural primary care centers. The transcribed data were analyzed used the constant comparative method, based on data from the participants and application of the DIKW hierarchy. RESULTS: The doctors were very positive about accessing and using the shared EMR. Data and information in the system were efficiently retrieved and combined with newly collected data and information to create further knowledge. However, they also described a data and information overload, where it was difficult to get a general overview of what had happened over time, coupled with the frequent lack of knowledge being created and shared by other healthcare providers. Doctors were, instead, either explicitly asked or implicitly expected to read and interpret all available data and information and recreate knowledge themselves. CONCLUSIONS: This study highlighted the differences between access to data and information and access to knowledge in a shared EMR. In rolling out such a system, an increased availability of data and information should not be at the expense of a reduced availability of knowledge.

Complementary or alternative? Patterns of complementary and alternative medicine (CAM) use among Finnish children.

PURPOSE: The aim of this study was to measure patterns of complementary and alternative medicine (CAM) use among Finnish children and to explore whether CAM use among children is mainly complementary or alternative. METHODS: We carried out a cross-sectional population-based survey in spring 2007. The study population consisted of a representative sample (n = 6,000) of Finnish children under 12 years of age. A questionnaire was sent to their parents, and 4,032 questionnaires were returned (response rate 67 %). Pearson's chi-square test and logistic regression analysis were conducted to measure factors associated with CAM use. RESULTS: The prevalence of CAM use among children was 11 %. Fish oils and fatty acids (6 %) followed by probiotics (4 %) were the most commonly reported CAMs used. Being the first born, using vitamins and having at least one symptom predicted the use of CAMs. Parental use of vitamins and CAMs were also associated with CAM use among children. In the preceding 2 days, 3 % of children in the study had used only CAMs, and 7 % had used a CAM concomitantly with prescribed and/or over-the-counter medicines. CONCLUSIONS: Our results indicate that the use of CAMs among Finnish children is mainly for improving health and alleviating symptoms, especially in families where at least one parent also uses these modalities. CAMs were mainly used as complementary rather than as an alternative to conventional care. Healthcare professionals should be aware of this complementary use of CAMs and medicines in patients to avoid risks of potential interactions.

Different perspectives on communication quality and emotional functioning during routine oncology consultations.

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.