Information and support to patients when the waiting time guarantee cannot be fulfilled: a qualitative study.

BACKGROUND: Long waiting times for health care services are a prominent health policy issue. Waiting time guarantees may limit time to assessment and treatment. METHODS: This study aims to investigate the information and support given to patients when the waiting time guarantee cannot be fulfilled from a care provider and administrative management perspective. Semi-structured interviews (N = 28) were conducted with administrative management and care providers (clinic staff and clinic line managers) in specialized clinics in the Stockholm Region, Sweden. Clinics were purposefully sampled for maximum variation in ownership (private, public), complexity of care, geographical location, volume of production, and waiting times. Thematic analysis was applied. RESULTS: Care providers reported that patients received inconsistent information and support with regard to the waiting time guarantee and that information was not adapted to health literacy or individual patient needs. Contrary to local law, they made some patients responsible for finding a new care provider or arranging a new referral. Furthermore, financial interests affected whether patients were referred to other providers. Administrative management steered care providers' informing practices at specific time points (upon establishment of a new unit and after six months of operation). A specific regional support function, Region Stockholm's Care Guarantee Office, helped patients change care providers when long waiting times occurred. However, administrative management perceived that there was no established routine to assist care providers in informing patients. CONCLUSIONS: Care providers did not consider patients' health literacy when informing them about the waiting time guarantee. Administrative management's attempts to provide information and support to care providers are not producing the results they expect. Soft-law regulations and care contracts seem insufficient, and economic mechanisms undermine care providers' willingness to inform patients. The described actions are unable to mitigate the inequality in health care that arises from differences in care-seeking behavior.

Characterization of data-driven clusters in diabetes-free adults and their utility for risk stratification of type 2 diabetes.

BACKGROUND: The prevention of type 2 diabetes is challenging due to the variable effects of risk factors at an individual level. Data-driven methods could be useful to detect more homogeneous groups based on risk factor variability. The aim of this study was to derive characteristic phenotypes using cluster analysis of common risk factors and to assess their utility to stratify the risk of type 2 diabetes. METHODS: Data on 7317 diabetes-free adults from Sweden were used in the main analysis and on 2332 diabetes-free adults from Mexico for external validation. Clusters were based on sex, family history of diabetes, educational attainment, fasting blood glucose and insulin levels, estimated insulin resistance and ß-cell function, systolic and diastolic blood pressure, and BMI. The risk of type 2 diabetes was assessed using Cox proportional hazards models. The predictive accuracy and long-term stability of the clusters were then compared to different definitions of prediabetes. RESULTS: Six risk phenotypes were identified independently in both cohorts: very low-risk (VLR), low-risk low ß-cell function (LRLB), low-risk high ß-cell function (LRHB), high-risk high blood pressure (HRHBP), high-risk ß-cell failure (HRBF), and high-risk insulin-resistant (HRIR). Compared to the LRHB cluster, the VLR and LRLB clusters showed a lower risk, while the HRHBP, HRBF, and HRIR clusters showed a higher risk of developing type 2 diabetes. The high-risk clusters, as a group, had a better predictive accuracy than prediabetes and adequate stability after 20 years. CONCLUSIONS: Phenotypes derived using cluster analysis were useful in stratifying the risk of type 2 diabetes among diabetes-free adults in two independent cohorts. These results could be used to develop more precise public health interventions.

Challenges to ensuring valid and useful waiting time monitoring - a qualitative study in Swedish specialist care.

BACKGROUND: Access to health care is an essential health policy issue. In several countries, waiting time guarantees mandate set time limits for assessment and treatment. High-quality waiting time data are necessary to evaluate and improve waiting times. This study's aim was to investigate health care providers and administrative management professionals' perceptions of validity and usefulness of waiting time reporting in specialist care. METHODS: Semi-structured interviews (n = 28) were conducted with administrative management and care professionals (line managers and care providers) in specialized clinics in the Stockholm Region, Sweden. Clinic-specific data from the waiting time registry was used in the care provider interviews to assess face validity. Clinics were purposefully sampled for maximum variation in complexity of care, volume of production, geographical location, private or public ownership, and local waiting times. Thematic analysis was used. RESULTS: The waiting time registry was perceived to have low validity and usefulness. Perceived validity and usefulness were interconnected, with mechanisms that reinforced the connection. Structural and cognitive barriers to validity included technical and procedural errors, errors caused by role division, misinterpretation of guidelines, diverging interpretations of nonregulated cases and extensive willful manipulation of data. CONCLUSIONS: We identify four misconceptions underpinning the current waiting time reporting system: passive dissemination of guidelines is sufficient as implemented, cognitive load of care providers to report waiting times is negligible, soft-law regulation and presentation of outcome data is sufficient to drive improvement, and self-reported data linked to incentives poses a low risk of data corruption. To counter low validity and usefulness, we propose the following for policy makers and administrative management when developing and implementing waiting time monitoring: communicate guidelines with instructions for operationalization, address barriers to implementation, ensure quality through monitoring of implementation and adherence to guidelines, develop IT ontology together with professionals, avoid parallel measurement infrastructures, ensure waiting times are presented to suit management needs, provide timely waiting time data, enable the study of single cases, minimize manual data entry, and perform spot-checks or external validity checks. Several of these strategies should be transferable to waiting time monitoring in other contexts.

Persons with rheumatoid arthritis challenge the relevance of the health assessment questionnaire: a qualitative study of patient perception.

BACKGROUND: The Stanford Health Assessment Questionnaire-Disability Index (HAQ) is widely used to measure functional ability in persons with Rheumatoid Arthritis (RA). The instrument was developed with limited involvement from persons with RA, and their perception of the instrument has not been studied in depth. The aim of this study was to explore how persons with RA experience the use of the HAQ in care. METHODS: The study used secondary data analysis. Persons with RA participated in semi-structured interviews in previous research projects. Thirty-nine interviews were included based on data fit, and thematic analysis applied. RESULTS: The participants questioned the relevance of the HAQ but nevertheless experienced that the instrument had a profound effect on their understanding of health and how care is delivered. The analysis resulted in three themes: Problems with individual items, meaning of the summative score, and effects on care and health perceptions. CONCLUSIONS: To make the HAQ relevant to persons with RA, it needs to be revised or to include an option to select items most meaningful to the respondent. To ensure relevance, the HAQ update should preferably be co-created by researchers, clinicians and persons with RA.

Value-Based Health Care for Chronic Care: Aligning Outcomes Measurement with the Patient Perspective.

BACKGROUND: Value-based health care is increasingly used for developing health care services by relating patient outcomes to costs. A hierarchical value scorecard for creating outcome measurements has been suggested: the 3-tier model. The objective of this study was to test the model against the patient's view of value in a chronic care setting. METHODS: Semistructured interviews with 22 persons with rheumatoid arthritis were conducted, transcribed, and analyzed using qualitative content analysis. Themes were extracted, and the model was critically applied and revised. RESULTS: The study validates existing dimensions in the model but suggests adding information, social health, predictability, and continuity to make it more useful and representative of patients' preferences. CONCLUSION: Although the model aims to focus on outcomes relevant to patients, it lacks dimensions important to individuals with rheumatoid arthritis. The data illustrate difficulties in finding patients' preferred outcomes and imply tactics for arriving at meaningful measurements.

Patient-initiated appointments compared with standard outpatient care for rheumatoid arthritis: a randomised controlled trial.

OBJECTIVES: To test the hypothesis that implementing a patient-initiated system of care could improve clinical outcome in rheumatoid arthritis (RA) using disease activity guided management. METHODS: An 18-month controlled blinded end point two-centre study with 131 patients with RA randomised to intervention (n=64) or control (n=67). The intervention group participants were guaranteed appointments to a rheumatologist within 10 working days if they subjectively experienced a flare in disease activity. The control group participants were booked in advance according to guidelines. Independent assessments were performed in the two groups at 0, 3, 6, 12 and 18 months. Outcome measures included: Disease Activity Score 28 (DAS28), a Visual Analogue Scale (satisfaction with care, confidence in care), number of appointments with a rheumatologist. RESULTS: DAS28 decreased. Median satisfaction and confidence in care were >90 mm on Visual Analog Scale. Median number of appointments was 3. There were no significant differences between the groups among these outcomes. Visits in the intervention group more often resulted in change of treatment than in the control group (p<0.001). CONCLUSIONS: Patient-initiated care was neither better nor inferior to traditional care in terms of outcomes analysed. Patient-initiated appointments can safely be used in everyday outpatient care of RA to empower the patient, if disease activity guided management is applied. Further research should investigate if this intervention can target a subgroup of patients and hence also result in released resources.

Pseudo-understanding: an analysis of the dilution of value in healthcare.

BACKGROUND: Management concepts cycle through healthcare in trends lasting 3-5 years. This may hinder policy-makers, healthcare managers, researchers and clinicians from grasping the intricacies of a management concept and prevent organisations from realising the potential of these concepts. We, therefore, sought to characterise how the newest management concept, value-based healthcare (VBHC), is used and understood in the scientific literature. METHODS: We developed a novel five-step approach: (1) identification of a trend-starting article, (2) identification of key conceptual aspects in the trend-starting article, (3) collection of citing articles and identification of citing text, (4) categorisation of citing text to evaluate which aspects were used and (5) categorisation of citing text according to the structure of observed learning outcomes (SOLO) taxonomy to evaluate understanding. RESULTS: We identified four aspects in the trend-starting article, 'What is value in healthcare', of which value and outcomes were the most cited. More than one-quarter of the citing texts demonstrated no understanding of the aspect referred to; most demonstrated a superficial understanding. Level of understanding was inversely related to journal impact factor (IF), and did not change significantly over time. A deeper understanding was demonstrated in those articles that repeatedly cited the trend-starting article. CONCLUSIONS: None of the four aspects were understood at a level required to develop the management concept of VBHC. VBHC may be undergoing a process of dilution rather than diffusion. To break the cycle of management trends, we encourage a deeper reflective process about the translation of management concepts in healthcare.