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.

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.

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.