Quality of life assessment in amyloid transthyretin (ATTR) amyloidosis.

BACKGROUND: Amyloid transthyretin (ATTR) amyloidosis is caused by the systemic deposition of transthyretin molecules, either normal (wild-type ATTR, ATTRwt) or mutated (variant ATTR, ATTRv). ATTR amyloidosis is a disease with a severe impact on patients' quality of life (QoL). Nonetheless, limited attention has been paid to QoL so far, and no specific tools for QoL assessment in ATTR amyloidosis currently exist. QoL can be evaluated through patient-reported outcome measures (PROMs), which are completed by patients, or through scales, which are compiled by clinicians. The scales investigate QoL either directly or indirectly, i.e., by assessing the degree of functional impairment and limitations imposed by the disease. DESIGN: Search for the measures of QoL evaluated in phase 2 and phase 3 clinical trials on ATTR amyloidosis. RESULTS: Clinical trials on ATTR amyloidosis have used measures of general health status, such as the Short Form 36 Health Survey (SF-36), or tools developed in other disease settings such as the Kansas City Cardiomyopathy Questionnaire (KCCQ) or adaptations of other scales such as the modified Neuropathy Impairment Score +7 (mNIS+7). CONCLUSIONS: Scales or PROMs for ATTR amyloidosis would be useful to better characterize newly diagnosed patients and to assess disease progression and response to treatment. The ongoing ITALY (Impact of Transthyretin Amyloidosis on Life qualitY) study aims to develop and validate 2 PROMs encompassing the whole phenotypic spectrum of ATTRwt and ATTRv amyloidosis, that might be helpful for patient management and may serve as surrogate endpoints for clinical trials.

Healthy Living and Co-Production: Evaluation of Processes and Outcomes of a Health Promotion Initiative Co-Produced with Adolescents.

Co-production is an approach to designing, delivering, and evaluating public services through strict collaboration among professionals and the people using services with an equal and reciprocal relationship. Health promotion initiatives that include education services rarely use the co-production approach. Nevertheless, the value of co-production is widely recognized, although it is considered a normative good, and scarce and mixed evidence is available in literature. The purpose of this paper is to provide evidence supporting the hypothesis that a co-production approach, applied to an intervention for preventing obesity, can be effective and efficient. To this end, an evaluation of the processes, outputs meant as intermediate results, and behavioral and economic outcomes of a public health-promotion initiative co-produced and co-delivered with adolescents (beFood) was conducted. Mixed methods were used, including field-observations, two self-reported questionnaires, and an opportunity-cost analysis that compared beFood to traditional approaches of public health promotion. The co-production model was successfully implemented and appears to be effective-more than 5000 adolescents were reached by only 49 co-producer adolescents, who reported behavioral changes (e.g., eating better and practicing more physical activity). The cost analysis showed that the co-production approach was also efficient, producing relevant savings and potentially making available more than 3000 h of professionals' time. This research can support a re-thinking of public institutions' organization, public initiatives' design, and public servants' role.

Waiting time information in the Italian NHS: A citizen perspective.

Public involvement in the management and communication of waiting times is known to support initiatives to reduce waiting times, as well as increase fairness and promote transparency and accountability. In order to improve transparency and communication to citizens, Italy recently updated the National Regulatory Plan for Waiting Lists (2019-2021), which calls for the disclosure of waiting time information on healthcare provider webpages. This study analyses waiting time information for outpatient visits and digital services available on the institutional website pages of 144 public healthcare organisations in nine regions and two autonomous provinces of Italy. Web pages were analysed both in terms of the available information/services, using a grid, and in terms of the quality of the text using an advanced readability assessment tool (READ-IT). This information was complemented and validated by regional healthcare key informants during research-specific workshops. Waiting time information disclosure, digital services and text readability varied both within and between the regional healthcare systems and organisations. The types and characteristics of waiting time information and statistics vary considerably with a negative impact on their use for benchmarking and their readability and usability for booking purposes. Overall, communication weaknesses due to low harmonization and clarity of information can undermine efforts in effectively informing and involving the public through online waiting time data disclosure.

Are people's health care needs better met when primary care is strong? A synthesis of the results of the QUALICOPC study in 34 countries.

AIM: This article synthesises the results of a large international study on primary care (PC), the QUALICOPC study. BACKGROUND: Since the Alma Ata Declaration, strengthening PC has been high on the policy agenda. PC is associated with positive health outcomes, but it is unclear how care processes and structures relate to patient experiences. METHODS: Survey data were collected during 2011-2013 from approximately 7000 PC physicians and 70 000 patients in 34, mainly European, countries. The data on the patients are linked to data on the PC physicians within each country and analysed using multilevel modelling. FINDINGS: Patients had more positive experiences when their PC physician provided a broader range of services. However, a broader range of services is also associated with higher rates of hospitalisations for uncontrolled diabetes, but rates of avoidable diabetes-related hospitalisations were lower in countries where patients had a continuous relationship with PC physicians. Additionally, patients with a long-term relationship with their PC physician were less likely to attend the emergency department. Capitation payment was associated with more positive patient experiences. Mono- and multidisciplinary co-location was related to improved processes in PC, but the experiences of patients visiting multidisciplinary practices were less positive. A stronger national PC structure and higher overall health care expenditures are related to more favourable patient experiences for continuity and comprehensiveness. The study also revealed inequities: patients with a migration background reported less positive experiences. People with lower incomes more often postponed PC visits for financial reasons. Comprehensive and accessible care processes are related to less postponement of care. CONCLUSIONS: The study revealed room for improvement related to patient-reported experiences and highlighted the importance of core PC characteristics including a continuous doctor-patient relationship as well as a broad range of services offered by PC physicians.

Value in Healthcare and the Role of the Patient Voice.

A prevailing feature of recent healthcare delivery and reform initiatives is a focus on increasing the value provided by investment in services, alongside a more nuanced understanding of how such value should be considered. Effective measurement of this value remains an elusive goal for most health system performance assessment (HSPA) systems. A more prominent role for the patient voice can enable a better understanding of value at both patient and population levels. The Tuscan HSPA model has evolved over the past several years by adopting the perspective of service users, including multiple dimensions of performance, and illustrating the interactions of these elements. For the heart failure pathway, this approach has now been further developed to combine these dimensions with the systematic electronic collection of patient-reported outcome measures and patient-reported experience measures - initially in a specialist hospital. This enables a richer understanding of the value delivered by professionals as they operate in reality, as opposed to by organizational boundaries, and more timely and actionable insights into the drivers of that value. This commentary sets out the latest developments in the Tuscan HSPA and the lessons from implementation.

Rethinking Healthcare Performance Evaluation Systems towards the People-Centredness Approach: Their Pathways, their Experience, their Evaluation.

Patient experience should be the starting point to achieve a high quality of care. Coherently, healthcare performance evaluation systems, driving the change in line with the main strategic goals, should be designed considering the patient perspective. Instead, they are traditionally defined according to the healthcare service provider's point of view. Consequently, they reproduce a "silo-vision" characterized by a clear separation of responsibilities limited to a specific setting of care or to a single organization. This commentary discusses the importance of using patient-reported measures together with indicators based on administrative data to evaluate cross-setting healthcare services within a multidimensional healthcare performance evaluation system. The experience of the Tuscany regional healthcare Performance Measurement System (PMS), implemented more than 10 years ago and in continuous evolution, represents an innovative example of how to measure the quality of the whole care pathway including patient experience. This new approach is based on a systematic, systemic and standardized collection of patient-reported experience measures in several healthcare pathways and evaluating them using a coherent graphical representation. Targets, incentives and other managerial tools are fixed, overcoming organizational boundaries and integrating the patient point of view with the goal of moving the healthcare system towards a patient-centredness approach to care.