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- Sleep and awakening quality during COVID-19 confinement: complexity and relevance for health and behaviorPublication . Paiva, Teresa; Reis, Cátia; Feliciano, Amélia; Canas-Simião, Hugo; Machado, Maria Augusta; Gaspar, Tânia; Tomé, Gina; Branquinho, Cátia; Silva, Maria Raquel; Ramiro, Lúcia; Gaspar, Susana; Bentes, Carla; Sampaio, Francisco; Pinho, Lara; Pereira, Conceição; Carreiro, Alexandra; Moreira, Susana; Luzeiro, Isabel; Videira, Gabriela; Fonseca, Júlio; Bernarda, Ana; Castro, Joana Vaz; Rebocho, Sofia; Almondes, Katie; Canhão, Helena; Matos, Margarida GasparObjective: The aim of this study was to evaluate sleep and awakening quality (SQ and AQ) during COVID-19 in a large and diversified population in order to identify significant associations and risks in terms of demography, health and health-related behaviors, sleep variables, mental health, and attitudes. Methods/Results:Online surveys were used for data collection, received from 5479 individuals from the general population, sleep disorder patients, and COVID-involved (medical doctors (MDs) and nurses) and COVID-affected professionals (teachers, psychologists, and dentists). SQ and AQ were worse in adults, females, and high-education subjects. Feeling worse, having economic problems, depression, anxiety, irritability, and a high Calamity Experience Check List (CECL) score during COVID were significantly associated with poor SQ and AQ. Shorter sleep duration, increased latency, poor nutrition, low physical activity, increased mobile and social network use, more negative and less positive attitudes and behaviors were associated with poor AQ. Conclusions: The SQ logistic regression showed gender, morbidities, CECL, and awakenings as relevant, whereas, for AQ, relevant variables further included age and physical activity. Aiming to have a high stress compliance, each individual should sleep well, have important control of their mood, practice positive behaviors while dismissing negative behaviors and attitudes, practice exercise, have adequate nutrition, and beware of technologies and dependences.
- The impact of osteoarthritis on early exit from work: results from a population-based studyPublication . Laires, Pedro A.; Canhão, Helena; Rodrigues, Ana M.; Eusébio, Mónica; Gouveia, Miguel; Branco, Jaime C.Background: Osteoarthritis (OA) is a leading cause of pain and disability, which may be a source of productivity losses. The objectives of this study were to describe the impact of OA, namely through pain and physical disability, on early exit from work and to calculate its economic burden. Methods: We analysed data from the national, cross-sectional, population-based EpiReumaPt study (Sep2011-Dec2013) in which 10,661 individuals were randomly surveyed in order to capture all cases of rheumatic diseases. We used all participants aged 50-64, near the official retirement age, who were clinically validated by experienced rheumatologists (n = 1286), including OA cases. A national database was used to calculate productivity values by gender, age and region, using the human capital approach. The impact of OA on the likelihood of early exit from work and the population attributable fractions used to calculate due economic burden (indirect costs) were obtained at the individual level by logistic regression. All results were based on weighted data. Results: Almost one third of the Portuguese population aged 50-64 had OA (29.7%; men: 16.2% and women: 43.5%) and more than half were out of paid work (51.8%). Only knee OA is associated with early exit from work (OR: 2.25; 95%CI: 1.42-3.59; p = 0.001), whereas other OA locations did not reach any statistical difference. Furthermore, we observed an association between self-reported longstanding musculoskeletal pain (OR: 1.55; 95%CI: 1.07-2.23; p = 0.02) and pain interference (OR: 1.35; 95%CI: 1.13-1.62; p = 0.001) with early exit from work. We also detected a clear relationship between levels of disability, measured by the Health Assessment Questionnaire (HAQ), and the probability of work withdrawal. The estimated annual cost of early exit from work attributable to OA was €656 million (€384 per capita; €1294 per OA patient and €2095 per OA patient out-of-work). Conclusions: In this study, we observed an association between OA and early exit from work, largely dependent on pain and disability. This relationship translates into a meaningful economic burden amounting to approximately 0.4% of the national Gross Domestic Product (GDP). The high prevalence and the impact of this disabling chronic disease highlight the need to prioritize policies targeting early exit from work in OA.
- Peer adoption and development of health innovations by patients: national representative study of 6204 citizensPublication . Oliveira, Pedro; Zejnilovic, Leid; Azevedo, Salome; Rodrigues, Ana Maria; Canhão, HelenaBackground: There is growing evidence that many patients and caregivers innovate by developing new solutions to cope with their health disorders. Given the easy access to vast internet resources and peers globally, it is increasingly important to understand what may influence user innovation and its adoption in health for improving individual well-being and ensuring their safety, in particular, how interactions with peers and physicians or search behavior, along with sociodemographics, may influence the decision to develop a solution or adopt one developed by a peer. Objective: The aim of this paper was to study the development and peer-to-peer adoption of user innovations in health care and identify individual-level factors associated with these processes. Methods: Data were collected via computer-assisted phone survey from a large, random, and representative sample of adult residents in Portugal (N=6204). User innovation questions were added to 1 wave of an ongoing observational, longitudinal, population-based epidemiological study. By asking about individual innovation activity, the sample was split into 3 groups: (1) the developers of health-related solutions for own use (developers), (2) the adopters of solutions developed by other patients or caregivers (peer-to-peer adopters), and (3) the rest of the population. Within the last group, intention to adopt was measured and used as a proxy of future behavior. Regression analysis is used to test the associations. Results: In the population considered in this paper, an estimated 1.3% (75/6008) reported having developed a solution for own use and 3.3% reported to have adopted a solution developed by peers. The 3 groups (developers, adopters, and remaining population) have distinctive characteristics. Gender plays an important role in the solution development, as women are less likely to develop one (odds ratio [OR] 0.4, 95% CI 0.20-0.81; P<.05). Education is positively associated with the development activity (OR 1.13, 95% CI 1.03-1.24; P<.05) but also with the intentions to adopt a peer-developed solution. Search for health-related information is positively associated with the development, adoption, and the intentions to adopt a solution. Interactions with peers over the internet are rare, but in-person interactions are frequent and have a positive association with the dependent variables in all 3 groups. The results also suggest that trust in doctors represents an important dimension that shapes the attitudes of the population toward peer-developed solutions. Conclusions: This paper demonstrates the importance of the peer community, doctor-patient relationship, citizen’s search for information on innovation, and individual attitudes toward peer-to-peer adoption in health care. It stresses the need for a reliable Web-based health-related information and the necessity to deeper understand complex relationships between the need to improve health and fulfill the need and the perception of the health care system.
- Innovation by patients with rare diseases and chronic needsPublication . Oliveira, Pedro; Zejnilovic, Leid; Canhão, Helena; Hippel, Eric VonWe provide the first empirical exploration of disease-related innovation by patients and their caregivers. Our aims were to explore to what degree do patients develop innovative solutions; how many of these are unique developments; and do these solutions have positive perceived impact on the patients' overall quality of life? In addition, we explored the factors associated with patient innovation development, and sharing of the solutions that the patients developed. Methods: We administered a questionnaire via telephone interviewing to a sample of 500 rare disease patients and caregivers. The solutions reported were pre-screened by the authors for their fit with the self-developed innovation aim of the study. All the reported solutions were then validated for their novelty by two medical professionals. Logistic regression models were used to test the relationships between our key variables, patient innovation and solution sharing. Results: 263 (53%) of our survey respondents reported developing and using a solution to improve management of their diseases. An initial screening removed 81 (16%) solutions for being an obvious misfit to the self-developed innovation aim of the study. This lowered the sample of potentially innovative solutions to 182 (36%). Assessment of novelty and usefulness of the solutions, conducted by two medical evaluators, confirmed that 40 solutions (8%) were indeed novel, while the remaining 142 (28%) were already known to medicine. The likelihood of patient innovation increased as the education level increased (OR 2, p < 0.05), and as their perception of limitations imposed by their disease increased (OR 1.3, p < 0.05). 55 individuals diffused their solutions to some degree, with 50 of these sharing via direct diffusion to other patients. There is a positive relationship between the impact of a solution on the respondents' overall quality of life and likelihood of solution sharing. Conclusions: Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregivers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solutions and best practices to and among patients and their caregivers.
- Home-based intervention program to reduce food insecurity in elderly populations using a TV app: study protocol of the randomized controlled trial Saúde.Come SeniorPublication . Rodrigues, Ana Maria; Gregório, Maria João; Gein, Pierre; Eusébio, Mónica; Santos, Maria José; Sousa, Rute Dinis de; Coelho, Pedro S.; Mendes, Jorge M.; Graça, Pedro; Oliveira, Pedro; Branco, Jaime C.; Canhão, HelenaBackground: The limited or uncertain access to adequate food in elderly people includes not only economic restrictions but also inability of food utilization due to functional or cognitive impairment, health problems, and illiteracy. Objective: The aim of this work is to present the protocol of the randomized controlled trial Sande.Come Senior, an educational and motivational television (TV)-based intervention to promote healthy lifestyles and decrease food insecurity in elderly people. Methods: A randomized controlled study will be conducted in subjects aged 60 years and older with food insecurity, identified at 17 primary care centers in the Lisboa e Vale do Tejo health region in Lisbon, Portugal. The primary outcome will be the changes in participants' food insecurity score (evaluated by the Household Food Insecurity Scale) at 3 months Change in other outcomes will be assessed (dietary habits, nutritional status, physical activity, health status, and clinical outcomes). Subjects will be followed over 6 months; the intervention will last 3 months Data collection will be performed at 3 different time points (baseline, end of intervention at 3 months, and follow-up at 6 months) The intervention is based on an interactive TV app with an educational and motivational program specifically developed for the elderly that has weekly themes and includes daily content in video format: (1) nutrition and diet tips for healthy eating, (2) healthy, easy to cook and low-cost recipes, and (3) physical exercise programs. Furthermore, brief reminders on health behaviors will also be broadcasted through the TV app. The total duration of the study will be 6 months. The intervention is considered to be effective and meaningful if 50% of the individuals in the experimental group have a decrease of 1 point in the food insecurity score, all the remaining being unchanged. We expect to include and randomize 282 (141 experimental and 141 control) elderly with food insecurity. We will recruit a total of 1,128 subjects considering that 50% of the target individuals are food insecure (based on INFOFAMILIA Survey) (567) and about 50% of those will adhere to the study (282). Results: The randomized controlled trial with the 12-week home-based intervention with a comprehensive program on healthy eating and physical activity delivery is planned to start recruiting participants at the end of 2017. Conclusions: This study will assess the efficacy of this innovative tool (Sande.Come Senior) for disseminating relevant health information, modifying behaviors, and decreasing food insecurity in an easy, low-cost, and massive way.
- Evaluating SARS-CoV-2 seroconversion following relieve of confinement measuresPublication . Gonçalves, Juliana; Sousa, Rita L.; Jacinto, Maria J.; Silva, Daniela A.; Paula, Filipe; Sousa, Rute; Zahedi, Sara; Carvalho, Joana; Cabral, M. Guadalupe; Costa, Manuela; Branco, Jaime C.; Canhão, Helena; Alves, José D.; Rodrigues, Ana M.; Soares, HelenaSeroprevalence studies are crucial both for estimating the prevalence of SARS-CoV-2 exposure and to provide a measure for the efficiency of the confinement measures. Portuguese universities were closed on March 16th 2020, when Portugal only registered 62 SARS-CoV-2 infection cases per million. We have validated a SARS-CoV-2 ELISA assay to a stabilized full-length spike protein using 216 pre-pandemic and 19 molecularly diagnosed SARS-CoV-2 positive individual's samples. At NOVA University of Lisbon, presential work was partially resumed on May 25th with staggered schedules. From June 15th to 30th, 3–4 weeks after the easing of confinement measures, we screened 1,636 collaborators of NOVA university of Lisbon for the presence of SARS-CoV-2 spike specific IgA and IgG antibodies. We found that spike-specific IgG in 50 of 1,636 participants (3.0%), none of which had anti-spike IgA antibodies. As participants self-reported as asymptomatic or paucisymptomatic, our study also provides a measurement of the prevalence of asymptomatic/paucisymptomatic SARS-CoV-2 infections. Our study suggests that essential workers have a 2-fold increase in viral exposure, when compared to non-essential workers that observed confinement. Additional serological surveys in different population subgroups will paint a broader picture of the effect of the confinement measures in the broader community.
- Interventions aiming to reduce early retirement due to rheumatic diseasesPublication . Laires, Pedro; Gouveia, M.; Canhão, H.Introduction: Aging of the population and early retirement translates into productivity losses to society. Persistence of working life is crucial to counteract this sustainability issue faced by western countries. Musculoskeletal and rheumatic diseases (RD) may cause work disability and early exit from work, including early retirement. The objective of this article is to review the current knowledge about interventions aiming to reduce early retirement due to RD. Methods:We searched PubMed and The Cochrane Library for studies either in English or Portuguese between January 2000 and June 2016 that evaluated the impact of interventions targeting early retirement in RD patients still at work. We also searched for grey literature from Portuguese institutional repositories. Results: We identified several published studies tes - ting pharmacologic and non-pharmacologic vocatio - nal rehabilitation interventions. None was specifically identified for Portugal. The general low quality of the literature and its inconsistency makes it unfeasible to draw definitive conclusions. However, some broad re - commendations might be outlined. An effective intervention must: 1) act upon different levels (e.g. RD patient, workplace), involving several stakeholders (e.g. rheumatologists, occupational physicians, employers); 2) prioritize the right patients (e.g. more disabling RD); and 3) consider the patients' role, for instance by including an element of patient education and support. Despite the lack of good quality evidence on this field, there seems to be a growing interest in the internatio - nal scientific community with several ongoing studies promoting such interventions. This promising data will be very useful to set up effective policies. Conclusions: This article summarizes the current knowledge about the impact of interventions to avoid or mitigate early retirement in RD patients. It highlights the demand for further research and it also contributes to aware decision-makers about the relevance of this topic, particularly in Portugal.
- EpiReumaPt - the study of rheumatic and musculoskeletal diseases in Portugal: a detailed view of the methodologyPublication . Rodrigues, Ana M.; Gouveia, Nélia; Costa, Leonor Pereira da; Eusébio, Mónica; Ramiro, Sofia; Machado, Pedro; Mourão, Ana Filipa; Silva, Inês; Laires, Pedro; Sepriano, Alexandre; Araújo, Filipe; Coelho, Pedro Simões; Gonçalves, Sónia; Zhao, Ana; Fonseca, João Eurico; Almeida, J. M. Caldas de; Tavares, Viviana; Silva, José António Pereira da; Barros, Henrique; Cerol, Jorge; Mendes, Jorge; Carmona, Loreto; Canhão, Helena; Branco, Jaime C.Rheumatic and musculoskeletal diseases (RMD) are prevalent and leading causes of disability and consumption of healthcare and social resources. EpiReumaPt is a national population-based survey developed by the Portuguese Society of Rheumatology that aimed to estimate the prevalence of RMDs and determine their impact on function, quality of life, mental health and use of healthcare resources. This article describes in detail the design, methodology and planned analyses of EpiReumaPt. Recruitment started in September 2011 and finished in December 2013. This study involved a three-stage approach. The first step was a face-to-face survey performed by trained interviewers at the household of 10,661 subjects who where randomly selected by a stratified multistage sampling. A highly sensitive screening questionnaire for RMDs was used. Secondly, participants who screened positive (64%) for at least one RMD as well as 20% of individuals with a negative screening were invited for assessment by a rheumatologist. In total, 3,877 subjects participated in this second phase, where they were also invited to donate a blood sample to be stored at the Biobanco-IMM. History and physical examination, followed by appropriate laboratory and imaging tests were performed. At the end of the visit, the rheumatologist established a diagnosis. Finally, a team of three experienced rheumatologists reviewed all the clinical data and defined the diagnoses according to previously validated criteria. The EpiReumaPt dataset, containing data from several questionnaires, various clinical measurements and information from laboratory and imaging tests, comprises an invaluable asset for research. The large amount of information collected from each participant and the large number of participants, with a wide age range covering and being representative of the adults from the entire country, makes EpiReumaPt the largest study of RMDs performed in Portugal.
- Innovations developed by patients and informal caregivers for needs associated to rheumatic diseasesPublication . Jacinto, Maria João; Oliveira, Pedro; Canhão, HelenaUntil recently, innovation in healthcare was mainly achieved through the development of new drugs, therapies, and medical devices by big pharma and medtech companies; however, the innovative potential for this field is much broader. The patients and caregivers' role in healthcare is often associated with disease management, demand for their own illness data, and its exchange with other patients. However, the patients and caregivers' capacity to innovate to cope with limitations associated with their health condition is a growing phenomenon and starting to be supported by healthcare stakeholders to achieve a truly patient-centric system. Our previous research has shown that these uncommon innovators can develop a wide range of solutions, from simple adaptations and products to highly technological biomedical devices. In this paper, we present novel solutions developed by rheumatic patients, their caregivers, and collaborators, published on the “Patient Innovation” platform (https://patient-innovation.com/), with a focus on the innovator profile, the need that triggers the innovative process, the type of motivation behind the product, and the products developed. The most significant needs that motivate innovation are the will to increase the level of independence (71%) and to be able to perform daily routine activities (65%). In over 80% of cases, the fact that the market does not fully fulfill the needs felt during daily activities is the main motivation to innovate. It is thus concluded that there is room for innovation in rheumatic diseases with solutions developed by patients and informal caregivers that intend to solve needs that the healthcare market is not covering.