Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe

2020 ◽  
pp. 174239532096861
Author(s):  
Meryem-Maud Farhat ◽  
Alain Cornet ◽  
Charissa Frank ◽  
Ilaria Galetti ◽  
Juergen Grunert ◽  
...  
Keyword(s):  
Health Care ◽  
Patient Education ◽  
Connective Tissue ◽  
Health Care Providers ◽  
Unmet Needs ◽  
Musculoskeletal Diseases ◽  
Connective Tissue Diseases ◽  
Reference Network ◽  
Care Providers ◽  
European Reference Network

Objective The European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases involves health care providers (HCPs) from 8 European countries and 7 patients’ representatives of European Patient Advocacy Groups. The objective was to evaluate current practice and unmet needs for patient education (PE) in Europe. Methods A questionnaire was sent to HCP members asking about the PE practices and another, to enquire about their needs, was sent to patients’ associations in the different countries. Results The questionnaire was completed by 33 HCPs. Half had no specific staff members dedicated to PE. For HCPs with dedicated staff, 83.3% (n = 11) considered that care providers were insufficient to meet patients’ needs. Most of HCPs would like to see the practice of PE standardized. Sixty eight percent (n = 1093) of patients suffering from connective tissue diseases completed the questionnaire had never heard about PE. Most of them were interested in taking part in a PE program. Discussion Our survey revealed a strong interest in PE among patients and HCP and heterogeneity of practice. PE appeared important for both HCPs and patients. An online course for medical students in Europe will be developed in partnership with EULAR to respond to these unmet needs.

scholarly journals Introduction to Endo-ERN–scope and mission

Endocrine ◽  
2021 ◽  
Author(s):  
Alberto M. Pereira ◽  
Olaf Hiort
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Governance Structure ◽  
Reference Network ◽  
Care Providers ◽  
European Reference Network ◽  
Raising Awareness ◽  
European Reference Networks ◽  
Patient Representatives ◽  
Low Prevalence

AbstractThe official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients affected by rare or low prevalence and complex conditions. The European Reference Network on Rare Endocrine Conditions (Endo-ERN) covers specific expertise from birth to senescence with a specific governance structure characterized by both a pediatric and an adult chair, and equal responsibilities for patient representatives and health care providers. The introduction on the scope and mission of Endo describes the complexity of the Endo-ERN mission and will thrive toward the ultimate aim and mission of the network of reducing health care inequalities across Europe. Specific knowledge and medical expertise of the existing rare endocrine condition is urgently needed, and therefore, raising awareness for Rare Disease Day from the Endo-ERN perspective is imperative.

scholarly journals Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey

RMD Open ◽  
2020 ◽  
Vol 6 (2) ◽  
pp. e001344
Author(s):  
Rosaria Talarico ◽  
Diana Marinello ◽  
Stefano Bombardieri ◽  
Gerd Burmester ◽  
Joao Fonseca ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Connective Tissue ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Healthcare Professionals ◽  
Musculoskeletal Diseases ◽  
Family Members ◽  
Disease Patient ◽  
Connective Tissue Diseases ◽  
Reference Network

IntroductionThe European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.MethodsERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.ResultsThe results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.ConclusionERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.

scholarly journals Engaging Parents and Health Care Providers to Inform Development of a Behavioral Intervention Technology to Promote Pediatric Behavioral Health: Mixed Methods Study (Preprint)

2021 ◽  
Author(s):  
Sean M. O'Dell ◽  
Heidi R Fisher ◽  
Victoria Schlieder ◽  
Tracey Klinger ◽  
Rachel L Kininger ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Behavioral Health ◽  
Health Care Providers ◽  
Unmet Needs ◽  
Behavioral Health Care ◽  
Mixed Methods Study ◽  
Targeted Prevention ◽  
Care Providers ◽  
Current Practices

BACKGROUND Despite innovations to integrate behavioral health practitioners in primary care settings and online adaptations of effective parenting programs, access to care gaps persist for youth and families in need. Behavioral intervention technologies (BITs) represent a modality for targeted prevention with promise for transforming primary care behavioral health by empowering parents to take charge of their child’s behavioral health care. In order to realize the potential of BITs, research is needed to understand parental needs in a BIT, as well as the status quo of parent self-help and parent-provider collaboration to identify and address behavioral health challenges. OBJECTIVE Engage parents and health care providers to better understand unmet needs and current practices to inform continued development of a BIT for parents to address common behavioral health challenges. METHODS We conducted a convergence validation mixed methods study in which parent quantitative surveys (N=385) on preferences and current practices related to behavioral health themes to be addressed in a BIT were integrated with focus group interview data on internal and external contextual factors contributing to parental unmet needs and current practices with 48 health care stakeholders in 9 child-serving clinics within a large, predominantly rural health system. We integrated these data using joint displays and synthesized areas of confirmation, expansion, and discordance between parents and health care stakeholders. RESULTS Parents frequently endorsed about half of the available themes in their “top 3”, indicating that BITs may not be the preferred modality for all targeted prevention. Additionally, parents also frequently endorsed themes that were not related to child psychopathology (e.g., parenting stress and family communication), indicating parents are interested in guidance on parenting beyond challenging child behavior. Health care stakeholders indicated that an online platform aligns with how parents already seek behavioral health guidance and suggested that a BIT may connect families with evidence-based guidance sooner. We identified areas of convergence related to overt behavior problems (e.g., disruptive behavior, nutrition and eating), and areas of divergence related to internalizing problems and cross-cutting issues that may be more difficult for health care providers to detect. Data integration helped to expand our understanding with regard to factors that may lead to more effective parent-provider partnerships, including the impact of limited time pressure office visits and a deeper understanding of how unmitigated parenting stress interrelates with qualities of parent help-seeking behavior. CONCLUSIONS These findings provide a rich understanding of the complexity involved in meeting parents’ needs for behavioral health guidance in a primary care setting using BITs. Further triangulation of these findings in user testing studies for BIT prototypes is needed to refine our understanding of how to successfully develop and implement an effective BIT to guide parents in taking charge of their child’s behavioral health care. CLINICALTRIAL N/A

scholarly journals Unmet Needs for Care and Medications, Cost as a Reason for Unmet Needs, and Unmet Needs as a Big Problem, due to Health-Care Provider (Dis)Continuity

2018 ◽  
Vol 5 (4) ◽  
pp. 258-266 ◽  
Author(s):  
Michelle L Stransky
Keyword(s):  
Health Care ◽  
Health Care Provider ◽  
Health Care Providers ◽  
Care Provider ◽  
Unmet Needs ◽  
Medical Expenditure Panel Survey ◽  
Medical Expenditure ◽  
Care Providers ◽  
Needs For Care ◽  
Unmet Needs For Care

Objective: Provider discontinuity is associated with poorer health-care outcomes compared to continuity in studies using retrospective reports of provider (dis)continuity. This study examined unmet needs for care and assessed cost as the reason for and the level of the problem resulting from unmet needs by provider (dis)continuity using longitudinal data. Methods: Pooled data on 10 714 working-age adults (aged 18-64) from the Medical Expenditure Panel Survey (panels 16 [2011-2012] and 17 [2012-2013]) were analyzed. Provider (dis)continuity was defined by 2 reports of having a health-care provider during the period. Results: Persons who lost providers were more likely to forego medical care and prescription medications, forego care due to cost, and report that delaying care was a big problem than their peers who experienced continuity. Persons who gained providers were more likely to delay dental care than those who always had, lost, or never had providers. Conclusions: Persons who experience discontinuity have poorer access to care than their peers who experience continuity. Public health initiatives should promote longitudinal relationships between persons and health-care providers.

Depression in cancer: An evaluation of patient education resources.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24194-e24194
Author(s):  
Jim (Zhang Hao) Li ◽  
Mingyang Wang ◽  
Paris-Ann Ingledew
Keyword(s):  
Health Care ◽  
Patient Education ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Search Engines ◽  
Online Resources ◽  
Future Research ◽  
Care Providers ◽  
Patient Comprehension

e24194 Background: In recent years, there has been increasing awareness surrounding mental health and depression among cancer patients. Concurrently, the internet has cemented its role as a mainstay source of health information for the general public. However, little is known about the quality of online resources addressing depression specifically in cancer patients. Therefore, we aim to systematically evaluate the quality of such information. Methods: The term "depression in cancer patients" was searched online using the search engine Google and the meta-search engines Dogpile and Yippy. A set of predetermined inclusion and exclusion criteria was applied to all search results, which yielded 48 websites for inclusion. An evidence-based rating tool was then used to score the websites based on the six domains of Affiliation, Accountability, Interactivity, Structure & Organization, Readability, and Content Quality. The results were analyzed using descriptive statistics. Results: Of the 48 websites evaluated, 50% were commercial. In terms of accountability measures, 63% of websites disclosed authorship, 54% cited one or more reliable sources, and 38% were updated within the last two years. Although in-site search engines and video support were found in 94% and 52% of websites respectively, the presence of other interactive features were considerably lower. The average readability was at a grade 12.3 level using the Flesch-Kincaid scale and 11.3 using the SMOG Index, both of which were significantly higher than the traditionally recommended grade-six level ( p < 0.0001 for both). The most commonly covered topics were symptoms and treatment – found on 87% and 83% of websites respectively. Prevention and prognosis were not covered by any of the websites. Content accuracy was generally high among covered topics. Conclusions: Many websites addressing depression in cancer have poor authorship disclosure, attribution, and currency. Additional interactive features should be encouraged to facilitate user-friendliness. Poor readability may pose a barrier for patient comprehension, indicating a need for health care providers to proactively guide patients to suitable resources. Despite high content accuracy in other topics, prevention and prognosis are seldom covered. Our results could help guide the development of new patient education materials and better inform health care providers about the limitations of available online resources. Future research should aim to elucidate reasons contributing to difficult readability levels and identify topics that patients need additional information in.

Plain Language Pediatrics

2008 ◽  
Author(s):  
Mary Ann Abrams ◽  
Benard P. Dreyer
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Patient Education ◽  
Health Care Providers ◽  
Care Providers ◽  
Plain Language ◽  
Reading Levels ◽  
Limited Health Literacy ◽  
Ear Infections ◽  
Limited Health

An essential tool to help improve communication between pediatrician and patient or family, Plain Language Pediatrics offers a framework for implementing a plain language approach to communication in your office, and provides specific steps you can take to ensure the information you present to patients and their parents is clearly understood. Included are 25 reproducible plain language patient education handouts--in English and Spanish! Plain Language Pediatrics combines health literacy and plain language principles to present information in a way that makes it as easy as possible for everyone to understand, and applies these principles to a variety of ambulatory acute, chronic, and preventive conditions. Common pediatric topics such as asthma, ADHD, ear infections, and medical dosing are addressed in detail. This robust resource is divided into 2 parts. Part I explores limited health literacy, including the scope of the problem, how it affects children in particular, and how health care providers can address and overcome health literacy issues with patients and their caregivers. At the heart of Part II is a new series of 25 reproducible patient education handouts in English and Spanish that feature need-to-know information up front, health care terms and jargon, practical pronunciation guides, low reading levels, user-friendly layouts, and simple, purposeful illustrations.

Emerging adulthood and cancer: How unmet needs vary with time-since-treatment

2010 ◽  
Vol 8 (2) ◽  
pp. 151-158 ◽  
Author(s):  
Brett Millar ◽  
Pandora Patterson ◽  
Natacha Desille
Keyword(s):  
Health Care ◽  
Emerging Adulthood ◽  
Emerging Adults ◽  
Health Care Providers ◽  
Psychological Functioning ◽  
Unmet Needs ◽  
Care Providers ◽  
Treatment Situation ◽  
One Year ◽  
The Impact

AbstractObjective:The impact of a cancer experience during emerging adulthood (18–25 years of age) is an under-studied phenomenon, with research on young people typically focussing on children or adolescents. Needs-based research on this population is even scarcer. This study sought to ascertain the most commonly-unmet needs of emerging adults with cancer, in various stages of time-since-treatment, and to investigate links to psychological functioning.Method:Using an earlier version of a needs-based questionnaire, presently under development, as well as additional items developed specifically for this age group, the ten most unmet needs were determined for 63 emerging adults in each of the following three groups: those on or within one year since treatment; those between one and five years since treatment; and those beyond five years since treatment. Psychological functioning was measured by the Depression, Anxiety and Stress Scales (DASS-21).Results:On average, participants rated 17.7 of the 132 needs as unmet. The 10 most unmet needs for each group generated a distinct picture of how needs change as time-since-treatment increases. For those at or within one year since treatment, there were a number of unmet needs directly related to health care provision and the hospital experience. For those whose treatment was more than one year previous, the most unmet needs were more focussed on emotional/psychological issues, particularly related to survivorship and life direction. Positive correlations were found between the number of unmet needs and levels of anxiety and stress.Significance of results:The results of the present study provide quantitative needs-based information about emerging adults with cancer, in the context of their treatment situation. This enables health care providers to better support the emerging adult with cancer in ways that are age-appropriate and time-sensitive. The persisting levels of unmet needs and psychological distress beyond five years since treatment underscore the importance of long-term follow-up and support.

scholarly journals A retrospective cohort study on European Reference Network for Rare Vascular Diseases 5 outcome measures for Hereditary Haemorrhagic Telangiectasia in Denmark

2021 ◽  
Author(s):  
Troels Hvelplund ◽  
Bibi Lange ◽  
Susanne Djernes Bird ◽  
Malene Korsholm ◽  
Anette Kjeldsen
Keyword(s):  
Iron Deficiency ◽  
Outcome Measures ◽  
Health Care Providers ◽  
Clinical Symptoms ◽  
Vascular Diseases ◽  
Reference Network ◽  
Hereditary Haemorrhagic Telangiectasia ◽  
Care Providers ◽  
Autosomal Dominant Disorder ◽  
European Reference Network

Abstract Background Hereditary Haemorrhagic Telangiectasia (HHT) is an autosomal dominant disorder characterized by several clinical symptoms including epistaxis, arteriovenous malformations (AVM), and telangiectasia. In 2018, European Reference Network for Rare Vascular Diseases (VASCERN) recommended five outcome measures for HHT-patients to guide health care providers, some with limited experience in treating HHT, and thereby maximizing the number of HHT-patients receiving good care. The outcome measures cover the following aspects: 1) 90% of the patients should receive a pulmonary AVM (PAVM) screening; 2) 90% of the patients should receive written advice on nosebleed; 3) 70% should be assessed for iron deficiency; 4) 100% of the patients should receive written advice on antibiotic (AB) prophylaxis prior to dental and surgical procedures, and; 5) 100% of relevant patients should receive written advice on pregnancy. We have introduced the outcome measures as Benchmarks in our HHT-centre and wanted to evaluate the extend of implementation we have achieved. We constantly struggle to secure the best possible treatment of our HHT-patients.Methods The study was a non-interventional retrospective study. All data was collected from medical journals and from the Danish HHT-database. Results A total of 180 HHT-patients were included, all diagnosed in the period from January 1st 2016 to December 31st 2020. All patients were screened for PAVM. We could confirm that 66% of patients who had epistaxis received thoroughly advice. Assessment for iron deficiency was performed in 80 % of the adult patients. Thoroughly advice on antibiotic prophylaxis was documented in 75%. Thoroughly advice on pregnancy was documented in 80% of female patients 15-45 years of age. There were no significant differences over time for any of the outcome measures. Conclusions The Danish HHT-centre reached the target threshold for outcome measures 1 and 3. We could not document reaching the target thresholds for outcome measures 2, 4, and 5. As information and education is a very important part of HHT care, we will focus on and document that all patients receive the relevant advice and as part of our care, we will in the near future implement an electronic solution with advice for HHT patients.

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