This article reports on the development of patient resources for the IMPlementing IMProved Asthma self-management as RouTine (IMP2ART) programme that aimed to encourage patients to attend asthma reviews (invitation letters), encourage patients to enquire about asthma action plans (posters), and equip patients with the knowledge to manage their asthma (information website).

To improve supported asthma self-management in UK primary care, the IMP2ART programme developed a whole-systems approach (patient resources, professional education, and organisational strategies).

Linked to behaviour change theory, we developed a range of patient resources for primary care general practices (an information website, invitation letters to invite patients for asthma reviews, and posters to encourage asthma action plan ownership). We elicited qualitative feedback on the resources from people living with asthma in the UK (n = 17). In addition, we conducted an online survey with volunteers in the UK-wide REgister for Asthma researCH (REACH) database to identify where they source asthma information, whether their information needs are met, and what information would be useful (n = 95).

Following feedback gathered from the interviews and the online survey, we refined our patient resources for the IMP2ART programme. Refinements included highlighting the seriousness of asthma, enhancing trustworthiness, and including social support resources. We also made necessary colour and formatting changes to the resources. In addition, the patient resources were updated following the COVID-19 pandemic. The multi-stage development process enabled us to refine and optimise the patient resources. The IMP2ART strategy is now being tested in a UK-wide cluster RCT (ref: ISRCTN15448074).

Information needs are one of the most common unmet supportive care needs of those living with cancer. Little is known about how existing tools for assessing information needs in the cancer context have been created or the role those with lived cancer experience played in their development.

This review aimed to characterize the development and intended use of existing cancer specific information needs assessment tools.

A systematic scoping review was conducted using a peer-reviewed protocol informed by recommendations from the Joanna Briggs Institute and the Prefered Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

Twenty-one information needs assessment tools were included. Most tools were either breast cancer (n = 8) or primary tumor nonspecific (n = 8). Patients and informal carers participated in initial identification of questionnaire items in the minority of cases (n = 6) and were more commonly involved in reviewing the final questionnaire before use or formal psychometric testing (n = 9). Most questionnaires were not assessed for validity or reliability using rigorous quantitative psychometric testing.

Existing tools are generally not designed to provide a rigorous assessment of informational needs related to a specific cancer challenge and are limited in how they have been informed by those with lived cancer experience. Tools are needed that both rigirously address information needs for specific cancer challenges and that have been developed in partnership with those who have experienced cancer. Future directions should include understanding barriers and facilitators to developing such tools.

Publicly available health information is increasingly important for patients and their families. While the average US citizen reads at an 8th-grade level, electronic educational materials for patients and families are often advanced. We assessed the quality and readability of publicly available resources regarding hypoplastic left heart syndrome (HLHS).

We queried four search engines for “hypoplastic left heart syndrome”, “HLHS”, and “hypoplastic left ventricle”. The top 30 websites from searches on Google, Yahoo!, Bing, and Dogpile were combined into a single list. Duplicates, commercial websites, physician-oriented resources, disability websites, and broken links were removed. Websites were graded for accountability, content, interactivity, and structure using a two-reviewer system. Nonparametric analysis of variance was performed.

Fifty-two websites were analysed. Inter-rater agreement was high (Kappa = 0.874). Website types included 35 hospital/healthcare organisation (67.3%), 12 open access (23.1%), 4 governmental agency (7.7%), and 1 professional medical society (1.9%). Median total score was 19 of 39 (interquartile range = 15.8–25.3): accountability 5.5 of 17 (interquartile range = 2.0–9.3), content 8 of 12 (interquartile range = 6.4–10.0), interactivity 2 of 6 (interquartile range = 2.0–3.0), and structure 3 of 4 (interquartile range = 2.8–4.0). Accountability was low with 32.7% (n = 17) of sites disclosing authorship and 26.9% (n = 14) citing sources. Forty-two percent (n = 22) of websites were available in Spanish. Total score varied by website type (p = 0.03), with open access sites scoring highest (median = 26.5; interquartile range = 20.5–28.6) and hospital/healthcare organisation websites scoring lowest (median = 17.5; interquartile range = 13.5–21.5). Score differences were driven by differences in accountability (p = 0.001) – content scores were similar between groups (p = 0.25). Overall readability was low, with median Flesch–Kincaid Grade Level of 11th grade (interquartile range = 10th–12th grade).

Our evaluation of popular websites about HLHS identifies multiple opportunities for improvement, including increasing accountability by disclosing authorship and citing sources, enhancing readability by providing material that is understandable to readers with the full spectrum of educational background, and providing information in languages besides English, all of which would enhance health equity.

Shared decision making is the process in which the person, their representative, and health care professional share information with each other, participate in the decision-making process, and agree on a course of action. At present, very little is known about shared decision making (SDM) in medication management from the perspective of long-term care facility residents. The objective of this study was to identify residents’ beliefs, motivation, and aspects of the environment that facilitate or impede SDM.

A qualitative study was conducted using face-to-face semi-structured interviews, and data analysis was carried out using a thematic approach.

Six long-term care facilities in Sydney, Australia.

Thirty-one residents.

Enablers to resident involvement in SDM were resident beliefs in exercising their right to take part in medication-related decisions, preference to maintain control over decisions, and motivation to raise concern about medication. Residents were not motivated to be involved in SDM if they believed they had no control over life circumstance, perceived that medications were necessary, or experienced no problems with their medications. Participation in SDM was hindered by limitations in opportunities for resident involvement, engagement with staff and primary care physician to discuss issues related to medications, and continuity of care with their regular physician.

This study highlights that the residents’ beliefs in control over decisions and concerns about medication are a significant function of the SDM process. It is important that residents are given the choice to take part in SDM, their beliefs and values regarding SDM are understood, and the culture of the care facility respects residents’ right to participate in SDM.

Adolescents with CHD require transition to specialised adult-centred care. Previous studies have shown that adolescents’ knowledge of their medical condition is correlated with transition readiness. Three-dimensional printed models of CHD have been used to educate medical trainees and patients, although no studies have focused on adolescents with CHD. This study investigates the feasibility of combining patient-specific, digital 3D heart models with tele-education interventions to improve the medical knowledge of adolescents with CHD.

Adolescent patients with CHD, aged between 13 and 18 years old, were enrolled and scheduled for a tele-education session. Patient-specific digital 3D heart models were created using images from clinically indicated cardiac magnetic resonance studies. The tele-education session was performed using commercially available, web-conferencing software (Zoom, Zoom Video Communications Inc.) and a customised software (Cardiac Review 3D, Indicated Inc.) incorporating an interactive display of the digital 3D heart model. Medical knowledge was assessed using pre- and post-session questionnaires that were scored by independent reviewers.

Twenty-two adolescents completed the study. The average age of patients was 16 years old (standard deviation 1.5 years) and 56% of patients identified as female. Patients had a variety of cardiac defects, including tetralogy of Fallot, transposition of great arteries, and coarctation of aorta. Post-intervention, adolescents’ medical knowledge of their cardiac defects and cardiac surgeries improved compared to pre-intervention (p < 0.01).

Combining patient-specific, digital 3D heart models with tele-education sessions can improve adolescents’ medical knowledge and may assist with transition to adult-centred care.

Amongst patients with CHD, the time of transition to adulthood is associated with lapses in care leading to significant morbidity. The purpose of this study was to identify differences in perceptions between parents and teens in regard to transition readiness.

Responses were collected from 175 teen–parent pairs via the validated CHD Transition Readiness survey and an information request checklist. The survey was distributed via an electronic tablet at a routine clinic visit.

Parents reported a perceived knowledge gap of 29.2% (the percentage of survey items in which a parent believes their teen does not know), compared to teens self-reporting an average of 25.9% of survey items in which they feel deficient (p = 0.01). Agreement was lowest for long-term medical needs, physical activities allowed, insurance, and education. In regard to self-management behaviours, agreement between parent and teen was slight to moderate (weighted κ statistic = 0.18 to 0.51). For self-efficacy, agreement ranged from slight to fair (weighted κ = 0.16 to 0.28). Teens were more likely to request information than their parents (79% versus 65% requesting at least one item) particularly in regard to pregnancy/contraception and insurance.

Parents and teens differ in several key perceptions regarding knowledge, behaviours, and feelings related to the management of heart disease. Specifically, parents perceive a higher knowledge deficit, teens perceive higher self-efficacy, and parents and teens agree that self-management is low.

International guidelines on diabetes control strongly encourage the setting-up of therapeutic educational programs (TEP). However, more than half of the patients fail to control their diabetes a few months post-TEP because of a lack of regular follow-up by medical professionals. The DIAB-CH is a TEP associated with the follow-up of diabetic patients by the community pharmacist.

To compare the glycated hemoglobin (HbA1c) and body mass index (BMI) in diabetic patients of Control (neither TEP-H nor community pharmacist intervention), TEP-H (TEP in hospital only) and DIAB-CH (TEP-H plus community pharmacist follow-up) groups.

A comparative cohort study design was applied. Patients included in the TEP-H from July 2017 to December 2017 were enrolled in the DIAB-CH group. The TEP-H session was conducted by a multidisciplinary team composed of two diabetologists, two dieticians and seven nurses. The HbA1c level and the BMI (when over 30 kg/m2 at M0) of patients in Control (n = 20), TEP-H (n = 20) and DIAB-CH (n = 20) groups were collected at M0, M0 + 6 and M0 + 12 months. First, HbA1c and BMI were compared between M0, M6 and M12 in the three groups with the Friedman test, followed by the Benjamini-Hochberg post-test. Secondly, the HbA1c and BMI of the three groups were compared at M0, M6 and M12 using the Kruskal-Wallis test.

While no difference in HbA1c was measured between M0, M6 and M12 in the Control group, Hb1Ac was significantly reduced in both TEP-H and DIAB-CH groups between M0 and M6 (P = 0.0072 and P = 0.0034, respectively), and between M0 and M12 only in the DIAB-CH group (P = 0.0027). In addition, a significant decrease in the difference between the measured HbA1c and the target assigned by diabetologists was observed between M0 and M6 in both TEP-H and DIAB-CH groups (P = 0.0072 and P = 0.0044, respectively) but only for the patients of the DIAB-CH group between M0 and M12 (P = 0.0044). No significant difference (P > 0.05) in BMI between the groups was observed.

The long-lasting benefit on glycemic control of multidisciplinary group sessions associated with community pharmacist-led educational interventions on self-care for diabetic patients was demonstrated in the present study. There is thus evidence pointing to the effectiveness of a community/hospital care collaboration of professionals on diabetes control in primary care.

The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.

The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.

Findings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.

Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.