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Background: Medications are among the most common health interventions, with certain populations, such as individuals with spinal cord injury/dysfunction (SCI/D), commonly prescribed multiple medications. Consequently, adults with SCI/D often engage in activities related to medication self-management, but there are few comprehensive resources for this population. The objective of this study was to co-design the prototype of a toolkit to support medication self-management among adults with SCI/D.

Methods: We conducted a participatory multi-methods study, using the Good Things Foundation Pathfinder Model as a guide for the co-design process. Participants included adults with SCI/D, caregivers, and healthcare providers. Following the model’s three stages, we: (1) understood and defined the problem by conducting a scoping review, concept mapping study, and working group sessions; (2) created a prototype of the toolkit through working group sessions and website development meetings; and (3) tested the prototype through working group sessions.

Results: The working group consisted of 19 individuals, including 9 adults with SCI/D, 1 caregiver, and 9 healthcare providers. In Stage 1, we identified the need for a comprehensive medication self-management resource through a scoping review, brainstormed content and delivery methods, and thematized and prioritized the content into eight categories through a concept mapping study. The concept mapping study included 44 participants, including 21 adults with SCI/D, 11 caregivers, and 12 healthcare providers. In Stage 2, feedback on the content mapped onto five categories: first impressions, message and purpose, visual elements, layout and flow, and graphics. The name, MedManageSCI, was selected by the working group. Through an iterative process with the website development company, an online version of the toolkit prototype was created (www.medmanagesci.ca). In Stage 3, participants provided recommendations to improve the website’s functionality and navigation.

Conclusions: The co-design of the MedManageSCI prototype is a significant step toward addressing the medication self-management needs of adults with SCI/D. The implications of this work extend beyond SCI/D, highlighting the importance of tailored digital health resources for populations with complex healthcare needs. Future work is needed to refine the content, assess the feasibility, acceptability, and appropriateness of the toolkit, and examine outcomes related to medication self-management.

Background: A dramatic increase in the use of videoconferencing occurred as a response to the COVID-19 pandemic, including delivery of chronic disease management programs. With this increase, clients’ openness to and confidence in receiving any type of telehealth care has dramatically improved. However, the rapidity of the response was accomplished with little time to learn from existing knowledge and research.

Objective: The purpose of this scoping review was to identify features, barriers, and facilitators of synchronous videoconference interventions that actively engage clients in the management of chronic conditions.

Methods: Using scoping review methodology, MEDLINE, CINAHL, and 6 other databases were searched from 2003 onward. The included studies reported on structured, one-on-one, synchronous videoconferencing interventions that actively engaged adults in the management of their chronic conditions at home. Studies reporting assessment or routine care were excluded. Extracted text data were analyzed using thematic analysis and published taxonomies.

Results: The 33 included articles reported on 25 distinct programs. Most programs targeted people with neurological conditions (10/25, 40%) or cancer (7/25, 28%). Analysis using the Taxonomy of Every Day Self-Management Strategies and the Behavior Change Technique Taxonomy version 1 identified common program content and behavior change strategies. However, distinct differences were evident based on whether program objectives were to improve physical activity or function (7/25, 28%) or mental health (7/25, 28%). Incorporating healthy behaviors was addressed in all programs designed to improve physical activity or function, whereas only 14% (1/7) of the programs targeting mental health covered content about healthy lifestyles. Managing emotional distress and social interaction were commonly discussed in programs with objectives of improving mental health (6/25, 24% and 4/25, 16%, respectively) but not in programs aiming at physical function (2/25, 8% and 0%, respectively). In total, 13 types of behavior change strategies were identified in the 25 programs. The top 3 types of strategies applied in programs intent on improving physical activity or function were feedback and monitoring, goals and planning, and social support, in contrast to shaping knowledge, regulation, and identity in programs with the goal of improving mental health. The findings suggest that chronic condition interventions continue to neglect evidence that exercise and strong relationships improve both physical and mental health. Videoconference interventions were seen as feasible and acceptable to clients. Challenges were mostly technology related: clients’ comfort, technology literacy, access to hardware and the internet, and technical breakdowns and issues. Only 15% (5/33) of the studies explicitly described compliance with health information or privacy protection regulations.

Conclusions: Videoconferencing is a feasible and acceptable delivery format to engage clients in managing their conditions at home. Future program development could reduce siloed approaches by adding less used content and behavior change strategies. Addressing client privacy and technology issues should be priorities.

Background: Fatigue in Parkinson's disease (PD) is a common, debilitating symptom often overlooked in research and clinical practice. Effective interventions are needed to mitigate its impact on people with PD.

Objective: This pilot study evaluated the feasibility of the individual videoconference version of the Packer Managing Fatigue program for people with PD and explored its preliminary effectiveness versus usual care to inform the design of a definitive trial. Here we report on the second objective.

Methods: A two-arm, assessor-masked, randomized controlled pilot study recruited participants with PD who experience severe fatigue, have English proficiency, and internet access. Outcome measures included occupational performance, satisfaction with performance, occupational balance, fatigue impact, quality of life, and sleep. Mixed repeated-measures ANOVA and non-parametric tests were used for analysis.

Results: Mixed-design ANOVA (N = 25) showed an exploratory trend toward significant for the Time x Group interaction effect differences in satisfaction with performance between groups over time (p = 0.09). Paired t-tests within the intervention group indicated significant improvement in satisfaction with performance (p = 0.04). The effect size for this outcome was moderate. Small to moderate effect sizes were observed for occupational balance, occupational performance, and subscales of the Multidimensional Fatigue Inventory. Other measures showed negligible effects.

Conclusions: The results provide preliminary evidence of the program's benefits for people with PD. Larger, more rigorous studies are needed to confirm its effectiveness. Despite the small sample size and challenges posed by COVID-19, this study offers valuable insights into recruitment strategies and effect sizes to inform future trial designs.

Objective: This study describes patterns of self-management ease and difficulty among older adults with long-term health conditions and the associations with gender, level of education, number of conditions, depression and/or health status.

Materials and methods: Cross-sectional data were collected between 2021–2022 in a municipality in northern Sweden. The survey included demographic and health-related questions. To assess self-management ease or difficulty and symptoms of depression, the Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and the Geriatric Depression Scale were used. 516 older adults between 72–73 years of age with long-term health conditions were included. Descriptive statistics and logistic regression were used to describe patterns of self-management ease and difficulty and to examine which factors were associated with self-management difficulty.

Results: Most older adults did not experience self-management difficulty. There were, however, differences between the seven PRISM-CC domains. The Internal domain (managing negative emotions and stress) had the highest percentage (25.39%) of older adults with self-management difficulty. In all domains, there was also a subgroup of individuals (n = 26) that had noticeably lower PRISM-CC scores (more difficulty). A strong association between having depressive symptoms or having poor health status and self-management difficulty was found.

Conclusion: This study highlights the need for regular mental health screenings and individualized self-management support for older adults. Future research should explore intervention strategies that integrate mental health support into self-management programs for individuals with long-term health conditions.

Background: Self-management is internationally recognized as important to maintain independence, quality of life and to minimize the risk of poor health outcomes, especially among persons with multi-morbidity. Self-management can be especially challenging for older adults, who have higher rates of multi-morbidity and experience diverse impacts of long-term health conditions on everyday life. Good measures of self-management are currently lacking. The Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is a new, generic, multidimensional measure of self-perceived ease or difficulty with self-management, that overcomes many of the limitations of existing measures.

Objectives: To test the structural validity and test-retest reliability of the Swedish version of the PRISM-CC among seventy-year-olds with long-term health conditions.

Methods: Translation of PRISM-CC items into Swedish followed the Patient-Reported Outcome (PRO) Consortium process. Survey data (n = 516 Swedish seventy-year-olds with ≥1 long-term health condition) was used to assess structural validity of the 36-item PRISM-CC using multidimensional item response theory (IRT) models. Test-retest reliability was assessed on a subsample of 58 individuals using intra-class correlation coefficient (ICC) and Bland-Altman Plots.

Results: The Swedish PRISM-CC demonstrated good internal consistency with Cronbach’s alpha >0.8 for all domains, and good fit to a graded response IRT model (RMSEA 0.034, SRMSR 0.050, CFI 0.952 and TLI 0.945). All 36 items had standardized loadings >0.7. ICC showed moderate to good test-retest reliability for all seven domains. The Bland-Altman plots showed minimal bias and good test-retest agreement for all domains.

Conclusion: The Swedish PRISM-CC showed good structural validity and test-retest reliability in this sample of relatively healthy seventy-year-olds with long-term health condition(s). Further validation in a population with more severe health issues is needed.

Fatigue is common, but under-recognized in Parkinson’s disease (PD), with limited treatment options. The aim of this study is to explore the experience of people with PD (PwPD) regarding content and delivery of the individual Packer Managing Fatigue program. This mixed-method study (n = 12) was conducted concurrently with a pilot randomized controlled trial. Data were collected using questionnaires, interviews, and focus groups. Five themes emerged: the program is helpful; the program has strengths; areas for improvement; individual online delivery is feasible; and more support from occupational therapist would be helpful. Quantitative findings confirmed feasibility with high ratings on questionnaires and confidence to use learned strategies. The findings inform future implementation of the Packer Managing Fatigue program and contribute to understanding the needs of PwPD. Future studies might explore program’s effectiveness as stand-alone treatment or in combination with other approaches. Tailoring fatigue programs to PwPD’s unique needs and characteristics of PD fatigue is suggested.

Background: Adults with spinal cord injury/dysfunction (SCI/D) face challenges with medications they take to manage their secondary conditions (e.g., pain, urinary tract infections, autonomic dysreflexia). With many healthcare providers typically involved in care, there are additional challenges with care fragmentation and self-management. Prior research emphasized the desire for more support with medication self-management among this population.

Objective: To explore what content should be included in a medication self-management resource (i.e., toolkit) for adults with SCI/D, as well as considerations for delivery from the perspectives of adults with SCI/D, caregivers, healthcare providers, and representatives from community organizations.

Methods: A concept mapping study was conducted. Participants took part in one or more of three activities: brainstorming; sorting and rating; and mapping. Participants generated ideas about the content to include in a medication self-management toolkit. Participants sorted the statements into conceptual piles and assigned a name to each. All statements were rated on a five-point Likert-type scale on importance and realistic to include in the toolkit. Participants decided on the final cluster map, rearranged statements, and assigned a name to each cluster to create visual representations of the data.

Results: Forty-four participants took part in this study. The final map contained eight clusters: 1) information-sharing and communication; 2) healthcare provider interactions and involvement; 3) peer and community connections; 4) supports and services for accessing prescription medications and medication information; 5) information on non-prescription medication and medication supplies; 6) safety and lifestyle considerations; 7) general medication information; and 8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was rated as the most important and realistic to include in the toolkit.

Conclusions: Given the limited tools to help adults with SCI/D with managing their medications, there is great potential to better support this population across all areas of medication self-management.