Tag: illness management questionnaire

Chronic Disease Self-Management of Post-Acute Sequelae of COVID-19 Among Older Adults: A Mixed-Methods Analysis

Abstract:

Introduction: Approximately 20-30% of individuals who contract acute coronavirus disease (COVID-19) infection develop longer term complications of their initial infection, referred to as Post-Acute Sequelae of SARS-CoV-2 infection (PASC). PASC is characterized by chronic, varying symptomatology.

Methods: Using a mixed methods study design, we aimed to gain insight into individuals’ experience with PASC, including cognitive issues, fatigue, and sleep disturbances. We explored whether our previously developed application (app), aimed at improving self-management skills among individuals with chronic diseases, is relevant for individuals with PASC and gained information to adapt the app for individuals with PASC. The study included 19 individuals, aged 40 years and older, recruited from our research participant database, Nova Southeastern University clinics, and community locations. We included this age range because older adults are more likely to have comorbid conditions, allowing us to better understand the impact of COVID-19 infection in these individuals. Participants completed seven standardized self-report questionnaires online, and an individual semi-structured interview via videoconferencing. Quantitative data were assessed using descriptive statistics and calculating individuals’ scores in relation to norms. Qualitative data were analyzed using a thematic analysis approach. Triangulation of the data was accomplished by calculating correlations between participants’ responses on self-report scales and themes found in semi-structured interviews.

Results: Themes included disruption of everyday life, diverse physical symptoms, and cognitive problems including brain fog, fatigue, coping, and emotional upset. Quantitative analysis demonstrated that participants experienced high levels of fatigue, negative mood, cognitive problems, and overall reduction in health-related quality of life (HRQOL). Correlation analyses revealed that individual interview responses were related to participants’ self-report of symptoms on standard questionnaires.

Discussion: Findings indicate that self-report questionnaires may reflect the experience of individuals with PASC and its impact. Additionally, further efforts to expand our prior mobile app are warranted among individuals with PASC.

Source: Thomas-Purcell K, Davenport R, Ayala V, Purcell D, Ownby RL. Chronic Disease Self-Management of Post-Acute Sequelae of COVID-19 Among Older Adults: A Mixed-Methods Analysis. Clin Interv Aging. 2023 Apr 14;18:607-617. doi: 10.2147/CIA.S393732. PMID: 37082741; PMCID: PMC10112475. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10112475/

Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID

Abstract:

Background: Long-term health consequences following acute SARS-CoV-2 infection, referred to as post-COVID-19 condition or Long COVID, are increasing, with population-based prevalence estimates for adults at around 20%. Persons affected by Long COVID report various health problems, yet evidence to guide clinical decision making remains scarce.

Objective: The present study aimed to identify Long COVID research priorities using a citizen science approach and solely considering the needs of those affected.

Methods: This citizen science study followed an iterative process of patient needs identification, evaluation and prioritisation. A Long COVID Citizen Science Board (21 persons with Long COVID, and seven with myalgic encephalomyelitis/chronic fatigue syndrome) and a Long COVID Working Group (25 persons with Long COVID, four patients with myalgic encephalomyelitis/chronic fatigue syndrome and one relative) were formed. The study included four activities: three remote meetings and one online survey. First, Board members identified the needs and research questions. Second, Working Group members and persons affected by Long COVID (241 respondents, 85.5% with Long COVID, 14.5% with myalgic encephalomyelitis/chronic fatigue syndrome and 7.1% relatives) evaluated the research questions on a 1-5 Likert scale using an online survey. Then the Board gave feedback on this evaluation. Finally, Board members set the priorities for research through voting and discussion.

Results: Sixty-eight research questions were generated by the Board and categorised into four research domains (medicine, healthcare services, socioeconomics and burden of disease) and 14 subcategories. Their average importance ratings were moderate to high and varied from 3.41 (standard deviation = 1.16) for sex-specific diagnostics to 4.86 (standard deviation = 0.41) for medical questions on treatment. Five topics were prioritised: “treatment, rehabilitation and chronic care management”, “availability of interfaces for treatment continuity”, “availability of healthcare structures”, “awareness and knowledge among professionals” and “prevalence of Long COVID in children and adolescents”.

Conclusions: To our knowledge, this is the first study developing a citizen-driven, explicitly patient-centred research agenda with persons affected by Long COVID, setting it apart from existing multi-stakeholder efforts. The identified priorities could guide future research and funding allocation. Our methodology establishes a framework for citizen-driven research agendas, suitable for transfer to other diseases.

Source: Ziegler S, Raineri A, Nittas V, Rangelov N, Vollrath F, Britt C, Puhan MA. Long COVID Citizen Scientists: Developing a Needs-Based Research Agenda by Persons Affected by Long COVID. Patient. 2022 Apr 28. doi: 10.1007/s40271-022-00579-7. Epub ahead of print. PMID: 35478078. https://link.springer.com/article/10.1007/s40271-022-00579-7 (Full text)

Ways of coping with chronic fatigue syndrome: development of an illness management questionnaire

Abstract:

Chronic fatigue syndrome (CFS) is a disorder of uncertain aetiology, and there is uncertainty also about the appropriate way in which patients should manage the illness. An illness management questionnaire (IMQ) was designed to assess coping in CFS. This was completed by 207 patients, in parallel with the COPE scales (a general measure of coping that can be applied situationally), and measures of functional impairment, anxiety and depression.

The IMQ yielded four factors: maintaining activity, accommodating to the illness, focusing on symptoms and information-seeking. Scales based upon these factors together predicted 26, 27 and 22% of the variance in functional impairment, anxiety and depression, respectively, and each scale had significant relationships with relevant scales of the COPE, supporting the interpretation of the factors. It is suggested that the IMQ may be employed to relate ways of coping to outcomes in CFS, and to assess coping as a mediator of change in cognitive-behavioural interventions.

 

Source: Ray C, Weir W, Stewart D, Miller P, Hyde G. Ways of coping with chronic fatigue syndrome: development of an illness management questionnaire. Soc Sci Med. 1993 Aug;37(3):385-91. http://www.ncbi.nlm.nih.gov/pubmed/8356486