Tag: patient experience

Re-visiting professional ethics in psychotherapy: Reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis / chronic fatigue syndrome and ‘medically unexplained symptoms’

Abstract:

Following years of debate over the effectiveness of cognitive behavioural therapy for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), public health bodies in the UK and beyond have determined that no psychotherapy is clinically proven for this patient group.

In the field of ME/CFS and the wider arena of ‘medically unexplained symptoms’ (MUS), patient survey data and qualitative research capturing patient experiences and psychotherapist attitudes suggest that therapeutic practice may sometimes fall short of required ethical standards. This raises questions about how psychotherapists can safely support, as opposed to treat, people with these debilitating conditions.

We consider four ethical principles that feature throughout psychotherapists’ codes of practice, those of respect, competence, responsibility, and integrity, and discuss examples of good and poor practice in this arena as evinced by recent empirical literature.

Following this, we offer a variety of suggestions to help strengthen ethical psychotherapy practice among patients with ME/CFS and other MUS. In terms of practitioner education, we recommend greater emphasis on humility and reflexive practice, exploration of personal as well professional ethics, and integration of patient expertise-by-experience, accompanied with latest evidence, into foundational and on-going training.

In terms of practice, we suggest consideration of formalized patient-focused feedback systems and greater transparency visà-vis patient access to clinical notes. Finally, we underline the importance of elevating patients from mere subjects to co-producers of psychotherapy research.

Source: Joanne Hunt, Charlotte Blease. Re-visiting professional ethics in psychotherapy: Reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis / chronic fatigue syndrome and ‘medically unexplained symptoms.’ OSF preprints. https://osf.io/2m9eb/ (Full text)

Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire

Abstract:

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Effective tools to assess functional capacity (FC) are severely lacking which has significant consequences for timely diagnosis, assessments for patient disability benefits and assessing the impact and effectiveness of interventions.

In interventional research the inability to assess FC can result in an incomplete assessment of the potential effect of the intervention. Specifically of concern is that if an intervention is effective in reducing symptom load, patients may increase their activity level to reach a pre-intervention symptom load. Thus, if FC is not accurately assessed, beneficial treatment outcomes may be missed.

To address this issue, using extensive, repeated patient feedback we have developed a new questionnaire, FUNCAP, to achieve optimal FC assessment in ME/CFS patients.

The questionnaire covers eight domains and activity types: A. Personal hygiene / basic functions, B. Walking / movement, C. Being upright, D. Activities in the home, E. Communication, F. Activities outside the home, G. Reactions to light and sound, and H. Concentration.

Through five rounds of anonymous web-based surveys and a further test – retest validation round, two versions of the questionnaire were developed; a longer version comprising 55 questions (FUNCAP55) to improve diagnostic and disability benefit/ insurance FC assessments and a shorter version (FUNCAP27) for interventional research and less extensive FC assessments. FUNCAP may also be useful in other conditions where fatigue and PEM is present, such as Long Covid.

Source: Sommerfelt, K.; Schei, T.; Seton, K.A.; Carding, S.R. Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire. Preprints 2023, 2023092091 https://www.preprints.org/manuscript/202309.2091/v1 (Full text available as PDF file) Final version https://www.mdpi.com/2077-0383/13/12/3486 (Full text)

The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce

Abstract:

The NIH-funded RECOVER study is collecting clinical data on patients who experience a SARS-CoV-2 infection. As patient representatives of the RECOVER Initiative’s Mechanistic Pathways task force, we offer our perspectives on patient motivations for partnering with researchers to obtain results from mechanistic studies. We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of SARS-CoV-2 infection (PASC), which includes ‘long COVID,’ through contrasting objective and subjective narratives.

Long COVID’s prevalence served as a call to action for patients like us to become actively involved in efforts to understand our condition. Patient-centered and patient-partnered research informs the balance between urgency and robust mechanistic research. Results from collaborating on protocol design, diverse patient inclusion, and awareness of community concerns establish a new precedent in biomedical research study design. With a public health matter as pressing as the long-term complications that can emerge after SARS-CoV-2 infection, considerate and equitable stakeholder involvement is essential to guiding seminal research. Discussions in the RECOVER Mechanistic Pathways task force gave rise to this commentary as well as other review articles on the current scientific understanding of PASC mechanisms.

Source: Kim C, Chen B, Mohandas S, Rehman J, Sherif ZA, Coombs K; RECOVER Mechanistic Pathways Task Force; RECOVER Initiative. The importance of patient-partnered research in addressing long COVID: Takeaways for biomedical research study design from the RECOVER Initiative’s Mechanistic Pathways taskforce. Elife. 2023 Sep 22;12:e86043. doi: 10.7554/eLife.86043. PMID: 37737716; PMCID: PMC10516599. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10516599/ (Full text)

Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach

Abstract:

Background: Current approaches to support patients living with post-COVID condition, also known as Long COVID, are highly disparate with limited success in managing or resolving a well-documented and long-standing symptom burden. With approximately 2.1 million people living with the condition in the UK alone and millions more worldwide, there is a desperate need to devise support strategies and interventions for patients.

Methods: A three-round Delphi consensus methodology was distributed internationally using an online survey and was completed by healthcare professionals (including clinicians, physiotherapists, and general practitioners), people with long COVID, and long COVID academic researchers (round 1 n = 273, round 2 n = 186, round 3 n = 138). Across the three rounds, respondents were located predominantly in the United Kingdom (UK), with 17.3-15.2% (round 1, n = 47; round 2 n = 32, round 2 n = 21) of respondents located elsewhere (United States of America (USA), Austria, Malta, United Arab Emirates (UAE), Finland, Norway, Malta, Netherlands, Iceland, Canada, Tunisie, Brazil, Hungary, Greece, France, Austrailia, South Africa, Serbia, and India). Respondents were given ∼5 weeks to complete the survey following enrolment, with round one taking place from 02/15/2022 to 03/28/22, round two; 05/09/2022 to 06/26/2022, and round 3; 07/14/2022 to 08/09/2022. A 5-point Likert scale of agreement was used and the opportunity to include free text responses was provided in the first round.

Findings: Fifty-five statements reached consensus (defined as >80% agree and strongly agree), across the domains of i) long COVID as a condition, ii) current support and care available for long COVID, iii) clinical assessments for long COVID, and iv) support mechanisms and rehabilitation interventions for long COVID, further sub-categorised by consideration, inclusion, and focus. Consensus reached proposes that long COVID requires specialised, comprehensive support mechanisms and that interventions should form a personalised care plan guided by the needs of the patients. Supportive approaches should focus on individual symptoms, including but not limited to fatigue, cognitive dysfunction, and dyspnoea, utilising pacing, fatigue management, and support returning to daily activities. The mental impact of living with long COVID, tolerance to physical activity, emotional distress and well-being, and research of pre-existing conditions with similar symptoms, such as myalgic encephalomyelitis, should also be considered when supporting people with long COVID.

Interpretation: We provide an outline that achieved consensus with stakeholders that could be used to inform the design and implementation of bespoke long COVID support mechanisms.

Source: Owen R, Ashton REM, Ferraro FV, Skipper L, Bewick T, Leighton P, Phillips BE, Faghy MA. Forming a consensus opinion to inform long COVID support mechanisms and interventions: a modified Delphi approach. EClinicalMedicine. 2023 Aug 9;62:102145. doi: 10.1016/j.eclinm.2023.102145. PMID: 37599906; PMCID: PMC10432807. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10432807/ (Full text)

Long Covid requires a global response centred on equity and dialogue

Abstract:

Long Covid, or Post-Covid Conditions, is a global health problem. Yet we know strikingly little about the different experiences of Long Covid patients cross-nationally. To address this shortcoming, we conducted an online survey of Long Covid patients active on social media in the U.S. (n = 334, October to December 2021) and Brazil (n = 144, January to April 2022). Our analysis of short answer responses indicates patient dissatisfaction with medical care provided for Long Covid in both the U.S. and Brazil. For Long Covid patients in Brazil, there were additional concerns raised about the lack of local expertise about their condition.

Based on these results, we urge policymakers to expand the education of medical professionals in order to raise awareness of Long Covid. Experts in the Global North should also be encouraged to engage in dialogue with patient groups and experts in the Global South, in order to better understand how local contexts shape the experience of Long Covid.

Source: Au L, Capotescu C, Curi A, Gonçalves Leonel da Silva R, Eyal G. Long Covid requires a global response centred on equity and dialogue. Glob Health Action. 2023 Dec 31;16(1):2244757. doi: 10.1080/16549716.2023.2244757. PMID: 37581581; PMCID: PMC10431739. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10431739/ (Full text)

Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences

Abstract:

Background: Digital assistive technologies have the potential to address the pressing need for adequate therapy options for patients with long COVID (also known as post-COVID-19 condition) by enabling the implementation of individual and independent rehabilitation programs. However, the involvement of the target patient group is necessary to develop digital devices that are closely aligned to the needs of this particular patient group.

Objective: Participatory design approaches, such as cocreation, may be a solution for achieving usability and user acceptance. However, there are currently no set methods for implementing cocreative development processes incorporating patients. This study addresses the following research questions: what are the tasks and challenges associated with the involvement of patient groups? What lessons can be learned regarding the adequate involvement of patients with long COVID?

Methods: First, a literature review based on a 3-stage snowball process was conducted to identify the tasks and challenges emerging in the context of the cocreation of digital assistive devices and services with patient groups. Second, a qualitative analysis was conducted in an attempt to extract relevant findings and criteria from the identified studies. Third, using the method of theory adaptation, this paper presents recommendations for the further development of the existing concepts of cocreation in relation to patients with long COVID.

Results: The challenges of an active involvement of patients in cocreative development in health care include hierarchical barriers and differences in the levels of specific knowledge between professionals and patients. In the case of long COVID, patients themselves are still inexperienced in dealing with their symptoms and are hardly organized into established groups. This amplifies general hurdles and leads to questions of group identity, power structure, and knowledge creation, which are not sufficiently addressed by the current methods of cocreation.

Conclusions: The adaptation of transdisciplinary methods to cocreative development approaches focusing on collaborative and inclusive communication can address the recurring challenges of actively integrating patients with long COVID into development processes.

Source: Dalko K, Kraft B, Jahn P, Schildmann J, Hofstetter S. Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences. J Med Internet Res. 2023 Aug 15;25:e46297. doi: 10.2196/46297. PMID: 37581906. https://www.jmir.org/2023/1/e46297 (Full text)

Exploring the Complexities of Long Covid: An Analysis of Illness Narratives through Antonovsky’s Sense of Coherence Theory

Abstract:

Long Covid is a chronic illness resulting from Covid-19 infection, characterized by persistent symptoms over an extended period. Given the significant impact on affected individuals’ lives, it is crucial to understand and interpret their experiences. Therefore, comprehending how affected individuals understand, manage, and derive meaning from their lives becomes essential.

Antonovsky’s Sense of Coherence (SOC) theory (1987), compromising Comprehensibility, Manageability, and Meaningfulness, can serve as a foundation for this exploration. SOC is shaped by life experiences and aids in finding effective coping strategies. However, the expression of SOC among people with long Covid has not yet been studied. Therefore, this study examines how people with long Covid negotiate the three SOC components in illness narratives.

Thematic analysis of 34 online collected illness narratives from Dutch individuals with long Covid revealed 13 themes interpreted in relation to SOC components. The findings include three themes that were interpreted as reflecting the Comprehensibility component, displaying an understanding of long Covid and its’ impact, and experiences of social support.

Three themes fall under Manageability by describing maintaining control and normality through seeking professional help and adapting to the new state of health. Meaningfulness was characterized by two themes, expressing recognition of values and a sense of direction for maintaining motivation in recovery. Five themes were interpreted as barriers to SOC components, as participants mentioned experiencing misunderstanding and invalidations, medical and public uncertainty, relinquishing enjoyable activities, and struggles in progress and illness acceptance. These results can enhance understanding of long Covid among individuals and assist healthcare practitioners tailor interventions to their specific needs.

Source: Estelle Gosch. Exploring the Complexities of Long Covid: An Analysis of Illness Narratives through Antonovsky’s Sense of Coherence Theory. Master Thesis Positive Clinical Psychology and Technology, Department of Psychology, Health, and Technology, Faculty Behavioural, Management, and Social Sciences, University of Twente. http://essay.utwente.nl/95672/1/Gosch_MA_BMS.pdf (Full text)

A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome

Abstract:

Whilst chronic fatigue syndrome (CFS) has been widely researched amongst women, studies investigating how men experience a CFS diagnosis is limited.

This study utilised an interpretative phenomenological approach to interview five men who have a medical diagnosis of CFS.

Six themes emerged to demonstrate the participants’ experiences prior to, during and after obtaining their CFS diagnosis.

Findings revealed that participants were initially reluctant to accept their condition, confounded by their perception that symptoms compromised their sense of masculinity. They also felt that healthcare professionals had limited recognition of CFS leading them to seek social support and legitimisation from other sources.

The struggle to come to terms with a different lifestyle and sense of masculinity prevailed. Such knowledge could be effectively utilised by researchers, practitioners and employers to facilitate an increased understanding of male accounts of the condition and more bespoke interventions where required.

Source: Snell GE, Seage CH, Mercer J. A phenomenological study on the lived experience of men with Chronic Fatigue Syndrome. J Health Psychol. 2023 Jul 17:13591053231186385. doi: 10.1177/13591053231186385. Epub ahead of print. PMID: 37455618. https://pubmed.ncbi.nlm.nih.gov/37455618/

 

Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England

Abstract:

Purpose: Female adults diagnosed with myalgia encephalomyelitis (ME) and chronic fatigue syndrome (CFS) often are marginalised because their condition is not fully recognised by medical and health-care systems. The purpose of this small-scale study was to explore the lived experiences of adult females with ME/CFS in England in relation to contributing factors that impact their occupational participation.

Design/methodology/approach: A qualitative study design using semi-structured interviews was used with nine female adult participants who were selected using a purposive sampling method. A Thematic Networks tool was used to analyse data.

Findings: Four organising themes were identified: impairment-, person-, environment- and society-related factors. Two global themes, invisibility and diagnosis stigma, were identified as the overarching issues that female adults with ME/CFS face in occupational participation.

Originality/value: Many of the issues that contribute to lack of participation by this population are associated with environmental factors which are secondary to their illness.

Source: Khalafbeigi, M., Yazdani, F., Genis, F., Hess, K.Y. and Kirve, S. (2023), “Invisibility and diagnosis stigma: disabling factors for female adults with myalgia encephalomyelitis (ME)/chronic fatigue syndrome (CFS) in a small-scale qualitative study in England”, Irish Journal of Occupational Therapy, Vol. ahead-of-print No. ahead-of-print. https://doi.org/10.1108/IJOT-08-2022-0032 https://www.emerald.com/insight/content/doi/10.1108/IJOT-08-2022-0032/full/html (Full text)

Post-COVID-19 Syndrome in Non-Hospitalized Individuals: Healthcare Situation 2 Years after SARS-CoV-2 Infection

Abstract:

Although “post-COVID-19 syndrome” (PCS) is reported to be common even in non-hospitalized individuals, long-term information on symptom burden, healthcare needs, utilization, and satisfaction with healthcare is scarce. The objectives of this study were to describe symptom burden, healthcare utilization and experiences with the healthcare offered for PCS in a German sample of non-hospitalized persons 2 years after SARS-CoV-2 infection.

Individuals with past COVID-19 confirmed by positive polymerase chain reaction testing were examined at the University Hospital of Augsburg from 4 November 2020 to 26 May 2021 and completed a postal questionnaire between 14 June 2022 and 1 November 2022. Participants who self-reported the presence of fatigue, dyspnea on exertion, memory problems or concentration problems were classified as having PCS.

Of the 304 non-hospitalized participants (58.2% female, median age 53.5), 210 (69.1%) had a PCS. Among these, 18.8% had slight to moderate functional limitations. Participants with PCS showed a significantly higher utilization of healthcare and a large proportion complained about lacking information on persistent COVID-19 symptoms and problems finding competent healthcare providers.

The results indicate the need to optimize patient information on PCS, facilitate access to specialized healthcare providers, provide treatment options in the primary care setting and improve the education of healthcare providers.

Source: Kirchberger I, Meisinger C, Warm TD, Hyhlik-Dürr A, Linseisen J, Goßlau Y. Post-COVID-19 Syndrome in Non-Hospitalized Individuals: Healthcare Situation 2 Years after SARS-CoV-2 Infection. Viruses. 2023 Jun 5;15(6):1326. doi: 10.3390/v15061326. PMID: 37376625; PMCID: PMC10303962. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10303962/ (Full text)