Tag: medical care

A patient perspective on enduring symptoms – the unmet need

Abstract:

This short paper illustrates the lived experience of individuals with severe enduring symptoms: chronic, often debilitating conditions for which no clear medical explanation currently exists. Drawing on qualitative interviews, the paper highlights the profound suffering, isolation, and lack of medical support experienced by this underserved population. It examines the systemic barriers to care, including stigma, the absence of follow-up services, and the traumatising nature of some healthcare encounters, which can lead to healthcare avoidance even in the face of potentially life-threatening symptoms. It concludes with a call for improved training for clinicians, increased capacity within NHS services, and ring-fenced funding for biomedical research.
Source: Katharine Cheston. A patient perspective on enduring symptoms – the unmet need. Future Healthcare Journal: Volume 12, Issue 4, 2025, 100465. ISSN 2514-6645. https://doi.org/10.1016/j.fhj.2025.100465. https://www.sciencedirect.com/science/article/pii/S2514664525002462 (Full text)

Telehealth as a care solution for homebound people: systematic review and meta-analysis of healthcare utilization, quality of life, and well-being outcomes

Abstract:

Homebound individuals residing in community settings with severe health conditions and disabilities could arguably benefit from telehealth interventions. However, the effectiveness of telehealth compared to in-person care remains underexplored, considering the diversity of these groups. This systematic review and meta-analysis aimed to evaluate the effectiveness of telehealth in reducing healthcare utilization and improving health-related quality of life (HRQOL) and well-being in homebound populations.

Adhering and expanding on a published protocol, we conducted comprehensive search across multiple databases: MEDLINE, Embase, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials (CENTRAL), Scopus, LILACS, and the Web of Science, with no restrictions on language or publication date, and experimental and quasiexperimental studies considered. Eleven independent reviewers were responsible for study selection, and three for data extraction. The methodological quality of the included studies was assessed using JBI checklists. A meta-analysis was then performed using Stata software, which reported standardized mean differences (SMDs) as the effect measure, with the quality of evidence evaluated using the GRADE approach. From an initial screening of 3289 articles, ten studies met our inclusion criteria, with eight suitable for meta-analysis. These studies encompassed data from 2245 participants.

Our findings revealed that telehealth interventions significantly reduced healthcare utilization (SMD: −0.49; 95% CI: −0.76 to −0.22; p < 0.01, GRADE: low certainty), significantly enhanced HRQOL (SMD: 0.18; 95% CI: 0.01 to 0.35; p = 0.04, GRADE: moderate certainty), and significantly improved well-being (SMD: −0.31; 95% CI: −0.47 to −0.15; p < 0.01, GRADE: moderate certainty) compared to in-person care. Thus, telehealth emerges as a viable alternative to conventional care, significantly reducing healthcare utilization and enhancing both HRQOL and well-being for homebound people.

These findings underscore the potential of telehealth to mitigate healthcare disparities and emphasize the need for accessible, equitable telehealth services codeveloped with end users and relevant stakeholders to save resources and maximize health outcomes for vulnerable populations in community settings.

Source: Pinero de Plaza, Maria Alejandra, Gulyani, Aarti, Bulto, Lemma N., Allande-Cussó, Regina, Pearson, Vincent, Lange, Belinda, Marin, Tania, Gebremichael, Lemlem, Brown, Shannon, Dafny, Hila, Sajeev, Shelda, Bulamu, Norma, Beleigoli, Alline, Nesbitt, Katie, McMillan, Penelope, Clark, Robyn, Tieu, Matthew, Kitson, Alison, Champion, Stephanie, Hines, Sonia, Hendriks, Jeroen M., Telehealth as a Care Solution for Homebound People: Systematic Review and Meta-Analysis of Healthcare Utilization, Quality of Life, and Well-Being Outcomes, Health & Social Care in the Community, 2025, 7224151, 32 pages, 2025. https://doi.org/10.1155/hsc/7224151 https://onlinelibrary.wiley.com/doi/full/10.1155/hsc/7224151 (Full text)

Specialised care for severely affected ME/CFS patients

Abstract:

Introduction: A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.

Methods: People with ME/CFS who were diagnosed according to the Canadian Consensus Criteria, who are aged 18 or above with severe or very severe ME/CFS according to the UK NICE guidelines, are eligible to stay at Røysumtunet. The study design is a retrospective review of medical records.

Results: Between June 2021 and June 2024, 24 ME/CFS patients, 20 women and 4 men with a confirmed diagnosis of ME, were admitted to the unit for stays of at least 3 months. Seventeen were very severely affected and 7 were severely affected. Ages ranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years. Seven patients showed significant improvement (p < 0.01), and five others showed some improvement. In total 50% improved (p < 0.01). Patients who improved were borderline significantly younger than those who did not, with a mean age of 30.3 (SD 12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The mean duration of disease was 2.3 (1.3) years for those who improved versus 6.7 (3.9) years for those who did not improve (p < 0.05).

Conclusion: This is the first report of a specialised care unit for the most severely ill ME/CFS patients. Fifty per cent of patients showed significant or partial improvement. The mechanisms behind these improvements are discussed but require further exploration in future studies.

Source: Saugstad, O. D., Sollie, M. G., Torp, H. A., & Storla, D. G. (2025). Specialised care for severely affected ME/CFS patients. Fatigue: Biomedicine, Health &amp; Behavior, 1–13. https://doi.org/10.1080/21641846.2025.2565101 https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2565101 (Full text)

Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis

Abstract:

Objective: To identify human responses (diagnostic foci) that shape the experience of living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and how they manifest throughout the course of the illness.

Methods: A qualitative meta-synthesis was conducted. Original studies exploring the experience of living with ME/CFS in adults with a confirmed diagnosis, published in English or Spanish between 1994 and June 2024, were included. The literature search was carried out in Medline/Medline In-Process, Embase, CINAHL, PsycINFO, SCI-EXPANDED, SSCI, SciELO, Lilacs, and Cuiden. Data analysis was based on the human responses (diagnostic foci) from the NANDA-I Nursing Diagnoses Classification, 2021–2023, with findings structured according to Fennell’s Four-Phase Model.

Results: A total of 42 articles were selected. Twenty human responses (diagnostic foci) and three classes of the NANDA-I Nursing Diagnoses Classification were identified, interwoven across the different phases of the model. Some responses were present throughout all phases, while others, such as Energy Balance and Health Self-Management, became particularly relevant from Phase 2 onwards. Phases 3 and 4 were characterised by losses and processes of subjective reconstruction, with diagnostic foci such as Sorrow, Spiritual Distress, and Personal Identity being predominant.

Conclusions: The identified human responses (diagnostic foci) highlight how the contested and chronic nature of ME/CFS profoundly shapes the lived experience of those affected. The model derived from this review provides a structured framework for targeted nursing interventions, aligned with the phase each individual is experiencing.

Source: Oter-Quintana, C., Esteban-Hernandez, J., Cuellar-Pompa, L., Gil-Carballo, C., Brito-Brito, P. R., Martín-García, A., … Alameda-Cuesta, A. (2025). Approach to nursing diagnoses of people with myalgic encephalomyelitis / chronic fatigue syndrome: a qualitative meta-synthesis. Fatigue: Biomedicine, Health &amp; Behavior, 1–32. https://doi.org/10.1080/21641846.2025.2522028 https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2522028

Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17-24 million patients worldwide, with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance. Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated; however, in-school healthcare provider education is limited.

To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on an ME/CFS-related topic. The efficacy of the program is demonstrated by the 2024-2025 first place scholarship winner’s essay, which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients.

For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student’s perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication.

Source: Agarwal P, Friedman KJ. Reframing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Biological Basis of Disease and Recommendations for Supporting Patients. Healthcare (Basel). 2025 Aug 5;13(15):1917. doi: 10.3390/healthcare13151917. PMID: 40805949. https://www.mdpi.com/2227-9032/13/15/1917 (Full text)

Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study

Abstract:

Background: Remote and digital consulting in primary care has rapidly expanded since March 2020. It is important to understand patient experiences, particularly for those living with complex long-term conditions, to identify how care can best be delivered, including within the remote space.

Aim: To explore the experiences of people living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia when consulting remotely in primary care.

Design & setting: Semi-structured interviews with patients living with CFS/ME and fibromyalgia in general practice in England.

Method: Semi-structured interviews were carried out with 13 participants. The interviews were transcribed and analysed thematically according to a Foucauldian theoretical framework.

Results: All participants highlighted needing to feel believed by clinicians. Many reported difficulties with telephone and online consulting owing to the lack of physical communication. Positive outcomes were reported when there was a good relationship with a clinician. Continuity in care and recognising the complexity of these conditions were also considered important.

Conclusion: This study allowed people living with CFS/ME and fibromyalgia to describe their experiences when consulting remotely. Participants highlighted needing to feel listened to and felt they benefited from an ongoing relationship with a clinician although this was difficult to achieve when consulting remotely. Some advantages of remote consulting were reported, particularly when symptoms were troublesome. Flexible access systems, with a range of consultation modalities or preferred clinician(s) availability, could improve healthcare encounters, particularly given the increased use of remote consulting in primary care.

Source: Leach H, Eccles A, Chew-Graham CA, Atherton H. Patient experiences of remote consulting with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia: a qualitative study. BJGP Open. 2025 Apr 24;9(1):BJGPO.2024.0079. doi: 10.3399/BJGPO.2024.0079. PMID: 39191480; PMCID: PMC12137999. https://pmc.ncbi.nlm.nih.gov/articles/PMC12137999/ (Full text)

Response to treatment in the Multiple Symptoms Study 3 trial

Letter:
Chistopher Burton and colleagues conducted an unblinded trial of a consultative intervention for 354 people with persistent physical symptoms but no identifiable “organic” cause. Patient Health Questionnaire-15 (PHQ-15) score, which is a brief, subjective, self-administered screen of severity of somatic complaints, was the primary outcome. This kind of trial design can be expected to produce modest positive outcomes, via expectation bias alone. No real-life, objective assessment of functioning was conducted.
The intervention involved up to four sessions with a general practitioner, offering patients “rational explanations” for their symptoms in the absence of known, falsifiable causes and helping patients to develop strategies for managing symptoms. Although the “rational explanations” are not described, they presumably did not include “organic” diseases or conditions.
Scores on the PHQ-15 range from 0 to 30. Recruited patients had scores from 10 to 20, indicating moderate severity. At the end of the study, the adjusted between-group difference of –1·82 did not reach the minimal clinically important difference of 2·3. The change is well within what would be expected from bias alone. The results therefore confirmed that the intervention was of limited, if any, practical benefit. However, the paper presents the findings as though they had shown the opposite.
Instead of the “rational explanations” promoted by the investigators, more straightforward and honest explanations—for example, we do not know what is causing symptoms—could easily have produced similar results. Patients desire resolution of symptoms and recovery of functions. The trial did not achieve this result. Post-intervention, participants continue to have an impaired quality of life and poor experiences of health care.
DT holds an academic position at the Center for Global Public Health at UC Berkeley, which is largely supported by crowdfunded donations directly to the university, many of them from patients with myalgic encephalomyelitis or chronic fatigue syndrome and related conditions that fall under the heading of persistent physical symptoms. JSC declares no competing interests.
Source: Joan S Crawford and David Tuller. Response to treatment in the Multiple Symptoms Study 3 trial.  The Lancet, Volume 405, Issue 10485, 1145 – 1146  https://link.springer.com/article/10.1007/s00421-025-05759-5 (Full text)

“I still can’t forget those words”: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses

Abstract:

Objectives: This research aimed to improve understanding of persisting impacts of patient-reported psychosomatic and psychiatric misdiagnoses on patients with systemic autoimmune rheumatic diseases (SARDs).
Methods: Mixed methods data from two SARDs cohorts were analysed (N = 1,543 and N = 1,853). Validated instruments and patient-designed questions were used to measure self-reported depression, anxiety and mental wellbeing, in addition to medical relationships and healthcare behaviours. Comparative tests were used to evaluate differences between patients reporting a psychosomatic and/or psychiatric misdiagnoses and other patients.
Results: Persisting adverse outcomes of perceived psychosomatic and psychiatric misdiagnoses were identified in multiple domains. This included >80% of patients reporting that it had damaged their self-worth, and 72% reporting that it still upset them. Patients reporting psychosomatic and/or psychiatric misdiagnoses had significantly lower mental wellbeing, and higher depression and anxiety levels (all p< 0.001), and lower levels of satisfaction with every aspect of medical care, compared with patients reporting no psychosomatic or psychiatric misdiagnoses. Psychosomatic and psychiatric misdiagnoses had varying associations with healthcare behaviours, including a significantly higher likelihood of under-reporting symptoms (p< 0.001) and healthcare avoidance (p= 0.012), but not with medication adherence (p= 0.2). Thematic analysis of qualitative data revealed that symptom under-reporting and healthcare avoidance often resulted from distrust and fear that symptoms would be disbelieved and misattributed again.
Conclusion: Patient-reported psychosomatic and psychiatric (mis)diagnoses are associated with persisting adverse impacts in multiple domains including mental health, medical relationships, self-worth, and some healthcare behaviours. Health services and clinicians should consider these potential adverse impacts on patients and offer support to reduce any persisting negative impacts.

Source: Melanie Sloan, Michael Bosley, Caroline Gordon, Thomas A Pollak, Farhana Mann, Efthalia Massou, Stephen Morris, Lynn Holloway, Rupert Harwood, Kate Middleton, Wendy Diment, James Brimicombe, Elliott Lever, Lucy Calderwood, Ellie Dalby, Elaine Dunbar, David D’Cruz, Felix Naughton, “I still can’t forget those words”: mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses, Rheumatology, 2025;, keaf115, https://doi.org/10.1093/rheumatology/keaf115 https://academic.oup.com/rheumatology/advance-article/doi/10.1093/rheumatology/keaf115/8042899 (Full text available as PDF file)

Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presents significant challenges for affected children and adolescents, their social environment, and treating physicians, due to its profound impact on quality of life and the lack of causal therapeutic approaches. One crucial aspect of care that has been missing for these patients is comprehensive education for both them and their social circles.

Objective: This study protocol aims to outline the goals, study design, execution, and evaluation of the subproject within the BAYNET FOR ME/CFS project. The focus is on developing online education programs for children and adolescents with ME/CFS, as well as for their parents, siblings, and school staff. These programs are designed to improve independent disease management, increase knowledge, and promote interaction with other affected individuals.

Methods: In phase I, the group-based online education programs were developed by a multidisciplinary team based on the ModuS concept created by the Competence Network for Patient Education (KomPaS). These programs were then piloted and finalized. Phase II involved recruiting participants and implementing the finalized programs. Given the restricted physical and cognitive capacities of the affected individuals, the patient education programs were exclusively designed in a digital format to facilitate participation. In phase III, the programs will be evaluated for acceptance, completeness, and participant satisfaction. The qualitative assessment will focus on individual expectations and benefits derived from the training. Phase IV will further assess the programs in terms of improvements in disease knowledge, health-related quality of life, life satisfaction, and family burden.

Results: The programs were developed, piloted, and finalized during phase I, which ran from December 2022 to May 2023. The pilot phase, from March to May 2023, led to adaptations in the program concept. In total, 8 patients and their parents, 5 siblings, and 59 school staff participated in the piloting. Adjustments were made to the format, content, duration, and schedule to better meet the needs of the affected individuals and their social circles. In phase II, participant recruitment for the patient education program took place from January to July 2023. The study successfully recruited 24 young patients with ME/CFS and their parents, along with 8 siblings and 51 school staff. Two program blocks for patients and parents and 2-3 blocks for siblings and school staff commenced in May 2023 and were completed within the same year. Phase III began after phase II and involves the evaluation of the programs, with the process expected to conclude by the end of 2024. Phase IV, planned for 2025-2026, will involve the rollout of the program to 150 children and their caretakers. This phase will focus on evaluating disease knowledge, health-related quality of life, life satisfaction, and family burden, as well as include longitudinal assessments.

Conclusions: The data aim to support the development of a comprehensive, interprofessional care model for children and adolescents with ME/CFS.

Source: Keicher F, Thomann J, Erlenwein J, Schottdorf M, Reiter NL, Scholz-Schwärzler NP, Vogel B, Warlitz C, Stojanov S, Augustin S, Goldbrunner L, Schanz L, Dodel V, Zipper C, Schiweck N, Jaeschke R, Saramandic M, Wiejaczka K, Eberhartinger M, Dettmer K, Hattesohl DBR, Englbrecht S, Behrends U, Spiegler J. Development and Implementation of an Online Patient Education Program for Children and Adolescents With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Their Parents, Siblings, and School Personnel: Protocol for the Prospective BAYNET FOR ME/CFS Study. JMIR Res Protoc. 2024 Nov 21;13:e54679. doi: 10.2196/54679. PMID: 39570662. https://www.researchprotocols.org/2024/1/e54679 (Full text)

Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations

Abstract:

Health data generated by apps and devices are increasingly popular and expected to affect various aspects of doctor-patient relationships. No longer confined to medically authorised and certified health technologies, a range of biomedical data-from heart rate to blood pressure or oxygen saturation-are captured and processed by consumer health devices. This article outlines different responses of physicians to patients collecting data with popular consumer devices and considers how the data may challenge or reify medical authority.

Based on semi-structured interviews with doctors and chronically ill patients in Germany from 2021 to 2023, we compare cases from diabetes, sleep disorders, cardiovascular conditions, obesity and ME/CFS and explore when, how and for what reasons different medical specialists consider patient-generated data (PGD) from consumer devices in outpatient settings.

Their response registers vary: whereas some physicians reject PGD that seem to compete with their diagnostic activities, others tolerate the data (collection), whereas still others more readily include them into their diagnostic practices. This suggests nuanced strategies for navigating the demarcation between accepting or rejecting ‘uninvited’ participation through PGD from consumer apps and devices.

Source: Augst AK, Lämmerhirt D, Schubert C. Patient-Generated Data as Interventions in Doctor-Patient Relationships? Negotiating (Un)Invited Participation in Medical Consultations. Sociol Health Illn. 2024 Nov 14. doi: 10.1111/1467-9566.13864. Epub ahead of print. PMID: 39540662. https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13864 (Full text)