“It seems like COVID-19 now is the only disease present on Earth”: living with a rare or undiagnosed disease during the COVID-19 pandemic

Halley, Meghan; Stanley, Talia; Maturi, Jay; Goldenberg, Aaron J.; Bernstein, Jonathan A.; Wheeler, Matthew T.; Tabor, Holly K.

doi:10.1038/s41436-020-01069-7

Cited by 26 publications

(54 citation statements)

References 21 publications

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“…Concerns about the access of patients without COVID‐19 to healthcare services sparked a new corpus of research in medicine to explore the challenges faced by patients with chronic diseases. According to these studies, the pandemic caused obstacles in access to essential health services because of the shift of resource allocation to COVID‐19 services, limits on access to essential and nonessential services and cancellation or postponement of elective surgeries 5,12–16 . In a study conducted by Halley et al, 12 some patients and their relatives stated problems in access to essential medical supplies because of shortages.…”

Section: Literature Reviewmentioning

confidence: 99%

“…According to these studies, the pandemic caused obstacles in access to essential health services because of the shift of resource allocation to COVID‐19 services, limits on access to essential and nonessential services and cancellation or postponement of elective surgeries 5,12–16 . In a study conducted by Halley et al, 12 some patients and their relatives stated problems in access to essential medical supplies because of shortages. The inability to access their doctors not only worsened their health condition but also led to a sense of feeling neglected by healthcare providers 12 .…”

Section: Literature Reviewmentioning

confidence: 99%

“…In a study conducted by Halley et al, 12 some patients and their relatives stated problems in access to essential medical supplies because of shortages. The inability to access their doctors not only worsened their health condition but also led to a sense of feeling neglected by healthcare providers 12 . These issues have negative impacts on patients' health status, 12,13 which is also recognised by healthcare professionals 14 .…”

Section: Literature Reviewmentioning

confidence: 99%

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Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

Aktas

2021

Health Expectations

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Objective The restructuring of healthcare provision for the coronavirus disease 2019 (COVID‐19) pandemic caused disruptions in access for patients with chronic or rare diseases. This study explores the experiences of patients with chronic or rare diseases in access to healthcare services in Turkey during the COVID‐19 pandemic. Methods Semi‐structured interviews were conducted with representatives (n = 10) of patient organisations (n = 9) based in Istanbul. Thematic analysis with an inductive approach was conducted to analyse the responses obtained through the interviews. Results The lack of clinical information at the beginning of the pandemic caused fear among patients with chronic or rare diseases. Patients experienced obstacles in access to healthcare services because of the overcrowding of hospitals with COVID‐19 patients. Some treatment procedures were cancelled or postponed by physicians. Of these procedures, some were medically vital for those patients, leading to or exacerbating further health problems. The most positive measures that patients identified were where the Social Security Institution introduced regulations to facilitate access to prescribed medicine for chronic patients. Information exchange between the doctors and their patients was important to alleviate the uncertainty and reduce the anxiety among patients. Discussion Access problems experienced by patients during the COVID‐19 pandemic were a complex mix of factors including shortages and physical barriers, but also perceptions of barriers. The findings of this study show that patient organisations can provide insights on disease‐specific experiences and problems that are very valuable to improve access to healthcare services to achieve the universal health coverage target. Hence, this study emphasises the inclusion of patient organisations in decision‐making processes during times of health crises. Public Contribution Representatives of patient organisations participated in the interviews.

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Section: Literature Reviewmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

See 1 more Smart Citation

Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

Aktas

2021

Health Expectations

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“…25 Our findings mirror those of research with other rare diseases. 26 Continuation of 'non-essential' services, such as community speech and language therapy, during periods of high resource would reduce the need for escalation of care to emergency levels, promote development and support parental well-being. The wider harms caused by society-wide 'lockdown' have been well summarised 11 and are reflected in our findings; fear and anxiety, displaced non-COVID care, social isolation, stress and loss of income were all reported.…”

Section: Discussionmentioning

confidence: 99%

“…25 Our findings mirror those of research with other rare diseases. 26 Continuation of ‘non-essential’ services, such as community speech and language therapy, during periods of high resource would reduce the need for escalation of care to emergency levels, promote development and support parental well-being.…”

Section: Discussionmentioning

confidence: 99%

COVID-19 pandemic experiences of parents caring for children with oesophageal atresia/tracheo-oesophageal fistula

Stewart

Smith

Eaton

et al. 2021

bmjpo

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PurposeThe COVID-19 pandemic has resulted in a global health crisis of unparalleled magnitude. The direct risk to the health of children is low. However, disease-containment measures have society-wide impacts. This study explored the pandemic experiences of parents of children with oesophageal atresia/tracheo-oesophageal fistula (OA/TOF) in the UK.DesignA phenomenological approach underpinned use of an asynchronous online forum method, in collaboration with a patient support group. Data were evaluated using thematic analysis.ResultsThe online forum ran between 7 November and 18 December 2020 with 109 participants.Pandemic experiences were divided into themes relating to healthcare and disease containment. Participants described positive experiences with remote healthcare but identified limitations. Delays and cancellations led to escalation of care to an emergency level, slower developmental progress and feelings of being abandoned by services. Inpatient care was perceived as safe but caring alone was emotionally and practically challenging. Disease containment themes revealed anxiety regarding health risks, ‘collateral’ damage to well-being because of isolation, and an impact on finances and employment. Parents described a transition from worry about direct health risks to concern about the impact of isolation on socialisation and development. A process of risk–benefit analysis led some to transition to a more ‘normal life’, while others continued to isolate. Benefits to their child’s health from isolation were reported.ConclusionsParents’ experiences of caring for a child with OA/TOF during the pandemic were varied. Rapid adoption of telehealth has demonstrated the enormous potential of remote healthcare delivery but requires refinement to meet the needs of the individual. Future pandemic planning should aim to retain community healthcare services to avoid escalation of care to an emergency, manage chronic and developmental concerns, and support parental well-being. Accurate and consistent disease-specific information is highly valued by parents. Third sector organisations are ideally positioned to support this.

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A qualitative evaluation of patient and parent experiences with an undiagnosed diseases program

Siebold,

Denton,

Hurst

et al. 2023

American J of Med Genetics Pt A

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Previous studies have explored patient experiences before being seen or at the beginning of their evaluation by undiagnosed diseases programs. This study provides additional insight into experiences after participation through in‐depth, qualitative evaluation, allowing for reflection of current practice and patient/parent needs. Semi‐structured interviews were conducted with patients and parents of patients seen at the University of Alabama at Birmingham (UAB)'s unique, clinically focused Undiagnosed Diseases Program (UDP). Analysis of the interviews was guided by a thematic approach. Participants had undergone a diagnostic odyssey before being evaluated by the UDP and remained hopeful for a diagnosis. They appreciated the opportunity to be seen by the UDP. However, perception of experiences differed based on whether evaluation by the UDP led to a diagnosis. Additionally, while participants were pleased with initial communication, they indicated that there were unmet needs regarding follow‐up. Patients and parents of patients believe that participation in an undiagnosed diseases program is the best option for diagnosis. The findings of this study provide a general overview of patient experiences and highlight strengths of the UAB UDP while also emphasizing areas to focus the improvement to optimize the benefit to patients and families with undiagnosed and rare diseases, which could be used helpful in the development of similar clinics.

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“It seems like COVID-19 now is the only disease present on Earth”: living with a rare or undiagnosed disease during the COVID-19 pandemic

Cited by 26 publications

References 21 publications

Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

Chronic and rare disease patients' access to healthcare services during a health crisis: The example of the COVID‐19 pandemic in Turkey

COVID-19 pandemic experiences of parents caring for children with oesophageal atresia/tracheo-oesophageal fistula

A qualitative evaluation of patient and parent experiences with an undiagnosed diseases program

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