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Background: Stem cell transplantation is a potentially life-saving intervention for patients with blood cancer. Research suggests that there are existing disparities in access, care and treatment experiences, with patients identifying with a minority ethnic heritage reporting greater disadvantage compared to patients from white British, Irish or Northern European backgrounds. Although we know that the COVID-19 pandemic has been challenging for patients, less is known about the experiences of patients from specific ethnic communities. Method(s): In this research, we undertook 1-1, semi-structured interviews with eight patients within the stem cell transplant pathway who identify with a minority ethnic background. Interviews took place online, between May and November 2021. The interview questions explored views on aspects of the pandemic, including access and experience of care delivery, intervention, mental health and financial impact. Interviews were transcribed verbatim and analysed using reflexive thematic analysis. Result(s): The majority of patient participants were female (75%), and identified with a Black African or Caribbean heritage (75%). Four themes were identified from the data: (1) 'Lack of suitable donors' described the challenges of finding a stem cell donor and the importance of raising awareness of stem cell donation specifically within minority ethnic communities;(2) 'Experiences of care' explored patients' experiences of the healthcare system from pre-diagnosis to post-treatment, including how the COVID-19 pandemic had made some aspects of care easier but acted to disrupt others;(3) 'Intense and unpredictable process' described the nature of living with blood cancer and how this has impacted upon patients' lives including the extent to which they had been able to access and make use of advice to help keep them safe during the pandemic;and (4) 'Coping mechanisms' identified the factors which helped patients' to understand and adjust to living with their diagnosis and the treatment process. Conclusion(s): Patients in the stem cell transplant pathway often experience intense treatment regimens, debilitating symptoms and long hospital stays, which has a significant impact on their lives. Minority ethnic patients describe facing additional challenges in relation to health inequalities both within and outside of the pandemic. Seeking support from family, peers or community organisations can help buffer the negative impacts of living with blood cancer and multiple disadvantages, but such support was more difficult to access during the pandemic. This had psychological consequences for patients who are already within an intense emotional journey. Pandemic recovery plans should address mental health support as a priority.
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Background/AimsCOVID-19 lockdown affected access to clinical care for manyvulnerable patients, including those with inflammatory arthritis (IA). Italso had the potential to alter self-management behaviours. Thesechanges could in turn impact mental health, especially given that IApatients are already at higher risk of mental health disorders. Thus, theaims of this study were to determine how IA care and self-management were affected by lockdown and assess the impact of thesechanges on disease outcomes and mental health.MethodsOnline questionnaires were completed by 338 participants betweenJune and July 2020. The questionnaires assessed demographics, IAcondition, IA self-management, COVID-19 clinical information, qualityof life, and mental health. Visual analogue scale (VAS) scores forpatient global assessment (PGA) of disease activity, pain, fatigue, andemotional distress were completed relating to the previous week andretrospectively for pre-lockdown (March) and early-lockdown (April).Improvement/worsening in each VAS was considered as a change of10 points or more from pre-lockdown to the current rating. Linearregressions were conducted to determine factors associated withworse outcomes, controlling for potential confounders including selfreported pre-lockdown status.ResultsMean VAS scores worsened during lockdown for all outcomemeasures, with over half reporting a more than 10-point worsening(Table 1). Changes to clinical care affected 87% of patients. The mostcommonly affected services were hospital outpatient appointments(77%), GP appointments (59%), and blood tests (53%). Changes toclinical care were significantly associated with worse PGA (b = 8.95, p=0.01), pain (b = 7.13, p=0.05), fatigue (b = 17.01, p<0.00) andemotional distress (b = 12.78, p<0.01). Regarding self-management, 64% of patients reported changes to diet while 51% reduced physicalactivity. Change in diet was not significantly associated with any of theoutcomes, whereas physical activity was associated with PGA (b=-2.42, p<0.01), pain (b=-2.43, p<0.01), fatigue (b=-2.5, p < 0.01), andemotional distress (b=-2.41, p<0.01).ConclusionMost patients (87%) had at least one area of clinical care affected bythe lockdown. These changes in IA clinical care were associated withworse disease outcomes across all measures and greater emotionaldistress. In self-management, reduced physical activity was associated with worse outcomes in all physical and mental healthmeasures.
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Background/AimsInflammatory arthritis (IA) patients have been identified as being atgreater risk of severe illness from COVID-19. It is likely that lockdownrestrictions enforced by the UK government in response to the COVID-19 pandemic, and subsequent changes made to healthcare provisions, could impact patients' abilities to effectively manage theircondition. The aim of this study was to qualitatively explore the impact of COVID-19 and lockdown on self-management behaviours andhealthcare provision in people with IA.MethodsSemi-structured interviews were conducted with 21 patients with IAfrom across the UK (as part of a larger longitudinal survey studyexploring the impact of COVID-19 on health-related quality of life forpeople with IA). Participants who gave consent for contact, followingthe completion of the baseline survey study, were approached to takepart in the qualitative interviews. The interview schedule wasdeveloped with a Patient Research Partner and consisted of eightmain questions to explore participants' experiences of the COVID-19pandemic, including the impact of COVID-19 on their self-management behaviours and access to healthcare services. The interviewswere conducted via telephone and were recorded and transcribedbefore being analysed using inductive thematic analysis.ResultsParticipants were aged between 24-72 (mean age 50.0, SD 15.6) andwere mostly female (71%) and White British (86%). Four main themeswere identified: impact of COVID-19 on medication adherence, impactof COVID-19 on physical activity, impact of COVID-19 on diet, andimpact of COVID-19 on healthcare access. Subthemes focused onpositive and negative changes made to these areas, as well asbehaviours which remained consistent. Some participants expressedthat the lockdown period had enabled them to increase their physicalactivity, improve their diet and maintain their usual medicationregimen, whilst others noted that lockdown had had a negativeimpact on their self-management behaviours. For example, somepatients decided to discontinue their medication during the pandemicdue to concerns that it would make them more susceptible to severeconsequences from COVID-19. In relation to healthcare provision, themost commonly reported change was the introduction of telephoneappointments to replace face-to-face consultations. Several patientsfound the telephone appointments ineffective, especially if theirdisease was relatively uncontrolled. Nevertheless, participants understood why a remote approach had been implemented during thepandemic.ConclusionCOVID-19 has had an impact on patients' abilities to manage their IA.Healthcare professionals need to recognise the impact of COVID-19on patient self-management and healthcare provision to ensure thatadequate understanding and support is available to patients who mayhave inadequate disease control as a result.
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Background/AimsCOVID-19 lockdown has affected the mental health of many peoplearound the world. People with inflammatory arthritis (IA) are at a higherrisk of mental health and psychosocial consequences of the pandemiccompared with the general population, since they are potentially morevulnerable to COVID-19 and experience higher rates of existingcomorbid mental health disorder. Furthermore, vulnerable patientswere advised to self-isolate for 12 weeks, which could furtherexacerbate emotional distress. This study aimed to explore theimpacts of lockdown on mental health and wellbeing, and to determinewhich factors were associated with worse disease outcomes.MethodsAn online questionnaire was completed by 338 participants in the UKwith an IA condition between June and July 2020. The questionnaire, designed with input from a service user, assessed various aspects ofthe impact of the pandemic on the quality of life of people with IA, including their mental health. Self-reported visual analogue scales(VAS) for patient global assessment (PGA) of disease activity, pain, fatigue, and emotional distress were completed relating to theprevious week, and retrospectively for pre-lockdown (March) andearly-lockdown (April). Specific mental health outcomes were furthercaptured using the 8-item Patient Health Questionnaire (PHQ8) and theshort UCLA loneliness scale. Linear regressions were conducted todetermine mental health factors associated with worse outcomes onphysical health measures (PGA, pain, and fatigue), controlling for fearof COVID-19 and COVID-19 status.ResultsOverall, 49% of participants met the PHQ8 criteria for moderate tosevere depressive symptoms and 58% reported their mental healthhad worsened by more than 10 points on the emotional distress VASduring lockdown. Finally, 37% reported they were concerned aboutloneliness, with 26% indicating this had worsened during lockdown.Emotional distress VAS was significantly associated with PGA(b = 0.21, p< 0.01), pain (b = 0.24, p<0.01), and fatigue (b = 0.36, p<0.01). Similarly, depression was also associated with PGA (b = 0.95, p<0.01), pain (b = 0.92, p<0.01), and fatigue (b = 1.56, p<0.01).However, loneliness was not associated with any of the physicalhealth VAS scores but was associated with the emotional distress VAS(b = 1.83, p=0.00). These results remained consistent for emotionaldistress, depression, and loneliness as predictors when accounting forfear of COVID-19 and COVID-19 status.ConclusionThere has been a clear impact of the pandemic on the mental health ofpeople with IA, and this should be taken into consideration byclinicians, especially as it appears to be related to worse overallreported physical health. The mixed results for loneliness in comparison to other mental health measures may illustrate the interrelatedness of these aspects of mental and physical health, particularlyin the context of lockdown.