Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries

Valcárcel-Nazco, Cristina; Ramallo-Fariña, Yolanda; Linertová, Renata; Ramos-Goñi, Juan Manuel; García-Pérez, Lidia; Serrano‐Aguilar, Pedro

doi:10.3390/ijerph19138208

Cited by 17 publications

(7 citation statements)

References 26 publications

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“…This hypothesis was robust even after accounting for key socio-economic, cultural, demographic and healthcare factors. In general, the findings corroborate existing evidence in Europe [ 32 ], and Asia [ 33 ]. For example, Hsiao and colleagues [ 33 ] report that primary caregivers of older adults who experienced higher levels of caregiver burden also reported poor health-related quality of life.…”

Section: Resultssupporting

confidence: 89%

“…In a published study across six European countries (France, Germany, Italy, Spain, Sweden, and UK), Valcárcel-Nazco et al [ 32 ] found a negative correlation between informal caregivers’ health-related quality of life and caregiver burden. Also, in a cross-sectional study on caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia in Taiwan, Hsiao et al [ 33 ] found that primary family caregivers who experienced mild to moderate caregiver burden had poor health-related quality of life.…”

Section: Introductionmentioning

confidence: 99%

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Caregiver burden and health-related quality of life: A study of informal caregivers of older adults in Ghana

Agyemang-Duah,

Abdullah,

Rosenberg

2024

J Health Popul Nutr

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Background Similar to many developing countries, caregiver burden remains high in Ghana which may affect informal caregivers of older adults’ health-related quality of life (HRQoL). However, no study has examined the association between caregiver burden and HRQoL among informal caregivers of older adults in Ghana to date. Understanding this association may well help to inform health and social policy measures to improve HRQoL among informal caregivers of older adults in Ghana. Situated within a conceptual model of HRQoL, the purpose of this study was to examine the relationship between caregiver burden and HRQoL among informal caregivers of older adults in Ghana. Methods We obtained cross-sectional data from informal caregiving, health, and healthcare (N = 1853) survey conducted between July and September 2022 among caregivers (≥ 18 years) of older adults (≥ 50 years) in the Ashanti Region of Ghana. The World Health Organization Impact of Caregiving Scale was used to measure caregiver burden. An 8-item short form Health Survey scale developed by the RAND Corporation and the Medical Outcomes Study was used to measure HRQoL. Generalized Linear Models were employed to estimate the association between caregiver burden and HRQoL. Beta values and standard errors were reported with a significance level of 0.05 or less. Results The mean age of the informal caregivers was 39.15 years and that of the care recipients was 75.08 years. In our final model, the results showed that caregiver burden was negatively associated with HRQoL (β = − .286, SE = .0123, p value = 0.001). In line with the conceptual model of HRQoL, we also found that socio-economic, cultural, demographic and healthcare factors were significantly associated with HRQoL. For instance, participants with no formal education (β = −1.204, SE= .4085, p value = 0.01), those with primary level of education (β = −2.390, SE= .5099, p value = 0.001) or junior high school education (β = −1.113, SE= .3903, p value= 0.01) had a significantly decreased HRQoL compared to those with tertiary level of education. Participants who were between the ages of 18–24 (β = 2.960, SE= .6306, p value=0.001), 25–34 (β = 1.728, SE= .5794, p value = 0.01) or 35–44 (β = 1.604, SE= .5764, p value= 0.01) years significantly had increased HRQoL compared to those who were 65 years or above. Also, participants who did not utilize healthcare services in the past year before the survey significantly had increased HRQoL compared to those who utilized healthcare services five or more times in the past year (β = 4.786, SE=. 4610, p value= 0.001). Conclusion Consistent with our hypothesis, this study reported a significant negative association between caregiver burden and HRQoL. Our findings partially support the conceptual model of HRQoL used in this study. We recommend that health and social policy measures to improve HRQoL among informal caregivers of older adults should consider caregiver burden as well as other significant socio-economic, cultural, demographic, and healthcare factors.

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Section: Resultssupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Caregiver burden and health-related quality of life: A study of informal caregivers of older adults in Ghana

Agyemang-Duah,

Abdullah,

Rosenberg

2024

J Health Popul Nutr

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“…54% of patients surveyed in the USA also reported that their rare disease had led to isolation from friends [ 23 ]. Not only the patients themselves, but also relatives and caregivers are heavily burdened by the patients’ health situation [ 23 , 25 ].…”

Section: Discussionmentioning

confidence: 99%

Rare diseases: why is a rapid referral to an expert center so important?

Willmen,

Pankow

et al. 2023

BMC Health Serv Res

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Background Patients with rare diseases usually go through years of diagnostic odysseys. The large number of rare diseases and the associated lack of expertise pose a major challenge to physicians. There are few physicians dealing with patients with rare diseases and they usually work in a limited number of specialized centers. The aim of this study was to evaluate the diagnostic efficiency of an expert center. Methods The diagnostic pathway of 78 patients of the outpatient clinic for rare inflammatory systemic diseases with renal involvement was analyzed retrospectively. For this purpose, each examination day was documented with the corresponding examinations performed from the onset of initial symptoms. Three time points were considered: The time when patients first visited a physician with symptoms, the time when patients consulted an expert, and the time when they received the correct diagnosis. In addition, it was documented whether the diagnosis could be made without the expert, or only with the help of the expert. The examinations that confirmed the diagnosis were also documented for each patient. Results A correct diagnosis was made without the help of the expert in only 21% of cases. Each patient visited an average of 6 physicians before consulting the expert. Targeted diagnostics enabled the expert to make the correct diagnosis with an average of seven visits, or one inpatient stay. However, referral to the expert took an average of 4 years. Conclusion The data show that rapid and targeted diagnostics were possible in the expert center due to the available expertise and the interdisciplinary exchange. Early diagnosis is of great importance for many patients, as an early and correct therapy can be decisive for the course of the disease.

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“…A symbiosis between ERN and medical universities could generate great added value for all European RD stakeholders. Another major international tool for dissemination and promotion of knowledge about RD is the Orphanet portal for RD and orphan drugs [40][41][42][43]. Over the past 25 years of activity, Orphanet has become the leading reference source of information on RD and has helped shape the RD landscape in Europe and around the world.…”

Section: Discussionmentioning

confidence: 99%

What is the awareness of rare diseases among medical students? A survey in Bulgaria

Hristova-Atanasova

Искров

Aтанасов³

et al. 2023

Preprint

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Background: Rare diseases (RD) are life-threatening or chronically debilitating and offer a high level of complexity. The aim of this study is to assess medical students’ knowledge and awareness of RD as well as their perceptions of potential measures to boost training in RD. The cross-sectional survey was conducted at the Medical University of Plovdiv, Bulgaria, in 2019. The questionnaire contained 12 questions, divided into three main categories: (1) sociodemographic profile; (2) knowledge and awareness of RD; and (3) attitudes about potential measures to improve training in RD. Results: A total of 1189 students completed the survey with an overall response rate of 56.4%. Only 13% of participants knew the correct definition of RD, and a low overall level of awareness was found with regard to orphan drugs (20.3%) and genetic counselling and testing (0.5%). Respondents believed that society as a whole was largely unaware of RD as a major public health issue. Students suggested elective courses, and invited lectures by RD experts, and participation in research projects as the most preferred measures to improve undergraduate training. Conclusions: It is crucial to address the gaps in medical students' knowledge and awareness of RD. University curricula should consider incorporating different RD training modalities. It is essential to encourage various stakeholders to play a more proactive role and to collaborate in these activities. Involvement of patient organisations and advocacy groups might enhance students' knowledge of the challenges faced by people with RD. Not last, the media should be partners in this important endeavour as well.

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Health-Related Quality of Life and Perceived Burden of Informal Caregivers of Patients with Rare Diseases in Selected European Countries

Cited by 17 publications

References 26 publications

Caregiver burden and health-related quality of life: A study of informal caregivers of older adults in Ghana

Caregiver burden and health-related quality of life: A study of informal caregivers of older adults in Ghana

Rare diseases: why is a rapid referral to an expert center so important?

What is the awareness of rare diseases among medical students? A survey in Bulgaria

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