scholarly journals What is the impact of giant cell arteritis on patients’ lives? A UK qualitative study

BMJ Open ◽  
2017 ◽  
Vol 7 (8) ◽  
pp. e017073 ◽  
Author(s):  
Jennifer Liddle ◽  
Roisin Bartlam ◽  
Christian D Mallen ◽  
Sarah L Mackie ◽  
James A Prior ◽  
...  

ObjectivesClinical management of giant cell arteritis (GCA) involves balancing the risks and burdens arising from the disease with those arising from treatment, but there is little research on the nature of those burdens. We aimed to explore the impact of giant cell arteritis (GCA) and its treatment on patients’ lives.MethodsUK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed.Results24 participants were recruited (age: 65–92 years, time since diagnosis: 2 months to >6 years). The overarching themes from analysis were: ongoing symptoms of the disease and its treatment; and ‘life-changing’ impacts. The overall impact of GCA on patients’ lives arose from a changing combination of symptoms, side effects, adaptations to everyday life and impacts on sense of normality. Important factors contributing to loss of normality were glucocorticoid-related treatment burdens and fear about possible future loss of vision.ConclusionsThe impact of GCA in patients’ everyday lives can be substantial, multifaceted and ongoing despite apparent control of disease activity. The findings of this study will help doctors better understand patient priorities, legitimise patients’ experiences of GCA and work with patients to set realistic treatment goals and plan adaptations to their everyday lives.

2019 ◽  
Vol 56 (9) ◽  
pp. 1181-1186 ◽  
Author(s):  
Ella Guest ◽  
Bruna Costa ◽  
Gillian McCarthy ◽  
Claire Cunniffe ◽  
Nicola Marie Stock

Objective: The birth of a child with a cleft lip and/or palate (CL/P) can have a significant emotional and social impact on parents. Yet, the impact on the wider family is rarely investigated. Grandparents are becoming increasingly involved in the care of their grandchildren and may therefore have support needs of their own. The aim of the current study was to explore the experiences and support needs of grandparents of children born with CL/P. Design: Individual semistructured telephone interviews were carried out with 12 grandparents of children born with CL/P and were analyzed using inductive thematic analysis. Results: Five themes were identified (1) emotional impact of CL/P on grandparents, (2) grandparents’ social experiences, (3) grandparents’ involvement, (4) grandparents’ information needs, and (5) grandparents’ support needs. Participants experienced difficult emotions around the time of diagnosis and were concerned about the child’s treatment and future experiences. Participants played a significant role in supporting the whole family, but received little information or support themselves. Conclusions: Grandparents reported experiences comparable to published literature on parents. Clinicians and charitable organizations could consider how existing resources could be made more accessible to and/or adapted for wider family members, including grandparents.


2016 ◽  
Vol 43 (8) ◽  
pp. 1547-1552 ◽  
Author(s):  
Alexis Régent ◽  
Serge Redeker ◽  
Alban Deroux ◽  
Pierre Kieffer ◽  
Kim Heang Ly ◽  
...  

Objective.To report the efficacy and safety of tocilizumab (TCZ) for giant cell arteritis (GCA).Methods.A retrospective multicenter study that included 34 patients receiving TCZ for GCA.Results.TCZ was effective in all but 6 patients, who still had mild symptoms. Mean glucocorticoid dose was tapered. One patient died and 3 patients had to stop TCZ therapy because of severe adverse events. Twenty-three patients stopped treatment; 8 of these experienced relapses after a mean of 3.5 ± 1.3 months.Conclusion.TCZ is effective in GCA. However, side effects occur. Whether this treatment has only a suspensive effect remains to be determined.


Author(s):  
M Y Gebregeorgis

The objective of this study was to explore the endogenous conflict resolution mechanisms and practices of the San people at Platfontein, South Africa. To this end, data were collected from 304 interviews and 26 focus group discussions. The collected data were analysed through Inductive Thematic Analysis. The findings show that the San people have endogenous conflict resolution mechanisms which basically aim at restoring peace and harmony within the community. The endogenous mechanisms were found to be fairly participatory and supplementary to the state machineries that work for justice, peace and harmony. However, the conflict resolution mechanisms of the San people are currently weakening due to the impact of modernisation and the leadership dispute among the sub-groups of the community.


2019 ◽  
Author(s):  
E Kaltsonoudis ◽  
E Pelechas ◽  
A Papoudou-Bai ◽  
E.T. Markatseli ◽  
M Elisaf ◽  
...  

ABSTRACTBackgroundTemporal artery biopsy (TAB) is useful in assisting with giant cell arteritis (GCA) diagnosis but lacks sensitivity. The aim of our study was to assess the diagnostic impact of TAB histology in patients with suspected GCA on hospital admission.MethodsA prospectively maintained database was queried for all TABs performed between 1-1-2000 until 31-12-2017 at the University Hospital of Ioannina. Thus, inclusion criteria were made on the grounds of every patient that underwent a TAB during the above-mentioned period, regardless of demographic, clinical and laboratory data.ResultsTwo hundred forty-five TABs were included (149 females and 96 males), with a mean age of 64.5 (±3.5) years. The mean symptoms duration until admission to the hospital was 8.6 (±1.3) weeks and all had elevated acute phase reactants on admission. The reasons of admission were fever of unknown origin (FUO) in 114 (46.5%) patients, symptoms of polymyalgia rheumatica (PMR) in 84 (34.3%), new headache in 33 (13.5%), anemia of chronic disease (ACD) in 8 (3.32%) and eye disturbances in 6 (2.5%) patients. Positive results were found in 49 (20%) TABs. More specifically, in 14% of patients with FUO, 21% in those with PMR, while in patients with a new headache the percentage was 27%. Finally, 5 out of 6 (83.3%) of patients with ocular symptoms and only one (12.5%) of those suffering from ACD. Visual manifestations and FUO are correlated with a positive TAB.ConclusionIt seems that TAB is useful in assisting with GCA diagnosis, but lacks sensitivity.


PLoS ONE ◽  
2019 ◽  
Vol 14 (3) ◽  
pp. e0210845 ◽  
Author(s):  
Evripidis Kaltsonoudis ◽  
Eleftherios Pelechas ◽  
Alexandra Papoudou-Bai ◽  
Theodora E. Markatseli ◽  
Moses Elisaf ◽  
...  

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S764-S765
Author(s):  
Tonya N Taylor

Abstract Intersecting stigmatized social identities (i.e., old, Black, gay, HIV+) and structural forms of privilege and oppression (ageism, racism, homophobia, and HIV stigma) can contribute to poor psychological wellbeing and clinical outcomes among older men with HIV (OMH). Using data from 6 focus groups and 15 interviews with 45 gay, bisexual and heterosexual OMH in Brooklyn, NY and inductive thematic analysis methods, we explored the impact of heteronormative gender roles and ideologies associated with masculinity on healthy aging with HIV. We found that changing physical and sexual function, appearance and growing financial expectations created threats to masculinity, fueling fears of perceived weakness, internalized feelings of shame, depression, anticipated loss of social status (partner loss), and loss of independence and autonomy. These findings suggest that normative gender beliefs, a key social determinant of men’s health, aging and intersectional stigma combined undermine psychosocial support and wellbeing and self-care needed to achieve healthy aging.


2021 ◽  
Vol 47 (1) ◽  
pp. 59-65
Author(s):  
Abhinand Thaivalappil ◽  
Mariola Mascarenhas ◽  
Lisa A Waddell ◽  
Ian Young

Background: The Publicly Available International Foodborne Outbreak Database (PAIFOD) is a regularly updated repository that contains international outbreak data collected from multiple surveillance systems and sources. As of February 2020, the database contained more than 13,000 entries spanning over 20 years. PAIFOD is the only known database that captures international foodborne outbreak data. Objective: To explore user perceptions and identify potential directions for PAIFOD and make recommendations for databases with food safety information. Methods: Between January and March 2020, 16 semistructured telephone interviews were conducted with 24 previous, current and potential PAIFOD users. Interviewees were asked about their knowledge of and experience of using PAIFOD as well as about its strengths and limitations and recommendations for the database. An inductive thematic analysis approach was used to analyze qualitative data and generate themes. Results: Four main themes were generated based on the 24 interviewees’ accounts of their experience with and recommendations for PAIFOD: participants viewed PAIFOD as a useful tool; they weren’t familiar with its contents or purpose; they stated it should become an open-access platform or linked with another information-sharing initiative; and they considered that PAIFOD had the potential to enhance the Agency’s reputation by becoming widely recognized and used. Conclusion: This work, along with the ever-changing landscape of foodborne surveillance, supports the need to ensure that PAIFOD is updated to meet the modern-day demands of food safety experts.


Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Hairul Hadi Ariff ◽  
Abid Awisat ◽  
Jack Arnold ◽  
Hudaifa Al Ani ◽  
Lorraine O' Neill ◽  
...  

Abstract Background Giant cell arteritis (GCA) is treated with high dose glucocorticoids and progressively reduced over months to years. We undertook an audit to evaluate self-reported adherence to the original recommended glucocorticoid course and explored reasons for any variation. Methods We recruited patients attending a single rheumatology department over 18 months. Respondents were given two self-administered questionnaires to record information regarding their use of glucocorticoids during the last 7 days and during the last 6 months. We retrieved 132 questionnaires (of whom 6 were discarded as incomplete). All data was analysed using SPSS Statistics v22. Results Of the 126 patients (mean age 74.9 ± 7.7 years), 59% were female. The mean duration of disease was 22.5 ± 19.1 months in patients with GCA and 32.9 ± 29.9 months in those with GCA and polymyalgia rheumatica (PMR). The mean daily number of medications taken was 9.2 ± 5.2 (range: 1 - 30); the mean number of types of daily tablets taken was 5.0 ± 2.1 (range: 1 - 10). The mean daily number of glucocorticoid tablets taken was 3.2 ± 2.6 (range: 0 - 12), with a mean daily dose of 11.1 ± 10.3 mg (range: 0 - 60 mg). Overall, in the last 7 days, 22% and in last 6 months, 40% of patients were not following their original recommended steroid regimens (Table 1). The total mean glucocorticoid dose in the last 7 days group (n = 81) was 77.8 ± 70.1 mg/week (11.1 ± 10.1 mg/day) whilst the total mean glucocorticoid dose in the last 6 months group (n = 45) was 1782.0 ± 1543.3 mg/6 month (9.9 ± 8.6 mg/day). Most respondents stated their glucocorticoid non-adherence was due to medical advice; other reasons included forgetting, fear of side effects, or confusion about different preparations of prescribed glucocorticoids. The presence of PMR did not influence glucocorticoid adherence. Conclusion There is significant variation in the use of glucocorticoids compared to the original starting regimen in patients with GCA, with or without PMR. However, the amount of the discrepancy is small. The commonest reason for non-adherence was medical advice received from either primary or secondary care. Disclosures H. Ariff: None. A. Awisat: None. J. Arnold: None. H. Al ani: None. L. O' neill: None. M. Rodriguez: None. R. Luqmani: None.


2019 ◽  
Vol 140 (3) ◽  
pp. 148-152
Author(s):  
RC Povey ◽  
LJ Cowap ◽  
K Scholtens ◽  
MJ Forshaw

Aims: To discover the reasons behind invited families’ lack of engagement with a family-based childhood obesity programme in a deprived area. Methods: Interviews were conducted with 10 families who were invited to join the programme, but declined to engage. There were two distinct subgroups of participants: those who had no interest in attending the programme and those who showed initial interest yet did not continue attending. The two subgroups were analyzed separately using inductive thematic analysis, and then compared. Results: Analysis identified eight themes overall. For both groups, when the service was perceived to be not needed (‘I didn’t see how that would help’), the families disengaged with it. For both groups, this perception was partly related to the perceived appearance of their children: either that they were not obese (‘I didn’t think my son was overweight’) or that they were growing into their size. There was also a similarity in both groups that they perceived that they were already following healthy lifestyles. In addition, several of the themes arising from the families who had no initial interest were related to the impact of the letter that parents received detailing the result of their child being weighed and measured at school. This angered parents (‘I was disgusted’), and there was a feeling that the approach was too generic. Conclusion: This study identified a number of potential reasons behind why families may decline to engage with a childhood obesity programme in a deprived area. Across all families, if the programme was perceived as not needed, they would disengage. For those who did not engage at all, the initial communication of the child’s body mass index (BMI) is crucial. Recommendations include taking a more personal and tailored approach for the initial communication and shifting the focus of the programmes onto healthier lifestyles.


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