Listening to Lupus Patients and Families: Fine Tuning the Assessment

Beckerman, Nancy L.; Sarracco, Michele

doi:10.1080/00981389.2012.683679

Cited by 9 publications

(19 citation statements)

References 29 publications

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“…6 Only three other studies, all performed in the USA, have assessed the impact of SLE on carers; all of these studies involved relatively small carer numbers ( N = 6, 10 and 253). 7,14,15 An additional limitation was that our survey was mainly limited to Caucasian and computer literate participants with the time to answer the survey; thus, it may not be representative of all SLE patients in the UK. There may also have been carer selection bias, with only carers who felt particularly burdened completing the survey.…”

Section: Discussionmentioning

confidence: 99%

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Kent

Davidson

Newman

et al. 2017

Lupus

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Objective The objective of this study was to assess the impact of systemic lupus erythematosus (SLE) on patients and carers. Methods Adults with SLE and carers of SLE patients completed a UK-specific online survey covering many aspects of the disease. Surveys were developed in collaboration with an NHS lupus unit and a lupus patient organization. Results A total of 121 patients and 31 carers completed the surveys. Of the 70% of patients initially misdiagnosed with another condition, 59% received treatment for the misdiagnosis. Fatigue was the most debilitating symptom, experienced daily by 79% of patients. The proportion of patients not reporting flares to healthcare providers varied with flare severity: mild flares (43%), moderate flares (15%) and severe flares (5%). Most patients (89%) reported reduced ability to socialize, and 76% had changed employment; of these, 52% stopped working completely. Over one-half (52%) of carers in paid employment missed time from work, and 55% of carers reported a worsened financial status. Most carers (87%) experienced interference with social activities. Conclusion SLE is commonly misdiagnosed and has a considerable impact on the physical, social and financial status of patients and carers. Increased awareness of the disease among healthcare providers and employers of patients and their carers is needed.

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Section: Discussionmentioning

confidence: 99%

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Kent

Davidson

Newman

et al. 2017

Lupus

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“…Similarly, patients with RA more frequently experience negative sensations with respect to social skills, such as sadness, frustration, and defenselessness [ 9 ]. In patients with SLE, loss and uncertainty have been reported to be the two main sensations with respect to social relationships [ 10 ]. The first refers to different types of loss—for example, physical ability, appearance, independence, and family balance.…”

Section: Introductionmentioning

confidence: 99%

Ability to Participate in Social Activities of Rheumatoid Arthritis Patients Compared with Other Rheumatic Diseases: A Cross-Sectional Observational Study

et al. 2021

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Objectives: To compare the ability to participate in social activities among rheumatoid arthritis patients with other rheumatic disease patients and identify potentially implicated factors. Patients and methods: Between June and November 2019, we consecutively selected patients aged ≥18 years with RA (defined according to ACR/EULAR 2010), SpA (ASAS/EULAR 2010), and SLE (ACR 1997). Main outcome measures: Ability to participate in social roles and activities evaluated using the PROMIS score v2.0 short-form 8a (PROMIS-APS). Secondary outcomes: Participation in social activities according to a series of variables (mobility, depression, satisfaction with social relationships, social isolation, company, emotional support, instrumental support, and support via information). We evaluated the association between the ability to participate in social activities and associated variables using multivariable linear regression analysis. Results: The study population comprised 50 patients with RA (33.1%), 51 patients (33.8%) with SpA, and 50 patients (33.1%) with SLE. The mean PROMIS-APS scores were similar in the three groups. The multivariable analysis for the whole sample showed that the ability to participate in social activities was inversely associated with depression and directly with social satisfaction, mobility, company, and age. The stratified analysis revealed an inverse association between inflammatory activity and ability to participate in social activities in patients with RA and SpA, but not in those with SLE. Conclusion: All patients with RA, SpA, and SLE had a similar ability to participate in social activities. This was associated with other psychosocial factors (social satisfaction, mobility, company, depression) and clinical factors (age and inflammatory activity).

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“…Dobkin et al, 1999;Rinaldi et al, 2006;Da Costa et al, 2000;Friedman et al, 1999;Abu-Shakra et al, 2006;Bennett, Fuertes, Keitel & Phillips, 2011;Dobkin et al, 2002;Haupt et al, 2005;Dobkin et al, 2001) who qol-Brief scales 2 (Hyphantis et al, 2011;Abu-Shakra et al, 2006) Focus groups 1 (Robbins, Allegrante, & Paget, 1993;Beckerman, 2011) Coping: The Coping Style Inventory (csi) 1 (Kozora, et al, 2005) Freiburg questionnaire on coping with illness (fkv) 1 (Haupt et al, 2005) The Coping Orientation to Problems Experienced (cope) 1 (Rinaldi et al, 2006) Lupus erythematosus needs questionnaire (slenq) 1 (Auerbach, Beckerman & Blanco, 2013) Lupuspro 1 (Jolly et al, 2014) General Health Questionnaire-30 (ghq-30) 1 (Ng & Chan, 2007) Coping skills 10 items questionnaire designed by Arthritis Foundation. 1 (Sohng, 2003) Focus groups 3 (Beckerman, 2011;Beckerman & Sarracco, 2012;Robbins, Allegrante & Paget, 1993) in different significant domains of life experience, such as social relationships, personal development and intimacy. Other interventions showed effective results focused in specific areas.…”

Section: Copingmentioning

confidence: 99%

Coping and Quality of Life in Patients with Systemic Lupus Erythematosus: A Review

Córdoba-Sánchez

Limonero

2015

Pensando Psicol.

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Background: Systemic lupus erythematosus (sle) is characterized by uncertain prognosis, severe symptoms and a negative impact on quality of life (qol) of patients. Purpose: The aim of this review is to generate a comprehensive approach in order to improve psychological intervention in these patients. Methods: A qualitative review of articles indexed in medline, Psycinfo and Scopus up to July 2015 was conducted. Articles reporting sle, coping strategies and qol were included. Results: Twenty-four studies were found, covering different research designs, forms of assessment and intervention. Coping strategies and their relationship with qol were analyzed in order to describe the best strategies for dealing with sle. Conclusions: There are no adaptive or maladaptive strategies, and the suitability of these depends on the situation that a patient could sustain; nevertheless, an active coping style seems to help preserve the qol. The main goal of psychological intervention should be to diversify and expand the number of coping strategies used by patients.

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Listening to Lupus Patients and Families: Fine Tuning the Assessment

Cited by 9 publications

References 29 publications

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey

Ability to Participate in Social Activities of Rheumatoid Arthritis Patients Compared with Other Rheumatic Diseases: A Cross-Sectional Observational Study

Coping and Quality of Life in Patients with Systemic Lupus Erythematosus: A Review

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