Psychosocial Distress in Patients With Advanced CKD by Racial Group and Immigrant Status: A Canadian Cross-sectional Study

Singh, Navneet; Thiagalingam, Punithan; Hussain, Junayd; Shah, Vishva; Edwards, Nathaniel; Lui, Eric; Nesrallah, Gihad; Walele, Abdul Aziz; Novák, Márta; James, Carl E.; Mucsi, István

doi:10.1053/j.ajkd.2022.06.009

Cited by 3 publications

(10 citation statements)

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“…The Social Difficulties Inventory (SDI)7 is a self-reported 21-item instrument assessing the social impact of diagnosis and treatment (eg, domestic chores, personal care, available support). Initially developed for oncology practice, the SDI demonstrated good psychometric properties 63 64. Response to items on the SDI range from 0 ‘no difficulty’ to 3, ‘very much difficult.’ Its use in our patient population is supported by our preliminary findings 64 65…”

Section: Methods and Analysismentioning

confidence: 99%

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Self-reported MeasUrement of Physical and PsychosOcial Symptoms Response Tool (SUPPORT-dialysis): systematic symptom assessment and management in patients on in-centre haemodialysis – a parallel arm, non-randomised feasibility pilot study protocol

Gill,

Pucci,

Samudio

et al. 2024

BMJ Open

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IntroductionPatients with kidney failure experience symptoms that are often under-recognised and undermanaged. These symptoms negatively impact health-related quality of life and are associated with adverse clinical outcomes. Regular symptom assessment, using electronic patient reported outcomes measure (ePROMs) linked to systematic symptom management, could improve such outcomes. Clinical implementation of ePROMs have been successful in routine oncology care, but not used for patients on dialysis. In this study, we describe a pilot study of ePROM-based systematic symptom monitoring and management intervention in patients treated with in-centre haemodialysis.Methods and analysisThis is a parallel-arm, controlled pilot of adult patients receiving in-centre maintenance haemodialysis. Participants in the intervention arm will complete ePROMs once a month for 6 months. ePROMs will be scored real time and the results will be shared with participants and with the clinical team. Moderate-severe symptoms will be flagged using established cut-off scores. Referral options for those symptoms will be shared with the clinical team, and additional symptom management resources will also be provided for both participants and clinicians. Participants in the control arm will be recruited at a different dialysis unit, to prevent contamination. They will receive usual care, except that they will complete ePROMs without the presentation of results to participants of the clinical team. The primary objectives of the pilot are to assess (1) the feasibility of a larger, randomised clinical effectiveness trial and (2) the acceptability of the intervention. Interviews conducted with participants and staff will be assessed using a content analysis approach.Ethics and disseminationEthical approval for this study was obtained from the University Health Network (REB#21-5199) and the William Osler Health System (#23-0005). All study procedures will be conducted in accordance with the standards of University Health Network research ethics board and with the 1964 Helsinki declaration and its later amendments. Results of this study will be shared with participants, patients on dialysis and other stakeholders using lay language summaries, oral presentations to patients and nephrology professionals. We will also be publishing the results in a peer-reviewed journal and at scientific meetings.Protocol version4 (16 November 2022).Trial registration numberNCT05515991.

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Section: Methods and Analysismentioning

confidence: 99%

“…Initially developed for oncology practice, the SDI demonstrated good psychometric properties 63 64. Response to items on the SDI range from 0 ‘no difficulty’ to 3, ‘very much difficult.’ Its use in our patient population is supported by our preliminary findings 64 65…”

Section: Methods and Analysismentioning

confidence: 99%

Self-reported MeasUrement of Physical and PsychosOcial Symptoms Response Tool (SUPPORT-dialysis): systematic symptom assessment and management in patients on in-centre haemodialysis – a parallel arm, non-randomised feasibility pilot study protocol

Gill,

Pucci,

Samudio

et al. 2024

BMJ Open

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“…In this study, we used 2 coprimary exposures (i.e., self-reported immigrant and racialized status). 23 Immigrant status was assessed with the question: “Are you now or have you ever been a landed immigrant, refugee, or been on a work/minister permit [temporary resident permit] in Canada?” 64 Answers were dichotomized as “immigrant” versus “nonimmigrant”. Racialized status is defined as groups that are distinct from the White “reference” group, which generally holds higher political, social, and economic power in a society.…”

Section: Methodsmentioning

confidence: 99%

“… 12 , 13 , 14 , 15 , 16 , 17 Frequently, the term “race” is used to ascribe individuals to groups based on ancestral origin, which is assumed to contribute to genetic, cultural, educational, and socioeconomic characteristics of group members. Instead, we use the term “racialization” 18 , 19 , 20 , 21 , 22 , 23 , 24 to emphasize the complex historical, social, and political processes that form the racialized categories. This term also indicates that the processes forming and reinforcing those categories are, frequently and to a large extent, driven and informed by values, judgments, biases, and sociopolitical structures external to the affected individuals and groups.…”

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confidence: 99%

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Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study

Lui,

Gill,

Hamid

et al. 2024

Kidney International Reports

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Coping With COVID‐19: Perspectives of Caregivers of Children and Young People With Chronic Kidney Disease

Piotrowski,

Strong,

Giesbrecht

et al. 2024

Pediatric Transplantation

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BackgroundCaregivers of children and young people with chronic kidney disease (CKD) face challenging circumstances on a daily basis; however, the difficulties they experienced during the COVID‐19 pandemic, as well as potentially positive experiences, are not yet fully understood. The aim of this study was to explore the pandemic‐related experiences of these caregivers.MethodsTwelve caregivers were recruited from a hospital‐based pediatric renal program; eight families were posttransplant. Caregivers participated in virtual semistructured interviews conducted between March 2021 and November 2022. They provided responses to open‐ended questions concerning how the pandemic affected their child with CKD, their family, and themselves. Interviews were transcribed and coded using thematic analysis.ResultsFour main themes were identified: (1) Family Life, which included disruptions in routine, reduced social supports, and changes in the quality of family relationships; (2) Mental Health and Coping, which included increased anxiety and positive coping strategies; (3) Work and School Life, which included changes to work and school; and (4) Health and Health Care Systems, which included virtual health care and public health restrictions.ConclusionsDespite facing profound challenges, caregivers identified both positive and negative aspects of their pandemic experiences. Their coping strategies highlighted individual and family resilience characteristics. Implications for health care providers, including future pandemic planning, support for the transition from in‐person to virtual care, and strategies to better address barriers to resources for families of children with chronic kidney disease were discussed.

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Psychosocial Distress in Patients With Advanced CKD by Racial Group and Immigrant Status: A Canadian Cross-sectional Study

Cited by 3 publications

References 63 publications

Self-reported MeasUrement of Physical and PsychosOcial Symptoms Response Tool (SUPPORT-dialysis): systematic symptom assessment and management in patients on in-centre haemodialysis – a parallel arm, non-randomised feasibility pilot study protocol

Self-reported MeasUrement of Physical and PsychosOcial Symptoms Response Tool (SUPPORT-dialysis): systematic symptom assessment and management in patients on in-centre haemodialysis – a parallel arm, non-randomised feasibility pilot study protocol

Racialized and Immigrant Status and the Pursuit of Living Donor Kidney Transplant - a Canadian Cohort Study

Coping With COVID‐19: Perspectives of Caregivers of Children and Young People With Chronic Kidney Disease

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