Symptom Clusters From Dialysis to Renal Transplantation: A Five-Year Longitudinal Study

Amro, Amin; Waldum-Grevbo, Bård; Lippe, Nanna von der; Brekke, Fredrik Barth; Miaskowski, Christine; Os, Ingrid

doi:10.1016/j.jpainsymman.2015.10.012

Cited by 28 publications

(38 citation statements)

References 36 publications

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“…We attempted to focus on the symptoms that participants reported as having the greatest impact on their lives. From the point of view of participants, symptoms were often interrelated in terms of their impact on daily activities . Health care providers can play a more active role in helping patients to control dialysis‐related symptoms by inquiring regularly about which symptoms are most bothersome, listening carefully, and partnering with patients to enhance their ability to self‐manage symptoms and their impact.…”

Section: Discussionmentioning

confidence: 99%

Symptoms among patients receiving in‐center hemodialysis: A qualitative study

Cox¹,

Parshall²,

Hernandez³

et al. 2016

Hemodialysis International

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Introduction Assessment of dialysis-related symptoms is not currently a requirement for hemodialysis (HD) providers in the United States. The purpose of this study was to describe patients' perspectives on symptoms associated with end-stage chronic kidney disease treated with thrice-weekly, in-center HD. Methods We performed a qualitative study using interpretive description. Interview questions were based on a KDIGO (Kidney Disease Improving Global Outcomes) controversies conference and a literature review. Semistructured interviews were analyzed for characterizations of symptoms. Findings Fifty participants (48% female; 42% Hispanic; 30% American Indian; 14% Black; 12% non-Hispanic White) were recruited from six outpatient dialysis centers (four urban, two rural) in the southwestern United States. Median HD duration was four years. Of 13 symptoms assessed, nearly all participants reported difficulties with muscle cramping, fatigue, or both. Negotiating fluid removal with dialysis personnel helped to manage cramping. Some participants tried to adjust dialysis days and shift to mitigate fatigue. Most participants reported having experienced depression early in the course of dialysis; for some, it was a persistent or recurrent problem. Relatively few participants reported using antidepressants or counseling to cope with depression. Itching was highly distressing for those who experienced it frequently. Topical treatments, antihistamines, dietary modifications, and phosphate binders were identified as potentially helpful by some participants. Discussion The major symptoms attributed to HD treatment by participants were cramping, fatigue, depression, and itching. Greater attention by health care providers to the most common and bothersome symptoms could positively impact daily life for HD patients.

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Section: Discussionmentioning

confidence: 99%

Symptoms among patients receiving in‐center hemodialysis: A qualitative study

Cox¹,

Parshall²,

Hernandez³

et al. 2016

Hemodialysis International

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“…They had to be ≥18 years old and able to read and speak Norwegian. Both patient groups frequently experience a long period of slow deterioration of their health status before undergoing surgery, and both groups do experience a variety of symptoms in the aftermath [36][37][38][39][40], which negatively impact HRQoL [41,42]. Renal replacement therapy through RTX is generally accepted as the preferred treatment for end-stage renal disease [36].…”

Section: Settings and Participantsmentioning

confidence: 99%

“…RTX symptoms include, but is not limited to, swelling, itching, thirst and changes in bowel and urinary habits [36]. Patients may also experience symptoms' from medication side-effects and other co-morbid conditions [40]. NFPAs are benign pituitary tumors, and treatment is primarily surgery [37].…”

Section: Settings and Participantsmentioning

confidence: 99%

Content and system development of a digital patient-provider communication tool to support shared decision making in chronic health care: InvolveMe

Seljelid

Varsi

Nes

et al. 2020

BMC Med Inform Decis Mak

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Background: Chronic conditions present major health problems, affecting an increasing number of individuals who experience a variety of symptoms that impact their health related quality of life. Digital tools can be of support in chronic conditions, potentially improving patient-provider communication, promoting shared decision making for treatment and care, and possibly even improving patient outcomes. This study aimed to develop a digital tool for patient-provider communication in chronic health care settings and describes the data collection and subsequent content and software development of the InvolveMe tool. InvolveMe will provide patients with the opportunity to report symptoms and preferences to their health care providers (HCP), and to use secure messaging to interact with the HCPs. Method: The study employed a combination of interviews with patients with chronic conditions and focus groups with HCPs, examining experiences with chronic conditions and the potential use of a digital tool for support. Participants were recruited from two outpatient clinics at a university hospital. Data collected from interviews and focus groups were analysed using thematic analysis. Content and software development was informed by the data collection and by tool development workshops.Results: Analyses from interviews with patients (n = 14) and focus groups with HCPs (n = 11) generated three main themes: 1) Making symptoms and challenges visible, 2) Mastering a new life, and 3) Digital opportunities for follow-up. Each main theme generated separate subthemes. Theme 1 and 2 gave input for content development of the symptom and needs assessment part of the tool, while theme 3 provided ideas for the software development of the InvolveMe tool. Tool development workshops with patients (n = 6) and HCPs (n = 6) supplemented the development. Conclusions:A digital tool such as InvolveMe has the potential to support shared decision making for patients with chronic health conditions. Through integration with an existing patient portal such a tool can provide opportunities for meaningful interactions and communication between patients and HCP's, particularly with regards to symptoms, needs and preferences for care.

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“…D I G O e x e c u t i v e c o n c l u s i o n s JE Flythe et al: BP and volume control in dialysis: a KDIGO conference reportclinicians and patients to recognize these individualized indicators. Research aimed at understanding symptom constellations is needed 162. …”

mentioning

confidence: 99%

Blood pressure and volume management in dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

Flythe¹,

Chang²,

Gallagher³

et al. 2020

Kidney International

164

163

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Symptom Clusters From Dialysis to Renal Transplantation: A Five-Year Longitudinal Study

Abstract: Although symptoms and symptom clusters were reduced after RTX, the clinical relevance of the reductions was ambiguous. Symptom clusters could not be generated after RTX, suggesting that use of the KDQOL-SF may not be optimal to assess symptoms in RTX patients.

Cited by 28 publications

References 36 publications

Symptoms among patients receiving in‐center hemodialysis: A qualitative study

Symptoms among patients receiving in‐center hemodialysis: A qualitative study

Content and system development of a digital patient-provider communication tool to support shared decision making in chronic health care: InvolveMe

Blood pressure and volume management in dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference

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