An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis

Schick‐Makaroff, Kara; Levay, Adrienne; Thompson, Stephanie; Flynn, Rachel; Sawatzky, Richard; Thummapol, Onouma; Klarenbach, Scott; Karimi-Dehkordi, Mehri; Greenhalgh, Joanne

doi:10.1007/s40271-021-00530-2

Cited by 10 publications

(25 citation statements)

References 124 publications

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“…[14][15][16]18,19 Patients and clinicians first alerted us to this need: We identified that mental health symptoms experienced by Canadians receiving dialysis are not routinely assessed and inadequately addressed. 6,[20][21][22][23][24] This was confirmed in our realist synthesis on patient-reported outcome use in kidney care [25][26][27] and by some of our community advisors in a kidney patient-led Patient and Community Engagement Research (PaCER) study on mental wellness 28 who wrote, "the most glaring gap in care is the lack of psychosocial support available to patients" (p. 3). However, the perspectives of people receiving dialysis regarding mental health supports have rarely been addressed.…”

Section: Introductionmentioning

confidence: 61%

How Are Albertans “Adjusting to and Coping With” Dialysis? A Cross-Sectional Survey

Schick‐Makaroff

Berendonk

Overwater

et al. 2022

Can J Kidney Health Dis

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Background: Depression and anxiety are commonly reported (40% and 11%-52%) among adults receiving dialysis, compared with ~10% among all Canadians. Mental health in dialysis care is underrecognized and undertreated. Objective: (1) To describe preferences for mental health support reported by Albertans receiving dialysis; (2) to compare depression, anxiety, and quality-of-life (QOL) domains for people who would or would not engage in support for mental health; and (3) to explore sociodemographic, mental health, and QOL domains that explain whether people would or would not engage in support for mental health. Design: A cross-sectional survey. Setting: Alberta, Canada. Patients: Adults receiving all modalities of dialysis (N = 2972). Measurements: An online survey with questions about preferences for mental health support and patient-reported outcome measures (Patient Health Questionnaire–9 [PHQ-9], Generalized Anxiety Disorder–7 [GAD-7], and Kidney Disease QOL Instrument–36 [KDQOL-36]). Methods: To address objectives 1 and 2, we conducted chi-square tests (for discrete variables) and t tests (for continuous variables) to compare the distributions of the above measures for two groups: Albertans receiving dialysis who would engage or would not engage in support for mental health. We subsequently conducted a series of binary logistic regressions guided by the purposeful variable selection approach to identify a subset of the most relevant explanatory variables for determining whether or not people are more likely to engage in support for mental health (objective 3). To further explain differences between the two groups, we analyzed open-text comments following a summative content analysis approach. Results: Among 384 respondents, 72 did not provide a dialysis modality or answer the PHQ-9. The final data set included responses from 312 participants. Of these, 59.6% would consider engaging in support, including discussing medication with a family doctor (72.1%) or nephrologist (62.9%), peer support groups (64.9%), and talk therapy (60%). Phone was slightly favored (73%) over in person at dialysis (67.6%), outpatient (67.2%), or video (59.4%). Moderate to severe depressive symptoms (PHQ-9 score ≥10) was reported by 33.4%, and most respondents (63.9%) reported minimal anxiety symptoms; 36.1% reported mild to severe anxiety symptoms (GAD-7 score ≥5). The mean (SD) PHQ-9 score was 8.9 (6.4) for those who would engage in support, and lower at 5.8 (4.8) for those who would not. The mean (SD) GAD-7 score was 5.2 (5.6) for those who would engage in support and 2.8 (4.1) for those who would not. In the final logistic regression model, people who were unable to work had 2 times the odds of engaging in support than people who are able to work. People were also more likely to engage in support if they had been on dialysis for fewer years and had lower (worse) mental health scores (odds ratios = 1.06 and 1.38, respectively). The final model explained 15.5% (Nagelkerke R2) of the variance and with 66.6% correct classification. We analyzed 146 comments in response to the question, “Is there anything else you like to tell us.” The top 2 categories for both groups were QOL and impact of dialysis environment. The third category differed: those who would engage wrote about support, whereas those who would not engage wrote about “dialysis is the least of my worries.” Limitations: A low response rate of 12.9% limits representativeness; people who chose not to participate may have different experiences of mental health. Conclusions: Incorporating patients’ preferences and willingness to engage in support for mental health will inform future visioning for person-centered mental health care in dialysis.

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Section: Introductionmentioning

confidence: 61%

How Are Albertans “Adjusting to and Coping With” Dialysis? A Cross-Sectional Survey

Schick‐Makaroff

Berendonk

Overwater

et al. 2022

Can J Kidney Health Dis

Self Cite

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“…Many ideas have been suggested as to how PROs could be used in nephrology practice to support person-centered care, but there is a lack of robust evidence. Using PRO data at an individual level has been most explored both theoretically and empirically according to the literature and can be divided into: (1) patient use of PRO data to provide patientcentered care support, (2) patient use of their own PRO data to support patient engagement, (3) electronic collection of PROs to increase efficiency and more effectively support personcentered care and patient engagement, and (4) physician and patient use of individual-level PRO data to improve satisfaction, health, and quality of life outcomes [21].…”

Section: What Type Of Pros Exist and How Can They Be Used In Nephrology?mentioning

confidence: 99%

“…Patient and physician acceptability of routine collection of PROs in actual clinical practice is high. Despite this, the use of ePROs outcomes remains low [21].…”

Section: What Are Epros? What Are Their Advantages?mentioning

confidence: 99%

Electronic Patient-Reported Outcomes in Nephrology: Focus on Hemodialysis

Pérez-Morales

Fuster

Esteve-Simó

et al. 2022

JCM

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The success of hemodialysis (HD) treatments has been evaluated using objective measures of analytical parameters, or machine-measured parameters, despite having available validated instruments that assess patient perspective. There is an emerging interest regarding the use and relevance of patient-related outcomes (PROs). Electronic PROs (ePROs) involve the use of electronic technology, provide rapid access to this information, and are becoming more widely used in clinical trials and studies to evaluate efficacy and safety. Despite the scarce literature, this review suggests that ePROs are useful in providing a more customized and multidimensional approach to patient management and in making better clinical decisions in relevant aspects such as vascular access, duration and frequency of dialysis sessions, treatment of anemia, mental health, fatigue, and quality of life. The purpose of this review is to raise interest in the systematic use of ePROs in HD and to promote the development of studies in this field, which can respond to the gaps in knowledge and contribute to the implementation of the use of ePROs through new technologies, helping to improve the quality of health care.

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“…Patient-reported outcome measures (PROMs) are questionnaires that assess aspects of patients’ perceived health, such as HRQOL and symptom burden, and are reported by the patients themselves 12. PROMs can play an important role in solving the under-recognition of patient-relevant outcomes by providing insight into and facilitating communication about patients’ HRQOL, symptoms and needs 2 7 13–16. Integration of PROMs into routine care has the potential to contribute to a more person-centred approach, incorporating patients’ experiences and needs complementary to traditional clinical measures.…”

Section: Introductionmentioning

confidence: 99%

Discussing results of patient-reported outcome measures (PROMs) between patients and healthcare professionals in routine dialysis care: a qualitative study

et al. 2022

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ObjectivesPatient-reported outcome measures (PROMs) provide insight into patients’ experienced health and needs, and can improve patient–professional communication. However, little is known about how to discuss PROM results. This study aimed to provide in-depth knowledge of patients’ and healthcare professionals’ experiences with and perspectives on discussing PROM results as part of routine dialysis care.DesignA qualitative study was performed using an interpretive description approach. Individual semistructured interviews were conducted with 22 patients and healthcare professionals. Interviews focused on general and specific situations (eg, addressing sensitive topics or when no medical treatment is available). Interviews were transcribed verbatim and analysed inductively using thematic analysis.SettingParticipants were purposively sampled from eight dialysis centres across the Netherlands.ParticipantsInterviews were conducted with 10 patients receiving dialysis treatment and 12 healthcare professionals (nephrologists and nurses).ResultsPatients and healthcare professionals provided practical guidance for optimal discussion about PROM results. First, patients and healthcare professionals emphasised that PROM results should always be discussed and indicated how to create a suitable setting, adequately prepare, deal with time constraints and use PROMs as a tool for personalised holistic consultations. Second, patients should actively participate and healthcare professionals should take a guiding role. A trusting patient–professional relationship was considered a prerequisite and patient–professional interaction was described as a collaboration in which both contribute their knowledge, experiences and ideas. Third, follow-up after discussing PROM results was considered important, including evaluations and actions (eg, symptom management) structurally embedded into the multidisciplinary treatment process. These general themes also applied to the specific situations, for example: results should also be discussed when no medical treatment is available. Though, healthcare professionals were expected to take more initiative and a leading role when discussing sensitive topics.ConclusionsThis study provides insight into how to organise and conduct conversations about PROM results and lays the foundation for training healthcare professionals to optimally discuss PROM results in routine nephrology care. Further research is needed to provide guidance on follow-up actions in response to specific PROM results.

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An Evidence-Based Theory About PRO Use in Kidney Care: A Realist Synthesis

Cited by 10 publications

References 124 publications

How Are Albertans “Adjusting to and Coping With” Dialysis? A Cross-Sectional Survey

How Are Albertans “Adjusting to and Coping With” Dialysis? A Cross-Sectional Survey

Electronic Patient-Reported Outcomes in Nephrology: Focus on Hemodialysis

Discussing results of patient-reported outcome measures (PROMs) between patients and healthcare professionals in routine dialysis care: a qualitative study

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