scholarly journals Perspectives and experiences of patients and healthcare professionals with geriatric assessment in chronic kidney disease: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Carlijn G. N. Voorend ◽  
Noeleen C. Berkhout-Byrne ◽  
Yvette Meuleman ◽  
Simon P. Mooijaart ◽  
Willem Jan W. Bos ◽  
...  
Keyword(s):  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Outcomes ◽  
Geriatric Assessment ◽  
Clinical Care ◽  
Treatment Options ◽  
Routine Care ◽  
Treatment Team ◽  
Dutch Hospital ◽  
Additional Support

Abstract Background Older patients with end-stage kidney disease (ESKD) often live with unidentified frailty and multimorbidity. Despite guideline recommendations, geriatric assessment is not part of standard clinical care, resulting in a missed opportunity to enhance (clinical) outcomes including quality of life in these patients. To develop routine geriatric assessment programs for patients approaching ESKD, it is crucial to understand patients’ and professionals’ experiences with and perspectives about the benefits, facilitators and barriers for geriatric assessment. Methods In this qualitative study, semi-structured focus group discussions were conducted with ESKD patients, caregivers and professionals. Participants were purposively sampled from three Dutch hospital-based study- and routine care initiatives involving geriatric assessment for (pre-)ESKD care. Transcripts were analysed inductively using thematic analysis. Results In six focus-groups, participants (n = 47) demonstrated four major themes: (1) Perceived characteristics of the older (pre)ESKD patient group. Patients and professionals recognized increased vulnerability and (cognitive) comorbidity, which is often unrelated to calendar age. Both believed that often patients are in need of additional support in various geriatric domains. (2) Experiences with geriatric assessment. Patients regarded the content and the time spent on the geriatric assessment predominantly positive. Professionals emphasized that assessment creates awareness among the whole treatment team for cognitive and social problems, shifting the focus from mainly somatic to multidimensional problems. Outcomes of geriatric assessment were observed to enhance a dialogue on suitability of treatment options, (re)adjust treatment and provide/seek additional (social) support. (3) Barriers and facilitators for implementation of geriatric assessment in routine care. Discussed barriers included lack of communication about goals and interpretation of geriatric assessment, burden for patients, illiteracy, and organizational aspects. Major facilitators are good multidisciplinary cooperation, involvement of geriatrics and multidisciplinary team meetings. (4) Desired characteristics of a suitable geriatric assessment concerned the scope and use of tests and timing of assessment. Conclusions Patients and professionals were positive about using geriatric assessment in routine nephrology care. Implementation seems achievable, once barriers are overcome and facilitators are endorsed. Geriatric assessment in routine care appears promising to improve (clinical) outcomes in patients approaching ESKD.

scholarly journals Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Glen James ◽  
Elisabeth Nyman ◽  
Marcy Fitz-Randolph ◽  
Anna Niklasson ◽  
Katarina Hedman ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Care ◽  
Study Patient ◽  
Retrospective Data ◽  
Data Set ◽  
Patient Reported ◽  
Key Concepts

BACKGROUND Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. OBJECTIVE The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. METHODS Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. RESULTS The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. CONCLUSIONS This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

33 Development of an intervention to support lung cancer patients and their clinicians when considering systematic anti-cancer therapy: the pact study, a prospective multi-centre multi-methods five-stage qualitative study

2018 ◽  
Vol 8 (3) ◽  
pp. 372.1-372
Author(s):  
Annmarie Nelson ◽  
Anthony Byrne ◽  
Stephanie Sivell ◽  
Mirella Longo ◽  
Simon Noble ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Decision Making ◽  
Qualitative Study ◽  
Narrative Analysis ◽  
Clinical Decision Making ◽  
Care Pathway ◽  
Participant Observation ◽  
Clinical Care ◽  
Treatment Options ◽  
Nsclc Patients

BackgroundThe NHS aspires to place patients’ needs wishes and preferences at the heart of a clinical decision-making; however it is not clear how this can be routinely implemented. One example is the patient clinical care pathway for patients diagnosed with advanced non-small cell lung cancer (NSCLC) where there may be misunderstanding of the extent of disease prognosis and aims of treatment.AimTo understand how treatment decisions are made for NSCLC patients and map the decisions pathway.MethodologyPACT is a prospective multi-centre multi-methods five-stage qualitative study. Non-participant observation of MDT meetings (n=12) determined patients’ allocation to treatment. Non-participant observation of patient-clinician consultations (n=14) explored communication of treatment options and decision-making. Interviews with patients/companions and clinicians (n=27) explored perception of treatment options and involvement in decision-making. Mediated discourse thematic framework and narrative analysis were used to analyse the data. An expert consensus meeting (n=33) finalised the content and format of a proposed intervention.ResultsFor NSCLC patients decision making was a process rather than a single event. Patients’ priorities and preferences were not routinely or intrinsically part of the clinical pathway and arose according to the skills/attitudes of the clinician and the confidence/awareness of the patient. The interviews illustrate the uncertainty for patients around treatment considerations and highlighted the importance of knowing patients’ priorities and preferences.ConclusionCurrent pathway for NSCLC patients focuses on clinical management at the expense of patient-centred care. However clinicians’ attitude towards hope for patients with non-curative diagnosis is instrumental to any process change.

scholarly journals Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study

10.2196/18548 ◽  
2020 ◽  
Vol 22 (7) ◽  
pp. e18548
Author(s):  
Glen James ◽  
Elisabeth Nyman ◽  
Marcy Fitz-Randolph ◽  
Anna Niklasson ◽  
Katarina Hedman ◽  
...  
Keyword(s):  
Health Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Clinical Care ◽  
Study Patient ◽  
Retrospective Data ◽  
Data Set ◽  
Patient Reported ◽  
Key Concepts

Background Chronic kidney disease (CKD) is a major global health burden, and is associated with increased adverse outcomes, poor quality of life, and substantial health care costs. While there is an increasing need to build patient-centered pathways for improving CKD management in clinical care, data in this field are scarce. Objective The aim of this study was to understand patient-reported experiences, symptoms, outcomes, and treatment journeys among patients with CKD through a retrospective and qualitative approach based on data available through PatientsLikeMe (PLM), an online community where patients can connect and share experiences. Methods Adult members (aged ≥18 years) with self-reported CKD within 30 days of enrollment, who were not on dialysis, and registered between 2011 and 2018 in the PLM community were eligible for the retrospective study. Patient demographics and disease characteristics/symptoms were collected from this retrospective data set. Qualitative data were collected prospectively through semistructured phone interviews in a subset of patients, and questions were oriented to better understand patients’ experiences with CKD and its management. Results The retrospective data set included 1848 eligible patients with CKD, and median age was 56 years. The majority of patients were female (1217/1841, 66.11%) and most were US residents (1450/1661, 87.30%). Of the patients who reported comorbidities (n=1374), the most common were type 2 diabetes (783/1374, 56.99%), hypertension (664/1374, 48.33%), hypercholesterolemia (439/1374, 31.95%), and diabetic neuropathy (376/1374, 27.37%). The most commonly reported severe or moderate symptoms in patients reporting these symptoms were fatigue (347/484, 71.7%) and pain (278/476, 58.4%). In the qualitative study, 18 eligible patients (13 females) with a median age of 60 years and who were mainly US residents were interviewed. Three key concepts were identified by patients to be important to optimal care and management: listening to patient needs, coordinating health care across providers, and managing clinical care. Conclusions This study provides a unique source of real-world information on the patient experience of CKD and its management by utilizing the PLM network. The results reveal the challenges these patients face living with an array of symptoms, and report key concepts identified by patients that can be used to further improve clinical care and management and inform future CKD studies.

scholarly journals Design of a consensus-based geriatric assessment tailored for older chronic kidney disease patients: results of a pragmatic approach

2021 ◽  
Author(s):  
Carlijn G. N. Voorend ◽  
◽  
Hanneke Joosten ◽  
Noeleen C. Berkhout-Byrne ◽  
Adry Diepenbroek ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Geriatric Assessment ◽  
Nurse Practitioners ◽  
Older Patients ◽  
Selection Criteria ◽  
Clinical Care ◽  
Consensus Meeting ◽  
Guideline Recommendation ◽  
Pragmatic Approach

Abstract Purpose Unidentified cognitive decline and other geriatric impairments are prevalent in older patients with advanced chronic kidney disease (CKD). Despite guideline recommendation of geriatric evaluation, routine geriatric assessment is not common in these patients. While high burden of vascular disease and existing pre-dialysis care pathways mandate a tailored geriatric assessment, no consensus exists on which instruments are most suitable in this population to identify geriatric impairments. Therefore, the aim of this study was to propose a geriatric assessment, based on multidisciplinary consensus, to routinely identify major geriatric impairments in older people with advanced CKD. Methods A pragmatic approach was chosen, which included focus groups, literature review, inventory of current practices, an expert consensus meeting, and pilot testing. In preparation of the consensus meeting, we composed a project team and an expert panel (n = 33), drafted selection criteria for the selection of instruments, and assessed potential instruments for the geriatric assessment. Results Selection criteria related to general geriatric domains, clinical relevance, feasibility, and duration of the assessment. The consensus-assessment contains instruments in functional, cognitive, psychological, somatic, patient preferences, nutritional status, and social domains. Administration of (seven) patient questionnaires and (ten) professional-administered instruments, by nurse (practitioners), takes estimated 20 and 40 min, respectively. Results are discussed in a multidisciplinary meeting including at least nephrology and geriatric expertise, informing nephrology treatment decisions, and follow-up interventions among which comprehensive geriatric assessment. Conclusion This first multidisciplinary consensus on nephrology-tailored geriatric assessment intent to benefit clinical care and enhance research comparability for older patients with advanced CKD.

MO879PROPOSAL OF A GERIATRIC ASSESSMENT TAILORED FOR OLDER CHRONIC KIDNEY DISEASE PATIENTS: RESULTS OF A PRAGMATIC CONSENSUS-BASED APPROACH

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Carlijn Voorend ◽  
Hanneke Joosten ◽  
Noeleen Berkhout-Byrne ◽  
Adry Diepenbroek ◽  
Casper Franssen ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Geriatric Assessment ◽  
Nurse Practitioners ◽  
Older Patients ◽  
Selection Criteria ◽  
Clinical Care ◽  
Consensus Meeting ◽  
Advanced Chronic Kidney Disease ◽  
Selection Of

Abstract Background and Aims Unidentified cognitive decline and other geriatric impairments are prevalent in older patients with advanced kidney disease. Despite guideline recommendation of geriatric evaluation, routine geriatric assessment is not common in these patients. While high burden of vascular disease and existing pre-dialysis care pathways mandate a tailored geriatric assessment, no consensus exists on which instruments are most suitable in this population to identify geriatric impairments. Therefore, the aim of this study was to propose a geriatric assessment, based on multidisciplinary consensus, for older people with advanced chronic kidney disease. Method A pragmatic approach was chosen to reach agreement on a suitable set of instruments to routinely identify major geriatric impairments in older patients with advanced chronic kidney disease. This approach included focus group meetings to identify criteria for the assessment, literature review to identify potential instruments, questionnaire to inventory currently used instruments, an expert consensus meeting to ensure that the selection of tests was based on input from clinical experience in nephrology and geriatrics, and pilot testing to ensure practicability. In preparation of the consensus meeting we composed a project team and an expert panel (n=33), drafted selection criteria for the selection of instruments, and assessed potential instruments for the test-set. Results Selection criteria related to general geriatric domains, clinical relevance, feasibility and duration of the assessment. The consensus-set contains instruments in functional, cognitive, psychological, somatic, patient preferences, nutritional status, and social domains (Figure 1). Administration of (seven) patient questionnaires and (ten) professional-administered instruments, by nurse (practitioners), takes estimated 20 and 40 minutes, respectively. Results are discussed in a multi-disciplinary meeting including at least nephrology and geriatric expertise, informing nephrology treatment decisions and follow-up interventions amongst which comprehensive geriatric assessment. Conclusion This first multi-disciplinary consensus on nephrology-tailored geriatric assessment intent to benefit clinical care and enhance research comparability for older patients with advanced chronic kidney disease. The proposed geriatric assessment is currently implemented in multiple hospitals and studies. Future initiatives and studies should provide insights on effectiveness, feasibility, patient’s satisfaction and, value for shared treatment decision making and outcome improvement.

Exploring Patients' Experiences After Chronic Kidney Disease Diagnosis: A Qualitative Study

2020 ◽  
Vol 47 (1) ◽  
pp. 67
Author(s):  
Areti Stavropoulou ◽  
Michael Rovithis ◽  
Maria G. Grammatikopoulou ◽  
Konstantina Kyriakidi ◽  
Andriani Pylarinou ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Disease Diagnosis

scholarly journals Long-term views on chronic kidney disease research priorities among stakeholders engaged in a priority-setting partnership: A qualitative study

2018 ◽  
Vol 21 (6) ◽  
pp. 1142-1149 ◽  
Author(s):  
Meghan J. Elliott ◽  
Joanna E. M. Sale ◽  
Zahra Goodarzi ◽  
Linda Wilhelm ◽  
Andreas Laupacis ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Qualitative Study ◽  
Priority Setting ◽  
Research Priorities ◽  
Disease Research ◽  
A Priority ◽  
Priority Setting Partnership

scholarly journals Molecular Subtypes and Precision Oncology in Intrahepatic Cholangiocarcinoma

2021 ◽  
Vol 10 (13) ◽  
pp. 2803
Author(s):  
Carolin Czauderna ◽  
Martha M. Kirstein ◽  
Hauke C. Tews ◽  
Arndt Vogel ◽  
Jens U. Marquardt
Keyword(s):  
Clinical Care ◽  
Treatment Options ◽  
Treatment Strategies ◽  
Specific Treatment ◽  
Growth Factor Receptor ◽  
Treatment Modalities ◽  
Precision Oncology ◽  
Recurrence Rates ◽  
Isocitrate Dehydrogenase 1 ◽  
Liver Cancers

Cholangiocarcinomas (CCAs) are the second-most common primary liver cancers. CCAs represent a group of highly heterogeneous tumors classified based on anatomical localization into intra- (iCCA) and extrahepatic CCA (eCCA). In contrast to eCCA, the incidence of iCCA is increasing worldwide. Curative treatment strategies for all CCAs involve oncological resection followed by adjuvant chemotherapy in early stages, whereas chemotherapy is administered at advanced stages of disease. Due to late diagnosis, high recurrence rates, and limited treatment options, the prognosis of patients remains poor. Comprehensive molecular characterization has further revealed considerable heterogeneity and distinct prognostic and therapeutic traits for iCCA and eCCA, indicating that specific treatment modalities are required for different subclasses. Several druggable alterations and oncogenic drivers such as fibroblast growth factor receptor 2 gene fusions and hotspot mutations in isocitrate dehydrogenase 1 and 2 mutations have been identified. Specific inhibitors have demonstrated striking antitumor activity in affected subgroups of patients in phase II and III clinical trials. Thus, improved understanding of the molecular complexity has paved the way for precision oncological approaches. Here, we outline current advances in targeted treatments and immunotherapeutic approaches. In addition, we delineate future perspectives for different molecular subclasses that will improve the clinical care of iCCA patients.

scholarly journals Efficacy and safety of gout flare prophylaxis and therapy use in people with chronic kidney disease: a Gout, Hyperuricemia and Crystal-Associated Disease Network (G-CAN)-initiated literature review

2021 ◽  
Vol 23 (1) ◽  
Author(s):  
Huai Leng Pisaniello ◽  
Mark C. Fisher ◽  
Hamish Farquhar ◽  
Ana Beatriz Vargas-Santos ◽  
Catherine L. Hill ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Renal Function ◽  
Kidney Disease ◽  
Literature Review ◽  
Interleukin 1 ◽  
Treatment Options ◽  
Cochrane Library ◽  
Efficacy And Safety ◽  
Clinical Trial Results ◽  
Gout Flare

AbstractGout flare prophylaxis and therapy use in people with underlying chronic kidney disease (CKD) is challenging, given limited treatment options and risk of worsening renal function with inappropriate treatment dosing. This literature review aimed to describe the current literature on the efficacy and safety of gout flare prophylaxis and therapy use in people with CKD stages 3–5. A literature search via PubMed, the Cochrane Library, and EMBASE was performed from 1 January 1959 to 31 January 2018. Inclusion criteria were studies with people with gout and renal impairment (i.e. estimated glomerular filtration rate (eGFR) or creatinine clearance (CrCl) < 60 ml/min/1.73 m2), and with exposure to colchicine, interleukin-1 inhibitors, non-steroidal anti-inflammatory drugs (NSAIDs), and glucocorticoids. All study designs were included. A total of 33 studies with efficacy and/or safety analysis stratified by renal function were reviewed—colchicine (n = 20), anakinra (n = 7), canakinumab (n = 1), NSAIDs (n = 3), and glucocorticoids (n = 2). A total of 58 studies reported these primary outcomes without renal function stratification—colchicine (n = 29), anakinra (n = 10), canakinumab (n = 6), rilonacept (n = 2), NSAIDs (n = 1), and glucocorticoids (n = 10). Most clinical trials excluded study participants with severe CKD (i.e. eGFR or CrCl of < 30 mL/min/1.73 m2). Information on the efficacy and safety outcomes of gout flare prophylaxis and therapy use stratified by renal function is lacking. Clinical trial results cannot be extrapolated for those with advanced CKD. Where possible, current and future gout flare studies should include patients with CKD and with study outcomes reported based on renal function and using standardised gout flare definition.

scholarly journals Evaluating clinical outcomes of routinely delivered task-shared care for depression in rural Haiti

2021 ◽  
Vol 8 ◽  
Author(s):  
Alexandra L. Rose ◽  
Ryan McBain ◽  
Jesse Wilson ◽  
Sarah F. Coleman ◽  
Emmanuel Mathieu ◽  
...  
Keyword(s):  
Mental Health ◽  
Clinical Outcomes ◽  
Positive Impact ◽  
International Health ◽  
Routine Care ◽  
Care Organization ◽  
Depression Care ◽  
Resource Limited Settings ◽  
Resource Limited ◽  
The Impact

Abstract Background There is a growing literature in support of the effectiveness of task-shared mental health interventions in resource-limited settings globally. However, despite evidence that effect sizes are greater in research studies than actual care, the literature is sparse on the impact of such interventions as delivered in routine care. In this paper, we examine the clinical outcomes of routine depression care in a task-shared mental health system established in rural Haiti by the international health care organization Partners In Health, in collaboration with the Haitian Ministry of Health, following the 2010 earthquake. Methods For patients seeking depression care betw|een January 2016 and December 2019, we conducted mixed-effects longitudinal regression to quantify the effect of depression visit dose on symptoms, incorporating interaction effects to examine the relationship between baseline severity and dose. Results 306 patients attended 2052 visits. Each visit was associated with an average reduction of 1.11 in depression score (range 0–39), controlling for sex, age, and days in treatment (95% CI −1.478 to −0.91; p < 0.001). Patients with more severe symptoms experienced greater improvement as a function of visits (p = 0.04). Psychotherapy was provided less frequently and medication more often than expected for patients with moderate symptoms. Conclusions Our findings support the potential positive impact of scaling up routine mental health services in low- and middle-income countries, despite greater than expected variability in service provision, as well as the importance of understanding potential barriers and facilitators to care as they occur in resource-limited settings.

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