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Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

ABSTRACT: BACKGROUND:Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making. METHOD:A mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively. RESULTS:The participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p?=?0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p?=?0.006) but no significant difference on the readiness score (87% versus 84%; p?=?0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p?=?0.935). Interview data informed the interpretation of these results. CONCLUSIONS:Although there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results. TRIAL REGISTRATION:The full trial protocol is available at ClinicalTrials. Gov ( NCT03868800 ). The study has been registered retrospectively.

SUBMITTER: Finderup J

PROVIDER: S-EPMC7409698 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

Finderup Jeanette J Lomborg Kirsten K Jensen Jens Dam JD Stacey Dawn D

BMC nephrology 20200805 1

<h4>Background</h4>Patients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and a ...[more]

PMID: 32758177

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Project description:BackgroundMany older patients approaching end-stage kidney disease have to decide whether to go for dialysis or non-dialytic conservative care (CC). Shared decision-making is recommended to align the treatment plan with the patient's preferences and values. Little is known about older patients' experiences with shared decision-making on dialysis or CC.MethodsWe performed a survey study, in collaboration with the Dutch Kidney Patients Association, in 99 patients aged ≥70 years who had chosen dialysis (n = 75) or CC (n = 24) after a shared decision-making process involving an experienced multidisciplinary team.ResultsPatients stated to be overall satisfied with the shared decision-making process (% with score 6-10 on 11-point Likert scale, dialysis versus CC: 93% vs. 91%, P = 0.06), and treatment decision (87% vs. 91%, P = 0.03). However, patients also reported negative experiences, especially those who had chosen dialysis. Such negative experiences were related to the timing, informing, and level of decision-making being shared. More patients who selected dialysis indicated to have felt forced to make a decision, mostly due to the circumstances, such as their deteriorating health or kidney function, or by their nephrologist (31% vs. 5%, P = 0.01). Also, patients who selected dialysis mentioned a perceived lack of choice as most common reason for choosing dialysis, and 55% considered their own opinion as most important rather than their nephrologists' or relatives' opinion compared to 90% of the patients who had chosen CC (P = 0.02). A subset of patients who had chosen dialysis still doubted their treatment decision compared to no patient who had chosen CC (17% vs. 0%, P = 0.03).ConclusionsOlder patients reported contrasting experiences with shared decision-making on dialysis or CC. Despite high overall satisfaction, the underlying negative experiences illustrate important but modifiable barriers to an optimal shared decision-making process.

Project description:BackgroundMedication problems among patients with long-term conditions (LTCs) are well documented. Measures to support LTC management include: medicine optimisation services by community pharmacists such as the Medicine Use Review (MUR) service in England, implementation of shared decision making (SDM), and the availability of rapid access clinics in primary care. This study aimed to investigate the experience of patients with LTCs about SDM including medication counselling and their awareness of community pharmacy medication review services.MethodsA mixed research method with a purposive sampling strategy to recruit patients was used. The quantitative phase involved two surveys, each requiring a sample size of 319. The first was related to SDM experience and the second to medication counselling at discharge. Patients were recruited from medical wards at St. George's and Croydon University Hospitals.The qualitative phase involved semi-structured interviews with 18 respiratory patients attending a community rapid access clinic. Interviews were audio-recorded and transcribed verbatim. Thematic analysis using inductive/deductive approaches was employed. Survey results were analysed using descriptive statistics.ResultsThe response rate for surveys 1 and 2 survey was 79% (n?=?357/450) and 68.5% (240/350) respectively. Survey 1 showed that although 70% of patients had changes made to their medications, only 40% were consulted about them and two-thirds (62.2%) wanted to be involved in SDM. In survey 2, 37.5% of patients thought that medication counselling could be improved. Most patients (88.8%) were interested in receiving the MUR service; however 83% were not aware of it. The majority (57.9%) were interested in receiving their discharge medications from community pharmacies. The interviews generated three themes; lack of patient-centered care and SDM, minimal medication counselling provided and lack of awareness about the MUR service.ConclusionAlthough patients wanted to take part in SDM, yet SDM and medication counselling are not optimally provided. Patients were interested in the MUR service; however there was lack of awareness and referral for this service. The results propose community pharmacy as a new care pathway for medication supply and counselling post discharge. This promotes a change of health policy whereby community-based services are used to enhance the performance of acute hospitals.

Project description:BACKGROUND:Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. METHODS:We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n =?23 patients; n =?26 providers). RESULTS:We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. CONCLUSIONS:We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

Project description:BackgroundShared decision-making (SDM) is a process whereby clinicians and patients work together to select treatments based on both the patient's preferences and clinical evidence. Although patients with psychotic disorders want to participate more in decisions regarding their care, they have limited opportunities to do so because of various barriers. Knowing about health professionals' experiences with SDM is important toward achieving successful implementation. The study aim was to describe and explore health professionals' SDM experiences with patients with psychotic disorders.MethodsThree focus group interviews were conducted, with a total of 18 health professionals who work at one of three Norwegian community mental health centres where patients with psychotic disorders are treated. We applied a descriptive and exploratory approach using qualitative content analysis.ResultsHealth professionals primarily understand the SDM concept to mean giving patients information and presenting them with a choice between different antipsychotic medications. Among the barriers to SDM, they emphasized that patients with psychosis have a limited understanding of their health situation and that time is needed to build trust and alliances. Health professionals mainly understand patients with psychotic disorders as a group with limited abilities to make their own decisions. They also described the concept of SDM with little consideration of presenting different treatment options. Psychological or social interventions were often presented as complementary to antipsychotic medications, rather than as an alternative to them.ConclusionHealth professionals' understanding of SDM is inconsistent with the definition commonly used in the literature. They consider patients with psychotic disorders to have limited abilities to participate in decisions regarding their own treatment. These findings suggest that health professionals need more theoretical and practical training in SDM.

Project description:A shared decision-making tool could help elderly patients with advanced chronic kidney disease decide about initiating dialysis therapy. Because mortality may be high in the first few months after initiating dialysis therapy, incorporating early mortality predictors in such a tool would be important for an informed decision. Our objective is to derive and validate a predictive risk score for early mortality after initiating dialysis therapy.Retrospective observational cohort, with development and validation cohorts.US Renal Data System and claims data from the Centers for Medicare & Medicaid Services for 69,441 (aged ?67 years) patients with end-stage renal disease with a previous 2-year Medicare history who initiated dialysis therapy from January 1, 2009, to December 31, 2010.Demographics, predialysis care, laboratory data, functional limitations, and medical history.All-cause mortality in the first 3 and 6 months.Predicted mortality by logistic regression.The simple risk score (total score, 0-9) included age (0-3 points), low albumin level, assistance with daily living, nursing home residence, cancer, heart failure, and hospitalization (1 point each), and showed area under the receiver operating characteristic curve (AUROC)=0.69 in the validation sample. A comprehensive risk score with additional predictors was also developed (with AUROC=0.72, high concordance between predicted vs observed risk). Mortality probabilities were estimated from these models, with the median score of 3 indicating 12% risk in 3 months and 20% in 6 months, and the highest scores (?8) indicating 39% risk in 3 months and 55% in 6 months.Patients who did not choose dialysis therapy and did not have a 2-year Medicare history were excluded.Routinely available information can be used by patients with chronic kidney disease, families, and their nephrologists to estimate the risk of early mortality after dialysis therapy initiation, which may facilitate informed decision making regarding treatment options.

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Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

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Choice of dialysis modality: patients' experiences and quality of decision after shared decision-making.

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