Dataset Information

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

ABSTRACT:

Background

Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD).

Methods

A cross-sectional study was conducted with 346 patients in renal care. The main variables were patients' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference-based patient participation measure.

Results

Overall, 57%-84% of the patients reached a sufficient level of preference-based patient participation on the items, while 2%-12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment.

Conclusion

This study shows that, although many patients reach a sufficient level of preference-based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients' preferences are needed for healthcare professionals to support person-centred patient participation.

Patient or public contribution

The 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.

SUBMITTER: Martinsson C

PROVIDER: S-EPMC8483194 | biostudies-literature | 2021 Oct

REPOSITORIES: biostudies-literature

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Publications

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

Martinsson Caroline C Uhlin Fredrik F Wenemark Marika M Eldh Ann Catrine AC

Health expectations : an international journal of public participation in health care and health policy 20210801 5

<h4>Background</h4>Patient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients' experiences of participation in conjunction with their preferences, particularly in long-term healthcare. The aim of this study was to investigate the extent and variation of preference-based patient participation in patients with end-stage kidney disease (ESKD).<h4>Methods</h4>A cross-sectional study was conducted with 346 patients in renal care ...[more]

PMID: 34337836

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Project description:BackgroundAmong those elements establishing decent quality of care from a patient perspective, opportunities to participate in accord with one's individual needs and preferences are central. To date, little is known the extent of preference-based patient participation in kidney care, and what facilitates optimal conditions. This study investigated i) preference-based patient participation in kidney care over time, and ii) the effects of interventions designed to enhance person-centred patient participation.MethodsA quasi-experimental study was conducted across nine kidney care sites in southeast Sweden. A cohort of 358 patients with stage IV chronic kidney disease (eGRF 15-19 ml/min) or V (eGRF < 15 mL/min) entered the study. Of these, 245 patients (with kidney replacement therapy or intermittent outpatient visits only) completed a survey on patient participation at four time points: every six months from August 2019 to May 2021, patients reported their preferences for and experiences of participation using the validated Patient Preferences for Patient Participation tool, the 4Ps. Between the first and second data collection points, interventions were provided for designated staff to facilitate person-centred participation, using two strategies for two subgroups at three sites each: the managers receiving a bundle of information via e-mail on patient participation in a standard dissemination procedure (three sites), or an additional half-year support program for implementation offered to 1-2 staff per site (three sites), with no intervention for a control group (three sites). The differences in 4Ps data between groups were analysed using multilevel ordinal regression.ResultsOver time and across all sites, most patients' experiences of participation fully or almost fully matched their engagement preferences (57%-90%). Still, up to 12% of patient reports indicated that their preferences and experiences were insufficiently matched: in these cases, the patients had preferred to be more involved than they had experienced, for example, in making healthcare plans and setting health-related goals. The interventions did not affect the levels of preference-based participation, but patients in the control group sites had slightly more consistent matches.ConclusionsLiving with kidney failure necessitates patient engagement, but opportunities to participate in accordance with one's preferences are not fully provided for all patients. Additional efforts to support a common understanding and to ensure person-centred patient participation is still needed.

Project description:ObjectivesThe Global Kidney Health Atlas (GKHA) is a multinational, cross-sectional survey designed to assess the current capacity for kidney care across all world regions. The 2017 GKHA involved 125 countries and identified significant gaps in oversight, funding and infrastructure to support care for patients with kidney disease, especially in lower-middle-income countries. Here, we report results from the survey for the second iteration of the GKHA conducted in 2018, which included specific questions about health financing and oversight of end-stage kidney disease (ESKD) care worldwide.SettingA cross-sectional global survey.ParticipantsKey stakeholders from 182 countries were invited to participate. Of those, stakeholders from 160 countries participated and were included.Primary outcomesPrimary outcomes included cost of kidney replacement therapy (KRT), funding for dialysis and transplantation, funding for conservative kidney management, extent of universal health coverage, out-of-pocket costs for KRT, within-country variability in ESKD care delivery and oversight systems for ESKD care. Outcomes were determined from a combination of desk research and input from key stakeholders in participating countries.Results160 countries (covering 98% of the world's population) responded to the survey. Economic factors were identified as the top barrier to optimal ESKD care in 99 countries (64%). Full public funding for KRT was more common than for conservative kidney management (43% vs 28%). Among countries that provided at least some public coverage for KRT, 75% covered all citizens. Within-country variation in ESKD care delivery was reported in 40% of countries. Oversight of ESKD care was present in all high-income countries but was absent in 13% of low-income, 3% of lower-middle-income, and 10% of upper-middle-income countries.ConclusionSignificant gaps and variability exist in the public funding and oversight of ESKD care in many countries, particularly for those in low-income and lower-middle-income countries.

Project description:BACKGROUND:Populations of low and middle-income countries are ageing rapidly; there is a need for policies that support an increase in the duration of old age lived in good health. There is growing evidence that social participation protects against morbidity and mortality, but few studies explore patterns of social participation. Analysis of baseline quantitative and qualitative data from a trial of the impact of Elders' Clubs on health and well-being in the hill country of Sri Lanka provided an opportunity to better understand the extent of, and influences on, social participation among elders. METHODS:We analysed data from 1028 baseline survey respondents and from 12 focus group discussions. Participants were consenting elders, aged over 60 years, living in Tamil tea plantation communities or Sinhala villages in 40 randomly selected local government divisions. We assessed participation in organised social activities using self-reported attendance during the previous year. Multivariable regression analyses were used to explore associations with community and individual factors. The quantitative findings were complemented by thematic analysis of focus group discussion transcripts. RESULTS:Social participation in these poor, geographically isolated communities was low: 63% reported 'no' or 'very low' engagement with organised activities. Plantation community elders reported significantly less participation than village elders. Attendance at religious activities was common and valued. Individual factors with significant positive association with social participation in multivariable analyses were being younger, male, Sinhala, married, employed, and satisfied with one's health. Domestic work and cultural constraints often prevented older women from attending organised activities. CONCLUSIONS:Elders likely to benefit most from greater social contact are those most likely to face barriers, including older women, the oldest old, those living alone and those in poor health. Understanding these barriers can inform strategies to overcome them. This might include opportunities for both informal and formal social contact close to elders' homes, consulting elders, providing childcare, improving physical access, advocating with elders' families and religious leaders, and encouraging mutual support and inter-generational activities. Influences on social participation are interrelated and vary with the history, culture and community environment. Further study is required in other low and middle-income country contexts.

Project description:BackgroundsPatients with End-Stage Kidney Disease (ESKD) receiving Hemodialysis (HD) face significant psychosocial and physical challenges. Improving their resilience by integrating protective factors is important for effectively managing the difficulties associated with the disease and its treatment. This study intended to identify factors associated with resilience among patients with ESKD receiving HD.MethodsA cross-sectional analytical study was done among 143 patients with ESKD receiving HD in a Tertiary Hospital "A" in Nepal. A non-probability convenience sampling technique was used to select samples. Data were collected following ethical approval through face-to-face interviews. A Nepali version of socio-demographic and clinical characteristics-related questions and five standardized and structured instruments were used to measure resilience, family support, illness cognition, self-efficacy, and self-esteem. Data were analyzed with descriptive and inferential statistics (i.e., correlation and multiple linear regression) using the Statistical Package for Social Science Software version 16.ResultsThe respondents had intermediate (49.0%), low (27.3%), and high (23.7%) levels of resilience. Illness cognition, self-efficacy, and self-esteem had statistically significant positive associations with resilience. However, age was negatively associated with resilience. These associated variables account for 64.0% of the variance in resilience (Adjusted R2 = 0.64).ConclusionsThe highest proportion of patients with ESKD receiving HD had an intermediate level of resilience. Factors such as illness cognition, self-efficacy, and self-esteem play an important role in enhancing resilience while advancing age appears to diminish it. Therefore, focusing on enhancing illness cognition, self-efficacy, and self-esteem with special care on older patients may be an effective strategy for improving resilience in patients with ESKD receiving HD.Trial registrationNot applicable.

Dataset Information

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

Background

Methods

Results

Conclusion

Patient or public contribution

Publications

Preference-based patient participation for most, if not all: A cross-sectional study of patient participation amongst persons with end-stage kidney disease.

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