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Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

ABSTRACT: BACKGROUND:The transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs. METHODS:Data from semi-structured interviews with patients and their partners (n?=?22 couples) were analysed using theoretical thematic analysis to identify and define constructs related to quality of life (QOL). Next, items addressing these constructs were derived from the interviews. Then, cognitive interviews were conducted with patients with chronic kidney disease and their partners (n?=?5 couples) to assess the face validity and comprehensibility of the items. Lastly, preliminary psychometric properties were evaluated in a sample of patients preparing to start dialysis and their partners (n?=?83 couples). RESULTS:Three themes related to QOL were identified, namely dialysis expectations, accepting dialysis and dyadic relationship characteristics. The cognitive interviews refined the SDQ and established its face validity. Psychometric assessments indicated that overall the items performed well and did not show significant floor or ceiling effects. Good internal consistency was found within the three domains, and items correlated within the domains. CONCLUSIONS:The SDQ is a measure (34 items) that assesses key psychological and interpersonal factors in patients and their partners as they start dialysis. It shows good preliminary psychometric properties; however, a large-scale field trial is needed to establish its validity. Once validated, it could offer a clinically useful tool to assist clinicians in preparing patients and partners for dialysis.

SUBMITTER: Moore C

PROVIDER: S-EPMC7648298 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

Moore Currie C Wearden Alison A Carter Lesley-Anne LA Mitra Sandip S Skevington Suzanne M SM

Health and quality of life outcomes 20201107 1

<h4>Background</h4>The transition onto dialysis is a stressful time that affects both patients and their partners. Research suggests that psychological and interpersonal characteristics within the couple are related to how well they adapt to dialysis. The aim of this multi-phase, mixed methods study was to develop a measure, the Starting Dialysis Questionnaire (SDQ), that is applicable to both patients and their partners and assesses their own thoughts and feelings about these constructs.<h4>Met ...[more]

PMID: 33160381

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Project description:BackgroundQuality of life (QOL) is important to patients with end stage renal disease and their partners. Despite the first 12?weeks being a critical time in the treatment pathway, limited research exists which examines how the transition onto dialysis impacts QOL. In this study we measured QOL in patients and their partners at pre-dialysis and over the first 12?weeks on dialysis to investigate QOL during this crucial period.MethodsPatients and their partners, recruited from 10 renal units in England, completed questionnaires at pre-dialysis (n?=?166 participants, 83 couples), 6?weeks (n?=?90 participants, 45 couples) and 12?weeks (n?=?78, 39 couples) after starting dialysis. On each occasion participants completed a QOL questionnaire (WHOQOL-BREF). Multilevel modelling accommodated the nested structure of couples with repeated measures within participants. Three-level random intercept models estimated changes in WHOQOL general QOL and its four domains (Physical, Psychological, Social and Environment). Two-level random intercept models assessed the relationship between baseline clinical and socio-demographic variables with changes in general QOL.ResultsPatients reported positive changes in general QOL from pre-dialysis to 6?weeks (??=?0.42, p?<?0.001, 95% CI 0.19, 0.65) and from pre-dialysis to 12?weeks (??=?0.47, p?<?0.001, 95% CI 0.24, 0.71). Partners' general QOL decreased significantly from pre-dialysis to 6?weeks (??=?-?0.24, p?=?0.04, 95% CI -0.47, -?0.01) but returned to its original level at 12?weeks. Patients reported improvements in the physical domain between pre-dialysis and 12?weeks (??=?6.56, p?<?0.004, 95% CI 2.10, 11.03). No other domains changed significantly in patients or partners. Only in patients were there significant associations between moderator variables and general QOL. High comorbidity risk level and diabetes were associated with poorer QOL at pre-dialysis whereas being female and having an arteriovenous fistula were linked with improvements in general QOL.ConclusionsPatients reported significant improvements in their general and physical QOL after starting dialysis. Partners' general QOL worsened after patients started dialysis but improved by 12?weeks. Both patients and partners may benefit from additional educational and counselling services in the lead up to, and immediately after starting dialysis, which could facilitate the transition onto dialysis and improve QOL in both.Study registrationThis study was adopted on the NIHR Clinical Research Network (UK). The details of this study are registered on the Research Registry website (www.researchregistry.com). The identifier for this study is researchregistry2574.

Project description:BACKGROUND:Although the importance of care coordination (CC) is well-recognized, cancer patients often receive poorly coordinated care across varied care settings and different oncology providers. Efforts to improve cancer care are hampered by lack of adequate measures. In this two-part, mixed-method study, we describe the development, refinement, and validation of a new care coordination instrument (CCI) designed to assess cancer patients' perception of CC. METHODS:In Study 1, an initial CCI was developed incorporating questions based on literature review. The items were then modified following four field tests conducted in a large academic hospital with oncology nurses (n?=?20) and cancer patients (n?=?120). This modified instrument was used to determine whether the CCI was able to distinguish CC between two practices (30 GI and 30 myeloma patients) within the same hospital setting. In Study 2, 68 patients receiving community-based care participated in seven focus groups. Based on these discussions, the CCI items were again refined, and psychometric evaluation was conducted to assess the quality of the instrument. RESULTS:Based on field tests, 3 domains of the CCI, Communication, Navigation, and Operational, were defined as critical components of CC. The Operational domain evaluates efficiency of care and is unique to this CCI. The field test demonstrated that GI patients reported significantly better CC Overall and for the Communication and Navigation domains (all p?<?.05). In Study 2, patients expressed concordance with the CCI items and their CC experiences, establishing validity of the CCI. Qualitative analysis of the focus group discussions indicated that the items with the highest frequencies of participants' comments were related to the concepts of Navigator, Team, Survey, and Communication. Quantitative analysis identified items with a limited response range or high rates of "neutral" responses; accordingly, those items were removed. The final CCI survey is a 29 item, multiple-choice questionnaire with excellent reliability, Cronbach's ??=?.922. CONCLUSIONS:We developed a novel, patient-centered tool with excellent psychometric properties that can be utilized across varied practice settings to assess patients' perception of cancer care coordination. TRIAL REGISTRATION:Not required; retrospectively registered ClinicalTrials.gov NCT03594006 20 July 2018.

Project description:Background and objectivesIt is uncertain whether primary care physician continuity of care associates with a lower risk of death and hospitalization among patients transitioning to maintenance dialysis.Design, setting, participants, & measurementsUsing provincial-linked administrative databases in Ontario, Canada, we conducted a population-based study of incident patients who initiated maintenance dialysis between 2005 and 2014 and survived for at least 90 days. We defined high primary care physician continuity as both a high usual provider of care index (where >75% of primary care physician visits occurred with the same primary care physician) in the 2 years before dialysis (an established measure of primary care physician continuity) and at least one visit with the same primary care physician in the 90 days after dialysis initiation. We used propensity scores to match a group of patients with high and low continuity so that indicators of baseline health were similar. The primary outcome was all-cause mortality, and secondary outcomes included all-cause and disease-specific hospitalizations during the 2 years after maintenance dialysis initiation.ResultsWe identified 19,099 eligible patients. There were 6612 patients with high primary care physician continuity, of whom 6391 (97%) were matched to 6391 patients with low primary care physician continuity. High primary care physician continuity was not associated with a lower risk of mortality (14.5 deaths per 100 person-years versus 15.2 deaths per 100 person-years; hazard ratio, 0.96; 95% confidence interval, 0.89 to 1.02). There was no difference in the rate of all-cause hospitalizations (hazard ratio, 0.96; 95% confidence interval, 0.92 to 1.01), and high primary care physician continuity was not associated with a lower risk of any disease-specific hospitalization, except for those related to diabetes (hazard ratio, 0.88; 95% confidence interval, 0.80 to 0.97).ConclusionsHigh primary care physician continuity before and during the transition to maintenance dialysis was not associated with a lower risk of mortality or all-cause hospitalization.

Dataset Information

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

Publications

Development of a measure for patients preparing to start dialysis and their partners: The Starting Dialysis Questionnaire (SDQ).

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