A Population-Based Mortality Follow-Back Survey Evaluating Good Death for Cancer and Noncancer Patients: A Randomized Feasibility Study

Nakazawa, Yasuo; Takeuchi, Emi; Sato, Kazuki; Ogawa, Asao; Kinoshita, Hiroya; Kizawa, Yoshiyuki; Morita, Tatsuya; Kato, Masashi

doi:10.1016/j.jpainsymman.2020.07.013

Cited by 4 publications

(2 citation statements)

References 23 publications

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“…The quality of care and the time period assessed varied across the survey instruments reviewed, with some focused on the quality of care delivered during the last admission within a particular healthcare setting such as a hospice or hospital, while other instruments focussed on the care provided by a particular service such as palliative care [ 19 , 20 , 55 – 61 ]. Some surveys took a wider population-based approach and included all bereaved people of those who died within a particular time frame, for example the last 3 months of life, using death registration or a national health data set to access the sample population [ 15 , 50 , 51 , 62 – 64 ]. The mode of administration varied across surveys reviewed, with the majority utilising a questionnaire and postal mode of administration including reminders to non-responders [ 15 , 20 , 59 – 61 , 64 , 65 ].…”

Section: Resultsmentioning

confidence: 99%

Dying, death and bereavement: developing a national survey of bereaved relatives

et al. 2023

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Background Assessing and measuring the experience and quality of care provided is central to the improvement of care delivery of all healthcare systems. This paper reports on the development of a survey instrument to capture the experiences of care at end of life from the perspective of bereaved relatives in the Republic of Ireland. Methods A multi-method, multi-stakeholder, sequential approach was adopted for this study. Items for inclusion in the survey instrument bank were identified through (1) a feasibility study and scoping literature review, (2) expert panel programme board review, (3) focus groups and (4) gap analysis. The following steps were undertaken to prioritise the items for inclusion in the final survey instrument: (1) a Delphi study (2) technical expert panel review (3) cognitive interviews with bereaved relatives and an (4) expert panel programme board review. Results Following an iterative process with key stakeholders, a survey instrument was developed with sections focusing on the provision of care at home, in the last nursing home / residential care facility, hospice and hospital, as well as care experience in the last 2 days of life, the relative’s experiences of care and support, the circumstances of care surrounding death and demographic information. In total, a bank of 123 questions were prioritised to be included in the National End of Life Survey instrument. Conclusion The survey will provide a standardised national approach to capturing the experience of care of those who have died, from the perspective of bereaved relatives in the Republic of Ireland. This will allow health service providers, policy makers and regulators to gather important insights into the experiences of care at end of life and will help fulfil the requirement of healthcare services to ensure they are providing high-quality care.

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Section: Resultsmentioning

confidence: 99%

Dying, death and bereavement: developing a national survey of bereaved relatives

et al. 2023

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“…Finally, mail surveys are expensive to conduct. Recently, the Japanese government initiated a nationwide mortality follow-up survey based on death certification, allowing for a more representative survey (Nakazawa et al 2021). The J-HOPE study will be conducted only in PCUs.…”

Section: Accepted Manuscript Introductionmentioning

confidence: 99%

Web-Based Post-Bereavement Survey System in Specialized Palliative Care: A Feasibility Pilot Study

Sasahara,

Sato,

Hashimoto

et al. 2023

Tohoku J. Exp. Med.

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Web-based post-bereavement survey systems for specialized palliative care will enable obtaining timely results on the care quality from more participants at a lower cost. The primary aim of the study was to develop a web-based post-bereavement survey system and to compare response rates for different number of items. The secondary aim was to examine response bias between web-based and mail survey in post-bereavement surveys. Between January and April 2019, two cross-sectional web-based questionnaire surveys were conducted among the bereaved families from six inpatient palliative care units in Japan.Measurements included structure and process of EOL care, overall care satisfaction, achievement of a good death, depression, grief status, web survey usability, and participant and bereaved family member characteristics. The long survey included 34 items, and the short survey included 16 items. There were no significant differences in the response rates between the long and short surveys (24% and 27%, respectively, p=0.376). Compared with a previous nationwide post-bereavement mail survey, more children responded; however, the quality rating scores was unchanged. Despite low response rate, no apparent response bias was observed, indicating its feasibility. This survey method is low-cost, less burdensome to the institution, and allows for ongoing quality assurance.

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Methods to increase response to postal and electronic questionnaires

Edwards,

Roberts,

Clarke

et al. 2023

Cochrane Database of Systematic Reviews

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Background Self‐administered questionnaires are widely used to collect data in epidemiological research, but non‐response reduces the effective sample size and can introduce bias. Finding ways to increase response to postal and electronic questionnaires would improve the quality of epidemiological research. Objectives To identify effective strategies to increase response to postal and electronic questionnaires. Search methods We searched 14 electronic databases up to December 2021 and manually searched the reference lists of relevant trials and reviews. We contacted the authors of all trials or reviews to ask about unpublished trials; where necessary, we also contacted authors to confirm the methods of allocation used and to clarify results presented. Selection criteria Randomised trials of methods to increase response to postal or electronic questionnaires. We assessed the eligibility of each trial using pre‐defined criteria. Data collection and analysis We extracted data on the trial participants, the intervention, the number randomised to intervention and comparison groups and allocation concealment. For each strategy, we estimated pooled odds ratios (OR) and 95% confidence intervals (CI) in a random‐effects model. We assessed evidence for selection bias using Egger's weighted regression method and Begg's rank correlation test and funnel plot. We assessed heterogeneity amongst trial odds ratios using a Chi 2 test and quantified the degree of inconsistency between trial results using the I 2 statistic. Main results Postal We found 670 eligible trials that evaluated over 100 different strategies of increasing response to postal questionnaires. We found substantial heterogeneity amongst trial results in half of the strategies. The odds of response almost doubled when: using monetary incentives (odds ratio (OR) 1.86; 95% confidence interval (CI) 1.73 to 1.99; heterogeneity I 2 = 85%); using a telephone reminder (OR 1.96; 95% CI 1.03 to 3.74); and when clinical outcome questions were placed last (OR 2.05; 95% CI 1.00 to 4.24). The odds of response increased by about half when: using a shorter questionnaire (OR 1.58; 95% CI 1.40 to 1.78); contacting participants before sending questionnaires (OR 1.36; 95% CI 1.23 to 1.51; I 2 = 87%); incentives were given with questionnaires (i.e. unconditional) rather than when given only after participants had returned their questionnaire (i.e. conditional on response) (OR 1.53; 95% CI 1.35 to 1.74); using personalised SMS reminders (OR 1.53; 95% CI 0.97 to 2.42); using a special (recorded) delivery service (OR 1.68; 95% CI 1.36 to 2.08; I 2 = 87%); using electronic reminders (OR 1.60; 95% CI 1.10 to 2.33); using intensive follo...

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A Population-Based Mortality Follow-Back Survey Evaluating Good Death for Cancer and Noncancer Patients: A Randomized Feasibility Study

Cited by 4 publications

References 23 publications

Dying, death and bereavement: developing a national survey of bereaved relatives

Dying, death and bereavement: developing a national survey of bereaved relatives

Web-Based Post-Bereavement Survey System in Specialized Palliative Care: A Feasibility Pilot Study

Methods to increase response to postal and electronic questionnaires

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