Acknowledgments: Tom Marty, Vanessa Sarre, Clare Diane Harris and Jack Koch contributed to the design of the survey, Jack Koch also carried out outreach to patient support groups, and Magdalena Kolczyńska, Jordan Clist and Michael Smith contributed to the analysis of the raw data. We sincerely thank every individual who took the time to respond to the survey and reflect on their own suffering.

• Existing wellbeing metrics, including the DALY and measures of improved life satisfaction such as the WELLBY, do not directly measure suffering – a key determinant of wellbeing – and suffering metrics can address this limitation.
• A pilot survey we conducted with 485 respondents generated retrospective estimates of suffering duration and intensity for a range of conditions and life experiences over one-year periods, as well as momentary wellbeing assessments on 0-10 scales.
• While retrospective estimates almost certainly overstated many durations, they also captured extreme suffering that may have been underrepresented in real-time evaluations.
• Even common conditions, such as tinnitus and loneliness, can cause suffering that is evaluated as extreme, and the results suggest that several other cause areas may deserve greater attention due to the intensity of the suffering.
• As a next step, a [...]

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Outline:

(00:46) Summary

(02:09) The need for suffering metrics

(05:10) Pilot suffering survey

(08:54) Findings

(08:57) Psychological suffering most commonly experienced

(09:35) Conditions most & least frequently selected as major source of suffering among those ever experienced

(11:56) Descriptions

(23:01) Duration estimates at different suffering intensities

(24:52) Insights from a few selected conditions

(24:57) Cluster headache - a deeper analysis

(30:17) Tinnitus

(31:20) Loneliness

(31:49) Kidney stones

(32:19) Akathisia

(32:56) Momentary wellbeing correlations

(35:54) Conclusions and improvements for next, larger-scale iteration

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