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. 2021 Aug 2;36(10):3136–3147. doi: 10.1007/s11606-021-06973-5

Table 1.

Descriptive Table Outlining Study Characteristics and Proportion Willing to Discuss Life Expectancy

Author, country, year Disease type Mean/median age Sample size Proportion wanting to discuss life expectancy Specific question about life expectancy
Patients with cancer
 Arbabi et al, Iran, 201443 Mixed types of cancer 43 years 200 61% [agree] Patients’ life expectancy should be discussed
 Butow et al, Australia, 199645 Breast and melanoma cancer 48 yearsa 144 57% [indicated wanting to discuss] Patient preferences for discussing life expectancy
 Clayton et al, Australia, 200526 Advanced mixed types of cancer 68 years 19 Most [most said it was every important to be informed that their illness would limit their lifespan but not all wanted to be told detailed information about their life expectancy] Should palliative care doctors offer to discuss prognosis with you at certain times?
 Deschepper et al, Belgium, 200831 Advanced mixed types of cancer N/R 17 Minority [a minority of the interviewed patients wanted all the information available about their medical situation and prognosis]

Patient preferences regarding when and how they wanted

to be informed.

 Fujimori et al, Japan, 200744 Mixed types of cancer 62 years 529

15% [strongly prefer]

36% [prefer]

Telling about your life expectancy
 Hagerty et al, Australia, 200411 Advanced metastatic cancer 63 years 126b 81%b [yes] Patients indication on their preferences for prognostic information about the average length of time they would be likely to live
 Hoesseini et al, The Netherlands, 202055 Head and neck cancer 65 years 21

62% [very important]

38% [somewhat important]

To what extent do you think it is important to receive information about your life expectancy?
 Oskay-Özcelik et al, Germany , 201835 Ovarian cancer 58 years 1830

65% [wished for as precise as possible]

22% [wished for an approximate estimation]

Patient information needs concerning life expectancy
 Mackenzie et al, Japan, 201849 Mixed types of cancer 64 years 146c 58%c [wanted to discuss life expectancy] Patient preference for discussing life expectancy with radiation oncologist
 Pardon et al, Belgium, 200920 and   Pardon et al, Belgium 201121d Advanced lung cancer 64 years 128d

65%d [totally agree]

15%d [agree]

9%d [rather agree]

I want to be informed about my life expectancy with the disease
 Saracino et al, United States   of America, 202152 Advanced mixed types of cancer 59 years 206

43% [extremely]

29% [very]

13% [somewhat important]

9% [a little important]

Participants stated importance to know about their cancer prognosis
 Schofield et al, Australia, 200139 Melanoma cancer 58 years 131 61% [yes] Would you want information about how cancer would affect life expectancy?
 Shen et al, United States   of America, 201840 Advanced mixed types of cancer 56 years 221 21% [yes] If the doctor knew, would you want to know how long you have left to live?
 Sherman et al, United States   of America, 201832 Advanced mixed types of cancer 64 years 13 Varied [Patients varied widely in their perceptions. Some expressed a clear interest in detailed prognostic information. Others were more ambivalent] Patients were asked about their preferences on information during prognosis
 Tang et al, Taiwan, 200454 Mixed types of cancer 51 years 364 30% [yes] Would you want information about expected length of survival?
 Uchida et al, Japan, 201938 Mixed types of cancer 63 years 259e 45%e [yes] Would you like information from your doctor about your life expectancy?
 Vehling et al, Germany, 201548 Advanced mixed types of cancer 67 years 55 52% [indicating preference to discuss] Patient preferences for discussing expected survival with a physician
 Walczak et al, Australia, 201510 Advanced mixed types of cancer 63 years 31 19% [clear interest] Patient preferences indicating whether or not they wished to discuss life expectancy during consultations
 Waller et al, Australia, 201924f Mixed types of cancer 65 years 185f,g 66%f,g [yes] Would you want to discuss life expectancy with your doctor?
 Waller et al, Australia, 202125f Mixed types of cancer 65 years 302f 59%f [preferred their doctor tell them their life expectancy as soon as they had the information] Patients were asked about their preferred initiation source
 Wright et al, United states   of America, 201034 Advanced mixed types of cancer N/R 301 73% [yes] If your physician knew how long you had left to live, would you want him or her to tell you?
 Zafar et al, Pakistan, 201650 Mixed types of cancer 49 years 520h 60%h [agreed] I want my physician/nurse or another healthcare provider to discuss with me in detail how long people who have a disease like mine can expect to live. I want to know the average, the best case scenario, and the worst case scenario
Urological and surgical outpatients
 Clarke et al, United Kingdom,   200837 Urological and surgical outpatients 69 years 120 58% [yes] Would you want to know your predicted life expectancy if it were available in clinical practice?
Patients with heart disease
 Deng et al, United States   of America, 201736 Adult congenital heart disease 33 years 152 61% [yes] Want information about life expectancy
 O’Donnell et al, United States   of America, 201851 Advanced heart failure 72 years 50 66% [indicated wish to be informed] Patient preference for being informed of a physician-anticipated life expectancy less than 1 year
 Narayan et al, United States   of America, 201758 Heart failure 57 years 24 71% [acceptors] Patient preferences for receiving survival estimates
 Tobler et al, Switzerland, 201241 Adult congenital heart disease 35 years 200 35% [endorsed wanting to know] Patients endorsed wanting to know when they would die if someone could tell them that
First time nephrology outpatients
 Fine et al, Canada, 200542 Nephrology outpatients 64 years 100

51% [absolute need to know]

46% [would like to know]

Patient preferences for information on actual life expectancy on dialysis
Older patients
 Ahalt et al, United States   of America, 201256 Older adults with late-life disability receiving at home care 78 years 60

65%i [wanted information if their doctor believed they may have less than 5 years to live]

75%i [wanted information if their doctor believed they may have less than 1 year to live]

Would participants want information when given a hypothetical scenario in which their doctor believed they may have less than 5 years/1 year to live?
 Kistler et al, United States   of America, 200622j 70+ years adults living in continuing care retirement communities 82 yearsk 116j

14%j [strongly agree]

52%j [agree]

“I want my main doctor to talk to me about how long I might live”
 Lewis et al, United States   of America, 200623j 70+ years adults living in continuing care retirement communities 82 years 116j 52%j [agree] “To help make cancer screening decisions, I want my doctor to talk with me about how long he/she thinks I might live”
 Mathie et al, United   Kingdom, 201227 Care home residents 88 years 121 Minority [majority of residents said they did not want to, even though some of the care homes were using care home-specific palliative care support tools, including advance care plans] Residents were asked if they would like to talk to the staff about end-of-life
 Schoenborn et al, United   States of America, 201757 Community-dwelling older adults 76 years 40

35% [wanted to discuss life expectancy if it were longer than 1 year]

33% [wanted to discuss life expectancy only toward the end of life]

Older adults were asked whether they want to discuss life expectancy in the range of years with their primary care clinicians
 Schoenborn et al, United   States of America, 201846 Older adults 73 years 878 41% [wanted to discuss] Patients were asked if they were the hypothetical patient, whether they would like to discuss how long they may live with the doctor
Patients with Parkinson’s disease
 Tuck et al, United States   of America, 201530 Parkinson’s disease N/R 267

24% [at the time of the diagnosis]

14% [during the next few visits]

25% [only when the disease worsens]

24% [wait until I ask]

When should your doctor discuss life expectancy?
Inpatients with mixed advanced disease
 Kai et al, Japan, 199347 Mixed terminal disease 68 years 201

45% [candid information desired at all events]

5% [candid information desired if disease is curable]

Patients’ preferences about candid information about diagnosis and prognosis
 Waller et al, Australia, 202053 Mixed advanced disease 81 years 186 23%l [no, but I would like to] Has anyone talked to you about your life expectancy?
Members of the public with no specific diagnosis
 Cardona et al, Australia, 201929 Members of the public N/R 497

24% [yes, but only when I ask]

68% [yes, it is the doctors duty to tell me even if I don’t ask]

If you had advanced chronic illness, would you like to be informed about whether it is likely that you may not live more than a few months?
 De Vleminck et al, Belgium,  201428 Members of the public N/R n=9,651m

77%m [yes, in principle always]

14%m [yes, only if I ask]

Information preference of the studied population if they are faced with a life-limiting illness to know their life expectancy with the disease
 Harding et al, United Kingdom,  201333 Members of the public 51 years 9344

74% [always]

14% [if I ask]

Patient preferences for wanting to know information on time left

aButow 1996 reported the mean age at the time of diagnosis and not at time of enrolment in the study

bHagerty 2004 had varying proportions of patients answering the survey; 95% answered the life expectancy questioncMackenzie 2018 reported the proportion of patients that had not previously discussed life expectancy. This proportion is therefor based on the 127 patients that had not previously discussed life expectancy. A total of 17% had previously had the discussion

dPardon 2009 and Pardon 2011 are based on the same study and reported the same outcome and is therefore only represented once in the table

eUchida 2019 only had 226 patients (87.3%) completing the life expectancy section of the survey

fWaller 2019 and Waller 2021 are based on the same study population but reported different outcomes and is therefore presented twice in the table

gWaller 2019 reported the portion of patients that had not previously participated in discussion of life expectancy. This proportion is therefore based on the 130 patients that in total had not previously discussed life expectancy. Total of 29.7% had previously discussed their life expectancyh

iAhalt 2012 reported two different outcomes regarding preference for discussing life expectancy. Both are presented in the table, but only the 5 years willingness is part of the data analysis jKistler 2006 and Lewis 2006 are based on the same study, but reported different outcome, and is therefore presented twice in the table

kKistler 2006 reported age intervals instead of a mean/median age. The mean/median age from Lewis 2006 was copied since both studies reported on the same study populationlWaller 2020 reported the portion of patients that had not previously discussed life expectancy. This proportion is therefore based on the 154 patients that in total had not previously discussed life expectancy. A total of 9% had previously discussed their life expectancy

mDe Vleminck 2014 had 2,372 patients (24.6%) not answering the life expectancy section

N/R not reported