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