Serious Illness in Late Life: The Public’s Views and Experiences

Survey Methodology

The Kaiser Family Foundation Serious Illness in Late Life Survey was conducted by telephone May 4 – July 12, 2017, among a representative, random national sample of 2,040 adults age 18 and over, living in the United States, including Alaska and Hawaii (Note: persons without a telephone could not be included in the random selection process). Computer assisted interviews conducted by landline (n=677) and cell phone (n=1,363, including 798 who had no landline telephone) were carried out in English and Spanish by SSRS. The survey was designed and analyzed by public opinion researchers at the Kaiser Family Foundation, and was funded through a grant from the Gordon and Betty Moore Foundation.

In order to better understand how those with serious illness are faring and what challenges they face in accessing and affording care and support services, the full sample includes additional interviews with people who have experience with serious illness, either personally or with a family member (commonly referred to as an “oversample”).

Individuals were classified as being seriously ill if they met each of the following criteria:

1. they were 65 or older,
2. they said they had functional limitations due to a health or memory problem such as difficulty preparing meals, shopping for groceries, taking medications, getting across a room, eating, dressing, bathing, or using the toilet,
3. they said they have been diagnosed with at least one of the following conditions: diabetes or high blood sugar; asthma, lung disease, emphysema, or COPD; heart disease or had a stroke; cancer, not including skin cancer; Alzheimer’s disease, dementia or memory loss; depression, anxiety or other serious mental health problems; or, chronic kidney disease or kidney failure.

Individuals qualified as a family member of someone with serious illness if their loved one currently met the criteria above or if they did so before they died within the past two years. In order to be included, family members also must have said they knew at least something about their family member’s medical care. The exact wording of the screening questions for each qualifying group can be found in the Topline and Methodology.

In total, the survey included 998 interviews with people who met the above definition of having experience with serious illness, including 183 interviews with older adults who are personally seriously ill, 494 with family members of older adults currently living with serious illness, and 321 with family members of older adults who died after a period of serious illness. To ensure there were enough respondents to capture the views and situations of adults who are black or Hispanic who have experience with serious illness, the total sample included 278 blacks with serious illness experience and 282 Hispanics with serious illness experience (in addition to 109 blacks and 119 Hispanics without serious illness experience). Results for all groups have been adjusted to reflect their actual national distribution (See weighting description below).

The SSRS Omnibus survey (detailed below) estimates that less than 20 percent of adults in the U.S. qualify under this survey’s definition of experience with serious illness. To oversample those with experience with serious illness, particularly those who are black or Hispanic, the sample plan consisted of three elements:

1. Cell and Landline Phone Random Digit Dialing (RDD) (n=1,444). The dual frame landline and cellular phone sample was generated by Marketing Systems Group (MSG) using RDD procedures. This included 148 respondents reached by cell phone or landline within Census blocks with an estimated larger share of black or Hispanic people and 34 respondents reached by landline where directory listings indicated one household member at least has a distinctive Hispanic last name. To randomly select a household member for the landline samples, respondents were selected by asking for the youngest or oldest adult male or female currently at home based on a random rotation. If no one of that gender was available, interviewers asked to speak with the youngest or oldest adult of the opposite gender. For the cell phone sample, interviews were conducted with the adult who answered the phone.
2. Pre-screened Respondents Previously Completing Interviews on the SSRS Omnibus Survey (n=288). Weekly, RDD landline and cellular phone surveys of the general public were used to identify respondents who qualified as having experience with serious illness. Individuals who had previously indicated on the SSRS omnibus survey that they fit the eligibility criteria for this group were re-contacted and re-screened for this survey.
3. Respondents Previously Completing Interviews on the SSRS Omnibus Survey (n=308). Individuals who had previously indicated on the SSRS omnibus survey that they were black or Hispanic and were 50 or older were re-contacted, as they were generally more likely to be either personally ill themselves or have a family member who is or was before they died. A small sample of blacks or Hispanics 40-49 years old was also included.

A multi-stage weighting process was applied to ensure an accurate representation of the national adult population. The first stage of weighting involved corrections for sample design, including a correction for the oversampling of telephone exchanges known to have higher incidences of blacks and Hispanics, the likelihood of non-response for the re-contacted samples, and an adjustment to account for the fact that respondents with both a landline and cell phone have a higher probability of selection. The second weighting stage was conducted separately for those with serious illness experience and those without. There are no known administrative data available for creating demographic weighting parameters for those with experience with serious illness as defined by this survey. Therefore, demographic benchmarks were derived by compiling a sample of all respondents interviewed on the SSRS Omnibus survey between March 22, 2017 and May 28, 2017 (N=14,275) and weighting this sample to match the national adult population based on the 2016 U.S. Census Current Population Survey March Supplement parameters for age, gender, education, race/ethnicity, region, phone status, and population density. This sample was then filtered for respondents qualifying for as having experience with serious illness (N=2,479) and those who do not (11,796) and the weighted demographics of these groups were used as post-stratification weighting parameters for each group in the total sample (including age by gender, education, race/ethnicity, region, population density, marital status, phone status, and serious illness status (personally seriously ill, living family member, deceased family member, or no recent experience with serious illness). In the final weighting stage, each group (those with experience with serious illness and all others) was weighted to reflect its actual share in the U.S. adult population. All statistical tests of significance account for the effect of weighting.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Note that sampling error is only one of many potential sources of error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

Group	N	Margin of Sampling Error
Total	2040	±3 percentage points
Age
18-29	261	±7 percentage points
30-49	407	±6 percentage points
50-64	663	±5 percentage points
65 or older	706	±5 percentage points
Race/Ethnicity
White	1140	±3 percentage points
Black	387	±9 percentage points
Hispanic	401	±9 percentage points
Serious Illness
Recent experience with serious illness (NET)	998	±4 percentage points
Personally seriously ill and age 65 or older	183	±11 percentage points
Family members of adults 65 or older with serious illness	815	±5 percentage points

The full poll results are representative of the U.S. adult population, including people of all races. The reported results focus on the total sample, reflective of all adult people in the U.S., as well as people who are white, black, and Hispanic. While the responses for some smaller groups of the U.S. population, for example, Asian-Americans and people of mixed race, are counted in the “total” poll responses, because adults in this poll were sampled randomly, the number of respondents who identify as Asian or as mixed race was too small to report separately, since the margin of sampling error around any poll result would be so large that the result would be unreliable and potentially misleading.

This questionnaire was administered with the exact questions in the exact order as appears in the Topline and Methodology. For the questions about a person’s experience with serious illness, those personally seriously ill or those with living family members with serious illness were asked questions in the present tense. Those family members whose seriously ill loved one is deceased were asked questions in the past tense. In addition, those personally seriously ill were asked directly about their experience, while family members were asked to answer most questions about their loved one’s experience being seriously ill.

Focus Group Methodology

As part of this project, the Kaiser Family Foundation conducted focus groups to learn more about those living with serious illness from their family members, including their experiences with treatment, access to services, and planning for care and support. The groups were conducted in Kansas City, MO on February 28, 2017 and Chattanooga, TN on March 23, 2017. Two two-hour groups were conducted in English in each location for a total of four groups with 9 participants each.

In Kansas City, Q & A Research recruited and hosted the groups. In Chattanooga, Wilkins Research Services recruited and hosted the groups. The screener questionnaire and discussion guides were developed by researchers at the Kaiser Family Foundation. Groups were audio and video recorded with respondents’ permission. This work was paid for by the Gordon and Betty Moore Foundation.

To qualify for the group, individuals must have said they have a family member who:

1. is 65 or older
2. because of a health or memory problem, has difficulty completing basic activities like shopping, preparing meals, taking medication, getting across a room, dressing, bathing, or using the toilet.
3. is receiving medical treatment for at least one of the following conditions: cancer (not including skin cancer), Alzheimer’s disease, dementia, or memory loss, diabetes or high blood sugar, asthma, lung disease, or emphysema, heart disease or stroke, depression, anxiety or other mental health problems, or chronic kidney disease or kidney failure.
4. is currently living through or recently deceased after a period of illness.

In each location, one group was conducted with family members whose loved one was still living and one group was conducted with family members whose loved one is deceased. Each participant was given $100 after participating.