Summary of Recommendations from Round 2 Cognitive Testing of the MEPS Cancer SAQ
Introduction
The National Cancer Institute, the Centers for Disease
Control and Prevention, and the American Cancer Society are developing a
self-administered questionnaire, Your Experiences with Cancer,
for current cancer patients and cancer survivors identified
in the Medical Expenditure Panel Survey sponsored by the Agency for Health Care
Research and Quality. The questionnaire will be fielded in English and Spanish
in Spring 2012 (MEPS Panel 16 Round 3 and Panel 15 Round 5).
The Medical Expenditure Panel Survey produces national
estimates of healthcare use and expenditures.
The Cancer SAQ will supplement MEPS data, providing information about the burden
of cancer in the US, long lasting effects of the disease, financial impacts, and
employment outcomes for cancer survivors and their families. Findings from this
research will provide key information needed for the development of
interventions to improve the quality of the cancer survivorship experience, as
well as pivotal information for policy makers in understanding and improving the
burden of cancer.
As part of the development process, Westat conducted
two rounds of cognitive testing to assess how well respondents are able to
understand and answer the questionnaire items. Round 2 cognitive interviews with
20 English-speaking respondents were conducted from August 23 to September 12.
This memo summarizes findings and recommendations from that testing effort. In
October we will also test a Spanish-language version of the questionnaire. Since
the primary goal of the Spanish-language cognitive interviews will be to assess
the translation, our intention is to translate the finalized version of the
English-language questionnaire, based on Round 2 testing results. The October
testing effort will be smaller, consisting of 8 Spanish-language interviews (as
approved by AHRQ and NCI on September 19).
Methods
Recruiting
The July 26 Round 1 memo describes the recruiting
process in detail. For Round 2, we were able to draw on the list of potential
respondents who had contacted us during the Round 1 recruiting effort but who
had not been scheduled for an interview. Unlike in Round 1, almost all the
interviews took place at Westat’s Rockville campus, with the exception of two
interviews (one each in Alexandria and McLean,
Virginia).
Respondent Characteristics
To be eligible, potential respondents had to have a current
or past cancer diagnoses. In addition, participants were screened and selected based
on type of cancer, time since last diagnosis, and employment status. Based on Round 1
results, we excluded those with a childhood cancer diagnosis from this round of testing,
as reflected in the revised screener. Table 1 shows the distribution
of demographic characteristics across Round 2 respondents.
About half the respondents had a current diagnosis and the rest were spread
fairly evenly among categories representing diagnoses in the recent and distant
past.
The Round 2 respondents represented a good mix of education levels. However,
they skewed female, older and White. Finally, although not evident from the
demographic characteristics, we noticed that at least one quarter of these
respondents were savvy about the topic of cancer in general as well as their own
particular medical situations. For example, one respondent does her own research
on cancer survivors, including a study on dragon boat rowers with cancer. This
is likely a result of the recruiting sources used for this effort and may not
accurately reflect the experiences of typical MEPS respondents.
Table 1. Distribution of Round 2 demographic characteristics
| Demographic Characteristic |
Number of
Respondents |
| Gender |
| Female |
12 |
| Male |
8 |
| Race |
| White |
14 |
| Black |
5 |
| Hispanic |
1 |
| Education Level |
| HS or less |
5 |
| Some College |
5 |
| College Degree |
3 |
| Advanced Degree |
7 |
| Age |
| < 40 years old |
3 |
| 40 – 49 years old |
3 |
| 50 – 59 years old |
5 |
| 60 – 69 years old |
4 |
| 70 + years old |
5 |
| Time Since Last Treatment |
| Current Diagnosis (3 w/multiple diagnoses) |
8 |
| 2 years or less |
1 |
| 2 – 6 years (1
w/recurrence) |
6 |
| 6 + years |
5 |
| Employment Status when Diagnosed |
| Employed |
12 |
| Unemployed |
3 |
| Retired |
5 |
Protocol Development
In general, we followed the same protocol development
process as described in the Round 1 memo. The Round 2 protocol, however, focused
primarily on exploring respondent comprehension and ease of answering the items
that were revised based on the Round 1 results. Examples of specific issues for
testing appear below. More detail appears in the final interview protocol,
Attachment C.
- Added more detail in the survey introduction.
- Expanded definition of "currently being treated" and added a new skip
pattern in Section 1.
- Expanded instructions to those with multiple cancer diagnoses at the
beginning of each section.
- Reorganized Sections 2 and 4, including distinguishing between "taking"
and "asking for" leave; revising the duration questions; and adding a
catch-all question at the end of the series on employment changes.
- Changed the focus of Section 6 from medical costs to cancer, its
treatment or the lasting effects of that treatment as the cause of financial
difficulties.
Training
The cognitive interviews were conducted by the same
team of interviewers as in Round 1. All interviewers reviewed the revised SAQ
and interview protocol prior to a more formal 2-hour training session held a few
days before the first Round 2 interview. The training consisted of a detailed
review of the revisions from Round 1 and issues related to those changes that
the interviewers should be aware of as they administered the Round 2 protocol.
Interviewers were also instructed to allow respondents to complete entire
sections or "chunks" of sections (e.g., a series of questions about one type of
employment change in Section 2) before administering the relevant probes. Each
interviewer conducted one to four interviews.
Conducting Cognitive Interviews
Respondents participated in a one-hour in-person
interview either at Westat’s Rockville offices or at a location of their choice
(two respondents chose to do the interview at a neutral location such as a
library). They received $40 for their time as well as a $10 travel allowance.
After introducing the study, its purpose and the cognitive testing procedures,
interviewers asked respondents to sign the informed consent form. The
interviewer then asked respondents to read and react to the cover page, after
which they were instructed to begin filling out the questionnaire. Using the
protocol, interviewers administered a combination of retrospective and
concurrent probes to obtain respondent feedback on how easy or difficult it was
to understand and answer the survey questions. In addition to administering the
scripted concurrent probes, interviewers also noted any unanticipated reactions
or problems with the items and followed up on those issues as needed.
Analysis of the Interview Data
We followed the same analysis steps for the Round 2
data that we did for the Round 1 data, as described in the July 26 memo.
The primary focus of analysis in this round of testing was on the effectiveness
of the revisions we made based on the Round 1 results. Also included in the
analysis were Round 1 issues we included in the Round 2 protocol, such as
respondents’ understanding of "cancer, its treatment and the lasting effects of
that treatment," and effectiveness of the questionnaire for those with multiple
diagnoses or a diagnosis in the distant past.
Findings and Recommendations
The Cancer SAQ attempts to capture a broad range of
experiences from a wide variety of cancer patients and cancer survivors. Across
both rounds of cognitive testing, it appears to meet those objectives fairly
well. In addition, the revisions from Round 1 appear to have worked well. The
issues that arose in this round of testing can for the most part be addressed
with slight wording revisions.
The remainder of this memo presents findings and
recommendations from the Round 2 cognitive interviews. The first section
identifies issues experienced by certain types of respondents and describes some
broad observations. Note that, with the exception of the duration questions, we
do not include recommendations in the broad observations section; they are
addressed in the detailed recommendations. The next and final section of the
memo is organized by survey section and item. It provides detailed findings and
recommendations to address problems that surfaced during testing.
Broad Observations: Issues Experienced by Selected
Respondent Types
The Cancer SAQ is targeted to respondents who are
currently undergoing treatment and those whose treatment occurred at any time in
the past. It is intended for those who have had one cancer occurrence as well as
those with multiple cancer diagnoses. Those with one cancer occurrence,
either current or in the recent past had the least trouble navigating through
the survey. The remainder of this section describes issues experienced by those
with multiple diagnoses and those whose last occurrence was in the distant past.
Multiple Cancer Diagnoses
In Round 1,
we found that answering the questionnaire for respondents with multiple
diagnoses was not a straightforward process, nor did the survey items always do
a good job of accurately capturing their diverse experiences. To address this
problem we added a set of instructions at the beginning of each section,
starting with Section 2, that read:
If you have had more than one type of cancer please
think about your experiences across all of them. If that is not possible, please
focus on the most severe, and if they were equally severe, please focus on the
most recent.
Four of the twenty respondents in Round 2 reported
either a recurrence (1) or multiple cancer diagnoses (3). These respondents
seemed to include either all of their cancer episodes when answering the items
throughout the survey or, when that was not possible, focused on the most severe
or more recent. For example, one respondent who had skin cancer and bladder
cancer only considered his most severe cancer (bladder). One respondent,
who had three types of cancer over the past six years,
struggled with the terms "type" and "severe."
He wondered whether he should think of pain or inconvenience when deciding on
severity, and whether to focus on bodily location or form of cancer when
deciding on type. However, he kept all three in mind when answering the survey
questions.
Cancer Diagnoses in the Distant Past
Although we did not make any revisions to specifically
address recall issues for those with diagnoses in the distant past, we continued
to test the issue in Round 2. Four out of the five respondents recruited in the
"6 years +" category received their last treatment eighteen or more years ago.
For the most part, respondents had little or no trouble with recall throughout
the survey. For the respondents who did mention having trouble remembering, the
issues were minimal and occurred in the health insurance and medical care
sections.
Some examples are described below:
- One respondent, whose treatment was 9 years ago, struggled to remember
information in order to answer several of the medical care questions. At the
Q79 series that asks about discussions with her doctor, the respondent
appeared to have trouble recalling several of the events. She attributed not
remembering the discussions to mean they did not occur and marked, "did not
discuss at all" rather than "I don’t remember" for Q79c and Q79d. Although
this respondent may have accurately portrayed her situation, it is important
to note that this was also an issue in the first round of testing. A similar
pattern in the survey population would end up inflating the proportion of
"did not discuss" answers and thereby bias the survey estimates.
- Two other respondents noted difficulty "thinking back" to what their
doctors discussed with them at the Q79 series.
- One respondent had difficulty with recall in the insurance section at
Q70, saying "I have to think back 20 years" in reference to getting a second
opinion about her breast cancer.
Broad Observations: Survey-wide Issues of Note
"Lasting Effects"
We continued to test respondents’ interpretations of
"lasting effects" in Round 2. Similar to Round 1, respondents’ interpretations
varied, but for the most part they seemed to consistently apply their own
interpretations across questionnaire items. Many respondents considered both
mental and physical effects of the cancer and its treatment. Below are examples
of what respondents did and did not consider "lasting effects."
- One respondent described lasting effects as "psychological, emotional,
level of pain, inconvenience – those types of things."
- A respondent described her lymphedema related to her cancer as a
"lasting effect."
- One respondent, who recently was out of surgery, felt that the effects
of her cancer and its treatment were still very strong, and gave examples
such as continuing financial troubles, fatigue, and limitations to everyday
activities such as taking care of her children.
- One respondent described "lasting effects" as "life changes" and
"changes to your physical and mental well-being."
- Two respondents were including the positive effects of their cancer as
"lasting effects." One was specifically thinking about how her cancer has
not come back. Both did still include some negative effects such as hair
loss from chemotherapy or "any change in your environment or in your way of
living."
- Some respondents did not differentiate between "lasting effects" of
cancer and its treatment, and "side effects" of treatment, such as "chemo
brain."
- Two of the five respondents who were currently in treatment for their
first cancer diagnosis initially struggled with this concept. However, after
spending some time thinking about what "lasting effects" included, both
seemed to interpret the phrase as intended. For example, one of the
respondents said, "the time period would be the rest of your life, the
physical side effects would not be lasting, it’s more of a mental thing."
Of key analytic interest are the "lasting effects" of
cancer treatment on the various aspects of respondents’ lives. It is therefore
important that respondents consistently include "lasting effects" in their
answers throughout the survey. For the most part, it appeared that when they did
think about lasting effects, they were doing so throughout the entire survey.
Duration Questions
The Round 2 duration questions differed from the Round
1 version in two significant ways: 1) response options were closed-ended and
consisted of time period ranges, and 2) a follow-up item asked whether the
employment change is ongoing. Overall, the revisions seemed to work well for
respondents, with a few exceptions. Two respondents struggled with recall.
- One respondent said that because his treatment was so long ago and he
"didn’t really take the time to add it up" it was difficult to calculate the
duration of his extended paid time off.
- One respondent who had taken unpaid time off from work until she was
able to get disability leave had difficulty remembering when the unpaid
leave ended and the disability started.
Another had trouble mapping her situation to the
question. She is not currently working and is preparing for her treatment to
begin soon. She calculated "how much it would be all together" in order to
answer, projecting into the future how long she would be on unpaid leave
throughout all of her radiation treatments rather than how long she has been out
of work so far.
Three of the ten respondents who completed the
employment section had difficulty with the question "Is this change ongoing?" at
Q16 and at Q20. We noticed (and at least one respondent pointed out) that the
wording for Q16 and Q20 is not consistent with the wording in Q13 and Q17.
Rather than asking about making a change, Q13 and Q17 ask respondents about
"taking" extended paid time off or unpaid leave. This is different from the
other items in the employment section that ask specifically about a change (Q21,
Q25, and Q33).
Recommendations
Given the broad range of experiences the questionnaire
is intended to capture, it is impossible to predict every situation respondents
will be attempting to describe when answering. As well, some recall difficulty
must be expected from respondents who are reporting on experiences from the
distant past. The workgroup should be aware of these issues and the potential
error they introduce into the survey results.
Change the wording in Q16 and Q20 to be consistent
with what is asked in Q13 and Q17 as indicated below:
Q16 – Is your extended paid time off from work
ongoing?
Q20 – Is your unpaid leave ongoing?
Skip Patterns
We noticed a reduction in skip pattern errors between
Round 1 and Round 2, both in the number of errors and in the proportion of
respondents who committed them (79 percent of respondents in Round 1 versus 60
percent of respondents in Round 2). Of the 22 skip errors committed in Round 2,
6 happened in Section 1 before we moved the "is this the first time you have
been treated" question to the end of that section (see detailed description
below in the discussion of Section 1). After that revision, only 2 skip errors
were committed in that section (and only one of those was related to the moved
item).
However, questionnaire navigation continues to be a challenge for some
respondents. Items that gave respondents the most trouble were Q4 and Q10.
Specific issues with skips are discussed further in the relevant sections below.
Section- and Item-Specific Findings and
Recommendations
Respondents, in general, appeared to have positive
impressions of the questionnaire. Below are examples of their overall reactions
after completing it.
- One respondent stated that "I enjoyed [taking the survey]; it made me
think about some things that I have been through."
- Two respondents commented that they liked the big print on the survey;
one noted that it facilitated her reading of the questions.
- Two respondents felt that the survey was "very detailed"; one said the
questionnaire was "very comprehensive" while another noted that it was "well
defined on what questions it is going to ask."
- One respondent commented that the survey was "very thorough" and that
"most of the questions were understandable."
- Some respondents thought the survey was "a great idea and a great
exercise." One said that the survey captured "the kind of information that
needs to be collected and shared, just to make people’s lives easier."
Another thought the survey would help others in the future. A third
respondent felt the topic was "very important and has been overlooked for
years…the cancer experience doesn’t end with treatment."
Some respondents had suggestions on how to improve the
survey. One was concerned that the survey was too long and thought it should
have a stipend to entice people to complete it. A second respondent felt that
the details elicited by the cognitive interview were important to "really
understand" his experiences with cancer and that a way to capture those details
should be built into the questionnaire.
A few respondents expressed some concerns about the
survey. For example, one respondent worried that the survey did not adequately
capture the different experiences of those who are working versus those who are
retired. At least two respondents who were in the middle of treatment or who had
been diagnosed but not yet received treatment reported that they found it hard
to answer "questions about the recovery period [Section 8]."
Cover Page
Round 1 respondents did not feel that the cover page
was informative about the survey comments. A second sentence was added to the
introductory paragraph on the cover page, detailing what the survey questions
ask about. During this round of testing, respondents appeared to have a better
understanding of what the survey was about compared to the previous round of
respondents. Most respondents thought it would ask about the "effects of
cancer." For example,
one said it would ask about "more social aspects of life,
not necessarily health," while another commented that the survey was "not so
much about what happened, but the effects of it after." Others thought that the
survey would encompass a "whole picture about cancer,"
focusing on how cancer affected all aspects of their lives.
Three respondents assumed from the description on the
cover that the questionnaire would focus on expenditures related to their cancer
treatment.
- One respondent commented, "the expenditure word takes me to
monetary…they’re evaluating some expenditure, monetary-related issue."
- One focused on the title and said, "So I’m guessing it would be about
[pause] billing? The costs? I get the definite impression that it’s about
money, more than anything else."
- Another respondent, who was diagnosed 9 years ago, thought the survey
was about expenditures and worried that it would be difficult for her to
remember all of her costs.
Recommendations
Leave the cover page as is.
Section 1 – Cancer History
Based on Round 1 results, we reformatted Q4 (Q8 in
Attachment A) in Section 1 to alleviate some of the trouble those respondents
were having with the skip instructions. However, five of the six Round 2
respondents who received that question overlooked or misunderstood the
instructions. As one said, "I wasn’t sure if I should stop here and go to
Section 2, or just complete the rest." After 13 interviews, we moved Q4 (now Q8)
to the end of Section 1. Post-revision, only one of seven respondents misread
the new skip instruction.
Q3 – Are you currently being treated for
cancer – that is are you planning or recovering from cancer surgery, or
receiving chemotherapy, radiation therapy, or hormonal therapy for your cancer?
Based on Round 1 results, the workgroup inserted a
definition of "currently being treated."Most
Round 2 respondents who answered "no" at Q3 seemed to be interpreting "currently
being treated" as intended, as did some respondents who answered "yes." For
example, one described his once-a-week chemotherapy and radiation treatments
when explaining his answer.
Another said she was thinking about recovering from her surgery and getting
ready to start radiation, commenting that the definition helped her to decide if
she was "currently being treated."
Note that respondents with breast cancer who are
taking Tamoxifin for several years or even indefinitely had varying
interpretations of this question. Some answered "yes" at Q3,
specifically stating they did so because hormonal therapy was included in the
definition. Others answered "no," considering completion of chemotherapy or
radiation to be the end of their treatment. For example, one respondent who is
taking Tamoxifin and answered "no" did so on the premise that "treatment" means
"you actually have to go somewhere to receive it." Another issue for some of
these women was a reluctance to skip past Q5-Q7, which they felt applied to
their more "traditional" treatments of chemotherapy or radiation.
A few respondents also had difficulty with the phrase
"planning or recovering from cancer surgery." One noted that her cancer had been
"taken care of" and answered "no,"
but hesitated because she is going through reconstructive surgery and was unsure
if that should be included in "recovering from surgery." Another respondent
answered "yes" because she is still "recovering from radiation therapy,"
although she has finished her last radiation treatment.
Recommendations
The workgroup may want to consider further
clarification of "hormonal therapy," although additional text will add to item
complexity (and, hence, burden). Otherwise, leave the question as is.
Q4/Q8 – Is this the first time you have been
treated for any type of cancer?
Six respondents who answered "yes" at Q3, continued to
answer questions in Section 1 instead of skipping to Section 2 after answering
Q4 (or instead of skipping directly to Q8). (Attachment D shows Section 1 before
Q4 was moved to Q8.) Most simply did not see the skip instruction. Others saw it,
but in glancing ahead at the rest of the section felt the questions applied to
them and wanted to answer anyway. Some respondents who missed the skip
instruction at Q4 did not have trouble answering the items for Q5 – Q7. This was
usually because they were thinking about their hormonal therapy or surgery at
Q3, and their radiation or chemotherapy at Q5 – Q7.
Two respondents who had multiple cancer diagnoses had
difficulty with Q4.
- One respondent is currently in treatment and has previously had two
other, different, kinds of cancer. He decided that because it is the first
time he is being treated for his new cancer, he should answer "yes" at Q4.
- One respondent who has bladder cancer and previously had skin cancer
paused at Q4. Because he did not consider his skin cancer to be very serious
he was unclear if the surgery to remove the cancer should be considered a
previous treatment. He ultimately decided to answer "no" saying, "sometimes
I don’t even consider it cancer, but it is."
Recommendations
Leave as is, with Q4 (now Q8) appearing at the end of the section.
Q5/Q6 – About how long ago did you receive your last cancer treatment?
Only eight of fourteen respondents arrived at Q5 by
following the skip instructions as intended. All of these respondents were
thinking of their "primary course of treatment" when answering, mentioning when
their last chemotherapy, radiation treatment, or surgery occurred. These
respondents noted that they were not including follow-up visits, or hormonal
therapy as "treatment." However, one respondent answered Q5 for when she
finished her last treatment with Tamoxifin (hormone therapy), rather than for
the surgery she had to remove the cancer before the Tamoxifin.
Both "treatments" were finished.
Recommendations
Leave the question as is.
Q8/Q7– What was the most recent year a doctor or
health professional told you that your cancer had come back?
Only one respondent received this question. He did not
appear to have any trouble answering this question with "year."
Recommendation
Leave the question as is.
Section 2 – Changes to Your Work Schedule
For the most part, respondents seemed to be tying
their answers in Section 2 to their cancer, treatment and lasting effects of
that treatment. A few did not, instead including time off they took for a trip
or a job change due to the economy. Of note, one respondent had difficulty
deciding how to answer Q14 (when did you take extended paid time off from work)
using the existing response options. She considered her surgery itself to be the
treatment and as such, did not feel it was long enough to warrant the "during
treatment" category. On the other hand, given that she took her extended time
off immediately following the surgery, the next answer choice, "less than one
year after treatment was finished," seemed too broad for her situation. She
ultimately selected both "during treatment" and "1 year after treatment" as her
answer.
We did not encounter any other respondents who reported confusion with these
answer categories. In fact, the one other respondent whose only treatment was
surgery had no trouble selecting "during treatment" as the start time for her
time off.
Q9 – At any time from when you were first diagnosed
with cancer until now, were you working for pay at a job or business?
Eleven of the twenty respondents said "yes" at Q9 and
all seemed to be interpreting the question as intended. One respondent, who has
multiple diagnoses, initially answered "no" at Q9, thinking about his work
status since his latest diagnosis. When probed by the interviewer, he remembered
going back to work after his first diagnosis (and before his recurrence) and
therefore decided to change his answer to "yes." The remaining seven respondents,
who answered "no" at Q9,
seemed to have interpreted the question as intended.
- Five of the respondents were currently retired.
- One respondent was not employed.
- One respondent took a leave of absence to take care of his mother before
being diagnosed with cancer. He has been out on disability since then.
Recommendations
Leave the question as is.
Q10 – At any time since your first cancer
diagnosis, did you take extended sick leave, leave without pay, or a change in
your hours, duties, or employment status?
Q11 – At any time since your first cancer
diagnosis did you ask for extended sick leave, leave without pay, or a
change in your hours, duties, or employment status?
After Round 1 we added Q10 as a means of capturing
respondents who may have asked for an employment change but did not actually
take it (implying it was denied to them).
Ten of the twelve respondents who received Q10 or Q11 answered "yes" to having
taken an employment change. However, four respondents did not follow the skip
instructions as intended. Instead, three of them proceeded to answer Q11, Q12a,
and Q12b, rather than just Q12b. One other respondent answered "no" at Q11,
where he again missed the skip instruction and went on to answer Q12b. At that
point, however, he realized the item did not make sense, and after discussing
with the interviewer, skipped to Q37. One respondent was unsure of the
difference between "take" and "ask" in Q10 and Q11. He said he found the
questions confusing and had to read them twice. His interpretation was "Take is
you did it regardless of what they said. Ask is if you didn’t get permission,
you may not have taken it…I think it’s the same thing."
Additionally, a few respondents had difficulty with
the phrase "extended sick leave" in Q10 and Q11.
- One respondent who answered "no" at both items thought that "extended
sick leave" referred only to taking off from work because you can no longer
do your job, "either through pain or maybe losing a limb." Even though she
had noted earlier that she took two weeks of sick leave after her surgery,
she did not consider this to be "extended sick leave." The time she took off
after her surgery was not captured at Q37.
- Another respondent initially said she was "not sure" what "extended sick
leave" meant in Q10. However, she ultimately interpreted the phrase as,
"taking more sick leave than you’d normally do" and answered "yes" at Q10
thinking about taking "more than the occasional day off here and there" for
her cancer.
Recommendations
Consider revising Q10 (take) and Q11 (ask) to match
the wording used for extended time off in Q14 and Q17. Note this would lengthen
an already long and complex item.
"At any time since your first cancer diagnosis, did
you {take/ask for} extended paid time off from work, {take/ask for} unpaid time off,
or did you make a change in your hours, duties or employment status?"
Note: The following results and recommendations are
based on the ten respondents who completed the remainder of the employment
section and one respondent who completed the caregiver section (where applicable).
Q12a – Did you ask for these work changes…?
Q12b – Did you make these work changes…?
Most respondents interpreted Q12a and Q12b as
intended. The respondents who did not follow the skip patterns properly
expressed confusion, most likely because they arrived at questions that were not
intended for them. Additionally, one respondent was unsure how to answer Q12a
because she had multiple employment changes with different causes -- she had
taken extended sick leave for her radiation and chemotherapy, but was also laid
off from her job for reasons not related to her cancer. She decided to choose
"for some other reason" at Q12a and skipped to Q37, but did not report her
extended sick leave there.
Recommendations
Leave the questions as they are.
Q13 – Did you ever take extended paid time off
from work (vacation and/or sick time)? By extended time off, we mean more than
an occasional day off here and there.
Q52 – Did any of your caregivers take extended
paid time off from work (vacation and/or sick time)?
Most respondents seemed to interpret "extended paid
time off from work" as intended. For example, one respondent marked "yes"
because she was thinking about two weeks she took off after her surgery. Another
respondent answered "yes" saying she took off "more than the occasional day here
and there." Respondents were also including disability leave at Q13 as intended.
A few respondents, however, did have difficulty with the meaning of the
question.
- One misinterpreted the phrase and thought it asked her if the time she
took off was given, or "extended" to her, rather than asking if she took
leave that lasted over a period of time.
- Two respondents were unclear what time frame they should think about at
Q13.One respondent asked if the question was "only related to treatment."
Another respondent was unsure if it was asking about "immediately after my
surgery" or any time after her diagnosis. This respondent included time she
took off for her honeymoon in addition to time she took off during her
surgery.
Several respondents seemed to be answering "yes" to
this question thinking it was a catch-all employment change question. Some were
answering for multiple employment changes, including extended paid time off;
others were answering for other kinds of changes altogether, such as reducing
the number of hours worked or switching to a different job. In most cases the
additional changes were reported elsewhere, but the duration estimate at the
initial question was inflated.
Recommendations
Leave the question as is.
Q21 – Did you ever change from working part-time
to working full-time?
Three respondents had difficulty with this item. One
thought it "made the presumption that she has worked part-time." Another thought
Q21 was "backwards" (meaning, Q25, which asks about switching from full-time to
part-time is in the correct order) and does not apply to a situation involving
cancer treatment.
Recommendations
Leave the question as is.
Note: The following results and recommendations are
based on the responses from the twelve respondents who completed the remainder
of the employment section and the five respondents who completed the remainder
of the caregiver section.
Q37 – Did you make any other type of work arrangements
because of your cancer, its treatment, or the lasting effects of that treatment?
Q64 – Did any of your caregivers make any other
type of work arrangements because of your cancer, its treatment, or the lasting
effects of that treatment?
This item was added to capture employment changes
respondents (or their caregivers) may have made but that were not listed in the
preceding series of employment change items. For the most part, the item seemed
to be capturing additional employment changes that were not asked about
previously or were left out because of errors respondents made following the
skip patterns.
- Two respondents reported a change in their work shift. One switched from
night to day while the other started working earlier in the morning to avoid
rush hour when driving to his treatment appointments.
- One respondent mentioned a nerve problem she had developed as a result
of her radiation and that caused her to be unable to complete a chapter in a
book she was writing (the respondent was self-employed).
- One respondent who was a full time student with an assistantship at a
university noted that she dropped from taking 3 courses to 2 courses a
semester.
- One respondent who misread the skip instruction at Q10, and therefore
did not report any employment changes in the remainder of the section,
reported his disability leave at Q37.
Work arrangements made by caregivers that were not
captured in the previous part of the section (because they were not at least 2
months long) were captured at Q64.
- One respondent reported that her caregiver took off a few days to drive
her to surgery and treatments.
- One respondent reported that her friends "rescheduled their shifts" so
that they could come with her to her appointments.
One respondent reported working from home, which was
already captured at Q31. Another respondent noted being laid off from her job,
which was not related to her cancer. And finally, one respondent had difficulty
with the skip instruction at Q37 because "there was no instruction" if she
answered "yes." The respondent decided to skip to the next section.
Recommendations
Leave the questions as they are. Duplicate information
reported at Q37 can be deleted with data cleaning procedures.
Q39 – Because of your cancer, its treatment, or
the lasting effects of that treatment, did you retire earlier than you had planned?
Q66 – Because of your cancer, its treatment, or
the lasting effects of that treatment, did any of your caregivers retire early?
Q40 – Because of your cancer, its treatment, or
the lasting effects of that treatment, did you delay retirement beyond when you
had planned?
Q67 – Because of your cancer, its treatment, or
the lasting effects of that treatment, did any of your caregivers delay
retirement?
The retirement questions were reworded to help
respondent focus on that issue as it relates to their cancer, which they were
not doing consistently in Round 1. Round 2 respondents seemed to be interpreting
these items as intended. Several younger respondents answered "no" for both
items because they were not yet thinking about their retirement. One respondent
who had already retired answered "no" for both items because her retirement was
not cancer-related. Another respondent who answered "yes" at Q39 did so because
he had anticipated leaving his company after being eligible for full retirement
benefits but was forced to retire earlier than that after his doctor told him he
could not work anymore.
A few respondents, who were currently undergoing
treatment were unsure of their retirement decisions and so hypothesized about
what they might do in the future so that they could answer these questions.
- One respondent who had to dip into her savings to pay for cancer-related
expenses said that she was "fairly sure" that she will not be able to retire
as early as she had previously intended, but given her age the retirement
decision is most likely at least 30 years away. She answered "no" at Q39 and
"yes" at Q40.
- Another respondent who was currently unemployed had originally planned
on retiring in about a year. Now that she has cancer, she is unclear if she
will need to return to work. She concluded that her retirement decision
would depend on what her final out-of-pocket expenses turn out to be. If she
has enough money after her treatments are finished, she thinks she might
retire on time. If not, she might delay retirement. Ultimately she answered
"no" for Q39 and "yes" for Q40.
- A third respondent who answered "yes" to Q39 reported that she had left
her job but thought of this "as a hiatus" rather than retirement. She was
unsure if she would go back to work in the future, but knew she would not go
back to the same job.
Recommendations
Leave the questions as they are.
Section 3: Other Aspects of Work
All thirteen employed respondents answered the section
about other aspects of work (Q41 – Q47). Nineteen respondents answered Q48,
regardless of their employment status. One respondent misread the instructions
at Q9 and skipped Q48, going instead to Q49.
Q45 – Did you ever stay at a job in part because
you were concerned about losing your health insurance?
Q46 – Were you concerned about losing your health
insurance because of your cancer?
We added Q46 for Round 2 because Round 1 respondents
did not consistently tie Q45 to their cancer. Round 2 respondents for the most
part seemed to be interpreting this question as intended.
- One respondent noted that she felt a lot of pressure to maintain her
full-time status at work because she is the primary holder of insurance for
her family, which includes a child with health issues. She is worried that
if there was a break in her insurance due to a change in her employment
status, or if she had to leave her job because of her cancer, that she might
not be picked up again by the same or another insurance company. She
answered "yes" to both Q45 and Q46.
- Another respondent, a fully funded PhD student, said that she did not
want to leave the university program while her cancer treatment was in
progress even though she would have preferred to finish her degree later.
She stayed because she was afraid she would not be able to get health
insurance elsewhere. She answered "yes" to both Q45 and Q46.
- One respondent noted he was worried about having to leave his job
because of losing health insurance in general, not specifically because of
his cancer. He answered "yes" at Q45 and "no" at Q46.
- A respondent who may have inadvertently answered "yes" at Q45
nevertheless appropriately marked "no" at Q46, explaining that she was not
concerned about losing her health insurance because of her cancer since she
is covered by her husband’s health insurance.
Seven respondents answered "no" at Q45 and skipped Q46
correctly. However, two respondents who answered "no" at Q45 missed the skip
instruction and answered Q46. Both answered "no" at Q46.
Recommendations
Leave the question as is.
Q48 – Did your spouse or significant other ever
stay at a job in part because he/she was concerned about losing health insurance
for the family?
Round 1 respondents had difficulty answering this item
because there are multiple assumptions about insurance, marital, and employment
status embedded in it. For Round 2, we collapsed the tailored response
categories into one "does not apply" response option. For the most part,
respondents seemed to be interpreting Q48 as intended.
- One respondent answered "yes" because her husband needed to stay at his
job and maintain his health insurance in case she lost hers due to a change
in her employment status at her workplace.
- Another respondent marked "no" because she is the main carrier for
insurance for the household, not her husband.
- Four respondents marked "does not apply" because they did not have a
spouse or significant other at the time.
However, the change did not completely solve the
problem of respondents using the "no" category to respond to any one part or all
of the question’s assumptions. One-quarter of Round 2 respondents answered "no"
when "does not apply" may have been more appropriate for their situation.
- Three respondents who were not married at the time of their treatment
answered "no."
- Another respondent answered "no" even though his wife was retired at the
time of his diagnosis.
- One respondent marked "no" because her husband is self-insured and
therefore his insurance is not tied to his job.
- One respondent who answered "no" reported that his wife had passed away
before his diagnosis. He did not choose "does not apply" because, in his
mind, that option is for those who do not have health insurance.
- Additionally, three of these respondents were not carried on their
spouse’s insurance, but had their own.
Recommendations
The best way to address the problem of too many "does
not apply" situations ending up in the "no" answer category would be to ask one
question for each of the embedded assumptions (e.g., "Do you have a
spouse/significant other?"; "Does your spouse/significant other have a job?";
"Does your spouse/significant other have health insurance through that job?";
"Are you carried on your spouse/significant other’s health insurance?").
However, this would add length to the survey as well as diverge from the main
topic. Another alternative, to anticipate and account for all "does not apply"
situations in a list of tailored response options, is equally undesirable. If
the workgroup can accept that not all "no" answers will strictly mean that the
respondent’s employed spouse/significant stayed in a job because of health
insurance worries, then leave the question as is.
Section 4 – Caregivers
Q49 – Since the time you were first diagnosed with
cancer, has any friend or family member provided care to you during or after
your cancer treatment?
Fifteen respondents reported having a caregiver. As in
the first round of testing, Round 2 respondents included friends, neighbors,
church members, significant others/spouses, and relatives (brothers, sisters,
mother, father) as caregivers. They did not appear to be thinking about medical
professionals when answering Q49.
When asked to describe the type of caregiving
provided, most respondents mentioned ensuring they had food, taking care of
their children, helping out around the house, driving them to and from
appointments, accompanying them to appointments and treatments, providing moral
or emotional support, and helping the respondent get around. However, several
respondents had trouble defining caregiving.
- One respondent commented, "That is a tough question…are you talking
about clinical care, or moral support?"The respondent answered "no" because
he thought of a caregiver as "somebody who took care of you because you
couldn’t take care of yourself" and he felt he was able to take care of
himself. When probed further he mentioned that sometimes people drove him to
the hospital but he knew that no one "really had to take time off to help
him." A similar respondent only mentioned having someone drive him to and
from the hospital, and he considered this "minimal care giving." Both
answered "no" at Q49.
- One respondent asked, "What does care mean…I’m not sure about care. I
didn’t really need any care except for the first couple of weeks I wasn’t
allowed to drive, so I had someone drive me." Different from the two
respondents noted above, this respondent ultimately decided that driving was
a form of care and answered "yes" at Q49.
- One respondent asked, "Should I say no? Caregivers do many different
things…no one provided physical caregiving services to me." She compared the
care she received to the kind of care she gave her father when he was ill
(feeding him, cooking for him, talking to the doctor, taking him to
treatments) and decided her answer was "no" at Q49 because she did not
receive any help like that.
- Two respondents mentioned that the only care they received was when
family members wanted to be with them at doctor appointments. In both cases,
respondents believed that the family members wanted to be there for "peace
of mind" but that the respondent did not actually "need" their help. One
respondent answered "no" at Q49 while the other answered "yes."
- A final respondent was confused by the word "care." He asked, "Does it
mean health care, support, taking to an appointment, helping understand,
helping decide?" He said he thought the meaning of care was "vague" based on
the definition provided. Additionally, he noted that the only help he
received was when his wife came to appointments with him to help understand
what the doctors said. He ultimately answered "no" at Q49 because he felt
care was "more or less the lines of physical help because the person is
debilitated or weak."
Recommendations
Leave the question as is.
In addition to changes already described in the
discussion of Section 2 above, we added Q51 in Section 4 to filter out
respondents whose caregivers did not make an employment change for at least two
months. Ten respondents in Round 2 reported that their caregivers did not make
an employment change. Five respondents reported that their caregivers did make
employment changes, four of whom reported that the employment change was for
less than 2 months. Therefore, only one respondent answered all of Section 4;
the other four respondents only answered Q64 –Q67.
Q50 – Because of your cancer, its treatment or the
lasting effects of that treatment, did any of your caregivers ever take extended
sick leave, leave without pay, or change their hours,
duties, or employment status?
Five respondents reported that their caregiver
experienced an employment change, but only one reported that the employment
change was for at least two months (Q51).
Some of these respondents reported their employment change at Q64.
- One respondent was answering for the times her brother took off from
work to go to the oncologist with her.
- Another respondent described her co-workers changing their shifts in
order to take her to appointments.
- One respondent answered "yes" because his children made arrangements
with their work to attend his doctor’s appointments. He noted that he was
unclear what the changes were, but later at Q64, noted that he knew it was
just a "temporary" change.
Two respondents who had trouble with several skip
instructions incorrectly skipped at Q50, proceeding to Q51 instead of Q64.
Recommendations
Leave the question as is.
Section 5 – Experiences with Health Insurance
Q68 – At any time from when you were first
diagnosed with cancer to now, were you covered by health insurance that paid for
all or part of your medical care, tests or cancer treatment?
Most respondents had little trouble understanding or
answering the health insurance questions. All but one respondent answered "yes"
to Q68. They described a variety of health insurance situations (such as through
work, a spouse/significant other, supplemental or private insurance, or a
government-funded program such as Medicaid). Some respondents thought of
multiple insurance policies while answering the items in this section (such as
Medicare and a supplemental insurance). However, one respondent, covered by NCI
as part of a research project, was initially denied health insurance after he
left the research project. Twenty years later he now has health insurance
coverage. He answered "yes" at Q68 as intended, but when answering the items in
the series, he was only able to think about his coverage through NCI related to
his cancer, and not his coverage through his current insurance company. The
concept of health insurance was only complicated for one respondent, who had
difficulty classifying her husband’s military health care coverage. She answered
"no" at Q68 because she did not consider the coverage to be traditional health
insurance, but continued answering the rest of the items, rather than skipping
to the next section, because she felt that they applied to her situation.
Recommendations
Leave the question as is.
Q69 through Q72 – Was there ever a time when
health insurance refused to cover…?
For Round 2, we included a "does not apply" option at
these items to help alleviate ambiguity in respondents’ "no" answers. However,
some respondents still answered "no" when what they meant was that they had
never sought the benefit in the first place. For example, one respondent who
answered "no" at Q71 explained that he had never gone to a facility that was not
covered. Another respondent answered "no" at Q72, but stated that she had never
applied for health insurance, and therefore was never denied insurance. A
majority of the respondents, however, did seem to use the answer categories as
intended.
- Some respondents answered "does not apply" at Q70, stating that they
never sought a second opinion.
- Multiple respondents answered "does not apply" at Q72, stating that they
never applied for health insurance, usually because they already had
coverage.
- One respondent answered "no" at Q70 because he never asked his insurance
company to cover the second opinion he received.
At Q69 and Q71, a few respondents found it difficult
to separate out the facility from the doctor. For example, two respondents noted
that they had received a test that was not covered by insurance because it was
done at a different facility with a different doctor. One answered that she was
denied coverage for both, while the other chose to say she was only denied
coverage for the facility. And finally, as in Round 1, some respondents who
answered "yes" at one of these items actually ended up receiving the benefit
denied them by the health insurance company because they decided to pay for it
out of pocket or they found another way to get coverage.
Recommendations
Consider combining Q69 and Q71 into one questions to ask:
Was there ever a time when health insurance refused to
cover a visit to the doctor or facility of your choice?
Move Q70 to before Q72 and change the last response
option to read:
I never asked for a second opinion.
Section 6 – Finances
Because Round 1 respondents tended to exclude from
their Section 6 answers any financial difficulties that arose indirectly from
their cancer experiences, we expanded the questions from asking about medical
costs to asking about the financial impact of the cancer, its treatment and the
lasting effects of that treatment. These changes seem to be capturing a broader
range of financial difficulties, as intended. Twelve respondents said "no" at
Q68 and eight said "yes." Some respondents tied their financial difficulties
directly to their cancer, its treatment or the lasting effects of that
treatment. For example, one respondent said "yes" at Q73 because she had to go
into debt to pay her portion of visits to the oncologist and her chemotherapy.
Others included financial difficulties that arose indirectly from their cancer
experience, such as credit card debt or childcare.
- Many respondents mentioned having to make sacrifices in other areas of
their life in order to pay for their medical bills. Sometimes this meant
accumulating a large credit card debt to cover other expenses because most
of their money was going directly to medical costs.
- One respondent was thinking about the debt she incurred not only from
co-pays and medications but also for childcare during her treatment because
she could no longer take care of her children on her own.
- Another respondent was thinking about how he had to sell his car and his
house when he went on disability leave because of his cancer in order to pay
for his own needs as well as those of his mother for whom he was
responsible. The cost of his cancer on top of caring for his mother was too
much for him to handle financially.
A few respondents had difficulty calculating the
amount of money borrowed or debt incurred at Q74.
- One respondent thought this item was "a little difficult" because she
only borrowed a small amount of money from her father to help her "get back
on her feet" to pay her bills. She ultimately chose "less than $10,000." She
seemed uncomfortable with her answer, though, because the amount she
borrowed was significantly lower than $10,000.
- Another respondent felt her situation would be better captured by asking
how much of her savings was used to pay for the medical expenses. She
estimated how much she went into debt and added that to the amount spent
from her savings.
- Another respondent had difficulty with this because she was still in
treatment. She was unsure if she would have to go into debt or how much
money the whole process would cost her. She answered "yes" at Q74,
projecting into the future what her expenses would be after all of her
treatments were over.
Recommendations
Leave the questions as they are.
Section 7 – Medical Care
Q79 – At any time since you were first diagnosed with
cancer, did any doctor or other healthcare provider ever discuss with you…
Because Round 1 respondents usually thought only about
their medical doctors when answering this question, we added "or other
healthcare provider" to the question stem. For the most part respondents seemed
to be including a variety of healthcare workers in their answers.
- Most respondents were thinking about their cancer doctors such as
oncologists, radiologists, and surgeons.
- Two included a social worker in their answers at Q79c.
- One respondent included other healthcare workers in the cancer center at
the hospital such as nurses and a volunteer coordinator who led a cancer
survivorship retreat.
Some of the respondents were thinking about both past
and present healthcare workers. For example, one respondent thought of his
oncologist when he was diagnosed and his internist who now does his annual
physicals. However, most respondents were thinking about their health care
providers at the time of their cancer diagnosis and treatment. Sometimes this
was due to the fact that their diagnosis was recent or even current. Others did
not include any current doctors because they did not feel it was applicable. For
example, one respondent, whose cancer was diagnosed 9 years ago, noted that
because she was so far out from her cancer treatment, "you have to remind the
doctor you had cancer."
In general, this question series worked well for
respondents. However, a small number of respondents had difficulty with the "did
not discuss" response category. For example, one respondent with a cancer
diagnoses from the distant past struggled with recall. She seemed reluctant to
admit that she was unsure for several of the items. For these, she marked "did
not discuss" rather than "I don’t know." Additionally, a few respondents had
trouble with Q79d because they did not feel that the doctor had a need to
discuss any lifestyle changes with them. Because of this, they chose "did not
discuss," but were somewhat hesitant. They thought their answer might imply that
the doctors chose not to discuss it with them, rather than that they (the
respondent) felt that the discussion was not necessary. For example, one
respondent said, "That wasn’t discussed with me because I don’t have a problem
with diet or exercise or smoking."
Recommendations
Leave the question as is.
Q80 – At any time since you were first diagnosed
with cancer, did you get all of the medical care, tests, or treatments that you
or your doctor believed were necessary?
For Round 2 we reversed the direction of the question
from "unable to obtain" to "did you get all." All respondents answered "yes" at
Q80 (therefore none answered Q81 or Q82) and all seemed to be interpreting the
question as intended.
- Most respondents noted that their answer was "yes" because they were
able to get every test that their doctor recommended.
- One respondent said his answer was "yes" because he "wasn’t about to not
attend to any of the things they asked me to or try the things they tried."
- Another respondent was thinking about getting all of the "necessary
procedures" such as biopsies and bone scans.
- Some respondents noted that their answer was "yes" "without hesitation"
because they knew their doctors were taking good care of them and making
sure that they received the best care possible.
Recommendations
Leave the question as is.
Section 8 – Effects of Treatment on Life in General
Q83 – Did your cancer, its treatment or the
lasting effects of that treatment ever limit the kind or amount of activities
you do outside of work, such as shopping, child care, exercising, studying, work
around the house, and so on?
Q84 – How long were you limited in the kind or
amount of usual daily activities?
Q85 – Is this limitation ongoing?
We revised these two items from Round 1 to help
respondents more easily quantify their limitations. During Round 2, respondents
did not appear to have difficulty with Q83 and most reported some kind of
limitation. In addition, most respondents had little difficulty reporting the
duration of the limitation and whether or not it was ongoing (Q84 and Q85).
- One respondent reported feeling fatigued and woozy during the time after
treatment, but suffered no long term effects. He reported "yes" at Q83 and
reported "1 year to less than 3 years" at Q84.
- Another respondent reported that she used to "always be on the go" but
the experience with cancer has slowed her down. She cannot take care of her
children as much and feels like a "couch potato."
- One respondent noted that the experience has "changed my life…I’m not
the same person anymore." She reported the change as ongoing.
- One respondent reported being "limited in doing much of anything’ and
reported "less than 6 months" thinking about the time right after her
surgery.
- One respondent still suffered long-term
effects from the cancer and treatment such as neurolysis in his hands and
drop foot. He answered "yes" at Q83, "more than 10 years" at Q84, and "yes"
at Q85.
- One respondent was thinking about being limited during her treatment in
her "tasks at home" such as cooking and housework.
Calculating the amount of time they were limited in
the activities was still challenging for some respondents.
- One respondent said he was confused by the word "ever" in Q84. Because
he was able to do things 90 to 95 percent of the time, he answered "no" but
said that if he was to be "absolutely technical about ‘ever’, I would say
‘yes’."
- At Q85, one respondent calculated how long it would be from the time she
was diagnosed until her current radiation treatment’s end. At Q86 she
answered "no" saying she hoped it would not be on-going, interpreting the
question to mean that the limitation would be "never-ending…lasting
forever."
- One respondent asked whether Q83 is about limitations immediately after
treatment or limitations that happened further off from treatment. She was
unsure how to combine the limitations she experienced after her treatment as
well as her late-onset side effects that are currently limiting her because
in between those two experiences she had no limitations. Ultimately she
reported "1 to 3 years" and "yes, ongoing" for the more recent limitation
only.
A few respondents who were still experiencing a
limitation (some because their treatment was ongoing) felt Q85 did not apply to
them because of the verb tense with which it is worded.
- One respondent who answered "yes" at Q84 left Q85 blank, stating "I am
still limited." She suggested rewording the item to ask, "How long have you
been limited…?"
- Similarly another respondent said that the word "were" implies that you
are finished, and no longer limited. He felt the question should be reworded
to include those who are still experiencing limitations.
- A third respondent also commented that it was hard for him to pick a
response category because the question is in the past tense. He noted he is
currently limited due to his treatment and was unclear how long the
limitation would last. He marked "yes" at Q85.
Recommendations
Revise Q84 to read, "How long have you been limited in
the kind or amount of usual daily activities?" "Have you been" should apply
equally well to those who were limited but no longer are, as well as those who
still are limited.
Q87 through Q90 – Asked/Received Help
Revisions to these items were based on the workgroup’s
desire to capture the experiences of those who asked for but did not receive
help. Although no respondents reported asking for but not receiving, help, most
respondents were able to distinguish between the two. For example, one
respondent explained that asking is when you do not know if someone will help
and receiving is when you know and someone says they will help without asking.
He answered "no" at Q87 and Q89. However, two respondents answered "yes" at Q87
and Q89 for when they received help without asking for it.
- One respondent noted that she has never asked her daughter for help but
that her daughter is always available to help and drive her to appointments.
She was unsure how to answer and ultimately decided to choose "yes" at both
Q87 and Q88.
- Another respondent answered "yes" at Q87, even though she stated, "help
was there without asking…I didn’t have to ask." The respondent was thinking
about her husband whom she did not need to ask, "It was understood."
Two respondents missed the skip instructions when
answering "no" at Q87 and Q89.
Recommendations
Leave the questions as they are.
Q93 – In your own opinion, what do you think are
the chances that your cancer will come back or get worse within the next 10
years?
Because Round 1 respondents sometimes answered this
question based on their doctors’ rather than their own opinions, even when the
two opinions differed, we added "in your own opinion" to the beginning of the
question. For the most part, Round 2 respondents appeared to be answering based
on their own opinion. Sometimes respondents mentioned things their doctors had
told them, but only as a way to establish their own opinion. We also added "I
don’t know" to the response options, with somewhat mixed results. One respondent
chose that option, saying, "Only God knows." Two others chose "fairly low" even
though, in explaining their answers, they noted that they did not really know.
One respondent mentioned that this question elicited a
lot of emotion for him, saying "this is a tough question for someone with
cancer."
Recommendations
Leave the question as is.
Q94
– Which of these, if any, have been positive things about your experiences with
your cancer, its treatment, or the lasting effects of that treatment?
This item was a check-all-that-apply in Round 1, and
several respondents were uncomfortable leaving the response boxes blank at one
or more of the sub-items when their answer was "no." For Round 2, we added two
response options at each sub-item so respondents could check either "yes" or
"no." This change seemed to work well. Eleven respondents selected "yes" for all
four items. Most seemed to be thinking positively about their experiences with
cancer and had no difficulty with their answers. Of the six respondents who
answered "no" at one or more of the sub-items,
four did so to show disagreement with the statement.
- One respondent answered "no" for item "d" because she did not make any
changes for healthier habits.
- Another respondent answered "no" for item "b" because she thinks she has
"gotten worse" and "no" for item "c" because she had already made big
changes in her life before she had cancer (when her daughter was born).
- One respondent answered "no" for all sub-items, saying "it didn’t make
me a better person, it made me worse."
Two others answered "no" at the sub-items to show the
statement did not apply to them. For example, one respondent answered "no" at
item "d" because he did not think he needed to change his habits (he always had
healthy habits). However, some respondents were reluctant to say "no" when an
answer did not apply to them, and instead left the sub-item blank.
- One respondent was unsure how to interpret the "a" and felt that her
cancer had nothing to do with "b",
both of which she left blank because she felt they did not apply to her.
- Another respondent left "a" blank, stating that she did not think her
experiences had made her stronger.
- One respondent left items "a,"
"c" and "d" blank saying, "It has not made me a stronger person, I am the
same person…I haven’t made any positive changes in my life."
Respondents had several suggestions for improving the
question.
- One respondent observed that the question does not tell you that you can
pick more than one answer, and thought that you should be allowed to select
"yes" or "no" at more than one of the sub-items.
- Another respondent commented that it was "confusing to lump your
experiences with your cancer, its treatment, or the lasting effects…" and
instead this should be separated into multiple questions. The same
respondent said there should be a "maybe" response for the sub-items because
"there should be a middle of the road."
- A third respondent crossed out the word "better" at Q94b and wrote in
"differently" saying, "I cope differently, but I don’t know if it’s better."
Respondents were asked if there were any other
positive things related to their cancer besides those listed. Examples of the
kinds of things they added include:
- A career change.
- Appreciation for life, especially the little things.
- Closeness with family members and friends.
- Awareness of issues concerning health and cancer.
- Knowledge from support groups.
Recommendations
Revise Q94 to read:
"Have any of these been positive things about your
experiences with your cancer, its treatment, or the lasting effects of that
treatment?" MARK YES OR NO ON EACH ROW
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