Summary of Recommendations from Cognitive Testing of the Spanish Translation 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 in English and one in Spanish to assess how well
respondents are able to understand and answer the questionnaire items. The
cognitive interviews in Spanish were conducted from November 30th to December
8th and included eight respondents. This memo summarizes findings and
recommendations from this final testing effort.
Methods
Recruiting
It was a challenge recruiting this specialized
population of Spanish-speaking cancer patients and survivors. In June we started
by posting Spanish-language flyers at local hospitals, clinics and support
groups we identified through our own or the workgroup’s contacts. However, by
September, only four respondents had called the recruiting hotline. We then
expanded our efforts to local stores, churches, and beauty salons. We also drew
on internal resources at Westat by posting the flyer on kitchen notice boards,
networking with Hispanic colleagues, and submitting an announcement on the
company’s Intranet site. In addition, an announcement about the study was made
on the Spanish radio show El Café del Inmigrante,
hosted by a local immigration lawyer. Eventually, a total of fifteen people were
screened as potential respondents for the eight interviews.
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. Table 1 shows the distribution of demographic
characteristics across Spanish-language interview respondents. About one-third
of them had a current diagnosis and the rest were skewed more towards the
distant past. They tended to have a higher education level, with three holding
an advanced degree. One respondent with two years of education requested that
the questionnaire be read to her. It is not clear whether this was because of
vision problems or literacy. Finally, our respondents mostly originated from
Central and South America. Only one Puerto Rican respondent represented any of
the three largest Latino groups in the U.S. (Mexican, Cuban and Puerto Rican).
This likely does not accurately reflect MEPS Spanish-language respondent
demographics.
Table 1. Distribution of Spanish-language respondent
demographic characteristics
| Demographic Characteristic |
Number of
Respondents |
| Gender |
| Female |
5 |
| Male |
3 |
| Country of Origin |
| Argentina |
1 |
| El Salvador |
2 |
| Colombia |
2 |
| Dominican Republic |
1 |
| Ecuador |
1 |
| Puerto Rico |
1 |
| Education Level |
| Less than HS |
2 |
| HS |
2 |
| College Degree |
2 |
| Advanced Degree |
2 |
| Time Since Last Treatment |
| Current Diagnosis |
3 |
| 2 years or less |
1 |
| 2 – 6 years |
1 |
| 6 + years |
3 |
| Employment Status when Diagnosed |
| Employed |
6 |
| Unemployed |
2 |
Protocol Development
In general, we followed the same protocol development
process as described in the Round 1 memo. The Spanish-language protocol also
included probes on specific translations of words and phrases that we felt might
be problematic (e.g., secuelas for "lasting effects"). The Spanish-language
interview protocol appears in Attachment D.
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
(four respondents chose to do the interview at their home or in an office). 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
Spanish-language Interview data that we did for the Round 1 and 2 interview
data, as described in the October 3rd memo.
The primary focus of analysis in this round of testing was on the effectiveness
of the Spanish translation.
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. There were no respondents with multiple
cancers so there was no indication of how the translation would work for such
respondents.
Cancer Diagnoses in the Distant Past
Four respondents had been diagnosed six or more years
ago. None seemed to have trouble remembering and answering the questions. One
respondent even brought in a folder with much of his medical information in it,
but he ended up not having to refer to it during the interview because, he said,
besides exact dates, he had little trouble remembering his experience. In the
employment section, however, all seemed to be thinking only about the time of
diagnosis and treatment, not including their current situation.
"Lasting Effects (Secuelas)"
The word, "secuelas" was used in the Spanish
translation for the term, "lasting effects." Two respondents were not familiar
with the word "secuelas." One Central American respondent with two years of
education had never heard the word, but said she understood the concept of
"cuidado de seguimento regular" (follow-up care), describing it as what she
needs to do to take care of herself and follow the doctor’s instructions so her
cancer does not come back. She gave the example of getting a colonoscopy every
two years. It seemed that she understood the word "secuelas" in the context of
the cover page and then when it first appears in question 9.
The Puerto Rican respondent interpreted "secuela" as
sequel. All other respondents could provide examples for emotional, financial
and medical effects. For most in this group, "secuelas" seemed to work better
than "efectos secundarios" (secondary effects), which implies medical issues
only. However, because we were unable to test the translation with respondents
from several large Hispanic groups in the U.S., it may be worth including an
alternate term with "secuelas," such as "efectos secundarios"
(secondary effects) or "consecuencia" (consequences). Both of these terms were used by a
few respondents when asked to define lasting effects.
Recommendations
Consider using "efectos secundarios" or
"consecuencia" along with "secuelas".
Skip Patterns
The Spanish-language respondents seemed to have more
trouble with the skip patterns than the English-language respondents did. They
consistently overlooked the skip instructions in various parts of the
questionnaire and, as a result, often mentioned that certain questions did not
make sense for them. For example, some respondents who had answered that they
did not work ended up reading questions about changes to their work schedules.
One respondent suggested that the questionnaire include an example or some sort
of explanation about how to navigate the skip patterns. We note that in general,
in both English and Spanish, skip patterns tend to be more problematic for those
with lower education levels or literacy skills. In this round of testing,
however, respondents of all education levels experienced difficulty.
Section- and Item-Specific Findings and
Recommendations
Respondents, in general, appeared to have positive
impressions of the questionnaire. They thought the questionnaire was good and
worth completing but that certain questions were too wordy. One respondent said
it made him emotional to remember these experiences and thought others might
have a problem with that. One respondent was in tears recalling her cancer
diagnosis, but insisted on completing the interview.
Cover Page
Most respondents felt that the cover page was clear
and for the most part, respondents noted that they thought the questionnaire
would be about the effects ("secuelas") of their cancer. One respondent said,
"No hay nada que no sea legible, que no puedo entender" (There is nothing here
that isn’t legible, that I don’t understand). Another said, "Es perfecto." (It’s
perfect). Three respondents, when thinking about the effects of their cancer,
included aspects beyond the physical effects of cancer (symptoms, treatment,
etc.) such as the emotional, psychological and financial effects as well as how
cancer affects their lives in areas such as work and family. One respondent
reported that he thought the survey would be about describing his personal
cancer history.
A few respondents reacted to the title and sponsor of
the survey. Based on the information provided on the cover page, one respondent
said it would be worth her time to complete the survey. Another young respondent
stated after reading just the title that the word cancer is a disease that
affects many. He lost both of his parents and a sister to cancer. A third
respondent who had the questionnaire read to her reacted emotionally to the
title of the survey, saying the word "cancer" still worries her even though
overall she feels fine because she has been cancer-free for five years. "Me da
preocupación, por mi y por muchas personas..." ("I worry about myself and many
other people…").
Recommendations
Leave the cover page as is.
Section 1 – Cancer History
Q1 Have you ever been told by a doctor or other health
professional that you had cancer or a malignancy of any kind?
Q1 ¿Le ha dicho alguna vez un medico u otro
profesional de la salud que usted tenía cáncer o un tumor maligno de cualquier
tipo?
All but two respondents appeared to understand and
answer this question as intended. One respondent from South America with
post-graduate education marked "no," explaining that a doctor never told him he
had prostate cancer. He went for a routine physical and found out he had cancer
as a result of a PSA test. When probed, he said that he would have continued
completing the survey (despite the note to stop here).
Another respondent was unsure how to answer the question.
She had become emotional while discussing her cancer history and needed to
reread this question several times. She thought it should be simpler, suggesting
it read, "¿Le han dicho alguna vez que usted tenia cáncer,
sí o no?" (Have you ever been told you have cancer, yes or no?).
Recommendations
Leave the question as is.
Q3 Are you currently being treated for cancer – that
is are you planning for or recovering from cancer surgery, or receiving
chemotherapy, radiation therapy, or hormonal therapy for your cancer?
Q3 Actualmente, ¿recibe tratamiento para el cáncer- es
decir piensa tener o se está recuperando de una cirugía para el cáncer, o está
recibiendo quimioterapia, radioterapia o terapia hormonal para su cáncer?
Two respondents answered "yes" to this question. One
who has breast cancer included the hormonal pills (Arimidex) she is taking.
Although she will take the pills indefinitely, for the first three years she
still considers it as part of her treatment
Respondents who answered "no" defined "currently being
treated" as chemotherapy, radiation or medications specific to cancer treatment
or prevention.
- One respondent who mentioned that he is on a cholesterol-lowering drug
knew that it is not related to his cancer treatment.
- A respondent who marked "no" interpreted "treatment" as taking
pills or medication and going to a clinic to receive the treatment, none of which she
is doing currently
Recommendations
Leave the question as is.
Q5 About how long ago did you receive your last cancer treatment?
Q5 ¿Hace cuánto tiempo más o menos que recibió su
último tratamiento para el cáncer?
Respondents did not have trouble
recalling when they had their last cancer treatment or what to count as "your
last cancer treatment." This may be in part because all had only one cancer
diagnosis. One respondent said it was not difficult for him to remember because
just this past June he celebrated five years since he finished chemotherapy.
Another respondent found the question easy to answer because he thought of just
one instance, his surgery, as treatment. The only respondents who seemed to have
trouble with this question were those that had missed earlier skip instructions.
Recommendations
Leave the question as is.
Q7 What was the most recent year a doctor or health
professional told you that your cancer had come back?
Q7 ¿Cuál fue el año más reciente en el que su médico u
otro profesional de la salud le dijo que le había vuelto a aparecer su cáncer?
This question did not apply to any of our respondents.
Recommendations
There is no information on which to base a recommendation for this item.
Section 2 – Changes to Your Work Schedule
Q9 At any time from when you were first diagnosed with
cancer until now, were you working for pay at a job or business?
Q9 En algún momento, desde la primera vez que
le diagnosticaron cáncer hasta ahora, ¿estuvo trabajando por un salario en un trabajo
o negocio?
When answering Q9, almost all respondents tied
employment status to their cancer, treatment and lasting effects of that
treatment. The respondents who were employed at the time of diagnosis answered
the questions consistently with the job they held at the time of diagnosis and
treatment. However, respondents who were not employed at diagnosis,
but had worked since,
often did not consider their more recent employment status when answering Q9.
For example, one respondent began working 2 years after diagnosis and treatment;
another sold her business as soon as she learned of her diagnosis. These
respondents answered "no" at Q9 and skipped out of the section entirely, such
that the questionnaire did not capture any employment changes they might have
had subsequent to their diagnosis and treatment.
The following results are based on the four
respondents who ended up going through the entire employment section.
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?
Q10 En algún momento desde la primera vez que le
diagnosticaron cáncer, ¿tomó tiempo libre prolongado con el pago en el trabajo,
tiempo libre sin pago o hizo cambios en su horario, sus responsabilidades o su
situación de trabajo?
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?
Q11 En algún momento desde la primera vez que le
diagnosticaron con el cáncer, ¿pidió tiempo libre prolongado con pago en
el trabajo, tiempo libre sin pago o cambios en su horario, sus responsabilidades
o su situación de trabajo?
Q12 Did you ask for these work changes…?
Q13 Did you make these work changes…?
Q12 ¿Pidió estos cambios en el trabajo…?
Q13 ¿Hizo esto cambios en el trabajo…?
Four of the eight respondents answered "yes" at Q10.
These respondents seemed to be interpreting the item as intended and thought
about taking an extended period of time off from work. One respondent answered
"no" at Q10 because he only took two days off after his surgery.
Two respondents had some difficulty with this
sequence, as one missed the skip instruction to Q13 and another was confused by
the wording and progression of the questions.
- The respondent who missed the skip to Q13 explained that she worked at a
medical facility and her doctor advised her to take time off. She did not
explicitly ask, but it was understood that she would need to take that time
off, which was with pay.
- One respondent said he did not know what "estos cambios"
("these changes") at Q13 were referring to. He explained that he did not make any
changes to his work schedule; rather he just took time for his surgery. The
respondent also felt that he had to read Q11 and Q12 in order to understand Q13.
Recommendations
Consider revising Q12 and Q13 to read, "¿Pidió
tomar permiso o hacer cambios en el trabajo…?" (Did you ask to take leave or make changes…);
¿Tomó permiso o hizo cambios en el trabajo…" (Did you take leave or make changes…)
Q14 Did you ever take extended paid time off from work
(vacation, sick time and/or disability leave)? By extended time off, we mean
more than an occasional day off here and there?
Q14 ¿Alguna vez tomo tiempo libre prolongado con pago
en el trabajo (vacaciones, permiso por enfermedad o permiso por discapacidad)?
Por tiempo libre prolongado nos referimos a más de un día de permiso ocasional
de vez en cuando.
Respondents who answered this question seemed to
interpret "extended paid time off as intended."
- One respondent who answered yes described how she took paid time off
during her surgery and chemotherapy treatment. She did
not include disability leave in her answer because, although she had
considered taking it when she was sick, she ultimately did not end up doing so.
- Another respondent answered "yes" because he took off work Wednesday
through Friday during the weeks he received chemotherapy. He interpreted
extended paid time off as a person who is off work but still paid regularly.
- One respondent thought of the two weeks’ sick time with pay that he took
off for tests (biopsy, bone scan), a second opinion at Johns Hopkins (that
confirmed the diagnosis) and then surgery and recovery as extended time off.
Recommendations
Leave the question as is.
Q22 Did you ever change from working part-time to
working full-time?
Q22 ¿Cambio alguna vez de trabajar tiempo parcial a
trabajar tiempo completo?
Only one respondent had difficulty with this item. He
interpreted the question to ask whether he had ever stopped working full-time ,
which he considered himself as having done when he took two weeks off for his
operation and recovery. All other respondents appeared to interpret the item as
intended.
Recommendations
Leave the question as is.
Q30 Did you ever change from a set work schedule,
where you start and end at the same time every day, to a flexible work schedule,
where your start and end times vary from day-to-day?
Q30 ¿Cambió alguna vez de trabajar en un horario fijo,
en el que comienza y termina a la misma hora todos los días, a un horario de
trabajo flexible, en el que la hora de comenzar o terminar el trabajo cambia de
día a día?
All respondents interpreted this item as intended. For
example, one respondent said that he already had flexible hours at his work and
answered "no". During testing, interviewers noticed there was a typographical
error in the question wording.
Recommendations
Correct typographical/grammatical error.
"…todas los dias…" should be
"todos los dias…"
Q36 Did you make any other type of work arrangements
because of your cancer, its treatment, or the lasting effects of that treatment?
Q36 ¿Hizo algún otro tipo de cambio en el trabajo
debido a su cáncer, su tratamiento o las secuelas de ese tratamiento?
All respondents reported no additional changes at this
item. However, one respondent mentioned later in the questionnaire (Q37) that
she shared some responsibilities with a coworker when she returned to her job as
a way to lighten her workload. When explaining her reasoning for not including
this change at Q36, she said that she didn’t request this change herself, rather
her employer lightened the workload for her.
Recommendations
Leave the question as is.
Q37- Because of your cancer, its treatment, or the
lasting effects of that treatment, did you ever decide not to pursue an
advancement or promotion?
Q37 Debido a su cáncer, su tratamiento o las secuelas
de ese tratamiento, ¿decidió usted alguna vez no intentar obtener un ascenso o
una promoción?
One respondent with low education level did not
understand the terms for raise or promotion (ascenso o promoción). Another
respondent pointed out that the question is negatively worded "decidió alguna
vez NO intentar" (did you ever decide not to pursue) such that a "no"
answer may in fact mean "yes" (as in, "no, I decided not to pursue").
Recommendations
While the respondents’ issues are valid, we
are not recommending a change to the item without further testing.
Q38 Because of your cancer, its treatment, or the lasting
effects of that treatment, did you retire earlier than you had planned?
Q38 Debido a su cáncer, su tratamiento o las secuelas
de ese tratamiento, ¿se jubiló usted antes de lo que había planificado?
Q39 Because of your cancer, its treatment, or the
lasting effects of that treatment, did you delay retirement beyond when you had planned?
Q39 Debido a su cáncer, su tratamiento o las secuelas
de ese tratamiento, ¿pospuso usted su jubilación más allá de lo que había
planificado?
Respondents seemed to be interpreting the item as
intended. One respondent who answered "no" at Q38 said he would like to retire
next year when he is 65, but this decision is unrelated to cancer. Another
respondent who answered "no" to both items, said that given his age, 27, he is
not yet thinking about retiring.
One respondent, who answered "no" at Q38 did not
understand what "más allá" meant at Q39. She wondered if it was asking whether
she waited to retire until she was older. She answered "no" reporting that
nothing changed. The respondent did admit that she had thought about retiring
because her treatment caused her to get tired being on her feet all day and she
also wanted to spend more time with her daughter, who has epilepsy.
Recommendations
Leave the questions as they are.
Section 3 – Other Aspects of Work
All four of the respondents who were employed at the
time of their diagnosis and treatment answered this section about other aspects
of work (Q41 – Q47).
Q44 Did you ever stay at a job in part because you
were concerned about losing your health insurance?
Q44 ¿Alguna vez permaneció usted en un trabajo en
parte porque le preocupaba perder su seguro medico?
Q45 Were you concerned about losing your health
insurance because of your cancer?
Q45 ¿Le preocupaba perder su seguro medico a cause de
su cáncer?
Most respondents seemed to be interpreting these items
as intended. One respondent who answered "yes" at Q44 explained that she
received all health benefits from her job. She said that keeping insurance for
herself and her family was the most important reason she kept working. One
respondent who answered "no" reported that he does not get health insurance at
his job. Instead, he pays for his own insurance and upgraded his insurance upon
learning of his cancer diagnosis.
Recommendations
Leave the questions as they are.
Q47 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?
Q47 ¿Permaneció alguna vez so esposo, esposa o pareja
en un trabajo en parte porque a él/ella le preocupaba perder el seguro médico
para la familia?
During Round 1 respondents had difficulty answering
this item because there are multiple assumptions about insurance, marital, and
employment status embedded in it. For the subsequent rounds of testing, 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. The respondents that did use the "not applicable" option used it when
they were either not married or because the spouse was working but there were
not any concerns about health insurance.
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. Several respondents answered "no" when "does not
apply" may have been more appropriate for their situation.
- One respondent answered "yes" to this question. While her husband has
worked at his job for 32 years, he does not have health insurance through his employer.
- Another respondent answered "no" to this question and explained that on
the day of her diagnosis her husband lost his job and thus his medical insurance.
- One respondent answered "no" to this question. Neither the respondent
nor her spouse have insurance through their jobs, rather they buy their own insurance.
Recommendations
Given the workgroup’s decision to keep "does
not apply" in the English-language version, leave the Spanish
translation as is.
Section 4 – Caregivers
Q48 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?
Q48 Desde la primera vez que le diagnosticaron con el
cáncer, ¿le ha proporcionado cuidado algún amigo o familiar durante o después de
su tratamiento para el cáncer?
All eight respondents reported having a caregiver.
Respondents included family members such as spouses, in-laws, mothers, fathers
and sisters. They did not appear to be thinking about medical professionals.
When asked to describe the type of caregiving provided, respondents mentioned
helping out around the house, driving them to and from appointments, helping
them with personal care, taking care of children and providing moral or
emotional support.
Only one respondent had difficulty with this item. She
reported having trouble understanding the concept of care, asking, "¿Cuidado en
qué sentido? … Hay diferentes clases de cuidado" ( In what way? There are
different kinds of care). She gave various examples of emotional and physical care. In the end she
answered "yes" because her family was always with her ("dedicaron a estar
conmigo" they dedicated themselves to be with me) and gave her emotional support
which she considered care.
Recommendations
Leave the question as is.
Q49 Because of your cancer, its treatment, or the
lasting effects of that treatment, did any of your caregivers ever take sick
leave, leave without pay, or change their hours, duties or employment status?
Q49 Debido a su cáncer, su tratamiento o las secuelas
de ese tratamiento, ¿tomó alguna vez alguna de las personas que le proporciono
cuidados tiempo libre por enfermedad, tiempo libre sin pago o cambio el horario,
las responsabilidades o la situación de trabajo?
Almost all respondents had difficulty with this item.
When they were asked what had made the question difficult, several said they
thought that it was too wordy.
Once they reread the question they did not have trouble answering it.
- One respondent had to read it two or three times. After the interviewer
rephrased the question, the respondent decided it was fine the way it was
written or suggested it be more direct "mientras usted estaba bajo
tratamiento…" (While you were under treatment).
- Another respondent thought that this question was too wordy and said the
sentence "dragged out" (especially "alguna vez alguna de las
personas"). However, he ultimately understood the intent after rereading. He suggested
that it be broken into two sentences, first asking if a change was made in
their work and then "This can include…" with a list of the different
examples.
- A third respondent noted that the question had too many words
"demasiadas palabras" . This respondent also pointed out a grammatical error
in the third response option ("estaban trabajando" should be plural).
One respondent had difficulty reporting the changes
his caregivers made. He thought one of his caregivers took time off but was not
sure what kind of time off was taken. He eventually answered "yes" because he
knows that it happened, he was just not familiar with the details.
Recommendations
Consider changing the beginning phrase of
question 49 to match Q48 (Since the time you were first diagnosed with
cancer...) for both Spanish and English and use "permiso"
instead of "tiempo libre" to shorten the question.
Q50 did any of your caregivers ever take extended paid
time off from work, unpaid time off, or make a change in their hours, duties, or
employment status for at least 2 months?
Q50 ¿Tomó alguna vez alguna de las personas que le
proporciono cuidados tiempo libre prolongado con pago en el trabajo, tiempo
libre sin pago o hizo un cambio en el horario, las responsabilidades o la
condición de trabajo por lo menos durante 2 meses?
Only two respondents reported that their caregivers
took leave or made changes to their work status for more than two months. One
respondent had difficulty calculating the employment change. She was not sure if
she should calculate the two months as continuous or total time. She decided to
provide her answer with continuous time because this would be easiest to
calculate. She was thinking of an aunt who took off one or two days a week for
the duration of her cancer treatment.
One respondent with multiple caregivers had difficulty
with the entire section. He answered "yes" at Q50 but "no" to all subsequent
items in the section (including Q63). He said he found the section difficult
because his multiple caregivers all had different work situations.
Recommendations
While the respondents’ issues are valid, we
are not recommending a change to the item without further testing
Section 5 – Experiences with Health Insurance
Most respondents had little trouble understanding or
answering the health insurance questions, describing a variety of situations.
Two respondents received government medical assistance but only one counted it
as insurance. The respondent who answered "no" said she did not have insurance
and therefore asked for assistance from social workers, who provided assistance
so that she did not have to pay for anything. The respondent who answered "yes"
described how she met with a social worker at Holy Cross Hospital who filled out
paper work for government medical insurance for her cancer in order to cover all
costs.
Q68 Was there ever a time when health insurance
refused to cover a visit to the doctor or facility of your choice for your
cancer?
Q68 ¿Hubo alguna ocasión en la que el seguro medico se
negó a cubrir una consulta para su cáncer con el médico o la instalación de su
elección?
Four respondents had difficulty with the translation
of "facility of your choice." One, who answered "no,"
said she did not understand the term "instalación." Another said he did not
understand the phrase "instalación de su elección" and reported that it was "too
vague". He suggested use of more specific examples like "clinic, hospital or
office."
Recommendations
Although it would mean more words, consider
revising the question to read, "¿Hubo alguna ocasión en la que el seguro
medico se negó a cubrir una consulta para su cáncer con su médico o la
clínica, hospital o consultorio preferido?"
Q70 Were you ever denied health insurance because of
your cancer?
Q70 ¿Le negaron alguna vez un seguro medico debido a
su cáncer?
For Round 2 of the English-language testing, we
included a "does not apply" option at this item to help alleviate ambiguity in
respondents’ "no" answers. One respondent answered "no" but said she had never
applied for health insurance. She was instead thinking about the fact that she
had never been the health assistance she received.
Recommendations
Leave the question as is.
Section 6 – Finances
After the first round of English-language testing, 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 for the Spanish respondents, as intended.
Q71 Have you or has anyone in your family had to
borrow money or go into debt because of your cancer, its treatment, or the
lasting effects of that treatment?
Q71 ¿Ha tenido usted o alguien de su familia que pedir
dinero prestado o endeudarse debido a su cáncer, su tratamiento o las secuelas
de ese tratamiento?
All but one respondent answered "no" to Q71.
Respondents seemed to be interpreting the item as intended. For example,
thinking about whether they had to borrow money or make other financial
arrangements in order to pay for treatment or to support their families because
of their illness. Respondents included things like taking out a second mortgage
on their house,
borrowing money, and going into debt. Respondents understood that medical
expenses could also be considered a big financial burden. One respondent said,
"Thankfully I did not have to borrow money or go into debt as a result of my
cancer." The one respondent who answered "yes" explained how she had to ask a
relative for money so that her father could come to the US in order to take care
of her. She did not have any trouble recording the amount at Q72.
One respondent, who sold her business after her
diagnosis, answered "no" at Q71. She did not consider this to be a "sacrifice;"
rather it was simply something that had to be done.
Recommendations
Leave the questions as they are.
Section 7 – Medical Care
Q77 At any time since you were first diagnosed with
cancer, did any doctor or other healthcare provider, including your current
healthcare provider, ever discuss with you…
Q77 En algún momento desde la primera vez que le
diagnosticaron cáncer, ¿hablo alguna vez con usted algún médico u otro proveedor
de cuidado de salud, incluyendo su proveedor de cuidado de salud actual, acerca
de…?"
Some respondents had difficulty navigating this
series, in large part because they did not seem to realize that sub-items
b through d were tied to the question stem. The fact that the first letter for
each sub-item was capitalized may have contributed to the difficulty;
respondents may have mistaken them for independent questions.
Most respondents were thinking strictly of their
medical doctor when answering this series. Only one said that a nurse spoke to
him about his diet, exercise and smoking habits.
Respondents seemed to be interpreting the phrase
"efectos secundarios tardios o a largo plazo" (late or long-term side effects)
as intended and gave examples of effects that continue after treatment. In
general, these were considered the same as "secuelas" (lasting effects) but
respondents seemed to be more familiar with this alternate phrasing. One
respondent said that she understood "efectos secondarios tardios o a largo
plazo" to mean that you need to change your life, reduce your stress and thought
it has the same meaning as "secuelas."
- One breast cancer respondent gave examples of having pain after surgery,
losing feeling and difficulty breathing as a result of her implant. She also
thought it had the same meaning as "secuelas", but said that while she
understands both phrases, she hears "efectos secondarios" used more frequently.
- One respondent interpreted "efectos secondarios tardios o a largo
plazo" as intended, reflecting on her experiences with urinary infections or
bleeding as a result of her uterine cancer.
- Another younger respondent gave the example that he may be more likely
to develop other types of cancers later in life because of his treatment.
- One respondent mentioned that her menstrual cycle had stopped, hot
flashes, and a bad aftertaste in her mouth even years later.
Recommendations
To make it clearer that the sub-items are
connected to the question stem, reformat them to begin with an ellipsis
(…) and lowercase letters.
Consider using "efectos secundarios" or
"consecuencias" throughout the survey in addition to or instead of
"seculas" since this term appeared to be more universally understood by
the respondents.
Q79 Which of these reasons did you not get all of the
medical care, tests, or treatments that you or your doctor believed were necessary?
Q79 ¿Por cuál de estas razones usted no recibió
todo el cuidado médico, exámenes y tratamiento que usted o su médico
consideraban necesarios?
Q80. Which one of these is the main reason that you
did not get all of the medical care, tests, or treatments you or a doctor believed you needed?
Q80 ¿Cuál de estas es la razón principal por la
que usted no recibió todo el cuidado médico, examines y tratamiento que
usted o su médico consideraban necesarios?
Only two respondents received these items, one of them
because of a missed skip (he only provided one answer at Q79 and so should have
skipped past Q80).
One reported that early in his cancer experience the insurance he had at the
time of his diagnosis would not pay for his surgery and hospitalization, so he
was not able to get treatment immediately. Later on, he obtained insurance and
all treatments were covered. At Q80, he marked that the doctor did not accept
his insurance, yet he also said aloud that his original insurance would not
cover hospitalization.
Recommendations
Leave the questions as they are.
Section 8 – Effects of Treatment on Life in General
Q81 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?
Q81 Su cancer, su tratamiento o las secuelas de ese
tratamiento, ¿limitaron alguna vez el tipo o la cantidad de actividades que
usted hace fuera del trabajo, tales como ir de compras, cuidar a los niños,
hacer ejercicio, estudiar, hacer quehaceres domésticos, etc.?
Most respondents did not appear to have difficulty
with Q81 and half 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 (Q82 and Q83).
Two respondents did have difficulty determining what
to include as mental tasks. One was unsure how to answer initially because only
her memory was affected by the treatment..
Similarly, a second respondent seemed unsure whether to include forgetfulness
due to the chemotherapy treatments. Both respondents ultimately answered "yes."
Recommendations
Leave the question as is.
Q85 through Q88 – Asked/Received Help
Q85 Have you ever asked for help getting to a doctor
or other healthcare provider because of your cancer, its treatment, or the
lasting effects of that treatment?
Q85 ¿Ha pedido alguna vez ayuda par air al
médico o a otro proveedor de cuidado de salud debido a su cáncer, o las secuelas
de ese tratamiento?
Q86 Did you ever receive help getting to a doctor or
other healthcare provider?
Q86 ¿Recibió alguna vez ayuda para ir al médico
o a otro proveedor de cuidado de salud?
Revisions after Round 2 of the English-language
testing to these items were based on the workgroup’s desire to capture the
experiences of those who asked for but did not receive help. For the most part,
respondents were able to distinguish between "asking for" help and "receiving"
help.
One respondent who returned to the Dominican Republic
during her cancer treatment answered "no" at Q85 because she said her family
there always knew when she needed help or was not feeling well so she never had
to ask for help. She said in the Dominican Republic there was always someone
available to take her to the doctor’s, whereas by contrast, while she was in the
U.S. at the start of her treatment, she did have to ask for help because her
family there were busy working. She did not include her U.S. experience in her
answer, however.
Recommendations
Leave the questions as they are.
Q92 Which of these, if any, have been positive things
about your experiences with your cancer, its treatment, or the lasting effects
of that treatment?
Q92 ¿Considera que alguno de los siguientes aspectos
ha sido algo positive respecto a sus experiencias con el cáncer, el tratamiento
o las secuelas de ese tratamiento?
Respondents seemed to be interpreting this item as
intended. In addition, all seemed to be willing to answer "no" to some of the
items. For example, one respondent who answered "no" to sub items a - c said that
cancer had weakened him and that because of that it is harder to face the
challenges of life. This respondent went on to joke at sub-item d that if they
had not operated on him he would be dead, so in that sense it has made him
stronger and answered, "yes."
For Round 2 of the English-language testing, two
response options were added at each sub-item so respondents could check either
"yes" or "no." However, about half the Spanish-language respondents had
difficulty with the formatting. They thought they had to select which of the
sub-items applied to them, rather than answering "yes" or "no" at each one.
Recommendations
Leave the question as is.
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