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Home » Latest Stories: Alzheimer’s, Dementia and Brain Health » Article » Online Studies for Caregivers: A Participant Shares His Story

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Online Studies for Caregivers: A Participant Shares His Story

Bob Toia, a caregiver to his wife living with late-stage Alzheimer’s, wanted to get involved in research. His path: online caregiver studies. Here’s what these studies can look like.

Bob Toia, 77, had a career in drug research, developing clinical trials for new drug entities at Proctor and Gamble. During those years, he learned, start to finish, the process of running a trial.

When he had multiple, personal experiences with Alzheimer’s disease in his family — including his mother living with Alzheimer’s — he knew he wanted to be involved in the fight for a cure somehow. He just needed to find the path that was right for him.

He got involved in various fundraisers. In 2016, he and his wife Kathy formed a team to participate in the local Dayton Alzheimer’s Association walk, an annual fundraiser event that draws caregivers and people living with Alzheimer’s. 

Then, in 2019, Kathy was diagnosed with Alzheimer’s, too. 

“I think I was probably in denial for a couple years prior to that,” Toia told Being Patient. “I was periodically getting told by neighbors or friends of ours that they were thinking something wasn’t quite right,” he said of the time leading up to his wife’s diagnosis. “I just said ‘We’re getting older,’ or some other excuse, which was silly — and I should have known better.”

Toia had, in fact, noticed some things were off with Kathy: for example, a lack of alertness, which eventually led him to confiscate her car keys out of precaution. “Then she started to not be able to follow recipes,” he said. “She always did the cooking, and I washed the dishes.”

Toia was motivated to go beyond the fundraising walks. “It didn’t seem like I was doing enough to be an advocate for Alzheimer’s individuals,” he said. Through various newsletters ( including Being Patient’s ), and online research of his own, Toia discovered different clinical trials he could participate in as a caregiver — and many of them were online, making them much more accessible to someone caring for a loved one full time.

Since 2016 Toia has been participating in trials run by the University of California San Francisco, the National Institutes of Health, Mayo Clinic, and Arizona State University to name a few. According to Toia, none of the studies have required daily participation, and many require quarterly data collected via questionnaires. 

“When I was caring for her [Kathy] at home, the only time I had, really, was when she was in bed because otherwise I’d be monitoring her all the time, so I could do it at night,” he said. “There isn’t a whole lot you can do to be helpful at night, because offices are closed — so this way I could participate and add to my desire to be an advocate for Alzheimer’s.”

After finding a study online that he thinks he is eligible for, Toia participates in a preliminary screening for the study, which is often delivered via a SurveyMonkey questionnaire. From there researchers will contact Toia to let him know whether or not he qualifies to participate.

The focus of some of the studies has been to monitor quality of life and health of the caregiver — only two studies have also involved Kathy. The studies contain questions about Toia’s health, sleep, and exercise patterns. Toia has also been asked whether he practices self-care and in what kinds of ways, what setting he is caregiving in and whether he receives help from other people in caregiving.

Several studies monitored Toia’s cognition to see if it is being impacted by caregiving. According to Toia, he has not shown any decline in the eight years he has been a participant in one cognition study. It’s one of the few studies where Toia is allowed to see the data results. 

“The studies where they are letting me see where my cognition is and where my quality of life is, those have obviously been a direct benefit to me,” he said. “It’s given me directions as to where I need to be headed if I’m not heading in the right direction already.”

A study that involved Toia and his wife monitored their exercise and sleep habits over time through Apple watches, which the pair were required to wear throughout the duration of the study. The researchers also sent questionnaires surrounding the comfortability of wearing the watches. Toia and his wife were both able to keep the watches after the study concluded.

While sponsors of many in-person clinical trials pay participants or at least reimburse them for travel expenses, there is very little monetary incentive for online studies like the ones Toia has been involved in.

“There was one study that we were doing that is over,” he said. “Every quarter they were doing a survey, and at the end of the survey I would get an Amazon gift card. There was another one that sent me a check for $60 or something like that at the end of the study.”

Toia encourages his friends who are caregivers to enroll in online studies, as well. There are studies for all sorts of schedules, he noted, and of all different lengths of commitment. One study he was involved in lasted three months, while he’s been enrolled in another since 2016.

“To me, the whole reason behind it is to be an advocate, and to provide what I can to the Alzheimer’s community — and that’s why I encourage others to participate as well,” Toia said. “I actually have had some friends who have signed up for some of the studies.”

Toia hasn’t given up on the fundraising, either — In fact, this is the ninth year he is captain of his team T-Squared, which blew past its $4,000 fundraising goal this year to raise over $5,000, contributing to the Dayton, Ohio walk’s overall raise this year of more than a quarter million dollars toward Alzheimer’s awareness and research — and they plan to keep it going.

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Assessing and Addressing Family Caregivers’ Needs and Risks in Primary Care

Catherine riffin , phd, jennifer l wolff , phd, karl a pillemer , phd.

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Address correspondence to Catherine Riffin, Division of Geriatrics & Palliative Medicine, Weill Cornell Medicine, 420 East 70th Street, 3rd Floor, Room 317, New York, NY 10021. [email protected]

The first author (C.R.) affirms that all significant contributors to this work are named as authors.

Author Contributions: Riffin: study concept and design; data collection and analysis; drafting and preparing the manuscript. Wolff: study supervision; interpretation of data; editing of the manuscript. Pillemer: study supervision; interpretation of data; editing of the manuscript. All authors: revision of manuscript for important intellectual content.

Issue date 2021 Feb.

OBJECTIVES:

To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers’ needs and risks in primary care.

Cross-sectional, national mail-based survey.

American Medical Association Masterfile database.

PARTICIPANTS:

U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).

MEASUREMENTS:

Approaches to assessing and addressing family caregivers’ needs and risks; barriers and facilitators to conducting caregiver assessments.

Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers’ needs and risks were common and encompassed a range of issues, most frequently caregivers’ management of patients’ safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient’s living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers’ needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.

CONCLUSIONS:

Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers’ needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice

Keywords: caregiving, primary care, screening

INTRODUCTION

More than 90% of older adults who receive assistance in the community rely on help from a family member or other unpaid caregiver, either alone or in combination with paid care. 1 Family caregivers not only provide the majority of disability-related assistance to older adults, 2 they also assist with health management activities, such as arranging care, administering medications, and attending medical appointments. 3 – 6 Across numerous studies, effective caregiver assistance has been linked with positive outcomes for older adults, including better adherence to treatment plans and improved physical functioning. 7 – 9 However, caregivers receive inadequate preparation for the tasks they must assume. 10 They report high levels of stress 11 and are at risk for physical illness, depression and anxiety, and sleep disturbance. 12 – 15

On the basis of such evidence, research and clinical practice guidelines recommend that primary care clinicians assess the needs of family caregivers and suggest appropriate referrals for support. 11 , 16 The extent to which these guidelines are implemented in practice is unclear due to limited empirical data; however, emerging evidence suggests limited uptake. National surveys of family caregivers find that nearly half of respondents are never asked by health care providers whether they need help managing older adults’ care 17 and less than 1 in 5 are asked what they need to take care of themselves. 18 Quantitative data on primary care physicians’ approaches to identifying caregivers’ needs do not exist, but qualitative research and case reports suggest heterogeneity in existing practice patterns. 19 , 20 A more complete understanding of physicians’ experiences with assessing and addressing caregivers’ needs is needed to inform the advancement of primary care delivery models that acknowledge the broader social context in which individuals manage their health 21 , 22 and payment reforms that are poised to appropriately encourage explicit inclusion, assessment, and support of caregivers. 23

To our knowledge, this is the first study to characterize current practices, barriers, and facilitators to family caregiver assessment in a national random sample of U.S. primary care physicians. The study was undertaken to examine both formal (use of standardized instruments) and informal approaches (unstructured discussions) to assess the needs and risks of caregivers of persons with and without dementia, acknowledging the unique challenges and disproportionate impact of caring for a person with cognitive impairment, 24 , 25 as well as commonly used resources and referrals. The study also identifies structural barriers and attitudes that may impede uptake of caregiver assessment and potential facilitators for future integration.

The study sought to comparatively evaluate practice patterns of geriatricians and general internists, recognizing potential variability in training and experience with family caregivers. We hypothesize that geriatricians may be more attuned to the needs of family caregivers, especially those caring for persons with age-related diseases such as dementia, given specialty-specific education and increased prevalence of family accompaniment among older patients. 26 Although internists’ long-term relationships with patients may afford personal investment in and knowledge of the family’s circumstances, time pressure may preclude routine discussion of caregiver issues. 27 – 29

We conducted a mail-based, cross-sectional survey of a national random sample of primary care physicians in the United States from March 2019 to November 2020. The survey was distributed via first class postal mail with an option to complete the survey online. A $25 gift card was included in the survey packet as an unconditional incentive. Follow-up phone calls were made to nonresponders 2 weeks after the initial mailing to remind them to complete and return the survey. These strategies that have been shown to improve response rates among health care providers participating in survey research. 30 The study protocol was approved by the Weill Cornell Medicine Institutional Review Board as an exempt study.

Study Sample

The survey was mailed to a total of 500 primary care physicians (250 internal medicine physicians; 250 geriatricians) randomly selected from the American Medical Association (AMA) Masterfile. The AMA Masterfile includes nearly all physicians in the United States and is not limited to members of the AMA; all physicians are coded by primary medical specialty and board certification. The sampling frame for this study included physicians whose medical specialty designation was Internal Medicine with or without board certification in Geriatrics. Physicians were eligible to participate if they had been working in a primary care setting for at least 1 year beyond training. They were ineligible if they were not treating any older adults (age 65+) or were working abroad or for any of the armed forces.

Survey Instrument

The survey instrument ( Supplementary Appendix S1 ) was designed to cover three domains, chosen on the basis of prior literature and important themes that emerged from in-depth interviews with primary care clinicians, patients, and caregivers: 19 (1) physicians’ self-reported practices for identifying and addressing family caregivers’ needs, (2) perceived and anticipated barriers and facilitators to identifying and addressing caregivers’ needs, and (3) practice and demographic characteristics.

The instrument was iteratively revised and pilot-tested prior to administration to the target sample. A preliminary version was circulated to local primary care clinicians a weekly staff meetings and to researchers (gerontologists health services researchers, psychometricians) who were asked to provide feedback on the content and relative importance of individual items. Revisions were made to improve the overall organization and format, clarify ques tion wording, and reduce the total number of items to decrease time demands on participants. To verify the time commitment and appropriateness of individual items, an electronic version of the survey was distributed to profes sional organizations (e.g., American Geriatrics Society Gerontological Society of America) via online list-servs One hundred primary care providers responded; a timestamp was used to verify the average completion time.

Practices for Assessing and Addressing Caregiver Needs

To evaluate physicians’ formal assessment practices, participants were first asked whether their practice had a standardized procedure for assessing caregivers’ needs and whether they personally conducted a caregiver assessment using a standardized instrument in the past year. They were subsequently asked about the frequency of conducting formal assessments with caregivers of persons with and without dementia, with response choices ranging from “almost never (≤25% of visits)” to “almost always (≥75% of visits).”

To evaluate informal assessment practices, participants were first asked whether they had a conversation with caregivers of persons with versus without dementia about their needs and risks in the past year. They were subsequently asked about the frequency of these conversations, with response options ranging from “almost never (≤25% of visits)” to “almost always (≥75% of visits).”

Additional questions asked participants how often they discussed each of eight caregiver needs or risks, selected on the basis of consensus recommendations. 31 , 32 These items included caregiver (1) burnout or stress, (2) ability to provide assistance, (3) willingness to provide assistance, (4) physical health, (5) mental health, (6) need for services or supports, (7) management of patient safety, and (8) role as health care proxy. Response options ranged from “almost never (≤25% of visits)” to “almost always (≥75% of visits).”

Based on previous reports, 11 , 32 , 33 respondents were asked about the types of resources and referrals they provided to caregivers, including referral to medical services, community-based supports, academic-affiliated programs, and other resources (e.g., web-based materials).

Barriers and Facilitators

Respondents were provided with a list of common barriers to assessing caregivers’ needs derived from prior research 11 , 19 and consensus reports, 32 , 33 including organization- and practice-level challenges (e.g., HIPAA regulations, time constraints) as well as personal attitudes and beliefs (e.g., concerns about personal liability). Respondents were also asked to rate the helpfulness of several facilitators to addressing caregiver issues in the future (5-point scale), including referral-related facilitators (easier referral mechanisms), practice-related facilitators (colocation of case managers or mental health specialists), and training-related needs. Physicians were categorized according to those who rated each item as “very helpful” or “helpful” versus those who endorsed any other category.

Demographic and Practice Characteristics

Respondents provided information on their age, gender, race and ethnicity, number of years practicing, number of hours per week spent seeing outpatients, proportion of older adults (aged 65+) in their patient panels, proportion of older adults with and without dementia who are accompanied by a family caregiver to their primary care appointments, and proportion of their patient panel receiving Medicaid or Medicare. They also reported their practice type (private practice, academic affiliate, community health center, other), practice location (urban, suburban, rural), and state (categorized into U.S. Census Bureau defined regions). Provider specialty (geriatrics, internal medicine) was obtained from the AMA Masterfile.

Analytic Plan

Descriptive statistics were computed to summarize the demographic and practice characteristics of the full sample. Group differences in demographic and practice characteristics, current practices for assessing and addressing caregiver needs, and perceived barriers and facilitators were examined using chi-square and Fisher exact tests for categorical variables and t -tests for continuous variables. Two-tailed P -values less than .05 were considered statistically significant. The extent and nature of missing data was examined. As item nonresponse was low, we provide estimates for participants who responded. Statistical analyses were conducted using SPSS Version 23.0 and SAS Version 9.4.

Of the 500 physicians surveyed, 26 were ineligible because they had not worked in primary care for at least 1 year (n = 6), were not treating older adults (aged 65+) (n = 10), or were working abroad or for the armed forces (n = 10). Of the 474 eligible physicians, 106 completed the survey (22% overall response rate), of whom 44 were internists (19% response rate) and 62 were geriatricians (26% response rate). Demographic characteristics of respondents relative to the broader population of AMA primary care physicians were generally similar, although participants were slightly younger ( Supplementary Table S1 ).

Internists and geriatricians did not vary significantly with respect to demographic characteristics. They were approximately 58 years of age, most were men (57.5%), and three quarters were White (75.0%) ( Table 1 ). On average, respondents had been in practice for 26 years and spent 29 hours per week seeing outpatients. Geriatricians reported a larger proportion of older adults in their patient panels than internists ( P < .001); they also reported a larger proportion of patients on Medicaid or Medicare ( P < .001). On average, respondents estimated that 63.6% of older adults with dementia and 24.9% of older adults without dementia attended office visits with a family caregiver.

Description of Survey Respondents

Approximately half of all respondents worked in private practice (53.8%). The rest practiced at academic-affiliates (17.0%), community health centers (7.5%), or other settings (0.9%). Most physicians practiced in suburban (44.3%) or urban (38.7%) locations; a minority (17.0%) practiced in rural areas. There was a relatively even distribution across U.S. regions: 32.7% in the Northeast, 24.8% in the Midwest, 20.8% in the South, and 21.8% in the West.

Approaches to Assessing Caregivers’ Needs

A small minority of physicians reported that their practice had a standardized procedure for assessing caregivers’ needs (7.5%) and few had personally conducted a formal caregiver assessment in the last year (10.5%) ( Table 2 ). With regard to frequency, a minority of respondents routinely (in at least 75% of visits) conducted formal assessments with dementia caregivers (10.9%) and non-dementia caregivers (8.0%). No significant differences were observed between physician groups with regard to formal assessment practices.

Formal and Informal Approaches to Assessing Caregiver Needs

Formal approaches refer to the use of a standardized instrument to evaluate caregiver needs and risks. Participants were first asked whether they had personally conducted a formal caregiver assessment within the past year and subsequently asked about the frequency of performing such an assessment.

Proportion of respondents who endorse performing formal caregiver assessment in ≥75% of visits.

Informal approaches refer to unstructured, informal conversations with caregivers about their needs and risks. Participants were first asked whether an informal conversation about caregivers’ needs/risks in the past year and subsequently about the frequency of these discussions.

Proportion of respondents who endorse having informal conversations in ≥75% of visits.

Most physicians assessed caregivers’ needs and risks informally ( Table 2 ). Internists and geriatricians were equally likely to report having had informal discussions with dementia caregivers about his or her needs and risks in the past year (88.6% vs 96.7%; P = .13), but geriatricians were more likely to have had an informal conversation with a non-dementia caregiver (88.5% vs 69.8%; P < .05). With regard to frequency, approximately one third of respondents routinely (in at least 75% of visits) had informal conversations with dementia caregivers (33.7%); whereas 15.5% routinely (in at least 75% of visits) had such discussions with non-dementia caregivers.

Across all respondents, range of approximately 20% to 40% routinely discussed each of eight caregiver needs and risks ( Table 3 ). The most commonly discussed topics were caregivers’ management of patients’ safety, ability to provide assistance, and need for services or supports, with approximately 40% of respondents routinely discussing each of these issues. The most infrequently discussed topics were caregivers’ physical (20.2%) and mental health (21.2%); approximately one third of respondents almost never discussed these issues.

Caregiver Needs and Risks Discussed Informally

Note: “Almost never” defined as discussing issue in ≤25% of visits. “Sometimes” defined as discussing issue in 25% to 75% of visits. “Routinely” defined as discussing issue in ≥75% of visits.

Refers to health care agent for advance directives.

Use of Resources and Referrals

The majority of physicians endorsed referring the patient for additional services (69.8%), assessing the appropriateness of the patient’s living situation (67.9%), and referring the caregiver to a community agency (63.2%) ( Figure 1 ). Compared with internists, geriatricians were significantly more likely to refer caregivers to respite programs (51.6% vs 31.8%; P < .05) or provide them with web-based resources or educational materials (51.6% vs 20.5%; P < .001). A large proportion of respondents reported referring caregivers to local support groups (42.5%), whereas much smaller proportions made referrals to other health care professionals (18.9% at the physician’s practice; 13.2% at a different practice) and to academic-affiliated support programs (15.1%). A small number of respondents reported using no resources or services (11.3%).

Primary care clinicians’ use of resources and referrals in addressing caregiver needs and risks.

Lack of time was the most frequently reported barrier to assessing caregivers’ needs, endorsed by 81.1% of respondents ( Table 4 ). Inadequate reimbursement (39.6%) and inability to have private discussions with caregivers (33.0%) were concerns among one third of participants. Approximately one quarter of physicians endorsed referral-related barriers, including lack of access to (27.4%) and uncertainty about referral options (22.6%). Similar proportions reported uncertainty about assessing caregiver issues (24.5%), unwillingness of caregivers to discuss their needs (22.6%), and concerns about privacy/HIPAA regulations (20.8%). Few physicians reported discomfort raising sensitive topics with caregivers (8.5%) or concerns about personal liability (7.5%). Almost no respondents reported that assessing caregiver needs was the responsibility of other health care providers (2.8%) or was irrelevant to the clinical care of their patients (1.9%).

Barriers and Facilitators to Identifying and Addressing Caregiver Needs and Risks

Note: Multiple responses allowed.

Proportion of respondents endorsing each facilitator as “helpful” or “very helpful.”

The most commonly endorsed facilitators were better referral options (71.0%) and easier referral mechanisms (69.7%). Practice-related facilitators, including co-location of behavioral or mental health specialists (67.0%) and co-location of care managers or social workers (65.0%) were endorsed by approximately two thirds of respondents, as was training in how to address caregiver issues (64.4%). Half of respondents indicated that co-location of the caregiver’s primary care physician would be helpful in addressing caregiver issues. Barriers and facilitators did not differ significantly by physician group.

In this national random sample, few primary care physicians reported using standardized caregiver assessment tools but most engaged in informal discussions about caregivers’ needs and risks. Only 7.5% of the physicians surveyed worked in practices that had a standardized procedure for assessing caregiver needs. Multiple barriers were found that inhibited assessment of caregivers’ needs, most prominently lack of time and inadequate reimbursement. Better referral options and easier referral mechanisms were the most commonly endorsed facilitators to assessing and addressing caregivers’ needs. Contrary to expectations, practice patterns, barriers, and facilitators to caregiver assessment were largely consistent between geriatricians and internists.

Results from this study reflect the growing awareness and interest in supporting family caregivers by the medical community. Whereas previous reports described family caregivers as an “invisible” workforce that is marginalized in medical encounters, 34 recent surveys indicate that primary care clinicians believe that caregivers play an important role in patient care 35 and feel that it is their responsibility to respond to caregiver concerns. 36 Findings from the present study offer evidence for how such beliefs are put into practice. The vast majority of geriatricians and internists reported having at least one conversation with family caregivers about their needs and risks in the past year. Virtually no respondents reported that caregiver assessment was irrelevant to the clinical care of their patients.

Despite the advent of care delivery models that encourage family involvement in health care processes, 37 , 38 there is a lack of consensus regarding the elements to be included in caregiver assessment and the frequency with which an assessment should be conducted. In this study, 40% of respondents regularly inquired about caregivers’ ability to provide assistance and need for services or supports, but nearly 20% almost never asked about these issues. Surveys of family caregivers indicate that large proportions are never asked by health care providers about their abilities and preferences, 39 whether they need help managing older adults’ care, 17 or what they need to take care of themselves. 18 The vast majority report that they do not receive role-related training. 10 Future research using real-time audio-recordings of the medical encounter may help to shed light on the disconnect between caregivers’ and clinicians’ perspectives on the topics discussed and training provided. As family caregivers’ circumstances and needs often fluctuate with patients’ cognitive and functional status, 40 standardized protocols that involve reassessment at regular intervals merit consideration and careful planning to ensure optimal integration and sustainability.

Study findings underscore the lack of translation of caregiver assessment tools from research to practice. Numerous psychometrically validated assessment instruments have undergone rigorous development and testing in research contexts, 32 but many of these instruments are lengthy and therefore not feasible for administration in primary care. 41 Indeed, only 1 in 10 primary care physicians in this study reported using a standardized instrument to assess family caregivers’ needs. Lack of time was the most commonly endorsed barrier to caregiver assessment among both geriatricians and internists, a finding that is consistent with prior qualitative research and consensus reports. 19 , 31

At present, no guidelines exist for how caregiver assessments should be incorporated into primary care delivery. Of course, future integration will require tailoring to individual practices given variability in organizational structure, resources, access to local caregiver resources, and potential for embedding caregiver data within health technology and information systems. Findings from this study and others 10 , 19 strongly suggest the need for evidence-based guidelines that can be applied across structural and administrative mechanisms in primary care, especially given new quality measures that emphasize outcomes related to patient and caregiver experiences. 42

The study points to several new directions for program design and evaluation that may lead to better integration of caregiver assessment into care planning and execution. First, the primary care environment makes advisable embedding short assessments within existing practice workflows. 19 , 34 One approach that warrants consideration is the development of a brief screen, consisting of questions that ascertain basic information about caregivers’ risks and need for services, that is integrated into health information technology (electronic health record, patient portal). This approach may be particularly useful given increasing demands for telemedicine and remote access to health care. 43

Second, physicians’ endorsement of referral-related facilitators, including easier referral mechanisms and better referral options underscores the need for assessment protocols that incorporate standardized procedures for connecting caregivers with services and supports that are tailored to their needs. Harnessing health information technology to record and track referrals will be critical to ensuring longitudinal support by facilitating linkages between clinical practice and community-based services. 44 Third, to promote workforce capacity, the design of caregiver assessment protocols should be accompanied by brief and effective training for clinicians, as two-thirds of geriatricians and internists reported that training would help them to incorporate caregiver assessment into practice. Continuing Medical Education credits may help to encourage additional training in this area. Evidence-based guidelines will need to clearly articulate practice standards and requirements.

Fourth, reimbursement issues must be addressed. Potential opportunities include promoting reimbursement through the Centers for Medicare & Medicaid Cognitive Assessment and Care Planning code for persons with dementia, which includes caregiver assessment as a service element, 23 or through annual Medicare visits, which include a health risk assessment for beneficiaries who are family caregivers. Consideration should also be given to the development of payment mechanisms that can be applied across health systems to encourage providers’ interactions with caregivers even when the patient is not present, including in-person consultations, telemedicine visits, and correspondence by email and phone.

Finally, there is likely a role for interdisciplinary teams to act on the assessment when serious problems are identified, as evidenced by the finding that the majority of respondents endorsed co-location of behavioral and mental health as a potential facilitator. Pragmatic trials that draw on implementation science frameworks will need to evaluate cost-effectiveness, patient perceived quality of care, and caregiver preparedness.

This study has several limitations. Although our response rate was achieved using best practices for engaging health care providers in survey research and is comparable to other physician surveys using the AMA Masterfile, 45 – 47 generalizability of our study findings may be limited. Findings may also be subject to recall, social desirability, and nonresponse biases; for example, physicians with greater familiar or engagement with caregiver may have been more likely to participate. These biases may have resulted in conservative estimates regarding the use of assessment instruments and informal discussions as respondents are likely to be more aware of caregiver concerns. As such, caregiver assessment may actually be less frequent than was observed in this study. We also note that our study sample only included physicians and results may not extend to other primary care professionals. Finally, future research will need to examine clinicians’ use of resources and referrals by the patient’s dementia status as these questions did not distinguish caregivers of older persons with and without dementia.

CONCLUSIONS

Issues of family caregiving will become more prominent as the baby boom generation enters into their later years 48 with growing numbers of older adults who rely on family caregivers at medical visits. As in other contexts, such as pediatrics 49 and state Medicaid programs, 50 meaningful and systematic assessment is a clear first step to identify needed services, incorporating family members into planning care, and ultimately improving patient outcomes.

Supplementary Material

Supplementary Appendix S1 Survey instrument.

Supplementary Table S1: Characteristics of Survey Respondents Compared to AMA Primary Care Physicians.

ACKNOWLEDGEMENTS

Financial Disclosure: This project was supported by grants K01AG061275 and UL1TR002384 from the National Institutes of Health.

Sponsor’s Role: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

We thank Julianna Maisano and Sylvia Lee for their assistance with survey distribution. We thank the National Coalition on Care Coordination (N3C) for endorsing the survey.

Conflict of Interest: The authors have no conflicts of interest to report.

SUPPORTING INFORMATION

Additional Supporting Information may be found in the online version of this article.

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Development of a National Caregiver Health Survey for Hematopoietic Stem Cell Transplant: Qualitative Study of Cognitive Interviews and Verbal Probing

Jacob kedroske, sarah koblick , md, dima chaar , mhi, amanda mazzoli , bsc, maureen o'brien , ba, msw, lilian yahng , ba, rebecca vue, grant chappell , bsc, ji youn shin , bfa, mdes, david a hanauer , msc, md, sung won choi , msc, md.

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Corresponding Author: Sung Won Choi [email protected]

Corresponding author.

Received 2019 Nov 15; Revision requested 2019 Dec 9; Revised 2019 Dec 12; Accepted 2019 Dec 16; Collection date 2020 Jan.

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on http://formative.jmir.org , as well as this copyright and license information must be included.

Roadmap 1.0 is a mobile health app that was previously developed for caregivers of patients who have undergone hematopoietic stem cell transplantation (HSCT). Formative research targeted toward its end users (caregivers) can help inform app design and development, allowing additional components to be incorporated into the app, which can then be tested in a future randomized controlled trial.

This study aimed to create a methodologically rigorous national survey that would help inform the development of Roadmap 2.0.

We conducted a prospective, qualitative research study that took place between November 18, 2018, and February 7, 2019, in a blood and marrow transplant unit within a large academic medical institution in the midwestern part of the United States. Cognitive interviews, including think-aloud and verbal probing techniques, were conducted in 10 adult caregivers (≥18 years) of patients who had undergone HSCT.

Most participants were female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), employed at least part time (6/10, 60%), caregivers of adult patients (7/10, 70%), and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). All but one interview was audio-recorded, with permission. Overall, participants were engaged in the cognitive interview process of the draft survey, which included 7 topics. The interviews highlighted areas wherein survey items could be further refined, such as offering more response choices (eg, “NA”) or clarifying the type of transplant (eg, autologous or allogeneic) or context of transplant care (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, and outpatient). Apart from these findings, the items in demographics, caregiving experiences, technology, positive activities, and mood were generally interpreted as intended. On the basis of the transcript data and field notes by the interviewer, items within self-efficacy (Caregiver Self-Efficacy Scale) and coping (Brief Coping Orientation to Problems Experienced inventory) questionnaires generated more confusion among interviewer and participants, reflecting difficulties in interpreting the meaning of some survey items.

Conclusions

This study incorporated the four cognitive aspects of survey methodology that describe the question-answering process—(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding—by using the think-aloud and probing techniques in cognitive interviews. We conclude that this methodologically rigorous process informed revisions and improved our final questionnaire design.

International Registered Report Identifier (IRRID)

RR2-10.2196/resprot.49188

Keywords: hematopoietic stem cell transplantation, caregivers, mobile applications, qualitative research

Introduction

Millions of individuals depend on family caregivers to manage their care [ 1 ]. Although family caregivers are a central part of health care [ 2 ], they often are invisible in our health care system, so much so that they are sometimes referred to as “hidden patients” [ 3 ]. The economic value of unpaid hours of care by family caregivers was estimated at US $470 billion in 2013, and their contributions continue to intensify [ 4 ]. Indeed, with the aging population in the United States and the rising need for caregivers, efforts to foster caregiver health and well-being are essential for sustaining long-term care [ 5 ]. Caregivers assist patients with a wide range of activities, including managing complex medical tasks, organizing care plans, and advocating on their behalf [ 3 ]. These demands are of a time- and labor-intensive nature, and they place caregivers at high risk for injury and adverse events [ 3 , 6 - 8 ]. Addressing the needs of at-risk caregivers is an urgent public health priority [ 1 ].

Caregiver burden is defined as the “negative reaction to the impact of providing care on the caregiver’s social, occupational, and personal roles” [ 9 ]. Much focus has been placed on the wide range of negative implications associated with caregiving [ 10 ] (eg, depression and anxiety) [ 11 ]. Despite this, most caregivers have recognized the benefits of caregiving [ 12 , 13 ]. The imbalance of focusing primarily on negative aspects may limit our ability to develop new assessment and intervention methods [ 14 ]. Thus, a “corrective focus” is needed in caregiving research to expand our knowledge on the positive aspects of caregiving [ 15 , 16 ]. Research on self-management suggests that self-efficacy, a positive aspect, can promote caregiver health, well-being, and positive health behaviors (ie, improved sleep and physical activity) [ 17 , 18 ].

The positive aspects of caregiving may explain how caregivers can positively engage patients in self-care activities [ 19 ]. Caregivers with better self-efficacy and well-being (ie, health-related quality of life) may positively affect patients’ health outcomes [ 20 - 22 ]. Simple strategies aimed at enhancing positive thoughts, emotions, and behaviors have been shown to be effective and highly scalable [ 23 - 25 ]. Positive activity interventions, such as daily positive reflection, using gratitude journals, and conducting acts of kindness, have been used in the management of heart disease, cancer, diabetes, and chronic pain [ 26 - 29 ].

Blood and marrow transplant (BMT), commonly referred to as hematopoietic stem cell transplant (HSCT), is an intense but potentially curative therapy for a number of life-threatening blood diseases [ 30 ]. Given the high risk associated with BMT, a dedicated caregiver is necessary and expected for at least the first 100 days after the transplant [ 31 ]. However, HSCT caregivers are often unprepared for this role; it is not surprising that HSCT caregivers experience significant levels of anxiety and distress, especially during the peritransplant period [ 32 , 33 ]. Psychoeducational, skills training, and therapeutic counseling interventions have been shown to benefit caregiver health and well-being [ 34 ]. However, major barriers in translating successful interventions to clinical practice have included (1) limited understanding of the mechanism of action of an intervention and the (2) need for expert trainers, intensive training, and monitoring [ 3 ]. Interventions that are mechanism focused, low cost, and sustainable are needed [ 35 ].

We recently developed BMT Roadmap (Roadmap 1.0) as a mobile health (mHealth) app to provide patient-specific information, education, and skill-building exercises for caregivers to use during their inpatient stay. The modular components included patient-specific disease characteristics (eg, infectious disease markers, blood type, donor characteristics, and conditioning chemotherapy regimen), laboratory studies (ie, results shown in real time), medications (ie, lists of medications grouped according to indication, eg, antibiotic or antiemetic), clinical trials (ie, easy-to-read description of clinical trials and copies of informed consents), and a health care provider directory (ie, photographs of nurses, physicians, social workers, pharmacists, and nutritionists) in a yearbook style. To date, more than 100 HSCT caregivers have enrolled in institutional review board–approved studies to assess the feasibility of implementing Roadmap 1.0. Major themes that emerged from qualitative interviews conducted with users of Roadmap 1.0 included the following: (1) Roadmap 1.0’s usefulness, ease of use, and likeability; (2) positive aspects of caregiving (ie, benefits of providing care); and (3) desire to expand Roadmap 1.0 to the outpatient setting, specifically targeting “caregiver-specific resources” and “positive activities” components [ 36 - 40 ].

Thus, in addition to the qualitative research findings from our single institution, we sought to develop a national caregiver health survey that could be broadly distributed to a diverse sample of HSCT caregivers. The goal of the survey was to examine design considerations for an outpatient version of Roadmap 1.0 (will be referred to as Roadmap 2.0 henceforth). Specifically, our intention was to develop a useful and understandable survey aimed at HSCT caregivers as the target audience. Thus, the aim of this study was to create a methodologically rigorous, broadly national survey that would help further inform the development of the app, in addition to contributing to substantive empirical research on caregivers of patients who have undergone HSCT. To do this, we conducted cognitive interviews to assess each survey item and adjusted, iterated, and rewrote the survey thereafter, which we report herein.

Survey Development Process

This work is part of a multiphase project ( Figure 1 ) that will develop and test Roadmap 2.0 in a randomized controlled trial.

Study phases, methods, and references to published works. HCT: hematopoietic stem cell transplant.

Development of the Caregiver Health Survey was based on research derived from phases 1 to 6 [ 36 - 38 , 40 - 45 ]. The 6 sequential phases led to the development of a draft survey that included (1) demographics, (2) general caregiving duties and life experiences after transplant, (3) use of mobile technology (eg, mHealth apps and wearable sensors), (4) personal enrichment through positive psychology–based activities, (5) mood, (6) confidence in providing care for a loved one (patient) and self-care (self-efficacy), and (7) ability to handle stress and use coping strategies. For items 5 to 7, we incorporated the Patient Health Questionnaire [ 46 ], Caregiver Self-Efficacy Scale (CaSES) [ 47 ], and Brief Coping Orientation to Problems Experienced (COPE) inventory [ 48 ], with permission. The psychometric properties of these instruments are provided in Multimedia Appendix 1 .

To ensure that survey items were clearly worded and provided contextualized understanding relevant to HSCT caregiving experiences, we conducted cognitive interviews. In short, the cognitive interview is based on the conceptual frameworks and methods in cognitive and social psychology [ 49 ]. As it is an important method used in survey development, particularly under the cognitive aspects of survey methodology (CASM), this approach was used in our survey design to ensure the quality and interpretability of question items [ 50 ]. We evaluated interviews using the 4 CASM steps that describe the question-answering process: (1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding [ 51 ].

During cognitive interviews, the interviewer read aloud each item and asked the participant to express any questions or concerns regarding the item. The interviewer used both think-aloud interview and verbal probing techniques. Think-aloud interviewing provided an opportunity for open-ended answers without interviewer direction. Verbal probing was used after the participant answered the think-aloud interview to provide further insight into the response [ 49 - 51 ]. In addition, the interviewer recorded field notes or observations from each interview session and also documented handwritten notes after reading each item out loud to the participant.

Study Recruitment and Informed Consent

The study was approved by the institutional review board (HUM00115569). Cognitive interviews were conducted with family caregivers of patients of the BMT unit of a large academic medical center in the midwestern part of the United States. Eligibility conditions for study participation were that the subject should be (1) the primary family caregiver who had already experienced the transplant procedure with their loved one (patient) and was in the posttransplant phase of care, (2) aged ≥18 years, and (3) comfortable with reading and speaking English. Participants were recruited through referrals from the clinical team (eg, physician or advanced practitioner). The clinical team recruited caregivers who met eligibility criteria from the inpatient and outpatient settings. Only one caregiver declined participation; another caregiver signed the informed consent but was not available on the interview day. Thus, a total of 10 caregivers signed the informed consent and participated in the study.

The cognitive interviews took place between November 19, 2018, and February 7, 2019. Each interview session was approximately 30 to 50 mins in length and was audio-recorded, with permission, and subsequently professionally transcribed (Babbletype LLC). One caregiver participant refused audio-recording. Participants were compensated with a $10 gift card for their participation. A trained project manager with a background in survey methodology (Survey Research Operations, Survey Research Center, Institute of Social Research) moderated the cognitive interviews in a private hospital conference room. The interviewer was not affiliated with the BMT program. Recruitment ended once it was determined that no new data were being identified that informed the content of the survey items. Saturation was defined as a criterion for discontinuing data collection and/or analysis [ 52 ].

Data Analysis

The analysis approach included 3 steps. First, two experts in public health and survey methodology (Survey Research Operations, Survey Research Center, Institute of Social Research), neither affiliated with the BMT program, read the audio-recorded transcripts and the observation and summary notes of each survey item independently. They generated their own notes of each survey item, met together to compare notes, and provided suggested edits (ie, changes to survey items) to the research team. Second, the research team reviewed the results, validated the interpretations and conclusions in a peer-debriefing session, and developed a revised draft survey. Third, a survey methodologist at an external survey research organization (Center for Survey Research) reviewed all of the observation and summary notes and draft survey and provided additional edits of the draft survey. All changes to survey items that led to the final survey were made in collaboration with the lead study investigator.

Participant Demographics

As shown in Table 1 , the median age of the study participants was 57 years (range: 35-70 years). Most participants were recruited from the inpatient setting (7/10, 70%), female (9/10, 90%), white (9/10, 90%), married (9/10, 90%), caregivers of adult patients who had undergone HSCT (7/10, 70%), and employed at least part time (6/10, 60%) and had some college education (9/10, 90%) and an annual household income of $60,000 or higher (6/10, 60%). Detailed demographics are provided in Multimedia Appendix 2 . Overall, participants were engaged in the cognitive interview process. The findings are described below per survey topic. A list of questionnaire items from which the quotes were derived is provided in Multimedia Appendix 3 .

Demographics of the study participants (N=10).

Survey Topic

Demographics.

Most caregiver participants were able to respond to demographic items in the survey with ease. A minor finding suggested to include additional response options:

Interviewer: Here’s, “Other (please specify….).” I didn’t see, but still, daughter, that seems like it should have an answer choice.

Participant: Probably pretty common. Caregiver #06

A survey item asked, “How long ago did the patient receive an allogeneic transplant?” However, caregivers expressed that type of transplant could include autologous (eg, self) or allogeneic (eg, another related donor or another unrelated donor):

Interviewer: Who donated the stem cells for the patient’s transplant? Was it a related donor? An unrelated donor? Or do you know?

Participant: The patient themselves (this refers to autologous transplant). Caregiver #07

Caregiving Experiences

In this section, caregivers expressed that some of the items were not applicable to their caregiving experiences as they were caring for their loved ones (care recipients or patients) at different stages of the transplant. For example, questions about hours spent caregiving did not make sense for a caregiver whose patient was currently hospitalized, undergoing the transplant procedure (ie, care mostly provided by a nurse):

Participant: How long have I been providing care?

Interviewer: Mm-hmm (agreement).

Participant: Thirty-five years, but for this (transplant), a month. Almost, three weeks.

Interviewer: How many hours of caregiving have you provided per week for the patient?

Participant: I’ve probably been here (in the hospital) for 10 hours a day, so 70. Caregiver #08

Items in this section were considered straightforward and easy to understand by participants. For example, most of the items were quantitative (ie, “How many apps do you use daily?”), and there were no major sources of confusion identified in this section. However, some of the items allowed for only a “Yes” or “No” response, but caregivers preferred a neutral response and suggested a “maybe,” “not applicable (NA),” or “I am not sure” option:

Interviewer: That’s okay, it’s not an answer choice, but I can put that was your first response because that’s not a choice. Which is closer, yes or no, to what you would do?

Participant: I would use it sometimes, so yes. Caregiver #03

Interviewer: If a caregiver app existed, would you want the app to connect with other caregivers undergoing similar experiences in the transplant experience?

Participant: Sure...I wouldn’t mind texting back and forth. The one-on-one face time I wouldn't necessarily want to do.

Interviewer: Do you feel like maybe you would need a different answer choice like yes, no, or maybe? Participant: Maybe. Caregiver #10

Personal Enrichment Through Positive Activity Exercises

In this section, participants were asked to rate positive psychology activities based on their usefulness and how likely they were to participate in them. Participants were asked to provide a rating for each activity by indicating a response on a scale from 1 (extremely unlikely) to 5 (extremely likely). All of the participants were able to clearly articulate a score. This section was considered straightforward:

Interviewer: Exercise one. I’ll just read through the exercise, and you can tell me on a scale of one to five, how willing you would be able to do the exercise. In exercise one, you would be asked to spend a few minutes each day savoring at least two everyday experiences such as morning coffee, the warmth of the sunshine, a call from a friend. You are to be mindful, very aware of the moment while savoring the experience and using all of your senses, sight, hearing, taste, and touch to solidify the memory. Please rate this activity on a scale of one to five, one, extremely unlikely, two, moderately unlikely, three, neither unlikely or likely, four, moderately likely, five, extremely likely.

Participant: Four.

Interviewer: Four?

Participant: Yes. Caregiver #03

Interviewer: Exercise two. In this activity, every evening you would think about the things that made you happy that day. You would write down one of these moments on a piece of paper, fold up this piece of paper and drop it into a piggy bank. We would provide the piggy bank. At the end of 30 days, you would close your account, which means you would open the piggy bank and read and savor all of the deposited happy memories. On a scale of one to five, extremely unlikely, moderately unlikely?

Participant: Probably one.

Interviewer: Extremely unlikely. Caregiver #04

This section included 4 items, which were previously developed in a US sample of 2149 patients from 15 primary care sites [ 46 ]. Overall, the items were considered straightforward and easy to follow. Participants seemed to have little to no difficulty following this section’s directions, and they did not express significant concerns about the intent of the items. However, several participants commented that the 4 response options (eg, “not at all,” “several days,” “more than half the days,” and “nearly every day”) were not adequate (ie, a fifth option, such as “every day,” should be included). A participant declined to provide a response because she did not feel comfortable answering some of the items in this section to the interviewer:

Participant: I’m pretty private. I know that seems weird because I’m doing this study.

Interviewer: This is private. Caregiver #01

Confidence in Providing Care to a Loved One (Patient) and Self-Care

The CaSES questionnaire has been previously studied in caregivers of patients with advanced cancer [ 47 ]. Participants commented that some of the items in this section were framed with assumptions about the caregivers’ experiences (ie, caregiver of adult vs pediatric patient). Some of the experiences did not apply to all of the participants, depending on the transplant phase (eg, pre-HSCT, during HSCT, or post-HSCT). Most of the caregivers needed clarification on the response options and alluded to needing an “NA” response option:

Interviewer: That’s helpful. Continue to provide care when you feel scared?

Participant: Yes, I can. It’s more about willing and able and definitely will do it, but we haven’t been. Interviewer: You haven’t been scared yet?

Participant: Not yet. Caregiver 06

Interviewer: How about angry? Continue to provide care when you feel angry?

Participant: That hasn’t happened. Caregiver #06

Ability to Handle Stress and Use Coping Strategies

Participants encountered the most difficulty in interpreting items in this section related to the Brief COPE questionnaire, which has been previously studied in family caregivers of women with advanced breast cancer [ 48 ]. Participants reported frustration in responding to questions, such as “I’ve been looking for something good in what is happening” or “I’ve been making fun of the situation,” as they appeared to be insensitive to their journey.

Again, similar to the self-efficacy items, when responding to the coping-related items, acknowledging the caregivers’ frame of reference was important (ie, defining whether the items refer to the pre-HSCT, during HSCT, or post-HSCT setting, or more generally, in the midst of a stressful event). Medical, personal (patient), and family goals also influenced how participants responded to certain items. For example, for some patients, the goal was to work toward more independence. For others, caregivers were instructed to provide as much help as possible to reduce patient suffering:

Interviewer: I’ve been taking action to try and make the situation better.

Participant: That’s the same thing. To me, that question implies a parent could have done something to make it better. It feels like a crappy question. It makes me feel bad like I should have done something differently or I should have taken action to make this better. In reality, parents don’t have control over this. Caregiver #02

Principal Findings

In this study, we report the findings of cognitive interviews conducted in caregivers of patients who had undergone HSCT that assessed each survey item. Following the 4 CASM steps that describe the question-answering process—(1) comprehension, (2) information retrieval, (3) judgment and decision making, and (4) responding and using the think-aloud and probing techniques—we found that this methodologically rigorous process informed revisions and improved our final questionnaire design. Indeed, evidence-based data have shown that pilot testing a survey is typically insufficient to ensure the quality and accuracy of the questionnaire [ 49 ].

Some of the participants identified confusion within certain sections of the survey that may have been missed with pilot testing alone. Interestingly, the sections that prompted the most concerns were the CaSES and Brief COPE items. For example, the wording of some of items created confusion for our participants, which may have been because of the context of care that is unique to HSCT (eg, pre-HSCT, during HSCT, post-HSCT, inpatient, outpatient, caregiver of an adult patient, or caregiver of a pediatric patient). Thus, this led to the following changes: (1) inclusion of more succinct and clear instructions in the introduction or preamble to each section; (2) incorporation of anchoring terms, such as “at the time of transplant”; and (3) inclusion of questionnaire items tailored to the HSCT population (ie, to better align the items to HSCT, we deleted some items that repeatedly raised concerns in the participants).

Importantly, the interviews revealed that the original set of items was not exhausted and highlighted areas wherein survey items could be further refined by (1) offering more response choices (eg, “NA”), (2) removing some negatively worded items, (3) including more items to make our points clear, (4) moving the order of some items so that it flowed more clearly within each topic, and (5) collapsing redundant items (eg, collapsing income brackets/categories). Thus, we found that during the course of this study, we were able to examine item interpretation and readability and adjust, refine, and rewrite items that would be understood correctly by future survey respondents. We also redesigned the formatting of certain sections by (1) creating a grid or matrix question format with x-axis that listed the item and y-axis that listed the response options, (2) developing a single-response or “radio-question” format, and (3) auto-populating or piping in the patient’s name from a previous response to further reduce the readability burden. Personal enrichment through positive activity exercises did not identify any potential problems that might lead to survey response error, and thus, no further changes were made to any of its items.

Comparison With Prior Work

Overall, we found that participants were willing to contribute to this type of project, specifically to help future caregivers who would undergo this process, which was consistent with our prior research [ 53 ]. Participants of this study were caregivers of both adult and pediatric patients who had undergone BMT. The cognitive interviews identified areas that helped us refine language to allow for interpretability regardless of caregiver type (eg, adult or pediatric). Prior HSCT survey reports have examined either adult or pediatric HSCT [ 54 , 55 ]. Thus, our findings offer a unique contribution to the literature.

Conducting cognitive interviews and using techniques such as think-aloud can help us to learn how participants interpret questionnaire items in their own words, thereby facilitating the development of an instrument that is discriminating, reliable, and valid. de Leeuw et al conducted 2 recent studies [ 56 , 57 ] using a rigorous methodological process that included cognitive interviews in the development of an instructional design evaluation survey. Our findings herein support the use of such rigorous processes in developing surveys that verify how participants are interpreting survey items and whether the survey format and response sets are understandable.

Strengths and Limitations

Major strengths of the study include the development of a refined survey through rigorous methodology that involved a trained interviewer, experts in qualitative data analysis through the lens of survey methodology (and not affiliated with the BMT study population), a research team with extensive knowledge in the BMT study population, and an external survey methodology research investigator (not affiliated with our institution). Not involving survey methodology experts in our study population helped remove biases in the interpretation of our findings.

On the basis of the review of the transcript data and field notes captured by the moderator, we found that the think-aloud technique was successful in capturing constructive feedback, particularly related to the self-efficacy and coping-related items. Participants freely shared that some items were not pertinent to them, insensitively phrased, or required more response options. Verbal probing revealed items that caused confusion (ie, the participant was stuck or paused for a long time, and the interviewer posed a clarifying question or comment to identify the confusion). Overall, the probes were not directive, and participants were able to verbalize their thoughts freely and openly. In the instances that participants refused to answer an item (ie, because of the insensitive nature of the survey item or privacy concerns), the moderator did not probe further. For example, a caregiver declined to answer the 4 psychological distress items because of privacy concerns. It is possible that survey quality will improve in the future with an anonymous, self-administered survey (ie, removing the interviewer).

Despite our extensive work to develop a survey that would be reliable and interpretable, we recognize the limitations of our work. First, participants who were engaged in this research participated in our research. All but one caregiver agreed to participate when approached by the clinical care team, which may reflect social desirability to please the health care providers. In addition, this could mean that our data were skewed by selective input of those engaged in research. Most participants were white, female, married, and highly educated. We recognize that caregiving experiences could be different based on race, gender, and other identities. Our study was also conducted in a single institution in a midwestern location in the United States. The location could change the needs of a community, and a single-institution study could have reflected the interpretation of individuals attending our center. Although cognitive interviews were conducted to improve questionnaire design and to inform revisions, it is likely that some individuals may still have difficulty interpreting some items as intended, which could lead to inaccurate responses or missing data, if left unanswered.

Nonetheless, findings from our cognitive interviews were invaluable in the refinement of our final Caregiver Health Survey. In general, interventions to support caregivers longitudinally across the trajectory of care are limited. Our larger research agenda aims to contribute to the intervention literature. We hope that the findings from our study, which highlight the importance of cognitive interviews, will be useful for research investigators designing surveys with caregivers in mind, especially surveys in support of developing health interventions. Furthermore, in-depth explorations of survey items by asking caregivers about their perceptions provided them with an important opportunity to include them as active partners in the care of their loved ones (patients). Sharing these data about caregivers’ views of survey items and what their thought processes are when responding to items may also facilitate future caregiving work.

Future Research

The main goal of this study was to create a survey that will inform the development of our future Roadmap 2.0 app and continue research on mHealth interventions. Data collected herein informed our national caregiver health survey, which was deployed nationally from May to June 2019 (data analyses are forthcoming). Although this investigator-initiated survey queried respondents on health behavior and use of mHealth apps generally to inform our Roadmap 2.0 app, once developed and tested, we anticipate using one of the many recent well-developed and well-validated surveys, such as the Health Information Technology Usability Evaluation Scale [ 58 ], mHealth App Usability Questionnaire [ 59 ], and/or the Mobile App Rating Scale [ 60 ], to assess the app’s usability.

Acknowledgments

This work was supported by an American Society of Hematology Bridge Grant and National Institutes of Health/National Heart, Lung, and Blood Institute grant (1R01HL146354) and the Edith S Briskin and Shirley K Schlafer Foundation (Sung Won Choi). The authors wish to thank caregivers who participated in this study.

Abbreviations

blood and marrow transplant

Caregiver Self-Efficacy Scale

Coping Orientation to Problems Experienced

hematopoietic stem cell transplant

mobile health

Psychometric properties of the Patient Health Questionnaire-4, Caregiver Self-Efficacy Scale, and Brief Coping Orientation to Problems Experienced inventory.

Detailed demographics of study participants.

List of questionnaire items from which the quotes were derived.

Authors' Contributions: JK, SK, DC, RV, GC, JS, and DH contributed to data curation, data analysis, and reviewing and editing of manuscript drafts. AM contributed to patient recruitment, data curation, and reviewing and editing of manuscript drafts. MO contributed to data collection, data curation, data analysis, data interpretation, visualization, and reviewing and editing of manuscript drafts. LY contributed to data analysis, data interpretation, visualization, and reviewing and editing of manuscript drafts. SC contributed to data curation, investigation, methodology, data analysis, resources, supervision, visualization, writing original draft, and reviewing and editing of manuscript drafts.

Conflicts of Interest: None declared.

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Research Registry

Professional research.

FCA’s Research Registry offers a professional listing of publically and privately supported surveys, studies and clinical trials of interest to caregiving families dealing with chronic disabling health conditions, and health and service providers. Volunteers are often needed to determine whether experimental treatments or new ways of using known therapies are safe and efffective under controlled environments or to gather data that can expand knowledge and ultimately improve the lives of caregivers.  We encourage you to read our fact sheet, Evaluating Medical Research Trials and Clinical Trials , and discuss participation in any trials or research studies with your personal physician. Endorsement of studies by Family Caregiver Alliance is neither expressed nor implied.

► VIEW LISTINGS

Graduate student research.

In order to help further the field of caregiver research and advocacy and encourage emerging researchers, we also provide a page for graduate students to post research questions or links to surveys for research projects on caregiving. These postings are free of charge, but should you be able to make a contribution, a donation would be greatly appreciated.

How to List a Study

Website placement fee for not-for-profit organizations is $125; for for-profit businesses is $250; graduate students listings are free, but must have university contact information, related department, and professor overseeing the study.

• included in two successive issues each of our nationally-distributed e-newsletters, Policy Digest and Connections
• listings are limited to approx. 250 words, excluding title and link(s)
• listing remains on our website for three months
• FCA can invoice you for the fee, or you may charge it to a credit card

FCA’s website and newsletter audience includes caregivers, service providers, policy-makers and those interested in long-term care issues. Please call us at (800) 445-8106 or email Lana Sheridan for instructions on submitting your posting.

Further Information About Clinical Studies/Trials

NIH National Institute on Aging Alzheimer’s research registries www.nia.nih.gov/alzheimers/registries-and-matching-services

US National Institute of Health: Learn About Clinical Studies https://www.nih.gov/health-information/nih-clinical-research-trials-you

FDA Women in Clinical Trials campaign The FDA Office of Women’s Health and the National Institutes of Health Office of Research on Women’s Health (NIH ORWH) have joined forces and are working to promote greater diversity in clinical trial participation by reaching out to women who represent different ethnicities and ages, as well as those with various health conditions and disabilities. Please visit the website for more information: www.fda.gov/womeninclinicaltrials .

Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

Helping patients and caregivers share their voices

Patient and Family Caregiver Study Opportunities

We have hundreds of market research studies open for patients and caregivers. A few of the studies we are working to fill immediately are listed below.

If you are already a member of Rare Patient Voice and want to be considered for a patient-centric study listed below, please contact [email protected]

If you are NOT a member and are looking for study volunteer opportunities, please complete this sign-up process and include all medical conditions to be considered for one or more of the rare disease research studies listed below and any other similar studies.

Feel free to also share this page with friends or family who may be interested in participating in rare disease studies.

United States

Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 0-17) in the United States Participate in a 5-minute survey for a medical history platform.

Achondroplasia: Adolescents (Ages 16-17) and Parents of Children (Ages 10-17) in the United States Join a 120-minute in-person interview. Compensation is $565 to $835 .

Acquired Hypothalamic Obesity caregivers of patients under 18 United States 60-minute web-assisted phone interview plus a pre-work assignment, compensation is $150

Acute Bacterial Skin and Skin Structure Infections (ABSSSIs), Pneumonia patients diagnosed within the last 12 months United States 60-minute web-assisted phone interview, compensation is $150

Acute Myeloid Leukemia (AML) patients and caregivers United States 60-minute web-assisted phone interview, compensation is $120

Amyotrophic Lateral Sclerosis (ALS), Aphasia, Stroke patients and caregivers in San Diego, CA; San Francisco, CA; Phoenix, AZ United States 60-minute in-person interview, compensation is $150 /patient and $150 /caregiver

Autoimmune Encephalitis, Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOGAD), Neuromyelitis Optica Spectrum Disorder (NMOSD), Thyroid Eye Disease (TED) patients and family caregivers in Charlotte, Chicago, Cincinnati, Columbus, and Raleigh United States 60-minute in-person interview, compensation based on length of participation

Beta Thalassemia (Cooley’s Anemia), Cancer, Eczema (Atopic Dermatitis), Eosinophilic Esophagitis (EOE), Hodgkin's Lymphoma, Inflammatory Bowel Disease (IBD), Rheumatoid Arthritis (RA) caregivers of pediatric patients in Boston, Chicago, Dallas United States 60-minute in-person interview, compensation is $300

Beta Thalassemia (Cooley’s Anemia), Cerebral Adrenoleukodystrophy (CALD), Duchenne Muscular Dystrophy (DMD), Hemophilia A, Hemophilia B, Retinal Dystrophy, Sickle Cell Disease (SCD), Spinal Muscular Atrophy (SMA), Transfusion-Dependent patients United States 60-minute zoom interview, compensation is $120

Beta Thalassemia (Cooley’s Anemia), Sickle Cell Disease caregivers United States 45-minute online survey, compensation is $110

Breast Cancer patients (stage IV metastatic) United States 25-minute online survey, compensation is $50

Breast Cancer patients and caregivers United States 10-minute in-person survey (to include doctor), compensation is $150

Carcinoma, Liver Cancer patients and caregivers United States 30-minute web-assisted phone interview plus a 15-minute online survey, compensation is $60 for the interview and $30 for the survey

Cardiac Surgery, Sepsis patients and caregivers United States 60-minute web-assisted phone interview for patients or 90-minute web-assisted phone interview for patients and caregivers together, compensation is $120 for the patient only interview and $180 for the patient and caregiver interview

Chronic Heart Disease, Chronic Heart Failure patients United States 10-minute online survey, compensation is $25

Chronic Myeloid (Myelogenous) Leukemia (CML) male patients and caregivers of male patients United States 30-minute online survey, compensation is $60

Chronic Spontaneous Urticaria male patients United States 60-minute web-assisted phone interview, compensation is $120

Congenital Adrenal Hyperplasia (CAH) patients United States This is a 5-minute survey for a medical history platform, compensation is a $25 gift card

Congenital Adrenal Hyperplasia patients and caregivers United States 60-minute web-assisted phone interview, compensation is $120

Diffuse Large B Cell Lymphoma (DLBCL), Follicular Lymphoma patients and caregivers United States 60-minute web-assisted phone interview, compensation is $120

Dwarfism caregivers United States 30-minute online survey, compensation is $60

Endometrial Cancer patients United States 90-minute web-assisted phone interview, compensation is $200

Endometrial Cancer patients currently in treatment United States 30-minute web-assisted phone interview, compensation is $90

Esophageal Cancer, Gastric Cancer patients and caregivers United States 60-minute web-assisted phone interview, compensation is $120

Exocrine Pancreatic Insufficiency patients United States 10-minute online survey, compensation is $30

Familial Chylomicronemia Syndrome (FCS) patients and caregivers United States

Follicular Lymphoma patients and caregivers United States 60-minute web-assisted phone interview, compensation is $120

Generalized Pustular Psoriasis patients United States 6-hour advisory board plus travel time, compensation is $95 per hour

Grave's Disease (GD), Thyroid Eye Disease (TED) patients United States 120-minute in-person interview in New York City, compensation is $360

Grave's Disease, Thyroid Eye Disease (TED) patients and caregivers United States 45-minute web-assisted phone interview, compensation is $90

Head & Neck Cancer patients United States 60-minute focus group, compensation is $120

Hemophilia A patients United States 20-minute online survey, compensation is $40

Hepatitis C (Hep C) non-Caucasian patients United States 3-year recruit for multiple tasks, compensation is hourly

Huntington's Disease (HD) patients and caregivers United States 30-minute online survey, compensation is $60

Hypertrophic Obstructive Cardiomyopathy (HOCM) patients United States 2-week passive metering app, compensation is $300

IgA Nephropathy (Berger's Disease) patients United States 30-minute online survey, compensation is $100

IgA nephropathy (Berger's Disease) patients United States

IgA Nephropathy (Berger's Disease) patients and caregivers United States

Multiple Myeloma (MM) patients and caregivers United States 45-minute web-assisted phone interview, compensation is $90

Multiple Sclerosis: Clinically Isolated Syndrome (CIS), Relapsing Remitting MS (RRMS), Secondary Progressive MS (SPMS) patients ages 18-65 not living in Vermont United States 25-minute online survey, compensation is $50

Myasthenia Gravis (MG) patients diagnosed within the last 2 years United States 60-minute web-assisted phone interview, compensation is $120

Narcolepsy Type 1 With Cataplexy, Narcolepsy Type 2 Without Cataplexy male patients United States 30-minute online survey, compensation is $60

Non-Small Cell Lung Cancer (NSCLC) patients United States 60-minute web-assisted phone interview, 10-minute homework, 4-hour mobile ethnography, compensation is $125 for the interview, $25 for the homework, and $300 for the mobile ethnography

Pancreatic Cancer African American patients and caregivers (any ethnicity) United States 60-minute web-assisted phone interview, compensation is $150

Parkinson's Disease (PD) patients ages 40-50 and caregivers of patients ages 40-50 United States 60-minute web-assisted phone interview, compensation is $120

Parkinson’s Disease patients in Philadelphia, PA United States 60-minute in-person interview, compensation is $300

Paroxysmal Nocturnal Hemoglobinuria (PNH) patients United States 45-minute online survey, compensation is $90

Platinum Resistant Ovarian Cancer (PROC) patients United States 45-minute web-assisted phone interview, compensation is $90

Primary Biliary Cholangitis (PBC) patients United States 30-minute web-assisted phone interview, compensation is $60

Primary Biliary Cholangitis (PBC) patients United States 20-minute online survey, compensation is $40

Progressive Multifocal Leukoencephalopathy (PML) patients United States 60-minute web-assisted phone interview, compensation is $120

Prostate Cancer patients and caregivers United States 30-minute online survey, compensation is $60

Rheumatoid Arthritis or Ulcerative Colitis patients United States 30-minute online survey, compensation is $50

Schizophrenia patients ages 18-50 and caregivers United States 60-minute online bulletin board for caregivers and 45-minute follow-up interview for patients, compensation is $120 for the online bulletin board and $90 for the interview

Schizophrenia patients and caregivers United States 60-minute web-assisted phone interview, compensation is $62.50

Spinal Muscular Atrophy (SMA) caregivers of children ages 1-5 United States 60-minute web-assisted phone interview, compensation is $120

Spinal Muscular Atrophy (SMA) caregivers of patients who use Zolgesma United States 30-minute web-assisted phone interview, compensation is $60

Spinal Muscular Atrophy (SMA) patients and caregivers United States 30-minute online survey, compensation is $60

Ulcerative Colitis (UC) patients United States 20-minute online survey, compensation is $25

Urticaria patients United States 90-minute web-assisted phone interview plus confirmation of diagnosis, compensation is $180 for the interview and $75 for confirmation of diagnosis

Vanishing White Matter Disease caregivers United States 45-minute web-assisted phone interview plus a 15-minute pre-task assignment, compensation is $90 for the interview and $30 for the pre-task assignment

X-Linked Hypophosphatemia patients and caregivers United States 30-minute web-assisted phone interview, compensation is $60

United Kingdom

Colorectal (Colon) Cancer patients United Kingdom 75-minute web-assisted phone interview, compensation is 113 GBP

Glaucoma patients ages 40+ United Kingdom 45-minute web-assisted phone interview, compensation is 70 GBP

Pompe Disease patients and caregivers United Kingdom 15-minute online survey, compensation is 50 GBP

Primary Biliary Cholangitis (PBC) patients United Kingdom 30-minute web-assisted phone interview

Propionic Acidemia (PA) patients and caregivers United Kingdom 60-minute web-assisted phone interview, compensation is 95 GBP

Beta Thalassemia (Cooley’s Anemia), Sickle Cell Disease caregivers Canada 45-minute online survey, compensation is $108

Paroxysmal Nocturnal Hemoglobinuria (PNH) patients Canada 60-minute online bulletin board, compensation is 120 CAD

Primary Biliary Cholangitis (PBC) patients Canada 30-minute web-assisted phone interview

Sickle Cell Disease (SCD) patients and caregivers Canada 25-minute online survey, compensation is 50 CAD

More studies coming soon! --->

Primary Biliary Cholangitis (PBC) patients France 30-minute web-assisted phone interview

Primary Biliary Cholangitis (PBC) patients Germany 30-minute web-assisted phone interview

Propionic Acidemia (PA) patients and caregivers Germany 60-minute web-assisted phone interview, compensation is 110 Euros

Primary Biliary Cholangitis (PBC) patients Italy 30-minute web-assisted phone interview

Primary Biliary Cholangitis (PBC) patients Spain 30-minute web-assisted phone interview

Eczema, Psoriatic Arthritis, Rheumatoid Arthritis patients Australia Two 2-hour virtual sessions plus two 30-minute calls, compensation is 500 AUS

More studies coming soon! -->

New Zealand

More studies coming soon!

Participate in Patient-Centric Clinical Trials

Rare Patient Voice presents various opportunities worldwide for patients and caregivers to participate in rare disease clinical trials with a patient-centric approach.

Sign up for these clinical trial opportunities and help move science forward today.

Please contact study.inquiries@ rarepatientvoice.com with any questions.

711 Hampton Lane Towson, Maryland 21286 [email protected] (443) 986-1949

Visit our international site, rarepatientvoice.global

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Home » Rett Syndrome Caregiver Survey

Welcome to the Rett Syndrome Caregiver Survey

At Cadence Communications & Research, we aim to improve the lives of those affected by Rett Syndrome. We invite caregivers to share their valuable insights by participating in this survey.

Why Participate?

Caregiver insights are invaluable to companies developing potential therapies for Rett Syndrome. We invite you to participate in a compensated 10-minute survey conducted by Cadence Research, a health research and communications company.

By participating in this survey, you’ll have the opportunity to share your experiences with Rett Syndrome as a caregiver. Your experiences will be anonymous and will contribute to a growing body of research designed to support therapeutic advancements in Rett Syndrome. Please be assured that all results will be analyzed in aggregate, and individual responses will remain confidential.

Your Voice Matters

By sharing your experiences, you help us understand the caregiver experience and contribute to research for Rett Syndrome patients. As a thank you for your participation, you will receive an honorarium of $45 USD, via Visa or Mastercard gift card, or digital gift card to a select retailer.

If you are interested in participating, please click the link or scan the QR code below .

Thank you for your participation and dedication to the Rett Syndrome community.

Note: This survey is conducted by Cadence Communications & Research. All responses will be kept confidential.

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