Evaluating Questionnaires Used to Assess Self-Reported Physical Activity and Psychosocial Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Cognitive Interview Study

Abstract

Physical activity is increasingly being studied as a way to improve psychosocial outcomes (e.g., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth) among survivors of adolescent and young adult (AYA) cancer. Assessing levels of and associations between self-reported physical activity and psychosocial outcomes requires clear, appropriate, and relevant questionnaires. To explore how survivors of AYA cancer interpreted and responded to the following eight published questionnaires: Leisure Time Exercise Questionnaire, Exercise Self-Efficacy Scale, Physical Self-Description Questionnaire, Rosenberg Global Self-Esteem Scale, Multidimensional Body-Self Relations Questionnaire, Posttraumatic Growth Inventory, Functional Assessment of Cancer Therapy-General (FACT-G), RAND 36-Item Health Survey 1.0 (RAND-36), cognitive interviews were conducted with three men and four women age 18–36 years who were diagnosed with cancer at age 16–35 years. Initially, the first seven questionnaires listed above were assessed. Summaries of the interviews were prepared and compared across participants. Potential concerns were identified with the FACT-G; thus, a second interview was conducted with participants to explore the clarity, appropriateness, and relevance of the RAND-36. Concerns identified for the FACT-G related mostly to the lack of relevance of items pertaining to cancer-specific aspects of quality of life given that participants were posttreatment. No or few concerns related to comprehension and/or structure/logic were identified for the other questionnaires. In general, the questionnaires assessed were clear, appropriate, and relevant. Participants' feedback suggested they could be used to assess self-reported physical activity and varied psychosocial outcomes in studies with survivors of AYA cancer, either with or without slight modifications.

Background

Adolescents and young adults (AYAs) diagnosed with cancer between the age of 15–39 years comprise a unique population in cancer care.¹ Similar to survivors of child and adult cancer, survivors of AYA cancer experience negative side effects, which may increase their risk of developing other chronic diseases and heighten their risk of premature mortality.^2–5 Survivors of AYA cancer may also face delays in achieving developmental milestones because of disease- and treatment-related factors.^6–9 This can have a negative impact on their health and psychosocial functioning.^10–12 For these reasons, many have called for more research into possible ways to promote health and psychosocial functioning among survivors of AYA cancer.^13,14

Several systematic reviews show that physical activity is related to enhanced health and psychosocial functioning throughout the cancer trajectory (i.e., during treatment, short-term and long-term survivorship, palliation), regardless of cancer type and age at diagnosis.^15–18 Among the studies reviewed, several psychosocial outcomes have been assessed, including quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, and posttraumatic growth.^15–18 However, few studies have examined the relationships between physical activity and psychosocial outcomes among survivors of AYA cancer.^19–25 These studies provide evidence that physical activity is related to various psychosocial outcomes. A key limitation associated with published studies focused on survivors of AYA cancer is that most of the questionnaires used were not developed specifically for them. Ensuring the questionnaires used are clear, appropriate, and relevant for survivors of AYA cancer is necessary to enhance confidence in the validity of the findings and to inform decisions around questionnaire selection in future research.

Conducting cognitive interviews with individuals who are representative of the population from which the sample will be drawn from in subsequent studies (e.g., survivors of AYA cancer) is a useful technique by which to evaluate questionnaires.^26,27 This type of interview can help researchers gain in-depth information pertaining to comprehension, processing, and response selection, and can help to identify potentially problematic questions, ambiguities, and/or difficulties participants may encounter while interpreting and responding to questionnaires.²⁷ In addition, the findings from cognitive interviews allow researchers to see if participants' responses represent the intended meaning of the question.²⁷ Therefore, the purpose of this study was to conduct cognitive interviews to explore how survivors of AYA cancer interpret and respond to questionnaires widely used to assess self-reported physical activity and psychosocial functioning (i.e., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth). The specific research questions addressed were:

(1) What difficulties, if any, do survivors of AYA cancer encounter when interpreting, recalling, processing, and responding to selected questionnaires used to assess physical activity and psychosocial outcomes?

(2) Are the selected questionnaires used to assess physical activity and psychosocial outcomes appropriate and relevant for survivors of AYA cancer?

Methods

Participants

After receiving approval from the University Research Ethics Board, a purposeful sample representative of survivors of AYA cancer likely to be recruited in future studies were approached to participate in this study. Age at cancer diagnosis and current age were the primary factors taken into account when selecting participants, such that at least one AYA diagnosed for the first time between age 15–19, 20–24, 25–29, 30–34, and 35–39 years (and currently age 15–44 years) were recruited. Secondary factors that were taken into consideration included diagnosis and time since treatment. Thus, survivors of AYA cancer meeting the aforementioned age criteria were eligible if they: (1) had completed cancer treatment within the past 5 years; (2) showed no current evidence of progressive disease, secondary cancer, or second cancers; (3) lived within 150 km of the University of Ottawa; and, (4) were able to read, understand, and provide informed consent in English. Survivors of AYA cancer were not eligible if they: (1) had physical impairments precluding participation in physical activity; (2) were unwilling or unable to provide informed consent and/or passive parental consent (the latter if they were younger than 18 years); and/or, (3) received a diagnosis of brain cancer or thyroid cancer.

Data collection

Data were collected during a face-to-face interview at a private location of participants' choosing (e.g., their home). At the beginning of the interview, the first author (and interviewer) informed participants that the research team was evaluating questionnaires developed by other researchers. She explained that the goal of the interview was to find out what, if anything, was problematic with the questionnaires. Participants then completed a brief electronic sociodemographic questionnaire and the following seven questionnaires, which were chosen based on their wide usage by researchers investigating self-reported physical activity and psychosocial functioning among adults diagnosed with cancer: (1) Leisure Time Exercise Questionnaire (LTEQ);²⁸ (2) Exercise Self-Efficacy scale (EXSES);²⁹ (3) Physical Self-Description Questionnaire (PSDQ) Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales;³⁰ (4) Rosenberg Global Self-Esteem Scale (RSES);³¹ (5) Multidimensional Body-Self Relations Questionnaire (MBSRQ) Appearance Evaluation (AE) scale and Body Areas Satisfaction Scale (BASS);³² (6) Posttraumatic Growth Inventory (PTGI);³³ and, (7) Functional Assessment of Cancer Therapy-General (FACT-G).³⁴ Participants completed this task without any assistance. Afterward, the cognitive interview began. Methodological descriptions of what conducting cognitive interviews involve and techniques used during the interviews have been published elsewhere.²⁷ Interviews were audio recorded and lasted between 51 and 111 minutes (mean = 73, SD = 19). During the interviews, participants had access to the questionnaires so that they could follow along.

Data analysis

Data analyzed consisted of participants' responses during the interview as well as the interviewer's notes.²⁷ Summaries were compared across participants. This was done in a qualitative (i.e., identifying common patterns) and quantitative sense (i.e., frequency of the concerns that emerged). Following this, both authors met to review the summaries. Through discussion and a process of consensus, concerns were categorized into: comprehension, recall, response category, appropriateness and relevancy, or structural–logical concerns.²⁷

Results

Seven survivors of AYA cancer were recruited and consented to participate in this study. They were currently age 18–36 years and had been diagnosed when they were age 16–35 years. Participants' sociodemographic and disease-related characteristics are presented in Table 1.

Table 1.

Characteristics of Study Participants

	Age (years)
Sex	At diagnosis	Current	Type of cancer	Treatment(s) received	Months since treatment completion	Annual household income ^a	Highest level of education attained	Currently studying (yes/no)	Currently working (yes/no)
F	16	18	Hodgkin's lymphoma	Chemotherapy	38	Do not know	Completed some university/college	Yes	Yes
M	18	20	Hodgkin's lymphoma	Chemotherapy	22	>100,000	Completed some university/college	Yes	No
F	23	25	Breast	Surgery, chemotherapy, radiotherapy, hormonal therapy	25	20–39,999	Completed university/college	No	Yes
M	28	30	Rectal	Surgery, chemotherapy, radiotherapy	20	<20,000	Completed some high school	No	Yes
M	28	30	Testicular	Surgery, chemotherapy, stem cell transplant	9	>100,000	Completed university/college	No	Yes
F	31	36	Hodgkin's lymphoma	Chemotherapy	59	>100,000	Completed graduate school^b	Yes	No
F	35	36	Ovarian	Surgery, chemotherapy	8	80–99,999	Completed graduate school^b	No	Yes

All participants self-identified as culturally/racially White.

Reported as Canadian dollars.

To help participants differentiate between the response options of Completed (some) university/college and Completed graduate school, Master's and doctoral degrees were listed as examples in the latter response option.

F, female; M, male.

During the interviews, no concerns were identified for the MBSRQ-AE scale and BASS. Comprehension and/or structural–logical concerns were identified for the LTEQ, EXSES, PSDQ Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales, RSES, and PTGI, and concerns related to appropriateness and relevancy were identified for the FACT-G. The findings are summarized below.

Comprehension concerns

In general, participants understood what each questionnaire was asking. They demonstrated this by accurately paraphrasing or explaining items and instructions in their own words. Despite this, participants commented that brief introductory sentences preceding each questionnaire would be helpful to explain what was being assessed. In addition, they had concerns with the instructions of the EXSES and some of the terminology used in the LTEQ.

Overly general instructions

The first concern was related to the instructions of the EXSES, which state: “Assuming you are planning on beginning, or are already engaging in physical activity regularly, the item below is designed to assess your beliefs in your ability to begin or continue engaging in physical activity for 150 minutes per week at moderate to vigorous intensities for the next 12 weeks.” Participants must then use a 0%–100% scale to indicate their degree of confidence. Probing during the interviews revealed that participants had different interpretations of the question, and thus responded with different information in mind. All participants considered how confident they felt in their physical ability (i.e., task self-efficacy) to begin or continue engaging in physical activity; however, some also considered how confident they felt in their ability to overcome barriers to physical activity (i.e., barrier self-efficacy) and their ability to fit physical activity into their schedule (i.e., scheduling self-efficacy). When asked to consider other aspects of self-efficacy, the participants who had only focused on task self-efficacy indicated that their responses might have been different. They therefore felt that the instructions of the EXSES could be more specific to ensure the desired type(s) of self-efficacy is/are being assessed.

Overly general definitions of complex terminology

The second concern participants had was with regard to the terminology used in the LTEQ. A key feature of the LTEQ is that participants are asked to report how often they participated in strenuous-, moderate-, or mild-intensity physical activity during the past week. Although participants were comfortable recalling the number of times they participated in physical activity, probing revealed that they held differing interpretations for each intensity. Consequently, participants reported the frequency of activities of similar intensity in different intensity categories. For example, some participants reported activities typically categorized as mild based on the Compendium of Physical Activities³⁵ as moderate and others reported activities typically categorized as strenuous as moderate. Moreover, some participants were unsure about the intensity of the physical activity they had done. After discussing these concerns, participants expressed that having a more thorough definition of each intensity, alongside the examples already provided, would have helped.

Recall and response category concerns

No concerns were identified with regard to ease of recall. In addition, participants' confidence in their ability to recall information and select answers from the response categories provided was not an issue.

Appropriateness and relevancy concerns

One of the main concerns participants had was related to the appropriateness and relevancy of the FACT-G because there were questions they failed to connect with. For example, when being asked to reflect on whether they felt they were losing hope in their fight against their illness, participants did not know how to respond now that they had completed treatment. They noted this question (and others) would be more relevant before or during treatment because they now felt they had “won” their fight against cancer and were “disease-free.” Relatedly, they did not feel as though the FACT-G was capturing their current quality of life, which they saw as being essential. They explained that although they could complete this questionnaire, they believed another questionnaire focused on more general quality of life (rather than cancer- and treatment-specific quality of life) would have been more appropriate. In addition, probing during the interviews allowed for the discovery that even though participants were asked to report pain symptoms when completing the FACT-G, few reported any. Indeed, only one participant indicated that they had experienced pain somewhat during the past 7 days, despite other participants revealing they had been experiencing pain somewhat to very much when interviewed. They explained that they felt the question about pain was to be linked explicitly to their cancer, not because of recent injuries (e.g., broken finger), persistent conditions (e.g., chronic knee pain), and long-term effects of their treatment (e.g., peripheral neuropathy). Therefore, they did not bother reporting that they had been experiencing pain and suggested that if the goal was to assess both general and cancer-related symptoms, this should have been specified.

Structural–logical concerns

Participants raised concerns in relation to the structure of the seven questionnaires when combined into a single online survey. For example, only after completing the questionnaires and taking part in the interview did some participants notice that they completed the RSES incorrectly as they failed to realize that the response options were ordered differently for this questionnaire. Participants suggested that response options presented in the RSES be reversed such that they are presented from low/disagree (left) to high/agree (right) to be congruent with the response options presented in the other questionnaires they completed. They also discussed how adding brief descriptive anchors to the PTGI would be helpful and would reduce the need to scroll up/down when responding (which may have to do with how the electronic questionnaire was set up). Although the overall amount of time it took to complete the questionnaires was not an issue (mean = 25 minutes, SD = 9, range = 16–37), participants did comment on the length and repetitive nature of the PSDQ-Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales. In turn, they wondered if it was possible to remove repetitive/redundant items. As well, participants commented that, despite having no issues using the response options, the close-ended nature was limiting because they could not elaborate or explain their responses. They further expressed a strong desire for an open-ended question to be included.

Brief Summary and Second Round of Cognitive Interviews

Overall, six of the seven questionnaires tested were clear, appropriate, and relevant with this sample of survivors of AYA cancer, and participants did not have major issues with them. However, concerns related to appropriateness and relevancy were identified for the FACT-G. Participants' feedback suggested that a general measure of quality of life should be considered. This prompted the assessment of another quality of life questionnaire that could be used either instead of or in combination with the FACT-G. The RAND 36-Item Health Survey 1.0 (RAND-36),³⁶ a questionnaire that has demonstrated good psychometric properties,³⁷ and that has been used in several studies with adults diagnosed with various types of cancers,^38–41 was selected. The RAND-36 contains the same items as the Medical Outcomes Study Short-Form 36 Health Survey,⁴² a widely used questionnaire with demonstrated psychometric properties among adults diagnosed with cancer,^43,44 but the scoring method differs (i.e., the RAND-36 is scored on a 0–100 scale) and it is free of charge. The RAND-36 was assessed during a follow-up cognitive interview with all seven participants. The same procedures used during the first interview were followed, with the exception that the interview was conducted over the phone. These interviews lasted on average 13 minutes (SD = 3, range = 11–16). Data were analyzed in the same way as it was for the first round. No concerns were identified by participants.

Discussion

Due to a growing interest in exploring the relationships between physical activity and psychosocial functioning among survivors of AYA cancer, establishing that questionnaires not specifically developed for this population are interpreted and responded to accurately is important. Considering the limited evidence for the clarity, appropriateness, and relevancy of many of the questionnaires used in previous studies,^19–25 conducting cognitive interviews is a crucial step in the process. Whereas studies employing cognitive interviews are becoming popular to better understand how questionnaires perform across a range of populations,^45–48 this study represents the first of its nature to use cognitive interviews to explore how survivors of AYA cancer interpreted and responded to questionnaires that can be used to assess self-reported physical activity and psychosocial functioning (i.e., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth). Results provide evidence that the LTEQ, EXSES, PSDQ Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales, RSES, MBSRQ-AE scale and BASS, PTGI, and RAND-36 were clear, appropriate, and relevant.

Despite the encouraging findings, concerns related to participants' understanding of the instructions on the EXSES and some of the terminology in the LTEQ were identified. Considering that self-efficacy is a multidimensional construct that includes barrier, task, and scheduling self-efficacy,^49–51 the EXSES could either be used to obtain information about multiple facets of exercise self-efficacy or a single facet. In either case, modifying the current instructions to explicitly state which type(s) participants should consider when completing the EXSES seems warranted. As well, seeing as the LTEQ is often used to examine associations between physical activity and psychosocial outcomes among adults diagnosed with cancer,^{for review, see} ⁵² adding comprehensive definitions for strenuous, moderate, and mild intensity in the LTEQ should be considered to ensure participants are able to accurately classify their activities. If indeed these or other changes are made (e.g., adding a few sentences preceding each questionnaire that describe what the researcher is assessing as suggested by participants), further psychometric testing of the revised versions would be an important next step because making modifications may affect score reliability and validity.^53,54

In addition to suggesting modifications, participants highlighted that efforts should be made to reduce repetition within questionnaires. Accordingly, when possible, short forms should be favored. For example, the short form of the PSDQ-Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales⁵⁵ that consists of 15 items instead of 30 items could be used. Furthermore, as most questionnaires assessed in this study do not include open-ended options, including one or more open-ended questions could be beneficial. Whereas close-ended response options are widely used to collect data in light of the advantages (e.g., amenable to research with large samples, allow for analyses to determine a variety of relationships between variables, and typically have higher response rates),^56,57 there are limitations. As revealed by participants, they do not allow for elaborating or explaining responses. With the understanding that questionnaires with close-ended response options will continue to be used and are useful to answer a range of research questions, it may be valuable to provide survivors of AYA cancer with at least one open-ended question when administering questionnaires. Zebrack et al.⁵⁸ did this by ending their survey with a single open-ended question and found that survivors of AYA cancer provided rich qualitative data about their positive and negative experiences with their medical care. The authors concluded that the data gathered from this single question extended the findings from the closed-ended items, and importantly provided data that would not have been captured otherwise. Thus, including one or more open-ended question may have implications for collecting in-depth information pertaining to the experiences of survivors of AYA cancer.

Last, despite the common use of the FACT-G⁵⁹ and demonstrated psychometric properties among adults diagnosed with cancer,^34,59–64 concerns related to appropriateness and relevancy were identified by participants who were diagnosed with cancer at age 16–35 years, were currently age 18–36 years, and had completed treatment 8–59 months prior to being interviewed for this study. The main concern was that it did not cover more general aspects of quality of life. As a result, participants felt it was more suitable for individuals going through cancer treatment. This is perhaps not surprising as the FACT-G was initially developed to measure quality of life during treatment for cancer.³⁴ To ensure that cancer-specific and more general aspects of quality of life are captured, some researchers have used both cancer-specific and generic measures of quality of life.^65–67 Although decisions regarding which questionnaire(s) to use should be made in light of the research objective(s) being addressed, a combination of cancer-specific and general measures may be necessary to adequately assess aspects of quality of life that are important for individuals diagnosed with and treated for cancer.⁶⁸ Based on the current results, the RAND-36, which has previously been used with middle-age and older adult survivors of cancer,^38–41 may be well suited for survivors of AYA cancer who have completed treatment.

Limitations and future directions

There are limitations of this study that should be taken into account when interpreting the results. The first limitation is with regard to the culture/race of the sample. All participants recruited self-identified as White, which was not intentional. It is possible that including the perspectives of a more culturally/racially diverse sample might have resulted in additional or different concerns being identified. Despite this limitation, the sample was purposefully selected to be representative of participants likely to be recruited in future studies with regard to age at diagnosis, current age, type of cancer, time since treatment, and socioeconomic status (i.e., education, income). A second limitation is that the RAND-36 was assessed in isolation. It is possible that participants would have raised concerns if the questionnaire was assessed at the same time as other questionnaires. Third, although the present study provides information that may help inform the design of future studies on physical activity and psychosocial functioning, this study was conducted with seven survivors of AYA cancer, which raises the possibility that additional interviews with another sample or more participants could have yielded different insights.²⁶ Finally, it should be underscored that the findings from cognitive interviews are not meant to confirm score validity or reliability.²⁷ Further testing of score reliability and validity for these questionnaires with survivors of AYA cancer is required in quantitative studies. Guidelines described by Messick⁶⁹ could inform the development of such studies.

Conclusion

Survivors of AYA cancer had few problems interpreting and responding to the LTEQ, EXSES, PSDQ Appearance, Strength, Endurance, Body Fat, and Physical Self-Esteem scales, RSES, MBSRQ-AE scale and BASS, PTGI, and RAND-36. Overall, results were encouraging and suggestive that these questionnaires were clear, appropriate, and relevant for survivors of AYA cancer. Although not critical, it is possible that providing more specific instructions for the EXSES, defining the different physical activity intensities in the LTEQ, adding explanatory sentences to each questionnaire, and providing at least one open-ended question could improve the quality of data collected from survivors of AYA cancer. Given that the development and refinement of questionnaires is an ongoing process,⁷⁰ efforts should be made to continue developing and testing questionnaires for AYAs diagnosed with cancer.

Footnotes

Acknowledgments

The authors would like to thank the individuals who participated in this study. This work was conducted while the first author was supported by a Vanier Canada Graduate Scholarship and while the second author was supported by a Canadian Cancer Society Career Development Award in Prevention. The RAND-36 was developed as part of the Medical Outcomes Study and is available online ().

Author Disclosure Statement

No competing financial interests exist.

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