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Development, translation, and psychometric evaluation of a questionnaire designed to explore knowledge, barriers, facilitators, and preferences to physical exercise in cancer survivors

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Article: 2287231 | Received 27 Apr 2023, Accepted 19 Nov 2023, Published online: 06 Dec 2023

ABSTRACT

Background & objective

Cancer, a global health concern, affects millions annually, with survivors facing ongoing health risks. Physical exercise offers potential benefits, yet participation rates among cancer survivors, particularly in India, remain low. We aimed to create a validated questionnaire for the Indian context, exploring exercise-related knowledge, barriers, facilitators, and preferences. This tool seeks to aid healthcare professionals and researchers in understanding and addressing exercise engagement among Indian cancer survivors.

Methodology

It included questionnaire development through an extensive literature review and in-depth interviews with cancer survivors and their stakeholders. The development of the questionnaire was followed by the Delphi technique. Experts rated questions for clarity, essentiality, and relevance. Feedback led to questionnaire revisions, resulting in a final version comprising 30 questions.

Results

Content validity was assessed using the Content Validity Ratio (CVR), Content Validity Index (CVI), and cognitive interviews. The CVR and CVI indicated excellent agreement among experts, confirming the questionnaire’s relevance. Kappa for Inter-Rater Agreement: A kappa statistic assessed inter-rater agreement, revealing a moderate level of agreement among raters. The test–retest reliability of the questionnaire was evaluated in both English and Hindi versions. The Intra-class correlation coefficient for the English version was 0.95, and for the Hindi version, it was 0.92, indicating strong reliability.

Conclusion

This study created a robust valid and reliable questionnaire to assess factors impacting physical exercise in Indian cancer survivors. This tool offers valuable insights for healthcare professionals and researchers, aiding tailored interventions to enhance the well-being of Indian cancer survivors.

Introduction

Cancer is a prominent global cause of death, accounting for approximately 10 million deaths and 19.3 million new cases in 2020 [Citation1]. Although advancements in early cancer detection and treatment have improved survival rates, cancer survivors still face an increased risk of secondary cancer, treatment complications, and other non-communicable diseases [Citation2,Citation3]. Engaging in physical exercise has been shown to mitigate these risks, with evidence linking physical activity interventions to improved quality of life, enhanced self-esteem, and reduced anxiety among cancer survivors [Citation4,Citation5]. The American Cancer Society recommends that cancer survivors should engage in 150 min of physical exercise per week, yet only 29% of the population reported participating in physical exercise [Citation6].

Unfortunately, despite the valuable gains, the level of physical activity tends to decline over time in cancer survivors [Citation7]. This decline can be attributed to various factors, including limited awareness [Citation8], high cost of services, limited accessibility to services [Citation9], lack of moral support [Citation10], and insufficient guidance from healthcare professionals due to their busy schedules [Citation11]. Although some studies have examined the factors contributing towards decline in physical activity of cancer survivors as barriers, motivators, and facilitators to physical exercise, using self-formulated questionnaires, they lack the use of valid and reliable assessment tools [Citation8–13]. Additionally, limited literature exists regarding cancer survivors’ awareness of the long-term health benefits and well-being associated with physical exercise [Citation14].

Moreover, in the Indian context, no study has specifically investigated factors such as knowledge, barriers, preferences, and facilitators of physical activity among cancer survivors. Understanding these concepts is crucial for developing successful interventions aimed at increasing the participation of cancer survivors in physical exercise. However, this objective can only be achieved with the presence of a valid and reliable questionnaire or assessment tool. While previous studies may serve as a reference, their questionnaires were administered to populations with different sociocultural factors, which encompass education, language, values, beliefs, religion, attitudes, and habits. These factors have been reported to influence health outcomes [Citation15]. While physical fitness primarily refers to an individual’s physiological state and performance, it is influenced by a range of sociocultural factors that cannot be disregarded. Physical fitness, as a physiological characteristic or metric, encompasses various components such as cardiovascular endurance, muscular strength, flexibility, and body composition. These aspects are typically assessed through objective measurements and assessments. However, it is crucial to recognize that individuals’ physical fitness levels are not solely determined by their genetics or inherent physiological attributes. Sociocultural factors significantly influence an individual’s behaviors, choices, and opportunities, which ultimately impact their physical fitness outcomes [Citation15]. Therefore, it is imperative to develop, translate, and validate a questionnaire that encompasses components of knowledge, including barriers, preferences, and facilitators of physical exercise among cancer survivors, specifically for the Indian population. Furthermore, since Hindi is the most widely spoken language in India, it is essential to ensure the questionnaire is available in Hindi to reach a significant portion of the population. Thus, the current study aimed to develop, translate, and validate a questionnaire, which was subsequently evaluated for its validity and reliability.

Materials and methods

The initiation of the study was contingent upon obtaining ethical clearance from the Institutional Review Board (AJIRB-EC/03/2019). Furthermore, the study was registered with the Clinical Trial Registry of India (CTRI/2019/07/020212). Employing a cross-sectional study design, the research encompassed cancer survivors aged 18 years and above, including both males and females, regardless of the affected area, with the prerequisite ability to comprehend and read English and/or Hindi.

The development of the questionnaire involved searching the literature, interviewing the cancer survivors and their stakeholders, conducting the Delphi to validate the developed questionnaire, translation of the developed questionnaire and finally establishing the validity and reliability of the questionnaire.

Literature search

A search was conducted through PubMed, Science Direct, and Google Scholar from inception to 2020 using the Boolean operators “AND” or “OR” were employed to combine the following keywords: Cancer survivors, physical exercises, barriers, facilitators, motivators, preferences, knowledge, physical activity. The research papers which evaluated the physical activity level, barriers, knowledge, facilitators, and preferences in cancer survivors were studied separately by two reviewers to note down the factors which influence various health outcomes in cancer survivors and used to generate the questions.

Interview process

Qualitative research was employed to conduct in-depth interviews with a diverse group of cancer survivors in India, regardless of cancer type, gender, or education. Open-ended questions were utilized to explore barriers, facilitators, and preferences related to physical exercise in individuals aged 18 and above. The interviews aimed to comprehensively capture participants’ experiences and concerns regarding their engagement in physical exercise.

Drafting of the questionnaire

Data from interviews and a literature review informed the development of a 30-question draft questionnaire. The details of the included questions are given in . Careful attention was paid to question clarity, avoiding jargon and ambiguity to ensure participant understanding.

Table 1. Questions included while drafting of the questionnaire.

The Delphi process

The Delphi technique, originally developed by the Rand Corporation [Citation16], was employed in this study to achieve expert consensus. A panel of 10 members was identified and 8 were selected. Panel members were required to have a minimum of 5 years of exclusive experience working with cancer survivors, including 4 physiotherapists (Delhi, Mumbai, Bangalore, and Kolkata), 2 oncologists (Delhi, Chennai), 1 psychologist (Delhi), and 1 nurse (Delhi). Invitations were sent via email, outlining the study’s significance and the expected contribution. After their consent, the first Delphi round commenced with the questionnaire distribution via email.

For each item in the questionnaire, panel members were asked to rate clarity on a 4-point scale (1 = not clear, 2 = needs revision, 3 = clear with minor revisions, 4 = very clear), essentiality on a 3-point scale (1 = essential, 2 = useful but not essential, 3 = not necessary), and relevance on a 4-point scale (1 = not relevant, 2 = somewhat relevant, 3 = quite relevant, 4 = highly relevant).

Each panel member was assigned a unique code from 1 to 8 for recording their responses. To ensure control over chance agreement, it is recommended to have a minimum of five experts review an instrument [Citation17].

Establishing the content validity

Validity ensures that an instrument accurately measures its intended purpose. Content validity, assessed using numerical methods, determines the alignment of items with the subject area [Citation18]. Cognitive interviews were used to confirm cancer survivors’ understanding of questionnaire items [Citation18,Citation19]. Our study employed Content Validity Ratio (CVR), Content Validity Index (CVI), and cognitive interviews to establish content validity and calculation of Kappa for inter-rater reliability.

CVR (Content Validity Ratio): CVR was calculated based on expert panel responses. The formula used was CVR = (Ne – N/2)/(N/2) [Citation18], where Ne represents the number of experts who deemed the item “essential,” and N is the total number of experts. The minimum and maximum CVR values range from −1 to +1. A higher score indicates greater agreement among experts. To determine whether a question should be retained, we referred to the Lawshe table [Citation18]. With eight panelists in our study, the minimum CVR value required was 0.75 [Citation18].

I-CVI (Item-Content Validity Index): I-CVI was assessed by dividing the number of panelists who agreed on a question by the total number of experts [Citation18,Citation20]. I-CVI values range between 0 and 1. An I-CVI exceeding 0.79 signifies an item’s relevance. If I-CVI falls between 0.70 and 0.79, revisions are needed, while values below 0.70 indicate the item should be eliminated.

S-CVI (Scale Content Validity Index): S-CVI evaluates the overall content validity of the tool, focusing on items rated as “very relevant” [Citation18]. Two methods were used: Universal Agreement (S-CVI/UA) and Average CVI (S-CVI/Ave) [Citation18]. S-CVI/UA calculates the proportion of items with an I-CVI of 1, while S-CVI/Ave sums all I-CVIs and divides by the total number of items.

An excellent content validity is indicated by an S-CVI/UA value of 0.8 or higher and an S-CVI/Ave value of 0.9 or higher [Citation19].

Cognitive interviews

Cognitive interviews were employed to evaluate respondents’ comprehension and responses to survey questions, uncovering potential issues and gaining insights. This technique involved clinicians and patients, utilizing think-aloud and verbal probing methods to assess their understanding of survey items [Citation21–23]. Questions were designed to delve into comprehension, decision-making, memory retrieval, and response selection processes [Citation22,Citation23]. Interviews with 10 cancer survivors at two Delhi hospitals categorized responses as “No revision needed,” “Some revision needed,” or “Unclear,” ensuring questionnaire clarity and effectiveness. The use of cognitive interviews [Citation20] further ensured that cancer survivors comprehended and interpreted questionnaire items correctly. This comprehensive content validation process, incorporating both numerical methods and qualitative assessments, underscores the questionnaire’s reliability and relevance in capturing the targeted constructs.

The details of the questions asked are mentioned in online Appendix 1.

Calculation of kappa

While the CVI (Content Validity Index) is widely used to assess content validity, Wynd et al. have pointed out its limitation in accounting for chance agreement [Citation21]. To address this concern, they suggested incorporating a kappa statistic alongside CVI. The kappa statistic measures the degree of agreement beyond chance and is calculated using the formula: K = (I-CVI – Pc)/(1 – Pc), where Pc represents the probability of chance agreement (Pc = [N!/A!(N-A)!]* 0.5N), N is the number of experts, and A is the number of experts who agree that the item is relevant. Kappa values above 0.74 are considered excellent, values between 0.60 and 0.74 are considered good, and values between 0.40 and 0.59 are considered fair [Citation22]. For the calculation, all eight raters were asked to mark each question for relevance i.e. not relevant, somewhat relevant, quite relevant, and highly relevant. Based on the response of all the raters Kappa was calculated.

Translation of the questionnaire

The translation of the questionnaire was conducted according to the guidelines provided by Bradley CL 1994 [Citation23]. Hindi is the national language and most spoken language throughout India. The current questionnaire was translated into Hindi language. The following steps were taken for the translation process:

  1. Initially, experts (a physiotherapist, a clinical psychologist, and an occupational therapist, a Hindi and English linguistic) were invited and their consent was taken to participate in the study for the translation process.

  2. Forward translation was carried out by translating the English questionnaire into Hindi. This step was carried out by a healthcare provider whose native language was Hindi and who was fluent in both English and Hindi language. This step resulted in an intermediate Hindi version of the questionnaire.

  3. After this, the questionnaire was sent to an expert panel which consisted of 3 members i.e. a physiotherapist, a clinical psychologist, and an occupational therapist from academic sector. This panel was formed to identify and resolve the differences between the English and the Hindi versions of the questionnaire. This step did not include the Hindi translator.

  4. The final step included the back translation of the intermediate Hindi version to again English language. This step was carried out by an expert in English language having Master degree in English with 5 years of experience in teaching and whose mother tongue was Hindi. After this the back-translated English version was compared with the original English version by the panel experts.

  5. Pre-testing of the Hindi version: The pilot testing of the Hindi version was done. Along with the filling of the Hindi questionnaire the participants were interviewed in detail to get their understanding of the questionnaire. The questions asked were like what they understood from the questionnaire; to check their understanding they were asked to repeat the questions in their own words; if they found it difficult to interpret and understand the questions.

  6. Psychometric evaluation of the English and the translated Hindi version of the questionnaire were conducted.

Evaluation of the validity and reliability

COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) guidelines were followed for the evaluation of validity and reliability [Citation24].

A sample of 152 individuals was taken for the estimation of test–retest reliability at power 0.80 [Citation25]. This sample was assessed on two occasions i.e. on day 1 (questionnaire was filled for the first time) and on day 14 (questionnaire filled after 14 days by the same individuals). Bland–Altman graph was used to compare the mean score of the sample on day 1 and day 14. The interval taken between pre-test and post-test is of 14 days as this much time considered appropriate to see the change in responses [Citation25].

Results

A total of 387 cancer survivors were recruited (38 for the interview process, 35 for pilot testing of the translated Hindi version, 10 participated in cognitive interview, and 152 each for establishing the validity of English and Hindi version). Participants recruited were cancer survivors of ≥18 years of age. The demographics of the participants are depicted in .

Table 2. Demographics of the participants.

Interview process results

A total of 38 cancer survivors participated in the interviews, and the study also involved stakeholders, including 12 relatives, 6 nurses, 1 psychologist, 2 oncologists, 4 physiotherapists, and 2 occupational therapists. Participants were recruited from Delhi’s Action Balaji Cancer Hospital and Rajeev Gandhi Cancer Hospital. Insights were gathered on difficulties faced during exercises, awareness of physiotherapy, factors influencing motivation, and exercise preferences, including type, partners, location, timing, and duration.

Delphi process results

A panel of 8 experts was selected, initially identifying 10 from various regions of India (Delhi, Mumbai, Chennai, Bangalore, and Kolkata). However, 2 experts couldn’t participate due to scheduling conflicts. After the first round, three experts found all questions essential but recommended language improvements for three questions. Additionally, five experts identified one barrier question as “non-essential” and recommended language modifications for 10 questions. The questionnaire underwent significant changes based on their feedback and was redistributed for the second round. In the second round, strong agreement was reached on most questions, concluding the Delphi process after two rounds. The response collection spanned two months, during which all panel members provided their feedback.

The final questionnaire consisted of 30 questions: 5 for gathering general information, 10 for preferences, 6 for knowledge, 4 for barriers, and 5 for facilitators – all were formulated and validated.

Translation results

Forward translation resulted in an intermediate Hindi version of the questionnaire. After which both the Hindi and the English questionnaires were compared for discrepancies by a panel of a physiotherapist, a clinical psychologist, and an occupational therapist from academic sector. No discrepancies were found between the two versions. In back translation the translated Hindi version was translated back to English did not result in any discrepancies between the back-translated and the original English version of the questionnaire.

The pilot testing of the Hindi version was done on 35 cancer survivors to evaluate their understanding of the questionnaire. Not a single participant found it difficult to understand any of the questions and they found the questionnaire to be easy to understand and respond.

Content validity

CVR results

22 items were marked essential by all the panelists. Question 2, 4, 6, 8, 10, 14, 16, 17 was indicated non-essential by Panelist no. 7, 4, 1, 2, 8, 5, 3, 2, respectively. Panelist no. 6 recorded all questions as essential. Twenty-two items had a CVR value 1 and eight items had a CVR value 0.75. The CVR of the overall questionnaire was 0.933. depicts the CVR of each item.

Table 3. CVI and CVR of each question.

Incorporating the CVR approach, we assessed the number of raters considering an item as essential. While the overall content validity score was optimal (CVR = 0.933), a low CVR score for some questions indicated potential clarity issues.

CVI results

Twenty-two items had I-CVI of 1 while 8 had I-CVI of 0.875. S-CVI/U came out to be 0.733 and S-CVI/Average came out as 0.966. The universal agreement was moderate while the Average agreement was high. represents CVI of each item.

Cognitive interview results

It was administered on 10 cancer survivors. The results of the cognitive interviews underscore the questionnaire’s robust validity, as every item was consistently rated as “no revision needed” by all participants. This unanimity among respondents, with no items graded as unclear, indicates a high level of clarity and effectiveness in the survey questions. It’s important to emphasize that this outcome is a significant strength of the questionnaire, confirming its suitability for your research.

Kappa for inter-rater agreement/reliability

Kappa values above 0.74 are considered excellent, values between 0.60 and 0.74 are considered good, and values between 0.40 and 0.59 are considered fair [Citation22]. This addition of the kappa statistic helps mitigate the potential inflation of values in estimating content validity. The Kappa value came out to be 0.385 showing a moderate inter-rater agreement. The response of all the 8 raters for each question has been mentioned in .

Table 4. Agreement among 8 raters for each question for calculation of Kappa.

Questionnaire refinement results

The questionnaire underwent revisions to enhance clarity and precision based on feedback from the Delphi Panel and insights gained during the interview process. The updated version is denoted as “Version 2.” The comprehensive questionnaire both initial and final version can be found in Online Appendix 2 and 3, respectively, for reference. outlines the specific modifications made to the questionnaire items.

Table 5. Questionnaire refinement results.

Test–retest reliability of the English version

The test–retest reliability was conducted on a sample of 152 participants [Citation25,Citation26]. The English version questionnaire was administered at two occasions i.e. after first response the second response was recorded after 14 days. In test–retest reliability the Intra-class correlation coefficient was 0.945, lower bound was 0.913, and upper bound was 0.968 at significance level of 0.00. The responses of day 1 and day 14 were compared on Bland–Altman plot (). In the graph the mean is denoted by the solid horizontal line. The green triangle depicts the lower limit and the brown rectangle depicts the upper limit at 95% of confidence interval. The bias was of −0.11, the standard deviation was 1.93, upper limit was 3.68 which was calculated by using the formula “Bias + 1.96* S.D.” and lower limit was −3.91 calculated by using the formula “Bias – 1.96* S.D.”

Figure 1. demonstrates a narrow spread of points, bias close to zero, and relatively close upper and lower limits of agreement. These findings indicate a strong agreement between the day 1 and day 14 measurements in the English version.

Figure 1. demonstrates a narrow spread of points, bias close to zero, and relatively close upper and lower limits of agreement. These findings indicate a strong agreement between the day 1 and day 14 measurements in the English version.

Test–retest reliability of the Hindi version

Based on the recommended population size for test–retest reliability the population for this step was again 152 [Citation25,Citation26] and it was administered on day 1 and day 14 like the English version on Hindi speaking and writing population. The test–retest reliability for the Hindi version came out to be 0.92, lower bound was 0.89, and upper bound was 0.94 at significance level of 0.00. The responses of day 1 and day 14 were compared on Bland–Altman plot (). In the graph the mean is denoted by the solid horizontal line. The green triangle depicts the upper limit and the cross (X) depicts the upper limit at 95% of confidence interval. The bias was of −0.125, the standard deviation was 0.619, upper limit was 1.088 which was calculated by using the formula “Bias + 1.96* S.D.” and lower limit was −1.33 calculated by using the formula “Bias – 1.96* S.D.”

Figure 2. which represents the Hindi version, the spread of points is also close to zero, and the bias is near zero. Notably, the upper and lower limits of agreement in the Hindi version are even narrower than those in the English version. This suggests a stronger level of agreement between day 1 and day 14 measurements in the Hindi version compared to the English version.

Figure 2. which represents the Hindi version, the spread of points is also close to zero, and the bias is near zero. Notably, the upper and lower limits of agreement in the Hindi version are even narrower than those in the English version. This suggests a stronger level of agreement between day 1 and day 14 measurements in the Hindi version compared to the English version.

The Hindi version of the questionnaire is given in Online Appendix 4.

Discussion

In this study, we developed, translated, and rigorously evaluated a questionnaire to assess barriers, knowledge, facilitators, and preferences related to physical exercise in cancer survivors. This questionnaire provides a vital tool to understand the factors affecting physical activity engagement in this population, which often struggles with exercise adherence [Citation27–31]. Our aim is to uncover these dynamics and enable personalized interventions to increase participation rates among cancer survivors.

Our study’s demographic data align with typical cancer survivor profiles: an average age of 57 years [Citation32] and 73% female representation, reflecting broader trends among Indian cancer survivors, reinforcing the relevance of our findings [Citation33].

Our study found diverse cancer types: breast (38%), prostate (3.9%), cervical (3.38%), and others (22%). Demographic analysis, covering gender, age, and cancer type, aligned with national statistics. Among women, breast (28.8%), cervix (10.6%), ovary (6.2%), corpus uteri (3.7%), and lung (3.7%) were prevalent; for men, lung (10.6%), mouth (8.4%), prostate (6.1%), tongue (5.9%), and stomach (4.8%) [Citation34]. Our participants’ average age (57 years) and female representation match national data. The distribution of breast cancer (38%) and other types (22%) in our study aligns with national patterns, strengthening our findings’ generalizability [Citation32–34].

Physical exercises are considered beneficial for cancer survivors, yet participation remains low [Citation27–31]. This underscores the need for targeted interventions addressing specific barriers. By utilizing the questionnaire developed in this study, researchers and healthcare professionals can identify facilitators, barriers, and personal preferences of cancer survivors, enabling tailored exercise programs and increased participation.

This study’s strengths lie in its comprehensive approach to questionnaire development, translation, and psychometric evaluation. Our study serves as a vital step toward improving the well-being of cancer survivors by equipping researchers and healthcare professionals with a powerful tool to better understand and address the complexities surrounding physical activity engagement in this population.

Limitations and future directions

Despite the rigorous development and evaluation process, several limitations of this study should be acknowledged. The study’s sample primarily came from two healthcare centers, potentially limiting generalizability. Self-reported data may introduce recall and social desirability biases. Future research should diversify samples and consider objective measures. The questionnaire focused on knowledge, barriers, facilitators, and preferences, not actual activity levels or adherence, warranting future exploration.

Conclusion

In conclusion, our questionnaire, focusing on exercise barriers, knowledge, facilitators, and preferences for cancer survivors, offers valuable insights. Rigorous content validity assessment underlines its reliability and relevance. By identifying exercise participation factors, it aids tailored interventions to promote physical activity and enhance cancer survivors’ well-being.

Trial registration

Clinical Trials Registry India identifier: CTRI/2019/07/020212.

Acknowledgements

We are really thankful to Dr Harda Shah, Dr Satish, Dr Vincent Parmanandam, Dr Sundar Kumar, and Dr Stephen Samuel for their guidance and support throughout the study.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author, [JS], upon reasonable request and based on the purpose of usage.

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