Original Research••

Knowledge and attitude on childhood cancer survivorship among healthcare trainees: a multicentre study from India

Abstract

Background The proportion of childhood cancer survivors (CCS) in low/middle-income countries (LMICs) is rising. CCS often develop several physical and psycho-social long-term adverse effects, with unique healthcare needs. Primary healthcare providers (primary care physicians (PCPs)), especially in LMICs, are often not equipped to handle survivorship care. This study aimed to assess knowledge, and attitude among trainee healthcare providers concerning major issues of paediatric survivorship care.

Methods A multi-centre, cross-sectional, questionnaire-based study was conducted among nursing and medical undergraduate students, and postgraduate medical residents across three tertiary-care teaching hospitals in India—All India Institute of Medical Sciences, New Delhi; Jawaharlal Institute of Postgraduate Medical Education and Research, Puducherry; and Maulana Azad Medical College, New Delhi. A questionnaire with total of 24 questions (14 knowledge-based and 10 attitude-based) was finalised after validation by expert review and piloting. The major domains covered in the questionnaire included knowledge and attitude regarding long-term adverse effects and psychosocial, employment-related issues faced by the survivors. It was administered to the study participants electronically. The knowledge-based questions had true/false responses (scored as 0 or 1 if incorrect or correct, respectively). Attitude-based questions were scored as 5-point Likert scale.

Results Total 898 responses were collected (median age: 21 years, 64% (576/898) female). Among the respondents, 44% were undergraduate medical students, 42% were nursing students and 14% were postgraduate medical residents. The mean (SD) of knowledge score was 8.72 (2.04) (out of 14). On multivariable analysis, only discipline of training predicted knowledge scores regarding survivorship care. Postgraduate medical residents (9.08) as well as undergraduate medical students (8.85), had significantly higher mean knowledge scores than nursing students (8.47) (p=0.004).

Two questions were answered incorrectly by the majority; children and siblings of CCS need additional genetic screening (79% incorrectly answered true), and CCS face intimacy issues in relation to normal sexual functioning (59% incorrectly answered false).

Nearly half (48%) of respondents believed that their knowledge of cancer survivorship issues was inadequate. Majority of respondents (84%) suggested that oncologists should handle long-term survivorship care rather than PCPs.

Conclusion Trainee healthcare providers in India reported inadequate knowledge regarding survivorship care. Improving awareness by incorporating survivorship in teaching curriculum is imperative to equip future PCPs to provide survivorship care across the country.

What is already known on this topic

  • Childhood cancer survivors often develop physical and psychosocial long-term effects, with their own unique and specialised healthcare needs.

  • In India, trainee healthcare providers and nursing students often lack sufficient training in cancer survivorship care, possibly resulting in knowledge gaps on this subject.

What this study adds

  • The study identified that trainee healthcare providers (undergraduate medical and nursing students, and postgraduate medical residents), report inadequate knowledge regarding cancer survivorship issues. Majority also believe that oncologists should handle long-term survivorship care rather than primary care physicians.

  • Only discipline of training of respondents predicted knowledge regarding survivorship care, regardless of location of centre or presence of regional cancer centre in the institute. This underscores the importance of incorporating formal training on survivorship in the teaching curriculum for all students.

How this study might affect research, practice or policy

  • Training on childhood cancer survivorship should be incorporated into the standard medical education curriculum in India to enhance the quality of cancer survivorship care at primary care level.

Introduction

Childhood cancer is highly curable, with over 80% of children diagnosed with cancer becoming long-term survivors.1 Although survival rates have been inferior in low/middle-income countries (LMICs) including India, the proportion of long-term survivors has been steadily improving with time along with improvements in healthcare access.2 Thus, there is a growing need for healthcare systems in LMICs to cater to unique needs of this special and growing population.

The spectrum of late adverse effects following the treatment of childhood cancer is well documented. It has been shown that over a third of childhood cancer survivors (CCS) experience long-term adverse effects.3 4 The problems include subsequent neoplasms, transfusion-transmitted infections, endocrine dysfunction, infertility, metabolic syndrome and neurocognitive impairment, among others. In comparison to the normal population, this cohort has risk of excess mortality which persists even after 40 years of diagnosis.5 6 CCS may have poor psychosocial well-being after treatment.7 CCS may be less likely to complete education, secure gainful employment, marry and have children of their own than the general population.8 9 The impact of substance use, including smoking and alcohol consumption may be greater in this cohort, which is already at a higher risk of cardiovascular problems.10

Even though these risks are well-established, most young adult survivors of childhood cancer rarely receive medical care focused on these late effects.11 The survivorship care provisions in tertiary care oncology centres are often hampered by lack of resources and loss of follow-up among survivors. Similarly, survivorship care at primary healthcare level is impeded by lack of awareness and training among primary health practitioners.12 International studies on medical undergraduates and oncology fellows have reported a lack of knowledge and a high prevalence of misconceptions regarding key cancer survivorship issues.13 However, most healthcare providers expressed interest in knowing more, and small interventions in education have been shown to bring objective success.14 Greater confidence in the primary care providers’ abilities to address issues faced by CCS is believed to be a significant facilitator for those survivors seeking care for health issues that emerge.15 Similarly, a discussion of these issues with one’s doctor has also been noted to impact survivor participation in screening for and timely identification of such issues.16

In India, cancer survivorship care is not part of the formal training curriculum provided to healthcare workers, including undergraduate and residency training for doctors and nurses.17 Since India has only 2000 oncologists for every 10 million patients with cancer, it is vital to build skills and knowledge and engage primary healthcare providers in survivorship care.18 Our study seeks to assess knowledge, and attitude, among undergraduate medical students, nursing students and medical residents concerning the major issues related to childhood cancer survivorship care in different tertiary care centres across India.

Methods

Study design

A multi-centre, cross-sectional, questionnaire-based study was conducted from June 2022 to July 2023 among nursing and medical undergraduates, and postgraduate medical residents obtaining formal training across three tertiary-care teaching hospitals in India—All India Institute of Medical Sciences (AIIMS), New Delhi (coordinating centre); Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry and Maulana Azad Medical College (MAMC), New Delhi. Of the three participating centres, the first two have regional cancer centres providing specialised training in medical and/or paediatric oncology. Two centres were located in North India (New Delhi), and the third in South India (Puducherry).

Study objectives

The primary objective of the study was to assess the knowledge of healthcare trainees from the three tertiary care healthcare centres regarding paediatric cancer survivorship care. The secondary objectives included the assessment of attitude of participants regarding survivorship issues, and to correlate the knowledge and attitude according to their demographic characteristics, place and discipline of training.

Sample size and sampling procedure

In a previous study assessing the knowledge of medical students in the USA, 57% of medical students reported having been exposed to guidelines about survivorship care.19 Considering similar estimations of the prevalence of adequate knowledge of survivorship care among trainee healthcare providers in India as well, with an alpha error of 5% and an absolute precision of 5%, it was estimated that 376 trainee healthcare providers needed to be recruited in the study to demonstrate similar prevalence of knowledge regarding survivorship care. Since there may be significant variation in medical education globally, the prevalence of knowledge among participants was revisited post-piloting. This was found to be within 10% of the estimate as observed among medical students in the USA, and thus, no change in sample size was considered after piloting. For administration of survey, we performed convenience sampling at the three centres based on their willingness to participate with a plan to recruit at least minimum of 376 respondents.

Development of questionnaire and piloting

The study was conducted in two phases (figure 1). In the piloting phase (June 2022 to December 2022), items were pooled and drafted; face validity was tested by the Delphi process by an eight-membered panel, and piloting was done. In the second phase (January 2023 to June 2023) of the study, participants were recruited for the collection of data, questionnaires were administered and the results were compiled.

Figure 1
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Figure 1

Development of study questionnaire and overall study flow. (A) Pooling of items, item reduction, finalisation of questionnaire (K=knowledge-based questions; A=attitude-based questions); (B) overall study flow, phase I includes validity assessment and piloting and phase II includes administration of final questionnaire. PG, postgraduate.

Pooling of items

The pooling of items relevant to various issues faced by CCS was done by extensive literature review for existing measures/questionnaires, and interviews conducted with investigators, caregivers and oncologists.

All relevant items were pooled and duplicate items were removed by consensus. The items were framed into simple sentences in the English language. A preliminary questionnaire consisting of respondent details and 24 questions (14 for knowledge domain and 10 for attitude domain) was designed based on the issues identified. The knowledge-related questions were closed ended and were scored as 0 or 1 for incorrect and correct responses, respectively. A cumulative total of these was assigned as knowledge score (maximum score 14). For the attitude-related questions, the responses were presented on a scale from 1 to 5 Likert scale.

Expert review

The face and content validity of the questionnaire was tested by the Delphi process in consultation with eight experts, including all stakeholders—a paediatric oncologist, an oncology resident doctor, a community medicine expert, a clinical psychologist, two CCS and two caregivers of survivors. They were approached to comment independently on the clarity, relevance and comprehensiveness of the questionnaire on a 5-point Likert scale. Items with an average score of more than 70% were included in the study, and some questions were rephrased based on the comments and suggestions of the experts (figure 1).

Piloting

The questionnaire was pilot tested among 60 participants of the coordinating centre. Participants fulfilling the inclusion criteria were selected purposefully for piloting including 20 medical resident doctors (10 from preclinical/paraclinical departments and 10 from clinical departments), 30 undergraduate medical students (10 from preclinical years, 10 from clinical years and 10 interns, which is the final year of practical training in undergraduate medical curriculum in India) and 10 undergraduate nursing students. Each participant was asked to score on the relevance and clarity of each item. The time taken to complete the questionnaire was also recorded for each participant.

Administration of questionnaire

Based on piloting, items were finalised, and the finalised questionnaire was prepared using Google Forms (online supplemental document 1). In India, the medium of instruction for medical education is English, and thus, the questionnaire was not translated in any other regional language. The questionnaire informed the participants of the use of their responses for our study. The first section collected demographic details including age, sex and discipline of training of the participants, along with details regarding presence of medical professionals in immediate family or familiarity with any CCS. The following sections contain questions assessing knowledge and attitudes about cancer survivorship issues. Participants were recruited by convenience sampling on a voluntary basis, with no incentives provided. The questionnaire was disseminated simultaneously across the three centres by electronic means, and responses were recorded. No identifying information was collected in the questionnaire. Participants of piloting phase were not included in the final survey.

Patient and public involvement statement

During the study design and development of the questionnaire, two CCS and two caregivers of distinct survivors were included in the panel for expert review of the instrument for their inputs regarding drafting of items. There was no other involvement of patients or survivors in other parts of the conduct of the study. The results of the study and correct responses to the knowledge-based questions of the survey are planned to be disseminated to all study participants electronically.

Statistical analysis

R V.4.3.1 (R Studio) was used for statistical analysis. Descriptive statistics was used to represent proportions, means, and SD, or medians and IQRs. The knowledge of the participants was presented as cumulative knowledge score (out of 14) and the proportion of respondents scoring more than 50% (7/14) was additionally presented. For between-group comparisons of continuous or ordinal variables, the Kruskal-Wallis rank sum test and two-way analysis of variance were used. For comparisons of categorical variables, Pearson’s χ2 test was used. In addition, univariable and multivariable linear regression was performed to assess the effect of demographic parameters on knowledge scores. Multivariable linear regression analysis was done by including all variables with p<0.10 in the univariable analysis in a forward stepwise manner, and variables with p<0.05 were considered significant. Subgroup analyses were performed based on the location of college of the participants, and the presence of a regional cancer centre in the institute. Ordinal logistic regression was performed to assess whether knowledge scores of the respondents predicted the attitude of individual questions and reported with proportional OR with p value. Brant test was used to check assumption of parallel-lines model for each ordinal regression model.

Results

Piloting

In the piloting phase of the study, a total of 60 responses were collected from participants of AIIMS, Delhi. The clarity and relevance as assessed by a 5-point Likert scale were found to be greater than 70% for all questions. The mean knowledge score was 9.57 out of a maximum score of 14, and the median score was 10. The median time required to complete the questionnaire was 6 min (online supplemental table S1). Following piloting, the questionnaire was finalised with total of 24 questions (14 questions pertaining to knowledge domain and 10 questions pertaining to attitude domain).

Baseline demographics

In the final survey, total of 898 responses (576 from female respondents, 64%) were collected across the three centres. The characteristics of the study population is summarised in table 1. Total 235 (26.1%) responses were collected from AIIMS, New Delhi, 426 (47.4%) from JIPMER, Puducherry and 237 (26.4%) from MAMC, New Delhi. The median (IQR) age of the respondents was 21 years (19–22). About 44% (398) of the respondents were undergraduate medical students, 42% (373) were undergraduate nursing students, and the rest 14% (127) were postgraduate medical residents. Very few (6.6%, 59) of the participants had familiarity with a cancer survivor in their family, while 46% (416) of them had a healthcare professional (doctor or a nurse) in their immediate family.

Table 1
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Baseline demographic characteristics of participants

Knowledge regarding survivorship issues

The mean (SD) knowledge score among our participants was 8.72 (2.04) out of a maximum score of 14, with 665 (74%) respondents scoring more than 50%. The mean (SD) score was higher in undergraduate medical students and postgraduate medical residents at 8.85 (2.08) and 9.08 (2.43), respectively, while in nursing students it was 8.47 (1.81) (p=0.007). The mean knowledge scores across the three centres are represented in figure 2.

Figure 2
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Figure 2

Distribution of knowledge scores across (A) discipline of training of the respondents (MBBS=undergraduate medical students; BSc Nursing=undergraduate nursing students; postgraduate (MD/MS)=postgraduate medical residents; (B) individual study centres; (C) location of centres (North India vs South India); (D) presence of regional cancer centre at the respective institutes. AIIMS, All India Institute of Medical Sciences; JIPMER, Jawaharlal Institute of Post-Graduate Medical Education and Research; MAMC, Maulana Azad Medical College.

The descriptive analysis of the knowledge scores in different subgroups is mentioned in table 2 and the responses to individual questions are mentioned in online supplemental table S2. The most frequently incorrectly answered questions included: ‘Children and siblings of CCS need genetic counselling and additional screening as a majority of childhood cancers are heritable’ (79% incorrectly true) and ‘CCS may face intimacy issues in relation to normal sexual functioning’ (59% incorrectly answered false). The most frequently correctly answered questions included: ‘CCS have an increased risk of developing psychiatric issues like depression, stress and anxiety, for which they require additional screening’ (89% correctly answered true) and ‘Radiotherapy to the brain may cause long term neurocognitive deficits in survivors’ (83% correctly answered true) (online supplemental table S2).

Table 2
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Knowledge scores in the survey respondents across different demographic groups overall and individual centres (total score=14)

Predictors of knowledge scores

On univariable linear regression, it was observed that male respondents had a significantly better mean knowledge score as compared with female respondents (8.92 vs 8.62; β=0.3, p=0.036). The mean score of postgraduate medical residents (9.08; β=0.61, p=0.004) and undergraduate medical students (8.85, β=0.38, p=0.009) were significantly better than undergraduate nursing students (8.47). On multivariable analysis, only discipline of training predicted knowledge scores with postgraduate medical residents and undergraduate medical students had significantly higher knowledge scores than undergraduate nursing students (p=0.004) (table 3). The proportion of respondents scoring more than 50% (7/14) did not different significantly across any groups (online supplemental table S3).

Table 3
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Univariable and multivariable analyses for predictors of knowledge scores

Attitude regarding survivorship issues

The descriptive analyses of the responses of participants on the questions pertaining to attitude domain is summarised in figure 3 and online supplemental table S4. The majority (84%) of participants believed that a childhood cancer survivor should follow-up with an oncologist for their long-term healthcare rather than a primary care physician (PCP).

Figure 3
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Figure 3

Proportion of responses to individual attitude-based questions among the whole group of respondents.

While a majority (84%) agreed that the history of cancer in childhood should be revealed to prospective partners before marriage, only 27% believed that the history of childhood cancer should be disclosed to potential/current employer. Only a minority (26%) of the participants agreed that the insurance companies are justified in denying/charging higher premiums for health insurance for CCS while the majority disagreed (47%). The majority of respondents disagreed with the notion that CCS are unlikely to succeed in occupation requiring intensive physical activity (61%) or intellectually demanding career (82%) (online supplemental table S4).

A significant proportion (48%) of respondents felt that their knowledge about childhood cancer survivorship issues is inadequate, while 24% felt confident about their knowledge, and another 28% were neutral. Regarding their belief on whether exposure regarding childhood cancer survivorship care in the existing curriculum was adequate, 35% agreed, 39% disagreed and 26% were neutral (online supplemental table S4).

Correlation of knowledge score with attitude of respondents

The correlation of knowledge score with the response category of individual attitude-based questions are reported in online supplemental figure S1 and table S5. The knowledge score of the respondents did not predict self-reported adequacy of knowledge regarding survivorship care (p=0.67); although, respondents with higher knowledge score are more likely to disagree that the exposure of survivorship care is adequate in the existing curriculum (p=0.018). The respondents with higher knowledge score were more likely to agree that CCS are unlikely to succeed in physically strenuous job (p<0.001). They are also more likely to believe that history of childhood cancer should be disclosed to younger children when they grow up (p=0.007) and also to prospective partners of survivors before marriage (p=0.007).

Discussion

In our study, the mean knowledge score was 8.72 out of 14 questions (62.3%), with nursing students scoring lower than medical students and postgraduate medical residents. Cancer survivorship in medical teaching curriculum is not a very well-explored area, with only a few studies available for comparison of our findings. In a similar study by Uijtdehaage et al, senior medical students answered on average 56% of the questions correctly compared with a mean score of 67% for oncology fellows.19 In a study conducted in Nigeria to assess the undergraduate curriculum related to oncology, only 52% of the final year medical students reported exposure through lectures of cancer survivorship, which were much less than other the categories (medical oncology (85%), radiation oncology (82%), and surgical oncology (85%), hospice care (75%), and the students were ‘somewhat comfortable’ with survivorship when asked on a Likert scale.20 Even paediatric oncologists did not answer questions correctly (24%–43%) based on various surveillance in a survey by Henderson et al.21 Although heterogeneity among questionnaires precludes direct comparison, the available literature highlights that there is a noticeable gap in knowledge on survivorship issues in medical education.

Interestingly, we observed that the most frequent incorrectly answered questions were on the topics of need for genetic counselling and additional screening, and survivors facing intimacy issues, similar to what was seen in the study by Uijtdehaage et al, where the test-takers scored negative marks on average in the section pertaining to long term consequences of cancer, which included questions on fertility and sexual functioning.19 This suggests that issues related to fertility, sexual intimacy issues among survivors and knowledge about heritability of cancers needs more focus in teaching curriculums.

The comparatively lower knowledge score observed among the nursing students, emphasises the unmet need for survivorship education in the teaching curriculum of nursing education as well. It has been frequently shown that involving nurse practitioners along with the primary care provider leads to greater efficiency of work, positive health outcomes and higher patient satisfaction.22 In India, the role of nurse practitioners is less well-developed in comparison to the Western countries, possibly accounting for the difference.23

No significant differences were observed due to different regions (North vs South India) or the presence/absence of a regional cancer centre. The presence of a doctor in the family and even personal familiarity with a cancer survivor did not affect the knowledge scores in this study highlighting that this topic is seldom discussed as part of general health and wellness. This highlights the necessity of formal training in these topics in the regular curriculum of the students rather than relying on experiential learning.

Opinions were also split about exposure to childhood cancer care and the adequacy of knowledge on long-term cancer survivorship. Respondents with higher knowledge score are more likely to believe that their exposure on survivorship issues in existing curriculum is inadequate. This indicates that imparting better knowledge may make the test takers aware of the importance and inadequacy of coverage of survivorship care in the curriculum. Exposure to patients with cancer and cancer survivors, both recent and long-term, must be present as a part of the regular curriculum, in addition to the theoretical teaching of related topics. This perhaps suggest that higher knowledge The majority of the participants believe that the onus of long-term healthcare follow-up of a survivor resides with the oncologist, and not a PCP. While this may indicate the current status of a family practitioner in India, this kind of approach leads to overburdening of the oncologists and improper utilisation of the resources at hand. The belief that PCPs may not be ideal for follow-up can be changed only if skill-building is done at an early level. Following up with a local PCP may improve compliance and reduce treatment costs, thus reducing morbidity and improving outcomes of care. If required, shared models of care can be established where both, the treating oncologist and the PCP, take care of the long-term follow-up, as is also being done in oncological management.24 However, establishment of proper communication is imperative for smooth transition and coordination of care.14 25

The general consensus among test takers is that cancer survivors should reveal their past history to their prospective marriage partners, and that they should pursue intellectually demanding careers, however, the opinion of revealing the history of childhood cancer to their employers is split. This suggests a lingering stigma and fear of judgement regarding a cancer diagnosis in childhood. Studies show that people might want to have a sense of normalcy and a non-judgmental work environment, and hence may prefer not revealing it to their employers.26 However, revealing the diagnosis can help the employer in accommodating the needs of the survivor.27 We also observed that higher knowledge score may translate into less stigma as respondents with higher knowledge scores are more likely to agree that history of childhood cancer should be disclosed to younger children themselves and prospective partners of survivors before marriage.

To the best of our knowledge, this is the largest multi-centre study that comprehensively assesses the knowledge and attitude regarding cancer survivorship among trainee healthcare providers from India. Our study was limited by use of only quantitative methods to assess knowledge and attitude. However, a mixed methods study involving focus group discussions would enhance our qualitative knowledge in this domain, especially the issues related to attitude on survivorship care. Comparatively less proportion of responses were obtained from medical residents. Additionally, the availability of a comparator group of oncology practitioners may allow us to gain a stronger comparison about the nature of survivorship care knowledge among different healthcare training disciplines in the country.

Conclusion

In conclusion, trainee healthcare providers and nursing students in India do not receive adequate training about cancer survivorship care, and thus have deficits in knowledge on the topic. The majority believed oncologists should handle long-term survivor care, potentially increasing the need for tertiary centre visits and costs of care. This calls for incorporation of a cancer survivorship training module in the regular education curriculum among trainee healthcare providers to equip future family practitioners and nurse practitioners to provide shared survivorship care across the country.

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