This study aims to establish a scale to measure the unmet psychosocial needs of AYAs diagnosed with cancer and to evaluate its psychometric properties [19]. The scale was constructed from existing tools: the CNQ-YP and le NA-SB [16, 18]. The CNQ is a validated questionnaire covering a broad timeframe for evaluation of needs during and after treatment, but does not include the sexual dimension of needs. This dimension is, however, reported as important by AYAs [20, 21]. The NA-SB, derived from the CNQ-YP, asks more exhaustively about psychosocial needs but without distinguishing their timeframe; it has not been psychometrically validated. Moreover, neither of the two scales has been validated in French.
The questionnaire initially offered in our study is very close to the structure of the NA-SB with the same number of questions covering 9 dimensions. The headings, the timeframes and the form of the responses were, however, adapted on the basis of the CNQ-YP.
The final structure of our questionnaire has 7 dimensions with 48 items: Information (8 items), Cancer Care Team (6 items), Physical Health (4 items), Psychological Health (14 items), Sexual and Reproductive Health (6 items), Health Behaviours and Wellness (4 items) and Daily Life (6 items).
First, the “Work and education” dimension of the NA-SB was not retained because, for each of the two items it contains, the load was much smaller than the chosen criterion (> 0.4), with even a negative loading. This is explained by the fact that the dimension contains only two items, which are moreover mutually exclusive (a person in education is not in work). In the NA-SB questionnaire, education and work are two different dimensions. We therefore recommend the development of a module adapted to educational specificities on the hand and vocational ones on the other [27] so as to explore these two dimensions.
Adjustments induced by the floor effects
The questions on “information about smoking and alcohol” show respectively 76% and 83% absence of needs and were therefore removed from the final questionnaire. These high results are probably due to the “feeling of being informed” found among 15 to 30-year-olds [28]. The impact of awareness-raising campaigns in the hospital and more generally by the public authorities contributes to the diffusion of information on these topics [29].
Likewise, the question on “loss of walking ability” gives 72% “No need” or “Low need” answers, suggesting that this symptom is very infrequent in the treatment phase and is not a consequence of the treatments. This item was therefore also removed from the final version of the questionnaire.
Likewise, the questions on “Help with housing” and “Help with childcare” had respectively 83% and 87% “No need” or “Low need” answers and were removed. It is important to note that, in France, one in two 18 to 29-year-olds still live with their parents [30] and in 2022 the average age of giving birth was 31 [31], which probably explains the lack of needs declared by this AYA population.
Adjustments induced by the loadings
We observed that the items “Worrying about my cancer spreading” and “Worrying about my cancer returning” were strongly correlated, and therefore supplied redundant information. The distinction between recurrence and spread may indeed be vague for patients. We therefore retained only one of the two items in the final questionnaire, the one with the greater loading. Likewise, the item “Participating in social activities” was strongly correlated with “Being able to spend time with people my own age”, which is explained by the fact that social activities in the AYA population are often done with people of the same age. We again retained only one item, the one with the higher loading in the factor analysis.
Finally, the item “How my genetics may or may not have impacted my diagnosis and treatment” in the dimension “Information” was retained despite its weak loading in the exploratory factor analysis. Despite a loading of < 0.4, we observe a high rate of needs expressed (54% high or very high need), which suggests that the question of the genetic aspects of the disease is a matter of concern for AYAs and deserves to be retained in the questionnaire.
Adjustments induced by the exploratory factor analysis.
Finally, some items were moved to another dimension after the exploratory factor analysis. Thus, the question on “Finding information on alternative therapies (herbal treatment, acupuncture, massage therapy, meditation, etc.)”, initially contained in the category “Health and wellness” was moved to the “Emotional health” dimension because of a greater loading in the latter. This shift seemed to belong to a logic of provision of these alternative treatments in the treatment of the psychological consequences of a cancer [32].
Similarly, the question on “Having what I need to cope with my diagnosis”, initially placed in the “Psychological consequences” was moved to the dimension “Sexual and reproductive health”. The interest of including this item in the “Sexual health” dimension is that it makes it possible to evaluate the need bring in specific support to meet these needs. It will also make it possible to refine understanding of this dimension which is recurrently mentioned by patients in the literature.
Acceptability of the questionnaire
In our study, the rate of response to the questionnaire (number of questionnaires completed and returned / number of questionnaires distributed) is 17.85%. This is low relative to the rates commonly reported in the literature – between 40% and 50% – in a general way and relative to those for the validation of the CNQ-YP [16]. This can be explained by the difference in how the questionnaire was distributed. For the validation of the CNQ-YP[16], 577 AYAs were identified and contacted, first with a preliminary request for consent, then with the questionnaire and the material for answering it. The rate of response was therefore calculated by reference to the number of patients having returned the consent form.
In our study, the link to the online questionnaire completion was sent by email and returning the questionnaire was considered as giving informed consent. Our rate of response was therefore based on the number of patients contacted and not on the number of patient giving consent, which explains our lower response rate.
However, it is important to note that 96 responses out of 103 had no missing data, which suggests that the questions are clear and easy to understand and that the questionnaire is easy to complete. This good acceptability of the questionnaire needs to be confirmed for the modified final version in a later confirmatory study.
Limitations of the study
The first limitation is that this a single-centre study. It was conducted in a Cancer Centre that only admits AYAs from the age of 18, thereby excluding AYAs aged 16 to 18. However, this is not a real limitation on the use of the present questionnaire to evaluate the needs of 16 to 18 year-olds inasmuch as the literature mentions similar needs regardless of age, especially concerning relational and psychological aspects [19] and sexual aspects [33].
Secondly, for regulatory reasons, we were not able to conduct a test-retest. The difficulties of recruiting from this population of AYAs into clinical trials [34, 35] led us to choose a method for collection of consent/distribution of questionnaire/collection of responses which requires the patients’ responses to be anonymized, which in turn prevents a retest.
Finally, this study has a restricted sample of respondents. Only 103 patients completed the questionnaire out of 577 contacted by email. Other studies moving toward development of measuring tools for this population have obtained similar results in their recruitment [36, 16, 37].
Practical applications
The present questionnaire is a multidimensional measure of unmet needs adapted to the specificities of French AYAs (aged 18–30). The structure of this tool was designed so as to facilitate its everyday use in the AYA care departments and help to improve care coordination. Easier and more systematic evaluation of patients’ needs by the caring departments throughout the care pathway should allow more clearly identified referral to adapted support and best meet the patients’ needs. The questionnaire is also designed to evaluate patients’ information needs on sexual aspects and so fills a gap noted in the literature [38]. With improved understanding of the information that patients lack, the care professionals will be able to target the information to be provided and so prevent certain aberrations, particularly with regard to the exclusive use of non-conventional treatments [39].