# Construction and validation of a tool for measuring the needs of adolescents and young adults (AYAs) diagnosed with cancer: the Questionnaire nEEd Cancer AYAs : QUEEC-AYAs

S. Justafré (✉ sebastien.justafre@univ-amu.fr)

Management Sport Cancer Laboratory UR20122035V, Aix Marseille University and Paoli Calmettes Institute, Marseille, France

P. Marino

Institut Paoli-Calmettes, Aix-Marseille Univ, IRD, SESSTIM

R. Touzani

Institut Paoli-Calmettes, Aix-Marseille Univ, IRD, SESSTIM

F. Dupeyre-Alvarez

Paoli Calmettes Institute

P. Dantin

Management Sport Cancer Laboratory UR20122035V, Aix Marseille University and Paoli Calmettes Institute, Marseille, France

P. Viens

Management Sport Cancer Laboratory UR20122035V, Aix Marseille University and Paoli Calmettes Institute, Marseille, France

N. Vey

Paoli Calmettes Institute

S. Calvin

Management Sport Cancer Laboratory UR20122035V, Aix Marseille University and Paoli Calmettes Institute, Marseille, France

## Research Article

**Keywords:** Adolescents and young adults, cancer, Needs, Patient-reported outcome measures

**Posted Date:** April 25th, 2023

**DOI:** https://doi.org/10.21203/rs.3.rs-2835484/v1

**License:** This work is licensed under a Creative Commons Attribution 4.0 International License. Read Full License
**Abstract**

**Context:** In France, 2300 adolescents and young adults (AYAs, 16-25 years old) are diagnosed with cancer each year. As soon as the disease is diagnosed, a number of physical, psychological and social needs may arise. The aim of this study is to develop a tool to measure unmet needs that will allow the specificities of AYAs to be understood while allowing health care staff to mobilise the necessary actors to resolve them.

**Methods:** We developed the Questionnaire nEEd Cancer AYAs (QUEEC-AYAs questionnaire), from two existing questionnaires: the Cancer Needs Questionnaire Young People and the Needs Assessment & Service Bridge. A main sample of 103 AYAs then received and completed the questionnaire in order to conduct an exploratory factor analysis.

**Results:** The final structure of the QUEEC-AYAs is composed of 7 dimensions and 48 items: information (8 items), cancer care team (6 items), Physical health (4 items), Emotional health (14 items), Sexual & reproductive health (6 items), Health behaviors & wellness (4 items), Daily life (6 items). The questionnaire has a good acceptability and all domains have a Cronbach's alpha value above 0.80.

**Conclusion:** The QUEEC-AYAs is the first measure of the psychosocial needs of AYAs available in French. Its systematic use in health care services should improve the coordination of care required by AYAs during and after treatment.

**Trial registration:** This study was approved by the ethics committee of the Paoli-Calmettes Institute (IRB # IPC 2021-041, 2021 May 20).

**Background**

It is now well established that a cancer diagnosis has many emotional consequences: shock, incredulity and distress at the news [1, 2]. It brings out in patients a number of physical, psychological and social needs that can impact their quality of life [3, 4] after the diagnosis and can persist beyond the end of treatment [5].

Among patients diagnosed with cancer, the population of adolescents and young adults (AYAs) suffers from a lack of clinical studies and services adapted to their needs. Each year in France, 2,300 AYAs are diagnosed with cancer [6]. This population of young patients is habitually defined by the diagnosis of a tumour in an individual aged 15 to 25 [7], although some international studies extend the upper age to 29 or even 39 [8, 9].

However, AYAs are a particular population whose enrolment in clinical trials remains low relative to the adult and paediatric populations and whose barriers and facilitators to enrolment may differ from those of other age groups [10–12]. Moreover, this inadequate integration of AYAs in studies makes the improvement of results regarding survival weaker than those obtained among child and adult populations [13].

To understand as well as possible the needs of these patients, the use of patient-reported outcome measures (PROMs, PREMs) is now widely recognized in the literature [14, 15].

In 2012, Clinton-McHarg and her team developed the first multidimensional scale evaluating the unmet needs of AYAs with cancer: the CNQ-YP [16]. This questionnaire does not seem to have been used in international clinical practice, for reasons of time, staff training, and the length and complexity of the tool for the respondents[17, 18]. Based on this questionnaire, an American team developed a tool for coordination and delivery of support, the NA-SB, derived from the CNQ-YP, whose length and ergonomics were improved. This new questionnaire includes a dimension on sexual needs little explored in the CNQ-YP [18]. Moreover, the categories of the questionnaire have been designed in relation with the care and support services so as to quickly identify the person able to respond to the needs. This tool was designed to improve the efficiency of care; it does not have a strong psychometric validation. In addition, the strengths of the CNQ-YP regarding the modalities of responses and the timeframe of responses have not been retained in the NA-SB.
The aim of our study is to create a questionnaire in French whose dimensions will cover the needs mentioned by patients in the literature [19], shedding light in particular on the concerns regarding sexual health that patients report as important [20, 21].

## Material And Methods

In an iterative process, we translated the two questionnaires and presented them to a group of AYAs so as to develop a new tool with solid psychometric properties adapted to French AYAs, combining the strengths of the two initial questionnaires.

## Translation of the CNQ-YP questionnaire

A first stage was to have the questionnaire translated and back-translated by 2 different translators [22, 23]. Then, a scientific board consisting of a nurse specializing in AYAs, a physician in charge of AYAs, adapted physical activity specialists from the Paoli-Calmettes Institute (Regional Comprehensive Cancer Centre, Marseille) and researchers from the Management Sport Cancer laboratory drew up a preliminary version of the translated questionnaire.

## Exchanges and focus groups with AYAs

This version of the CNQ-YP was tested by 7 AYAs aged 18 to 25 in treatment and in remission recruited from the Paoli-Calmettes Institute. The completed questionnaires were collected by the nurse in charge of AYAs and sent to the research team.

The qualitative study of feedback on the questionnaire from the 7 AYAs brought out several aspects regarding, in particular, the excessive length of the questionnaire and the absence of questions on aspects concerning couples and the topics of fertility and sexuality.

## Translation of NA-SB questionnaire

In view of the limitations highlighted by the qualitative analysis of the CNQ-YP, the NA-SB questionnaire was translated according to the same methodology as previously and was sent to the same 7 AYAs who had tested the CNQ-YP. This translated version of the NA-SB questionnaire was completed by 3 of them, who reported that it was clearer and shorter, but criticized the loss of timeframes and the binary options which did not make it possible to express their full needs or their intensity.

## Construction of the new scale

To develop this new scale, we took advantage of the positive aspects identified by the AYAs in their qualitative feedback on the CNQ-YP and the NA-SB. The summary of the items retained from each questionnaire is given in the supplementary table.

The scale proposed in the questionnaire in its final version has 9 dimensions essentially taken over from the NA-SB: Information (8 items), Cancer care team (6 items), Physical health (5 items), Emotional health (15 items), Sexual and reproductive health (5 items), Health behaviours and wellness (7 items), Work and education (2 items), Peer support and programming (3 items), Finances and everyday needs (6 items).

The timeframes of the CNQ-YP questions were retained so as to allow analysis of patients' needs both in treatment and in remission, for up to 5 years after their diagnosis [16]. The 5-point response scale ranging from "No need" to "Very high need" was also taken over from the CNQ-YP.

Finally, the questionnaire has an open-ended part to enable respondents to express needs not mentioned and to optimize the data quality [24].

## Participants

Eligible participants were patients aged 18 to 25 at the time of diagnosis; having been diagnosed with cancer within the last 5 years; not having taken part in the pilot study.

## Data collection
To facilitate delivery and response, the questionnaire was digitized and placed on a secure platform to enable the AYAs to respond online. A link was generated and emailed by the nurse in charge to all the AYAs enrolled as patients at the Institute in the previous 5 years who met the inclusion criteria. Before being able to complete the questionnaire, the AYAs were invited to answer some sociodemographic questions (sex, age group, medical situation, socio-occupational situation, personal situation). Systematic reminder emails were sent 2 weeks, 1 month and 1.5 months after the first contact. Returning the online questionnaire was considered as providing written informed consent to participate.

## Statistical Analysis

Patients' characteristics were reported using usual descriptive statistics (frequencies, means and proportions). Scale items for which > 70% of participants indicated no or low needs were removed. The factor structure of the questionnaire was assessed using exploratory factor analysis (EFA). Extracted factors were orthogonally rotated using the Varimax procedure (Eigenvalue > 1 criteria). Items were included on a factor if they displayed a loading of at least 0.4 on one of the factors. If an item loaded across several factors with similar loadings, it was attributed to the initial factor structure. When redundancy between items was observed (Pearson correlation coefficient r ≥ 0.70), the item retained was the one with the higher loading. A second EFA was carried out after deleting the items correlated and those with low loading. In cases where the loading was less than 0.4, the item was retained if > 50% of participants indicated a high or very high need for the item. Sampling adequacy was assessed measuring the Kaiser-Meyer-Olkin (KMO) [25] test and Bartlett's test of sphericity. A KMO value over 0.5 and a significance level for Bartlett's test (p < 0.05) suggested there was correlation in the data.

Internal consistency was measured by calculating the Cronbach's alpha coefficient for each dimension of the scales. A Cronbach's alpha coefficient ≥ 0.7 was considered satisfactory [26].

For each subscale as well as the global scale, a score was generated by summing all responses (from 0 (no need) to 4 (very high need)). A higher score indicated a higher level of need.

All analyses were performed using STATA version 15 (StataCorp, College Station, TX, USA).

## Results

### Participants

522 AYAs meeting the inclusion criteria were contacted by the nurse responsible for AYAs at the institute and were emailed the link to the questionnaire. After 3 reminder emails sent by the nurse, 103 AYAs completed the questionnaire. The sociodemographic characteristics of the respondents are summarized in Table 1.

<caption>Table 1: Characteristics of patients</caption>
<table><caption>Table 1
Characteristics of patients</caption><thead><tr><th></th><th></th></tr></thead><tbody><tr><td><strong>Sex</strong></td><td></td></tr><tr><td>Female</td><td>65 (63.1%)</td></tr><tr><td>Male</td><td>38 (36.9%)</td></tr><tr><td><strong>Age</strong></td><td></td></tr><tr><td>18-20</td><td>5 (4.9%)</td></tr><tr><td>20-25</td><td>43 (41.7%)</td></tr><tr><td>&gt; 26</td><td>55 (53.4%)</td></tr><tr><td><strong>Management phase</strong></td><td></td></tr><tr><td>In treatment</td><td>21 (20.4%)</td></tr><tr><td>&le; 2 years remission</td><td>46 (44.7%)</td></tr><tr><td>&gt; In remission + 2 years</td><td>36 (35%)</td></tr><tr><td><strong>Socio-occupational status</strong></td><td></td></tr><tr><td>Employed</td><td>51 (49.5%)</td></tr><tr><td>Student</td><td>24 (23.3%)</td></tr><tr><td>Inactive</td><td>28 (27.2%)</td></tr><tr><td><strong>Personal situation</strong></td><td></td></tr><tr><td>Single</td><td>45 (44.1%)</td></tr><tr><td>In couple</td><td>57 (55.9%)</td></tr></tbody></table>

## Exploratory factor analysis

Of the 103 participants completing the questionnaire, 96 had no missing values for any items. No items had > 90% of participants reporting the same level of need, indicating reasonable variability of responses within items. Missing data ranged from 0-2.91% depending on the items.

## First exploratory factor analysis (57-item questionnaire)

In its initial version, the questionnaire included 57 items divided into 9 dimensions. We first conducted a factor analysis on this 57-item version. Following this first analysis, we deleted the dimension "Work and education" consisting of one item related to education needs "I wanted more help with managing my school life while going through cancer treatment" and one item related to work needs "I wanted more help with managing my working life while going through cancer treatment" because for both items loadings were below 0.4. From the 55-remaining items, for 5 items were removed because more than 70% of the patients declared no or minimal needs for these 5 items. These items were: "I wanted more help with managing loss of walking ability; I wanted more information about smoking; I wanted more information about drug or alcohol use; I wanted more help with having childcare during my cancer care appointments; I wanted more help with having stable housing". Assessment of the inter-item Spearman correlation matrix between items revealed that two items "I wanted more help with being able to spend time with people my own age / I wanted more help with participating in social activities", had correlations > 0.90 as well as two items "I wanted more help with worrying about my cancer spreading / I wanted more help with worrying about my cancer returning or getting another type of cancer". The items selected in the scale were those for which the loading was higher.

## Second exploratory factor analysis (revised 48-item questionnaire)
Based on the results of the first analysis, we conducted a second factor analysis on the revised 48-item questionnaire. We found a factor structure with 7 factors. The items and factor loadings corresponding to the 7 extracted factors are presented in Table 2.

<caption>Table 2: Factorial structure of the questionnaire from the exploratory factor analysis (48-item questionnaire)</caption>
<table><caption>Table 2
Factor structure of the questionnaire from the revised factor analysis (48-item questionnaire)</caption><thead><tr><th></th><th>INFORMATION</th><th>Factor1</th><th>Factor2</th><th>Factor3</th><th>Factor4</th><th>Factor5</th><th>Factor6</th><th>Factor7</th></tr></thead><tbody><tr><td>1</td><td>I wanted more information about:</td><td>My cancer diagnosis</td><td>0.705</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>2</td><td></td><td>The short-term side effects of treatment</td><td>0.830</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>3</td><td></td><td>The long-term side effects of treatment</td><td>0.784</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>4</td><td></td><td>What will happen when treatment finishes</td><td>0.720</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>5</td><td></td><td>My disease status</td><td>0.763</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>6</td><td></td><td>My test results</td><td>0.795</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>7</td><td></td><td>What to do if I have side effects from my treatment</td><td>0.777</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>8</td><td></td><td>How my genetics may or may not have impacted my diagnosis and treatment</td><td>0.349</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td colspan="9">CANCER CARE TEAM</td></tr><tr><td>9</td><td>I felt the need for my cancer treatment team to:</td><td>Respect me as an individual, not just a cancer patient</td><td>0.736</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>10</td><td></td><td>Offer to talk to me in private, without my family or friends</td><td>0.520</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>11</td><td></td><td>Explain what they were doing in a way I can understand</td><td>0.745</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>12</td><td></td><td>Encourage me to ask questions</td><td>0.770</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>13</td><td></td><td>Engage me in decision-making about my treatment and respect my decisions</td><td>0.674</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>14</td><td></td><td>Ask me about my treatment concerns</td><td>0.415</td><td>0.634</td><td></td><td></td><td></td><td></td></tr><tr><td colspan="9">PHYSICAL HEALTH</td></tr><tr><td>15</td><td>I wanted more help with:</td><td>Managing pain</td><td>0.640</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>16</td><td></td><td>Managing physical side effects of treatment</td><td>0.694</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>17</td><td></td><td>Managing feeling tired / fatigued</td><td>0.661</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>18</td><td></td><td>Managing loss of walking ability</td><td>0.416</td><td></td><td></td><td></td><td></td><td></td></tr></tbody></table>
<table><thead><tr><th>INFORMATION</th><th>Factor1</th><th>Factor2</th><th>Factor3</th><th>Factor4</th><th>Factor5</th><th>Factor6</th><th>Factor7</th></tr></thead><tbody><tr><td colspan="8">EMOTIONAL HEALTH</td></tr><tr><td>19 I wanted more help with:</td><td>Feeling anxious or scared</td><td>0.586</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>20</td><td>Feeling depressed</td><td>0.620</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>21</td><td>Worrying about my cancer returning or getting another type of cancer</td><td></td><td></td><td>0.424</td><td>0.405</td><td></td><td></td></tr><tr><td>22</td><td>Worrying about how my family is coping</td><td>0.495</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>23</td><td>Coping with changes in my dating or romantic life</td><td>0.454</td><td></td><td></td><td></td><td>0.414</td><td></td></tr><tr><td>24</td><td>Coping with changes in my relationships with my family members</td><td>0.675</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>25</td><td>Coping with changes in my relationships with friends</td><td>0.725</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>26</td><td>Feeling independent</td><td>0.789</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>27</td><td>Coping with changes in my physical ability</td><td>0.667</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>28</td><td>Coping with changes in my appearance</td><td>0.666</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>29</td><td>Coping with not being able to do the same things as other people my age</td><td>0.619</td><td></td><td></td><td>0.404</td><td></td><td></td></tr><tr><td>30</td><td>Managing the emotional side effects of treatment</td><td>0.607</td><td></td><td>0.423</td><td></td><td></td><td></td></tr><tr><td>31</td><td>Being able to make plans or think about the future</td><td>0.763</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td>32</td><td>Entre capable d'avoir des projets ou de penser à l'avenir</td><td>0.643</td><td></td><td></td><td></td><td></td><td></td></tr><tr><td colspan="8">SEXUAL & REPRODUCTIVE HEALTH</td></tr><tr><td>33 I wanted more information about:</td><td>Mes risques d'infertilité et mes solutions pour préserver ma fertilité</td><td></td><td></td><td></td><td>0.683</td><td></td><td></td></tr><tr><td>34</td><td>Le traitement de l'infertilité et les autres solutions pour avoir des enfants plus tard (p. ex. congélation des spermatozoïdes/ovocytes, fertilisation in vitro, etc.)</td><td></td><td></td><td></td><td>0.730</td><td></td><td></td></tr><tr><td>35</td><td>La sexualité et l'intimité pendant le traitement du cancer</td><td></td><td></td><td></td><td>0.750</td><td></td><td></td></tr></tbody></table>
<table><thead><tr><th>INFORMATION</th><th>Factor1</th><th>Factor2</th><th>Factor3</th><th>Factor4</th><th>Factor5</th><th>Factor6</th><th>Factor7</th></tr></thead><tbody><tr><td>36 Les effets secondaires du traitement sur le plan sexuel (p.ex. dysfonction sexuelle)</td><td></td><td></td><td></td><td>0.732</td><td></td><td></td><td></td></tr><tr><td>37 Les effets du traitement sur les changements hormonaux à long terme</td><td>0.494</td><td></td><td></td><td>0.636</td><td></td><td></td><td></td></tr><tr><td colspan="8">HEALTH BEHAVIORS & WELLNESS</td></tr><tr><td>38 I wanted more information about.</td><td>Nutrition</td><td></td><td></td><td></td><td>0.725</td><td></td><td></td></tr><tr><td>39 Exercise or physical activity</td><td></td><td></td><td></td><td></td><td>0.691</td><td></td><td></td></tr><tr><td>40 Getting enough or better-quality sleep</td><td></td><td></td><td></td><td></td><td>0.667</td><td></td><td></td></tr><tr><td>41 Spiritual support or resources</td><td></td><td>0.461</td><td></td><td></td><td>0.496</td><td></td><td></td></tr><tr><td>42 Alternative therapies (herbal treatment, acupuncture, massage therapy, meditation, etc.)</td><td></td><td>0.519</td><td></td><td></td><td>0.403</td><td></td><td></td></tr><tr><td colspan="8">DAILY LIFE</td></tr><tr><td>43 I wanted more help with:</td><td>Being able to spend time with people my own age</td><td></td><td></td><td></td><td></td><td>0.631</td><td></td></tr><tr><td>44 Being able to talk to people my own age who have been through a similar cancer treatment experience</td><td></td><td></td><td></td><td></td><td></td><td>0.543</td><td></td></tr><tr><td>45 Paying my bills</td><td></td><td></td><td></td><td></td><td></td><td>0.536</td><td></td></tr><tr><td>46 Scholarship or loan repayment options</td><td></td><td></td><td></td><td></td><td></td><td>0.673</td><td></td></tr><tr><td>47 My health insurance (e.g., access/eligibility, coverage, cost)</td><td></td><td></td><td></td><td></td><td></td><td>0.426</td><td></td></tr><tr><td>48 Getting to and from my cancer care appointments</td><td></td><td></td><td></td><td>0.422</td><td></td><td></td><td>0.480</td></tr></tbody></table>

Bartlett's test of sphericity was significant (χ2 = 3541.57; p < 0.001) and the KMO test for sampling adequacy (KMO = 0.78) indicated a medium fit for factor analysis.

All 48 items except one (Q1-8) had loadings > 0.4. We decided, however, to retain Q1-8 even with a loading = 0.349 because for this item 54% of patients reported high or very high needs.

Ten items did not have unique factor loadings > 0.4. For all of these 10 items, we retained the item in the factor with the highest loading and the scale was rearranged according to the factor loadings. The factor loading for item 21 (Table 2) initially grouped in the subscale "Emotional health" was much higher for the subscale "Sexual and reproductive health". Similarly, item 42 (Table 2) was moved from the factor "Health and wellness" to the factor "Emotional health".
# Internal consistency

The Cronbach's alpha reliability coefficients ranged from 0.81 to 0.94, which indicates a very good internal consistency of each subscale (Table 3).

<table><caption>Table 3: Score, distribution and Cronbach's alpha of the QUEEC-AYAs scale</caption><caption>Table 3<br>Score, distribution, and cronbach's alpha of the QUEEC-AYAs scale</caption><thead><tr><th>Factor</th><th>No. of items</th><th>Range</th><th>Range observed</th><th>N</th><th>Median</th><th>Mean</th><th>SD</th><th>% score min</th><th>% score max</th><th>Alpha</th></tr></thead><tbody><tr><td>1</td><td>14</td><td>0-56</td><td>0-56</td><td>100</td><td>26</td><td>27.04</td><td>14.87</td><td>3</td><td>3</td><td>0.93</td></tr><tr><td>2</td><td>8</td><td>0-32</td><td>1-28</td><td>101</td><td>22</td><td>21.33</td><td>5.72</td><td>0.99</td><td>11.88</td><td>0.9</td></tr><tr><td>3</td><td>6</td><td>0-24</td><td>1-24</td><td>101</td><td>17</td><td>15.9</td><td>6.05</td><td>0.99</td><td>7.92</td><td>0.89</td></tr><tr><td>4</td><td>6</td><td>0-24</td><td>6-24</td><td>101</td><td>12</td><td>11.97</td><td>7.26</td><td>5.94</td><td>5.94</td><td>0.89</td></tr><tr><td>5</td><td>4</td><td>0-16</td><td>0-16</td><td>101</td><td>6</td><td>6.55</td><td>4.43</td><td>8.91</td><td>4.95</td><td>0.79</td></tr><tr><td>6</td><td>4</td><td>0-16</td><td>0-16</td><td>100</td><td>7</td><td>6.92</td><td>4.61</td><td>14</td><td>7</td><td>0.84</td></tr><tr><td>7</td><td>6</td><td>0-24</td><td>0-24</td><td>100</td><td>7</td><td>8.01</td><td>6.08</td><td>12</td><td>2</td><td>0.79</td></tr><tr><td>Total</td><td>48</td><td>0-192</td><td>2-188</td><td>96</td><td>98.5</td><td>96.45</td><td>36.29</td><td>1.04</td><td>2.08</td><td>0.95</td></tr></tbody><tfoot><tr><td colspan="11">KMO = 0.78 mean adjustment</td></tr></tfoot></table>

# Scoring of the scale, floor and ceiling effects

Descriptive statistics of the different subscale scores and also the global scale scores are presented in Table 3. Of the 103 participants completing the questionnaire, a total of 96 responded to all 48 items (no missing values). The average total score was 96.45 (SD = 36.29); it ranged from 2 to 188 (maximum possible score = 192). The proportions of participants who scored the minimum and maximum scores for each factor are also detailed in Table 3. No ceiling and floor effects were observed. The minimum score from each subscale ranged from 0.99-14% of patients, while the maximum score ranged from 2-11.88% of patients.

# Discussion

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 the 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].

## Conclusion

To conclude, the aim of the creation of this new needs-measuring tool was to combine the psychometric strengths and the quality of the measurement scale of the CNQ-YP with the ease of use and links with the care departments of the NA-SB. This project also makes it possible to offer a tool validated in French, that is usable both by researchers and by care teams and whose psychometric properties allow reliable measurement of unmet needs during and after cancer treatment.

## Declarations

### Ethics approval and consent to participate

This study was approved by the ethics committee of the Paoli-Calmettes Institute (IRB # IPC 2021-041, 2021 May 20th). Data collection took place in accordance with the (GDPR) General Data Protection Regulation. Returning the questionnaire was considered as providing written informed consent to participate.

### Consent for publication
**Availability of data and materials**

The data is available on request from the corresponding author: S. Justafré sebastien.justafre@univ-amu.fr

**Competing interests**

There are no competing interests.

**Funding**

This study is funded by Région Provence Alpes Côtes d'Azur, and Institut Paoli Calmettes

**Authors' contributions**

S. Justafré P. Marino and S. Calvin contributed to all stages of the research (construction of the protocol, analysis of the results, drafting of the manuscript). R. Touzani carried out the statistical analyses. F. Dupeyre-Alvarez sent out the questionnaires. P. Viens P. Dantin and N. Vey provided many comments to improve the manuscript. All authors reviewed the manuscript.

**Acknowledgements**

We thank health care workers who volunteered to participate in our research and the members involved in data collection.

**References**

1. Board I of M (US) and NRC (US) NCP, Hewitt M, Herdman R, Holland J. Introduction [Internet]. Meeting Psychosocial Needs of Women with Breast Cancer. National Academies Press (US); 2004 [cited 2022 Mar 28]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK215946/

2. Riba MB, Donovan KA, Andersen B, Braun Ii, Breitbart WS, Brewer BW, et al. Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology. J Natl Compr Canc Netw. 2019;17:1229-49.

3. Cochrane A, Woods S, Dunne S, Gallagher P. Unmet supportive care needs associated with quality of life for people with lung cancer: A systematic review of the evidence 2007-2020. Eur J Cancer Care (Engl). 2021;e13525.

4. Kirakosyan V, Ducousso-Lacaze A, Albarracin D. Les répercussions psychiques du cancer chez l'adolescent et le jeune adulte - AJA - et la famille : revue de la littérature narrative. Annales Médico-psychologiques, revue psychiatrique [Internet]. 2021 [cited 2022 Jul 7]; Available from: https://www.sciencedirect.com/science/article/pii/S0003448721001931

5. Mayer DK, Nasso SF, Earp JA. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. The Lancet Oncology. 2017;18:e11-8.

6. Raze T, Lacour B, Cowppli-Bony A, Delafosse P, Velten M, Trétarre B, et al. Cancer Among Adolescents and Young Adults Between 2000 and 2016 in France: Incidence and Improved Survival. Journal of Adolescent and Young Adult Oncology. Mary Ann Liebert, Inc., publishers; 2021;10:29-45.

7. Orbach D. La population d'adolescents et jeunes adultes atteints de cancer : des spécificités de mieux en mieux reconnues. Bulletin du Cancer. 2016;103:953-4.

8. Geiger AM, Castellino SM. Delineating the Age Ranges Used to Define Adolescents and Young Adults. JCO. Wolters Kluwer; 2011;29:e492-3.

9. Acquati C, Zebrack BJ, Faul AC, Embry L, Aguilar C, Block R, et al. Sexual functioning among young adult cancer patients: A 2-year longitudinal study. Cancer. 2018;124:398-405.

10. Siembida EJ, Loomans-Kropp HA, Tami-Maury I, Freyer DR, Sung L, Crosswell HE, et al. Barriers and Facilitators to Adolescent and Young Adult Cancer Trial Enrollment: NCORP Site Perspectives. JNCI Cancer Spectrum. 2021;5:pkab027.

11. Telles CM. A scoping review of literature: What has been studied about adolescents and young adults (AYAs) with cancer? Cancer Treatment and Research Communications. 2021;27:100316.
12. Wolfson JA, Bhatia S, Bhatia R, Smith MW, Dai C, Campbell SB, et al. Using Teamwork to Bridge the Adolescent and Young Adult Gap. JCO Oncology Practice. Wolters Kluwer; 2023;19:e150-60.

13. Anderson C, Nichols HB. Trends in Late Mortality Among Adolescent and Young Adult Cancer Survivors. JNCI: Journal of the National Cancer Institute. 2020;112:994-1002.

14. Warrington L, Absolom K, Velikova G. Integrated care pathways for cancer survivors - a role for patient-reported outcome measures and health informatics. Acta Oncol. 2015;54:600-8.

15. Afseth J, Neubeck L, Karatzias T, Grant R. Holistic needs assessment in brain cancer patients: A systematic review of available tools. European Journal of Cancer Care. 2019;28:e12931.

16. Clinton-McHarg T, Carey M, Sanson-Fisher R, D'Este C, Shakeshaft A. Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP). Health and Quality of Life Outcomes. 2012;10:13.

17. Howell D, Molloy S, Wilkinson K, Green E, Orchard K, Wang K, et al. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Annals of Oncology. 2015;26:1846-58.

18. Haines E, Lux L, Smitherman A, Kessler M, Schonberg J, Dopp A, et al. An actionable needs assessment for adolescents and young adults with cancer: the AYA Needs Assessment & Service Bridge (NA-SB). Supportive Care in Cancer. 2021;1-12.

19. Valizadeh L, Zamanzadeh V, Ghahramanian A, Musavi S, Akbarbegloo M, Chou F. Adolescent cancer survivors' experiences of supportive care needs: A qualitative content analysis. Nursing & Health Sciences. 2020;22:212-9.

20. Bibby H, White V, Thompson K, Anazodo A. What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review. Journal of Adolescent and Young Adult Oncology. 2016;6:6-30.

21. Stanton AM, Handy AB, Meston CM. Sexual function in adolescents and young adults diagnosed with cancer: A systematic review. J Cancer Surviv. 2018;12:47-63.

22. Vallerand RJ. Vers une méthodologie de validation trans-culturelle de questionnaires psychologiques: Implications pour la recherche en langue française. [Toward a methodology for the transcultural validation of psychological questionnaires: Implications for research in the French language.]. Canadian Psychology/Psychologie canadienne. Canada: Canadian Psychological Association; 1989;30:662-80.

23. Kuli D, Velikova G, Greimel E, Koller M. EORTC quality of life group translation procedure. EORTC Quality of Life Group. 2017;

24. O'Cathain A, Thomas KJ. "Any other comments?" Open questions on questionnaires – a bane or a bonus to research? BMC Medical Research Methodology. 2004;4:25.

25. Kaiser HF. A second generation little jiffy. Psychometrika. 1970;35:401-15.

26. Bland JM, Altman DG. Statistics notes: Cronbach's alpha. BMJ. British Medical Journal Publishing Group; 1997;314:572.

27. Vetsch J, Wakefield CE, McGill BC, Cohn RJ, Ellis SJ, Stefanic N, et al. Educational and vocational goal disruption in adolescent and young adult cancer survivors. Psycho-Oncology. 2018;27:532-8.

28. Guignard R, Beck F. Évolution du tabagisme chez les jeunes et politiques de lutte antitabac. Agora débats/jeunesses. Paris: Presses de Sciences Po; 2013;63:61-75.

29. Brown T, Platt S, Amos A. Equity impact of population-level interventions and policies to reduce smoking in adults: a systematic review. Drug Alcohol Depend. 2014;138:7-16.

30. Insee. Depuis 2000, la part des 18-29 ans habitant chez leurs parents augmente à nouveau - Insee Première - 1686 [Internet]. 2018 [cited 2023 Feb 14]. Available from: https://www.insee.fr/fr/statistiques/3315412

31. Insee. Âge moyen de la mère à l'accouchement | Insee [Internet]. 2023 [cited 2023 Feb 14]. Available from: https://www.insee.fr/fr/statistiques/2381390

32. Joël M, Rubio V. Pratiques non conventionnelles et articulation des soins en cancérologie. Le rôle actif des patients. Sciences sociales et santé. Montrouge: John Libbey Eurotext; 2015;33:73-97.

33. Abraham J. The pharmaceutical industry as a political player. The Lancet. 2002;360:1498-502.
34. Fern LA, Lewandowski JA, Coxon KM, Whelan J. Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. The Lancet Oncology. 2014;15:e341–50.

35. Siembida EJ, Loomans-Kropp HA, Trivedi N, O'Mara A, Sung L, Tami-Maury I, et al. Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention. Cancer. 2020;126:949–57.

36. Ewing JE, King MT, Smith NF. Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder. Qual Life Res. 2009;18:231–44.

37. Patterson P, McDonald FEJ, Allison KR, Bibby H, Osborn M, Matthews K, et al. The Clinical Utility of the Adolescent and Young Adult Psycho-Oncology Screening Tool (AYA-POST): Perspectives of AYA Cancer Patients and Healthcare Professionals. Frontiers Media; 2022 [cited 2023 Mar 15]; Available from: https://digital.library.adelaide.edu.au/dspace/handle/2440/135802

38. McCarthy MC, McNeil R, Drew S, Orme L, Sawyer SM. Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer. 2018;26:1655–64.

39. Johnson SB, Park HS, Gross CP, Yu JB. Complementary Medicine, Refusal of Conventional Cancer Therapy, and Survival Among Patients With Curable Cancers. JAMA Oncol. 2018;4:1375–81.

## Supplementary Files

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* tablesupplInitialfinalquestionnaireversion.xlsx