Quality of Life: Changes in Self Perception in People with DS who Participate in Laliga Genuine Santander. Self Reports and External Reports

The hypothesis posed was whether participation in LaLiga Genuine Santander (competitive football) influenced the quality of life (QL) of the people who participated in it, since their perception of themselves is enhanced by all the aformentioned factors (selfdetermination, social inclusion, emotional well-being, physical well-being, material wellbeing, rights, personal development, interpersonal relationships). The objective was to evaluate the QL of people with Down's Syndrome (DS) using their self-perception (n=39) and the perception of the informants (family members, teachers) (n=39). The KidsLifeDown Scale, with a few modifications was used. In general, differences of opinion between the subgroups of participants with DS and informants showed that results were higher in terms of perception for participants in the DS subgroup. Scores for all variables were higher for those participants with DS who said they did engage in practicing competitive football. Despite the perception of informants provides a great deal of information regarding the QL of participants with DS, the latter should be involved in the evaluation process and their self perceptions taken into account. Our research shows that participation in the league modifies the perceptions of the participants with Down's Syndrome regarding their quality of life. However, these perceptions are not shared by the informants. Preprints (www.preprints.org) | NOT PEER-REVIEWED | Posted: 18 December 2020 doi:10.20944/preprints202012.0478.v1 © 2020 by the author(s). Distributed under a Creative Commons CC BY license.

DS, the latter should be involved in the evaluation process and their self perceptions taken into account.

Participants
A total of 78 people participated in the study, 39 with DS who were users of CDC, with a mean age of 29 years (men n=24; women =15; athletes = 9, non athletes = 30) and 39 informants. Here, "athletes" refers to the federated footballers belonging to the Cordoba Football Club of LaLiga Genuine, Spain; "non athletes" were non federated and did not participate in the League. The informants (family members, teachers, coordinators) needed to know the participant well for at least six months and have the opportunity to observe them in different environments for prolonged periods.
Participants with DS presented a predominant moderately high level of intellectual disability (according to adaptive behaviour) of 50%; in detail, 56% in conceptual skills, 51.3% in social skills and 54% in practical skills. Other conditions evaluated showed that 25.5% had physical disabilities, 44% obesity, 18.3% sensorial disability, 6.3% had serious health problems and 4.9% had sleep disorders.
Both athletes and non-athletes with DS participated in two regular sessions of Physical Education at CDC, in which basic movement patterns were practiced to resolve motor difficulties in daily life using various circuits and posts (jumping, throwing, coordination and balance) as well as improving basic physical qualities: strength, speed, stamina and range of movement. Finally, various sports were practiced (basketball, football etc) which included the use of balls in games modified and adapted to the participants' different levels of ability.
Outside CDC, participants also took part in three 90 minute training sessions a week under the supervision of a coach. Each session consisted of a warm-up period, the main session and cool-down period: a) Warm-ups were divided into general warm-ups, in which the participants activated the neuromuscular system with group games, followed by specific warm-ups for which the goal keepers were separated from the field players and specific motor activities were practiced. b) During the main session, balls were used and the specific technical and tactical moves of football were practiced (control, passing, shooting, etc.) Strategic roles were distributed for each side (offense player with ball, offense player without ball, defense player, goalkeeper). Later, real play situations were practiced in short games, changing the rules to meet the objective established for each session. c) During cool-down, the participants did stretches. This type of training is more demanding of motor skills than the routine sessions at CDC.
All participants with DS lived with their families.

Method and ethical approval
Previous to the study, the objective was presented to the directors of CDC to obtain their ethical approval and the consent of those involved or their family members. The authors of this study declare that, based on the Helsinki Declaration, they have taken into account the basic principle of respect for the individual, his/her right to self determination and to make decisions once clearly informed of the pros and cons, risks and benefits of participating in this research study [9]. The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Institutional Review Board of DOWN CÓRDOBA, Asociación Síndrome de Down (number 127; 03/09/2020). Once written consent was obtained, a meeting was held with the participants with DS and informants to discuss rules of application and proper use, as well as to warn informants not to influence the responses of participants with DS, though they could clarify points as needed. Participants with DS were told they could request clarification of anything they did not understand.

Institutional Review Board Statement:
The study was.
The first author of this study then sent the QL scale to CDC, who distributed it to parents, teachers and coordinators (a printed version and via email). The scales were gathered by a CDC liaison. Once filled out, the researchers compiled the answers in a database and carried out the pertinent statistical analyses. During the process of administering the scale, no personal data was compiled that might identify the person under evaluation. Instead, identification codes were used (such as pseudonyms) that were unknown to the researchers to protect confidentiality, in accordance with Spain's Organic Law 3/2018 on protection of personal data and guarantee of digital rights. These identification codes allowed the results of the evaluations to be returned to CDC to be used in later interventions with the participants [10].

Instrument
The KidsLife-Down Scale [8] was used to evaluate personal QL results in children and young adults with DS between the ages of 4 and 21, based on a range of 15 to 21 years, with a few modifications consistent with the way the question was presented; participants with DS responded with one of two options, and informants with a Likert scale. All 78 participants (DS and informants) answered the scale.
The scale consisted of 96 items divided into eight aspects of QL (self determination, rights, emotional wellbeing, material wellbeing, physical wellbeing, social inclusion, interpersonal relationships and personal development) [11]. This scale provides standardised scores and percentiles for the eight aspects as well as a QL profile report.
Each aspect was composed of 12 items. There were two versions of the scale used: (a) a self report filled out by participants with DS, with two options (yes/no) and (b) an external report filled out by informants using a Likert scale with four frequency options (never, sometimes, often, always) [12]. The questions asked of informants were the same as those answered by participants with DS, but in the third person.
Direct scores for each aspect of QL are the sum of the scores for the items in each section. The direct scores are then converted to standard scores (M=10; DT=3) following the 15 to 21 year age range provided by the scale. The total standard score is obtained by adding up the standard scores for the eight aspects, which is then converted to the standard composite score or Quality of Life Index (QLI) (M=100; DT= 15) [8], taking into account the aforementioned range.
High scores for the various aspects of QL and QLI indicate a high level of functioning for the person in a given area, greater QL and personal wellbeing. All scores can be shown in a graph of the QL profile [5].
At the time of writing the survey questions, we attempted to avoid any cognitive bias in the two groups of respondents so as to obtain honest information. Also, the sample bias has been taken into account in order to ultimately obtain reliable information of good quality.
A numerical code was assigned to each question, as well as to each answer category. Coding facilitated the subsequent entering of the data into the computer, while preventing errors in this process. An additional advantage was that it allowed the coding done for each response category to be recorded in the response protocol, which is important if the data is reused at a later time. Of course, given that there were two different responses (dichotomy and Likert scale), these were scored so as to obtain (M=10) for all of them.

Method of Scale Validation
The scale used was validated by Gómez et al. [8]. In order to validate the modifications introduced, the validation process was carried out by a team of professional experts belonging to CDC's board of directors. This committee did not participate as informants. The earliest version of the questionnaire was sent to CDC, who reviewed the possible errors in formulating the questions. They provided feedback that served to reformulate the questions in an appropriate way to avoid confusion among the people surveyed.
Feedback focused mainly on the following issues: wording of questions, vocabulary related to the context of CDC, elimination of ambiguous questions in favour of more specific ones, removal of terminology that could be interpreted as being patronising or offensive, and benefits of some questions regarding the logic of the questionnaire.
The revision of the questionnaire was carried out with in-depth analysis of all contributions, so that it included those that could be considered adequate to allow for the drafting of a definitive model. The improved version was again forwarded to CDC. The questionnaire was considered non-offensive, comprehensible, and suitable for participants.
To validate the reliability of the questionnaire, verify and confirm the matter under investigation, Cronbach's alpha consistency coefficient was used [14;15;16].

Statistical Analysis
Normality compliance was tested for each group using the variables of gender, age and sport via the Kolmogorov-Smirnov test. The aforesaid hypothesis was not met for all variables studied (p < .001 in all cases); therefore, non-parametric or free distribution tests were applied, specifically Spearman's Rho (rank-order correlations) and Mann-Whitney's U-tests. The SPSS programme (v. 25; IBM) was used for all statistical analyses of data.

Results
The psychometric properties of the scale were satisfactory. The questionnaire answered by participants with DS obtained a Chronbach alpha coefficient of 0.6 and that answered by the informants obtained a coefficient of 0.87.

Age
In the analysis of age correlation for both participants with DS and informants with respect to quality of life, the Kolmogorov-Smirnov test showed that normality compliance was not achieved. Therefore, Spearman's Rho (rank-order correlations) was used for the subsample of participants with DS (n = 39) as well as the subsample of informants (n = 39), using the age scale and all aspects of QL implied in the study (see Table 1).

Differneces in terms of gender
In the analysis of differences in terms of gender, with respect to the aspects studied and QLI of participants with DS and informants, the Kolmogorov-Smirnov test showed that normality compliance was not achieved. Therefore, to contrast the differences between both groups (participants with DS and informants), non-parametric testing was applied, equivalent to Student t for independent groups, Mann-Whitney U-tests (see Table 2).
Preprints (www.preprints.org) | NOT PEER-REVIEWED | Posted: 18 December 2020 doi:10.20944/preprints202012.0478.v1 1 Results for self perception of participants with DS indicated significant differences 2 for the emotional wellbeing variables (Z = -2.29; p = .022), material wellbeing (Z = -2.29; p 3 = .022), and personal development (Z = -2.20; p = .028). For these three variables, results 4 were higher for men. No statistically significant difference was detected for the remaining 5 variables, nor for QLI ( see Table 2). 6 In the second place, with regard to informants, statistically significant differences 7 were detected between genders for participants with DS for the variables social inclusion 8 (Z = -2.49; p = .013), emotional wellbeing (Z = -2.29; p = .022), physical wellbeing (Z = -2.45; 9 p = .014), Material Wellbeing (Z = -3.88; p = <.001) and QLI (Z = -2.84; p = .004). For all five 10 variables, results were higher for men. No statistically significant difference was detected 11 for the remaining variables (see Table 2). 12 Therefore, the opinions of participants with DS and informants coincided with 13 respect to emotional wellbeing and material wellbeing. 14 15 3.3 Differences between variables in the study and QLI between athletes and those who did not 16 practice competitive sports 17 18 To verify if there were differences between variables in the study and QLI between 19 athletes and those who did not practice competitive sports, according to the self 20 perceptions of participants with DS and in the opinion of informants, the non-parametric 21 Mann-Whitney U-test was again applied. Results are shown in Table 3. 22 23 24 The opinion of participants with DS showed statistically significant differences 27 between the group with DS that practiced competitive sports and those that did not. These 28 results for all variables, including QLI, were higher for those participants who said they 29 practiced competitive sports (in all cases, p = < .001; Table 3). 30 31 In the second place, with reference to informant opinion, no statistically significant 32 difference was detected for any of the variables as regards the practice or not of 33 competitive sports on the part of participants with DS. 34 35

Differences of opinion between particpnats with DS and informants 36 37
Differences of opinion were also evaluated concerning the variables studied and QLI 38 between participants with DS and informants. A new series of Mann-Whitney U-tests was 39 applied to contrast differences between both groups of participants, those with DS and 40 informants. Results are shown in Table 4. 41 42 better skills and habits that make them more competent [11]. 117 Informants showed significant gender-related differences in social inclusion, 118 emotional wellbeing, physical wellbeing, material wellbeing and QLI, with men being 119 favoured; this coincides with participants with DS with respect to emotional and material 120 wellbeing. The differences and biological peculiarities of men and women are taken into 121 account, as well as their interaction with gender-related social factors such as identity, 122