What are the factors associated with the quality of life for parents of children affected by neurodevelopmental disorders? Usage of the quality of life survey approved PAR-DD-QOL in general medicine

doi:10.21203/rs.3.rs-1501792/v1

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What are the factors associated with the quality of life for parents of children affected by neurodevelopmental disorders? Usage of the quality of life survey approved PAR-DD-QOL in general medicine

https://doi.org/10.21203/rs.3.rs-1501792/v1

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Aim: This project aims to evaluate the quality of life for parents of children affected by neurodevelopmental disorders using the survey approved by Par-DD-Qol.

Methods: It is a quantitative, descriptive, and analytical study directed at a population of 130 parents of children affected by neurodevelopmental disorders in the Ile-de-France region between January and May 2019.

Results: The main factors associated with better scores in quality of life are the support of the general practitioner as well as being in a relationship. The parents’ level of education, autism spectrum disorders, and delays in the diagnosis are associated with worst results when it comes to the quality of life.

Conclusion: Knowing the factors associated with the quality of life allows to target actions needed to support the parents as their well-being is crucial for better general care of the child.

Parental quality of life

neurodevelopmental disorders

Quantitative study

Neurodevelopment encompasses all mechanisms that will guide brain development and orchestrate brain functions (motor functions, language, cognitive, sensory integration, physical structure, behaviour, etc.). It is a dynamic process, influenced by genetics, biological, sociocultural, affective, and environmental factors.

The disruption of these brain developing processes results in a neurodevelopmental disorder (ND) corresponding with more or less important difficulties in one or many of these brain functions. It manifests itself more frequently in early childhood, before school age.

All of these disturbances with cognitive or affective development of a child will lead to a major impact on social, familial, and scholar functionings. (1)The most updated classifications to define neurodevelopmental disorders are the DSM-5 (2) and the CIM-11 that will become effective in 2022. (3)

They now gather all following pathologies: intellectual development disorders, communication disorders (language, speech and communication deficiencies), autism spectrum disorder, specific learning disorder (reading, writing and mathematical reasoning), motor disorders (coordination development disorder, stereotyped movements, and tics), attention-deficit/hyperactivity disorder, other specific neurodevelopmental disorders (fetal alcohol), non-specific or secondary.

Neurodevelopmental disorders are of key importance for public health. The 2018–2022 national strategy insists on the importance of finding answers as well as early and adapted tools for each disorder. (4)

Support for families is one of the main commitments of this strategy. Indeed, the parents living with a child suffering from one or many neurodevelopmental disorders prefaced with continual preoccupation throughout their child’s journey.

The parents constitute the cornerstone of their child’s care. This long, incessant and constant support has repercussions on their physical and psychosocial health as well as their conjugal, familial, and professional lives. It often leads to exhaustion that will then influence their role in the child’s development. (5)(6)(7)(8)

Supporting the parents then becomes crucial as numerous studies prove the correlation between familial well-being and the effectiveness of the child’s care. (9) (10) (21)

For a couple of years now, quantifying the quality of life is a core preoccupation to measure the parents’ health based on the WHO’s definition as ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity’. (11)

The quality of life is a complex concept with multiple determinants. Numerous scales are used: they can be specific a particular illness or generic and used on the general population. They can measure subjective elements or they can base themselves on objective determinants and health quantifiable. There exist scales of individual quality of life and familial ones.

Par-DD-Qol (Parental-Developmental Disorders-Quality of Life) is an approved self-evaluating survey of the parental quality of life —non-specific—but adapted to parents of children with developmental disorders. Numerous national studies have used this survey. (12) (13) (14) (15)

This project aims to evaluate the quality of life for parents of children affected by neurodevelopmental disorders using the survey approved by Par-DD-Qol as well as to identify emotional, adaptive, and general factors associated with the quality of life.

Participants and procedure

It is a quantitative, descriptive, and analytical study directed at a population of 130 parents of children affected by ND in the Ile-de-France region between January and May 2019.

Were included parents of children suffering from a neurodevelopmental disorder in the Ile-de-France region.

We tried to have a large and multi-centre enrolment in order to achieve a heterogeneous population. Moreover, we looked for structures offering different services between consultations for primal or specialised care, specific care for ND, day-time reception, and specialised facilities.

The test period is brief, about 5 minutes.

It is composed of 2 pages:

On the first page: collecting of anonymous general informations
On the second page: the PAR-DD-QOL approved scale for the quality of life

The parents then put the survey in the sealed envelope.

The investigator collects the sealed envelopes from a unique contact in each structures.

Necessary number of subjects

As it is not a comparative study between two variables or an average of two populations (as it is in case-control studies), the necessary number of subjects could not be precisely estimated through a statistical software.

Target of measure: quality of life

According to the WHO’s definition, the quality of life is ‘a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity’. (11)

The quality of life is a complex concept with multiple determinants.

Numerous scales are used: they can be specific to a particular illness or generic and used on the general population. They can measure subjective elements or they can base themselves on objective determinants and health quantifiables. There exist scales of individual quality of life and familial ones.

Could be cited ‘The Family Quality of Life Survey’ or the ‘Beach Center Family Quality of Life’ used in numerous countries to measure the quality of life of families with a child suffering from an intellectual handicap. (16)(17)

In France, a Ph.D. thesis on developmental psychology approved the Par-DD-Qol (Parental–Developmental Disorders–Quality of Life) survey in order to measure the impact of the child’s disorders on the familial quality of life as perceived by the parents. (12)

It is an adaptation of the PAR-ENT-Qol survey from the ‘Pierre Fabre’ laboratory measuring the impact of a young child’s ENT disorders on the parents’ quality of life. (19)

Par-DD-QoL

The PAR-DD-QOL approved scale of quality of life is composed of 17 items with responses graduated in 5 categories of severity according to the LIKERT scale.

Questions 1 to 15 are specific to evaluating the intensity of the difficulties, the answers vary from ‘not at all’ to ‘tremendously’.

Question 16 evaluates the frequency of sleep disorders from ‘never’ to ‘every time’.

Question 17 is relative to self-evaluation of the general quality of life ranging from ‘undisturbed’ to ‘tremendously deteriorated’.

This scale permits to obtain 3 scores being:

Emotional score : items [1 à 6] + 13 + 14 relative to stress, worry, impatience, feeling of irritation, loss of morale, sleep disorder, feeling of helplessness, health repercussions.
Adaptive score (disruption of daily life): items [7 à 11] + 15 + 16 evaluating the influence of the child’s disorders on time, relation with the family, social and professional relationships and sleep.
General score = sum of emotional and adaptive scores
Item 12 does not fit in the score calculation but it is part of the survey as it can orientate towards economical and financial evaluation.
Item 17 can be used on its own as a mean of self-evaluation for the general quality of life.

Preparation for the statistical study:

We have gathered the modes of some variables in order to achieve substantial numbers for each model.

In the case of multiple children suffering from ND within siblings, mixed variables were made to summarise the information on a siblings' level.

Self-evaluation of the quality of life with item 17 was split into two classes:

0: undisturbed + a bit degraded + mildly degraded
1: very degraded + tremendously degraded

The quality of life scores are transformed into standardised scores by dividing them by the total number of items composing them. Therefore, the standardised scored can vary from the value 1 (no impact at all) to value 5 (tremendous impact).

Within the collected answers, less than 1% of the data fall short to answer on a quality of life scale. We have then proceeded to replace those data by the average by item in order to not generated any bias in the statistical analysis.

Statistical analysis:

The computerised data entry was made under Excel.

The statistical analysis was made using the statistical software Sas 9.4.

With univariate analysis, we studied the effect of each variable on each score with:

A linear model for the emotional, adaptive and general scores (quantitative variables)
A logistical mode for item 17 which represents the self evaluation of the QOL (qualitative variable)

Chi-square tests were used to compare percentages. The average comparison tests were Fisher tests. The tests were deemed significant when the value of p was inferior to 0.05 and in tendency when p was inferior to 0.10.

The Odd-Ratio was used for the logistical mode. It is significant if superior to 1 with a confidence interval excluding 1.

When it comes to scores, a multivariate linear model then permitted to study the significant variables simultaneously with some adjusting between them. Moreover, a multivariate logistic model was used for item 17.

The choice of the adjustment variables to introduce in the multivariate models was made based on statistical criteria and the literature in the field.

We are presenting significant results with multivariate analysis.

Ethics approval and consent to participate

A declaration was made to the Commission Nationale de l'Informatique et des Libertés (CNIL) number 2211491v0 attesting that the data processing complies with the MR003 methodology of reference.

This research project relates to humane and social sciences experiments regarding healthcare.

It is out of the scope of law n° 2012-300 from March 5th, 2012 related to research involving a humane person — also known as the Jardé law — as it does not involve the humane person within the meaning of the law.

A notice was made to the Comité de Protection des Personnes (CPP) « Ile-de-France» in order to confirm it is a field inquiry that does not fall under the CPP jurisdictions.

Characteristics of the population of study: (Table 1)

130 parents were recruited between primal care consultations (22%), speech therapy or psychomotor care (15%), specialised medico-educational institutes (52%) and other specialised structures.

The majority of respondents were mothers (81%).

The parents’ quality of life:

The emotional score had an average of 2.96 with a standard deviation of 0,94.

The adaptive score had an average of 2,56 with a standard deviation of 0,88.

The general score had an average of de 2,88 with a standard deviation of 1,22.

When it comes to the general self-evaluation of the QOL, 67% of the parents said it was ‘unchanged, a little or mildly degraded’ and 33% of the parents found it was ‘very or tremendously degraded’.

Factors that influenced the emotional score: (Table 2)

Factors that influenced the emotional score were:

Being less than 50 years old (p=0.0274)
Being in a relationship (p=0,0245)
Being supported by the general practitioner (p=0,0150)
Having a child of scholar age send to school full-time and no child of scholar age send to school part-time or not at all (p=0,0303)

Factors associated with a bad emotional score were:

Having a higher level of education (p=0.0157)
Having a higher socio-professional category (p=0,0102)
Having a child suffering from autism spectrum disorders (p=0.0458)

Simultaneously taking into account those factors showed that alone, the general practitioner’s support and the level of education remained significant in a multivariate analysis (respectively p=0.0431 and p=0.002).

Factors influencing the adaptive score: (Table 3)

Factors associated with a better adaptive score were:

Being in a relationship (p=0,0254)
Having an only child (p=0,0284)
Being supported by the general practitioner (p=0,0091).
Having a child of scholar age send to school full-time and no child of scholar age send to school part-time or not at all (p=0,0143).

Factors associated with a bad adaptive score were:

Having a higher level of education (p=0.0121).
Having more than one child suffering from ND (p=0,0168)
Having a child suffering from autism spectrum disorders (p=0.0031) or an attention deficit hyperactivity disorder (p=0,0249).

In a multivariate analysis, the variables — marital status, level of education, autism spectrum disorders — remained significant (respectively p=0.0393, p=0.0241, p=0.0143).

Factors influencing the general score: (Table 4)

Factors improving the general score were:

Being less than 50 years old (p=0.009)
Being in a relationship (p=0,0143)
Having a child of scholar age send to school full-time and no child of scholar age send to school part-time or not at all (p=0,0015)

Factors associated with a bad general score were:

Having a higher level of education (p=0.0074)
Having a child suffering from autism spectrum disorders (p=0.0003)
Having a more than 10 years period of diagnosis (p=0.0008)

Simultaneously taking into account those factors in a multivariate analysis found a significant result with the marital status, the level of education, autism spectrum disorders, and a long period of diagnosis (respectively p=0.0353, p=0.0192, p=0.0043, p=0.0364).

Factors influencing the general self-evaluation of the QOL: (Table 5)

The following factors were associated with a better general self-evaluation of the quality of life:

Being less than 50 years old (p=0.0019)
Being in a relationship (p=0,0215)
Having a child of scholar age send to school full-time and no child of scholar age send to school part-time or not at all (p=0,0009)

Factors associated with a lower self-evaluation of the QOL were:

Having a more than 10 years period of diagnosis (p=0.0006)

The marital status and a long diagnosis period were always significant in a multivariate analysis (respectively p=0.0345 et p=0.0443).

Main results

With the multivariate analysis, the identified factors influencing the parents’ quality of life were: being in a relationship, the support of the general practitioner, the level of education, having a child suffering from autism spectrum disorders, and long delays in the diagnosis.

The study’s strengths and weaknesses

The main strength of our survey is that it studies the quality of life of parents with children suffering from neurodevelopmental disorders of all kinds according to the new classification of June 2018.

The parents’ multi-centre recruitment, in structures offering different kinds of care, permitted to have a heterogeneous sample of parents with diverse characteristics as well as a representation of all neurodevelopmental disorders.

On top of this, using the approved PAR-DD-QOL survey used in other studies makes a comparison with results from literature possible.

This study allowed us to highlight the factors foreshadowing the parents’ quality of life in order to offer adequate care.

We received positive feedback from the parents who were pleased by the interest given to their daily lives.

The professionals who participated in the study found that it was an excellent communication tool with the parents in order to tackle this subject and to offer specific interventions aiming to better their quality of life.

One of the study’s limits was that the majority of respondents were mothers (81%). Therefore, we did not objectify differences in the quality of life between mothers and fathers.

We are also aware that our sample of 130 parents of children with ND constitutes a rather small number linked with a recruiting made by a single person. Furthermore, we were not able to check other factors, only significant in univariate analysis, although they were confirmed by the literature.

Comparison with the litterature

Support from the general practitioner betters the emotional aspect of the parental quality of life: this result only confirms the general practitioner’s crucial role in neurodevelopment disorders’ care. They already have an important role in the diagnosis, follow-up, coordination, and first-aid care for children suffering from neurodevelopmental disorders (18)(19). But they are also the entire family’s physician and they are the first to spot difficulties for the carers in the family. Parents expect the general practitioner to listen, to pay attention to their daily life, and to offer solutions according to their needs. (26)(27)

Parents in a relationship had better adaptive and general scores and they had a better self-appreciation of the quality of life.

Numerous studies highlighted that the parents’ marital status influenced their quality of life. Raising alone a child suffering from neurodevelopmental disorders can be a tremendous burden. The Cappe and al (5) study found that in the case of ASD, single parents are less prepared than parents in a relationship. They often experience irrational feelings of guilt when it comes to the apparition of autistic symptoms. In addition to this, they are confronted with their child’s lack of affect and a lack of material and affective support a partner could offer.

The health professionals’ role seems crucial to help parents in a relationship to not neglect their personal life and only focus on the child’s need by offering solutions to rest. When it comes to single parents they need help to develop a social network, for example by encouraging them to participate in discussion groups or parents’ associations.

Our study also permitted to highlight a more important impact autistic spectrum disorders have on the adaptive and general quality of life compared with other neurodevelopmental disorders.

Many studies were found in the literature which notes a lower level of quality of life for parents of children suffering from ASD compared with other disorders or with typical children. (12)(5)(20)

The literature journal The quality of life of parents of children with autism spectrum disorder by Vasilopoulou E. and Nisbert J revealed that parents of children with ASD had a lower quality of life compared with parents of children with normal neurodevelopment. It also highlighted variables associated with this inferior quality of life such as the children’s behavioural difficulties, being unemployed, being a single mother, or also a lack of social support. (23)

A Saudi study carried out to 306 families with handicapped children (mentally retarded, learning disorders, physical handicaps, autism) has shown that autism affects the parents’ quality of life the most. (24)

Indeed, the characteristics of autism spectrum disorders, the latency in the diagnosis, the associated sleep and behaviour disorders, and the chronic dependence of the children could explain this assessment.

Another hypothesis is that other neurodevelopmental disorders such as intellectual deficiency, motor, or sensory handicaps usually benefit from specialised care in specialised facilities from the beginning and the children are less in contact with the parents compared with ASD. This would probably explain why they affect the parents’ quality of life less.

The parents of children suffering from ASD need the most support possible.

In the journal from the literature Martin and al of 2019, 11 studies were analysed (4 for children with ADHD and 7 for children with ASD): out of 6 studies examining parental stress, 5 permitted to highlight a link with their child’s sleep disorders. (25) We then understand that the parents’ quality of life affects greatly the evolution of their child’s disorders and then, by extension, their care.

Our study showed that having a higher level of education is associated with a lower quality of life in its emotional, adaptive, and general dimensions.

These unexpected results are not aligned with many studies suggesting that parents with a good level of education seek to understand the disorders of their children and develop better strategies of resilience. (28)(20)(29)(30) A Taiwanese study found no link between the level of education and the parents’ quality of life. (31)

Furthermore, many sociology works pursue the hypothesis that parents with a high level of education have higher scholar aspirations for their children (32) and that the children’s level of social skills influences the familial quality of life (33) which could partly explain this result.

We also found that a long delay in the diagnosis influenced the general score and the general self-evaluation of the quality of life. This result was also found in an Iranian study that uncovered a link between this delay and maternal depression. (6)

When it comes to the difference in the participation to scientific studies between father and mother, many studies found that mothers accompany their children more than fathers in care facilities and answer more significantly to this type of survey. (21) It is found in the literature that neurodevelopmental disorders have a greater impact on mothers (22)(12).

To conclude, some factors had an impact on the parents’ quality of life only in univariate analysis, but we have found similar results in the literature.

Being less than 50 had an impact on the emotional and general dimensions and the general self-appreciation of the quality of life.

Studies found that ageing parents are worried about their children’s future as adults. They wonder where their child will live and who will take care of them if they are to die before them. (12)(13)(20)

A full-time education of the children helped the adaptive and general scores and the self-evaluation of the QOL.

This assessment was made by other studies which showed that difficulties to access to a permanent education impacted on the parents’ quality of life as they had to seek professional arrangements to take care of their children the remaining time. (34)(28)(35)

The number of dependant children suffering from ND influenced the adaptive dimension of the quality of life in our study. We have found a similar result for the fathers’ QOL in another study. (20)

This work studied in an undifferentiated manner the impact of all neurodevelopmental disorders of children on the parents’ quality of life.

The difficulties lived by the parents are not the subject of enough studies. Whatever the child’s disorder may be, the parents are emotionally affected and have to put up strategies of personal, familial, professional, and social adaptations.

Knowing the factors associated with the quality of life allows to target actions needed to support the parents as their well-being is crucial for better general care of the child.

In our study, the main factors associated with better scores in quality of life are the support of the general practitioner as well as being in a relationship. The parents’ level of education, autism spectrum disorders, and delays in the diagnosis are associated with worst results when it comes to the quality of life.

The studies are clear when it comes to the fact that the general practitioner holds a crucial role in detecting, diagnosing, and following up children suffering from ND. Our study underlined on top of this the interest of parental support to better their quality of life.

The results are non-exhaustive due to the scale of the survey; new research with a greater population of study could supplement them.

QOL: quality of life

Par-DD-QoL: Parental - developmental disorders - quality of life

ND: neurodevelopmental disorders

ASD: autism spectrum disorders

ADHD: attention deficit hyperactivity disorder

Ethics approval and consent to participate

A declaration was made to the Commission Nationale de l'Informatique et des Libertés (CNIL) number 2211491v0 attesting that the data processing complies with the MR003 methodology of reference.

This research project relates to humane and social sciences experiments regarding healthcare.

A notice was made to the Comité de Protection des Personnes (CPP) « Ile-de-France» in order to confirm it is a field inquiry that does not fall under the CPP jurisdictions.

Consent for publication

Not applicable.

Availability of data and materials

It is possible to share research data publicy.

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Competing interests

The authors declare that they have no competing interests.

Funding

Not applicable. No funding has been requested

Authors' contributions

JC writed this work. She participated to conception and design, she criticized and evaluated the work at every step.

EB participated to conception and design, she collected the data and approved the final version of the manuscript.

BC participated to conception and design, she helped interpret the data and approved the final version of the manuscript.

SM participated to conception and design, she revised the article and approved the final version of the manuscript.

MS participated to conception and helped for design. She revised the data and helped interpret them. She approved the final version of the manuscript.

CG helped draft the study protocol. She corrected the early versions of the drafting of the results and their interpretation. She approved the final version of the manuscript.

JSC corrected the first versions of the manuscript and approved its final version.

KB helped with the research work to design the study. She helped us collect the data and interpret it. She approved the final version of the manuscript.

GI evaluated the work at every step and approved the final version.

Acknowledgements

Not applicable.

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Table 1 : Caracteristics of the population

Table 2 : Emotional score

	N	Emotional score	Standard Deviation	p*	p**
Age :				0,0274	0.6611
< 50	98	2.84	0.89
≥ 50	32	3.26	1.07
Marital status:				0.0245	0.05
Couple	90	2.82	0.88
Single/Separated/Widow(er)	40	3.22	1.02
Level of education:				0.0157	0.002
Higher level of education	79	3.10	0.91
High school/Junior school/Primary school	51	2.69	0.96
Socio professional category:				0,0102	Not studied
†*Higher*: liberal profession, professor, scientific profession, corporate official or other higher intellectual professions/Craftsman, Retailer, CEO Employer/Intermediate profession	56	3.14	0.93
Lower: Employee/Worker/Unemployed	60	2.67	0.89
Other	14	3.28	0.99
Support by attending physician				0.0150	0.0431
†Yes	80	2.79	0.95
No	46	3.21	0.92
No answer	4
Child’s disorder:				0.0458	0.1783
Autism spectrum disorder	78	3.08	1.02
Other disorders	52	2.74	0.80
Children’s schooling				0.0303	0.2189
No child of school age: all ≤ 3 years old or ≥ 16 years old	41	3.24	1.05
†At least one full time* child of school age (4 to 15 yo), and no part-time children of school age or out of school children*	56	2.74	0.83
At least one part-time child of school age, and no out of school children	17	3.14	0.75
At least on child of school age out of school	16	2.65	1.06

*: probability according to a univaried analysis ; **: probability according to a multivaried analysis ; †: variable of reference in case of multiple modalities. Score ranging from 1 (no impact at all) to 5 (tremendous impact)

Table 3 : Adaptative score

	n	Adaptative score	Standard deviation	p*	P**
Martital status:				0.0254	0.0393
Couple	90	2.39	0.77
Single/Separated/Widow(er)	40	2.76	1.04
Level of education :				0.0121	0.0241
Higher level of education	79	2.66	0.81
High school/Junior school/Primary school	51	2.26	0.92
Socio professional category:				0.0663	Not included
†*Higher*: liberal profession, professor, scientific profession, corporate official or other higher intellectual professions/Craftsman, Retailer, CEO Employer/Intermediate profession	56	2.69	0.75
Lower: Employee/Worker/Unemployed	60	2.31	0.94
Other	14	2.56	0.93
Siblings				0.0284	Not included
†No siblings	27	2.27	0.93
No siblings suffering from ND	90	2.49	0.83
Siblings with at least one child suffering from ND	13	3.05	0.83
Support by attending physician				0.0091	0.0757
Yes	80	2.36	0.79
No	46	2.78	0.97
No answers	4
Number of children suffering from Neurodevelopmental Disorders (ND)				0.0168	Not included
1	117	2.44	0.86
≥ 2	13	3.05	0.83
Child’s disorders:
Autism spectrum disorder	78	2.69	0.84	0.0031	0.013
Other disorders	52	2.23	0.85
Attention deficit hyperactivity disorder	33	2.80	0.89	0.0249	Not included
Other disorders	97	2.40	0.85
Children’s schooling				0.0143	0.0809
No child of school age: all ≤ 3 years old or ≥ 16 years old	41	2.61	0.88
†At least one full time* child of school age (4 to 15 yo), and no part-time children of school age or out of school children*	56	2.26	0.74
At least one part-time child of school age, and no out of school children	17	3.00	0.98
At least on child of school age out of school	16	2.53	0.98

Table 4 : General score

	n	General score	Standard deviation	p*	p**
Age :				0.009	0.9315
< 50	98	2.70	1.14
≥ 50	32	3.43	1.31
Marital status:				0.0143	0.0353
Couple	90	2.69	1.13
Single/Separated/Widow(er)	40	3.25	1.31
Level of education:				0.0074	0.0192
Higher level of education	79	3.09	1.14
High school/Junior school/Primary school	51	2.51	1.24
Socio professional category:				0.0517	Not included
†*Higher*: liberal profession, professor, scientific profession, corporate official or other higher intellectual professions/Craftsman, Retailer, CEO Employer/Intermediate profession	56	3.11	1.23
Lower: Employee/Worker/Unemployed	60	2.58	1.17
Other	14	3.07	1.14
Support by attending physician				0.0629	0.1596
†Yes	80	2.71	1.22
No	46	3.13	1.16
No answers	4
Child’s disorders:				0.0003	0.0043
Autism spectrum disorder	78	3.17	1.14
Other disorders	52	2.40	1.17
Children’s schooling				0.0015	0.2151
No child of school age: all ≤ 3 years old or ≥ 16 years old	41	3.34	1.30
†At least one full time* child of school age (4 to 15 yo), and no part-time children of school age or out of school children*	56	2.43	1.06
At least one part-time child of school age, and no out of school children	17	3.18	1.07
At least on child of school age out of school	16	2.81	1.17
Child’s disorders period of diagnosis				0.0008	0.0364
≤ 4 years	52	2.63	1.17
> 4 years and ≤ 10 years	38	2.55	1.03
†> 10 years	40	3.45	1.23

Table 5 : Self evaluation of the QOL :

	n	Odds ratio	Intervalle de confiance	p*	p**
Age :				0.0019	0.5044
< 50 years old	98	1
≥ 50 years olds	32	3.74	1.63 - 8.64
Marital Status :				0.0215	0.0345
Couple	90	1
Single/Separated/Widow(er)	40	2.49	1.14 - 5.41
Child’s disorders:				0.0502	0.0801
Autism spectrum disorder	78	2.20	0.999 - 4.837
Other disorders	52	1
Children’s schooling				0.0009	0.4923
No child of school age: all ≤ 3 years old or ≥ 16 years old	41	6.673	2.599 - 17.131
†At least one full time* child of school age (4 to 15 yo), and no part-time children of school age or out of school children*	56	1
At least one part-time child of school age, and no out of school children	17	3.655	1.100 - 12.144
At least on child of school age out of school	16	1.741	0.457 - 6.631
Délai de diagnostic des troubles de l'enfant				0.0006	0.0443
≤ 4 years old	52	0.246	0.101 - 0.598
> 4 years old et ≤ 10 years old	38	0.167	0.059 - 0.469
> 10 years old	40

*: probability according to a univaried analysis ; **: probability according to a multivaried analysis

No competing interests reported.

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What are the factors associated with the quality of life for parents of children affected by neurodevelopmental disorders? Usage of the quality of life survey approved PAR-DD-QOL in general medicine

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Abstract

Background

Material And Methods

Participants and procedure

Necessary number of subjects

Target of measure: quality of life

Par-DD-QoL

Preparation for the statistical study:

Statistical analysis:

Ethics approval and consent to participate

Results

Discussion

Conclusion

Abbreviations

Declarations

References

Tables

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