Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

Abstract

Context/Objective

No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain.

Design

A cross-sectional survey.

Setting

Two SCI rehabilitation centers.

Participants

Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34).

Interventions

Not applicable.

Outcome Measures

Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale.

Results

A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were “parenthood expectations” (84%), “leg/foot movement” (83%), and “bladder” function (83%), compared to “dressing/undressing” (78%), “walking/ability to move” (77%) and “bladder” function (77%) rated for 13-25-year-olds. “Sit-to-stand” (79%), “leg/foot movement” (78%) and “arm/hand movement” (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted “sit-to-stand” (100%), “eating/drinking” (54%), and “physical function” (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in “mobility in the community” (unhappiness item) for 13-25-years-old.

Conclusion

Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.

Introduction

Pediatric-onset spinal cord injury (SCI) is accompanied by life-long problems associated with health and psychosocial issues that lead to poor quality of life.¹ In Europe, the incidence rate of pediatric SCI ranges from 3.3–6.2 cases per million population per year for traumatic and atraumatic SCI.² A similar incidence rate has been reported in Spain, with most cases occurring between 15 and 17 years, predominantly associated with road transport and sports events^3–5 Compared with adult-onset SCI, pediatric injury is associated with more severe functional deficits because of the higher proportion of complete injuries in children.^6–8 Furthermore, complications associated with normal growth, such as hypercalcemia, scoliosis, and hip dysplasia also compound the problems of pediatric-onset SCI that affect functional disability and rehabilitation.^8–10 Psychosocial issues, such as anxiety and depression, poor social participation, difficulties in school education, and social integration with peers also contribute to reduced quality of life in children with SCI.^1,8 Both health and life domain issues affect the independence of children and adults with pediatric-onset SCI.^11,12 Thus, the prioritization of these issues would help develop a comprehensive rehabilitation program that addresses important and wide-ranging problems reported by the pediatric-onset SCI population.

Increasingly, the needs of people with SCI and caregivers are considered to optimize their rehabilitation and to provide long-term improvements in both health and wellbeing.¹³ Patient and public involvement has positively impacted the development of clinical care and research programs.¹⁴ In the pediatric SCI population, care is family-centered, reflecting the central role of parents and family in the care of the child´s or adolescent´s life.⁸ Thus, caregivers and parents must also be involved with setting rehabilitation and research priorities for the pediatric SCI population. Rehabilitation and research priorities should also be aligned to ensure the translation of new findings to improve rehabilitation outcomes for individuals with SCI.^15,16 This goal inspired a group of European rehabilitation specialists in pediatric SCI to form the Pan-European Pediatric Spinal Cord Injury (PEPSCI) Collaboration and to collect data on the health, social and emotional status of children and young adults with SCI.¹⁷ In this study, we present the health and life priorities of children, adolescents, and young adults with SCI, in addition to their parents and caregivers, living in Spain.

Materials and methods

A cross-sectional survey was conducted on individuals with SCI who lived in the Spanish community. The Toledo Hospital Complex Clinical Ethics Committee approved the study (#4907042017). All participants signed an informed consent or assent form before inclusion in the study.

Individuals with SCI were screened from hospital databases in Toledo and Baracaldo. The lead clinicians at the hospitals screened individuals with SCI and their parents/caregivers to evaluate whether they met the inclusion criteria. The respective research teams recruited subjects from March 2017 to February 2018. At the hospital, lead clinicians personally interviewed both participants with SCI and their parents/caregivers. For participants with SCI up to the age of 17 years, youth and their parents/caregivers were invited to participate in the study. Parents and caregivers of youth aged 18 years or older only participated if their child/ward permitted them to take part.

The inclusion and exclusion criteria for participation in the study were the following: 1) age between 2 and 25 years with pediatric-onset spinal cord injury; 2) diagnosis of SCI due to congenital (e.g. tethered cord syndrome, Arnold-Chiari malformation, skeletal malformations) or acquired causes; 3) outpatients or inpatients discharged from the acute treatment phase of SCI for at least 6 months. Patients and parents/caregivers were excluded if they were diagnosed with severe neurological conditions that affected their cognitive abilities (e.g. secondary to encephalocele or acquired brain injury).

Survey

The survey included three parts: the Basic Information Form (Part I), the Health and Life Domain Questionnaire (H&LDQ) (Part II, designed as a survey), and the Neurological Form (Part III). Part I and Part II were administered and completed by all participants at the hospitals, under the supervision of the lead clinician or research team member to ensure a high response rate and number of completed questions. Health care professionals completed Part III (Neurology Form). Written instructions were included for the person completing the surveys (Parts I, II, and III) and were standardized across all age groups (i.e. 8-12-year-olds, 13-25-year-olds, and parents/caregivers of 2-25-year-olds). Data from 18-25-year-olds with pediatric-onset SCI were analyzed to investigate priorities for adolescents who transitioned into young adulthood.

Part I

The Basic Information Form (see Appendix A) included 12 items related to demographic and clinical characteristics of participants with SCI (i.e. age, sex, ethnic origin, date of onset, neurological characteristics of the SCI, and educational level of participant with SCI and parent/caregiver). Part I included a self-report questionnaire for 18-25-year-olds with pediatric-onset SCI and a version for parents/caregivers of 2-17-year-olds with SCI.

Part II

The PEPSCI Collaboration developed the H&LDQ (see Appendices A and B) on the basis of the findings presented in a systematic review¹⁵ that described general health and life (H&L) priorities of adults with SCI.

The H&LDQ measured H&L domains rated on the basis of importance (how important each item is in the daily life of the child), happiness (how happy or unhappy the child was with this part of his/her life), and research priorities (how important or unimportant the SCI problem is for the participant´s doctor to study). Importance, happiness, and research priority data were quantified. Each item was scored on a 5-point Likert scale, ranging from 1 (“very unimportant”/“very unhappy”) to 5 (“very important”/“very happy”). To facilitate analysis, the happiness score was inverted so that 1 represented “very happy” and 5 “very unhappy.” A free text option for unaddressed research priorities related to SCI was available for all participants to complete.

The H&LDQ was translated into the Spanish language following current recommendations^18,19 and a two-step cross-cultural process.^18,19 In the first step, two bilingual translators (native Spanish-speakers), who were experts in SCI rehabilitation and familiarized with the colloquial language adapted to the pediatric population, translated the questionnaire from English into Spanish. In the second step, an expert committee of four translators, which included two researchers, reviewed two independent translations of the questionnaires. Semantic and conceptual criterion and content equivalences were also assessed.

The H&LDQ for 8-12-year-olds with SCI included 36 items for unhappiness priorities (22 life domains and 14 health domains) and 7 items (life domains) for research priorities. The 8-12-year-olds completed the 8-12-Year H&LDQ and were assisted by their parents/caregivers to clarify questions if required.

The H&LDQ for 13-25-year-olds with SCI included 45 items (28 life domains and 17 health domains) for importance, unhappiness, and research priorities. The leading clinician provided assistance and clarification if needed.

The H&LDQ for parents and caregivers was used to record importance, unhappiness, and research priorities for 2-25-year-olds with SCI. This survey included 44 items (27 life domains and 17 health domains) that measured importance, unhappiness, and research priorities. The structure and format of questions were identical to those for 13-25-year-olds. The life domain item “How you look” (L5) was not asked of parents/caregivers of 2-25-year-olds and was deleted.

Part III

The Neurology Form (see Appendix A) was developed to collect basic information related to the clinical characteristics of SCI of the participants (date of onset, etiology, neurological level and severity of injury, and functional grade of injury). The health care professional completed this questionnaire.

Data analysis

Each part of the survey was reviewed for missing or ambiguous responses. Data were analyzed for individuals with SCI, irrespective of whether completed surveys were paired with their parents/caregivers. Data analysis was conducted using Sigma Plot version 12.0 (Systat Software, Inc, USA) and SPSS version 22.0 (IBM Corp., Armonk, New York, USA). Descriptive analysis was performed using Microsoft Excel 2016 software package (Microsoft, Redmond, WA). Means and SD, medians with 25th and 75th percentiles, frequencies, and percentages were calculated to describe respondents’ characteristics and questionnaire responses. Frequency and percentage data were calculated to describe the sociodemographic and neurological SCI characteristics. For the H&LDQ, medians with 25th and 75th percentiles and percentages were calculated for each item. The highest importance, unhappiness, and research priorities scores were quantified using the Likert scale (values of “4” and “5” scores, or values of “5” score) and expressed as percentages and/or medians with interquartile range (25th and 75th percentiles). An overall percentage score for each H&L domain item was calculated on the basis of the individual importance, unhappiness, and research priority scores for each H&L domain item. H&L domain items were ranked according to the highest percentage overall value. Data obtained from the H&LDQ were calculated without interpolation of missing data (missing data are highlighted in Table 1). Additionally, a stratified analysis was performed according to the level of injury/disability (paraplegia/tetraplegia). Differences in H&LDQ items reported between youth with paraplegia and those with tetraplegia aged between 8–12 years (unhappiness items) and 13–25 years (unhappiness and overall items) were analyzed using the Fisheŕs exact test. Stratification analyses of H&LDQ items scores according to the level of injury/disability (paraplegia/tetraplegia) were categorized into two groups: important item (values of “4” and “5” scores) and nonimportant item (values of “3” or lower scores). The statistical analysis was conducted at a 95% confidence level. P value <0.05 was considered statistically significant.

Table 1.

Demographic and spinal cord injury characteristics of 35 individuals with pediatric-onset SCI.

Variables	Number (%)
Age group (years)
2–25	35 (100)
2–12	17 (48.6)
0–5	3 (8.6)
2–7	9 (25.7) *
6–12	14 (40) *
8–12	8 (22.9)
13–25	18 (51.4)
13–17	11 (31.4) **
13–14	3 (8.6)
15–17	8 (22.9) **
18–25	7 (20)
18–21	5 (14.3)
Gender of Child/Adolescent or Young Adulta
Female	12 (34.3)
Male	22 (62.9)
Raceb
White (British, Irish, mixed, other)	25 (71.4)
Asian or Black (British, other)	3 (8.6)
SCI neurological levelc, severityd and functional gradee
C1-4 ASIA Impairment scale (AIS) A-B or C-D	2 (5.7) / 8 (22.9)
C5-8 ASIA Impairment Scale grade (AIS) A-B or C-D	3 (8.6) / 4 (11.4)
T1-S5 Impairment Scale grade (AIS) A-B or C-D	2 (5.7) / 14 (40)
Tetraplegia/Paraplegia/Cauda equina	16 (45.7) / 14 (40) / 3 (8.6) ¥
Motor Incomplete/Complete	26 (74.3) / 7 (20) ¥
Time since injury (years)f
0–5	20 (55.6)
≥5	14 (38.9)
Etiologyg
Traumatic/Atraumatic	15 (42.8) / 13 (37.1)
Congenitalh/Other-Not specified	5 (14.3) / 1 (2.9)

Age-groups are included as recommended by the International Spinal Cord Injury Core Data Set (Version 2.0, non-indented data) and as originally defined in Part I and Part II surveys (indented underlined data, see Appendix B). ASIA: American Spinal Injury Association. AIS: American Spinal Injury Association Impairment Scale. *n = 2 missing data **n = 1 missing parent/caregiver data. ^¥n = 2 missing data. ^an=1 missing data. ^bn = 7 missing data. ^cn = 2 missing data. ^dn = 2 missing data. ^en = 2 missing data. ^fn = 1 missing data. ^gn = 1 missing data. ^hCongenital pathologies described as “tethered spinal cord” (n = 3), “other congenital skeletal malformations” (n = 1), or with no description (n = 1). The etiology of traumatic SCI includes “motor vehicle/pedestrian accident” (n = 4), “surgical complication” (n = 4), “birth trauma/injury” (n = 1), “other accident” (n = 3), “sports” (n = 2), “fall” (n = 1). The etiology of atraumatic SCI includes “inflammation/infection” (n = 3), “transverse myelitis” (n = 6), “tumor” (n = 4).

Results

A total of 60 individuals completed the surveys (26 completed by participants with pediatric-onset SCI [response rate 97%] and 34 completed by parents/caregivers [response rate 94%, 26 dyads]), providing information on 35 individuals with SCI (Table 1: 62.9% male, age 12.4 ± 5.7). Standardized data reporting, as recommended in the International Spinal Cord Injury Core Data Set (Version 2.0),²⁰ are included in Table 1 alongside the age group originally defined by the PEPSCI Collaboration for Part I and Part II surveys.

Most children, adolescents, and young adults with SCI were diagnosed as motor incomplete SCI (74.3%), with a neurological injury level between T1-S5 (45.7%), 5 years after injury (5.3 ± 4.2), and traumatic etiology (42.8%) (Table 1). Road transport events and surgical complications were the most common traumatic causes of SCI (53.3%). The educational level of children, adolescents and young adults, and their parents/caregivers ranged from nursery school to postgraduate education, reflecting the range of educational organizations and opportunities available in Spain (Figure 1).

Figure 1.

Educational background of participants with SCI and their parents/caregivers.

Participants aged 2–12 years

The top 10 overall priorities for H&L domains of 2-12-year-olds with SCI, reported by their parents/caregivers, are shown in Table 2. “Leg/foot movement,” “bladder” and “arm/hand movement” were the top three overall health priorities. “Parenthood expectations,” “personal needs” and “home support services” composed the top three overall life priorities.

Table 2.

Ranked Top 10 overall, importance, unhappiness, and research priorities for life and health domains reported by parents and caregivers of participants with SCI aged 2–12 years (n = 17), on the basis of the percentage of important (4) and very important (5) scores.

PARENTS AND CAREGIVERS OF PARTICIPANTS WITH SCI AGED 2–12 YEARS
	Overall*	Importance	Unhappiness	Research
LIFE DOMAINS
Parenthood expectations (L26)	84	94	58	93
Personal needs (L17)	80	100	42	93
Home Support Services (L18)	77	100	39	87
General health/feel (L1)	76§	100	35	94
Physical Function (L2)	75	93	40	93
Adulthood expectations (L27)	75	100	36	87
General mood (L3)	70	100	7	100
Fitness/exercise (L4)	70	100	13	93
Employment (L23)	68	100	46	53
Dating expectations (L24)	68	100	46	53
HEALTH DOMAINS
Leg/foot movement (H7)	83	93	54	100
Bladder (H11)	83	100	46	100
Arm/hand movement (H4)	81	92	46	100
Bowel (H12)	81	100	38	100
Transfer movements (H10)	79	100	30	100
Dressing/undressing (H6)	77	92	60	77
Pressure injuries (H17)	77	92	22	100
Eating/drinking (H5)	76	100	27	92
Spasms (H16)	75	90	29	91
Menstrual period management (H13)	75¥	80	33	88

*Priorities are ranked by overall percentage value of important and very important scores. ^§Response rate 100%.^¥Response rate lower than 80% that reflects the lower number of responses by parents/caregivers of girls (response rate 100% in parents/caregivers of girls with SCI aged 2–12 years ([n = 7; 41.2%]).

Overall priorities for 2-7-year-olds and 8-12-year-olds, as rated by parents/caregivers, were also analyzed. For 2-7-year-olds, “parenthood expectations” (“4&5” scores: 92%), “bladder” (89%), and “leg/foot movement” (86%) were the top three overall H&L priorities. For 8-12-year-olds, “arm/hand movement” (89%), “general health” (83%) and “leg/foot movement” (80%) represented the top three overall H&L priorities.

Research and unhappiness priorities for 2-7-year-olds and 8-12-year-olds, as reported by parents/caregivers, are summarized in Supplementary Tables C.1 and C.2 (see Appendix C). The top H&L domain research priority for 2-7-year-olds and 8-12-year-olds was “physical function” and “pressure injuries,” respectively (Supplementary Table C.1). “Parenthood expectations” and “dressing/undressing” were the top H&L domain unhappiness priorities for 2-7-year-olds and 8-12-year-olds (Supplementary Table C.2), respectively.

Although the structure of the H&LDQ for 8—12-year-olds was not identical to 13—25-year-olds, their top three H&L domain unhappiness priorities included “pressure injuries,” “sit-to-stand” and “bowel” function (Supplementary Table C.3, see Appendix C), while “experience at school,” “physical function” and “general mood” composed the top three research priorities (Supplementary Table C.3).

Participants aged 13–25 years

The top 10 overall priorities for H&L domains of adolescents and young adults (13-25 years), reported by participants with SCI and their parents/caregivers, are shown in Table 3. For 13-25-year-olds, “sit-to-stand,” “leg/foot movement” and “arm/hand movement” were the top three overall health priorities, while “personal needs,” “mobility in the community” and “physical function” were the top three overall life priorities. For parents and caregivers of 13-25-year-olds, “dressing/undressing,” “walking/ability to move” and “bladder” function were the top three overall health priorities, while “fitness/exercise,” “physical function” and “general health” were the top three overall life priorities (Table 3). The top 10 importance, unhappiness, and research priorities for H&L domains of this age range are summarized in Supplementary Tables C.4, C.5 and C.6 (see Appendix C). Overall priority scores for all H&L domain questions reported by 13-25-year-olds are presented in Figure 2.

Table 3.

Ranked Top 10 overall, importance, unhappiness, and research priorities for life and health domains reported by participants with SCI aged 13–25 years (n = 18) and their parents and caregivers (n = 17), on the basis of the percentage of important (4) and very important (5) scores.

PARTICIPANTS WITH SCI AGED 13–25 YEARS					PARENTS AND CAREGIVERS OF PARTICIPANTS WITH SCI AGED 13–25 YEARS
	Overall*	Importance	Unhappiness	Research		Overall*	Importance	Unhappiness	Research
LIFE DOMAINS
Personal needs (L18)	75	100	50	77	Fitness/exercise (L4)	76§	100	35	94
Mobility in the community (L15)	71	100	38	77	Physical function (L2)	75§	94	29	100
Physical function (L2)	70§	94	22	94	General health/feel (L1)	71§	94	18	100
Health care access (L16)	65§	93	19	83	Leisure/recreation (L5)	71§	94	29	88
Home Support Services (L19)	65	92	15	87	Home Support Services (L18)	71	100	22	80
Mobility at home (L14)	65	100	19	77	Personal needs (L17)	70	100	31	79
Fitness/exercise (L4)	63§	78	33	78	Community accessibility (L14)	68	100	23	79
Assistive technologies (L20)	63	100	15	73	General mood (L3)	67§	94	6	100
Ease of arrival to destination (L17)	63	100	25	65	Health care access (L15)	65	100	7	88
Mobility at place of education (L22)	61	93	21	69	Home accessibility (L13)	65	92	15	86
HEALTH DOMAINS
Sit-to-stand (H8)	79	100	54	81	Dressing/undressing (H6)	78	100	39	93
Leg/foot movement (H7)	78§	100	44	89	Walking/ability to move (H9)	77	100	36	94
Arm/hand movement (H4)	77§	100	43	83	Bladder (H11)	77	92	33	100
Eating/drinking (H5)	75§	100	40	83	Leg/foot movement (H7)	77	100	36	93
Dressing/undressing (H6)	72	100	40	75	Arm/hand movement (H4)	76	100	33	93
Menstrual period management (H13)	71¥	100	43	75	Eating/drinking (H5)	76	100	33	93
Transfer movements (H10)	70	93	40	77	Transfer movements (H10)	76	100	30	92
Pressure injuries (H17)	68	91	36	75	Spasms (H16)	76	100	25	100
Spasms (H16)	68	86	29	88	Menstrual period management (H13)	75¥	86	33	100
Pain (H15)	67	86	33	82	Sit-to-stand (H8)	74	100	30	86

SCI: Spinal cord injury. *Priorities are ranked by overall percentage value of important and very important scores. ^§Response rate 100%. ^¥ Response rate lower than 80% which corresponds to the lower number of girls’ responses (response rate 100% in girls with SCI aged 13–25 years ([n = 5; 27.8%]) and their parents/caregiverś responses (response rate 100% in parents/caregivers of girls with SCI aged 13–25 years ([n = 5; 29.4%]), respectively.

Figure 2.

Overall percentage of importance, unhappiness, and research for life and health domain items reported by participants with SCI aged 13–25 years.

The overall priorities for 13-17-year-olds and 18-25-year-olds, as rated by participants with SCI and their parents/caregivers, were also analyzed. The top three overall H&L priorities reported by 13-17-year-olds were “arm/hand movement” (78%), “eating/drinking” (78%), and “leg/foot movement” (76%), while their parents/caregivers rated “dressing/undressing” (84%), “walking/ability to move” (83%) and “bladder” function (81%) as the top three overall H&L priorities. The 18-25-year-olds reported “bladder” function (85%), “pressure injuries” (85%) and “sit-to-stand” (83%) as their top three overall H&L priorities, while parents/caregivers rated “fitness/exercise” (81%), “sit-to-stand” (77%) and “leg/foot movement” (76%) as their top three overall H&L priorities.

Comparisons of overall priorities across age ranges and groups

A comparison of the top overall priorities, in addition to importance, unhappiness, and research items for different age ranges and groups, are shown in Figures 3 and 4. The top overall priorities for H&L domains of children (2-12 years) and adolescents/young adults (13-25 years) with SCI, as reported by parents/caregivers, were similar (Table 2 and 3). In addition, parents/caregivers of 2-12-year-olds (Table 2) and 13-25-year-olds (Table 3) reported identical priority scores for the following top overall priorities: “physical function” (75% vs 75%), “eating/drinking” (76% vs 76%), and “menstrual period management” (75% vs 75%). For adolescents and young adults, the top 10 overall priorities reported by parents/caregivers and those rated by 13-25-year-olds themselves also showed similarities with almost identical scores for “leg/foot movement” (77% vs 78%), “arm/hand movement” (76% vs 75%) and “eating/drinking” (76% vs 75%) (Table 3).

Figure 3.

Schematic of the top H&L domain importance, unhappiness, and research priority for different youth age ranges and participant groups. Common priorities for individuals with SCI and their parents/caregivers are marked with an asterisk.

Figure 4.

Summary of the top three overall health and life priorities reported by participants with SCI and their parents/caregivers. The top overall H&L priority for 2-12-year-olds and 13-25-year-olds reported by their parents/caregivers, and the top overall H&L priority as reported by 13-25-year-olds themselves are marked with an asterisk. The top 10 H&L pediatric-onset SCI priorities unaddressed by Simpson et al. (2012) are marked in upper case.

Unique overall priorities were also reported when general comparisons were made across groups and youth with different age ranges. Adolescents and young adults reported “pain” and “assistive technologies” as priorities, which were not reported by their parents/caregivers (Table 3). Parents and caregivers of 13-25-year-olds reported “leisure/recreation” and “walking/ability to move” as top overall priorities, which were not highlighted neither by 13-25-year-olds (Table 3) nor parents/caregivers of 2-12-year-olds (Table 2). Parents and caregivers of 2-12-year-olds reported “bowel” function and “parenthood expectations” as priorities (Table 2), which were not rated within the top 10 overall priorities by 13-25-year-olds (Table 3).

Differences in H&LDQ items according to the level of injury/disability

Adolescents and young adults (13-25 years) with tetraplegia reported significantly greater unhappiness related to the “mobility in the community” item (P = 0.04) compared to youth with paraplegia. No statistically significant differences were identified between participants with tetraplegia and those with paraplegia for the other unhappiness items in 13-25-year-olds and unhappiness items in 8-12-year-olds (P > 0.05).

No significant differences were reported for overall priority items between participants with tetraplegia and those with paraplegia for 13-25-year-olds P > 0.05).

Discussion

This study reveals for the first time the H&L priorities reported by children, adolescents and young adults with SCI, and their parents/caregivers in Spain. Parents and caregivers of 2-12-year-olds and those of 13-25-year-olds rated “parenthood expectations” and “dressing/undressing” as their top overall priorities, respectively. For 13-25-year-olds, “sit-to-stand” was the top overall priority, with “sit-to-stand,” “eating/drinking” and “physical function” emphasized as their top unhappiness, importance, and research priority, respectively. Individuals with adult-onset SCI have reported several H&L priorities similar to those reported in this study.^{15,16,21–35}

Differences in H&L priorities among children, adolescents, young adults, and parents/caregivers may reflect changes in their needs during their transition from childhood to adolescence or from adolescence to young adulthood. Several reported priorities are similar to the developmental goals described in the young population,³⁶ such as the importance of mobility or factors related to general health and access to health care. Additionally, the H&L priorities reported in this study are similar to priority areas highlighted in children with neurodevelopmental disorders such as spina bifida (e.g. activities associated with daily care, daily living, and mobility).³⁶

Specific age-related needs of youth may explain the differences in H&L priorities reported by their parents/caregivers. The limited comprehension and communication abilities of younger participants with SCI could also explain the differences in reported H&L priorities, such as pain, between children and their parents/caregivers. Adolescents and young adults identified pain as a priority, which has also been reported by adults with SCI.^{24,25,31–34} However, pain was not considered a priority by their parents/caregivers. Differences in reporting pain as a priority between youth and their parents/caregivers could reflect difficulties in its assessment in younger participants.³⁷

Life domain priorities

The top overall life priorities rated by parents/caregivers of 2-25-year-olds and directly by 13-25-year-olds were similar to those reported by adults with SCI in previous studies.^{15,25,26,33,34} Physical function, activities of daily living/personal care, fitness/exercise, access to services, and home support were considered the most important top overall priorities for life domains, similar to those previously reported by adults with SCI.^15,25,26,33 However, this study identified areas such as home and community accessibility, or adulthood and parenthood expectations (Figure 4), which were not ranked in the top 25% priorities by Simpson et al.¹⁵ The reported accessibility and mobility needs could be related to the lack of accessibility to buildings and public spaces or unavailability of appropriate means for mobility, which are considered the major environmental barriers for people with SCI.³⁸ Nevertheless, life priorities reported such as parenthood or dating expectations could be associated with poor social and emotional functioning in children with SCI related to having fewer opportunities to interact with peers.^39–41

Additionally, “mobility in the community,” ranked as the top seven overall H&L priority for 13-25-year-olds, was the only item that showed significant differences between paraplegia and tetraplegia. Adolescents and young adults with tetraplegia reported significantly higher unhappiness scores than those obtained in 13-25-year-olds with paraplegia. These findings suggest that accessibility and transport problems, especially for participants with tetraplegia, may have a negative impact on psychosocial functioning. Tetraplegia has previously been identified as the strongest factor associated with activity limitations and participation restrictions in people with SCI.^42–45 Furthermore, adults with tetraplegia reported lower life satisfaction than those with paraplegia.^45,46 The greater physical challenges faced by people with tetraplegia compared to paraplegia could explain these findings.

Thus, these results emphasize the importance of life domains and the need for developing new measurement tools designed to detect unaddressed priorities, such as the Child Needs Assessment Checklist.⁴⁷ The development of similar needs assessment tools^48–50 will help improve the psychosocial rehabilitation process for this population.

Health domain priorities

The top overall health priorities rated by parents/caregivers of 2-25-year-olds and by 13-25-year-olds themselves were similar to those reported by adults with SCI.^{15,21,22,24,27–32} Arm/hand and lower extremity functions, transfer movements, eating, dressing and spasms were considered the most important and common overall priorities for reported health domains in this study. Moreover, parents/caregivers of 2-25-year-olds have reported bladder function as the most common top overall H&L priority, which is also similar to adults with SCI.^{15,21,22,24,27−31}

Many of the heath priorities have already been highlighted as rehabilitation goals for adults with SCI, such as bladder function, walking, arm/hand function, transfer movements, and chronic pain.^13,25,51,52 Importantly, the rehabilitation of arm/hand function is essential so that youth can perform several activities of daily living and self-care,⁵³ including bladder management via intermittent urinary self-catheterization.^54,55 In fact, teaching self-catheterization to children older than 5 years of age or prevention and care of pressure injuries have been suggested as recommendations in the pediatric SCI population.^54–56 Thus, these results reflect the importance of managing these priorities in pediatric SCI, an approach suggested in previous studies.^54,55 Additionally, this study also highlighted areas such as sit-to-stand (Figure 4), which were not ranked in the top 25% priorities by Simpson et al.¹⁵ The recovery of sit-to-stand function is considered crucial for the rehabilitation of functional gait. Therefore, the use of activity-based therapies (locomotor training)⁵⁷ focused on these priorities could improve the management of pediatric SCI.

The importance and implications of this study are based on providing a potential guide for the effective management of reported H&L priorities for different age groups of youth with SCI. Although a comprehensive pediatric SCI care program already exists in Spain, the current findings highlight the benefit of a multidisciplinary program that focuses on individual health and psychosocial issues for both children with SCI and their parents/caregivers. A better understanding of these areas could tailor rehabilitation programs to meet their individual priority needs⁴⁷ and the development of preventive health and psychological interventions (e.g. active coping strategies).⁵⁸ Additionally, approaches such as social advocacy as part of rehabilitation programs could improve the participation of people with SCI.⁵⁹

Limitations

Some limitations of the current study should be considered. Firstly, although developmental factors may contribute to differences in the reported H&L priorities for each age range, these priorities could also depend on the acceptance by the child of their circumstances, which may also influence their perception of quality of life,¹ participation, and life satisfaction.⁴¹ This could therefore account for differences in reported H&L priorities between individuals with pediatric-onset SCI and their parents/caregivers. Secondly, only broad H&L areas were defined in this study. Future studies should characterize in more detail the impact of each high priority area and investigate the effectiveness of therapeutic approaches focused on each aspect. Furthermore, this study also highlights that further research should focus on a biopsychosocial framework with a multidisciplinary management approach to pediatric SCI. Additionally, the development of national guidelines for systematic follow-up of health and psychosocial status⁶⁰ with the application of potential adjunct tools, such as telerehabilitation, should also be considered.⁶¹ Finally, the relatively small sample size and inclusion of nondyad data precluded a broader stratified analysis of priorities based on participant demographics. Thus, further international research with a larger sample size is now needed.

Conclusions

Although health domains were considered as the top overall H&L priorities by adolescents and young adults and their parents/caregivers, life domains such as adulthood and parenthood expectations, which were not originally addressed,¹⁵ were highlighted by parents/caregivers of 2-12-year-olds. Mobility in the community (life domain) was the only priority item that showed significant differences between participants with tetraplegia and those with paraplegia, when it was reported as an unhappiness score by 13-25-year-olds. Thus, these findings encourage rehabilitation professionals in Spain to work together with youth with SCI and their parents/caregivers to address those life priorities that have largely been ignored in priority studies of adult-onset SCI, and to effectively address age-specific needs with a comprehensive and multidisciplinary care plan.

Funding Statement

This work was supported by the Alicia Koplowitz Foundation (2019).

Conflicts of interest No potential conflict of interest was reported by the author(s).

Funding This work was supported by the Alicia Koplowitz Foundation (2019).