Pain and health-related quality of life for children with lower limb absence: An exploratory study

Abstract

Objective

To investigate health-related quality of life, pain, socket comfort and residual limb conditions in children with lower limb absence.

Design

This is a cross-sectional study with patient-reported outcomes measures collected from children with congenital and acquired lower limb absence. Outcomes included health-related quality of life, body pain mapping, socket comfort score and clinical evaluation of the residual limb. Effects of age, prosthetic technology, school attendance and pain on health-related quality of life and socket comfort were investigated.

Setting

Data from 31 children were collected in prosthetic centres in the UK (N = 15) and Cambodia (N = 16).

Results

This cohort had a clinically important reduction in health-related quality of life compared to normative data (Δ = 13.21). Psychosocial health declined with age (ρ = −0.394, p = 0.014). Low intensity pain in the residual limb, back and intact joints was frequent and negatively correlated with health-related quality of life (ρ = −0.327, p = 0.036). Socket comfort was positively correlated with physical well-being (ρ = 0.398, p = 0.013). Unplanned emergency amputations resulted in worse residual limb outcomes than planned surgeries (p = 0.02).

Conclusion

This cohort experience significant, under-addressed challenges in physical and mental well-being. Declining mental well-being underscores the urgent need for age-appropriate psychological support that addresses the evolving social and emotional demands of growing up with a disability. The prevalence of widespread pain highlights the need for targeted gait training and improved prosthetic fit and design. Poorer residual limb health outcomes following emergency amputations reinforce the importance of paediatric-specific surgical and post-operative protocols. Holistic, child-centred care integrating physical, psychological and social support is essential.

Keywords

Paediatric amputation children health-related quality of life pain residual limb conditions

Introduction

Predicted natural disasters, conflicts and infectious disease forecasts a doubling in amputation and limb absence by 2050,¹ with children bearing a significant percentage of this disability burden. However, most research in this area focuses on adults.² For children, growing with lower limb absence presents significant physical and psychological challenges.² Anatomical structures that did not evolve to bear load must now transfer it, and the remaining anatomy has to compensate.³ As prostheses do not fully replicate the complex function of the musculoskeletal system, this challenges growth, as musculoskeletal structures and motor strategies are still developing.⁴ Moreover, as children develop mentally, they must begin to process the implications of their disability. The impact of growing up as a prosthesis user is likely profound, yet little data exists to fully quantify its effects on physical and mental well-being.

Understanding this impact requires a comprehensive approach. Paediatric health-related quality of life (HRQoL) encompasses the domains of physical, emotional, social and school functioning.⁵ Due to the physical disability, HRQoL can be expected to differ from typically developing children, which may identify a need for targeted psychological support and enhanced social integration strategies.^6,7 Additionally, HRQoL may decline with age, as in typically developing children, due to developmental and social challenges during adolescence (e.g. academic pressure and identity-related concerns).⁸ Research in other paediatric cohorts has highlighted the crucial role of school attendance for mental well-being,⁹ making it important to assess how school-related factors impact HRQoL. Sex, level and cause of limb absence can also influence HRQoL due to increased social pressure and puberty, reduced mobility or trauma of the limb loss.^8,10,11 Finally, in adults with limb loss, more advanced and comfortable prostheses improve HRQoL.¹²

Among the many determinants of HRQoL, pain plays a critical role. Pain can present in many ways for children with limb absence varying in duration and impact.¹³ Pain is likely correlated with HRQoL.^14,15 However, little is known about the prevalence, type and cause of pain in this cohort.^16–18 It is hypothesised that children experience residual limb pain and pain in secondary locations due to prosthetic use, as adults do.^3,14,19,20 Residual limb pain can be caused by socket fit issues, exacerbated by growth²¹, and residual limb conditions. Yet, no study has mapped the specific locations of pain within the residual limb or explored how prosthetic fit influences pain. Conditions such as bone overgrowth – common among young children with transtibial amputations²² – are known to influence prosthetic comfort and usability.²³ It is important to identify whether other conditions affect this cohort and their prosthetic usage. Socket interface materials can also play a critical role in comfort and residual limb health,^24,25 however, perceived socket comfort is often undocumented in paediatrics. It is key to identify appropriate socket materials that accommodate children's high activity levels and pain tolerance, while preserving residual limb health.

Pain is not limited to the residual limb. Prosthesis users often compensate to cope with limb absence and poor prosthetic fit. Such compensations can lead to secondary pain locations, as has been documented in adults³ and, although no clear evidence exists, a similar pattern is expected for children.²⁶ Biomechanical analyses in adults show differences in compensation movements for differing amputation levels.²⁷ Identifying specific locations of secondary pain by amputation level is crucial for developing tailored rehabilitation interventions. The surgical context – whether planned or emergency – may also influence residual limb health and pain. Traumatic or infection-related amputations involve extensive tissue damage, preventing optimal surgical techniques and leading to delayed wound healing, increased infection rates and revision surgeries.^28,29 All these factors likely increase the risk of poor residual limb outcomes and chronic pain.²⁹

Data on HRQoL, socket comfort, pain and residual limb conditions have been collected from children in the United Kingdom and Cambodia following the protocol laid out by Edgar et al.² This study aims to explore the relationships among HRQoL, age, prosthetic technology, pain, prosthesis comfort, residual limb conditions and school attendance in children with lower limb absence.

Methods

Children, their families and clinicians were included in the study design and data collection protocol described by Edgar et al.² This study was approved by the National Ethics Committee for Health Research of Cambodia (NECHR_24), Wales Research Ethics Committee (21/WA/0027) and the local institutional ethics committee in the UK (ICREC_6609720). Individual participant assent and written legal guardian consent were collected.

The study was conducted in the UK in an NHS prosthetic centre (Royal National Orthopaedic Hospital, Stanmore) and in Cambodia in three prosthetic centres supported by Exceed Worldwide and the Department of Prosthetics and Orthotics (Phnom Penh, Kampong Chhnang and Kampong Som).

Children aged 6–18 years who had at least one major lower limb absence and were current prosthesis users were recruited as part of the study. The lower limb absence levels included ranged from ankle-disarticulation to transfemoral limb absence level. Due to the complexity of congenital limb absence, the level of prosthetic components supplied was used as a proxy for limb absence level to account for children who may not have had elective amputations.

The inclusion of ankle-disarticulation represents a deviation from the protocol outlined by Edgar et al.² However, this was necessary due to the high prevalence of children presenting with ankle-disarticulation at the UK prosthetic centre; excluding this group would have significantly limited participant recruitment there. Importantly, all included cases were congenital and exhibited reduced bone growth, resulting in residual limb lengths comparable to transtibial cases and subsequent usage of transtibial prosthetic componentry (inclusion of pylon for shank).

Cohort grouping

Data are extracted from two locations: Cambodia and the UK. As such, all results are presented for individual locations and as a composite full cohort either in the main manuscript or in Supplemental Material. Inferential statistics are additionally applied to the composite cohort for specific analyses which are deemed to be unaffected by location. These include variables dependent primarily on physiology (bone overgrowth) and aetiology (unplanned vs. planned surgery).

Ankle-disarticulation and transtibial cases were grouped in the below-knee group. Knee-disarticulation and transfemoral cases were grouped in the above-knee group.

Health-related quality of life

The PedsQL 4.0 Generic Core Scale is a modular instrument designed to measure HRQoL in children aged 5–18 years.⁵ The questionnaire provides three scores: Psychosocial Health, Physical Health and Total Score. Descriptive statistics were applied.

Additionally, the minimal clinically important difference of the PedsQL are used: Total Score (4.36), Physical Health Score (6.66), and Psychosocial Health Score (5.30).³⁰ Following a PedsQL meta-analysis,³¹ differences between variables were assessed by any magnitude of effect that is above the minimal clinically important difference defined by Varni et al.,³⁰ and a confidence interval that excludes a null or trivial effect.³¹ These criteria were used to assess differences across sub-groups based on disability, prosthetic component access and school attendance. Scores for typically developing children³¹ provided normative comparative values.

Correlations between HRQoL, pain and socket comfort were investigated. Depending on normality, the Pearson or the Spearman correlation coefficient (ρ) and p-value with significance set at 0.05 were calculated for each comparison (one-sided). Thresholds for strong (ρ ≥ 0.50), medium (0.3 ≤ ρ < 0.5) and small (0.1 ≤ ρ < 0.3) correlation were defined.

Pain

PedsQL 4.0 – Paediatric Pain Questionnaire is a tool to assess pain for children aged 5–18 years.³² The participants rated their level of pain on a child-friendly visual scale with pain faces that represented maximum pain (10) and no pain (0). Ratings were provided for pain experienced at time of assessment (Q1) and for the greatest pain experienced in the current week (Q2). The relationship between pain levels and limb absence levels was investigated using the independent-samples t-test or the Mann–Whitney U Test based on distribution normality.

Additionally, children were asked to explain where they felt pain in the body by colouring the affected areas, which is an effective method for helping them express their pain.³³ The body sketches used in the questionnaire were modified to make them representative of these cohorts (any level of lower limb absence).² For those who reported at least one body pain location (meaning they coloured where they had pain in the body), a heat map of cohort pain intensity was calculated. The number of children who reported pain in each body location was calculated and pain intensity was calculated for above-knee and below-knee groups separately (equation (1)).

Cohort pain intensit y_{location x} = \frac{number of children who reported pain in location x}{maximum number of children who reported pain in any location}

(1)

A MATLAB (R2022a, MathWorks) code was written to assign the pain intensity to each body location and create a visual representation of the pain intensity throughout the body. Finally, one question of the PedsQL quality of life questionnaire pertains to frequency of pain episodes and was separately analysed to calculate percentage of children who report pain frequently.

Residual limb conditions and socket comfort

The Socket Comfort Score was used to assess prosthesis comfort.³⁴ Differences in Socket Comfort Score based on socket and liner material were assessed using descriptive and inferential statistics. The independent-samples t-test or Mann–Whitney U Test was used to assess differences in Socket Comfort Score based on socket material. The one-way between-groups ANOVA or Kruskal–Wallis test was used to assess differences in Socket Comfort Score based on socket and liner material. Significance was set at 0.05.

Children's treating prosthetists completed a clinical evaluation form to report residual limb shape, length, tissue consistency, and distal padding and residual limb conditions such as blisters. The independent-samples t-test or the Mann–Whitney U Test were used to assess whether specific residual limb conditions are related to child self-reported pain and Socket Comfort Score and whether there is a difference in residual limb health and self-reported pain between different types of surgical procedures (planned vs. unplanned).

The relationship between bone overgrowth and age at amputation was investigated using the independent-samples t-test or the Mann–Whitney U Test based on distribution normality.

The relationship between bone overgrowth and level of trans-osseous amputation (transtibial, transfemoral) was investigated using the Chi-square for independence test. If the assumption of the Chi-square for independence test was violated, Fisher's Exact Probability test was used. Children with a through-joint amputation (ankle- and knee-disarticulation) were excluded from this analysis as they do not present with this condition.³⁵

Results

Demographics

Thirty one children with a mean age of 13.1 ± 3.3 years were recruited, 16 from Cambodia and 15 from the UK. Participants presented with four levels of limb absence and a fairly equal distribution between congenital and acquired cases (Table 1). Children in Cambodia predominantly presented with a traumatic trans-osseous amputation, while children in the UK predominantly had an elective through-joint amputation for congenital differences. Prosthetic components available to children in the UK and Cambodia are reported in Supplemental Table S1.1.

Table 1.

Participant demographics for children in Cambodia (CAMB) and the United Kingdom (UK).

Demographics and amputation details. N_TOT = 31, N_UK = 15, N_CAMB = 16		N_TOT (%)	N_CAMB (%)	N_UK (%)
Sex	Female	8 (25.8)	2 (12.5)	6 (40)
Sex	Male	23 (74.2)	14 (87.5)	9 (60)
Side of Limb Loss	Unilateral	26 (83.9)	15 (93.8)	11 (73.3)
Side of Limb Loss	Bilateral	5 (16.1)	1 (6.3)	4 (26.7)
Acquired Limb Absence	Acquired	16 (51.6)	12 (75.0)	4 (26.7)
Acquired Limb Absence	Congenital^a	15 (48.4)	4 (25.0)	11 (73.3)
Reason for Limb Absence	Trauma	12 (38.7)	12 (75.0)	0 (0.0)
	Congenital^a	15 (48.4)	4 (25.0)	11 (73.3)
	Sepsis	2 (6.5)	0 (0.0)	2 (13.3)
	Cancer	2 (6.5)	0 (0.0)	2 (13.3)
Levels of lower limb absence presented for total number of limbs affected. N_TOT = 36, N_UK = 19, N_CAMB = 17		N_TOT (%)	N_CAMB (%)	N_UK (%)
Type of prosthesis supplied, as a proxy for level of lower limb absence or amputation	Ankle-Disarticulation	3 (8.3)	0 (0.0)	3 (15.8)
	Transtibial	16 (44.4)	9 (52.9)	7 (36.7)
	Knee-Disarticulation	10 (27.8)	2 (11.8)	8 (42.1)
	Transfemoral	7 (19.4)	6 (35.3)	1 (5.3)
	Years (Mean ± SD) (N)
Age at time of interview (years)	13.1 ± 3.3 (31)		13.3 ± 3.2 (16)	13.0 ± 3.5 (15)
Age of Acquired Amputation (years)	7.6 ± 3.9 (16)		8.1 ± 3.6 (12)	5.9 ± 4.8 (4)
Age of Elective Surgery Congenital Cases^a	4.2 ± 2.7 (11)		4.1 ± 4.3 (2)	4.2 ± 2.6 (9)

^a Four children with congenital limb absence did not have an elective amputation, two from the Cambodia cohort and two from the UK cohort.

Health-related quality of life

For the composite, UK and Cambodian cohorts, children with lower limb absence had lower psychosocial health, physical health and total scores compared to typically developing children (Table 2). There were no clinically important differences between geographic location for HRQoL scores (Table 2). Information on HRQoL scores for different sub-groups (sex, level of limb absence and aetiology) across the composite cohort, Cambodia and the UK are presented in Supplemental Material S2. The subgroup analyses did not identify a single factor consistently influencing HRQoL across both settings, underscoring the multifaceted nature of HRQoL and its sensitivity to a range of factors.

Table 2.

Health-related quality of life scores for children with lower limb absence compared to normative data for typically developing children.

	Typically developing children^a	Composite cohort
	Mean (SD) [95% Confidence intervals]		UK	Cambodia
Psychosocial Health Score	78.4 (N/A) [75.10–81.80]	69.53 (15.46) [63.86–75.20]	69.15 (17.75) [59.32–78.98]	69.89 (13.55) [77.11–62.67]
Physical Health Score	84.6 (N/A) [82.30–86.90]	64.07 (18.13) [57.42–70.72]	65.07 (18.67) [54.73–75.41]	63.14 (18.17) [53.46–72.83]
Total Score	80.90 (N/A) [78.60–83.20]	67.69 (15.01) [62.18–73.19]	67.58 (16.99) [59.17–76.99]	67.79 (13.46) [60.61–74.86]

Scores range from 0 to 100 (best health score). Bold results reached the minimal threshold for clinically important difference and non-overlapping confidence intervals between the three cohorts and the normative group. Composite cohort includes data from the UK and Cambodia (N_TOT = 31, N_UK = 15, N_CAMB = 16). Minimal Clinically Important Difference is 5.30, 6.66 and 4.36 for psychosocial, physical and total score, respectively.³⁰

^a Values from meta-analysis,³¹ including 66 research studies and 67,805 children.

Psychosocial and total health scores were significantly negatively correlated with age for the composite cohort and the UK cohort (Table 3). Psychosocial health score was significantly negatively correlated with pain for the composite cohort and the Cambodian cohort (Table 3). Within the UK cohort, age was also negatively correlated with the physical health score (Table 3).

Table 3.

Correlation analysis for health-related quality of life scores and age and pain.

Correlation parameters		Cohort	Correlation coefficient (ρ)	p-value
Psychosocial health score	Pain (Q1)	Composite	−0 . 327	0.036
		UK	−0.217	0.438
		Cambodia	−0.445	0.042
Physical health score	Pain (Q1)	Composite	0.009	0.481
		UK	−0.045	0.437
		Cambodia	−0.146	0.295
Total Score	Pain (Q1)	Composite	−0.207	0.132
		UK	−0.071	0.401
		Cambodia	−0.331	0.106
Psychosocial health score	Age	Composite	−0.394	0.014
		UK	−0.455	0.044
		Cambodia	−0.314	0.119
Physical health score	Age	Composite	−0.250	0.088
		UK	−0.505	0.027
		Cambodia	0.026	0.462
Total Score	Age	Composite	−0.364	0.022
		UK	−0.491	0.032
		Cambodia	−0.197	0.232

Composite cohort includes data from both the UK and Cambodia (N_TOT = 31, N_UK = 15, N_CAMB = 16). Bold results reached statistical significance for correlation (p < 0.05).

Children in Cambodia attending school for children with disabilities reported the highest HRQoL scores, which decreased for children in mainstream schools or not attending school at all (Figure 1). All children in the UK attended mainstream schools.

Figure 1.

Health-related quality of life scores for different levels of school attendance for children with limb absence in Cambodia (mean ± SD). The confidence intervals are wide and overlapping.

Pain

Children reported a mean pain level of 3.6 ± 2.9 (out of 10) across the cohorts (UK: 3.2 ± 3.2, Cambodia: 3.8 ± 2.7) and 74.2% of the children reported experiencing pain frequently (either sometimes or often). As the pain scores are not statistically different (p = 0.599), the descriptive results below are presented for the composite cohort, information for the Cambodia and UK cohorts can be found in Supplemental Material S3.

More children with a below-knee limb absence reported pain in the residual limb and other body parts (below-knee: 50.0%; above-knee: 31.3%). More above-knee children reported pain in their residual limb only (above-knee: 37.5%; below-knee: 31.3%), pain in other body parts only (above-knee: 12.5%; below-knee: 6.3%) and no body pain locations (above-knee: 18.8%; below-knee: 12.5%).

Pain location and intensity is visualised in Figure 2 for children across the cohorts who reported pain. Figures for each location are presented in the Supplemental Material (Figures S3.1, S3.2). Visually, children with below-knee limb absence are more affected in the residual limb side whereas children with an above-knee amputation are more affected in the lower back and intact joints (Figure 2).

Figure 2.

Heat map of composite cohort pain intensity for children with lower limb absence (above-knee left, below-knee right).

Residual limb conditions and socket comfort

Residual limb shape and clinical characteristics are reported in Table 4. Descriptively, children with a trans-osseous limb absence had shorter and more cylindrical/conical residual limbs, whereas some children with a disarticulation limb absence tended to have bulbous and longer residual limbs. Additionally, children with transtibial limb absence had more issues with distal end padding.

Table 4.

Residual limb shape classifications.

		Transfemoral (7)	Knee-disarticulation (10)	Transtibial (16)	Ankle-disarticulation (3)
		N (%)	N (%)	N (%)	N (%)
Residual Limb Shape	Conical	3 (33.3)	3 (30.0)	10 (62.5)	0 (0.0)
	Bulbous	0 (0.0)	3 (30.0)	0 (0.0)	3 (100.0)
	Cylindrical	4 (44.4)	2 (20.0)	4 (25.0)	0 (0.0)
	Missing data	0 (0.0)	2 (20.0)	2 (12.5)	0 (0.0)
Tissue Consistency	Soft	1 (11.1)	0 (0.0)	4 (25.0)	0 (0.0)
	Average	5 (55.6)	5 (50.0)	5 (31.3)	1 (33.3)
	Firm	1 (11.1)	1 (10.0)	4 (25.0)	2 (66.7)
	Prominent	0 (0.0)	2 (20.0)	1 (7.1)	0 (0.0)
	Missing data	0 (0.0)	2 (20.0)	2 (14.3)	0 (0.0)
Length	Short	2 (22.2)	1 (10.0)	5 (31.3)	0 (0.0)
	Medium	4 (44.4)	0 (0.0)	7 (43.8)	0 (0.0)
	Long	1 (11.1)	7 (70.0)	2 (12.5)	3 (100.0)
	Missing data	0 (0.0)	2 (20.0)	2 (14.3)	0 (0.0)
Distal end well padded?	Yes	7 (100.0)	5 (50.0)	9 (56.3)	3 (100.0)
	No	0 (0.0)	2 (20.0)	5 (31.3)	0 (0.0)
	Missing data/NA	0 (0.0)	3 (30.0)	2 (12.5)	0 (0.0)
Surgical line healed?	Yes	7 (100)	5 (50.0)	12 (75.0)	3 (100.0)
	No	0 (0.0)	0 (0.0)	0 (0.0)	0 (0.0)
	Missing data/NA	0 (0.0)	5 (50.0)	4 (25.0)	0 (0.0)

Prosthetists reported seven types of residual limb conditions across 13 children. These were: skin irritation (29.0%), bone overgrowth (25.9%), scar tissue (25.8%), suction discolouration (6.5%), blisters (3.2%), invagination (3.2%) and folliculitis (3.2%). About 19.2% also had one or more revision surgeries. No skin abrasion, skin breakdown, wounds, swelling, ulcers or eczema were reported. No difference in child reported pain or Socket Comfort Score was found for children with or without the residual limb conditions reported above. In 90.0% of skin irritation cases, prosthetists reported the socket to be the cause.

Children with unplanned surgery were significantly more likely to have extensive scar tissue (Fisher's exact test p = 0.021) and have hyper-flexion of their residual limb (from 2.6 ± 3.3 to 4.6 ± 1.6, Mann–Whitney U test, p = 0.027). No difference in child reported pain distribution for different surgical procedures was found.

Children with transtibial limb absence were significantly more likely (7/11) to have bone overgrowth than transfemoral cases (0/6; Fisher exact test p = 0.017). Children receiving an amputation at a younger age were significantly more likely to suffer from bone overgrowth (Mann–Whitney U test, p = 0.019). Bone overgrowth following acquired amputation was only observed in children who had their amputation below the age of 10 years.

Socket Comfort Score was generally high for the composite cohort (7.2 ± 2.2 out of 10). However, children in the UK using carbon fibre sockets reported a statistically significantly lower Socket Comfort Score than those using polypropylene sockets in Cambodia (Table 5). When considering the liner material, there were no significant differences demonstrating the importance of the material interface (Table 5).

Table 5.

Socket Comfort Score reported by children depending on material interface.

Material interface	Socket Comfort Score	p^a
Socket
Carbon Fibre (UK, N = 15)	6.4 ± 2.4	0.037
Polypropylene (Cambodia, N = 16)	8.0 ± 1.8	0.037
Socket and liner
Carbon Fibre with PE-lite liner (UK, N = 7)	6.3 ± 3.2	Not significant
Carbon Fibre with silicone liner (UK, N = 8)	6.5 ± 1.5
Polypropylene with PE-lite liner (Cambodia, N = 16)	8.0 ± 1.8

Bold results show statistical significance p < 0.05.

^a p calculated with Mann–Whitney U test for two groups comparison, with Kruskal–Wallis for three groups comparison.

Finally, Socket Comfort Score was positively correlated with physical HRQoL score (composite cohort: ρ = 0.398, p = 0.013, UK: ρ = 0.429, p = 0.055, Cambodia: ρ = 0.443, p = 0.043).

Discussion

A study in two global locations was conducted to assess quality of life, pain, residual limb conditions and socket comfort in children with lower limb absence.

As expected, children with lower limb absence experienced lower HRQoL than typically developing children with mental well-being declining with age. This decline mirrors general trends in adolescence,⁸ but is likely compounded by prosthetic challenges, social stigma, and body image concerns that are unique to limb absence.³⁶ Developmentally tailored psychological support is therefore essential. In particular, adolescents face increasing demands for independence, peer acceptance, and self-image,⁸ which are influenced by their prosthetic experience. Peer support interventions, shown to improve mental well-being in adult prosthesis users,³⁷ may have similar benefits in paediatric populations and warrant targeted implementation.

The data collection from two locations supported further assessment geographical contributions to decreased HRQoL in this cohort. However, despite different access to prosthetic technology and rehabilitation, no clinically important difference in HRQoL was observed between UK and Cambodian participants. This may reflect cultural or comorbidity-related influences. In Cambodia, Buddhist philosophies – emphasising acceptance and karmic causality – may foster psychological resilience and acceptance of disability.³⁸ Further research is needed to clarify how cultural frameworks interact with disability perception and coping mechanisms. At the same time, these insights should not diminish efforts to improve access to high-quality prosthetic components across all contexts. This result may also be explained by the steep decline in physical well-being with age observed in the UK cohort. The predominance of congenital limb absence and associated comorbidities in the UK subgroup likely contributes to this trend, compared to the Cambodian cohort where most children had traumatic amputations and fewer additional health conditions. For example, congenital fibular hemimelia is commonly associated with comorbidities,³⁹ whereas proximal femoral focal deficiency often necessitates surgery to stabilise the hip or knee. As children grow and use larger, heavier components, these limitations may become more apparent.

There was also a trend for school attendance to play a role in HRQoL, as previously found in another paediatric cohort.⁹ In Cambodia, children attending a school for children with disabilities reported improved well-being compared to those in mainstream schools or not attending school at all, suggesting that the benefits of being among peers with similar experiences are significant. This could not be assessed in the UK as all children attended mainstream schooling. However, while peer support may drive this trend, long-term reliance on protective environments may hinder later psychosocial adjustment. For instance, a Norwegian study of children with physical disabilities reported that even when attending mainstream schools, over half of the participants experienced periods of segregation leading to lower social interactions and participation in after-school activities.⁴⁰ National education strategies may address this by supporting inclusive practices in mainstream settings (e.g. adaptive physical education) while fostering meaningful peer-to-peer support through after-school inclusive activities, which enhance social participation and HRQoL of children.

Indeed, the results from HRQoL Supplementary Material S2 indicate that HRQoL is multifaceted and at present, few clear determinants exist. Within both cohorts, children with acquired amputation report some improved HRQoL outcomes compared with those with congenital limb absence. This finding disagrees with the literature,¹¹ but may be explained by previously discussed additional comorbidities of the congenital cohort. Additionally, contrasting HRQoL findings related to sex and level of amputation were observed between children in the UK and Cambodia, making it challenging to pinpoint shared determinants of HRQoL and highlighting the complex interplay of physical, social and demographic contributors. Further research is needed to investigate the varied factors at play.

Although children reported low pain, it was high in frequency, potentially indicative of chronic pain. Notably, pain was experienced in both the residual limb and secondary locations (e.g. intact joints and lower back), with strong negative correlations with psychosocial HRQoL, echoing patterns seen in adults.^3,14,15 Pain body mapping, used successfully for the first time in this paediatric context, revealed high residual limb pain in both above-knee and below-knee users, and substantial residual limb knee joint pain in the below-knee cohort. This is likely due to prosthetic use, suspension systems and trimline design, growth-related changes in socket fit,⁴¹ and residual and skin limb conditions such as bone overgrowth. Although children with below-knee limb absence also reported pain in secondary locations, children with above-knee absence reported greater intensity of secondary pain, especially in the lower back and intact limb joints, likely due to more asymmetrical gait and compensatory loading. Computational musculoskeletal modelling may help clarify the relationship between specific movement strategies and secondary pain, informing targeted gait training, strength conditioning and prosthetic alignment. Importantly, studies have shown that prosthetic design features can reduce asymmetrical loading,⁴² compensation, and in turn, pain.³ However, such innovations remain largely absent in paediatric prostheses, particularly in low-resource environments.⁴³

Socket comfort was strongly correlated with physical well-being, underlining the importance of fit and material choice. Children using polypropylene sockets reported higher comfort than those using carbon fibre-laminated sockets. Thermoformable materials may therefore offer practical advantages in growing children, as they are more compliant and allow for tailored adjustments and reheating, which are limited in laminated sockets.⁴¹ Improved socket design and adjustability could reduce pressure points, enhance fit over time and prevent pain escalation. The liner material, which is in direct contact with the residual limb, also plays a crucial role in comfort. In fact, when the liner material was included in the grouping, no significant differences were found between carbon fibre with PE-Lite, carbon fibre with silicone liners and polypropylene with PE-Lite liners. More data are needed to identify the ideal combination of materials for comfort, adjustability and cost.

Children presented with few residual limb conditions (namely skin irritation, bone overgrowth and scarring), which can impact physical mobility. Although in 90% of cases prosthetists attributed skin irritation to socket fit, no correlation was found between self-reported socket comfort and clinically observed residual limb conditions. This discrepancy suggests, in agreement with literature,⁴⁴ that children may underreport discomfort or tolerate pain, risking continued use of poorly fitting prostheses if unnoticed by clinicians or caregivers. Future work could explore objective tools for assessing socket fit, integrating child feedback with clinician assessment to proactively manage residual limb health and pain.

Children who underwent unplanned amputations (e.g. due to trauma or sepsis) showed worse residual limb outcomes, including significant scarring and contractures. This highlights the need for development and use of paediatric-specific surgical protocols to reduce long-term complications and allow for improved rehabilitation outcomes post injury/infection.⁴⁵ Given the rarity of childhood amputation, surgical teams may not always have the necessary expertise. Therefore, it is important that relevant resources are made more widely available. Bone overgrowth, particularly in transtibial cases with younger amputation age, remains a significant clinical challenge, as highlighted consistently in the literature,²² requiring further mechanobiological and surgical research to understand drivers and develop prevention or mitigation strategies.

This study is based on patient-reported outcome measures which are subjective and may not fully capture the complexity of children's experiences. However, as pain and HRQoL are subjective, self-report is the only mechanism of assessment. Although the results suggest that pain is chronic in this cohort, the cross-sectional nature of the study does not allow for definitive confirmation. Concerning the effects of school type on HRQoL, mean differences exceeded the established minimal clinically important difference thresholds, but there was considerable variability. As an exploratory study, the sample size was limited and may not be representative of the broader population of children with lower limb absence. Furthermore, outcome measures were delivered by prosthetists in Cambodia rather than independent researchers. This may have introduced response bias especially for socket comfort and pain. In some cases, prosthetists completed the clinical evaluation form after the appointment, which resulted in missing data and could have introduced inaccuracies due to recollection errors.

One finding disagrees with literature, potentially due to the small sample and contextual factors. Future studies should include a larger and more diverse cohort to validate and build upon these results. Additionally, all children using polypropylene sockets were from Cambodia, and those using carbon fibre sockets were from the UK, introducing potential biases when comparing Socket Comfort Score for different socket materials.

Differences in healthcare infrastructure and socioeconomic conditions likely influence prosthetic access and HRQoL, warranting further analysis. For instance, limited access to care may necessitate prolonged use of poorly fitting prosthesis (e.g. too tight or short) potentially resulting in socket-related pain, back problems or prosthesis abandonment. The cross-sectional nature of the study prevents assessment of such changes over time. Longitudinal studies are needed to track how outcomes such as pain, socket fit and HRQoL evolve throughout growth and rehabilitation, especially during critical periods such as puberty, acute care or prosthetic design transition phases.

This study highlights the complex, multidimensional needs of children with lower limb absence, offering insights into children's experiences of pain, HRQoL and socket comfort. Compared to peers, they reported lower HRQoL, which declined with age, indicating a need for ongoing psychological support. Pain was common and extended beyond the residual limb to secondary areas including intact joints and the back, with a strong negative correlation to HRQoL. This strongly reinforces the importance of appropriate paediatric pain management. Socket material influenced perceived comfort, and comfort correlated with physical well-being, underlining the importance of socket fit in paediatric users. Children who received unplanned surgical amputations reported worse outcomes than those with elective amputations, pointing to the need for tailored surgical protocols. Advancing care for this group requires increased mental-health support and rehabilitation, inclusive education, innovation in paediatric prosthetics and tailored pain and surgical management strategies.

Clinical messages

Psychological, age-appropriate support is essential as children experience a progressive decline in mental health with age.

Pain management must be prioritised as it negatively affects health-related quality of life and is present in multiple body locations.

Socket comfort impacts physical well-being, emphasising the importance of prosthetic fit in paediatric rehabilitation.

Surgical approach influences residual limb conditions, underscoring the value of paediatric-specific surgical and post-operative emergency protocols.

Supplemental Material

sj-docx-1-cre-10.1177_02692155261462423 - Supplemental material for Pain and health-related quality of life for children with lower limb absence: An exploratory study

Supplemental material, sj-docx-1-cre-10.1177_02692155261462423 for Pain and health-related quality of life for children with lower limb absence: An exploratory study by Claudia Ghidini, Caitlin E. Edgar, Chanthearin Ry, Yean Yong, Phanith Karng, Jamie Heaffey, Amy Arnott, Val Jacques-Robinson, Sherron Furtado, Thearith Heang, Alasdair Gilbertson, Craig Gerrand, Sisary Kheng and Anthony M. J. Bull in Clinical Rehabilitation

Supplemental Material

sj-docx-2-cre-10.1177_02692155261462423 - Supplemental material for Pain and health-related quality of life for children with lower limb absence: An exploratory study

Supplemental material, sj-docx-2-cre-10.1177_02692155261462423 for Pain and health-related quality of life for children with lower limb absence: An exploratory study by Claudia Ghidini, Caitlin E. Edgar, Chanthearin Ry, Yean Yong, Phanith Karng, Jamie Heaffey, Amy Arnott, Val Jacques-Robinson, Sherron Furtado, Thearith Heang, Alasdair Gilbertson, Craig Gerrand, Sisary Kheng and Anthony M. J. Bull in Clinical Rehabilitation

Supplemental Material

sj-docx-3-cre-10.1177_02692155261462423 - Supplemental material for Pain and health-related quality of life for children with lower limb absence: An exploratory study

Supplemental material, sj-docx-3-cre-10.1177_02692155261462423 for Pain and health-related quality of life for children with lower limb absence: An exploratory study by Claudia Ghidini, Caitlin E. Edgar, Chanthearin Ry, Yean Yong, Phanith Karng, Jamie Heaffey, Amy Arnott, Val Jacques-Robinson, Sherron Furtado, Thearith Heang, Alasdair Gilbertson, Craig Gerrand, Sisary Kheng and Anthony M. J. Bull in Clinical Rehabilitation

Supplemental Material

sj-png-4-cre-10.1177_02692155261462423 - Supplemental material for Pain and health-related quality of life for children with lower limb absence: An exploratory study

Supplemental material, sj-png-4-cre-10.1177_02692155261462423 for Pain and health-related quality of life for children with lower limb absence: An exploratory study by Claudia Ghidini, Caitlin E. Edgar, Chanthearin Ry, Yean Yong, Phanith Karng, Jamie Heaffey, Amy Arnott, Val Jacques-Robinson, Sherron Furtado, Thearith Heang, Alasdair Gilbertson, Craig Gerrand, Sisary Kheng and Anthony M. J. Bull in Clinical Rehabilitation

Supplemental Material

sj-png-5-cre-10.1177_02692155261462423 - Supplemental material for Pain and health-related quality of life for children with lower limb absence: An exploratory study

Supplemental material, sj-png-5-cre-10.1177_02692155261462423 for Pain and health-related quality of life for children with lower limb absence: An exploratory study by Claudia Ghidini, Caitlin E. Edgar, Chanthearin Ry, Yean Yong, Phanith Karng, Jamie Heaffey, Amy Arnott, Val Jacques-Robinson, Sherron Furtado, Thearith Heang, Alasdair Gilbertson, Craig Gerrand, Sisary Kheng and Anthony M. J. Bull in Clinical Rehabilitation

Footnotes

Acknowledgements

Perry Diggins, Mark Croysdale, Paul Gandrapu, Certified Prosthetists and Orthotists from the RNOH prosthetic team, are gratefully acknowledged for their support in participants recruitment and data collection. Deborah Eastwood, Consultant Paediatric Orthopaedic Surgeon, is gratefully acknowledged for their support. Anna Gibby, PhD student in paediatric pain, is kindly acknowledged for their contribution. The authors wish to thank all the incredible children who participated in this study as well as their families.

ORCID iDs

Claudia Ghidini

Caitlin E. Edgar

Jamie Heaffey

Amy Arnott

Val Jacques-Robinson

Sherron Furtado

Ethical considerations and consent to participate

This study was approved by the National Ethics Committee for Health Research of Cambodia (NECHR_24), Wales Research Ethics Committee (21/WA/0027) and the local institutional ethics committee in the UK (ICREC_6609720). Individual participant assent and written legal guardian consent were collected.

Funding

This work was supported by multiple funding sources: Save the Children UK, the UK Engineering and Physical Sciences Research Council (EPSRC) Grant EP/S02249X/1 for the Centre for Doctoral Training in Prosthetics and Orthotics, the RNOH Charity and Skeletal Cancer Trust. This funding supported the study design, data collection, analysis and interpretation of data, as well as writing of the manuscript.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Data availability statement

Data are available at .

Supplemental material

Supplemental material for this article is available online.

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