The Pediatric Toronto Extremity Salvage Score (pTESS): Validation of a Self-reported Functional Outcomes Tool for Children with Extremity Tumors.

BACKGROUND: The physical function of children with sarcoma after surgery has not been studied explicitly. This paucity of research is partly because of the lack of a sufficiently sensitive pediatric functional measure. The goal of this study was to establish and validate a standardized measure of physical function in pediatric patients with extremity tumors. QUESTIONS/PURPOSES: (1) What is the best format and content for new upper- and lower-extremity measures of physical function in the pediatric population? (2) Do the new measures exhibit floor and/or ceiling effects, internal consistency, and test-retest reliability? (3) Are the new measures valid? METHODS: In Phase 1, interviews with 17 consecutive children and adolescents with bone tumors were conducted to modify the format and content of draft versions of the pediatric Toronto Extremity Salvage Score (pTESS). In Phase 2, the pTESS was formally translated into French. In Phase 3, 122 participants between 7 and 17.9 years old with malignant or benign-aggressive bone tumors completed the limb-specific measure on two occasions. Older adolescents also completed the adult TESS. Floor and ceiling effects, internal consistency, test-retest reliability, and validity were evaluated. RESULTS: Feedback from interviews resulted in the removal, addition, and modification of draft items, and the pTESS-Leg and pTESS-Arm questionnaires were finalized. Both versions exhibited no floor or ceiling effects and high internal consistency (α > 0.92). The test-retest reliability was excellent for the pTESS-Leg (intraclass correlation coefficient [ICC] = 0.94; 95% CI, 0.90-0.97) and good for the pTESS-Arm (ICC = 0.86; 95% CI, 0.61-0.96). Known-group validity (ability to discriminate between groups) was demonstrated by lower mean pTESS-Leg scores for participants using gait aids or braces (mean = 68; SD = 21) than for those who did not (mean = 87; SD = 11; p < 0.001). There was no significant difference between pTESS arm scores among respondents using a brace (n = 5; mean = 73; SD = 11) and those without (n = 22; mean = 83; SD = 19; p = 0.13). To evaluate construct validity, we tested a priori hypotheses. The duration since chemotherapy correlated moderately with higher pTESS-Leg scores (r = 0.4; p < 0.001) but not with pTESS-Arm scores (r = 0.1; p = 0.80), and the duration since tumor resection correlated moderately with higher pTESS-Leg scores (r = 0.4; p < 0.001) but not pTESS-Arm scores (r = 0.2; p = 0.4). Higher VAS scores (that is, it was harder to do things) antecorrelated with both pTESS versions (pTESS-Leg: r = -0.7; p < 0.001; pTESS-Arm: r = -0.8; p < 0.001). To assess criterion validity, we compared the pTESS with the current "gold standard" (adult TESS). Among adolescents, strong correlations were observed between the TESS and pTESS-Leg (r = 0.97, p < 0.001) and pTESS-Arm (r = 0.9, p = 0.007). CONCLUSIONS: Both pTESS versions exhibited no floor or ceiling effects and had high internal consistency. The pTESS-Leg demonstrated excellent reliability and validity, and the pTESS-Arm demonstrated good reliability and reasonable validity. The pTESS is recommended for cross-sectional evaluation of self-reported physical function in pediatric patients with bone tumors. LEVEL OF EVIDENCE: Level II, outcome measurement development.

Transition to adult-oriented health care: perspectives of youth and adults with complex physical disabilities.

INTRODUCTION: The transition to adulthood is extremely difficult for individuals with disabilities. We sought to explore the specific issue of transition to adult-oriented health care in a Canadian context. METHODS: We conducted semi-structured individual interviews with 15 youth and 15 adults with cerebral palsy, spina bifida, and acquired brain injuries of childhood, and their parents (n = 30). Respondents discussed their health care services, their experience with clinical transition, and contributing factors. We analyzed the transcripts using qualitative methods. RESULTS: All participants identified challenges in transition, including: lack of access to health care; lack of professionals' knowledge; lack of information and uncertainty regarding the transition process. Two solutions were identified: early provision of detailed information and more extensive support throughout the clinical transition process. DISCUSSION: The challenges of clinical transition were universal. More extensive information and support is needed during transition to ensure an efficient move to appropriate adult-oriented health care.

Taking the call-bell home: a qualitative evaluation of Tele-HomeCare for children.

Tele-HomeCare (THC) delivers health care at home using telephone technologies. A THC service was developed as an adjunct to existing hospital and community care systems. It connected healthcare providers to children and families at home, during the initial transition from hospital to home, using video-conferencing phones and remote vital signs monitors. The goal was to support the transition from hospital to home, for children with subacute healthcare needs. This paper reports the qualitative evaluation of THC and describes the experiences of families supported by THC. A total of 16 mothers, four fathers and two adolescents from 16 families participated in a series of interviews conducted before, during and after THC. The interviews focused on the impact of THC on the children, on the families, and on their overall healthcare experience. Analysis of their accounts identified three subthemes: the stable child, a sense of security, and the healthcare-proficient parent. These subthemes were consistent across all time points and participants. Together they contributed to the overall effect of THC: the timely reunification of the family at home. THC was consistently reported to be an important resource that supported children and families during the transition from hospital to home. The benefits to children and families observed in this study may have also been a consequence of returning to their home environment, since THC allowed these children to be discharged home at a much earlier period. However, our findings are consistent with previous reports of the benefits of THC. Thus, THC is a successful method of healthcare service delivery that enables a safe return home with professional support provided remotely.

Gas fireplace contact burns in young children.

Contact burns from domestic appliances are common in young children. Recently, gas fireplaces have been recognized as a potential cause of contact burns in young children. We sought to quantify the frequency of gas fireplace contact burns in young children, to identify the etiology of contact, to describe the clinical presentation, and to describe clinical outcomes. Children with gas fireplace contact burn injuries presenting to The Hospital for Sick Children in Toronto (1999-2002) were identified using three data sources: the Canadian Hospitals Injury Reporting and Prevention Program Database, the Burn Unit Registry, and the Rehabilitation Services Database. Demographic, clinical, and outcomes data were collected on all children. During the 4-year study period, 27 children presented to the hospital because of a gas fireplace contact burn (approximately 9% of all contact burns). The median age of the children was 14 months (range, 8-36 months), with 16 boys (59%). Most children were burned in their own home. With regard to etiology, 10 children (37%) lost their balance near the fireplace, 2 (7%) walked too close to the glass front, and 8 (30%) touched the glass front out of curiosity. Almost half (44%) of the children burned the palms and digits of both hands. The median total burn surface area was 1% (range, 0.2-2.5%). In total, 30% of children were admitted to hospital, and 11% required skin grafts. All children had full wound closure after 4 to 43 days. Given the etiology of these burns (loss of balance or curiosity), passive prevention, such as barriers or changes in the composition of glass panels, may be the most effective approach to combat them.

What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida.

OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations. DATA SOURCES: We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups. STUDY SELECTION: All studies meeting the inclusion criteria were included. DATA EXTRACTION: Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size. DATA SYNTHESIS: We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements. CONCLUSIONS: This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.

An examination of quality of life of children and parents during their Tele-Homecare experience.

Video-conferencing and remote vital signs monitors were used to provide Tele-HomeCare (THC) to children with complex healthcare needs. This paper reports the effects of THC on the health-related quality of life (QoL) of children and their parents, and the Impact on Families (IoF). A total of 63 children and their parents were enrolled in a THC trial in which they received traditional home care services and up to 6 weeks of THC. A reference group of 16 children and their parents was also recruited and received only traditional home care services. All parents completed QoL questionnaires for both their child and themselves, and the IoF scale. Complete data were available for 50 THC participants: 34 of these had no readmissions and 16 experienced multiple admissions. The reference group contained 10 participants who received standard community care. All three groups experienced similar improvements in quality of life at the time of their discharge to home after which their QoL remained stable. There were no significant differences in the IoF scores. THC is an effective clinical service that supports the transition from hospital to home at a time when the children continued to have complex care needs. Furthermore, improvements in QoL were observed for these families that were similar to those of families whose children had less intensive care needs. Moreover, the improvements were sustained beyond the termination of the THC service and were not associated with additional burden on families.

The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury.

A group of 100 adults and 190 youth who have cerebral palsy (CP), spina bifida (SB), and acquired brain injuries from childhood (ABIc) participated in a multi-method study focused on the transition to adult health care. The results show that 95% of youth and 61% of adults were living with their parents; 23% of the youth and 55% of adults were employed; and 60% of youth and 42% of adults reported "excellent" or "very good" health. The lowest health scores were reported by adults with SB. These findings provide a starting point for examining health issues specific to youth and young adults with CP, SB, and ABIc.

Preference for pediatric telehome care support following hospitalization: a report on preference and satisfaction.

Infants and children hospitalized with complex conditions often face sudden and dramatic reduction in supervision and monitoring after discharge. A telehome care program was designed to improve the transition home for these children by integrating visiting home care services with outreach from pediatric nurses located in the hospital via videoconferencing. Children were recruited into a trial of telehome care for up to 6 weeks following discharge. Parental preference for this service was measured prior to and following participation. There were 10 enrollments in the pilot stage and 57 during the trial. These children had serious chronic conditions with comorbidity. The majority had a cardiac, respiratory, or otolaryngolic primary diagnosis. More than half of the respondents (59%) indicated strong preferences for telehome care prior to participation. The satisfaction for care delivered at home was no different from care in the hospital. There was no difference in satisfaction or preference observed by sociodemographic factors, diagnosis, or clinical circumstance. Parents with children who have significant health care needs have a strong preference for and satisfaction with telehome care. Additional evidence on costs and benefits may be important for promoting further development of this type of service.

Telehomecare: a comparison of three Canadian models.

The delivery of health care is often segmented into sectors. In Canada, hospital care has traditionally been distinct from community care, and thus the transition of patients across sectors has been challenging. This paper focuses on the systematic development of an integrated model of care for children, for the purpose of smoothing the transition from hospital to home. The new service model uses emerging telecommunications technology to link hospital care providers to patients at home and is termed "telehomecare" (THC). Independent models of THC were developed for three sites across Canada through semistructured interviews and focus groups. Participants included health care providers and administrators from the hospital and community, and patient families. The resulting models were compared using content analysis to determine whether there was a core model of THC that was generalisable across Canada. A core model of THC was identified that includes the use of videoconferencing to enable the integration of hospital- and community-based care to support patients during the initial stages of the transition to home. Each site also articulated unique characteristics in their service model that were related to the nature of their health care delivery system and patient population. This paper describes the core model of transitional care, presents a synopsis of each of the three models, and compares the models. THC provides opportunities to address limitations in the current system and to improve upon equity of access to quality care for children making the transition from hospital to home.