An exploratory assessment of pediatric patient and parent needs after implantable cardioverter defibrillator implant

Abstract

Background Placement of an implantable cardioverter defibrillator (ICD) is often accompanied by psychological adjustment issues in pediatric patients and their parents. Although anxiety, depression, and lowered quality of life have been seen in these patients, no studies have investigated patient or parent reported needs. This exploratory study describes the needs of pediatric ICD patients and parents and assesses whether patient factors of age, gender, depression, and anxiety are associated with specific needs. Methods ICD patients ages 8‐21 years and their parents completed a needs analysis survey assessing various domains of functioning. Patients also completed self‐reported measures of depression and anxiety. Results Thirty‐two patients (28% female) and their parents (72% mothers) completed the survey. Patients’ most frequently endorsed needs involved educational issues: understanding their cardiac event/diagnosis (34%), medications (34%), and how the ICD would change their lifestyle (31%). Parents’ most frequently endorsed needs involved family issues; almost half of parents (47%) were concerned about their children's frustration with their overprotectiveness and 28% were concerned with their child feeling depressed or anxious. Patients who reported feeling overprotected (12.1 ± 3.4 vs 17.4 ± 3.5 years; P = .001) were significantly younger than those who did not. Experiencing peer issues was more frequently endorsed by females than males (33% of females vs 4% of males; P = .026). Conclusions ICD patients and parents endorsed markedly different needs. Patients focused on understanding their ICD, whereas parents were more focused on their children's emotional needs. Novel ways of educating patients about their device and clinic‐based screenings of emotional functioning may serve to meet these needs.

Indications and management of implantable cardioverter-defibrillator therapy in childhood hypertrophic cardiomyopathy

“…A recent explorative study investigating unmet needs in implantable cardioverter-defibrillator paediatric patients and parents indicated knowledge and understanding of cardiac events in addition to how an implantable cardioverter-defibrillator will affect their lives, as most imported unmet needs for the patients. 131 For the parents, their focus on over-protectiveness and their children's emotional needs appeared to be unmet needs. Further research is needed to investigate the potential benefits of additional tools aiming to help patients better understand their new recommended lifestyle and medical conditions.…”

Unmet supportive care needs of families of children with chronic illness: A systematic review

“…Three quantitative studies reported longitudinal data (Collier et al, 2001; Karst et al, 2018; McNelis et al, 2007). Most papers explored unmet needs associated with children with cancer ( n = 26), five examined the unmet needs of children with CHD (Cruz et al, 2022; Lesch et al, 2014; Levert et al, 2017; Schneider et al, 2020; Wray & Maynard, 2006), two assessed needs associated with children with asthma (Archibald et al, 2015; McNelis et al, 2007) and one for mixed conditions (Diabetes and renal disease; Collier et al, 2001). Most studies were from North America ( n = 12) followed by Europe ( n = 10) and Asia ( n = 8).…”

“…Six studies assessed parent-reported needs only, two reported the child's perspective only (Lesch et al, 2014;Lewandowska et al, 2021) and five studies assessed both parent and child needs (Ellis & Leventhal, 1993;Levine et al, 2019;Ljungman et al, 2003;Mitchell et al, 2006;Schneider et al, 2020; See Table 3). Six studies (Lewandowska, 2022;Lewandowska et al, 2021;Ljungman et al, 2003;Mitchell et al, 2006;Rao et al, 2022;Schneider et al, 2020) need assessment tools varied across studies, with three using a standardised scale (Arabiat & Altamimi, 2013;Moody et al, 2011;Schneider et al, 2020). The majority of studies reported the proportion of respondents endorsing each need item, whereas one study reported means for each need item.…”

“…illness, daily living, lifestyle, etc.) and practical or emotional support (Lesch et al, 2014;Schneider et al, 2020).…”

Cognitive and Psychological Outcomes Following Pediatric Cardiac Arrest

“…Research in children who have congenital heart defects ( 43 ) or who undergo cardiac surgery ( 44 ) indicates that some will experience considerable traumatic stress and even meet diagnostic criteria for posttraumatic stress disorder (PTSD). Furthermore, a recent study found that in a sample of patients aged 8–21 years assessed a mean of 2.6 years following cardioverter defibrillator implant, 25% met the clinical cutoff for anxiety and 19% met the clinical cutoff for depression on self-report measures ( 45 ). Importantly, there is potential for psychological treatment to address post-traumatic stress and reduce anxiety in children following cardiac arrest.…”