Maartje de Wit|Katarzyna Anna Gajewska|Eveline Goethals|Vincent McDarby|Xiaolei Zhao|Given Hapunda|Alan M. Delamater|Linda A. DiMeglio
<scp>ISPAD Clinical Practice Consensus Guidelines</scp> 2022: Psychological care of children, adolescents and young adults with diabetes
Vrije Universiteit Amsterdam|Amsterdam University Medical Centers|University College Cork|KU Leuven|Children's Health Ireland at Crumlin|Affiliated Hospital of Southwest Medical University|University of Zambia|University of Miami|University of Miami|Riley Hospital for Children|Indiana University – Purdue University Indianapolis
ageappropriate validated assessment tools routinely implemented clinical practice monitor discuss overall psychosocial wellbeing quality life qol youth diabetes include wellbeing caregivers b interdisciplinary team assess general family functioning stress conflict cohesion adaptability parental psychopathology diabetesrelated functioning communication parental involvement support roles responsibilities selfmanagement behaviors especially periods transition eg diagnosis start new treatment plan adolescence may cultural family based difficulties adjustment diabetes b referral mental health professional recommended necessary e biopsychosocial model proposes understanding illness requires understanding complex interactions biology eg genes viruses psychology eg mood behavior social factors eg family society1 treatments must include attention domains diagnosed diabetes childhood adolescence interfere normative developmental changes interact psychological social factors youth families integrated collaborative care therefore necessary although routine psychosocial screening pediatric diabetes clinics effectively identifies youth struggling psychosocial problems facilitates referrals appropriate care resources screening referral alone sufficient ensure care actually received2 integrated care models ensure youth diabetes access mental health care35 screening programs initiated also must process appropriate referrals address identified concerns review main findings studies stress resilience coping psychological psychiatric problems neurocognitive functioning integration psychosocial assessments also discuss importance diabetes context including family dynamics social support diabetes team given rapid technological advances diabetes management review psychological advantages challenges technology conclude chapter review psychological behavioral interventions children adolescents diabetes based research findings recommendations optimal psychological care offered detailed executive summary section 2 childhood adolescence challenging developmental stages young children get stressed navigating social worlds particularly family school friendships6 adolescence characterized major physical hormonal psychological changes hence described period stress storm chronic illnesses diabetes exacerbate stress children adolescents7 8 uncommon children adolescents diabetes report stress7 9 relationship stress diabetes suggested bidirectional stress increase risk t2d living diabetes also cause stress1013 managing diabetes family conflicts around diabetes management dealing diabetes emotions often major source stress8 adversities pandemics covid19 also accentuate stress levels persons already affected diabetesspecific stress example perceived increased risk death due covid19 breakdowns supply chain affecting access insulin supplies contributed anxiety stress family related diabetes care management14 stressors subjective interpretation perception stressors actual exposure stress events vary depending age geography socioeconomic factors developing well highincome countries low income major stressor15 16 race ethnicity sociodemographic factors also associated stress17 18 coping strategies19 assessment stressors therefore part personcentered care diabetes distress also referred diabetesrelated diabetesspecific distress emotional response living managing diabetes one three adolescents t1d9 one three adolescents young adults t2d20 60 emerging adults21 report elevated diabetes distress although longitudinal studies scarce diabetes distress also seems persist time22 diabetes distress best viewed expected emotional response diabetes comorbid disorder constant demands diabetes management including relentless treatment tasks decisionmaking key contributors diabetes distress particularly constant efforts always lead expected outcomes diabetes distress may negatively impact engagement treatment subsequent glucose outcomes22 although coexist diabetes distress differs conceptually depression requires different care pathway23 diabetes burnout relatively new yet wellresearched concept without widely used psychometric scale term diabetes burnout relates high levels diabetes distress andor depression produce significant barriers diabetes management glycemic management24 characterized feelings mental emotional physical exhaustion living diabetes leading detachment diabetes ignoring selfmanagement responsibilities25 consequence burnout may lead experience detachment self support systems eg years attending diabetes appointments associated lack acceptance condition24 concept mainly described adults diabetes t1d t2d children adolescents parentscarers diabetes burnout scale dbs measures diabetes burnout specifically recently validated adults26 investigation concept youth diabetes particularly young adults parents warranted diabetes resilience achievement optimal diabetes outcomes ie high engagement selfmanagement behaviors close target glycemic outcomes despite numerous challenges inherent diabetes27 attention protective skills behaviors ie strengths promote resilient outcomes enhance understanding adjustment diabetes implications clinical care strengths include confidence selfefficacy manage demands diabetes seeking receiving developmentally appropriate help support family others adaptability handle unpredictable diabetesrelated challenges eg effective problemsolving coping2731 children families use adaptive coping strategies problemsolving better qol family functioning report fewer depressive anxiety symptoms3236 maladaptive coping strategies avoidance associated significant diabetesspecific distress suboptimal diabetes management including fewer glucose checks less frequent selfcare behaviors15 34 evidencebased interventions children diabetes cognitive behavioral therapy interventions promote parental involvement goal setting problemsolving9 reduce family conflict37 may helpful promoting resilience addressing stress interventions relieve stress enhance social support parentscaregivers also needed clinical care37 38 based evidence large populationbased cohort studies youth young adults t1d twice likely diagnosed psychiatric disorder especially eating mood anxiety behavior disorders peers without diabetes3941 adhd personality disorders substance use disorders especially males also common39 multimorbidities common 1 5 youth two psychiatric diagnoses39 overall psychiatric disorders associated abnormal selfmanagement eg insulinmanipulation lower qol42 43 children adolescents diabetes increased rates eating disorders ed disordered eating behaviors deb rates compared peers without diabetes4447 issues especially magnified older adolescents young adults consequences eating disorders disordered eating include increased risk frequency dka accelerated development vascular complications mortality48 49 even mild symptoms relevant impact selfmanagement50 population cohort studies show 110 adolescents young adults t1d ed3941 bulimia specified feeding eating disorders common anorexia nervosa51 longitudinal studies youth t1d reveal ed behaviors symptoms likely persist become severe young adulthood50 52 ed youth diabetes often associated comorbid psychiatric disorders suboptimal glycemic management relationships disordered eating depression symptoms anxiety symptoms lower qol populations t1d t2d53 bidirectional risk factors eating disorders disordered eating include female gender related societal pressure thin pubertal changes dka hyperglycemia54 debs dietary restriction intentional insulin omission55 prevalent eating disorders children t1d debs affect 3050 females 1020 males51 youth t2d prevalence deb found 5053 youth t2d deb significantly higher bmi lower insulin sensitivity depressive symptoms poorer qol without deb differences males females53 maladaptive family environment eg lack family mealtime structure parentchild relationship quality together parents personal eating attitudes eg weightshape concerns habits eg attempts weight loss negative comments childs weight important comes deb children56 debs often go unnoticed adolescents young adults refrain open providers always feel equipped identify talk them57 58 usually symptomatic raises attention hcps frequent hospital admissions associated dka given high prevalence serious consequences calls routine monitoring screening eating behaviors stepped approach starting screening detailed assessment following positive screens could considered facilitate discussion clinical practice57 initial elevation depressive symptoms anxiety diagnosis often transitional normal adaptive response59 thereafter symptoms depression anxiety increase longer disease duration corresponding childrens experience diabetes management implications difficult upsetting smaller group children psychological problems persist59 youth t1d increased risk elevated selfreported depressive symptoms compared peers prevalence rates ranging 17 63 depending population study design diagnostic tool6062 core symptoms include low mood enjoyment negative cognitions although coexistent irritability oppositional behavior may lead missed diagnosis somatic symptoms fatigue brain fog may overlap t1d symptoms hypo hyperglycemia european populationbased studies also show increased risk diagnosed mood disorders youth t1d boys girls3941 females youth history depressive episodes especially increased risk despite increased risk depression populationbased studies find increased risk suicide attempts youth t1d compared peers39 40 fewer studies conducted youth t2d today study prevalence elevated depressive symptoms youth t2d 15 comparable us population without diabetes63 search study report prevalence rates t2d specifically however males t2d reported increased risk elevated depressive symptoms compared males t1d64 recent studies canada us showed increased risk depressive disorders well attempted completed suicides youth t2d compared peers without diabetes20 65 longitudinal studies show mixed results regarding fluctuations depressive symptoms glycemic changes withinperson increases depressive symptoms 6 months associated concurrent declines glycemic management66 however 3 5year longitudinal studies adolescents young adults t1d show significant withinperson associations fluctuations depressive symptoms glycemic management changes6769 anxiety characterized predominance exaggerated fear worry dysfunctional coping behaviors eg preoccupation avoidance feared situations experiences use safety behaviors mitigate perceived threats adrenergic symptoms generalized anxiety described free floating continual symptoms specific focus substantial comorbidity anxiety depression counter chronic uncomfortable feelings anxiety person compensate avoiding many stressful experiences possible context diabetes behaviors could include attending appointments checking blood glucose levels taking insulin studies anxiety symptoms children adolescents t1d mixed although 32 may elevated anxiety symptoms may higher compared peers without diabetes62 70 however children young adults t1d youth t2d increased risk diagnosed anxiety disorders compared controls varying 11 324043 65 7173 highest risk onset diabetes age 10 14 years increasing risk diabetes duration39 children diabetes anxiety disorders risk suboptimal glycemic outcomes hospitalizations suboptimal selfmanagement lower qol depressive symptoms higher family conflict peers diabetes without anxiety disorders74 75 recent studies seem show similar prevalence rates depressive anxiety symptoms disorders general pediatric population possibly reflecting advances diabetes treatment awareness mental health problems73 76 nevertheless 1 7 young people diabetes experience psychological problems tend increase diabetes duration remain elevated young adults type 1 t2d68 76 77 high prevalence possible detrimental impact psychological symptoms disorders diabetes selfmanagement qol4 66 indicates ongoing monitoring screening integration psychological support care youth diabetes warranted approach outlined also easy access consulting psychiatrists cases involving severe psychopathology potential need psychotropic medications growing evidence documents children adolescents t1d risk pathophysiological brain changes7884 neurocognitive deficits eg memory learning executive functioning82 83 8590 healthy peers although limited research youth t2d also shows deficits memory processing speed compared youth without diabetes matched obesity status9193 intelligence quotient iq scores youth diabetes statistically significantly lower peers without t1d82 however iq scores youth diabetes typically well within average range clinical impact might minimal addition lower iq youth diabetes risk specific neurocognitive deficits information processing difficulties attention memory processing speed learning disabilities problems executive functions82 9093 executive functions involve goaloriented behavior key skills selfmanagement planning problemsolving organization executive function deficits make diabetes selfmanagement difficult turn difficulties selfmanagement could lead worsening glycemic outcomes9497 may lead dysfunctional cycle brain injury even greater neurocognitive function deficits83 additionally worse executive functions linked lower qol mental health problems98100 hypoglycemia hyperglycemia dka especially recurrent impact school functioning educational attainment via combination mechanisms including altered cognitive function nonattendance acute treatment101 however findings regarding impact t1d academic performance young people mixed older studies reported young people t1d lower academic performance compared peers siblings without t1d102 103 recent studies found differences academic performance compared peers104107 evidence young people optimal glycemic management perform better academically104 105 107 several illnessrelated risk factors contribute greater risk brain changes neurocognitive deficits youth t1d early age diabetes onset specific risk factor decline iq time neurocognitive deficits88 108 recent research suggests hightime outside range tir percentage time blood glucose levels target range 3910 mmoll 70180 mgdl negatively impacts brain development youth t1d84 dka particularly time diagnosis decline iq time andor neurocognitive deficits109111 protective strategies also identified improving child sleep continued family support reducing caregiver distress use diabetes technology82 95 collectively studies identified early disease onset factors experienced around onset higher hba1c severe hypoglycemic events dka major contributors initial cognitive decrements limited decline cognitive abilities experienced later diagnosis hypothesized early disease factors provide initial strike brain adapts new situation fluctuating glucose levels112 search diabetes youth study found acquired knowledge obesity depression contribute executive functioning youth t1d t2d differences executive functioning observed youth t2d compared t1d part attributable differences factors93 interdisciplinary diabetes teams aware risk protective factors neurocognitive deficits youth types diabetes ideally questionnaire performancebased measures neurocognitive function available assessment mental health specialist youth diabetes risk show signs neurocognitive deficits dealing diabetes selfmanagement tasks eg planning prioritizing given critical role selfmanagement psychosocial factors impacting diabetes outcomes qol imperative psychological assessment integrated routinely clinical diabetes care validated psychological questionnaires instrumental screening assessment measures facilitate addressing relevant psychosocial needs dialog person diabetes family part routine diabetes team consultations113 114 use assessments feasible accepted children youth diabetes families hcps helps focus clinical encounter psychosocial factors facilitate shareddecision making drive care decisions instead mainly focusing outcomes hba1c tir4 114 115 routine assessments shown positively impact wellbeing satisfaction care young people diabetes114 116 117 without direct impact selfmanagement glycemic outcomes113 115 choice assessment tool depends purpose age literacy person diabetes children age 8 years onwards generally able complete selfreport questionnaires younger children often parentproxy measures used although instruments enabling assessment child available118120 generic questionnaires used across different populations capture common aspects persons life allowing comparison normative populations diabetesspecific questionnaires tap sensitive symptoms problem areas experienced young people diabetes diabetesspecific measures considered deb assessment generic measures might capture behaviors part treatment eg carbohydrate counting calorie restriction adverse effects treatment excessive hunger secondary hypoglycemia addition generic measures able capture insulin restriction omission lose weight several standardized validated measures available providers monitor wellbeing screen psychological difficulties young people diabetes113 121 122 monitoring tools track changes time across broad range domains become part personcentered care feedback provided person diabetes clinical consultation123 example routine monitoring hrqol facilitates discussion youth diabetes clinicians regarding psychosocial concerns well different domains hrqol impact diabetes selfmanagement wellbeing113 115 117 screening tools help identify problems may gone otherwise unnoticed often score weighted based norm scores example screening depressive symptoms cutoff used screen young people risk clinical depression4 124 screening especially importance adolescence young adulthood critical developmental periods psychological problems first arise125 routine screening psychological difficulties 12 years onwards least year recommended comprehensive psychosocial screening feasible efficiently detect potential mental health problems issues impacting diabetes management4 many instruments developed monitor qol screen psychological problems adolescents113 121 126 127 instruments capture specific developmental domains young adults128 standardized validated questionnaires psychosocial monitoring screening diagnosis used stepped approach positive findings leading evaluation4 5 starting informal verbal inquiries monitoring wellbeing andor qol including mood distress positive responses probed additional questions andor use standardized measures finally structured interviews diagnosis formal diagnostic assessments interviews conducted qualified mental health professional familiar care young people diabetes help guide selection appropriate intervention mental health specialists train members health care team screening instrument use formal assessments used must process appropriate referrals mental health specialists address identified concerns screening referral alone sufficient impact clinical psychological outcomes ensure referrals done mental health care actually received2 integrated care models critical35 diabetes selfmanagement effective context collaborative interpersonal relationships129 130 involves family context peers diabetes team social ecological theory biopsychosocial model consider social environment interpersonal context illness key understanding development behavior youth diabetes improve health outcomes131 132 interactions youth diabetes environments reciprocal individuals characteristics interact uniquely environment creating developmental context specific individual view helps explain differing developmental trajectories outcomes individuals diagnosis diabetes131 parental wellbeing affects childrens outcomes levels psychological distress among parents children diabetes greater parents children without diabetes133 many parents report significant distress childs diabetes diagnosis difficulty coping childs diabetes management32 parental depression anxiety symptoms common months following diagnosis symptoms posttraumatic stress due new responsibilities134137 nearly one five parents reporting distress 4 years diagnosis138 parents younger children report allencompassing impact due constant worry perceived need vigilance139 fear hypoglycaemia parents younger children distress caring child diabetes affect parental wellbeing relationships could turn affect parenting behavior childs glycemic management17 139142 greater social support associated less stress parents children recent diagnosis diabetes143 connecting parents caring child t1d provide valued emotional practical support diabetes technology use could also lessen burdens139 literature specific impact t2d youth parental wellbeing scarce parental wellbeing coping also impacts childs physical mental health parents adjustment difficulties greatly stressed studies indicate also less diabetes management selfefficacy children behavioral psychological problems144148 although studies conducted mothers important consider fathers well since paternal psychological maladjustment predicted suboptimal glycemic management children 5 years diagnosis149 avoidant coping fathers related increased parenting stress involved diabetes management150 providing psychological support parents important clinical need helping parents lead effective management diabetes151 152 parenting family interventions instrumental discussed section 10 parent support levels parent involvement family conflict parenting style familyparentchild relationship quality associated psychological health outcomes youth diabetes associations varying parent gender child age demographic factors153 continued parental involvement diabetes care throughout adolescence young adulthood beneficial154 155 premature transition responsibility may detrimental156 involves parental monitoring child behavior favorable effects youth internalizing externalizing symptoms153 especially close parental monitoring selfmanagement tasks requiring executive functioning skills like problemsolving impulse control warranted prevent glycemic outcome declines95 way parents involved childs management matters diabetesspecific family conflict negatively affects treatment plan glycemic management well qol depressive andor anxiety symptoms young people157 overinvolvement unsupportive behaviors nagging could adverse effects140 158 parenting styles important family interactions authoritative responsive style ie clear levels expectations selfmanagement warmth sensitivity associated better selfmanagement eg checking blood glucose levels frequently making healthy food choices glycemic management less overweight therefore perhaps preventive t2d conversely psychological control associated suboptimal outcomes155 159 benefits authoritative parenting style transcend ethnicity socioeconomic status household composition159 studies explored relationship quality child psychological health generally found cohesive family relationships associated lower youth externalizing symptoms may relationship higher quality family relationships lower internalizing youth t1d especially youth color153 addition warm accepting environment associated better physiologic psychosocial outcomes154 158 although research social context youth diabetes focused family environment children get older particularly adolescence peer relationships become important supportive friends complement parents involvement psychological outcomes160 161 yout