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Xxx00.#####.ppt 3/31/2017 2:37:13 PM Assessing and Managing Symptoms and Co-Morbidities In Children with Complex Medical Conditions Melody Brown Hellsten.

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Presentation on theme: "Xxx00.#####.ppt 3/31/2017 2:37:13 PM Assessing and Managing Symptoms and Co-Morbidities In Children with Complex Medical Conditions Melody Brown Hellsten."— Presentation transcript:

1 xxx00.#####.ppt 3/31/2017 2:37:13 PM Assessing and Managing Symptoms and Co-Morbidities In Children with Complex Medical Conditions Melody Brown Hellsten MS PNPPC-BC Texas Children’s Hospital Advanced Practice Providers Conference

2 Objectives 1) Identify 5 common symptoms and co-morbidities in children with complex medical conditions 2) Evaluate symptom assessment tools for children with complex medical conditions 3) Discuss pharmacologic and non-pharmacologic management strategies for symptoms and co-morbidities for children with complex medical conditions

3 The Population Children with Complex Chronic Conditions (CCC)
Chronic, irreversible condition requiring ongoing medical care Life-threatening/Life Limiting Illnesses Medically Fragile Technology Dependent Increased risk of symptoms and suffering due to medical condition, treatment Probability of premature death in childhood, adolescents or early adulthood

4 Primary Diagnoses Cancer and Hematologic conditions
Shattering Silos: Integrated Care for Children with Complex Chronic Conditions Primary Diagnoses Cancer and Hematologic conditions Congenital Anomalies Static and Progressive Neurologic disorders Neuromuscular disorders HIV Metabolic Disorders End-stage organ failure Neurological Devastation/Trauma Cystic Fibrosis Rare/Orphan Conditions This presentation is the intellectual property of the presenters. Please contact them for permission to copy or redistribute

5 Symptom Burden in CCC Cancer
pain, fatigue, sleep disturbance, loss of energy, nausea and vomiting, hair loss, and behavior and mood changes Report up to 11 symptoms per week Higher severity associated with lower health related QOL

6 Symptom Burden in CCC Cystic Fibrosis (Dellen et al 2010)
Dyspnea (100%) Fatigue (96%) Anorexia (85%) Anxiety (74%) Cough (56%) Symptom control ‘somewhat good’ 71% Medications/treatments caused discomfort but were felt to be necessary

7 Symptom Burden in CCC Metabolic Disease (Malcolm, C 2011)
Batten; Sanfilippo; Morquio Pain, cold hands/feet, joint stiffness, disturbed sleep Agitation, repetitive behaviors, nausea/vomiting, constipation, diarrhea Cough, choking, drooling, muscle spasms, seizures, breathing difficulties, secretions, sleep problems, Pain, spasms, seizures and breathing were most difficult to control Sanfilippo had most symptom frequency and severity, followed by Batten, then Morquio

8 Symptom Management - Parents
Families employ numerous pharmacologic and non-pharmacologic strategies to provide symptom relief for their children Parent intuition, knowledge, experience; home management; flexibility in medication management; expertise in condition/management over time Worry and distress about uncontrolled symptoms creates a sense of helplessness that leads to seeking medical attention Parents value advice from providers who understand the disease and their child

9 Challenges for Providers
Difficulty assessing symptom due to communication challenges Most challenging symptoms Behavioral; seizure Relentless nature of symptoms as disease progresses leads to sense of helplessness

10 Symptom Assessment

11 Challenges in Symptom Assessment and Management
Children are living longer with complex medical conditions Worsening with disease progression Cognitive and communication impairments Numerous care providers Ambulatory Care; Inpatient Care; Community based care Wide range of disease management options Pharmacological Technological Supportive Multidimensional/Inter-related nature of distress

12 Multidimensional Distress
Child Family Physical Emotional Social Spiritual

13 Multidimensional Distress
Cancer CF Sickle Cell Pain; Dyspnea; Fatigue Emotional Coping; Sadness; Worry Social Isolation; withdrawal Spiritual Mortality; Faith; Hope

14 Inter-related Distress
Child Disease Co/Multi morbidity Symptoms Complications/Side Effects

15 Inter-related Distress
Child HIE Gastroparesis Feeding Difficulties Vomiting ConstipationSeizures VP Shunt Complications Gastrostomy complications Medication SE

16 Symptom Assessment Understand pathophysiology, progression of disease
Hunt – Three forms of knowing (disease, patient, science) Comprehensive history & exam Pertinent diagnostic evaluations Symptom management plan Determine child and family’s priority symptoms Clarify goal of intervention from family perspective Thinking outside the box

17 Symptom Assessment Use a standardized patient/parent assessment tool when possible Provides consistency in assessment Allows for evaluation of symptom management Symptom tools vs QOL tools Tools for research vs clinical use Pain/Symptom Diaries Symptom, frequency, intensity Pain Management Log Multiple symptom templates available online Easily created on MS Word or Excel tables

18 Multidimensional Pain Assessment
Self report/parent report Intensity Quality Pattern Aggravating / alleviating factors Medication history Meaning

19 l------------------------l
Pain – Self Report Faces Scales Visual-Analog l l no pain worst pain 0-10 Verbal Report Scale 0 = no pain, 10=worst pain ever Wong Baker, 1998

20 Multivariate Tools – Self Report
Initial Pain Assessment Tool Brief Pain Inventory Parent / Child Total Quality Pain Instruments Foster & Varni 2002 Children 8-12 and parents Neuropathy Pain Scale Pain Measures of quality and intensity of neuropathic pain Adolescent Pediatric Pain Tool ) (Savedra et al., 1993) Good for ages 8 and up, chronic and acute pain

21 Pain – Non Verbal Proxy Non-Communicating Children’s Pain Checklist-Revised(Breau and others, 2002) Validated in children age 3-18 Non-communicating children Proxy reporter of child in past 2 hrs 7 domains w/ total of 30 observations Vocal, social, facial, activity, body/limbs, physiological, eating/sleeping 0-3 scale of severity of behavior per obs Total score of 7 or more indicates child has pain

22 Pain – Non Verbal Proxy Paediatric Pain Profile (Hunt and others, 2004) Validated in children age 3-18 Non-communicating children Proxy reporter of child in past 2 hrs 7 domains w/ total of 30 observations Vocal, social, facial, activity, body/limbs, physiological, eating/sleeping 0-3 scale of severity of behavior per obs Total score of 7 or more indicates child has pain

23 Pain – Non Verbal Proxy Revised FLACC pain tool(Voepel-Lewis et al 2002) 5 domains, 0-2pts per domain Original scale for infant assessment Revised scale adds behavioral cues characteristic of NI children, parents able to add individual behaviors Good reliability, validity

24 Pain – Non Verbal Proxy Individualized Numeric Rating Scale (Solodiuk & Curley, 2003) Distorted face, increased tone Happy expression Restless, squirming Crying, tremors MILD MODERATE SEVERE Reposition Check tubes/equip Change loction Cuddle/Comfort Tylenol/Ibuprofen Bathe Massage Heating Pad Combo opioid Distraction ER Pure opioid

25 Symptom Assessment Tools
Cancer SSPedi – Tomlinson et al (2014) not validated as yet 15 item screening tool with 5 point Likert Not at all bothered to extremely bothered MSAS 7-12, – Collins (2000, 2002) 7-12 measures 8 common symptoms, measures up to 30, Global Distress Scale – 10 items Obtains presence of symptom, frequency, severity, distress Cancer Fatigue Scale – Hinds et al (2007) 14 items related to fatigue, 11 items measuring causes of fatigue

26 Symptom Assessment Tools
Muscle Tone Clinical measures of upper limb impairment (Randall 2012) Modified Melbourne Assessment (2, 3, and 4 yrs) 16 items representative of main components of upper limb movement: grasp, reach, release, manipulation Quality of Upper Extremity Skills Text (18mo-18 yrs) 4 domains: dissociated movements, grasp, weight bearing, protective extension Hypertonia Assessment Tool Differentiates dystonia, spasticity, rigidity

27 Symptom Assessment Tools
Dyspnea Breathlessness VAS (Tosca, 2011) Used in Asthma 10 cm line – 0 breathlessness, 10 no breathlessness Cut off value of 6 correlated with bronchial airflow limitation Modified Borg Scale – (Hommerding, 2010) Evaluated in Cystic Fibrosis patients Vertical scale 0-10; 0 no symptoms, 10 maximum symptom Used with 6 min walk test to provide information regarding patient level of distress Pediatric Dyspnea Scale (Kahn, 2009) Asthma Picture of 7 faces smiling to crying with chest tightness represented by lungs tied with rope successively tighter Dalhousie Dyspnea Scale (McGrath, 2005) Measures three factors of dyspnea: throat closing, chest tightness, effort Pictures with slide rule : boy running, lungs tied with rope, trachea tied with rope

28 Symptom Management Inter disciplinary family-­centered care is an integral part of the symptom management for a chronically ill child. Family shapes types of interventions Illness Experience QOL and Sources of Suffering Goals of Care Curative/Restorative Life Prolongation Quality EOL

29 Disease Trajectory Goal Morbidity Attitude Disease effect
Cure High Win Eradicate Prolong life Moderate Fight Response Prolong life Minimal Live with it Arrest growth End of life Mild Surrender None Original slide design – J. Kane MD

30 Anticipatory Guidance
This is what parents want from us! Majority of parents prefer partnership, want information, but ultimately feel responsible for final decision Most presenting co-morbidities will have more than one potential intervention Align interventions with child/family goal for the symptom or problem Difficult symptom management decisions Surgery Balancing disease directed therapy and comfort Technology

31 Symptom Management - Neuro
Symptoms Seizures Temperature irregularity Choking/ Aspiration Resp infections UTIs Constipation Scoliosis Pain Comorbidity Epilepsy Dysautonomia Dysphagia Chronic lung Dz Neurogenic bowel/bladder Dystonia Diseases CNS malformation HIE Cerebral Palsy Neurodegenerative

32 Management (Hauer, 2010) Dysautonomia (variable HR, HTN, temp instability, flushing/sweating/pallor; GI, posturing) Pharmacologic – gabapentin; cyproheptadine; clonidine; morphine Non-Pharm – related to presenting issue Dystonias (hypertonia, hypotonia, spasticity, rigidity) Pharmacologic – Benzodiazepines; baclofen, botox, gabepentin Non-pharmacologic – range of motion/therapies, bracing, massage, warmth, swaddling Invasive – Rizotomy, rods/titanium ribs, baclofen pump Dysphagia (reflux, choking, drooling, aspiration, +/-cough) Pharmacologic – PPIs/H2 Non-pharm – oral motor therapy, neuromotor electrical stim; thickened feeds Invasive – gastrostomy +/- fundoplication, G/Jujuneostomy

33 Symptom Management - Respiratory
Symptoms Tachypnea Tachycardia Dyspnea Cough Sleep disturbance Headaches Irritability Fatigue Comorbidity Chronic Infections Obstructive Sleep Apnea Hypo ventilation Chronic respiratory failure Diseases Fibrotic disease Neuro-degenerative Obstructive lung disease Metastatic malignancy Thoracic Insufficency

34 Management - Respiratory
Dyspnea, secretions, chronic respiratory failure Pharmacologic – morphine, anxiolytics, bronchodilators, ipratropium,expectorants/mucolytics, steroids; antibiotics, glycopyrolate (may cause mucous plugs) Non-pharm – circulating air, oxygen, cool environment, energy sparing activities Advanced – BiPAP; cough assist, Interpulmonary Percussive Ventilation Death by respiratory failure Frightening to most families Discuss ways to keep patient comfortable Role of hypercapnea in relaxing, sedating Prepare family for end-stage breathing patterns

35 Symptom Management - Gastrointestinal
Symptoms Nausea/ Vomiting Constipation Anorexia/ Cachexia Pain Diseases Neuro and neurodegenerative Metabolic disorders Cystic Fibrosis Solid Tumors Comorbidity Immobility Feeding Intolerance Gastroparesis Bowel Obstruction Polypharmy

36 Management - Gastrointestinal
Nausea/Vomiting Pharmacologic – based on underlying cause prokinetics, ondansetron, scopolamine, corticosteroids; cannabinoid Non-pharm – aroma therapy, relaxation breathing Constipation Opioid induced – stool softeners/laxitives, fluids as needed, Methylnaltrexone Dysmotility – prokinetics, erythromycin, PEG Obstruction – steroids, decompression, surgical management Non-pharm – abdominal massage, LE ROM/Bicycle movements Anorexia/Cachexia Normal and expected symptom in advanced disease Familys worry about ‘starvation’ – patients do not report ‘starvation’

37 Summary Children with complex medical conditions experience significant symptom burden throughout their disease process Anticipating, assessing and managing symptoms on a regular basis is imperative Develop symptom management plans with parents/children based on symptoms most distressful to them Clarify goals of care, child/parent hopes and potential for symptom management interventions to achieve their goals

38 References Collins JJ, Byrnes ME, Dunkel IJ, et al. The Measurement of Symptoms in Children with Cancer. Journal of pain and symptom management. 2000;19(5): Collins JJ, Devine TD, Dick GS, et al. The Measurement of Symptoms in Young Children With Cancer: The Validation of the Memorial Symptom Assessment Scale in Children Aged 7–12. Journal of pain and symptom management. 2002;23(1): Miller E, Jacob E, Hockenberry MJ. Nausea, Pain, Fatigue, and Multiple Symptoms in Hospitalized Children With Cancer. Oncology Nursing Forum. 2011;38(5):E Hockenberry MJ, Hooke MC, Gregurich M, McCarthy K, Sambuco G, Krull K. Symptom clusters in children and adolescents receiving cisplatin, doxorubicin, or ifosfamide. Oncology Nursing Forum. 2010;37(1):E Baggott CR. An evaluation of the factors that affect the health-related quality of life of children following myelosuppressive chemotherapy. Supportive care in cancer. 2011;19(3): Pritchard M, Burghen EA, Gattuso JS, et al. Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. Journal of pain and symptom management. Apr 2010;39(4): Fakhry H, Goldenberg M, Sayer G, et al. Health-Related Quality of Life in Childhood Cancer. Journal of developmental and behavioral pediatrics : JDBP. July/August 2013;34(6): Woodgate RL, Degner LF. Expectations and beliefs about children's cancer symptoms: perspectives of children with cancer and their families. Oncology Nursing Forum. 2003;30(3): Woodgate RL, Degner LF, Yanofsky R. A different perspective to approaching cancer symptoms in children. Journal of pain and symptom management. 2003;26(3): Baggott C, Cooper BA, Marina N, Matthay KK, Miaskowski C. Symptom cluster analyses based on symptom occurrence and severity ratings among pediatric oncology patients during myelosuppressive chemotherapy. Cancer nursing. Jan-Feb 2012;35(1):19-28 Hockenberry MJ. Sickness behavior clustering in children with cancer. Journal of Pediatric Oncology Nursing. 2011;28(5):263

39 References Hauer J. Identifying and managing sources of pain and distress in children with neurological impairment. Pediatric annals. 2010;39(4): ; quiz Hauer JM. Respiratory symptom management in a child with severe neurologic impairment. Journal of palliative medicine. Oct 2007;10(5): Klick JC, Hauer J. Pediatric palliative care. Current problems in pediatric and adolescent health care. Jul 2010;40(6): Dellon EP, Shores MD, Nelson KI, Wolfe J, Noah TL, Hanson LC. Family Caregiver Perspectives on Symptoms and Treatments for Patients Dying From Complications of Cystic Fibrosis. Journal of pain and symptom management. 2010;40(6): McGrath P, Pianosi P, Unruh A, Buckley C. Dalhousie dyspnea scales: construct and content validity of pictorial scales for measuring dyspnea. BMC pediatrics. 2005;5(1):33. Malcolm C, Adams S, Anderson G, et al. The symptom profile and experiences of children with rare life-limiting conditions: Perspectives of their families and key health professionals. University of Stirling: Cancer Care Research Centre;2011. Foster RL, Varni JW. Measuring the Quality of Children's Postoperative Pain Management: Initial Validation of the Child/Parent Total Quality Pain Management (TQPM™) Instruments. Journal of pain and symptom management. 2002;23(3): Savedra MC. Assessment of postoperation pain in children and adolescents using the adolescent pediatric pain tool. Nursing research (New York). 1993;42(1):5-9. Breau LM, McGrath PJ, Camfield CS, Finley GA. Psychometric properties of the non-communicating children's pain checklist-revised. PAIN. 2002;99(1–2): Hunt A, Goldman A, Seers K, Crichton N, Moffat V, Oulton K. Clinical validation of the Paediatric Pain Profile. Developmental Medicine & Child Neurology. 2004;46(1):9-18. Voepel-Lewis T, Merkel S, Tait AR, Trzcinka A, Malviya S. The reliability and validity of the Face, Legs, Activity, Cry, Consolability observational tool as a measure of pain in children with cognitive impairment. Anesthesia and analgesia. Nov 2002;95(5): , table of contents. Solodiuk J, Curley MAQ. Pain assessment in nonverbal children with severe cognitive impairments: the individualized numeric rating scale (INRS). Journal of pediatric nursing. 2003;18(4): Tomlinson D. Initial development of the Symptom Screening in Pediatrics Tool (SSPedi). Supportive care in cancer. 2014;22(1):71-75. Hinds PS, Hockenberry M, Tong X, et al. Validity and Reliability of a New Instrument to Measure Cancer-Related Fatigue in Adolescents. Journal of pain and symptom management. 2007;34(6): Randall M. Further evidence of validity of the Modified Melbourne Assessment for neurologically impaired children aged 2 to 4 years. Developmental medicine and child neurology. 2012;54(5): Tosca MA. Breathlessness perception assessed by visual analogue scale and lung function in children with asthma: a real-life study. Pediatric allergy and immunology. 2012;23(6): Hommerding PX. The Borg scale is accurate in children and adolescents older than 9 years with cystic fibrosis. Respiratory Care. 2010;55(6): Khan FI. Pediatric Dyspnea Scale for use in hospitalized patients with asthma. Journal of allergy and clinical immunology. 2009;123(3):

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