Browse Items (106 total)

Tags: 2023, Article, Bolance C, Camprodon-Rosanas E, Child, Clinical Article, Controlled Study, Cross-sectional Study, Demography, Emotion, emotional well-being, Female, Guillen M, health practitioner, Human, Limonero JT, Male, May List 2023, Navarro Vilarrubi S, Palliative And Supportive Care, Palliative Care, Palliative Therapy, Perception, Pilot Projects, Pilot Study, psychologic assessment, School Child, Toro-Perez D, vision, Visual Analog Scale, Wellbeing

Tags: 2023, Adolescent, Adult, Article, Chronic Disease, Chronic Patient, Clinical Article, Collins S, Controlled Study, Data Analysis, Expectation, Female, Hart M, Human, Interview, Lebeau K, Male, Marchi E, May List 2023, Palliative And Supportive Care, Palliative Therapy, Personal Experience, Phenomenology, Pomeranz JL, psychosocial care, Qualitative Analysis, Questionnaire, solidarity, Walker D, Young Adult, Zori G

Tags: 2022, Awareness, BMJ Supportive and Palliative Care, Child, Child Death, Clinical Article, conference abstract, Data Analysis, England, Female, Hospice, Hospice Care, Hospital Admission, Hospital Mortality, Human, information center, Male, March List 2023, Medical History, Only Child, Opstad H, Palliative Therapy, Patient Referral, Prevalence, Retrospective Study, Social Care, time of death

Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, Clinical Article, conference abstract, Controlled Study, Conversation, Female, Hospice, Hospice Care, Human, Human Experiment, Laidlaw S, Male, March List 2023, O'Connor J, Pediatric, Psychological Well-being, Rahman F, Scotland, Social Care, Trust, Wales, Wellbeing, Wylie F, Young Adult

Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, Clinical Article, conference abstract, Drug Withdrawal, Female, Finlinson H, Health Care Delivery, Hospice, Human, Human Experiment, Interview, Learning, Male, March List 2023, outcome assessment, Palliative Therapy, positive feedback, Questionnaire, Sibling, Spathis A, Trust, Young Adult

Tags: 2022, Bereavement, Child, Childhood Cancer, Clinical Article, communication protocol, conference abstract, Consultation, Female, Foldesi E, genetic transcription, Hauser P, Hegedus K, Human, Hungary, Male, March List 2023, Nonverbal Communication, Nyiro J, Palliative Therapy, Pediatric Blood and Cancer, Semi Structured Interview, Terminal Care, Zorgo S

Tags: 2022, Advance Care Planning, Article, Bereavement, Bereavement Support, care behavior, Child, Cho-Hee K, Clinical Article, Content Analysis, Controlled Study, December List 2022, diagnosis related group, Female, Hee-Young S, Human, Journal of Hospice and Palliative Nursing, Kyung-Ah K, Male, Min-Sun K, Myung-Nam L, Palliative Therapy, Qualitative Research, Semi Structured Interview, South Korea, Spiritual Care, Yi-Ji M

Tags: 2020, Adolescent, Article, Carcinoma, Child, Clinical Article, Complementary Therapies in Medicine, Controlled Study, Expectation, Female, Follow Up, Genik L M, Human, Leukemia, Lymphoma, Male, Marshall S, Massage, McMurtry C M, Oncology 2020 List, Pain, Pain Measurement, Palliative Therapy, patient worry, Pilot Study, Quality Of Life, Quantitative Study, Rapoport A, Sarcoma, Stinson J

Tags: 2020, Adolescent, Adult, Advance Care Planning, Article, Attention, Blume E D, Child, Clinical Article, Cousino M K, Cross-sectional Study, Decision Making, Female, heart graft, Human, Lowery R, Male, May 2020 List, Miller V A, Palliative Medicine, Patient Participation, Pilot Study, Prognosis, Rottach N, School Child, Schumacher K R, Smith C, Uzark K, Young Adult

Tags: 2020, Adolescent, Adult, April 2020 List, biomedical technology assessment, Bone Marrow Transplantation, Calcagni C, Caregiver, Child, Clinical Article, conference abstract, Controlled Study, Disease Burden, enzyme replacement, European Quality of Life 5 Dimensions Questionnaire, Female, Follow Up, France, Germany, Howie K, Human, Human Tissue, Infant, Institutional Review, Interview, investment, juvenile, Male, Metachromatic Leukodystrophy, Molecular Genetics and Metabolism, Multicenter Study, Palliative Therapy, Pang F, Patient Advocacy, Patient Care, preliminary data, Quality Of Life, Recall, Sample Size, Shapovalov Y, Walz M, Wellbeing, Wilds A

Tags: 2020, accident, Adult, April 2020 List, Article, Attention, care behavior, Child, Clinical Article, Clinical Practice, Cohort Analysis, Consultation, England, Female, Fraser L K, general practice, Health Care Utilization, Hewitt C, Hospital Patient, Human, Icd-10, Jarvis S, Male, Mitchell S, Parslow R C, Patient Care, Primary Health Care, Read code, Retrospective Study, secondary health care, The British journal of general practice : the journal of the Royal College of General Practitioners.

Tags: 2020, April 2020 List, Article, body mass, Bone Density, bone strength, botulinum toxin, Child, Clinical Article, contracture, Controlled Study, Dangel T, Densitometry, Dystonia, facilitation, Female, femur, Home Care, Hospice And Palliative Care Nursing, Human, hypersalivation, iron, Januszaniec A, ketogenic diet, Kmiec T, Male, Multidisciplinary team, neurodegeneration with brain iron accumulation, Neurological Sciences, Pain, Palliative Therapy, pathologic fracture, Prevention, Questionnaire, School Child, skeleton, Spasticity, Spine, Thorax, Wazny B

Tags: 2019, Bills O, Child, Clinical Article, conference abstract, Female, Follow Up, Human, Male, March 2020 List, Moore D, Organization, Palliative Therapy, Pediatrics, season, social media, Total Quality Management, touch

Tags: 2020, Adult, Aggression, Bower K A, California, Child, Clinical Article, clinical assessment, conference abstract, Current Procedural Terminology, Drug Safety, Female, Human, Journal of Pain and Symptom Management, Kuelker A, laptop, logging, Male, Marc-Aurele K L, March 2020 List, Medicaid, Nurse, Palliative Therapy, Patient Comfort, physical examination, Stevens V, Telemedicine, vital sign, Young Adult

Tags: 2019, Child, Clinical Article, conference abstract, Controlled Study, Female, Goloff N, Hematology, Human, Kamrath H, Male, March 2020 List, Norbie E, Pain, Pediatrics, Resuscitation, Simulation, Skill, Teaching, Terminal Care, Woll A

Tags: 2020, Child, Clinical Article, Comfort, community hospital, conference abstract, Consensus, Education, Evan E, Feasibility Study, Female, Follow Up, Human, Human Experiment, Journal of Pain and Symptom Management, Likert scale, Male, March 2020 List, Mock K O, Palliative Therapy, Primary Health Care, program feasibility, Questionnaire, Sandesara A, Satisfaction, Telehealth, tertiary care center, Total Quality Management

Tags: 2020, Attitude, Caucasian, Child, Clinical Article, Comfort, conference abstract, Controlled Study, Delaney C, Female, Human, Journal of Pain and Symptom Management, Likert scale, March 2020 List, Maurer S, Moehling K, Palliative Therapy, pediatric patient, Resident, Role Playing, Wilcoxon signed ranks test

Tags: 2019, Article, cancer center, Child, Childhood Cancer, Clinical Article, Ethics, Female, Friedman D N, Human, invasive procedure, Male, McCabe M S, Oncology 2019 List, Pediatric Blood and Cancer, pediatric patient, Pediatrics, Physician, Resuscitation, Retrospective Study, Risk Benefit Analysis, Terminal Care, Voigt L P, Winter M C

Tags: 2019, Adult, Advanced Cancer, advanced practice provider, Aged, avoidance behavior, Barton K, Childhood Cancer, Clergy, Clinical Article, Cohort Analysis, conference abstract, Content Analysis, Controlled Study, Female, genetic transcription, Human, Male, Medical Staff, music, Oncology 2019 List, Pediatric Blood and Cancer, Pediatric Hospital, physiotherapist, Prospective Study, Rosenberg A, Semi Structured Interview, Software, sudden death, Taylor M, Terminal Care, Young Adult

Tags: 2019, Adolescent, Adult, Article, Barnett M, Bereavement, Brief Symptom Inventory, Caregiver, Child, Childhood Cancer, Clinical Article, Complicated Grief, Controlled Study, Female, Grief, Health Care Personnel, Human, Infant, Journal of Palliative Medicine, Madan-Swain A, Male, mental function, Oncology 2019 List, Perception, prolonged grief, Questionnaire, Reynolds N C, Schaefer M R, Spencer S K, support group, time of death

Tags: 2019, Adult, Article, Awareness, Child, Childhood Cancer, Clinical Article, Controlled Study, De Clercq E, Education, Elger B, Female, Human, Journal Of Pediatric Oncology Nursing, Male, Nurse, Oncologist, Oncology 2019 List, outpatient care, Palliative Therapy, personnel shortage, Politics, Qualitative Research, Rakic M, Reimbursement, Rost M, Social Worker, Switzerland, Thematic Analysis, Wangmo T

Tags: 2019, Adolescent, Adult, Adverse Drug Reaction, anxiety, Article, Bar-Sela G, burn, Cancer Patient, Cancer Therapy, Child, Childhood Cancer, Clinical Article, Drug Safety, Drug Therapy, Female, Human, Male, medical cannabis, Medical Marijuana, microcapsule, Mood, Nausea And Vomiting, Ofir R, Oncology 2019 List, Pain, Palliative Therapy, Pediatric Hematology and Oncology., Pediatric Oncology, Postovsky S, prescription, Side Effect, Sleep, smoke, Smoking, Supportive Care, throat, vaporization, Weyl Ben-Arush M, Young Adult

Tags: 2020, Analgesia, Article, Boyle P J, Child, Clinical Article, Comfort, Controlled Study, Expectation, Female, Human, Lee B K, Male, Marcus K J, Oncology 2019 List, Palliative Therapy, Pediatric Blood and Cancer, pediatric patient, Perception, Prospective Study, Quality Of Life, Questionnaire, radiation oncology, Radiotherapy, Side Effect, Wolfe J, Zaslowe-Dude C

Tags: 2018, 52315-07-8 (cypermethrin), 65731-84-2 (cypermethrin), 66841-24-5 (cypermethrin), 67375-30-8 (cypermethrin), Bereavement Support, Bourque C J, Cardinal G, Child, Clinical Article, Clinician, conference abstract, Confidentiality, Content Analysis, Controlled Study, cypermethrin, Death, Dumont E, evaluation research, Female, filter, Follow Up, Human, information center, Intensive Care, Interview, Journal of Pain and Symptom Management, Male, Neonatology, nesting, Oncology 2019 List, Palliative Therapy, Pediatrics, Psycho-Oncology, Questionnaire, research ethics, Sultan S, writing

Tags: 2018, Adolescent, Adult, Arakawa A, cancer center, Cancer Patient, Cancer Staging, Child, Clinical Article, conference abstract, Controlled Study, Female, Home Care, Human, Ishiki H, Ishimaru S, Kumamoto T, Male, Nakajima M, Ogawa C, Oncology 2019 List, Pediatric Blood and Cancer, Retrospective Study, Satomi E, Shimizu M, Shirakawa N, Social Worker, Sonoda T, time of death, Young Adult

Tags: 2019, Adolescence, Adolescent, Adult, Albrecht U V, Anthropometry, Article, Breathing, Child, chronic lung disease, Clinical Article, Controlled Study, Cystic Fibrosis, Disability, Dittrich A M, Dopfer C, February 2020 List, Female, Fuge J, Hansen G, Human, JMIR mHealth and uHealth, Junge S, Life Expectancy, life satisfaction, lung function, Male, mobile application, mobile phone, Nolte H, Pieper K, Quality Of Life, Questionnaire, responsibility, Ringshausen F C, Rudolf I, Sauer-Heilborn A, Self Care, Tummler B, von Jan U, Young Adult

Tags: 2018, Bereavement, care behavior, Child, Clinical Article, Comfort, conference abstract, Controlled Study, Curriculum, February 2020 List, Female, Human, Human Experiment, Jones A, Learning, Likert scale, Male, Medical School, medical student, pediatric oncologist, Pediatrics, preclinical study, Rolfes M, Starr S, Sunde K, Terminal Care

Tags: 2019, Annals of Intensive Care, Artificial Ventilation, bradycardia, Brain Death, Caregiver, Cause Of Death, Child, Chronic Disease, Clinical Article, conference abstract, cyanosis, Drug Withdrawal, edema, February 2020 List, Human, Hypotension, Le Bourgeois F, Male, Naudin J, Neurologic Disease, pallor, Pediatric Intensive Care Unit, petechia, Pierron C, Poncelet G, Prospective Study, respiratory failure, skin color, Sommet J, time of death

Tags: 2016, Adolescent, Adult, Ajmone P, American Journal of Medical Genetics Part C - Seminars in Medical Genetics, Article, body mass, Canevini M P, characteristics, Child, Clinical Article, Comorbidity, Controlled Study, De Lange syndrome, Epilepsy, Female, Fossati C, Furia F, Gastroesophageal Reflux, gene, gene mutation, Gervasini C, HDAC8 gene, histone deacetylase 8, Human, Intellectual Impairment, Kullman G, Male, Masciadri M, NIPBL gene, Priority Journal, problem behavior, RAD21 gene, Russo S, Selicorni A, sleep disorder, sleep disturbance/disorders, SMC1A gene, SMC3 gene, Taiana M, Trajectory, Turner K, Vignoli A, Zambrelli E

Tags: 2016, Adolescent, Article, assessment of humans, Bella G D, Bertini E, Castelli E, characteristics, Child, Clinical Article, Controlled Study, Female, Friedreich's ataxia, functional assessment, Gait, Gait Analysis and the Scale for the Assessment and Rating of Ataxia, Gazzellini S, Human, Lispi M L, longitudinal study, Male, Petrarca M, Pisano A, PLoS One, Preschool Child, Reliability, step length, stride length, tone and motor problems, Trajectory, Vasco G, Walking, walking velocity, Zazza M

Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult

Tags: 2017, achondroplasia, adenotonsillectomy, Amaddeo A, American Journal of Medical Genetics Part A, apnea hypopnea index, apnea monitoring, Baujat G, BiPAP, bone dysplasia, breathing difficulties, cervical decompression, Child, Clinical Article, Cormier-Daire V, Couloigner V, CPAP, De Sanctis L, ENT surgery, Fauroux B, Human, James S, Khirani S, Michot C, Neurosurgery, obstructive sleep apnea, physical interventions, Polysomnography, Preschool Child, Prevalence, Retrospective Study, School Child, Sleep disordered breathing, Surgery, surgical interventions, Tenconi R, upper respiratory tract, Zerah M

Tags: 2014, Aberrant Behavior Checklist, adaptive behavior, Adolescent, Adult, Age, American Journal of Medical Genetics Part A, Article, Autism, behavior disorder, Behavioral phenotype, behavioral problems, characteristics, Checklist, Child, Childhood Autism Rating Scale, Clark B, Clinical Article, Communication, communication disorder, compulsion, Cornelia de Lange syndrome, daily life activity, De Lange syndrome, Diagnosis, Disease Severity, Emotion, Female, Grados M A, Human, hyperactivity, Intellectual Impairment, Interpersonal Communication, Irritability, Kline A D, Landy-Schmitt C, Language, lethargy, limb, maladjustment, Male, Phenotype, Priority Journal, psychological rating scale, Rating Scale, Repetitive behaviors, rigidity, Skill, social cognition, Socialization, Specht M, Srivastava S, stereotypy, Trajectory, Verbal Communication, Vineland Adaptive Behaviors Scales

Tags: 2016, Adolescent, Aksoy S, Akyol U, Article, aspiration scale, auditory response, Balance disorders, body equilibrium, characteristics, Child, Clinical Article, Controlled Study, Demir N, Dysphagia, Endoscopy, feeding difficulties, Female, Flexible endoscopy, hearing, hearing impairment, Hearing problems, Human, International Journal of Pediatric Otorhinolaryngology, Kuscu O, Male, Niemann Pick disease/di [Diagnosis], Niemann-Pick Disease, NPC, Otorhinolaryngology, penetration, postural imbalance, Preschool Child, Priority Journal, Prospective Study, pure tone audiometry, School Child, Senirli R T, stabilography, Swallowing, Swallowing disorders, tone and motor problems, Topcu M, Trajectory, vestibular system, Yigit O

Tags: 2 hydroxypropyl beta cyclodextrin, 2018, 94035-02-6 (2 hydroxypropyl beta cyclodextrin), Adolescent, Adult, Alter K, Article, balance impairment, body equilibrium, case control study, characteristics, Child, Clinical Article, clinical evaluation, Comparative Study, coordination disorder, disease severity assessment, Farhat N, Female, gait disorder, Human, Human Development, intervention study, Journal of Child Neurology, Keener L A, Male, molecular stability, motion analysis system, Neurologic Examination, Niemann Pick disease, NIH NPC Neurologic Severity Scale, NPC, outcome assessment, performance, Porter F, Preschool Child, Priority Journal, Research, Retrospective Study, Sansare A, School Child, scoring system, spatiotemporal analysis, stabilography, Stanley C, tone and motor problems, Trajectory, Upper limb, vts 270, Young Adult, Zampieri C

Tags: 2013, acquired demyelinating syndromes, acute disseminated encephalomyelitis, Adolescent, alertness, Article, Benedict R H B, Canada, characteristics, Child, Child Behavior, Childhood Disease, Clinical Article, Cohort Analysis, Comorbidity, Controlled Study, Cross-sectional Study, demyelinating disease, demyelinating disorders, Depression, disease duration, Epidemiology, Fatigue, Female, Health Survey, Human, Journal of Child Neurology, Male, Mood, Multiple Sclerosis, Parrish J B, Priority Journal, psychological aspect, School Child, Self Report, Sleep, Smerbeck A, Therapy, Trajectory, Weinstock-Guttman B, Yeh E A

Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]

Tags: 2017, Adolescent, Adult, Article, auditory hallucination, CAG repeat, characteristics, Child, Clinical Article, Controlled Study, Epping E, Espe-Pfeifer P, Female, Health Survey, Hudgell D, Human, Huntington chorea, juvenile, Juvenile Huntington disease, leg pain, Male, Martin E, Mathews K, Moser A D, Nance M, Neurodegenerative Disease Management, Nopoulos P, Pain, Priority Journal, pruritus, psychosis, Quarrell O, skin irritation, sleep disorder, sleep disturbance/disorders, tic, Trajectory, visual hallucination, Zhorne L

Tags: 1134-47-0 (baclofen), 2017, acquired brain injury, Adolescent, Article, Baclofen/dt [drug Therapy], baclofen/tl [Intrathecal Drug Administration], Campbell D I, Case Study, central nervous system disease, Cerebral Palsy, Child, Clinical Article, Constipation, Dystonia, dystonia/dt [Drug Therapy], feed induced dystonia, feed induced dystonia/dt [Drug Therapy], feeding difficulties, Female, Gastroesophageal Reflux, Gastroscopy, GERD, Human, Hydrocephalus, Hyperglycinemia, Infant, infantile spasm, intestinal dysmotility, intestine motility, Intestine Obstruction, Journal Of Pediatric Gastroenterology And Nutrition, Male, microcephaly, Mordekar S R, motor dysfunction, MPSIII, onset age, Parenteral Nutrition, Percutaneous Endoscopic Gastrostomy, peristalsis, pharmacologic intervention, Practice Guideline, Preschool Child, Priority Journal, reflux esophagitis, Retrospective Study, Rett syndrome, Sanfilippo syndrome, School Child, tone and motor problems, total parenteral nutrition, Velayudhan M, West syndrome

Tags: 1309378-01-5 (botulinum toxin A), 1638949-86-6 (botulinum toxin A), 1800016-51-6 (botulinum toxin A), 2017, 93384-43-1 (botulinum toxin A), Adolescent, Adult, Aicardi-Goutières syndrome, anamnesis, Article, aspiration pneumonia, Assessment, Bernard G, botulinum toxin A/dt [Drug Therapy], breathing difficulties, characteristics, Child, Clinical Article, Cohort Analysis, Comorbidity, Daniel S J, Drool, drooling, Dysphagia, feeding difficulties, head and neck disease, hearing impairment, Human, hypersalivation/su [Surgery], International Journal of Pediatric Otorhinolaryngology, Kay-Rivest E, Khendek L, Krabbe disease, Leukodystrophy, leukodystrophy/dt [Drug Therapy], nose feeding, otolaryngologist, Pelizaeus-Merzbacher disease, physical examination, Physician Attitude, Priority Journal, Quality Of Life, quality of life assessment, Questionnaire, sleep disturbance, stomach tube, Trajectory, x-linked adreno-leukodystrophy