Browse Items (74 total)
- Tags: Surveys And Questionnaires
Health and sleep problems in Cornelia de Lange Syndrome: a case control study
Tags: 2008, Adolescent, Arron K, behavioral problems, Case-Control Studies, characteristics, Comorbidity, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Ear Diseases/epidemiology/psychology, Eye Diseases/epidemiology/psychology, Female, Gastrointestinal Diseases/epidemiology/psychology, Hall S, Health Status, Hernia/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/psychology, Journal Of Intellectual Disability Research, Male, Oliver C, Prevalence, Self-Injurious Behavior/epidemiology/psychology, self-injury, Severity Of Illness Index, Skin Diseases/epidemiology/psychology, sleep disturbance, Sleep Wake Disorders/epidemiology, Sloneem J, Stomatognathic Diseases/epidemiology/psychology, Surveys And Questionnaires, Trajectory
Sixty-four patients with Brachmann-de Lange syndrome: a survey
Tags: 1985, American Journal Of Medical Genetics, behavioral problems, Birth Weight, breathing difficulties, characteristics, Child, De Lange syndrome, De Lange Syndrome/etiology/genetics/physiopathology, feeding difficulties, Female, Hawley P P, Humans, Jackson L G, Kurnit D M, Male, Psychomotor Performance, respiratory tract symptoms, Surveys And Questionnaires, Trajectory
Sleep disorder and epilepsy in children with tuberous sclerosis: a questionnaire-based study
Tags: 1994, Adolescent, behavioral problems, characteristics, Child, Child Preschool, Developmental Disabilities/complications, Developmental Medicine and Child Neurology, Epilepsy/etiology, Female, Humans, Hunt A, Learning Disorders/complications, Male, Parents/psychology, sleep disturbance, Sleep Wake Disorders/etiology/psychology, Stores G, Stress Psychological/etiology, Surveys And Questionnaires, Trajectory, Tuberous Sclerosis, Tuberous Sclerosis/complications/psychology
Gastrointestinal and nutritional problems occur frequently throughout life in girls and women with Rett syndrome
Tags: 2012, Adolescent, Adult, Age Factors, Annese F, Barrish J O, Bone Diseases/complications/epidemiology, Caeg E, characteristics, Child, Child Preschool, Child Nutrition Disorders/epidemiology/etiology/genetics, Constipation, dysmotility, Dysphagia, feeding difficulties, Female, Gastrointestinal Diseases/epidemiology/etiology/genetics, gastrointestinal dysmotility, Geerts S, Glaze D G, Growth Disorders/epidemiology/etiology/genetics, Health Surveys, Humans, Infant, Infant Nutrition Disorders/epidemiology/etiology/genetics, Journal Of Pediatric Gastroenterology And Nutrition, Lane J B, Lee H S, Male, McNair L, Methyl-CpG-Binding Protein 2/genetics, Motil K J, Mutation, Neul J L, Nutrition Disorders/epidemiology/etiology/genetics, Parents, Percy A K, Prevalence, Rett syndrome, Rett Syndrome/complications/genetics, Skinner S A, Surveys And Questionnaires, Trajectory, Young Adult
Sleep disturbances in aspartylglucosaminuria (AGU): a questionnaire study.
Tags: 2006, Acetylglucosamine, Acetylglucosamine/analogs & derivatives/urine, Adolescent, Adult, Aspartylglucosaminuria, characteristics, Child, Child Preschool, Children W/SNI, Female, Heiskala H, Humans, Journal Of Inherited Metabolic Disease, Kaski M, Kivinen S, Laakso M L, Lindblom N, Longitudinal Studies, Male, Metabolism Inborn Errors, Metabolism Inborn Errors/complications/pathology, Middle Aged, Prevalence, Questionnaires, Sleep Disorders/complications/diagnosis, sleep disturbance/disorders, Sleep Wake Disorders, Surveys And Questionnaires, Trajectory
Sleep in individuals with Cri du Chat syndrome: a comparative study
Tags: 2009, Adolescent, Adult, Braam W, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/ep [Epidemiology], Cri-du-Chat Syndrome/ge [Genetics], Curfs L M, Didden R, Female, Genetic Testing, Humans, Infant, Infant Newborn, Journal Of Intellectual Disability Research, Korzilius H, Maas A P, Male, Middle Aged, Prevalence, Severity Of Illness Index, sleep disturbance/disorders, Sleep Wake Disorders/di [Diagnosis], Sleep Wake Disorders/ep [Epidemiology], Smits M G, Statistics Nonparametric, Surveys And Questionnaires, Trajectory, Young Adult
The prevalence and phenomenology of repetitive behavior in genetic syndromes
Tags: 2009, Adolescent, Adult, Angelman Syndrome/epidemiology/psychology, Arron K, behavioral problems, Berg K, Burbidge C, characteristics, Child, Child Preschool, Cri-du-chat, Cri-du-Chat Syndrome/epidemiology/psychology, De Lange syndrome, De Lange Syndrome/epidemiology/psychology, Female, Fragile X Syndrome/epidemiology/psychology, Humans, Intellectual Disability/epidemiology/genetics/psychology, Journal of Autism and Developmental Disorders, London, Male, Middle Aged, Moss J, Oliver C, Phenotype, Prader-Willi Syndrome/epidemiology/psychology, Prevalence, repetitive behavior, Stereotyped Behavior, Surveys And Questionnaires, Syndrome, tone and motor problems, Trajectory, Young Adult
Behavioural phenotype of Cornelia de Lange syndrome: case-control study
Tags: 2008, Adolescent, Adult, Arron K, Autistic Disorder/psychology, behavioral problems, Case-Control Studies, characteristics, Child, Child Preschool, Communication Disorders/psychology, Compulsive Behavior/psychology, De Lange syndrome, De Lange Syndrome/psychology, Female, global behavior disorder, Hall S, Humans, Male, Oliver C, Phenotype, Sloneem J, Surveys And Questionnaires, The British Journal of Psychiatry, Trajectory, Young Adult
Modes and patterns of self-mutilation in persons with Lesch-Nyhan disease
Tags: 2003, Adolescent, Adult, Anticonvulsants/therapeutic use, Barabas G, behavioral problems, Carbamazepine/therapeutic use, characteristics, Child, Child Preschool, Chromosomes Human X/genetics, Developmental Medicine and Child Neurology, Diazepam/therapeutic use, Eddey G E, Female, Giacomini K D, Humans, Infant, Lesch-Nyhan syndrome, Lesch-Nyhan Syndrome/genetics, Male, Reck J F, Robey K L, Self-Injurious Behavior/diagnosis/drug therapy, self-injury, Surveys And Questionnaires, Trajectory
Age-dependent change in behavioral feature in Rubinstein-Taybi syndrome
Tags: 2012, Adolescent, Adult, Age, Aggression, aggressive behavior, anxiety, Behavior, behavioral problems, characteristics, Child, Congenital Anomalies, Depression, Factors, Female, Humans, Infant, Kosaki K, Kosaki R, Kurosawa K, Male, Mizuno S, Okamoto N, Preschool, Rubinstein-Taybi Syndrome, Rubinstein-Taybi Syndrome/di [Diagnosis], Sato Y, Surveys And Questionnaires, Takahashi T, Trajectory, Yagihashi T, Young Adult
Sleep disordered breathing in a cohort of children with achondroplasia: correlation between clinical and instrumental findings
Tags: 2017, achondroplasia, Achondroplasia/co [Complications], Achondroplasia/ge [Genetics], Age Factors, Antoniazzi F, Cantalupo G, characteristics, Child, Child Preschool, Cohort Studies, EC 2-7-10-1 (FGFR3 protein human), EC 2-7-10-1 (Receptor Fibroblast Growth Factor Type 3), feeding difficulties, Female, Gasperi E, Humans, Incidence, Infant, Lo Tartaro P, Male, Minerva Pediatrica, Piacentini G, Polysomnography/mt [Methods], Receptor Fibroblast Growth Factor Type 3/ge [Genetics], respiratory sleep disorder, Sleep Apnea Syndromes/di [Diagnosis], Sleep Apnea Syndromes/ep [Epidemiology], Sleep Apnea Syndromes/et [Etiology], Surveys And Questionnaires, Trajectory, Zaffanello M
Development of student competencies for palliative care
Tags: 2019, Adolescent, Adult, Baccalaureate, Carreno S P, Carrillo G M, Clinical Competence, Colombia, Diaz L C, Education, February 2020 List, Female, Gomez O J, Hospice and Palliative Care Nursing/ed [Education], Humans, International Journal of Palliative Nursing, Interviews As Topic, Male, Nursing, Students, Surveys And Questionnaires, Young Adult
Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care
Tags: 2018, Adult, Age Factors, April 2020 List, Chang Y C, Clinical Competence, confidence and comfort, Cross-sectional Studies, Educational Status, Female, Humans, Journal of Palliative Medicine, Lee H Y, Liang H F, Liu H F, Male, Marital Status, Neonatal Palliative Care, neonatal professional, Neonatology, Palliative Care, Peng N H, Self Concept, Social Support, Surveys And Questionnaires, Taiwan, Wang T M
Differing needs of mothers and fathers during their child's end-of-life care: secondary analysis of the "Paediatric end-of-life care needs" (PELICAN) study
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Factors During a Child's Illness Are Associated With Levels of Prolonged Grief Symptoms in Bereaved Mothers and Fathers
Tags: 2020, Adolescent, Adult, Attitude To Death, Child, Fathers/psychology, Female, Grief, Humans, Journal Of Clinical Oncology, Kreicbergs U, Male, Middle Aged, Mothers/psychology, Neoplasms/*psychology, Oncology 2020 List, Parent-child Relations, Parents/*psychology, Pohlkamp L, Sex Factors, Surveys And Questionnaires, Sveen J
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Tags: 2020, Canada, Child, Cross-sectional Studies, Dryden-Palmer K, Humans, Infant Newborn, Intensive Care Units Neonatal, Janvier A, Larson CP, March 2021 List, McNeil C, Moore G, Morals, Parshuram CS, Pediatric Critical Care Medicine, Roumeliotis N, Stress Psychological/diagnosis/epidemiology, Surveys And Questionnaires, Tomlinson G
Key constituents for integration of care for children assisted with long-term home ventilation: a European study
Tags: 2020, Access to care, Berry J, Bmc Pediatrics, Brenner M, Care coordination, Caregivers, Child, Child Health, Child Health Services, Complex care needs, Europe, Family partnership, Governance, home care services, Humans, Larkin P, Long-term home ventilation, May 2021 List, O'Shea MP, Palliative Care, Quality Of Care, Respiration Artificial, Respite Care, Surveys And Questionnaires
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Tags: 2021, Child, Child Preschool, Cross Infection/prevention & control, Cross-sectional Studies, Drug Resistance Multiple, Female, Hartenstein-Pinter A, Hasan C, Hospital Units, Humans, hygiene, Infant, Infection Control/organization & administration, Inservice Training, International Journal of Palliative Nursing, Interviews As Topic, Male, May 2021 List, Nursing Assessment, Paediatrics, Palliative Care, Parents, Patient Isolation, Patient Safety, Quality Of Life, Schmidt P, Social Participation, Stening K, Stereotyping, Surveys And Questionnaires, Terminally Ill, Wager J, Zernikow B
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Tags: 2020, Acta Paediatrica, Attitude Of Health Personnel, Attitude questionnaire, Attitudes of neonatologists and neonatal nurses, Baes S, Beernaert K, Belgium, Chambaere K, Cohen J, Cools F, Death, Decision Making, Deliens L, Dombrecht L, End-of-life Decisions, Goossens L, July 2021 List, Naulaers G, Neonatal Nurses, Neonatologists, Newborn Infant, Optimism, Perinatal Death, Piette V, Pregnancy, Roets E, Surveys And Questionnaires, Terminal Care, Termination of pregnancy
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
Why is corneal donation so rare in children's hospices? A survey of multidisciplinary team members attitudes, knowledge, practice, and experience
Tags: 2022, Attitude, Attitude Of Health Personnel, August 2022 List, Cecchi C, Child, Children's Hospice, Cornea, corneal donation, Giometto S, Giugni C, Health Knowledge, Attitudes, Practice, Hospices, Humans, Lucenteforte E, Patient Care Team, Pediatr Transplant, Ricci Z, Santucci C, Surveys And Questionnaires
A Scale for the Identification of the Complex Chronic Pediatric Patient (PedCom Scale): A Pilot Study
An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
Tags: Child, Quality of Life, 2022, Afriyie A, Barth M, Burden of illness, Caregiver Burden, Caregiver experience, Caregivers, Dillon A, Early-onset, Family, Howie K, Humans, juvenile, Late infantile, Leukodystrophy Metachromatic/Genetics, Metachromatic Leukodystrophy, Mld, November 2022 List, Orphanet Journal Of Rare Diseases, Pang F, Quality Of Life/psychology, Sevin C, Surveys And Questionnaires, Walz M, Wilds A
Research barriers in children and young people with life-limiting conditions: a survey
Tags: Child, Humans, 2022, Adolescent, Beecham E, Bluebond-Langner M, BMJ Support Palliat Care, clinical decisions, Ethics, Hudson BF, January List 2023, Jones L, Lakhanpaul M, methodological research, Oostendorp LJM, Paediatrics, Palliative Care/methods, Peake JN, Research Design, Stone P, Surveys And Questionnaires, Symptom Management, Symptoms
Family experience in a regional participant contact registry for research on intellectual disability
Tags: 2014, 2023 SE1 - Parent Perspectives, Adolescent, Adult Child, Child, Conners FA, Family, Female, Hamilton JC, Humans, Infant, Intellectual and Developmental Disabilities, Intellectual Disability, Male, Middle Aged, Patient Selection, Phillips BA, Preschool, Registries, Research, Rhodes JD, Surveys And Questionnaires, Young Adult
Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool
Tags: 2022, 2022 Special Edition 3 - Oncology List, Adolescent, Adult, Advanced Cancer, Avoine-Blondin J, BMC Palliative Care, Child, Concept Formation, Dumont É, Duval M, Female, Humans, Male, Marquis MA, Mixed-method, Neoplasms, Palliative Care, Pediatrics, psychology/therapy, Quality Of Life, Reproducibility of Results, Sultan S, Surveys And Questionnaires
Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study
Tags: 2022, Adult, Attitude Of Health Personnel, Cesarean Section, Child, Cross-sectional Studies, Damps M, Gajda M, Human, International Journal of Environmental Research and Public Health, Kowalska M, Kucewicz-Czech E, March List 2023, Medical Futility, Nursing Staff, Poland, Quality Of Life, Surveys And Questionnaires
Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients
Face and Content Validity, Acceptability, Feasibility, and Implementability of a Novel Outcome Measure for Children with Life-Limiting or Life-Threatening Illness in Three Sub-Saharan African Countries
Tags: 2022, 2022 Special Edition Low Resource Setting Issue, Abas M, Adolescent, Ali Z, Atieno M, Bristowe K, Child, Downing J, Feasibility Studies, Harding R, Higginson IJ, Hospice And Palliative Care Nursing, Humans, Luyirika EB, Meiring M, Murtagh FE, Mwangi-Powell FN, Namisango E, Outcome Assessment Health Care, Palliative Care, Palliative Care/px [psychology], Palliative Medicine, Powell RA, Surveys And Questionnaires, uganda
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Tags: 2021, 2021 Special Edition - Oncology, Adolescent, Advance Care Planning, Beernaert K, Bmc Pediatrics, Child, Cohen J, Communication, De Vleminck A, Deliens L, Gilissen J, Humans, Kars MC, Multi-Centre randomised controlled trial, Multicenter Studies as Topic, Neoplasms/therapy, Paediatric oncology, paediatric palliative care, Parent-adolescent communication, Parents, Randomized Controlled Trials as Topic, Surveys And Questionnaires, Terminal Care, van der Werff TBJ, van Driessche A
Longitudinal Understanding of Prognosis among Adolescents with Cancer
Tags: 2021, 2021 Special Edition - Oncology, Adolescent, Child, Communication, Compas BE, Desjardins L, Female, Fisher RS, Follow-up Studies, Fults MZ, Gerhardt CA, Humans, Kenney AE, Longitudinal Studies, Male, Manring S, Neoplasms/pathology/psychology/therapy, Oncologists/psychology, Oncology, Palliative Care, Parents/psychology, Pediatric Blood & Cancer, Prognosis, Psycho-Oncology, psychosocial, Ranalli MA, Rausch JR, Rodriguez EM, Surveys And Questionnaires, Vannatta K, Young-Saleme T