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1.
Vet Sci ; 9(10)2022 Oct 13.
Artigo em Inglês | MEDLINE | ID: mdl-36288176

RESUMO

This qualitative study (n = 25) was created to better understand the mental health of U.S. swine veterinarians who were involved in the mass depopulation events related to COVID-19. A total of 25 swine veterinarians, participants in a previous larger quantitative study, volunteered to be interviewed about their experiences related to the COVID-19 mass depopulation event. Themes that emerged from these interviews included: (1) the need to be better prepared for crisis events; (2) lack of public understanding; (3) moral distress; (4) empathy for others, especially young veterinarians; (5) sources of support; (6) pride, honor and gratitude; and (7) an overarching theme of emotional distancing and detachment-concerns external to one's own mental health. Based on our results, we recommend additional training and supportive services for those who might be involved in future depopulation efforts. Additionally, we suggest that the veterinary profession prioritize public education campaigns to help the public better understand the need for depopulation.

2.
Artigo em Inglês | MEDLINE | ID: mdl-36011770

RESUMO

Dog aggression directed towards people is a leading reason for relinquishment and a major public health hazard. In response to the threat of dog aggression and dog bites, breed-specific legislation has been introduced in numerous cities within the United States and countries throughout the world. There is limited evidence, however, to suggest that such laws are effective. This study explored, through an online, anonymous, cross-sectional survey, US residents' views about the bite risk of common dog breeds, breed-specific legislation, and alternative options for improved public safety. A total of 586 surveys were completed by adult US residents, 48.8% female and 48.6% male. Approximately half of the respondents reported feeling that dog bites are a serious public health issue. Although 70% of respondents were opposed to a breed ban, only 56% felt that banning specific breeds creates an animal welfare issue. Females were less likely to support a ban or agree that specific breed bans improve public safety. When participants were asked to indicate their support of several alternatives to breed-specific legislation, the most frequently endorsed options included public education about animal welfare and animal behavior, and stricter leash laws. Further research pertaining to the most effective public education dissemination methods is warranted.


Assuntos
Mordeduras e Picadas , Agressão , Bem-Estar do Animal , Animais , Cruzamento , Estudos Transversais , Cães , Feminino , Humanos , Masculino , Estados Unidos
3.
Animals (Basel) ; 12(13)2022 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-35804588

RESUMO

Guilt refers to an unpleasant emotional state associated with one's behaviors, thoughts, or intentions, and it is based on the possibility that one may be in the wrong or that others may have this perception. Parental guilt is one common subtype and is often associated with work-family conflict (WFC). WFC and related guilt have been found to be associated with depression and anxiety. Through an online anonymous survey, the current study was designed to explore dog owners' guilt surrounding their dogs. Results suggest that dog owners' guilt and WFC associated with their dog are at levels similar to those reported in human family studies. Additionally, the relationship between dog owners' guilt and discrepancy between participants' actual and ideal self, in regard to the role of a dog owner, also mirrored human-only family research. Because pet-related guilt is unrecognized, acknowledged, or supported, we suggest it is disenfranchised. As people return to work, in this period of post-COVID-19 pandemic time, it is paramount that companies and communities acknowledge pet owner guilt and WFC and help owners find practical, effective solutions.

4.
Animals (Basel) ; 11(7)2021 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-34359212

RESUMO

The initial months of COVID-19 forced people to quickly adapt to dramatic changes to their daily lives. As a result of the inevitable decrease in access to social support available during the lockdown phase of COVID-19, countless individuals relied upon their companion dogs and cats. Given the strong connections people often have with their companion animals, this study hypothesized that companion dogs and cats would positively impact guardians' mental health. Anonymous, cross-sectional online surveys were used to test this premise. A total of 5061 responses, primarily females (89%) from the United States (84%), were analyzed. Results suggest that companion animals played a critical role in helping reduce feelings of depression, anxiety, isolation, and loneliness for a majority of pet guardians. Companion animals also helped increase guardians' experiences of self-compassion, ability to maintain a regular schedule, feel a sense of purpose and meaning, and cope with uncertainty. This was most pronounced for women under the age of 40 who were highly bonded to their companion animal. In conclusion, our study suggests that a companion dog or cat can buffer the effects of extreme stress and social isolation as witnessed during the COVID-19 pandemic.

5.
Animals (Basel) ; 11(3)2021 Feb 25.
Artigo em Inglês | MEDLINE | ID: mdl-33668841

RESUMO

The onset of COVID has impacted the field of veterinary medicine and the lives of cat guardians in numerous ways, yet the subject remains largely unexplored. The purpose of this study was to better understand cat guardians' fears and concerns pertaining to veterinary care and obtainment of pet care products and food during the initial lock down phase of the COVID pandemic to better address these concerns now and in the future. To this end, an anonymous online survey was distributed to cat guardians during the first two months of the pandemic. The survey included questions pertaining to guardians' relationship with their cat and their veterinary related concerns and experiences as a result of the pandemic. Quantitative and qualitative data were collected from 956 participants. The results revealed that the increased amount of time guardians spent with their cat had a positive impact on their bond. Participants' veterinary related concerns, particularly for participants between 18-29 years of age, centered around availability of their veterinarian for both emergency and non-emergency care. Other concerns included fears about the ability to afford emergency veterinary care and obtain cat food and supplies. Awareness of these concerns can help veterinarians better support cat guardians by directly communicating their continued availability and presence in the face of a pandemic as well as other challenging times.

6.
Animals (Basel) ; 11(2)2021 Jan 28.
Artigo em Inglês | MEDLINE | ID: mdl-33525673

RESUMO

The Covid-19 pandemic has been found to negatively impact the psychological well-being of significant numbers of people globally. Many individuals have been challenged by social distancing mandates and the resultant social isolation. Humans, in our modern world, have rarely been as isolated and socially restricted. Social connectedness and support are critical protective factors for human survival and well-being. Social isolation can lead to loneliness, boredom, and can become a risk factor for physical and mental health issues such as anxiety and depression. The attachments formed with dogs, however, can be as strong or even stronger than human connections, and has been shown to relate to fewer physical health and mental health problems, as well as decrease isolation and loneliness. The purpose of this qualitative research was to examine the thoughts, experiences and concerns of 4105 adults regarding their companion dog during the initial months of Covid-19. Data were collected between March 31st-April 19th, 2020 via online survey and themes were coded by the researchers using directed content analysis. Results highlighted a strong human-animal appreciation, and that dog ownership during this pandemic diminished participants' sense of isolation and loneliness, as well as supported their mental/physical health.

7.
Front Vet Sci ; 8: 629121, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33604366

RESUMO

Veterinarians, like many other professions, were significantly impacted by the onset of COVID-19 in the spring of 2020. Standard practices were disrupted, and veterinary hospitals had to quickly modify standard protocols to safely serve their clients and patients. The purpose of this study was to better understand dog owners' fears and concerns pertaining to veterinary care and obtainment of pet care products and food during the lock down phase of a pandemic to be better prepared to address these concerns now and in the future. To this end, an online, anonymous, cross-sectional survey was designed and distributed to adult dog owners via social media. The results, from a total of 4,105 participants (the majority from the United States and Canada), indicated substantial areas of concern. The number one concern of dog owners during this time was the availability of emergency veterinary care. Owners under 30 years of age, compared to older owners, were significantly more concerned about both availability and cost of veterinary care (emergency and non-emergency). The ability to care for one's dog if they were to become ill was a concern for many owners, yet only 60% had identified a caretaker for their dog if one was needed. These results suggest that the majority of dog owners remained true steadfast guardians of their dogs, continuing to make them a priority, even during pandemic times. Suggestions to help mitigate dog owners' concerns and improve communication between owners and veterinarian teams are offered.

8.
J Inherit Metab Dis ; 44(1): 215-225, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32785952

RESUMO

Acute intoxication-type inborn errors of metabolism (IT-IEM) such as urea cycle disorders and non-acute IT-IEM such as phenylketonuria have a major impact on paediatric patients' life. Patients have to adhere to a strict diet but may face neurocognitive impairment and - in acute diseases - metabolic decompensations nevertheless. Research on the subjective burden of IT-IEM remains sparse. Studies with appropriate sample sizes are needed to make valid statements about health-related quality of life (HrQoL) in children and adolescents with IT-IEM. Six international metabolic centres contributed self-reports and proxy reports of HrQoL (assessed with the Paediatric Quality of Life Inventory) to the final data set (n = 251 patients; age range 2.3-18.8 years). To compare HrQoL of the patient sample with norm data and between acute and non-acute IT-IEM, t tests were conducted. To examine the influence of child age, sex, diagnosis and current dietary treatment on HrQoL, multiple linear regression analyses were conducted. Self-reports and proxy reporst showed significantly lower HrQoL total scores for children with IT-IEM compared to healthy children. Current dietary treatment significantly predicted lower proxy reported total HrQoL. Children with non-acute IT-IEM reported significantly lower psychosocial health and emotional functioning than children with acute IT-IEM. The patient sample showed significantly impaired HrQoL and a diet regimen remains a risk factor for lower HrQoL. Differences in HrQoL between acute and non-acute IT-IEM subgroups indicate that factors beyond symptom severity determine the perception of disease burden. Identifying these factors is of crucial importance to develop and implement appropriate interventions for those in need.


Assuntos
Adaptação Psicológica , Erros Inatos do Metabolismo/psicologia , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Cooperação Internacional , Modelos Lineares , Masculino , Erros Inatos do Metabolismo/dietoterapia , Fatores de Risco
9.
Omega (Westport) ; 82(3): 389-408, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30514184

RESUMO

This study investigated self-compassion in the context of grief following the death of a companion animal in a recently bereaved sample (N = 431). We addressed social contexts and individual differences focusing on how psychosocial outcomes vary as a function of social constraints, as well as individual differences in self-compassion and use of continuing bonds (CB). We observed that self-compassion related to the frequency of engagement in CB. Self-compassion also moderated relationships between grief severity and depression as well as social constraints and depression. We recommend future research on self-compassion training and psychosocial outcomes, especially for those experiencing social constraints or disenfranchised grief.


Assuntos
Luto , Empatia , Animais , Pesar , Humanos
10.
Am J Med Genet A ; 182(5): 1130-1142, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32125090

RESUMO

This study examined the health-related quality of life (HRQoL) and psychological functioning of children and young adults with Gaucher disease, type 1 (GD1). Thirty-two (17 pediatric, 15 young adult) patients with GD1 and one parent completed age-appropriate assessments of HRQoL, emotional, and behavioral health. The HRQoL of children with GD1 was compared with a healthy sample and to children diagnosed with Fabry disease (FD; another lysosomal storage disease), while young adults were compared to a healthy sample and to patients with self-reported chronic illnesses. Children with GD1 reported significantly lower HRQoL across all domains relative to healthy counterparts yet comparable HRQoL compared to children with FD. Young adults reported mildly lower physical functioning than healthy peers, but no differences in HRQoL relative to the chronic illness sample. Parent-reported symptom severity was associated with poorer HRQOL in children but not young adults. Few group differences in psychological functioning were observed, except young children showed more school problems than the normative average and there was a trend toward internalizing symptoms. Overall, results consistently identified younger patients with GD1 as more affected than older patients in HRQoL and psychological domains. Implementation of psychosocial interventions may be particularly beneficial during early childhood.


Assuntos
Doença Crônica/epidemiologia , Doença de Fabry/epidemiologia , Doença de Gaucher/epidemiologia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Doença de Fabry/genética , Doença de Fabry/fisiopatologia , Feminino , Doença de Gaucher/genética , Doença de Gaucher/fisiopatologia , Nível de Saúde , Humanos , Masculino , Pais , Pediatria , Autorrelato , Inquéritos e Questionários , Adulto Jovem
11.
Death Stud ; 44(5): 278-284, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-30570446

RESUMO

There is little research available regarding the impact of pet loss on children. In the current mixed-methods study, we explored the different ways that children use continuing bonds (CB) to cope following the death of a pet. We studied 32 children (5-18 years) and their parents. Children answered four questionnaires and the Continuing Bonds Interview. Parents answered a demographic questionnaire. Results suggest that all children utilize CB while grieving the loss of a pet, although CB expression varies depending on the age of the child, the level of grief following the loss, and the strength of attachment to the pet.


Assuntos
Adaptação Psicológica/fisiologia , Comportamento do Adolescente/psicologia , Comportamento Infantil/psicologia , Pesar , Vínculo Humano-Animal , Apego ao Objeto , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino
12.
Palliat Support Care ; 16(3): 367-370, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29380715

RESUMO

ABSTRACTObjective:Pediatric bone marrow transplants represent a medically stressful, potentially traumatic experience for children and caregivers, and psychological support for parental caregivers is paramount to their long-term well-being. However, many medical centers do not have protocols in place to sustain caregiver well-being during these distressing experiences. METHOD: We report on a case of a 10-month-old infant with Wiskott Aldrich Syndrome who was hospitalized for bone marrow transplantation. RESULT: We describe the significant burden that fell upon caregivers during and after a bone marrow transplantation. SIGNIFICANCE OF RESULTS: This case helped guide our suggestions to improve care for caregivers. Several logistical hurdles could be overcome to alleviate some of these burdens. We suggest that a child psychologist or psychiatrist should be on patient care teams and be attentive to parental stress, impairments, or impediments to self-care, and signs of emergency of mental illness in this setting of medical trauma. Additionally, promotion of sleep hygiene and linkage to support systems can maximize resiliency. Finally, we believe that hospital administrators should partner with clinicians to facilitate routine support during highly stressful transitions of care.


Assuntos
Cuidadores/psicologia , Síndrome de Wiskott-Aldrich/complicações , Transplante de Medula Óssea/métodos , Efeitos Psicossociais da Doença , Família/psicologia , Humanos , Lactente , Masculino , Pediatria/métodos , Sistemas de Apoio Psicossocial , Inquéritos e Questionários , Síndrome de Wiskott-Aldrich/psicologia
13.
Psychiatr Psychol Law ; 25(5): 706-723, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-31984047

RESUMO

Previous research has shown that antisocial, borderline, narcissistic and histrionic personality disorders, also known as the Cluster B personality disorders in the Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (DSM-5), are commonly raised in lawsuits. Cluster B disorders are characterized by problems with emotion regulation, impulsivity and interpersonal conflicts. Without question, individuals diagnosed with a Cluster B disorder possess traits that make them more susceptible to becoming involved in litigation; however, to date there has been no research on how the disorders interact with the judicial system. This study surveyed litigant success of Cluster B personality disorders in United States federal and state case law. Results showed that both criminal and civil litigants tended to be unsuccessful in their cases. Overall, this study demonstrated that court opinions can provide a window into the psychology of trial litigants and how personality can affect trial outcomes.

14.
Omega (Westport) ; 75(4): 337-359, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-28792362

RESUMO

The current study examined posttraumatic growth (PTG) experienced by bereaved pet owners following the death of their pet. Using qualitative methodology, we analyzed responses of 308 participants who answered yes to a question about experiencing PTG. Within the five factors model of PTG, the most endorsed included the following: Relating to Others ( n = 76), Appreciation of Life ( n = 52), Personal Strength ( n = 51), Spiritual Change ( n = 32), and New Possibilities ( n = 29). Other themes not captured by the PTG included as follows: relating to animals ( n = 70), continuing bonds ( n = 53), attachment relationship ( n = 44), and unconditional love ( n = 13). Our findings support the notion that PTG occurs for people who have experienced pet loss, with new emergent themes.


Assuntos
Adaptação Psicológica , Luto , Vínculo Humano-Animal , Animais de Estimação , Transtornos de Estresse Pós-Traumáticos/psicologia , Adolescente , Adulto , Idoso , Animais , Gatos , Cães , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
15.
Omega (Westport) ; : 30222817690403, 2017 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-28186462

RESUMO

The current study examined Posttraumatic Growth (PTG) experienced by bereaved pet owners in the United States, French-Canada, Japan, and Hong Kong following the death of their pet. Using qualitative methodology, we analyzed responses of participants who answered "yes" to a question about experiencing PTG and explored to what extent the cross-cultural responses mapped onto the five factors of the Posttraumatic Growth Inventory (PTGI). For the U.S. sample, 58% of responses mapped onto the PTGI. For French-Canada, 72% of responses mapped onto the PTGI. For Japan, 50% of responses mapped onto the PTGI and for Hong Kong, 39% of responses mapped onto the PTGI. We also explored emergent categories related to PTG for individuals who have lost a pet and discerned the unique aspects for PTG across cultures.

16.
Chronic Illn ; 13(4): 262-274, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-28133992

RESUMO

Background Juvenile dermatomyositis (JDM), a rare autoimmune disease, accounts for more than 80% of idiopathic inflammatory myopathy childhood cases, making it the most common idiopathic inflammatory myopathy among children. The average age of onset is approximately 7 years and commonly leads a chronic course. Symptoms of JDM include cutaneous features (Gottron's rash, heliotrope rash, or nail fold capillary changes), musculoskeletal features, calcinosis and lipodystrophy (a symmetrical deficit of subcutaneous fatty tissue), and acanthosis (thickening of the skin). Despite improvement in treatment regimens and the lowering of mortality rates, some children still lose their lives to JDM. This study assessed the effects of caring for a child diagnosed with JDM on the family system. Methods Participants included 36 mothers and 3 fathers of a child diagnosed with JDM. Parents were administered self-report measures, which assessed the overall family functioning (PedsQL-Family Impact Module), and the parents' mood and level of distress (profile of mood states). Additionally, parents were administered a semi-structured interview that included background information, psychosocial information, and sources of support. Results and conclusion Families of children with JDM reported difficulties in family functioning, communication problems, and an increased number of conflicts. Parents appeared to be experiencing higher than average levels of worry, worse physical functioning, and family relationships when compared to normative populations. Parents would benefit from psychosocial support due to the many challenges associated with caring for a child with JDM.


Assuntos
Cuidadores/psicologia , Dermatomiosite/terapia , Pais/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Miosite/terapia , Pesquisa Qualitativa , Qualidade de Vida , Autorrelato , Índice de Gravidade de Doença , Estresse Psicológico/etiologia
17.
J Pediatr Genet ; 5(3): 141-9, 2016 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-27617155

RESUMO

Fabry disease (FD) is a multisystemic disease that has previously been reported to result in poorer quality of life and psychosocial functioning in impacted adults. However, prior to the current study, limited data were available on the impact of FD in children and adolescents. Therefore, the present study examined the differences of quality of life, psychosocial functioning, and depression in children with FD as compared with a healthy sample. Results indicated that children with FD were experiencing poorer quality of life than their healthy counterparts. Notably, results consistently identified adolescents with FD as more heavily impacted than younger children, although not to the same degree as adults with FD as reported in previous studies. Therefore, adolescence may be a critical point in the development of individuals with FD during which effective multidisciplinary interventions could be utilized to prevent poor quality of life and psychosocial functioning in adulthood.

18.
J Pediatr ; 178: 164-170.e1, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27522440

RESUMO

OBJECTIVES: To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. STUDY DESIGN: A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. RESULTS: Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. CONCLUSIONS: Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors.


Assuntos
Transplante de Células-Tronco Hematopoéticas/psicologia , Doadores de Tecidos/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pais/psicologia , Procurador , Qualidade de Vida/psicologia , Irmãos , Inquéritos e Questionários , Estados Unidos
19.
Am J Med Genet B Neuropsychiatr Genet ; 168B(3): 204-10, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25739920

RESUMO

Fabry disease (FD) is an X-linked lysosomal storage disorder that results in progressive multisystemic organ complications. Several studies have examined neurocognitive impairments in adults; however, there is a paucity of research examining neurocognitive functioning in children with FD. This is the first exploratory study to examine the neurocognitive functioning of pediatric patients with FD and to evaluate the effects of enzyme replacement therapy (ERT) on neurocognitive functioning within this population. Families attending a national conference with at least one child with FD and one parent affected by FD comprised the sample (n = 48; 24 pediatric patients, 24 parents). Pediatric participants (10 males, 14 females) between the ages of 6 and 18 years and their parent(s) were involved in the study. Data from a demographic questionnaire and two neurocognitive self-report and parent-report measures were analyzed. Parent reports of neurocognitive functioning were also compared to a sample of children with and without head injury and to a sample of children who had undergone liver transplant (LT). Children with FD had poorer cognitive and executive functioning than healthy peers, and were comparable to children with head injury and LT. In addition, children using ERT had higher scores on measures of overall cognitive functioning, as well as fewer problems with attention/working memory and executive functioning. Results of this study suggest that children with FD may exhibit poorer cognitive and executive functioning relative to healthy peers. The use of ERT may mitigate the negative impact of FD on neurocognitive functioning in pediatric patients.


Assuntos
Transtornos Cognitivos/etiologia , Transtornos Cognitivos/psicologia , Função Executiva/fisiologia , Doença de Fabry/complicações , Doença de Fabry/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Masculino , Testes Neuropsicológicos , Prognóstico , Adulto Jovem
20.
J Genet Couns ; 24(4): 635-44, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-25395377

RESUMO

Mucopolysaccharidosis type II (MPS II), also known as Hunter syndrome, is a chronic and progressive X-linked lysosomal disease that mainly affects males. The National MPS Society (2013) reports that MPS II affects 1 in 100,000 to 1 in 150,000 males worldwide. Two distinct forms of the disease are based on age of onset and clinical course: attenuated and severe. MPS II affects many organ systems including the nervous, cardiovascular, gastrointestinal and respiratory systems. Clinical manifestations can include progressive hearing loss, mental impairment, and enlarged liver and spleen. This study focuses on the health-related quality of life of individuals (HRQOL) with MPS II as measured by the parent and self-report versions of the Pediatric Quality of Life Inventory (PedsQL™). Both parents of patients with MPS II as well as patients themselves reported lower scores on all domains of the PedsQL™ (physical, emotional, social and school functioning) indicating that children with MPS II have an overall lower HRQOL when compared to a healthy sample. When compared with patients with other chronic illnesses (cancer, MSUD, galactosemia,), the MPS II sample had significantly lower scores on a number of PedsQL™ scales, suggesting an overall lower HRQOL. No significant relationships were found using scores from parent or self report PedsQL™ measures and length of time on ERT.


Assuntos
Mucopolissacaridose II/genética , Mucopolissacaridose II/psicologia , Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pais/psicologia , Autorrelato , Inquéritos e Questionários , Adulto Jovem
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