Your browser doesn't support javascript.
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 95
Filtrar
1.
Disabil Health J ; : 100889, 2020 Feb 03.
Artigo em Inglês | MEDLINE | ID: mdl-32046927

RESUMO

BACKGROUND: Few population-based studies have examined the association between disability and personal wellbeing (PWB) among working-age adults. OBJECTIVE/HYPOTHESIS: To determine: (1) the magnitude of differences in wellbeing between working-age adults with and without disability in contemporary samples representative of the UK population; and (2) whether the size of any observed differences between people with and without disability is moderated by age, gender, ethnicity, partnership status, educational attainment or employment status. METHODS: Secondary analysis of data from three national cross-sectional surveys. RESULTS: In each survey, people with disability scored lower than people without disability on all four indicators of PWB. Adjusting for the main effects of potentially moderating variables reduced the effect size of disability on PWB by an average of 24%. Subsequently adjusting for the two-way interaction terms between disability and potentially moderating variables reduced the effect size of disability (main effect) on PWB by an additional average of 73%. PWB among people with disability was significantly lower for: (1) men; (2) younger people; (3) those who belong to the majority ethnic group (white British); (4) those without a partner; and (5) people with lower socio-economic position. CONCLUSIONS: Our findings indicate that demographic characteristics and exposure to specific social determinants of poor health play a major role in the negative association between disability and personal wellbeing. A more sophisticated understanding of how social determinants interact to produce inequities associated with identities such as disability, gender, race, sexuality, and class (intersectionality) can inform effective policy interventions.

2.
Health Place ; 60: 102210, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31593846

RESUMO

The purpose of this paper is to critically reflect on the added value of video in ethnographic research that seeks to understand peoples' lived experiences of health and place. Of particular interest is the potential for video to elicit the embodied, multisensory and relational nature of people's place experiences that are the focus of much recent health geography research. We draw on our experiences of using video in an ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or 'green care') therapeutic interventions for health and wellbeing. We argue that video has the potential to capture aspects of people's wellbeing experiences that may be lost using other methods, such as observational field noting. Consideration is also given to how researchers using video methods should seek to (re)present people's wellbeing experiences, as well as the practical and ethical challenges that this approach has for those working in the field of health geography.

3.
BMC Public Health ; 19(1): 997, 2019 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-31340795

RESUMO

BACKGROUND: The term evidence based medicine was introduced in the early 1990s in clinical medicine to educate clinicians about how to assess the 'credibility' of research to ensure best treatments for their patients. The evidence based medicine paradigm has become more diffuse in times of austerity and randomised controlled designs are being used to address complex issues in public health and disability research. This research is not addressing inequalities in terms of disability nor how people can live well with disabilities. MAIN TEXT: We argue that there are four ways that public health research needs to change if it wants to address inequalities linked to disability: 1) rethinking theoretical connections between public health and disability; 2) building ethics and equity into interventions through a human rights approach; 3) ensuring ethical inclusion through intersectionality; and 4) evaluating policy and other social impacts to ensure they capture diversity. We argue that these are key issues to building a social determinants of flourishing. CONCLUSIONS: We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing.


Assuntos
Pessoas com Deficiência , Direitos Humanos , Saúde Pública/ética , Ensaios Clínicos Controlados Aleatórios como Assunto/ética , Determinantes Sociais da Saúde/ética , Ética em Pesquisa , Política de Saúde , Humanos , Fatores Socioeconômicos
4.
Child Dev ; 2019 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-31206633

RESUMO

A family developmental framework was applied to data from families of children with intellectual disabilities to understand the role of parenting in the path from early adversity to problem behaviors in mid-childhood. Data from 9 months to 11 years tested the Family Stress Model in families of 555 children. Adversarial parenting between 3 and 5 years mediated the path from early adversity (family poverty and maternal psychological distress at nine months) to problem behaviors at 7 and 11 years. Positive parent-child relationship only mediated the path to conduct problems. Multiple mediation was not present. Early adversity impacts both positive parent-child relationship and adversarial parenting between three and five, but the latter is crucial for problem behaviors in mid-childhood.

5.
BMC Public Health ; 19(1): 748, 2019 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-31196050

RESUMO

BACKGROUND: Universal childhood vaccination programmes form a core component of child health policies in most countries, including the UK. Achieving high coverage rates of vaccines is critical for establishing 'herd immunity' and preventing disease outbreaks. Evidence from the UK has identified several groups of children who are at risk of not being fully immunised. Our aim was to determine whether children with intellectual disabilities constitute one such group. METHODS: Secondary analysis of parental report data on child vaccination collected in the UK's Millennium Cohort Study when the children were 9 months, 3 years, 5 years and 14 years old. RESULTS: With one exception (MMR coverage at age 5) vaccination coverage rates were lower for children with intellectual disabilities (when compared to children without intellectual disability) for all vaccinations at all ages. Complete coverage rates were significantly lower for children with intellectual disabilities at ages 9 months (unadjusted PRR non-vaccination = 2.03 (1.14-3.60), p < 0.05) and 3 years (unadjusted PRR = 2.16 (1.06-4.43), p < 0.05), but not at age 5 years (unadjusted PRR = 1.91 (0.67-5.49)). HPV vaccination was lower (but not significantly so) at age 14 (PRR = 1.83 (0.99-3.37), p = 0.054). Adjusting PRRs for between group differences in family socio-economic position and other factors associated with coverage reduced the strength of association between intellectual disability and coverage at all ages. However, incomplete vaccination remained significantly elevated for children with intellectual disabilities at ages 9 months and 3 years. There were no statistically significant differences between parents of children with/without intellectual disability regarding the reasons given for non-vaccination. CONCLUSIONS: Children with intellectual disabilities in the UK are at increased risk of vaccine preventable diseases. This may jeopardise their own health, the health of younger siblings and may also compromise herd immunity.


Assuntos
Crianças com Deficiência/estatística & dados numéricos , Deficiência Intelectual/epidemiologia , Cobertura Vacinal/estatística & dados numéricos , Adolescente , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Reino Unido/epidemiologia
6.
J Appl Res Intellect Disabil ; 32(6): 1335-1348, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31180175

RESUMO

BACKGROUND: There is strong evidence indicating that paid employment is generally good for the physical and mental health of the general population. This systematic review considers the association between employment and the health of people with intellectual disabilities. METHODS: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Identified studies were reviewed narratively. RESULTS: Twelve studies were identified. Studies were generally consistent in reporting an association between being in paid employment and better physical or mental health status. CONCLUSIONS: This review supports the view that the well-established association between employment and better health is similar for adults with and without intellectual disabilities. However, evidence establishing causality is lacking and further research to determine specific health benefits attributable to employment for people with intellectual disabilities and the causal pathways that operate is required.

7.
J Appl Res Intellect Disabil ; 32(6): 1310-1334, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31169955

RESUMO

BACKGROUND: People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what we know about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK. METHOD: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. RESULTS: Twenty-three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services. CONCLUSION: Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care.

9.
Br J Haematol ; 187(2): 185-194, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31222719

RESUMO

Central nervous system (CNS) relapse following R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine, prednisolone) occurs in 2-5% of patents with diffuse large B-cell lymphoma (DLBCL). Many patients aged ≥70 years are unsuitable for high-dose methotrexate (HDMTX) prophylaxis and therefore often receive stand-alone intrathecal prophylaxis. The CNS international prognostic index (CNS-IPI) is a clinical CNS relapse risk score that has not specifically been validated in elderly patients. The value of CNS prophylaxis in patients aged ≥70 years remains uncertain. Data on 690 consecutively R-CHOP-treated DLBCL patients aged ≥70 years were collected across 8 UK centres (2009-2018). CNS prophylaxis was administered per physician preference. Median age was 77·2 years and median follow-up was 2·8 years. CNS-IPI was 1-3 in 60·1%, 4 in 23·8%, 5 in 13·0% and 6 in 3·3%. Renal and/or adrenal (R/A) involvement occurred in 8·8%. Two-year overall CNS relapse incidence was 2·6% and according to CNS-IPI, 1-3:0·8%, 4:3·6%, 5:3·8% and 6:21·8%. Two-year CNS relapse incidence for R/A was 10·0%. When excluding HDMTX (n = 31) patients, there remained no change in unadjusted/adjusted CNS relapse for intrathecal prophylaxis effect according to CNS-IPI. CNS-IPI is valid in elderly R-CHOP-treated DLBCL patients, with the highest risk in those with CNS-IPI 6 and R/A involvement. We observed no clear benefit for stand-alone intrathecal prophylaxis but observed an independent increased risk of infection-related admission during R-CHOP when intrathecal prophylaxis was administered.

10.
J Child Psychol Psychiatry ; 60(11): 1210-1218, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31225660

RESUMO

BACKGROUND: The study examined developmental trajectories of prosocial behaviours, internalising and externalising behaviour problems in children with intellectual disabilities (ID) between pre-school and middle childhood. METHOD: Growth models examined the best-fitting trajectories for internalising and externalising behaviour problems, as well as prosocial behaviours, in 555 children with ID between the ages of three and 11 years from the UK Millennium Cohort Study. Models were also fitted to examine the association of child outcomes with time-varying maternal psychological distress and life satisfaction. Finally, models were extended to compare trajectories with typically developing children. RESULTS: Externalising behaviour problems and prosocial behaviours generally improved, whereas internalising problems did not change systematically over time. A cubic trend indicated a slowing down of improvement between ages 5 and 7 for prosocial behaviours and externalising problems. Maternal psychological distress positively co-varied with internalising and externalising behaviour problems over time. Life satisfaction was not related to changes in child behaviours over time. Compared to behavioural trajectories in typical development, intercepts were worse and trajectories also differed in the ID group. CONCLUSIONS: Over an 8-year period, externalising behaviour problems and prosocial behaviours of children with ID tended to improve. These behavioural improvements slowed between five and seven years, possibly coinciding with school-related environmental changes. Children with ID significantly differ from children with typical development in both the initial level of difficulties (exhibiting higher externalising and internalising behaviours, and lower prosocial behaviours) and subsequent development as they age, showing comparatively lower decreases in both externalising and internalising behaviours, and lower increases in prosocial behaviours. Findings also highlight the significant role of maternal mental health problems in the trajectory of child behaviour problems.

11.
BMC Public Health ; 19(1): 706, 2019 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-31174506

RESUMO

BACKGROUND: Whilst people with intellectual disability grow older, evidence has emerged internationally about the largely unmet health needs of this specific ageing population. Health checks have been implemented in some countries to address those health inequalities. Evaluations have focused on measuring process outcomes due to challenges measuring quality of life outcomes. In addition, the cost-effectiveness is currently unknown. As part of a national guideline for this population we sought to explore the likely cost-effectiveness of annual health checks in England. METHODS: Decision-analytical Markov modelling was used to estimate the cost-effectiveness of a strategy, in which health checks were provided for older people with intellectual disability, when compared with standard care. The approach we took was explorative. Individual models were developed for a selected range of health conditions, which had an expected high economic impact and for which sufficient evidence was available for the modelling. In each of the models, hypothetical cohorts were followed from 40 yrs. of age until death. The outcome measure was cost per quality-adjusted life-year (QALY) gained. Incremental cost-effectiveness ratios (ICER) were calculated. Costs were assessed from a health provider perspective and expressed in 2016 GBP. Costs and QALYs were discounted at 3.5%. We carried out probabilistic sensitivity analysis. Data from published studies as well as expert opinion informed parameters. RESULTS: Health checks led to a mean QALY gain of 0.074 (95% CI 0.072 to 0.119); and mean incremental costs of £4787 (CI 95% 4773 to 5017). For a threshold of £30,000 per QALY, health checks were not cost-effective (mean ICER £85,632; 95% CI 82,762 to 131,944). Costs of intervention needed to reduce from £258 to under £100 per year in order for health checks to be cost-effective. CONCLUSION: Whilst findings need to be considered with caution as the model was exploratory in that it was based on assumptions to overcome evidence gaps, they suggest that the way health systems deliver care for vulnerable populations might need to be re-examined. The work was carried out as part of a national guideline and informed recommendations about system changes to achieve more equal health care provisions.


Assuntos
Continuidade da Assistência ao Paciente/economia , Acesso aos Serviços de Saúde/economia , Deficiência Intelectual/economia , Pessoas com Deficiência Mental/estatística & dados numéricos , Adulto , Idoso , Análise Custo-Benefício , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida
13.
J Appl Res Intellect Disabil ; 32(4): 819-830, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30762261

RESUMO

BACKGROUND: No studies have explored the acceptability of Behavioural Activation and Guided Self-Help interventions for depression with people who have intellectual disabilities. METHOD: Twenty-five participants were purposively sampled from participants taking part in a trial comparing Behavioural Activation with a Guided Self-Help intervention. A framework analysis was used to analyse interviews covering participants' expectations and views of therapy. RESULTS: Participants were largely positive about both interventions. However, they identified specific aspects of each intervention which they had found helpful. All participants valued the therapeutic relationship. The participants also had a number of criticisms and suggestions for improving the therapies. A common concern was the time-limited nature of the interventions and a wish for longer-term help. Overall, both sets of participants felt the interventions had relevance for their wider lives. CONCLUSIONS: The participants reported having positive engagement with the therapies but expressed a wish for longer-term supportive relationships.


Assuntos
Terapia Comportamental/métodos , Deficiência Intelectual/reabilitação , Pessoas com Deficiência Mental/reabilitação , Aceitação pelo Paciente de Cuidados de Saúde , Autocuidado/métodos , Adulto , Idoso , Terapia Comportamental/normas , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autocuidado/normas , Adulto Jovem
14.
Qual Health Res ; 29(7): 931-943, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30520345

RESUMO

There is a tendency to exclude people with intellectual disabilities from participating in research about their own lives. While the use of participatory research approaches is increasing, the methods used for engaging people with intellectual disabilities in research are generally limited to interviews and focus groups. Yet a focus on the spoken or written word can present a challenge for those who may prefer to use alternative forms of communication. The purpose of this article is to share the methodological insights gained from a visual ethnographic study that sought to explore the experiences of people with intellectual disabilities engaged in nature based (or "green care") therapeutic interventions for health and well-being. If used within carefully negotiated relationships, we suggest that video can be an empowering visual medium for doing research that can help to elicit the experiences of people with intellectual disabilities firsthand, without having to rely on the views and perspectives of other people.


Assuntos
Antropologia Cultural , Pessoas com Deficiência/psicologia , Deficiência Intelectual , Gravação em Vídeo , Comunicação , Humanos , Entrevistas como Assunto , Estudos Longitudinais , Observação , Pesquisa Qualitativa , Reino Unido
15.
J Appl Res Intellect Disabil ; 32(2): 323-335, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30264419

RESUMO

BACKGROUND: Clinicians recommend including carers or others in a supporting role in the therapy as an important adaptation of psychological therapies for people with intellectual disabilities. This nested qualitative study from a larger trial explored supporters' experiences of supporting people with intellectual disabilities receiving behavioural activation or guided self-help therapies for depression. METHOD: Twenty-one purposively sampled supporters were interviewed. The semi-structured interviews were subject to framework analysis, covering expectations of therapy, views of therapy sessions, relationships with therapist and participant, and perceived changes. RESULTS: Supporters were positive about both therapies and reported both therapy-specific and nonspecific therapeutic factors that had significant positive impacts on people's lives. Most supporters reported their involvement contributed to the interventions' effectiveness, and helped establish closer relationships to the people they were supporting. CONCLUSIONS: The presence of supporters within psychological therapies for people with intellectual disabilities can be an effective adaptation to therapies for this population.


Assuntos
Terapia Comportamental/métodos , Cuidadores , Depressão/terapia , Deficiência Intelectual/psicologia , Apoio Social , Adulto , Feminino , Humanos , Masculino , Pesquisa Qualitativa
16.
Br J Haematol ; 184(4): 547-557, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30467838

RESUMO

Allogeneic haematopoietic stem cell transplant (allo-HSCT) offers potentially curative therapy for patients with relapsed/refractory lymphoid malignancies. Reduced-intensity conditioning (RIC) with Alemtuzumab reduces transplant-related mortality and graft-versus-host disease (GvHD), but may be associated with increased risk of relapse. With the aim of studying the effect of GVHD and donor lymphocyte infusions (DLI) on relapse, we performed a retrospective study of 288 patients (57% non-Hodgkin lymphoma, 24% Hodgkin lymphoma and 19% chronic lymphocytic leukaemia; 58% were relapsed/refractory) who underwent RIC-Alemtuzumab-HSCT between 2000 and 2012. Median follow-up time for survivors was 64 months. Five-year overall survival, relapse incidence, GvHD/relapse-free survival and non-relapse mortality were 47%, 33%, 37% and 28% respectively. Cumulative incidence of grade II-IV acute and extensive chronic GvHD was 22% and 21% at 100 days and 5 years respectively. On multivariate analysis, presence of GvHD (P = 0·03) and unrelated donor type (P = 0·03) were protective of relapse. 62/288 patients received DLI for either mixed donor chimerism (prophylactic DLI, n = 37) or clinical relapse (therapeutic DLI, n = 25). Prophylactic and therapeutic DLI successfully converted the patient to full or stable mixed donor chimerism in 78% and 56% of patients respectively. These data demonstrate good long-term outcomes and support the concept of the graft-vs-lymphoma effect as a key protective factor against relapse following RIC-Alemtuzumab allo-HSCT for patients with mature lymphoid malignancies.


Assuntos
Alemtuzumab/administração & dosagem , Efeito Enxerto vs Tumor , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas , Leucemia Linfocítica Crônica de Células B/terapia , Linfoma/terapia , Condicionamento Pré-Transplante , Adolescente , Adulto , Idoso , Aloenxertos , Intervalo Livre de Doença , Feminino , Neoplasias Hematológicas/mortalidade , Humanos , Leucemia Linfocítica Crônica de Células B/mortalidade , Linfoma/mortalidade , Masculino , Pessoa de Meia-Idade , Recidiva , Taxa de Sobrevida
17.
Soc Sci Med ; 227: 10-20, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-29754783

RESUMO

Since Wil Gesler's earliest articulation (Gesler, 1992; Gesler, 1996) key thinkers in the field of therapeutic landscapes have sought to emphasise the embodied, contextual and wholly relational nature of the relationship that exists between people and place. However, the extant research has tended to focus on the relational healing experience as this occurs 'in the moment' and with reference to a specific location or site of healing, with less attention being paid to what happens to people when they return to their ordinary or everyday places. In this paper, we reflect on findings from visual ethnographic work (including photography and film) that explored the therapeutic landscape experiences of people with intellectual disabilities engaged in care farming interventions for health and wellbeing. The study also recruited farm staff and family members or carers to take part, and comprised 20 participants in total. Having identified a gap in our understanding, consideration is given to wider impact that engaging in these sorts of activities had on the everyday lives of the participants in this study. We argue that this study has identified two types of therapeutic journey that broadly fit the experiences of study participants. The first type of journey denotes landscape experiences that are transformative. Here the therapeutic power of the care farm landscape resides in the ability of activities conducted on care farms to influence other aspects of participants' lives in ways that promote wellbeing. By contrast, there is another type of journey where the therapeutic power of the care farm resides in its ability to ameliorate challenging or harmful life situations, thus offering people a temporary site of respite or refuge. We conclude that these findings denote an important development for this sub-field of health geography, not only because they draw attention to the transformative power of the therapeutic encounter, but also the broader socio-spatial environments in which people live and ways in which these can limit that power.

18.
BMC Health Serv Res ; 18(1): 931, 2018 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-30509323

RESUMO

BACKGROUND: The UK Equality Act 2010 requires providers of health services to make changes or 'reasonable adjustments' to their practices in order to protect disabled people from discrimination or disadvantage when accessing care. Existing evidence suggests that despite this legislation, health services are not always providing reasonably adjusted care for disabled people. This paper presents the perspectives of disabled people themselves in relation to their experiences of accessing reasonable adjustments in hospitals in England. METHODS: Twenty-one semi-structured interviews were held with disabled people who had a recent experience of hospital care in England. Participants were asked about the extent to which the hospital provided reasonably adjusted care, and if necessary, how they thought the provision of reasonable adjustments could be improved. Each interview was anonymised and transcribed, and the data analysed using thematic analysis. RESULTS: Participants reported mixed experiences about whether and how reasonable adjustments were provided: some shared positive examples of good practice; others spoke about difficult encounters and limited provision. Recommendations made include a need for culture change in how reasonable adjustments are perceived and enacted; improvements in identifying the needs of disabled people; improvements to the hospital environment and the provision of information; and the need to involve disabled people themselves in the process of change. CONCLUSIONS: Gaps remain in how reasonable adjustments are provided for disabled people accessing hospital care. It is important for hospital staff to listen to the perspectives of disabled people about the provision of reasonable adjustments, and make improvements as necessary. Hospital staff could also do more to share good practice in relation to the provision of reasonable adjustments to effectively inspire and embed positive change.


Assuntos
Pessoas com Deficiência , Acesso aos Serviços de Saúde/normas , Hospitais/normas , Adolescente , Adulto , Idoso , Inglaterra , Feminino , Disparidades em Assistência à Saúde/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Recursos Humanos em Hospital/normas , Prática Profissional/normas , Relações Profissional-Paciente , Pesquisa Qualitativa , Adulto Jovem
19.
Int J Equity Health ; 17(1): 159, 2018 10 22.
Artigo em Inglês | MEDLINE | ID: mdl-30348176

RESUMO

BACKGROUND: People with intellectual disabilities (ID) may not be able to access and respond to uniformly delivered health interventions. Public bodies have a legal duty to make 'reasonable adjustments' to policies and practices to provide fair access and treatment for people with ID. This study aimed to identify adjustments to the Slimming World weight management programme to improve accessibility and assess acceptability and feasibility for this population. METHODS: This user-centred qualitative study was carried out with a steering group of people with ID (n = 4). Barriers and facilitators to using Slimming World were identified through interviews and focus groups with people with ID (n = 54), carers (n = 12) current members with ID (n = 8) and Slimming World group leaders (n = 11). Adjustments were made and their feasibility and acceptability were explored in a before-and-after mixed methods study where people with ID attended Slimming World for eight weeks. Participants (n = 9), carers (n = 7) and Slimming World group leaders (n = 4) were interviewed to explore their experiences of the adjustments. Participants were weighed at baseline then each week. RESULTS: Four key adjustments were identified and addressed by Slimming World who developed prototype Easy Read materials and a letter for carers. Six of the nine participants attended Slimming World for eight weeks and lost weight (1.4 kg to 6.6 kg, reduction in BMI between 0.5 and 1.7 kg/m2), indicating that the adjustments were feasible and acceptable. Two participants dropped out because they felt uncomfortable in a mainstream group and another left because they lacked control over food choice in their residential setting. CONCLUSIONS: This user-centred approach identified reasonable adjustments that were feasible to implement. In a small uncontrolled feasibility study, people with ID were positive about the adjustments and lost weight. However, issues in the wider context of people's lives, such as obesogenic environments and concerns about joining mainstream groups, limited the acceptability of Slimming World even with these adjustments. These findings have important implications for policy and suggest that environmental and organisational level interventions are needed alongside those targeting individual behaviour to tackle the obesogenic environment in which many people with ID spend their time, in order to reduce inequalities associated with the consequences of obesity.


Assuntos
Promoção da Saúde/métodos , Acesso aos Serviços de Saúde/estatística & dados numéricos , Deficiência Intelectual/terapia , Obesidade/terapia , Adulto , Estudos de Viabilidade , Feminino , Grupos Focais , Humanos , Deficiência Intelectual/complicações , Obesidade/complicações , Pesquisa Qualitativa , Discriminação Social
20.
Lancet Oncol ; 19(10): 1328-1337, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-30220622

RESUMO

BACKGROUND: Adverse effects on reproductive function are a key concern in young women treated with chemotherapy for advanced Hodgkin's lymphoma. We aimed to identify risk factors for the extent of ovarian damage in women with Hodgkin's lymphoma treated with different chemotherapy regimens to inform accurate advice on options for fertility preservation. METHODS: We recruited female participants from the randomised phase 3 RATHL trial, aged 18-45 years, based on availability of participants at recruiting sites in the UK. The RATHL trial key inclusion criteria were histologically confirmed classic Hodgkin's lymphoma, stage IIB-IV or IIA with adverse features (bulky disease or more than two sites of involvement), no previous treatments, and a performance status of 0-3. As part of RATHL, participants were treated with two cycles of doxorubicin, bleomycin, vinblastine, and dacarbazine (ABVD) or AVD followed by an interim PET-CT scan. Participants who had negative interim scans (PET score of 1 to 3 according to the Lugano classification) were randomly assigned (1:1) by use of minimisation, stratified by interim PET score and study centre, to continue ABVD or AVD for four more cycles. Participants with positive scans (PET score of 4 or 5) were escalated to treatment with bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisolone (BEACOPP-14 or escalated BEACOPP) for four cycles. For the protocol-driven prospective cohort substudy, ovarian function was assessed before treatment, during chemotherapy, and then annually for 3 years by use of serum antimüllerian hormone and follicle-stimulating hormone measurements. The RATHL study is registered with ClinicalTrials.gov, number NCT00678327. FINDINGS: Between Dec 13, 2010, and Dec 19, 2012, 67 eligible participants were recruited for this prospective cohort study; 57 had received ABVD or AVD (ABVD-AVD group) and ten BEACOPP-14 or escalated BEACOPP (BEACOPP group). Follow-up was fixed at 3 years. Antimüllerian hormone concentrations decreased during both chemotherapy regimens. At 1 year after chemotherapy, antimüllerian hormone concentrations recovered to a median of 10·5 pmol/L (IQR 4·3-17·3) in the ABVD-AVD group, but little recovery was seen after BEACOPP (median 0·11 pmol/L [0·07-0·20]). Age also affected the extent of ovarian function recovery, with antimüllerian hormone recovery in participants aged 35 years or older in the ABVD-AVD group to 37% (SD 10) of their before treatment concentrations, compared with full recovery to 127% (SD 12) in those younger than 35 years (p<0·0001). Follicle-stimulating hormone recovery to less than 25 IU/L occurred for 95% of women younger than 35 years in the ABVD-AVD group by 2 years and was also dependent on age (hazard ratio 0·49, 95% CI 0·37-0·65; p<0·0001). INTERPRETATION: Reduced recovery of ovarian function observed in women older than 35 years treated with ABVD or AVD compared with younger women indicates that treatment could reduce their reproductive lifespan and supports discussion of fertility preservation before treatment. Women treated with BEACOPP should be informed of its potential high gonadotoxicity. These findings warrant further investigation in large, prospective studies with fertility and reproductive lifespan as outcomes. FUNDING: Medical Research Foundation and Cancer Research UK.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Doença de Hodgkin/tratamento farmacológico , Infertilidade Feminina/induzido quimicamente , Ovário/efeitos dos fármacos , Adolescente , Adulto , Fatores Etários , Hormônio Antimülleriano/sangue , Biomarcadores/sangue , Feminino , Preservação da Fertilidade , Hormônio Foliculoestimulante Humano/sangue , Doença de Hodgkin/diagnóstico por imagem , Doença de Hodgkin/patologia , Humanos , Infertilidade Feminina/sangue , Infertilidade Feminina/fisiopatologia , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Ovário/metabolismo , Ovário/fisiopatologia , Tomografia Computadorizada com Tomografia por Emissão de Pósitrons , Estudos Prospectivos , Recuperação de Função Fisiológica , Medição de Risco , Fatores de Risco , Fatores de Tempo , Resultado do Tratamento , Reino Unido , Adulto Jovem
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA