Dataset Information

A Qualitative Research Study of Experiences and Perceptions of People Living with Insulin Resistance Syndrome or Lipoatrophic Diabetes in Japan.

ABSTRACT:

Introduction

There are few reports on the experiences and perceptions of people living with the rare diseases of insulin resistance syndrome or lipodystrophy. This study was designed to identify treatment experiences and perceptions of disease-related burdens among affected people, as well as their needs and priorities. We discussed how to meet identified needs and expectations, in addition to the types of therapeutic drugs and support required.

Methods

Qualitative data regarding participants' experiences and perceptions of the diseases were collected through individual interviews, advisory board meetings, and individual follow-up activities. Verbatim transcripts from recorded participants' statements were qualitatively analysed.

Results

Four women aged 30-41 years participated in the study, two with insulin resistance syndrome and two with lipoatrophic diabetes. The diseases not only took a heavy physical toll on these women, but they and their families were also affected psychologically, with some experiencing stigmatisation. There was a lack of information for participants about their disease and little public awareness of the disease. The needs identified include initiatives to promote an accurate understanding of these diseases, information booklets, consultation service for those affected by the diseases, less burdensome treatment options, and opportunities for peer communication.

Conclusion

People living with insulin resistance syndrome or lipoatrophic diabetes have significant physical/psychological burdens and unmet needs. The following are highly desirable to alleviate the burdens: promoting proper understanding of the diseases; establishing a framework for dissemination of disease and treatment information to those living with the diseases; development of therapeutic drugs for these diseases; educational materials that raise public awareness; and opportunities for peer communication.

Trial registration

UMIN Clinical Trials Registry (UMIN000043693). A Japanese translation is available for this article.

SUBMITTER: Yagi N

PROVIDER: S-EPMC10299960 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

A Qualitative Research Study of Experiences and Perceptions of People Living with Insulin Resistance Syndrome or Lipoatrophic Diabetes in Japan.

Yagi Nobutaka N Toda Akiko A Mitani Kimiko K Kotobuki Yutaro Y Ogawa Wataru W

Diabetes therapy : research, treatment and education of diabetes and related disorders 20230608 8

<h4>Introduction</h4>There are few reports on the experiences and perceptions of people living with the rare diseases of insulin resistance syndrome or lipodystrophy. This study was designed to identify treatment experiences and perceptions of disease-related burdens among affected people, as well as their needs and priorities. We discussed how to meet identified needs and expectations, in addition to the types of therapeutic drugs and support required.<h4>Methods</h4>Qualitative data regarding ...[more]

PMID: 37289357

Similar Datasets

Project description:BackgroundIntergenerational programmes are formal activities bringing different generations together and have been identified as a way to help people living with dementia to stay socially connected. While there is some evidence from individual studies as to their benefits, there is no overall coherent account as to the perceptions and experiences of participants who engage in such programmes. This review synthesises qualitative evidence of the experiences and perceptions of young people and older people living with dementia of participating in such programmes.MethodsWe searched EBSCO CINAHL, OVID Medline, Embase, Ovid PsycINFO, the Web of Science, Epistemonikos and grey literature sources. We used thematic synthesis to analyse and synthesise the evidence in to four themes, with 11 key findings. We assessed our confidence in each of these findings using the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach.FindingsOur review highlights the potential enjoyment for young people and older people living with dementia when participating in Intergenerational programmes, despite some initial trepidation. These programmes provide an opportunity to establish and develop relationships and for young people to learn about dementia, ageing and how to interact with older people living with dementia. However, it is important to have staff facilitators present to provide reassurance to both groups. It is also important to take the personal preferences of participants into account and to be considerate of noise levels and other aspects of programme delivery that may inhibit engagement.ConclusionThis is the first qualitative evidence synthesis specifically exploring Intergenerational programmes aimed at older people living with dementia. We provide insights into the perspectives of those who have participated in Intergenerational programmes. It is important to consider these views, together with other evidence of effectiveness, when planning Intergenerational programmes. While our review is limited by a small number of studies from only a few countries, we have moderate to high confidence in our findings. Further research into the development of Intergenerational programmes specifically tailored for people living with dementia is needed. The findings also provide guidance for people planning to deliver or design future Intergenerational programmes.

Project description:IntroductionAntiretroviral treatment turned HIV infection into a chronic disease and improved quality of life for people living with HIV. Dual-drug combinations have been shown to be effective in suppressing viral replication and can potentially reduce long-term drug-associated toxicities. We aim to investigate patients' perceptions and experiences on the safety, effectiveness, tolerability and unmet needs of the dual-drug combination dolutegravir/lamivudine in Brighton and Hove, UK. In addition, we will conduct a comparative analysis between patients on dolutegravir/lamivudine and patients on other dual-drug and three-drug combinations. Finally, the study aims to provide recommendations to improve doctor-patient communication, knowledge and understanding of the treatment plan, and additional care that ought to be considered in patient-centred, holistic care plans.Methods and analysisOur qualitative methodological framework is based on three main methods: cultural domain analysis, focus group discussions and in-depth interviews. Cultural domain analysis employs a range of techniques (free listing, pile sorts and rankings) to elicit terms from informants regarding specific cultural domains (ie, groups of items that are perceived to be of the same kind). This framework has been codesigned with a patient representative to ensure relevance, suitability and coproduction of knowledge. All methods have been tested to take place online, as an option, via Zoom, Skype or Microsoft Teams. Padlet, an application to create online boards, will be used during the cultural domain analysis session. Data collected will be analysed following the completion of each method embracing an iterative approach through applied thematic analysis.Ethics and disseminationEthical approval was obtained from the Health Research Authority (Reference 21/NW/0070). Findings will be used to produce recommendations to improve doctor and patient communication by identifying patients' fears, worries, misconceptions and general concerns of their drug regimen. Conclusions will be disseminated via journal articles, conference papers and discussions through public engagement events.Project registration numberIRAS number: 286277. NCT04901728.

Project description:BackgroundThymidine phosphorylase (TP), encoded by the TYMP gene, is a cytosolic enzyme essential for the nucleotide salvage pathway. TP catalyzes the phosphorylation of the deoxyribonucleosides, thymidine and 2'-deoxyuridine, to thymine and uracil. Biallelic TYMP variants are responsible for Mitochondrial NeuroGastroIntestinal Encephalomyopathy (MNGIE), an autosomal recessive disorder characterized in most patients by gastrointestinal and neurological symptoms, ultimately leading to death. Studies on the impact of TYMP variants in cellular systems with relevance to the organs affected in MNGIE are still scarce and the role of TP in adipose tissue remains unexplored.MethodsDeep phenotyping was performed in three patients from two families carrying homozygous TYMP variants and presenting with lipoatrophic diabetes. The impact of the loss of TP expression was evaluated using a CRISPR-Cas9-mediated TP knockout (KO) strategy in human adipose stem cells (ASC), which can be differentiated into adipocytes in vitro. Protein expression profiles and cellular characteristics were investigated in this KO model.ResultsAll patients had TYMP loss-of-function variants and first presented with generalized loss of adipose tissue and insulin-resistant diabetes. CRISPR-Cas9-mediated TP KO in ASC abolished adipocyte differentiation and decreased insulin response, consistent with the patients' phenotype. This KO also induced major oxidative stress, altered mitochondrial functions, and promoted cellular senescence. This translational study identifies a new role of TP by demonstrating its key regulatory functions in adipose tissue.ConclusionsThe implication of TP variants in atypical forms of monogenic diabetes shows that genetic diagnosis of lipodystrophic syndromes should include TYMP analysis. The fact that TP is crucial for adipocyte differentiation and function through the control of mitochondrial homeostasis highlights the importance of mitochondria in adipose tissue biology.

Project description:BackgroundExcessive infant crying is common and can have a huge impact on families and well-being. Systematically reviewing qualitative studies on infant crying can provide a greater understanding of parental perceptions and experiences.AimThis study sought to systematically review and thematically synthesize qualitative studies exploring parents/carers' views and experiences of infant crying.DesignA systematic review and synthesis of qualitative research.Data sourcesElectronic databases MEDLINE, EMBASE, PsycINFO and CINAHL were searched from the earliest date available to January 2022. We selected papers focussing on parents/carers' experiences, views, attitudes and beliefs about infant crying. We excluded papers focussing on health professionals' views and children older than 12 months.Review methodsThematic synthesis was followed for the analysis of included studies and quality appraisal was conducted.ResultsWe synthesized 22 papers, reporting data from 376 participants in eight countries. Four analytical themes were developed: (1) Experiences and impact of crying; (2) parental management strategies; (3) the role of the health professional; (4) the role of infant feeding and maternal diet. Our findings suggest that infant crying has a substantial emotional impact on parents/carers that often impacts relationships. Parents/carers reported using a range of soothing techniques and coping strategies but were desperate to find effective treatment or cure. Support was often perceived as lacking. Excessive crying and beliefs about the role of maternal diet on breastmilk were reported to undermine parents' confidence in breastfeeding by making them feel their milk is insufficient or harmful, or through pressure from others to stop breastfeeding.ConclusionParents/carers use a range of strategies to interpret and deal with the challenges of infant crying, but there is a need for more information and support.ImpactFindings can be used to inform future research and interventions to support families experiencing excessive infant crying.

Project description:BackgroundPeople living with HIV (PLWH) have low levels of physical activity. Using the social ecological model to understand perceptions, facilitators and barriers of physical activity in this population is of importance for developing contextualised interventions to improve physical activity in PLWH.MethodThis was a qualitative sub-study conducted between august and November 2019 as part of a cohort study on diabetes and associated complications in HIV infected in Mwanza, Tanzania. Sixteen in-depth interviews and three focus groups with nine participants in each were conducted. The interviews and focus groups were audio recorded, transcribed and translated into English. The social ecological model was considered during the coding and interpretation of the results. Transcripts were discussed, coded and analyzed using deductive content analysis.ResultsForty-three PLWH aged 23-61 years participated in this study. The findings showed that most PLWH perceived physical activity as beneficial to their health. However, their perceptions of physical activity were rooted within existing gender stereotypes and roles in the community. Running and playing football were perceived as activities for men while household chores activities were for women. Further, men were perceived to do more physical activity than women. For women, household chores and income-generating activities were perceived as sufficient physical activity. Social support and engagement of family members and friends in physical activity were reported as facilitators of physical activity. Reported barriers of physical activity were lack of time, money, availability of physical activity facilities and social support groups, and poor information on physical activity from health care providers in HIV clinics. Human-immunodeficiency virus (HIV) HIV infection was not perceived by PLWH as a barrier for doing physical activity but most family members did not support them to do physical activity, fearing that it might worsen their condition.ConclusionThe findings demonstrated differing perceptions, facilitators and barriers of physical activity among PLWH. Interventions addressing awareness, gender stereotypes and roles related to physical activity from individual to community level are needed. Supportive environment and infrastructures are needed to improve physical activity levels in PLWH in Tanzania.

Project description:IntroductionObesity and type 2 diabetes mellitus (T2DM) are growing global health concerns associated with significant morbidity, mortality and healthcare expenditures. Due to histories of colonisation and contemporary marginalisation, Canada's Indigenous populations are disproportionately burdened by obesity, T2DM and many other chronic illnesses. Culturally appropriate research on experiences and outcomes of Indigenous patients undergoing bariatric surgery in Canada is scarce. This qualitative study protocol will use a decolonising approach guided by an Indigenous Elder to explore the perspectives and experiences of urban Indigenous Manitobans with respect to T2DM, obesity and bariatric surgery. This knowledge will guide the development and implementation of culturally sensitive bariatric care.Methods and analysisSequential sharing circles (SSCs) and semistructured conversational interviews that have been purposefully designed to be culturally relevant with the guidance of an Indigenous Elder and advisory group (IAG) will be carried out in Winnipeg, Manitoba, Canada. Indigenous adults who are obese (body mass index >35 kg/m2), have T2DM and live in an urban centre will be recruited. Three groups will be investigated: (1) those who have had bariatric surgery; (2) those on the wait list for bariatric surgery and (3) those not associated with a bariatric surgery programme. Each group of 10-12 participants will be guided through a semistructured script led by an Indigenous Elder. Elder-facilitated conversational interviews will also be completed following the SSCs. All content will be audio recorded and transcribed. Thematic analysis will be used to identify emerging patterns using a constructive grounded theory approach.Ethics and disseminationThis study has received ethical approval from the University of Manitoba Health Research Ethics Board. Findings will inform the development and implementation of culturally sensitive programmes at Manitoba's Centre for Metabolic and Bariatric Surgery. Results will be disseminated in peer-reviewed scientific journals, at obesity and Indigenous health conferences, and knowledge sharing ceremonies.

Dataset Information

A Qualitative Research Study of Experiences and Perceptions of People Living with Insulin Resistance Syndrome or Lipoatrophic Diabetes in Japan.

Introduction

Methods

Results

Conclusion

Trial registration

Publications

A Qualitative Research Study of Experiences and Perceptions of People Living with Insulin Resistance Syndrome or Lipoatrophic Diabetes in Japan.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets