Journal Articles
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Item Amplifying Women's Voices in Menopause Research: The Importance of Inclusive Perspectives(John Wiley and Sons Ltd, 2025-02) Cronin C; Donevant S; Hughes K-A; Kaunonen M; Marcussen J; Wilson RMenopause, a significant life transition for half the global population, intersects biological, cultural and social dimensions. Despite its universal occurrence, menopause research has historically been dominated by biomedical perspectives, often neglecting women's voices and diverse experiences. This article highlights the importance of including women's perspectives in menopause research to ensure relevance, accuracy and equity. It explores cultural variations in menopause experiences, the impact of socioeconomic status and the often-overlooked emotional and psychological dimensions. This article advocates for participatory approaches, emphasising that women's involvement enhances research design, implementation and policy development. Evidence-based interventions that are tailored to the individual can better address the diverse needs of menopausal women. The discussion extends to addressing health disparities, calling for inclusive research and policies to ensure equitable access to care. Ultimately, empowering women through co-designed research and inclusive policies can transform the menopause journey into an enriching life phase, promoting resilience and inclusivity across communities. This paradigm shift in menopause research and policy highlights the need for diversity, collaboration and evidence-based approaches to improve health outcomes and quality of life for all women. PATIENT OR PUBLIC CONTRIBUTION: This article has been informed by a menopause service user group who discuss their experiences of menopause. The group was formed because of initial qualitative research and now meet on a regular basis to co-design and co-produce activities that inform ongoing research for the menopause taskforce.Item Using network analysis to identify factors influencing the heath-related quality of life of parents caring for an autistic child(Elsevier Ltd., 2024-09-01) Shepherd D; Buchwald K; Siegert RJ; Vignes MBACKGROUND: Raising an autistic child is associated with increased parenting stress relative to raising typically developing children. Increased parenting stress is associated with lower parent wellbeing, which in turn can negatively impact child wellbeing. AIMS: The current study sought to quantify parenting stress and parent health-related quality of life (HRQOL) in the autism context, and further understand the relationship between them by employing a relatively novel statistical method, Network Analysis. METHODS AND PROCEDURES: This cross-sectional study involved 476 parents of an autistic child. Parents completed an online survey requesting information on parent and child characteristics, parent's perceptions of their autistic child's symptoms and problem behaviours, and assessed their parenting stress and HRQOL. OUTCOMES AND RESULTS: Relative to normative data, parent HRQOL was significantly lower in terms of physical health and mental wellbeing. The structure extracted by the Network Analysis indicated that child age and externalising behaviours were the main contributors to parenting stress, and that externalising behaviours, ASD core behavioural symptoms, and parenting stress predicted HRQOL. CONCLUSIONS AND IMPLICATIONS: Parental responses to child-related factors likely determine parent HRQOL. Findings are discussed in relation to the transactional model, emphasising the importance of both parent and child wellbeing.Item Protothecosis in four dogs in New Zealand.(Taylor and Francis Group, 2023-09-04) Price PSA; Klobukowska HJ; Castillo-Alcala F; Foxwell JA; Orbell GMB; Brown S; Irving ACCASE HISTORIES: Medical records of four dogs diagnosed with protothecosis in New Zealand were reviewed. The dogs were aged between 4 and 9 years and three of the four dogs were female. Breeds were one Labrador, one Miniature Schnauzer and two crossbreeds. The reasons for initial veterinary evaluation were a cough and opaque appearance of the right eye (Case 1), diarrhoea (Cases 2 and 3), and cutaneous disease (Case 4). CLINICAL FINDINGS: The ocular signs were characterised by panuveitis, retinal detachment and secondary glaucoma. Gastrointestinal signs included chronic haemorrhagic diarrhoea due to colitis. Three cases had disseminated infection and developed both bilateral, blinding, ocular disease and chronic gastrointestinal disease. Cutaneous signs consisted of draining fistulae over the olecranon, multifocal cutaneous nodules, and ulceration and tracts of the foot pads. Disseminated protothecosis was confirmed by histopathology of biopsied ocular tissues in Cases 1 and 2 and by gastrointestinal biopsies in Case 3. Prototheca spp. were also identified in cytological specimens from Cases 1 and 4 and recovered by culture in Cases 2 and 4. Cutaneous protothecosis was diagnosed in Case 4 initially by cytology and histopathology of skin lesions, and Prototheca zopfii was confirmed by PCR of cultured organisms. TREATMENT AND OUTCOME: Prior to diagnosis of protothecosis, a variety of treatments were prescribed to treat the gastrointestinal and ocular signs. After diagnosis, only Cases 2 and 4 received medication aimed at treating the protothecal infection, which was itraconazole in both cases. Following the progression of clinical signs and concerns about quality of life, all four dogs were euthanised. DIAGNOSIS: Disseminated protothecosis in three dogs, cutaneous protothecosis in one dog. CLINICAL RELEVANCE: Canine protothecosis is rarely reported, despite the ubiquity of the causal algae, and the disease usually carries an extremely grave prognosis when infection is generalised. In New Zealand, protothecosis should be considered as a differential diagnosis in dogs with panuveitis, chorioretinitis or retinal detachment, colitis, or nodular, ulcerative or fistulating cutaneous lesions.Item A multidomain intervention against cognitive decline in an at-risk-population in Germany: Results from the cluster-randomized AgeWell.de trial.(John Wiley and Sons, Inc., 2024-01-01) Zülke AE; Pabst A; Luppa M; Roehr S; Seidling H; Oey A; Cardona MI; Blotenberg I; Bauer A; Weise S; Zöllinger I; Sanftenberg L; Brettschneider C; Döhring J; Lunden L; Czock D; Haefeli WE; Wiese B; Hoffmann W; Frese T; Gensichen J; König H-H; Kaduszkiewicz H; Thyrian JR; Riedel-Heller SGINTRODUCTION: We investigated the effectiveness of a multidomain intervention to preserve cognitive function in older adults at risk for dementia in Germany in a cluster-randomized trial. METHODS: Individuals with a Cardiovascular Risk Factors, Aging, and Dementia (CAIDE) risk score ≥ 9 aged 60 to 77 years were recruited. After randomization of their general practitioner (GP), patients received a multidomain intervention (including optimization of nutrition and medication, and physical, social, and cognitive activity) or general health advice and GP treatment as usual over 24 months. Primary outcome was global cognitive performance (composite z score, based on domain-specific neuropsychological tests). RESULTS: Of 1030 participants at baseline, n = 819 completed the 24-month follow-up assessment. No differences regarding global cognitive performance (average marginal effect = 0.010, 95% confidence interval: -0.113, 0.133) were found between groups at follow-up. Perceived restrictions in intervention conduct by the COVID-19 pandemic did not impact intervention effectiveness. DISCUSSION: The intervention did not improve global cognitive performance. HIGHLIGHTS: Overall, no intervention effects on global cognitive performance were detected. The multidomain intervention improved health-related quality of life in the total sample. In women, the multidomain intervention reduced depressive symptoms. The intervention was completed during the COVID-19 pandemic.Item Exploring digital interventions to facilitate coping and discomfort for nurses experiencing the menopause in the workplace: An international qualitative study.(John Wiley and Sons Ltd, 2023-05-09) Cronin C; Bidwell G; Carey J; Donevant S; Hughes K-A; Kaunonen M; Marcussen J; Wilson RINTRODUCTION: The global nursing workforce is predominantly female, with a large proportion working in the 45-55 age group. Menopause is a transition for all women, and; therefore needs recognition as it can impact work performance and consequently staff turnover. BACKGROUND: Women will go through the menopause, but not all women are affected. The menopause transition presents a range of signs and symptoms both physical and psychological which can impact the quality of life and individuals' work/life balance. The nursing workforce is predominantly women that will work through the menopause transition. OBJECTIVES: The study explored perspectives on digital health interventions as strategies to support menopausal women and to understand the requirements for designing health interventions for support in the workplace. DESIGN: A qualitative explorative design. SETTINGS: Nurses working in a range of clinical settings in England, Finland, Denmark, New Zealand, Australia and USA. METHODS: Nurses (n = 48) participated in focus groups from six different countries from February 2020-June 2022 during the pandemic from a range of acute, primary care and education settings. Nurses were invited to participate to share their experiences. Thematic analysis was used. RESULTS: All participants were able to describe the physical symptoms of menopause, with some cultural and possible hemisphere differences; more noticeable was the psychological burden of menopause and fatigue that is not always recognized. Four themes were identified: Managing symptoms in the workplace; Recognition in the workplace; Menopause interventions; and Expectation versus the invisible reality. These themes revealed information that can be translated for implementation into digital health interventions. CONCLUSIONS: Managers of nursing female staff in the menopausal age range need greater awareness, and menopause education should involve everyone. Finally, our results demonstrate design attributes suitable for inclusion in digital health strategies that are aligned with likely alleviation of some of the discomforts of menopause. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.Item Protocol for the Gut Bugs in Autism Trial: a double-blind randomised placebo-controlled trial of faecal microbiome transfer for the treatment of gastrointestinal symptoms in autistic adolescents and adults.(BMJ Publishing Group, 2024-02-06) Tweedie-Cullen RY; Leong K; Wilson BC; Derraik JGB; Albert BB; Monk R; Vatanen T; Creagh C; Depczynski M; Edwards T; Beck K; Thabrew H; O'Sullivan JM; Cutfield WSINTRODUCTION: Autism (formally autism spectrum disorder) encompasses a group of complex neurodevelopmental conditions, characterised by differences in communication and social interactions. Co-occurring chronic gastrointestinal symptoms are common among autistic individuals and can adversely affect their quality of life. This study aims to evaluate the efficacy of oral encapsulated faecal microbiome transfer (FMT) in improving gastrointestinal symptoms and well-being among autistic adolescents and adults. METHODS AND ANALYSIS: This double-blind, randomised, placebo-controlled trial will recruit 100 autistic adolescents and adults aged 16-45 years, who have mild to severe gastrointestinal symptoms (Gastrointestinal Symptoms Rating Scale (GSRS) score ≥2.0). We will also recruit eight healthy donors aged 18-32 years, who will undergo extensive clinical screening. Recipients will be randomised 1:1 to receive FMT or placebo, stratified by biological sex. Capsules will be administered over two consecutive days following an overnight bowel cleanse with follow-up assessments at 6, 12 and 26 weeks post-treatment. The primary outcome is GSRS score at 6 weeks. Other assessments include anthropometry, body composition, hair cortisol concentration, gut microbiome profile, urine/plasma gut-derived metabolites, plasma markers of gut inflammation/permeability and questionnaires on general well-being, sleep quality, physical activity, food diversity and treatment tolerability. Adverse events will be recorded and reviewed by an independent data monitoring committee. ETHICS AND DISSEMINATION: Ethics approval for the study was granted by the Central Health and Disability Ethics Committee on 24 August 2021 (reference number: 21/CEN/211). Results will be published in peer-reviewed journals and presented to both scientific and consumer group audiences. TRIAL REGISTRATION NUMBER: ACTRN12622000015741.Item Enhancing health outcomes for Māori elders through an intergenerational cultural exchange and physical activity programme: a cross-sectional baseline study(Frontiers Media S.A., 2023-12-12) Oetzel JG; Zhang Y; Nock S; Meha P; Huriwaka H; Vercoe M; Tahu T; Urlich J; Warbrick R; Brown G; Keown S; Rewi P; Erueti B; Warbrick I; Jackson A-M; Perry T; Reddy R; Simpson ML; Cameron MP; Hokowhitu B; Rashedi VBACKGROUND: The study offers baseline data for a strengths-based approach emphasizing intergenerational cultural knowledge exchange and physical activity developed through a partnership with kaumātua (Māori elders) and kaumātua service providers. The study aims to identify the baseline characteristics, along with correlates of five key outcomes. METHODS: The study design is a cross-sectional survey. A total of 75 kaumātua from six providers completed two physical functioning tests and a survey that included dependent variables based in a holistic model of health: health-related quality of life (HRQOL), self-rated health, spirituality, life satisfaction, and loneliness. RESULTS: The findings indicate that there was good reliability and moderate scores on most variables. Specific correlates included the following: (a) HRQOL: emotional support (β = 0.31), and frequent interaction with a co-participant (β = 0.25); (b) self-rated health: frequency of moderate exercise (β = 0.32) and sense of purpose (β = 0.27); (c) spirituality: sense of purpose (β = 0.46), not needing additional help with daily tasks (β = 0.28), and level of confidence with cultural practices (β = 0.20); (d) life satisfaction: sense of purpose (β = 0.57), frequency of interaction with a co-participant (β = -0.30), emotional support (β = 0.25), and quality of relationship with a co-participant (β = 0.16); and (e) lower loneliness: emotional support (β = 0.27), enjoyment interacting with a co-participant (β = 0.25), sense of purpose (β = 0.24), not needing additional help with daily tasks (β = 0.28), and frequency of moderate exercise (β = 0.18). CONCLUSION: This study provides the baseline scores and correlates of important social and health outcomes for the He Huarahi Tautoko (Avenue of Support) programme, a strengths-based approach for enhancing cultural connection and physical activity.Item Health Care Services Utilization and Health-Related Quality of Life of Syrian Refugees with Post-Traumatic Stress Symptoms in Germany (the Sanadak Trial)(MDPI (Basel, Switzerland), 2021-04-01) Grochtdreis T; Röhr S; Jung FU; Nagl M; Renner A; Kersting A; Riedel-Heller SG; König H-H; Dams JRefugees who have fled from the ongoing civil war in Syria that arrived in Germany often develop post-traumatic stress symptoms (PTSS). The aim of this study was to determine health care services utilization (HCSU), health care costs and health-related quality of life (HrQoL) of Syrian refugees with mild to moderate PTSS without current treatment in Germany. The study was based on the baseline sample of a randomized controlled trial of a self-help app for Syrian refugees with PTSS (n = 133). HCSU and HrQoL based on the EQ-5D-5L and its visual analogue scale (EQ-VAS) were assessed with standardized interviews. Annual health care costs were calculated using extrapolated four-month HCSU and standardized unit costs. Associations between health care costs, HrQoL and PTSS severity were examined using generalized linear models. Overall, 85.0% of the sample utilized health care services within four months. The mean total annual health care costs were EUR 1920 per person. PTSS severity was not associated with health care costs. The EQ-5D-5L index score and the EQ-VAS score was 0.82 and 73.6, respectively. For Syrian refugees with higher PTSS severity, the EQ-5D-5L index score was lower (−0.17; p < 0.001). The HCSU and the resulting health care costs of Syrian refugees with mild to moderate PTSS without current treatment are low and those with a higher PTSS severity had a lower HrQoL.Item Driving status and health-related quality of life among the oldest old: a population-based examination using data from the AgeCoDe–AgeQualiDe prospective cohort study(Springer Nature Switzerland AG, 2021-11) Hajek A; Brettschneider C; Lühmann D; van den Bussche H; Wiese B; Mamone S; Weyerer S; Werle J; Leve V; Fuchs A; Röhr S; Stein J; Bickel H; Mösch E; Heser K; Wagner M; Scherer M; Maier W; Riedel-Heller SG; Pentzek M; König H-HBackground It is almost unknown whether the driving status is associated with HRQOL among individuals in highest age. Aims Based on a multicenter prospective cohort study, the objective of this study was to examine whether the driving status is associated with health-related quality of life (HRQOL) among the oldest old in Germany. Methods Cross-sectional data from follow-up wave 9 (n = 544) were derived from the “Study on Needs, health service use, costs and health-related quality of life in a large sample of oldest-old primary care patients (85+)” (AgeQualiDe). Average age was 90.3 years (± 2.7; 86 to 101 years). The current driver status (no; yes) was used in our analysis. The EuroQoL EQ-5D questionnaire was used to assess HRQOL in this study. Results Regression analysis showed that being a current driver was associated with the absence of problems in ‘self-care’ [OR 0.41 (95%-CI 0.17 to 0.98)], and ‘usual activities’ [OR 0.48 (0.26 to 0.90)], whereas it was not significantly associated with problems in ‘pain/discomfort’ [OR 0.82 (0.47 to 1.45)] and ‘anxiety/depression’ [OR 0.71 (0.36 to 1.39)]. Being a current driver was marginally significantly associated with the absence of problems in ‘mobility’ [OR 0.60 (0.34 to 1.06)]. While being a current driver was not associated with the EQ-VAS in the main model, it was positively associated with the driving status (β = 5.00, p < .05) when functional impairment was removed from the main model. Discussion Our findings provide first evidence for an association between driving status and HRQOL among the oldest old. Conclusions Future longitudinal studies are required to evaluate a possible causal relationship between driving status and HRQOL in very old individuals.Item Depression, anxiety and quality of life in subjects with atopic eczema in a population-based cross-sectional study in Germany(John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology, 2020-04) Treudler R; Zeynalova S; Riedel-Heller SG; Zuelke AE; Roehr S; Hinz A; Glaesmer H; Kage P; Loeffler M; Simon JCBackground Atopic eczema (AE) may be associated with several mental health problems. In Germany, existing data from selected patient cohorts may lead to misestimation of the problem. Objectives We aimed to cross-sectionally determine associations of AE with depression, anxiety, quality of life (QoL) and social interactions in subjects from the population-based LIFE-Adult-Study. Methods Subjects underwent standardized interviews (medical history) and answered standardized questionnaires [Centre of Epidemiologic studies-Depression scale (CES-D), Generalized Anxiety Disorder (GAD-7), Lubben Social Network Scale (LSNS), Short Form Health Survey (SF-8)]. We compared data from subjects with AE with those from subjects with selected other chronic/disabling diseases (cardiovascular, diabetes, cancer) and adjusted for selected sociodemographic parameters. Multivariate binary logistic regression was used for categorical variables, linear regression for continuous variables. Results Out of 9104 adults included (57% female, median age 54 years), 372 (4.1%) had a history of AE. Compared with controls, subjects with AE showed higher scores for depressive symptoms (9.3% vs. 6.3%; P < 0.001) and anxiety (8.4% vs. 5.6%, P < 0.001). Odds ratio (OR) was 1.5 [CI 1.0; 2.3] (P = 0.031) for depression, which was comparable to OR in patients with a history of cancer (OR 1.6 [1–2.3], P = 0.001. OR for anxiety in AE was 1.5 [1.0; 2.2], P < 0.049, which was slightly higher than in diabetes mellitus (OR 1.2) and stroke (OR 1.4). Other than in diabetes and/or stroke, we did not find a significant association between AE and social isolation. QoL scores were lower in AE than in controls (mean 46.9 vs. 48.0, P < 0.001 for physical and 50.6 vs. 52.5, P < 0.001 for mental components). Conclusions Subjects with AE showed higher values for depression and anxiety as well as lower QoL scores compared to controls. With regard to depression, odds in AE and cancer were hardly different. Medical care of AE patients should therefore include mental health evaluation and treatment if indicated.