The health and quality of life of Thalidomide survivors as they age - Evidence from a UK survey

BACKGROUND: In the late 1950s and early 1960s the drug Thalidomide was marketed across the world as a non-addictive tranquilizer. Despite being given to pregnant women as a safe treatment for morning sickness, Thalidomide caused serious damage to the unborn child. Much has been written about the drug and the birth defects it caused but evidence about the health of Thalidomide survivors as they age is limited. AIM: The aim of this study was to: explore the health and wellbeing UK Thalidomide survivors; document the health problems experienced by them as they reach their mid-50s; and examine the impacts on their health-related quality of life and employment. METHODS: A health and wellbeing survey of 351 UK Thalidomide survivors, which gathered information about home and employment circumstances, recent health problems, and health related quality of life (using SF12 Health Survey). Overall analysis focused on descriptive statistics; the association between respondents' health related quality of life and original impairment was examined using Pearson Correlation; and a three step Hierarchical Regression was used to explore the influence of five factors which narrative responses suggested might be important. RESULTS: As Thalidomide survivors reach their mid-50's they are experiencing a wide range of secondary health problems, in particular musculoskeletal problems, and depression and anxiety, with multimorbidity a growing issue. These health problems are having a negative impact on their employment (two fifths are unable to work) and their physical health related quality of life, which is significantly poorer than the general population. DISCUSSION: Having lived relatively independent lives, many Thalidomide survivors are now having to adjust to growing disability. The study provides further evidence of the accumulative impact of disability over peoples' lifetimes and highlights the value of a life course perspective in understanding the complex experience of growing older with a disability

The influence of early familial adversity on adolescent risk behaviours and mental health: stability and transition in family adversity profiles in a cohort sample : Stability and transition in family adversity profiles in a cohort sample

Although familial adversity is associated with poorer outcomes in childhood and adulthood, little research has looked at the influence of stability or transition between distinct familial adversity subgroups or the impact in adolescence. Using data from the 9-month, 3-, 5-, and 14-year time waves of the Millennium Cohort Study (n > 18,000), we used latent class analysis to identify distinct classes of early familial adversity (marital instability/conflict, "suboptimal" parenting, economic disadvantage, and parental mental health problems) and the impact of these adversity classes on adolescent (a) mental health (including self-harm), (b) risk taking, (c) criminality, and (d) victimization. Four profiles were identified largely differing on economic hardship, family composition, and parental conflict. Across the first three time points, 72% of the sample remained stable, with the remainder transitioning between classes. Adolescents in the higher risk groups (particularly categorized by economic hardship or high parental conflict) had poorer outcomes in adolescence. Transitioning to a higher adversity group at any time in the first 5 years was associated with poorer outcomes but was particularly pronounced when the transition occurred when the child was under 3 years. These findings demonstrate the broad consequences of early familial adversity and the need for targeted early support for at-risk families

Digital health literacy and digital engagement for people with severe mental ill health across the course of the COVID-19 pandemic in England

Background An unprecedented acceleration in digital mental health services happened during the COVID-19 pandemic. However, people with severe mental ill health (SMI) might be at risk of digital exclusion, partly because of a lack of digital skills, such as digital health literacy. The study seeks to examine how the use of the Internet has changed during the pandemic for people with SMI, and explore digital exclusion, symptomatic/health related barriers to internet engagement, and digital health literacy. Methods Over the period from July 2020 to February 2022, n = 177 people with an SMI diagnosis (psychosis-spectrum disorder or bipolar affective disorder) in England completed three surveys providing sociodemographic information and answering questions regarding their health, use of the Internet, and digital health literacy. Results 42.5% of participants reported experiences of digital exclusion. Cochrane-Q analysis showed that there was significantly more use of the Internet at the last two assessments (80.8%, and 82.2%) compared to that at the beginning of the pandemic (65.8%; ps < 0.001). Although 34.2% of participants reported that their digital skills had improved during the pandemic, 54.4% still rated their Internet knowledge as being fair or worse than fair. Concentration difficulties (62.6%) and depression (56.1%) were among the most frequently reported symptomatic barriers to use the Internet. The sample was found to have generally moderate levels of digital health literacy (M = 26.0, SD = 9.6). Multiple regression analysis showed that higher literacy was associated with having outstanding/good self-reported knowledge of the Internet (ES = 6.00; 95% CI: 3.18–8.82; p < .001), a diagnosis of bipolar disorder (compared to psychosis spectrum disorder – ES = 5.14; 95% CI: 2.47–7.81; p < .001), and being female (ES = 3.18; 95% CI: 0.59–5.76; p = .016). Conclusions These findings underline the need for training and support among people with SMI to increase digital skills, facilitate digital engagement, and reduce digital engagement, as well as offering non-digital engagement options to service users with SMI

Use of the Internet and digital devices among people with severe mental ill health during the COVID-19 pandemic restrictions

Background: Restrictions due to the COVID-19 pandemic have led to everyday reliance on digitalisation of life, including access to health care services. People with severe mental ill health (SMI—e.g., bipolar or psychosis spectrum disorders) are at greater risk for digital exclusion and it is unknown to what extent they adapted to online service delivery. This study explored use of the Internet and digital devices during the pandemic restrictions and its association with physical and mental health changes.Methods: Three hundred sixty seven adults with an SMI diagnosis completed a survey (online or offline) and provided information on access to Internet connexion and devices, internet knowledge, online activities, and barriers to using the Internet. They also self-reported changes in mental and physical health since the beginning of the pandemic restrictions.Results: During the pandemic restrictions 61.6% were limited or non-users of the Internet. The majority had access to the Internet and digital devices but around half reported knowledge deficits. Most common activities were accessing information and entertainment (88.9%), staying in touch with friends and families (84.8%), and purchasing goods (other than food) (84.3%). Most common barriers were finding the Internet “not interesting” (28.3%) or “too difficult” (27.9%), as well as “security concerns” (22.1–24.3%). Using the Internet “a lot” (vs. “just a bit or not at all”) during the pandemic was associated with younger age (18–30: Adj ORs 4.76; 31–45: 6.39; Ps &lt; 0.001; vs. 66+), having a diagnosis of bipolar disorder (compared to psychosis; Adj OR = 3.88, P &lt; 0.001), or reporting a decline in mental health (compared to no decline; Adj OR = 1.92, P = 0.01).Conclusion: Most people with SMI were limited or non-users of the Internet during the pandemic, which seems to be mainly attributable to lack of interest and skills, rather than lack of devices or connectivity. Older adults with psychosis should be the focus of interventions to support digital engagement in people with SMI

Exploring Access to Mental Health and Primary Care Services for People With Severe Mental Illness During the COVID-19 Restrictions

Aims: To explore: how satisfied people with severe mental illness (SMI) are with the support received during the pandemic; understand any difficulties encountered when accessing both mental health and primary care services; consider ways to mitigate these difficulties; and assess the perceived need for future support from mental health services. Materials and Methods: A representative sample was drawn from a large transdiagnostic clinical cohort of people with SMI, which was recruited between April 2016 and March 2020. The sample was re-surveyed a few months after the beginning of the restrictions. Descriptive frequency statistics were used to analyze the quantitative data. The free text responses were analyzed thematically. Results: 367 participants responded to the survey. Two thirds were receiving support from mental health services with the rest supported in primary care or self-managing. A quarter thought they would need more mental health support in the coming year. Half had needed to used community mental health services during the pandemic and the majority had been able to get support. A minority reported that their mental health had deteriorated but they had either not got the supported they wanted or had not sought help. The biggest service change was the reduction in face-to-face appointments and increasing use of phone and video call support. Nearly half of those using mental health services found this change acceptable or even preferred it. However, acceptability was influenced by several factors, and participants were more likely to report that they had received all the support they needed, when seen in person. Discussion: Although most participants were satisfied with the mental health support they had received, a minority were not. This, couple with findings on future need for mental health support has implications for post pandemic demand on services. Remote care has brought benefits but also risks that it could increase inequalities in access to services

Loneliness among people with severe mental illness during the COVID-19 pandemic : Results from a linked UK population cohort study

AIM/GOAL/PURPOSE: Population surveys underrepresent people with severe mental ill health. This paper aims to use multiple regression analyses to explore perceived social support, loneliness and factor associations from self-report survey data collected during the Covid-19 pandemic in a sample of individuals with severe mental ill health. DESIGN/METHODOLOGY/APPROACH: We sampled an already existing cohort of people with severe mental ill health. Researchers contacted participants by phone or by post to invite them to take part in a survey about how the pandemic restrictions had impacted health, Covid-19 experiences, perceived social support, employment and loneliness. Loneliness was measured by the three item UCLA loneliness scale. FINDINGS: In the pandemic sub-cohort, 367 adults with a severe mental ill health diagnosis completed a remote survey. 29-34% of participants reported being lonely. Loneliness was associated with being younger in age (adjusted OR = -.98, p = .02), living alone (adjusted OR = 2.04, p = .01), high levels of social and economic deprivation (adjusted OR = 2.49, p = .04), and lower perceived social support (B = -5.86, p < .001). Living alone was associated with lower perceived social support. Being lonely was associated with a self-reported deterioration in mental health during the pandemic (adjusted OR = 3.46, 95%CI 2.03-5.91). PRACTICAL IMPLICATIONS: Intervention strategies to tackle loneliness in the severe mental ill health population are needed. Further research is needed to follow-up the severe mental ill health population after pandemic restrictions are lifted to understand perceived social support and loneliness trends. ORIGINALITY: Loneliness was a substantial problem for the severe mental ill health population before the Covid-19 pandemic but there is limited evidence to understand perceived social support and loneliness trends during the pandemic

A Year Into the Pandemic : The Diversity of Experience Amongst People With Severe Mental Ill Health

Background: The COVID-19 pandemic has amplified pre-existing health inequalities and people with severe mental ill health (SMI) are one of the groups at greatest risk. In this study, we explored the effects of the pandemic and pandemic restrictions on people with SMI during the first year of the pandemic. Methods: We conducted a longitudinal study in a sample of people with SMI. The inception survey was carried out between July and December 2020. Participants were then re-surveyed between January and March 2021. People were contacted by telephone and invited to take part in the study over the phone, online or by postal questionnaire. Across both waves we asked participants about their physical and mental health, health risk behaviors, well-being, loneliness, and employment status. Results: Three hundred and sixty-seven people with SMI completed the inception survey and 249 people completed the follow up. Whilst some people reported no change in their physical (77, 31%) or mental health (60, 24%) over the course of the pandemic 53 (21%) reported a continuing decline in physical health and 52 (21%) reported a continuing decline in mental health. Participants who maintained a daily routine or reported no decline in physical health were found to be associated with no deterioration in mental health (Daily routine OR 2.27, 95% CI 1.11-4.64; no reported physical health decline OR 0.54, 95% CI 0.17-0.70). Participants were less likely to be occupationally active in the first phase of the pandemic compared to before the pandemic and in the second phase of the pandemic. However, there was no one single experience of people with SMI and similar to studies in the general populations a range of different scenarios was experienced. Conclusions: We observed a series of factors that might amplify pre-existing health inequalities. Health systems should be mindful of this, and should redouble efforts to set in place changes to practice and policy, which can mitigate these inequalities. Examples might include; raising awareness of the importance of ensuring that people with SMI receive an annual physical health check and supporting people to maintain a daily routine

Health risk behaviours among people with severe mental ill health during the COVID-19 pandemic: Analysis of linked cohort data

BACKGROUND: People with severe mental ill health (SMI) experience a mortality gap of 15-20 years. COVID-19 has amplified population health inequalities, and there is concern that people with SMI will be disproportionately affected. Understanding how health risk behaviours have changed during the pandemic is important when developing strategies to mitigate future increases in health inequalities. METHODS: We sampled from an existing cohort of people with SMI. Researchers contacted participants by phone or post to invite them to take part in a survey about how the pandemic had affected them. We asked people about their health risk behaviours and how these had changed during the pandemic. We created an index of changed behaviours, comprising dietary factors, smoking, lack of exercise, and drinking patterns. By creating data linkages, we compared their responses during pandemic restrictions to responses they gave prior to the pandemic. OUTCOMES: 367 people provided health risk data. The mean age of the participants was 50.5 (range = 20 to 86, SD ± 15.69) with 51.0% male and 77.4% white British. 47.5% of participants reported taking less physical activity during the pandemic and of those who smoke 54.5% reported smoking more heavily. Self-reported deterioration in physical health was significantly associated with an increase in health risk behaviours (adjusted OR for physical health 1.59, 95%CI 1.22-2.07; adjusted OR for Age 0.99, 95%CI 0.98-1.00). INTERPRETATION: COVID-19 is likely to amplify health inequalities for people with SMI. Health services should target health risk behaviours for people with SMI to mitigate the immediate and long lasting impacts of the COVID-19 pandemic