The benefits of psychoeducation for improving sleep quality

With large numbers of students reporting difficulties with sleep, Claire Gregor, Luci Wiggs and Aileen Ho set out to explore whether psychoeducational input on sleep hygiene might help them achieve improved quality of rest. Their research produced some interesting results

The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life

The Huntington's disease health-related quality of life questionnaire: a disease-specific measure of health-related quality of life. Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease-specific patient-reported health-related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi-structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data-driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient-derived scales provide promising patient-reported outcome measures for HD

Development and Validation of an Attitudinal-Profiling Tool for Patients With Asthma

This study was supported and funded by Mundipharma Pte Ltd. Online survey and statistical analysis were performed by Pei-Li Teh, Rachel Howard, Tsin-Li Chua and Jie Sun of Research Partnership Pte Ltd. Medical writing support was provided by Sen-Kwan Tay of Research2Trials Clinical Solutions Pte Ltd. The authors received honoraria from Mundipharma for their participation in the REALISE Asia Working Group meetings and discussions. Prof Price has Board membership with Mundipharma; and had received consultancy and speaker fees, grants and unrestricted funding support from Mundipharma; and payment for manuscript preparation and travel/accommodations/meeting expenses from Mundipharma. Profs Liam and David-Wang are members of the Asia-Pacific Advisory Board of Mundipharma. Profs Cho and David-Wang had received speaker fees from Mundipharma in the past. Dr Neira was an employee of Mundipharma Pte Ltd, Singapore. Ms Teh is an employee of Research Partnership Pte Ltd which conducted the REALISE Asia survey for Mundipharma. Prof Cho is a member of the Editorial Board of Allergy, Asthma & Immunology.Peer reviewedPublisher PD

The COVID-19 pandemic experience in multiple sclerosis: the good, the bad and the neutral

Introduction: While the current COVID-19 pandemic has affected the lives of many, there is a paucity of information on the impact on people with Multiple Sclerosis (MS). This study sought to gain insight into the impact of the current situation on people with MS and the factors that influence this. Methods: 324 MS patients participated in this online cross-sectional survey during the COVID-19 lockdown period. A mixed methods design was used with quantitative information collected on MS related factors as well as COVID-19 impact and an open ended, qualitative response looking for reasons behind the self-reported COVID-19 impact. Results: We found that 48% of the participants reported that COVID-19 had a neutral impact on their lives and 16% reported a positive impact. However, 36% reported a negative impact, and had greater levels MS and non-MS related worries, and higher levels of bother related to psychological and cognitive symptoms and fatigue than the groups reporting neutral or positive impact. Significant predictors of this adversely affected group were age, type of MS and presence of psychological symptoms. Antidepressant medication use, time since diagnosis, gender, location, living arrangements or employment status did not predict impact. Open ended responses explaining personal COVID-19 impact indicate that coping strategies may contribute to these findings. In particular, active, problem-focused approaches were reported by the majority of people who reported a positive impact, as well as a third of those who reported a neutral impact. Conclusion: These findings suggest that younger people, those with progressive types of MS, and those with psychological symptoms are particularly vulnerable to the negative effects of a COVID-19 pandemic induced lockdown. Coping strategies provide further insight into these findings with those reporting active problem focused approaches seemingly faring better than those who do not state any coping strategies. These results also have implications for understanding other like neurological conditions that share many similarities with MS and how best to direct support

Supporting sexual functioning and satisfaction during rehabilitation after spinal cord injury: barriers and facilitators identified by healthcare professionals

Spinal cord injury can affect sexual functioning and sa- tisfaction. However, support for sex is often overlooked in spinal injury rehabilitation. Healthcare professionals can feel uncomfortable, and lack confidence and training to address this with patients. There is a need to gain insight into what enables healthcare professionals to deliver better support for sexual wellbeing, and what limits them. Knowing what helps or hinders professio- nals in working with sexual issues after spinal cord injury would enable growth and development in tailored reha- bilitation services. The aim of this study was to identify how healthcare professionals see the challenges facing sexual rehabilitation, focusing on issues that may affect the sexual functioning and satisfaction of patients. The results showed that healthcare professionals are concer- ned about the absence of professional support for sexu- ality in their rehabilitation services, they felt embarras- sed when addressing sex, they felt they lacked specialist training, and had limited resources and materials to work from. Programmes are needed that provide edu- cation and psychological support for people with spinal cord injury who want to maintain sexual engagement and, critically, this requires improvements in knowledge and skills for the healthcare professionals who are provi- ding spinal cord injury rehabilitation

Meaningful and measurable health domains in Huntington’s: large-scale validation of the Huntington’s disease health-related quality of life questionnaire (HDQoL) across severity stages

Objectives: While health-related quality of life is key for patients with long-term neurodegenerative conditions, measuring this is less straightforward and complex in Huntington’s disease. This study aimed to refine and validate a fully patient-derived instrument, the Huntington’s Disease health-related Quality of Life questionnaire (HDQoL), and to elucidate health domains that are meaningful to patients’ lived experience. Methods: Five-hundred and forty-one participants, from pre-manifest to end-stage disease completed the HDQoL, together with generic quality of life measures, and in-person motor, cognitive and behavioural assessments. The psychometric properties of the HDQoL were examined using factor analysis and Rasch analysis. Results: Four HDQoL domains emerged reflecting the classical triad of HD features - they were Physical-Functional, Cognitive, and two different behavioural aspects i.e. Mood-Self domain, as well as a distinct Worries domain. These domains clarify the behavioural sequelae as experienced by patients, and all showed good to excellent internal consistency. Known groups analyses illustrated significant and graded changes in clinical assesments and corresponding HDQoL domains across severity levels. Convergent and discriminant validity was demonstrated by the expected pattern of correlations between specific HDQoL domains and corresponding domain-relevant clinical assesments as well as patient-reported measures. The data demonstrate robust support for the refined HDQoL across disease stages. Conclusions: The HDQoL with its two distinct behavioural domains of Mood-Self and of Worries, as well as a Physical-Functional and a Cognitive domain, is a relevant, reliable and valid patient-derived instrument to measure the impact of Huntington’s disease across all severity stages

Time for a new language for asthma control : Results from REALISE Asia

Acknowledgments: This study was supported and funded by Mundipharma Pte Ltd. Online survey and statistical analysis were performed by Pei-Li Teh, Rachel Howard, Tsin-Li Chua, and Jie Sun of Research Partnership Pte Ltd. Medical writing support was provided by Sen-Kwan Tay of Research2Trials Clinical Solutions Pte Ltd.Peer reviewedPublisher PD

Association between Post-Hospital Clinic and Telephone Follow-up Provider Visits with 30-Day Readmission Risk in an Integrated Health System

BACKGROUND: Follow-up visits with clinic providers after hospital discharge may not be feasible for some patients due to functional limitations, transportation challenges, need for physical distancing, or fear of exposure especially during the current COVID-19 pandemic. METHODS: The aim of the study was to determine the effects of post-hospital clinic (POSH) and telephone (TPOSH) follow-up provider visits versus no visit on 30-day readmission. We used a retrospective cohort design based on data from 1/1/2017 to 12/31/2019 on adult patients (n = 213,513) discharged home from 15 Kaiser Permanente Southern California hospitals. Completion of POSH or TPOSH provider visits within 7 days of discharge was the exposure and all-cause 30-day inpatient and observation stay readmission was the primary outcome. We used matching weights to balance the groups and Fine-Gray subdistribution hazard model to assess for readmission risk. RESULTS: Unweighted all-cause 30-day readmission rate was highest for patients who completed a TPOSH (17.3%) followed by no visit (14.2%), non-POSH (evaluation and management visits that were not focused on the hospitalization: 13.6%) and POSH (12.6%) visits. The matching weighted models showed that the effects of POSH and TPOSH visits varied across patient subgroups. For high risk (LACE 11+) medicine patients, both POSH (HR: 0.77, 95% CI: 0.71, 0.85, P \u3c .001) and TPOSH (HR: 0.91, 95% CI: 0.83, 0.99, P = .03) were associated with 23 and 9% lower risk of 30-day readmission, respectively, compared to no visit. For medium to low risk medicine patients (LACE\u3c 11) and all surgical patients regardless of LACE score or age, there were no significant associations for either visit type with risk of 30-day readmission. CONCLUSIONS: Post-hospital telephone follow-up provider visits had only modest effects on 30-day readmission in high-risk medicine patients compared to clinic visits. It remains to be determined if greater use and comfort with virtual visits by providers and patients as a result of the pandemic might improve the effectiveness of these encounters

Sexual function and sexual satisfaction following spinal cord injury: an interpretative phenomenological analysis of partner experiences

Purpose This study explored how partners/spouses of people with Spinal Cord Injury (SCI) experienced intimacy, sexual function, and sexual satisfaction post-SCI. Materials and methods Qualitative, semi-structured interviews were conducted with the partners/spouses of people with SCI living in the community in the United Kingdom. Twelve participants (7 females; 5 males) were recruited using purposive sampling. A nine-item semi-structured interview design was used. Interviews were transcribed verbatim and analysed via Interpretative Phenomenological Analysis (IPA). Results Three superordinate themes were demonstrated: (1) Stolen sex through unpreparedness; (2) Redefining sex; and (3) Compromised commitment. Partners struggled to come to terms with the shock of radically altered post-SCI sexual relationships, questioning how their changed sexual relationship and sexual identity conflicted with caring requirements. To minimise post-SCI relationship changes, some partners engaged in strategies to protect against, distract from and avoid sexual intimacy, whereas others were able to retain adapted pre-injury patterns of intimate behaviour. Conclusion Compromised sexual function and satisfaction significantly disrupt relationship dynamics post-SCI, initiate voluntary celibacy, and limit the perceived viability of continued sexual intimacy. Specialist partner-support provisions are urgently needed, recognising that partner support needs are not restricted to the inpatient rehabilitation phase but importantly extend long past discharge into the community. Implications for Rehabilitation Sexual function and satisfaction are highly challenging areas for partners post-spinal cord injury (SCI). Support and education for the partner must be incorporated into SCI rehabilitation to help with both adjustment and acceptance to changes in sexual functioning post-SCI. Partner contributions to and experiences of sexual function and satisfaction should be given more value, as these aid in the sustainability of healthy sexual relationships and psychological wellbeing following SCI