Experiences of psychological interventions in neurodegenerative diseases: a systematic review and thematic synthesis

Pinto, Cathryn; Geraghty, Adam W A; McLoughlin, Charlotte; Pagnini, Francesco; Yardley, Lucy; Dennison, Laura

doi:10.1080/17437199.2022.2073901

Cited by 9 publications

(5 citation statements)

References 85 publications

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“…Overall, most participants saw the development of direct psychological pathways-providing free (or basic fee) tailored psychological support to both patients and their family members across all stages of the disease-as the right way forward. All these elements appeared to be largely in line with evidence from other neurodegenerative conditions [54], as well as with some of the suggestions outlined by HD guidelines and manifestos published recently in the UK, which also highlighted the need for exploring national psychological provision for HD in other countries [25,26,31].…”

Section: Summary Of Main Findingssupporting

confidence: 70%

“I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy

Zarotti,

D’Alessio,

Scocchia

et al. 2024

NeuroSci

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People with Huntington’s disease (HD) often experience psychological difficulties linked with disease progression and the adjustment to living with a chronic condition, which are also frequently shared by their informal caregivers (e.g., partners). Although limited, the current literature on psychological care for people with HD shows that interventions have the potential to drive improvements in mental health and quality of life. However, the experience of accessing and receiving psychological support for HD remains unclear across several countries. This study adopted a qualitative design to explore the experiences of psychological support for HD from the perspectives of patients and caregivers living in Italy. Semi-structured interviews were carried out with 14 participants—7 patients with early-manifest HD and 7 partners acting as their caregivers. The resulting data were analysed through thematic analysis. Four overarching themes were identified: (1) the availability of psychological support for HD, (2) barriers to accessing psychological support, (3) enablers to accessing psychological support, and (4) the future development of public psychological provision for HD. In Italy, patients and caregivers perceive public psychological support for HD as unavailable or inadequate, and private therapy is often seen as unaffordable. Barriers such as distrust in public healthcare and preconceptions about therapy may limit access, while advice from HD organisations and seeking therapy for other reasons may act as enablers. A strong emphasis is put on the need for accessible public psychological support throughout all the stages of the condition.

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Section: Summary Of Main Findingssupporting

confidence: 70%

“I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy

Zarotti,

D’Alessio,

Scocchia

et al. 2024

NeuroSci

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“…Society is aging, which leads to a greater presence of chronic illnesses, dependency, and personal care for those who suffer from them. Recent studies suggest that progressive worsening of symptoms, decreasing functional status, experience of multiple losses as the disease worsens, increasing disability, and changes in social roles may pose difficulties in the physical and psychological management of these patients [40]. The outbreak of the COVID pandemic has revealed some shortcomings affecting health and social services, which are exacerbated in rural areas.…”

Section: Discussionmentioning

confidence: 99%

Epidemiological Impact of Neurodegenerative Diseases in the Rural Spanish-Portuguese Cross-Border Region

Alonso-Sardón,

Paulino,

Fernandes

et al. 2023

Neurodegener Dis

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Introduction: Epidemiological data indicate that neurodegenerative diseases show a high prevalence with a progressive increasing trend, especially in aging populations, as is the case in rural areas. The objective of this study was to assess the quantitative impact of neurodegenerative diseases in rural areas of the Spanish-Portuguese border region and to describe the epidemiological profile of the most prevalent disorders in one of the most depopulated and aged regions of Europe. Methods: A cross-sectional descriptive study was designed to estimate the prevalence of subjects diagnosed with the most common neurodegenerative disorders: dementia (Alzheimer's disease & other dementias), Parkinson's disease & Parkinsonism and Multiple sclerosis in the Spanish-Portuguese cross-border border region in 2020. It includes Bragança and Guarda Districts (Portugal), and Salamanca (Castilla y León, Spain). Results: Neurodegenerative diseases accounted for 1.85% in the Spanish-Portuguese cross-border region in 2020; a total of 5,819 records: 987 (prevalence, 2.51%) were reported in Salamanca (Spain); 2,332 (prevalence, 1.87%) in Bragança; and 2,500 (prevalence, 1.66%) in Guarda. Female population suffered from them in higher proportion (2.35% vs. 1.32%). Dementia represented 1.19% (3,744), Parkinson's disease & Parkinsonism 0.58% (1,823) and Multiple sclerosis 0.08% (252). These disorders impacted older age groups. In the rural border region of Spain, 1 out of 4 cases were institutionalized. Conclusion: The findings reveal the health impact of neurodegenerative diseases in the Spanish-Portuguese cross-border region. The epidemiological data emphasizes the region's circumstances and highlights research priorities. Intervention strategies must be implemented in the region to ensure quality healthcare in rural areas.

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“…The activities or suggestions within the intervention or app also need to consider this variability in Parkinson's symptoms and levels of ability. The need for digital psychological interventions to be sensitive to physical symptoms and accessibility has been previously highlighted in other similar neurodegenerative conditions (19)(20)(21).…”

Section: Introductionmentioning

confidence: 99%

Acceptability and feasibility randomized controlled trial of a digital psychological support intervention for people with Parkinson’s disease: trial protocol

Pinto,

Brown,

Hurt

et al. 2024

Preprint

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Background. People with Parkinson’s disease can experience psychological distress and have difficulties accessing face-to-face psychological support due to symptom burden and limited availability of psychological services. Digital options for psychological support can bridge this gap. We have developed an app based on Acceptance and commitment therapy (ACT) to support people with Parkinson’s to improve psychological wellbeing. Aim. To assess the acceptability of the app and the feasibility of conducting a randomised controlled trial (RCT) to evaluate the effectiveness of using the app to improve wellbeing for people with Parkinson’s. Methods. We will conduct a parallel-group randomised controlled feasibility trial comparing a digital app based on ACT (intervention group) to usual care (waitlist control group). We will recruit 60 people with Parkinson’s, 40 to the intervention group and 20 to the control group. Primary feasibility outcomes include recruitment and retention rate, intervention engagement and satisfaction. Secondary outcomes include measures of clinical effectiveness (anxiety and depression), quality of life, and cost-effectiveness. Interviews will be conducted to assess acceptability of the app. Primary feasibility outcome data will be analysed descriptively and compared against pre-defined feasibility criteria. Secondary outcomes will be analysed based on an intention-to-treat principle and a cost-consequence analysis will be used to estimate cost-effectiveness. Interviews will be analysed using a deductive thematic analysis based on the Theoretical Framework of Acceptability. Discussion. This trial will provide data on the feasibility of conducting a full-scale RCT of the effectiveness and cost-effectiveness of the app to improve psychological wellbeing for people with Parkinson’s disease. Trial registration: The trial has been registered in the ISRCTN registry (65177345 https://doi.org/10.1186/ISRCTN65177345)

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Experiences of psychological interventions in neurodegenerative diseases: a systematic review and thematic synthesis

Cited by 9 publications

References 85 publications

“I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy

“I Wouldn’t Even Know What to Ask for”: Patients’ and Caregivers’ Experiences of Psychological Support for Huntington’s Disease in Italy

Epidemiological Impact of Neurodegenerative Diseases in the Rural Spanish-Portuguese Cross-Border Region

Acceptability and feasibility randomized controlled trial of a digital psychological support intervention for people with Parkinson’s disease: trial protocol

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