Evaluation of a palliative and hospice care telephone hotline for patients severely affected by multiple sclerosis and their caregivers

Strupp, Julia; Groebe, Bernadette; Knies, Andrea K.; M, Mai; Voltz, Raymond; Golla, Heidrun

doi:10.1111/ene.13462

Cited by 11 publications

(9 citation statements)

References 44 publications

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“…The general improvement of emotional well-being and decreased severity of depression was shown in several studies. 20,22,23,28 Remote-cognitive behavioural therapy was particularly helpful in allowing access to a specialized therapy to pwMS while reducing the time needed to participate in face-to-face traditional cognitive behavioural therapy. 43,44 These studies illustrate that telemedicine can be a useful means to access mental health and neuropsychological care.…”

Section: Discussionmentioning

confidence: 99%

“…[19][20][21][22][23][24][25][26][27][28] Web-based systems and telephone hotlines were shown to provide patient access to their providers during non-clinic hours from the convenience of their home. [19][20][21][22][23][24][25] Patients could utilize these systems to review results, order prescriptions and learn new concepts about MS. Studies which compared the telemedicine management of pwMS with traditional in-person management were mixed. Some telemedicine studies showed a significant reduction in pressure ulcers 23 and depression.…”

Section: General Multiple Sclerosis Telemedicinementioning

confidence: 99%

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Telemedicine and multiple sclerosis: A comprehensive literature review

et al. 2019

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Introduction Patients with multiple sclerosis (pwMS) face barriers accessing specialty care for evaluation and treatment. Telemedicine, the practice of clinical care at a distance with the aid of technology, may be a potential bridge to close the access gap for pwMS separated by distance or disability. The objective of this review was to investigate the types of telemedicine being utilized and overall outcomes for pwMS and their providers. Methods A Boolean search of the medical literature was conducted between January 2000 and January 31, 2018. PubMed, EMBASE, PsycINFO and the Cochrane databases, were used to identify all relevant citations. Two reviewers independently appraised the articles for meeting study criteria and for study quality using the CASP system. Financial costs of the telemedicine applications were assessed. Results A total of 28 studies involving 3252 participants met criteria for inclusion. Telemedicine interventions were classified, and outcomes were assessed systematically by the following categories: general MS care; rehabilitation and exercise; and neuropsychology/mental health. Studies showed a range of outcomes with variable quality. Overall, remote clinical examinations, long-term telemedicine management interventions and telerehabilitation were shown to be beneficial, cost-effective and satisfactory for patients and providers. Discussion Telemedicine is a viable platform for delivering specialty MS care. Remote neurological assessments and several forms of therapy have been shown to be technically feasible. Optimal implementation and barriers to the use of telemedicine in the current healthcare system should be explored.

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Section: Discussionmentioning

confidence: 99%

Section: General Multiple Sclerosis Telemedicinementioning

confidence: 99%

Telemedicine and multiple sclerosis: A comprehensive literature review

et al. 2019

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“…25,26 A 24/7 hotline access to the palliative care team Applying creative interventions during a crisis situation are helpful and beneficial in reducing the emotional distress and they facilitate a supportive transition throughout the grieving process for patients as well as the bereaved families. 27,28 Launching a 24/7 hotline access to the palliative care team was one of the interventions implemented during the COVID-19 crisis in the health system of Mount Sinai in New York City. The help line provides two support services: teleconsultation (physician-to-physician support) and telemedicine (palliative medicine-tofamily).…”

Section: Tele-palliative Medicinementioning

confidence: 99%

Integrating Palliative Care Services in Pandemics and Emergencies Preparedness and Response Plans

Saadi

2022

Sultan Qaboos Univ Med J

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“…depressive disorders. 15 Laypeople providing uncompensated care for adults with advanced MS become psychologically burdened themselves, 16 often experiencing mounting levels of fatigue, depression, and anger that can undermine empathy for the person with MS. 17 Serious cognitive impairment in people with MS, for example, tends to increase their caregivers' stress more than physical disability does. 18 To better understand these complex issues, our research team at the University of California, Irvine (UCI), Program in Geriatrics undertook the first extensive study of caregiver mistreatment of American adults with MS.…”

Section: O N L I N E F I R S Tmentioning

confidence: 99%

Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing Abuse and Neglect of Adults With Multiple Sclerosis

Morrison¹,

Sorkin²,

Mosqueda³

et al. 2021

International Journal of MS Care

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Background: Approximately 30% of people with multiple sclerosis (MS) require caregiving, with unknown prevalence of abuse and neglect. To explore these issues, we created the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS). The objective was to develop, validate, and field-test a self-report questionnaire for screening people with MS for mistreatment. Methods: We developed the STRESS-MS questionnaire and administered it to 102 adults with advanced MS-related disability and 97 primary informal caregivers, correlating responses with direct observation of mistreatment, conducting an item analysis, and evaluating validity using a Longitudinal, Expert, All Data (LEAD) panel. Results: Most STRESS-MS subscales correlated highly with criterion-standard LEAD panel evaluations of mistreatment, with strong concurrent and discriminant validity. Nearly 53% of participants with MS reported experiencing psychological abuse; 9.8%, financial exploitation; 6.9%, physical abuse; 4.9%, neglect; and 3.9%, sexual abuse. Protective factors for people with MS included social support and older age; risk factors included depression and aggressiveness. The greatest risk factor was an informal caregiver who spent 20 or more hours per week caring for the person with MS. Conclusions: The STRESS-MS questionnaire is reasonably reliable and valid for detecting caregiver mistreatment in adults with MS. Although most informal caregivers are not abusive, this study highlights an underrecognized need to detect and prevent abuse and neglect of people with MS.

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Evaluation of a palliative and hospice care telephone hotline for patients severely affected by multiple sclerosis and their caregivers

Cited by 11 publications

References 44 publications

Telemedicine and multiple sclerosis: A comprehensive literature review

Telemedicine and multiple sclerosis: A comprehensive literature review

Integrating Palliative Care Services in Pandemics and Emergencies Preparedness and Response Plans

Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing Abuse and Neglect of Adults With Multiple Sclerosis

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