The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study

Abstract Background It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. Methods The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Results Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0 .001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. Conclusion The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.

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Telemedically Augmented Palliative Care

Advances in Healthcare Information Systems and Administration - Achieving Effective Integrated E-Care Beyond the Silos ◽

10.4018/978-1-4666-6138-7.ch009 ◽

2014 ◽

pp. 185-201

Author(s):

Romina Nemecek ◽

Patrick Huber ◽

Sophie Schur ◽

Eva Masel ◽

Stefanie Porkert ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Family Caregivers ◽

Hospital Admissions ◽

Intervention Group ◽

Symptom Burden ◽

Well Being ◽

Control Group ◽

User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

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Telemedically Augmented Palliative Care

Healthcare Ethics and Training ◽

10.4018/978-1-5225-2237-9.ch058 ◽

2017 ◽

pp. 1228-1246

Author(s):

Romina Nemecek ◽

Patrick Huber ◽

Sophie Schur ◽

Eva Masel ◽

Stefanie Porkert ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Family Caregivers ◽

Hospital Admissions ◽

Intervention Group ◽

Symptom Burden ◽

Well Being ◽

Control Group ◽

User Friendly

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Telemedically Augmented Palliative Care

E-Health and Telemedicine ◽

10.4018/978-1-4666-8756-1.ch010 ◽

2016 ◽

pp. 183-199

Author(s):

Romina Nemecek ◽

Patrick Huber ◽

Sophie Schur ◽

Eva Masel ◽

Stefanie Porkert ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Family Caregivers ◽

Hospital Admissions ◽

Intervention Group ◽

Symptom Burden ◽

Well Being ◽

Control Group ◽

User Friendly

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Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

Innovation in Aging ◽

10.1093/geroni/igaa057.500 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 153-154

Author(s):

Afeez Hazzan

Keyword(s):

Quality Of Life ◽

Quality Of Care ◽

Older People ◽

Family Caregivers ◽

Family Caregiver ◽

Well Being ◽

The United States ◽

People With Dementia ◽

The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

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Physical Activity and Sport for Acquired Brain Injury (PASABI): A Non-Randomized Controlled Trial

Medicina ◽

10.3390/medicina57020122 ◽

2021 ◽

Vol 57 (2) ◽

pp. 122

Author(s):

Marta Pérez-Rodríguez ◽

Saleky García-Gómez ◽

Javier Coterón ◽

Juan José García-Hernández ◽

Javier Pérez-Tejero

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Brain Injury ◽

Functional Capacity ◽

Intervention Group ◽

Chronic Phase ◽

Acquired Brain Injury ◽

Control Group ◽

Wide Range

Background and objectives: Acquired brain injury (ABI) is the first cause of disability and physical activity (PA) is a key element in functional recovery and health-related quality of life (HRQoL) during the subacute and chronic phases. However, it is necessary to develop PA programs that respond to the heterogeneity and needs of this population. The aim of this study was to assess the effectiveness of a PA program on the HRQoL in this population. Materials and Methods: With regard to recruitment, after baseline evaluations, participants were assigned to either the intervention group (IG, n = 38) or the control group (CG, n = 35). Functional capacity, mood, quality of life and depression were measured pre- and post-intervention. The IG underwent the “Physical Activity and Sport for Acquired Brain Injury” (PASABI) program, which was designed to improve HRQoL (1-h sessions, two to four sessions/week for 18 weeks). The CG underwent a standard rehabilitation program without PA. Results: Results for the IG indicated significant differences and large effect sizes for the physical and mental dimensions of quality of life, as well as mood and functional capacity, indicating an increase in HRQoL. No significant differences were found for the CG across any variables. Conclusions: The PASABI program was feasible and beneficial for improving physiological and functionality variables in the IG. The wide range of the activities of the PASABI program allow its application to a large number of people with ABI, promoting health through PA, especially in the chronic phase.

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Implementation and effectiveness of a multi-domain program for older adults at risk of cognitive impairment at neighborhood senior centres

Scientific Reports ◽

10.1038/s41598-021-83408-5 ◽

2021 ◽

Vol 11 (1) ◽

Author(s):

Pei Ern Mary Ng ◽

Sean Olivia Nicholas ◽

Shiou Liang Wee ◽

Teng Yan Yau ◽

Alvin Chan ◽

...

Keyword(s):

Quality Of Life ◽

Older Adults ◽

At Risk ◽

Cognitive Impairment ◽

Mobile Application ◽

Intervention Group ◽

Blood Parameters ◽

Attrition Rate ◽

Control Group

AbstractTo address the paucity of research investigating the implementation of multi-domain dementia prevention interventions, we implemented and evaluated a 24-week, bi-weekly multi-domain program for older adults at risk of cognitive impairment at neighborhood senior centres (SCs). It comprised dual-task exercises, cognitive training, and mobile application-based nutritional guidance. An RCT design informed by the Reach, Effectiveness, Adoption, Implementation, Maintenance framework was adopted. Outcome measures include cognition, quality of life, blood parameters, and physical performance. Implementation was evaluated through questionnaires administered to participants, implementers, SC managers, attendance lists, and observations. The program reached almost 50% of eligible participants, had an attrition rate of 22%, and was adopted by 8.7% of the SCs approached. It was implemented as intended; only the nutritional component was re-designed due to participants’ unfamiliarity with the mobile application. While there were no between-group differences in cognition, quality of life, and blood parameters, quality of life reduced in the control group and physical function improved in the intervention group after 24 weeks. The program was well-received by participants and SCs. Our findings show that a multi-domain program for at-risk older adults has benefits and can be implemented through neighborhood SCs. Areas of improvement are discussed.Trial registration: ClinicalTrials.gov NCT04440969 retrospectively registered on 22 June 2020.

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A randomized trial of the effect of peer education on the sexual quality of life in patients with myocardial infarction

Journal of Complementary and Integrative Medicine ◽

10.1515/jcim-2019-0204 ◽

2020 ◽

Vol 17 (3) ◽

Author(s):

Ali Abbasi ◽

Hossein Ebrahimi ◽

Hossein Bagheri ◽

Mohammad Hasan Basirinezhad ◽

Seyedmohammad Mirhosseini ◽

...

Keyword(s):

Quality Of Life ◽

Myocardial Infarction ◽

Health Care Professionals ◽

Peer Education ◽

Intervention Group ◽

Control Group ◽

Controlled Clinical Trial ◽

Sexual Quality Of Life ◽

Significant Difference

AbstractBackgroundOne of the factors associated with readmission is inappropriate sexual activity after myocardial infarction (MI). This study aimed to assess the effect of peer education on the sexual quality of life (SQOL) in patients with MI.MethodsIn this randomized controlled clinical trial, 70 patients with MI meeting the inclusion criteria were assigned to experimental or control groups using block randomization. Peer education for the intervention group was provided on the third day after MI. Education sessions lasted from 90 to 120 minutes. Data were collected using demographic, sexual quality of life-female (SQOL-F), and sexual quality of life-male (SQOL-M) questionnaires during the fourth week after MI.ResultsThere was no significant difference between the two groups before the intervention in terms of demographic and SQOL. The mean of SQOL in the peer education group was significantly higher than the control group at the 4-week follow-up.ConclusionsAccording to the results, using peer education is recommended for the sexual health care professionals.

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Asthma in Adolescents: A Randomized, Controlled Trial of an Asthma Program for Adolescents and Young Adults with Severe Asthma

Canadian Respiratory Journal ◽

10.1155/2002/106262 ◽

2002 ◽

Vol 9 (4) ◽

pp. 253-259 ◽

Cited By ~ 21

Author(s):

Robert L Cowie ◽

Margot F Underwood ◽

Cinde B Little ◽

Ian Mitchell ◽

Sheldon Spier ◽

...

Keyword(s):

Quality Of Life ◽

Emergency Department ◽

Randomized Controlled Trial ◽

Asthma Control ◽

Controlled Trial ◽

Intervention Group ◽

Control Group ◽

Randomized Controlled ◽

Disease Specific

BACKGROUND: Asthma is common and is often poorly controlled in adolescent subjects.OBJECTIVE: To determine the impact of an age-specific asthma program on asthma control, particularly on exacerbations of asthma requiring emergency department treatment, and on the quality of life of adolescents with asthma.METHODS: The present randomized, controlled trial included patients who were 15 to 20 years of age and had visited emergency departments for management of their asthma. The interventional group attended an age-specific asthma program that included assessment, education and management by a team of asthma educators, respiratory therapists and respiratory physicians. In the control group, spirometry was performed, and the patients continued to receive usual care from their regular physicians. The outcomes were assessed by a questionnaire six months after entry into the study.RESULTS: Ninety-three subjects entered the study and were randomly assigned to the intervention or control group. Of these, only 62 patients were available for review after six months. Subjects in both the control and the intervention groups showed a marked improvement in their level of asthma control, reflected primarily by a 73% reduction in the rate of emergency department attendance for asthma. Other indexes of disease control, including disease-specific quality of life, as assessed by questionnaires, were improved. There was, however, no discernible difference between the subjects in the two groups, with the exception of an improvement in favour of the intervention group in the symptom (actual difference 0.7, P=0.048) and emotional (actual difference 0.8, P=0.028) domains of the asthma quality of life questionnaire. The overall quality of life score favoured the intervention group by a clinically relevant difference of 0.6, but this difference did not reach statistical significance (P=0.06).CONCLUSIONS: Although all subjects demonstrated a significant improvement in asthma control and quality of life, the improvement attributable to this intervention was limited to two domains in disease-specific quality of life.

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Improving Quality of Life in Nursing Homes: The Structured Resident Interview Approach

Journal of Aging Research ◽

10.1155/2014/892679 ◽

2014 ◽

Vol 2014 ◽

pp. 1-8 ◽

Cited By ~ 4

Author(s):

Howard B. Degenholtz ◽

Abby L. Resnick ◽

Natalie Bulger ◽

Lichun Chia

Keyword(s):

Quality Of Life ◽

Nursing Home ◽

Nursing Homes ◽

Planning Process ◽

Intervention Group ◽

Nursing Home Residents ◽

Care Plan ◽

Control Group ◽

Improvement Programs

The quality of life (QOL) of the approximately 1.5 million nursing facility (NF) residents in the US is undoubtedly lower than desired by residents, families, providers, and policy makers. Although there have been important advances in defining and measuring QOL for this population, there is a need for interventions that are tied to standardized measurement and quality improvement programs. This paper describes the development and testing of a structured, tailored assessment and care planning process for improving the QOL of nursing home residents. The Quality of Life Structured Resident Interview and Care Plan (QOL.SRI/CP) builds on a decade of research on measuring QOL and is designed to be easily implemented in any US nursing home. The approach was developed through extensive and iterative pilot testing and then tested in a randomized controlled trial in three nursing homes. Residents were randomly assigned to receive the assessment alone or both the assessment and an individualized QOL care plan task. The results show that residents assigned to the intervention group experienced improved QOL at 90- and 180-day follow-up, while QOL of residents in the control group was unchanged.

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Impact of a 12-month web and smartphone-based intervention initiated during spa therapy to improve long-term physical activity of patients with chronic diseases: randomized controlled trial. (Preprint)

10.2196/preprints.29640 ◽

2021 ◽

Author(s):

Florie FILLOL ◽

Ludivine PARIS ◽

Sébastien PASCAL ◽

Aurélien MULLIEZ ◽

Christian-François ROQUES ◽

...

Keyword(s):

Quality Of Life ◽

Physical Activity ◽

Waist Circumference ◽

Controlled Trial ◽

Intervention Group ◽

Group Versus ◽

Control Group ◽

Spa Therapy

BACKGROUND Lack of physical activity (PA) and sedentary behaviors are leading risk factors for non-communicable diseases (NCD). Web-based interventions are effective in increasing PA in older adults and in NCD patients. In many countries a course of spa therapy is commonly prescribed to NCD patients and represents an ideal context to initiating lifestyle changes. OBJECTIVE The main objective of this study was to evaluate in NCD patients the effectiveness of an intervention combining an individual face-to-face coaching during spa therapy and, when returning home, a web- and smartphone-based PA program including a connected wrist pedometer and a connected weighing scale, on the achievement of physical activity guidelines (PAG) 12 months after the end of spa therapy. METHODS This was a 12-month, prospective, parallel-group, randomized controlled trial. Patients were enrolled during spa therapy and randomized 1:1 to intervention or control group who received usual advices about PA. From the end of spa therapy, PA, weight, waist circumference, and quality of life of the participants in both groups, were assessed by phone every 2 months. Primary outcome was meeting PAG (PA≥600 METs) at 12 months after the end of spa therapy. Secondary outcomes were: meeting current PAG at 6 months of follow-up; sedentary time, weight and waist circumference, PA and quality of life, at 6 and 12 months. Objective use data of the web-and smartphone-based PA program were collected. Analytic methods include intention-to-treat and constrained longitudinal data analyses. RESULTS The study sample was 228 patients (female : 77.2% (176/228), mean age: 62.4 years (SD 6.7), retired: 53.9% (123/228), mean BMI = 28.2 kg.m-2 (SD 4.2)). No group differences were found for any baseline variable. At 12 months, the proportion of patients achieving PAG was significantly higher in intervention group versus control group (81% vs 67% respectively, OR = 2.34 (95% CI 1.02- 5.38; P=.045). No difference between intervention and control group was found neither in achieving PAG at 6 months nor for sedentary time, weight and waist circumference, at 6 and 12 months. Regarding quality of life, the physical component subscale score was significantly higher at 12 months in intervention group versus control group (mean difference: 4.1 (95% CI 1.9-6.3; P<.001). The mean duration use of the program was 7.1 months (SD 4.5). Attrition rate during the first 2 months of the program was 20.4% (23/113) whereas 39.8% (45/113) of the participants used the program for at least 10 months. CONCLUSIONS The results showed significantly more participants meeting PAG at one year in the intervention group compared to controls. A course of spa therapy offers the ideal time and setting to implement education in PA. Digital coaching seems to be more efficient than usual coaching for increasing the level of PA and decreasing sedentariness on the long term. CLINICALTRIAL ClinicalTrials.gov NCT02694796; https://clinicaltrials.gov/ct2/show/NCT02694796.

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