scholarly journals A multicenter study on quality of life of the “greater patient” in congenital ichthyoses

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Damiano Abeni ◽  
Roberta Rotunno ◽  
Andrea Diociaiuti ◽  
Simona Giancristoforo ◽  
Domenico Bonamonte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Whole Body ◽  
Recurrent Infections ◽  
Palmoplantar Keratoderma ◽  
Patient Reported ◽  
The Family ◽  
Foul Smell ◽  
Disease Impact

Abstract Background Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the family dermatology life quality index (FDLQI). Disease severity was assessed by the dermatologist in each center. Results Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (1) time needed for care, (2) extra-housework, and (3) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P = 0.003). Features associated with greater family burden included recurrent infections (P = 0.004), foul-smell (P = 0.009), palmoplantar keratoderma (P = 0.041), but also presence of scales on the face (P = 0.039) and ear deformities (P = 0.016). Conclusions Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of family caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.

scholarly journals A Multicenter Study On Quality Of Life of The “Greater Patient” In Congenital Ichthyoses

2021 ◽  
Author(s):  
Damiano Abeni ◽  
Roberta Rotunno ◽  
Andrea Diociaiuti ◽  
Simona Giancristoforo ◽  
Domenico Bonamonte ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Whole Body ◽  
Recurrent Infections ◽  
Psychological Burden ◽  
Patient Reported ◽  
The Family ◽  
Foul Smell ◽  
Disease Impact

Abstract Background: Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface. Altogether, disease signs and symptoms and treatment modalities have a major impact on quality of life of patients and their caregivers. However, very few studies have evaluated the family disease burden in ARCI. Methods: We have performed an Italian multicenter cross-sectional study to assess the secondary disease impact on family members of pediatric and adult patients with ARCI, using a validated dermatology-specific questionnaire, the Family Dermatology Life Quality Index (FDLQI). Disease severity was assessed by the dermatologist in each center.Results: Seventy-eight out of 82 patients who were accompanied by at least one family member filled the FDLQI. Forty-eight (61.5%) patients were aged less than 18 years. The mean FDLQI score was 10.3 (median 10), and the most affected dimensions were (i) time needed for care, (ii) extra-housework, and (iii) household expenditure. Higher total FDLQI score significantly correlated with more severe disease score (P= 0.003). Features associated with greater family burden included recurrent infections (P= 0.004), foul-smell (P=0.009), palmplantar keratoderma (P= 0.041), but also presence of scales on the face (P= 0.039) and ear deformities (P= 0.016). Conclusions: Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.

scholarly journals Parental Stress and Family Quality of Life: Surveying Family Members of Persons with Intellectual Disabilities

2020 ◽  
Vol 17 (23) ◽  
pp. 9007
Author(s):  
Cristina Jenaro ◽  
Noelia Flores ◽  
Belén Gutiérrez-Bermejo ◽  
Vanessa Vega ◽  
Carmen Pérez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Parenting Stress ◽  
Parental Stress ◽  
Family Members ◽  
Family Quality Of Life ◽  
Quality Of Life Scale ◽  
The Family ◽  
The Impact

(1) Background. This study assesses the quality of life in families with a member with an intellectual disability using the Family Adjustment and Adaptation Response framework. (2) Methods. The study included 515 Spanish participants whose family members with disabilities range in age from infancy to adulthood. We hypothesized that it is possible to predict parenting stress by paying attention to the meaning families give to themselves and their circumstances while controlling for the impact of other variables such as family capabilities and characteristics of the family member with disabilities. We used the Beach Center Family Quality of Life Scale and the section on Exceptional needs of medical and behavioral support from the Supports Intensity Scale, together with other potential predictors. The subscale on parental stress from the Parenting Stress Index–Short Form was utilized as a criterion measure. (3) Results. Hierarchical multiple regression analysis revealed that 49% of parental stress was predicted by dysfunctional interaction, difficult behaviors, low emotional wellbeing, poor family interaction, as well as kinship as parents, and the severity of both the medical needs and intellectual disability. (4) Conclusions. The stress experienced by those families is mostly predicted by the meaning they give to themselves and their circumstances. Implications of these findings for service delivery are discussed.

scholarly journals Transactional Analysis as a Method to Test the Quality of Life of a Family

2015 ◽  
Vol 5 (1) ◽  
pp. 27-38
Author(s):  
Dorota Strzelczyk
Keyword(s):  
Quality Of Life ◽  
Complex System ◽  
Interpersonal Communication ◽  
Interpersonal Relationships ◽  
Family Environment ◽  
Family Members ◽  
Transactional Analysis ◽  
Open Disclosure ◽  
The Family

Abstract One of the actions that affect the quality of life of the family as a complex system of relationships is interpersonal communication that takes place between the members of the family. In line with the transactional analysis, the trend in psychology founded by E. Berne, relationships between individuals should be based on honest and open disclosure of one’s desires and attitudes, i.e. variety of transactions. Otherwise, there are specific game leading to maintain and increase the distance between family members, weaken the ties between them and leading to a reduction in the quality of interpersonal relationships. The paper below aims to make closer the problems of transactional analysis, beginning from the explanation of the structure of “Ego” according to Berne and the terms “transactions”, “reinforcement” and “life scripts”. There will be presented also games played in family environment and their consequences for the proper functioning of the family.

scholarly journals A new indicator to measure discordance between patient reported outcomes and traditional disease activity holds promise to advance care trajectories improve care in patients with early Rheumatoid Arthritis

2021 ◽  
Author(s):  
Sofia Pazmino ◽  
Anikó Lovik ◽  
Annelies Boonen ◽  
Diederik De Cock ◽  
Veerle Stouten ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Activity ◽  
Disease Control ◽  
Patient Reported Outcomes ◽  
Sustained Remission ◽  
List Type ◽  
Factor Scores ◽  
Patient Reported ◽  
Disease Impact

ABSTRACTObjectiveTo unravel disease impact in early RA patients by separately quantifying patient reported (PRF), clinical (CF) and laboratory (LF) factors. We put forward a new indicator, the discordance score (DS), for early identification and prediction of unmet patient outcomes in terms of future achievement of sustained remission and RA-related quality of life (QoL).MethodsWe obtained factor scores via factor analysis in the CareRA trial, then calculated the DS between PRF and the mean of the other scores. We computed the improvement from baseline to week 104 (%) and area-under-the-curve (AUC) across time-points per factor score and compared these between patients achieving or not achieving sustained (week 16 to 104) remission (DAS28CRP<2.6) with ANOVA. Logistic and linear regressions respectively were used to predict SR based on previous factor and discordance scores, and QoL at year 1 and 2 based on DS at week 16.ResultsPRF, CF and LF scores improved rapidly within 8 weeks. In patients achieving SR; PRF improved 57%, CF 90% and LF 27%, compared to 32% PRF (p=0.13), 77% CF (p<0.001) and 9% LF (p=0.36) score improvement in patients not achieving SR. Patients achieving SR had an AUC of 15.7, 3.4 and 4.8 for PRF, CF and LF respectively, compared to 33.2, 10.1, and 7.2 in participants not achieving SR (p<0.001 for all). Early factor and discordance scores were associated with later stage factor scores as well as QoL and PRF scores predicted SR (p<0.005 for PRF and DS).ConclusionsAll factor scores improved rapidly, especially in patients achieving SR. Patient-reported burden improved less extensively. Discordance scores could help in predicting the need for additional non-pharmacological interventions to achieve SR and decrease disease impact.KEY MESSAGESWhat is already known about this subject?Early and intensive RA drug-treatment using disease activity as a target allows rapid disease control and prevents joint destruction.Including pain, fatigue and physical function when assessing patients with early RA broadens the evaluation of disease impact.What does this study add?Leveraging patient reported outcomes (pain, fatigue and physical function) and traditional disease activity measures, we introduce a new indicator (named discordance score) for unraveling disease impact and treatment efficacy.We show how the discordance score stands for current unmet patient reported outcomes and could be used to predict future sustained disease contol and quality of life (1 and 2 years after baseline).We demonstrate this effect both in patients with and without sustained remissionHow might this impact on clinical practice or future developments?The earlier detection of unmet needs despite good disease control could allow to perform timely interdisciplinary interventions other than medication adaptations and could promote psychosocial wellbeing for patients.

scholarly journals “Her Illness Is a Project We Can Work on Together”

2013 ◽  
Vol 15 (3) ◽  
pp. 130-136 ◽  
Author(s):  
David Rintell ◽  
Richard Melito
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Crisis Intervention ◽  
Family Members ◽  
The Family ◽  
New Diagnosis ◽  
The Impact ◽  
Family Centered

This article presents a model for intervening with families that are addressing a new diagnosis of multiple sclerosis (MS) in one member. The model is collaborative, integrative, and family-centered. It involves both working with the family collaboratively and providing strategies to promote greater collaboration within the family. The model integrates elements of crisis intervention theory, psycho-education, and family-centered approaches. The model was developed with families addressing MS, and was piloted with three families. The intervention was found to improve family members' ability to collaborate with each other. Such increased collaboration may enhance the family's ability to manage long-term illness more effectively, help the family address the impact of the illness on all family members, and generally improve the family's quality of life.

scholarly journals Family Composition and Expressions of Family-Focused Care Needs at an Academic Memory Disorders Clinic

2013 ◽  
Vol 2013 ◽  
pp. 1-6
Author(s):  
Brandalyn C. Riedel ◽  
Jamie K. Ducharme ◽  
David S. Geldmacher
Keyword(s):  
Quality Of Life ◽  
Treatment Success ◽  
Family Members ◽  
Family Quality Of Life ◽  
Care Needs ◽  
Family Unit ◽  
Dementia Patients ◽  
People With Dementia ◽  
The Family

Objective. To understand who dementia patients identify as their family and how dementia affects family life.Background. Dementia care is often delivered in family settings, so understanding the constituency and needs of the family unit involved in care is important for determining contributors to family quality of life.Design/Methods. Seventy-seven families receiving care at an academic dementia clinic completed questionnaires regarding the affected person and the family. Responses were categorized as focused on an individual’s needs or the family’s needs.Results. Respondents identified a mean of 3.77 family members involved in care. Spouse (80.5%), daughter (58.4%), son (46.8%), and stepchild or child-in-law (37.7%) were the most frequently listed family members. Questions regarding the effect of dementia-related changes in cognition and mood were most likely to elicit a family-focused response. Questionnaire items that inquired about specific medical questions and strategies to improve family function were least likely to elicit a family-focused response.Conclusions. Both caregivers and persons with dementia frequently provided family-focused responses, supporting the construct of dementia as an illness that affects life in the family unit. This finding reinforces the potential utility of family-centered quality of life measures in assessing treatment success for people with dementia.

scholarly journals Neuromuscular function and fatigability in people diagnosed with head and neck cancer before versus after treatment

2019 ◽  
Author(s):  
Colin Lavigne ◽  
Harold Lau ◽  
George Francis ◽  
S. Nicole Culos-Reed ◽  
Guillaume Y. Millet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Neck Cancer ◽  
Whole Body ◽  
Health Related Quality ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Purpose: Treatment for head and neck cancer is associated with multiple side-effects, including loss of body mass, impaired physical function, and reduced health-related quality of life. This study aimed to investigate the impact of treatment (radiation therapy ± concurrent chemotherapy) on (i) muscle strength, muscle cross-sectional area and patient-reported outcomes, and (ii) central and peripheral alterations during a whole-body exercise task.Methods: Ten people with head and neck cancer (4 female; 50±9 years) completed a lab visit before and after (56±30 days) completion of treatment. Participants performed a neuromuscular assessment (involving maximal isometric voluntary contractions in the knee extensors and electrical stimulation of the femoral nerve) before and during intermittent cycling to volitional exhaustion. Anthropometrics and patient-reported outcomes were also assessed.Results: From before to after treatment, maximal isometric muscle strength was reduced (P=0.002, d=0.73), as was potentiated twitch force (P&lt;0.001, d=0.62), and muscle cross-sectional area (e.g. vastus lateralis: P=0.010, d=0.64). Exercise time was reduced (P = 0.008, d = 0.62) and peripheral processes contributed to a reduction in maximal force due to cycling. After treatment, the severity of self-reported fatigue increased (P=0.041, r=-0.65) and health-related quality of life decreased (P=0.012, r=-0.79).Conclusion: Neuromuscular function was impaired in patients with head and neck cancer after treatment. Whole-body exercise tolerance was reduced and resulted in predominantly peripheral, rather than central, disturbances to the neuromuscular system. Future research should evaluate strength training after treatment for head and neck cancer, with the overall aim of reducing fatigue and improving health-related quality of life.

scholarly journals 416 - Family quality of life in Neurodegenerative Diseases and associated factors

2021 ◽  
Vol 33 (S1) ◽  
pp. 39-39
Author(s):  
Eva González ◽  
Alba Aza ◽  
Isabel Vicario-Molina ◽  
María Gómez-Vela ◽  
Mª Begoña Orgaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Neurodegenerative Diseases ◽  
Rural Areas ◽  
Family Members ◽  
Explanatory Models ◽  
Border Region ◽  
Family Quality Of Life ◽  
The Family ◽  
The Impact

Introduction:Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.Method:The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.Results:The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).Conclusions:These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

scholarly journals Dukungan Keluarga Dalam Peningkatan Kualitas Hidup Pasien Dengan Gagal Ginjal Kronik Di Rsud dr. Doris Sylvanus Palangka Raya

2019 ◽  
Vol 10 (2) ◽  
pp. 795-808
Author(s):  
Putria Carolina ◽  
Zia Abdul Aziz
Keyword(s):  
Quality Of Life ◽  
Family Support ◽  
Support System ◽  
Kidney Failure ◽  
Family Members ◽  
Chronic Kidney Failure ◽  
Kidney Damage ◽  
Electrolyte Balance ◽  
The Family

Latar Belakang: Gagal ginjal kronis (GGK) adalah kerusakan ginjal yang bersifat progresif dan ireversibel sehingga fungsi ginjal menghilang serta terjadi kerusakan ginjal progresif yang berakibat fatal dan ditandai dengan uremia (urea dan limbah nitrogen lainnya) yang beredar dalam darah serta komplikasinya jika tidak dilakukan dialisis atau transplantasi ginjal. GGK atau penyakit ginjal tahap akhir merupakan gangguan fungsi ginjal yang progresif dan ireversibel dimana kemampuan tubuh gagal untuk mempertahankan metabolisme dan keseimbangan cairan dan elektrolit, menyebabkan uremia (retensi urea dan sampah nitrogen lainnya dalam darah. Peran keluarga sangat penting bagi setiap aspek perawatan kesehatan anggota keluarga. Dukungan keluarga pada pasien dengan gagal ginjal kronik berupa dukungan instrumental, dukungan informasional, dukungan emosional, dukungan penghargaan dan dukungan harga diri. Dukungan keluarga ini diberikan sepajang hidup pasien yang menunjang untuk penyembuhan pasien. Kualitas hidup adalah ukuran konseptual atau operasional yang sering digunakan dalam situasi penyakit kronik sebagai cara untuk menilai dampak terapi pada pasien. Pengukuran konseptual mencakup kesejahteraan, kualitas kelangsungan hidup, kemampuan seseorang untuk secara mandiri melakukan kegiatan sehari-hari. Kualitas merupakan sasaran utama yang ingin dicapai di bidang pembangunan sehingga kualitas hidup ini sejalan dengan tingkat kesejahteraan. Diharapkan semakin sejahtera maka kualitas hidup semakin tinggi. Kualitas hidup ini salah satunya dipengaruhi oleh derajat kesehatan. Semakin tinggi derajat kesehatan seseorang maka kualitas hidup juga semakin tinggiTujuan: Penelitian ini bertujuan untuk memperoleh gambaran dukungan keluarga dalam meningkatkan kualitas hidup pasien dengan gagal ginjal kronik di RSUD Dr. Doris Sylvanus Palangka Raya.Metode: Pengumpulan data dilakukan dengan wawancara mendalam pada sembilan orang partisipan yaitu keluarga yang anggota keluarganya menjalani Hemodialisa di Unit Hemodialisa RSUD Dr. Doris Sylvanus Palangka Raya. Analisis data yang digunakan menggunakan teknik Collaizi.Hasil: Terdapat lima tema yang teridentifikasi dalam penelitian ini yaitu respon berduka; respon menerima; dampak psikososial; dampak spiritual dan dukungan keluarga. Simpulan: Berdasarkan hasil penelitian ini diharapkan perawat meningkatkan peran dan fungsinya dengan baik dalam melaksanakan asuhan keperawatan professional dengan melibatkan keluarga sebagai support system sehingga dapat dicapai kualitas hidup pasien dengan optimal.Kata Kunci: dukungan keluarga, GGK, kualitas hidup Background: Chronic kidney failure (CKD) is kidney damage that is progressive and irreversible so that kidney function disappears and progressive kidney damage occurs which is fatal and is characterized by uremia (urea and other nitrogen wastes) circulating in the blood and its complications if no dialysis is performed or kidney transplant. CKD or end-stage kidney disease is a progressive and irreversible renal function disorder where the body's ability to fail to maintain metabolism and fluid and electrolyte balance, causes uremia (retention of urea and other nitrogenous wastes in the blood. The role of the family is very important for every aspect of health care for family members Family support for patients with chronic kidney failure in the form of instrumental support, informational support, emotional support, appreciation support and self-esteem support This family support is given as long as a patient's life that supports patient recovery.Quality of life is a conceptual or operational measure that is often used in chronic disease situation as a way to assess the impact of therapy on patients Conceptual measurements include well-being, quality of survival, ability of a person to independently carry out daily activities Quality is the main target to be achieved in development so that the quality of life is in line with the level of welfare. It is hoped that the more prosperous the higher the quality of life. Quality of life is one of them influenced by the degree of health. The higher the degree of one's health, the higher the quality of life.Objective: This study aims to obtain a picture of family support in improving the quality of life of patients with chronic kidney failure at RSUD Dr. Doris Sylvanus Palangka Raya.Method: Data collection was carried out by in-depth interviews with nine participants, namely families whose family members underwent Hemodialysis in the Hemodialysis Unit of RSUD Dr. Doris Sylvanus Palangka Raya. Analysis of the data used using the Collaizi technique.Results: There were five themes identified in this study, namely the grieving response; response received; psychosocial impact; spiritual impact and family support.Conclusion: Based on the results of this study nurses are expected to increase their role and function properly in implementing professional nursing care by involving the family as a support system so that optimal quality of life of patients can be achieved.Keywords: family support, CRF, quality of life.

Sign in / Sign up

Export Citation Format

Share Document