Abstract Leukemia treatment has been implicated to be responsible for a diversity of long-term adverse effects (Pui 2008), which can occur even years after diagnosis and can seriously impair survivors’ performance status and quality of life (Campbell et al. 2007, Zeltzer et al. 2008). The aim of the present work was to assess health-related quality of life in long-term survivors of acute lymphoblastic leukemia (ALL), and to find out whether vocational rehabilitation can promote the coping at work of young people who take part in a training intervention or help them find employment. Neuropsychological testing was performed on 64 survivors. Cranial irradiation had been administered to 44 of the survivors, while 20 survivors had been treated solely with chemotherapy. A control group consisted of 45 healthy young adults. We found that young adult survivors of childhood ALL treated with cranial irradiation had clear progressive deficits in their neurocognitive functioning at a mean of 20 years after diagnosis compared with healthy controls. Non-irradiated ALL survivors performed significantly better, but even they had statistically significant impairments in some of the neuropsychological test scores compared with the controls. Rand-36-Item health Survey (RAND-36) was used to assess subjective HRQoL, depressive symptoms were assessed with Beck Depression Inventory (BDI-21), and mental distress with General Health Questionnaire (GHQ-12) in 74 survivors of ALL. The control group consisted of 146 healthy young adults selected from local population registry. ALL survivors showed good HRQoL scores in comparison to the control group. Patients who had been treated for an ALL relapse and had received the most intensive chemo- and radiotherapy had significantly higher scores on mental health and vitality than the controls. Survivors of ALL report fewer depressive symptoms and equal mental well-being compared to healthy controls. Nine out of 63 survivors were selected for rehabilitation based on their occupation and psychosocial difficulties. The occupational rehabilitation course improved physical fitness and decreased overweight in long-term survivors of ALL, but impaired their HRQoL. Our findings support the idea that ALL survivors’ subjective experience of well-being is possibly affected by a repressive adaptive style. / Tiivistelmä Leukemiahoidoilla on todettu olevan pitkäaikaisvaikutuksia (Pui 2008), jotka voivat ilmetä jopa vuosia diagnoosin jälkeen heikentäen sairaudesta selvinneiden toimintakykyä ja elämänlaatua (Campbell et al. 2007, Zeltzer et al. 2008). Tämän tutkimuksen tavoitteena oli arvioida akuutista lymfaattisesta (ALL) leukemiasta selvinneiden terveyteen liittyvää elämänlaatua pitkällä aikavälillä sekä selvittää, voidaanko ammatillisen kuntoutuksen avulla edistää interventioon osallistuneiden työssä selviytymistä tai työllistymistä. Neuropsykologiseen tutkimukseen osallistui 64 ALL pitkäaikaisselviytyjää. Heistä 44 oli saanut pään alueen sädehoitoa ja 20 pelkästään solunsalpaajahoitoa. Verrokkiryhmässä oli 45 tervettä nuorta aikuista. Havaitsimme, että lapsuudessa pään alueen sädehoitoa saaneilla ALL-selviytyjillä oli verrokkeihin verrattuna selkeitä progressiivisia muutoksia neurokognitiivisessa toimintakyvyssä keskimäärin 20 vuotta diagnoosista. Ne, jotka eivät olleet saaneet sädehoitoa suoriutuivat huomattavasti paremmin, mutta heilläkin havaittiin tilastollisesti merkittäviä puutoksia joillakin neuropsykologisten testien osa-alueilla verrokkeihin verrattuna. 74 entisen ALL-potilaan terveyteen liittyvää elämänlaatua (HRQoL) mitattiin Rand-36 -mittarilla, masennusoireita Beckin masennustestillä (BDI-21) ja henkistä hyvinvointia General Health Questionnaire -mittarilla (GHQ-12). Verrokkiryhmäksi valittiin väestörekisteristä 146 tervettä nuorta aikuista. ALL-ryhmässä tutkittavien terveyteen liittyvää elämänlaatua mittaavat pisteet olivat hyvät verrokkiryhmään verrattuna. Ne potilaat, joita oli hoidettu leukemian uusiutumisen takia ja jotka olivat saaneet intensiivisintä solunsalpaaja- ja sädehoitoa saivat huomattavasti paremmat pisteet psyykkisen hyvinvoinnin ja vitaalisuuden osa-alueilla kuin verrokit. ALL -selviytyjät raportoivat vähemmän masennusoireita, ja he arvioivat psyykkinen hyvinvointinsa yhtä hyväksi kuin verrokit. Yhdeksän ALL pitkäaikaisselviytyjää osallistui heille suunnattuun ammatilliseen kuntoutusinterventioon. Ammatillinen kuntoutuskurssi paransi ALL -selviytyjien fyysistä suorituskykyä ja vähensi ylipainoa, mutta heikensi terveyteen liittyvää elämänlaatua. Tutkimustulokset tukevat ajatusta, että repressiivinen adaptaatio voi vaikuttaa lapsuusiän leukemiasta selvinneiden subjektiiviseen hyvinvoinnin kokemukseen.

L'évaluation de la qualité de vie des patients a une place centrale en santé, en particulier dans les recherches et les politiques de santé publique. De nombreux instruments de mesure sont développés et les discours sur la qualité de vie en santé se multiplient. Diverses approches du concept cohabitent. Mais ce développement et cette diversité s'accompagnent de doutes persistants sur la validité des concepts de qualité de vie en santé. Pour comprendre et peut-être réduire cette confusion, il faut d'abord s'accorder sur un niveau d'analyse commun du concept de qualité de vie en santé. Or, à notre connaissance, un tel niveau d'analyse n'existe pas. Ce niveau d'analyse est pourtant nécessaire pour expliciter, comparer et examiner les choix théoriques qui déterminent la conception de la qualité de vie, et surtout de la bonne qualité de vie, sous-jacente aux instruments de mesure. C'est la conceptualisation de la valeur, de ce qu'il y a de bon dans une vie qui est d'abord en jeu. Or ceci est occulté. En effet, l'approche de la qualité de vie en santé est conçue généralement, mais à tort, comme neutre par rapport à la valeur. Cette occultation de la valeur explique probablement pourquoi un cadre d'analyse commun des concepts en usage de qualité de vie liée à la santé fait défaut. A partir d'une compréhension de la logique de la valeur spécifique à la qualité de vie, nous tentons de développer ici ce cadre d'analyse conceptuelle. / The evaluation of quality of the patients' life is central in health, especially in Public Health research programs and policies. Many instruments are developed and discourses on health related quality of life grow in number and diversity. Several approaches and accounts of the concept coexist. However, this growth and diversity is synonymous with enduring doubts about the validity of the existing concepts of health related quality of life. In order to understand and maybe dissolve the confusion, we have first to agree on a common framework of analysis for the concept of quality of life. But, to our knowledge, this framework of analysis is not available. And yet this framework is necessary in order to explicit, compare and test the theoretical choices that determine the concept of quality of life, and most of all of the good quality of life, underlying the measuring instruments. It is indeed the conceptualization of value, of what is good in life, which is at stake. But this aspect is concealed: the approach of quality of life in health is generally but mistakenly conceived as value free or neutral. This concealment probably explains why a common framework of analysis of the existing concepts of health related quality of life is not available. From an understanding of the logic of value specific to quality of life, we try to develop such a framework of conceptual analysis.

O tratamento radioterápico é considerado como uma das modalidades terapêuticas padrão para os cânceres de cabeça e pescoço, cujo objetivo é controlar a evolução do tumor com o menor dano possível aos tecidos e órgãos normais adjacentes, porém, apesar de apresentar a vantagem de preservar a estrutura dos tecidos, pode acarretar reações adversas que se manifestam na cavidade oral, e também efeitos colaterais físicos generalizados, sendo a fadiga o mais comum. Objetivo: avaliar a efetividade da Prática Integrativa e Complementar - Relaxamento com Visualização Guiada, sobre a redução do sintoma de fadiga e melhora da Qualidade de Vida Relacionada à Saúde, durante o tratamento radioterápico. Método: estudo quantitativo, quase-experimental, de corte longitudinal e prospectivo, com a participação de 102 pacientes em início de tratamento radioterápico, com a alocação intencional em dois grupos, o de Intervenção (n=42) e o de Comparação (n=60). Apenas os participantes do Grupo Intervenção realizaram a prática de relaxamento com visualização guiada durante o tratamento radioterápico, porém, todos os participantes responderam aos questionários de avaliação. Foram utilizados os questionários de Qualidade de Vida Relacionada à Saúde (FACT H&N) e a Escala de Fadiga de Piper Revisada. A prática de relaxamento com visualização guiada foi aplicada pela pesquisadora do estudo, por meio de uma gravação de áudio contendo comandos verbais, os quais guiavam o paciente para a realização da prática. Para avaliar o efeito da intervenção entre os grupos intervenção e de controle, foi utilizada a técnica de regressão logística multinomial, estimando razões de chance (odds ratios) por pontos e respectivos erros-padrão (Ep). Resultados: na etapa descritiva dos dados sociodemográficos e clínicos, evidenciou-se a predominância do sexo masculino, faixa etária entre 41 e 60 anos, baixo nível de escolaridade, aposentados, católicos, em uso regular de álcool e tabaco, câncer de orofaringe, em estádio IV. Foram evidenciadas diferenças estatisticamente significativas entre os grupos em relação às variáveis procedência, estado civil e \"tipo de cirurgia\" e os valores-p foram, respectivamente, p=0,000, p= 0,002 e p=0,027. Na etapa analítica evidenciou-se que o relaxamento com visualização guiada mostrou-se efetivo em especial para os domínios global, comportamental e sensorial na segunda aplicação (T2), e afetivo e sensorial na terceira aplicação (T3), levando à redução do sintoma de fadiga, e quanto à Qualidade de Vida Relacionada à Saúde não houve diferença estatisticamente significativa entre os grupos. Conclusão: os resultados demonstraram que o relaxamento com visualização guiada não teve efeito na melhora da Qualidade de Vida Relacionada à Saúde durante o tratamento radioterápico nos pacientes com câncer de cabeça e pescoço, mas reduziu os níveis de fadiga. Trata-se de uma prática de baixo custo, a qual mostrou-se efetiva na redução do sintoma de fadiga, portanto, seu uso deve ser divulgado na prática dos cuidados aos pacientes oncológicos / Radiation therapy is considered to be one of the standard therapeutic modalities for head and neck cancers in order to control tumor evolution with the lowest possible damage to adjacent normal tissues and organs. Although it has the advantage of preserving the structure of tissues, it can lead to adverse reactions occurring in the oral cavity, as well as generalized physical side effects, being fatigue the most common of them. Objective: to evaluate the effectiveness of an Integrative and Complementary Practice - Relaxation with Guided Imagery, on the reduction of fatigue symptom and improvement of Health-Related Quality of Life, during the radiotherapy treatment. METHODS: A quantitative, quasi-experimental, longitudinal and prospective study was carried out with the participation of 102 patients at the beginning of radiotherapy, intentionally allocated in two groups: Intervention (n=42) and Comparison (n = 60). While only the participants of the Intervention Group performed the relaxation practice with guided imagery during the radiotherapy treatment, all the participants answered the evaluation questionnaires. The HealthRelated Quality of Life questionnaires (FACT-H&N) and the revised Piper Fatigue Scale were used. The practice of relaxation with guided imagery was applied by the researcher of the study, through an audio recording containing verbal commands, which guided the patient to perform the practice. To evaluate the effects of the intervention comparing the intervention and control groups, it was used multinomial logistic regression technique in order to estimate odds ratios by points and their respective standard errors (SE). Results: the descriptive stage found in the sociodemographic and clinical data, the prevalence of males, age between 41 and 60 years old, low level of schooling, retirees, Catholics, regular use of alcohol and tobacco, as well as oropharynx cancer in stage IV. There were statistically significant differences between the groups related to the variables place of residence, marital status and \"type of surgery\", while the p-values were respectively, p=0.000, p=0.002 and p = 0.027. In the analytical stage, it was observed that the relaxation with guided imagery was effective for the global, behavioral and sensorial domains in the second application (T2), as well as for the affective and sensorial domains in the third application (T3), leading to the reduction of the fatigue symptoms, while there was no statistically significant difference between the groups related to Health-Related Quality of Life. Conclusion: The results showed that while guided imagery relaxation had no effect on the improvement of the Health-Related Quality of Life during the radiotherapy treatment in patients with head and neck cancer, it still reduced fatigue levels. It is a low-cost practice, which has proved effective in reducing the fatigue symptoms, so its use must be disseminated in caring practices directed to cancer patients

Hintergrund: Der Einfluss von rheumatoider Arthritis auf Psyche, Lebensqualität und Alltag der Patienten ist groß. Für eine positive Langzeitprognose sind frühzeitige Diagnosestellung und Therapieeinleitung entscheidend. Diese werden maßgeblich von den strukturellen Gegebenheiten der ambulanten rheumatologischen Versorgung beeinflusst. Hier zeigen sich trotz großer Fortschritte in den letzten Jahren weiterhin Defizite. Anhand einer Patientenbefragung in Leipzig sowie ländlichen Gebieten Sachsens sollen regionale Unterschiede und eventuelle Mängel in der ambulanten Versorgung sowie deren Einfluss auf die Lebensqualität, psychische Gesundheit und Entscheidungsfindungsprozesse untersucht werden. Methoden: Aus sechs Praxen in der Stadt Leipzig und drei Praxen in Kleinstädten (Naunhof, Plauen und Hoyerswerda) wurden Patienten mit der Erstdiagnose rheumatoide Arthritis im ersten Quartal 2011 mittels Fragebögen zu psychischer Gesundheit (Hospital Anxiety and Depression Scale und Short-Form-36-Health-Survey) sowie Entscheidungsfindungsprozessen (Decision Making Preference Scale) befragt. Ein eigens entwickelter Fragebogen erhob Beschwerde- und Behandlungsdauer sowie allgemeine medizinische Daten und Medikation. Ergebnisse: 19 Land- und 38 Stadtpatienten wurden eingeschlossen. Landpatienten suchten signifikant später den Hausarzt auf (Land 15, Stadt 12 Monate, p= .023). Die hausärztliche Behandlungsdauer bis zur Überweisung zum Rheumatologen betrug auf dem Land 5,4 und in der Stadt 2,4 Monate. Bei 70% der Stadt- und 40% der Landpatienten erfolgte die Überweisung innerhalb der ersten sechs Wochen. Die Gesamtdauer von Beschwerdebeginn bis zur Überweisung zum Rheumatologen war mit 20 Monaten auf dem Land signifikant länger als in der Stadt (15 Monate, p= .043). Die Wahl der Medikation durch den Rheumatologen hing signifikant mit der Herkunft der Patienten zusammen (p= .006). Nach Erstkontakt erhielten 65% der Land- und 55% der Stadtpatienten ein DMARD. In beiden Regionen wurde überwiegend mit Glukokortikoiden behandelt (Stadt 82%, Land 71%). Auf dem Land zeigten die Patienten weniger Interesse an Mitwirkung im partizipativen Entscheidungsfindungsprozess und waren mehrheitlich bereit, sich der Meinung des Arztes auch gegen den eigenen Willen anzuschließen. In der Stadt war der Wunsch nach aktiver Teilhabe an medizinischen Entscheidungen bei jüngeren und höher gebildeten Patienten signifikant größer als bei älteren oder bildungsfernen Erkrankten. Mit 21% wiesen tendenziell mehr Landpatienten depressive Symptome auf als in der Stadt (14%). Auf dem Land bestand häufiger der Verdacht auf krankheitsassoziierte Angststörungen. Zusätzlich litten die Patienten hier signifikant stärker unter ihren Schmerzen als in der Stadt (p= .026), wobei sich kein grundsätzlicher Unterschied in der gesundheitsbezogenen Lebensqualität ergab. Schlussfolgerung: In Stadt und Land zeigen sich Defizite in der ambulanten rheumatologischen Versorgung, wobei der Grad der Unterversorgung mit der Herkunft assoziiert ist und Landpatienten signifikant länger bis zum ersten Rheumatologenkontakt brauchen. Maßgeblich verantwortlich hierfür ist die verspätete Vorstellung der Patienten beim Hausarzt ebenso wie die ungleiche Facharztverteilung in Stadt und Land. Patienten auf dem Land sind tendenziell depressiver, passiver und schmerzgeplagter, wobei sich keine grundsätzlichen Unterschiede in der gesundheitsbezogenen Lebensqualität ergeben. Die Ergebnisse spiegeln Ärztemangel und infrastrukturelle Probleme wider. Weiterer Schulungs- und Aufklärungsbedarf zur verstärkten Bildung eines öffentlichen Bewusstseins für die Erkrankung rheumatoide Arthritis wird ebenso deutlich wie die Notwendigkeit für die Bahnung schnellerer Zugangswege zu rheumatologischer Behandlung.

of the dissertation Impact of minimally invasive approach on pulmonary function in patients undergoing aortic valve replacement MUDr. Ján Gofus The most common minimally invasive approach to aortic valve replacement is upper hemisternotomy, which has been implemented at our department, as well. Preserving the lower half of thoracic cage could lead to lower postoperative drop of pulmonary function, apart from other benefits. Nevertheless, publications on this topic are insufficient and controversial. Our aim was to perform a prospective randomized trial comparing upper hemisternotomy with standard (median) sternotomy in terms of pulmonary function changes perioperatively. We also added a novel exercise tolerance test, one-minute sit-to-stand test, and a quality of life evaluation to the study. We included patients indicated for elective isolated aortic valve replacement with bioprosthesis who were older than 65 years, signed informed consent, and in which both surgical approaches were technically feasible. Exclusion criteria were re-do surgery and concomitant cardiac surgery. Patients were randomized to minimally invasive and standard group in 1:1 ratio. On the day of admission, on the 7th postoperative day and 3 months postoperatively, the patients underwent pulmonary function testing and one-minute...

The thesis titled The quality of life among hearing impaired people focuses on the current issue regarding the assessment of the quality of life in adult hearing impaired people in the Czech Republic. The conceptual basis of the submitted work is the current professional paradigm, with the emphasis on well-being in the lives of individuals with specific needs. The text deals with the multidimensional character of the concepts of the quality of life and the quality of life relating to health. It illuminates the subjective and the objective part of this broad and current concept. One theoretical chapter focuses on the area of hearing impairment in adult people in connection with the aspects which are bound to the quality of life in this part of the population. Mentioned are the personality traits of a hearing impaired person and the current social dilemma, which is connected to hearing loss, and is projected in the overall assesment of the quality of life of the people with this sensory handicap. One of the sub- chapters of this part of the text focuses on the key factors which influence the personal experience of life quality in the case of hearing loss. The research part of the work deals with method, continuation and assesment of the executed quantitative and qualitative research investigation. In...

Contexte : L'absence d'un ensemble de valeurs permettant le calcul d’années de vie ajustées par la qualité (AVAQ) est une limite importante lorsqu'il s'agit d'établir la valeur des traitements émergents pour traiter l'allergie alimentaire. Pour être valables, les AVAQ doivent être calculées à partir de questionnaires adaptés à la population cible en raison des déficits et des préférences variables selon les populations et les maladies, ce qui n'était pas le cas dans les études précédentes en allergie alimentaire. L'objectif de cette étude était d'établir un ensemble de valeurs de préférence pour le questionnaire générique SF-6Dv2 pour le calcul de l'utilité dans la population canadienne atteinte d'allergies alimentaires. Méthodes : Deux cent quatre-vingt-quinze parents de patients âgés de 0 à 17 ans et 154 patients âgés de 12 ans et plus atteints d'allergie(s) alimentaire(s) ont été recrutés en clinique et en ligne. Les participants ont été sollicités à remplir un questionnaire en ligne autoadministré comprenant des questionnaires génériques de qualité de vie reliée à la santé. Différents états de santé décrits par le SF-6Dv2 ont été évalués à l'aide d'exercices d’arbitrage temporel et de choix expérimentaux discrets. Les données issues de ces techniques d'élicitation ont été combinées à l'aide du modèle de régression hybride. Résultats : Deux cent quarante et un parents et 125 patients ont réalisé 3904 exercices d’arbitrage temporel et 5112 choix expérimentaux discrets. La désutilité a été estimée pour chaque niveau de chaque dimension du SF-6Dv2. Les valeurs d'utilité calculées à partir de l’ensemble de valeurs de préférences établi étaient en moyenne inférieures de 0,15 (IC à 95 %: 0,12-0,18) et corrélaient faiblement (R2=0,46) avec celles dérivées du questionnaire générique EQ-5D-5L dans la même cohorte. Conclusion : Un ensemble de valeurs de préférence représentatif des patients et familles atteints d'allergies alimentaires a été déterminé à partir du questionnaire générique SF-6Dv2. Cet ensemble de valeurs de préférence adapté contribuera à améliorer la validité des futures estimations d'utilité dans cette population pour l'évaluation des traitements émergents ayant potentiellement un impact sur la qualité de vie reliée à la santé, mais étant parfois coûteux. / Background: The lack of a value set allowing the calculation of quality-adjusted life-years (QALY) is an important limitation when establishing the value of emerging therapies to treat food allergy. To be valid, QALYs must be calculated from questionnaires adapted to the target population because of varying deficits and preferences across populations and diseases, which was not the case in previous studies. This study aimed to develop a Short-Form Six-Dimension version 2 (SF-6Dv2) preference value set for the calculation of health utilities from the Canadian food allergic population. Methods: Two hundred ninety-five parents of patients aged 0-17 years old and 154 patients aged 12 years old and above with food allergy were recruited in the clinic and online. Participants were asked to complete a self-administered online questionnaire including generic health-related quality of life questionnaires. Various health states described by the SF-6Dv2 were valued with time-trade-off and discrete choice experiments. Data from elicitation techniques were combined using the hybrid regression model. Results: A total of 241 parents and 125 patients performed 3904 time trade-off and 5112 discrete choice experiments. Utility decrements were estimated for each level of each SF-6Dv2 dimension. Utility values calculated based on the validated preference set were on average 0.15 lower (95% CI: 0.12-0.18) and were poorly correlated (R2=0.46) with those derived from the EQ-5D-5L generic questionnaire in the same cohort. Conclusion: A representative preference value set for patients with food allergy was determined using the SF-6Dv2 generic questionnaire. This adapted preference value set will contribute to improve the validity of future utility estimates in this population for the appraisal of upcoming potentially impactful but sometimes costly therapies.

This work deals with effectiveness of coeliac disease management. It is a model case of chronic disease management. The analytical framework of this work is the multilevel Innovative Care for Chronic Conditions Framework. Crucial is the interaction between health care team that represents health care system, community partners and patients with their families. In the case of coeliac disease it is necessary to include also the role of representatives of market with gluten free products. The interaction of these participants takes place in wider political context, whose state influences this interaction fundamentaly and reflects so in final results - state of patients and quality of their live. Using the evaluation of the quality of life tool SF-36, it has been ascertained, that the quality of life of coealiac patients is lower in comparison with European standard of healthy population and that the causes of the problem have to be searched and systematically removed at all levels of the system of chronic health care. The findings validate the theoretic presumption, that the chronic health care is still considerably underestimated and that it does not reply to the needs of chronic ill patients, which reflects just on general quality of life.

No description available.

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients’ informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers’ burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients’ CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (n = 249) were collected. Patients’ functional status and disease severity were evaluated using the Barthel Index, the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) and the King’s Stages for ALS. The caregivers’ burden was recorded by the Zarit Burden Interview (ZBI). Comorbid anxiety and depression of caregivers were assessed by the Hospital Anxiety and Depression Scale. Additionally, the EuroQol Five Dimension Five Level Scale evaluated their health-related quality of life. The caregivers’ burden was high (mean ZBI = 26/88, 0 = no burden, ≥24 = highly burdened) and correlated with patients’ functional status (rp = −0.555, p < 0.001, n = 242). It was influenced by the CGs’ own mental health issues due to caregiving (+11.36, 95% CI [6.84; 15.87], p < 0.001), patients’ wheelchair dependency (+9.30, 95% CI [5.94; 12.66], p < 0.001) and was interrelated with the CGs’ depression (rp = 0.627, p < 0.001, n = 234), anxiety (rp = 0.550, p < 0.001, n = 234), and poorer physical condition (rp = −0.362, p < 0.001, n = 237). Moreover, female CGs showed symptoms of anxiety more often, which also correlated with the patients’ impairment in daily routine (rs = −0.280, p < 0.001, n = 169). As increasing disease severity, along with decreasing autonomy, was the main predictor of caregiver burden and showed to create relevant (negative) implications on CGs’ lives, patient care and supportive therapies should address this issue. Moreover, in order to preserve the mental and physical health of the CGs, new concepts of care have to focus on both, on not only patients but also their CGs and gender-associated specific issues. As caregiving in ALS also significantly influences the socioeconomic status by restrictions in CGs’ work lives and income, and the main reported needs being lack of psychological support and a high bureaucracy, the situation of CGs needs more attention. Apart from their own multi-disciplinary medical and psychological care, more support in care and patient management issues is required.