National study for multidisciplinary outpatient oncological rehabilitation: online survey to support revised quality and performance criteria.

PURPOSE: More and more people survive cancer, but the disease and its treatment often lead to impairment. Multidisciplinary ambulatory oncological rehabilitation (OR) programs have thus been developed. SW!SS REHA, the organization of major Swiss rehabilitation clinics, has defined ambulatory OR quality criteria for its members (about 50% of the Swiss rehabilitation capacity). However, SW!SS REHA criteria are not fully implemented and/or interpreted differently by different specialties or in different linguistic regions in Switzerland. The aim of our study was to carry out an online survey of existing outpatient programs to define quality criteria for an ideal OR program in Switzerland. METHODS: A mixed methods approach was used for the survey-qualitative and quantitative. The qualitative part consisted of a guided discussion with OR experts and the quantitative part of an online survey. The quantitative part comprised the development and evaluation of an online questionnaire. It served to record the opinions of OR centers in Switzerland on the desired situation of outpatient rehabilitation. RESULTS: Eighteen OR centers and 71 (49.7% response rate) OR actors participated in the online survey. The survey results indicate that some of the SW!SS REHA quality and performance criteria only partially match with the desired OR criteria for Switzerland. Key disparities occur particularly in the program design and structure and specifically around how many interventions are required to constitute an OR program, the extent of standardization versus individualization of the program, i.e., how many and which modules in a program should be obligatory, and finally the duration and intensity of the program. The online survey did not generate any statistical evidence that OR requirements vary significantly between different linguistic regions and among different specialties. CONCLUSIONS: Cancer patients are heterogeneous with respect to cancer type, prognosis, and disability level, such that a standard program cannot be uniformly applied. Therefore, a flexible program is required with few mandatory modules and additional individual modules to achieve the threshold number of modules that would constitute a multidisciplinary OR program. Intensity and frequency of OR needs to consider the health state of the participants. The results indicate a need to modify some of the existing SW!SS REHA criteria to ensure that more patients can gain access and benefit form evidence-based OR interventions. Furthermore, the survey provides important findings so that the existing OR offer can be improved with the goal that OR centers will be able to be quality certified in the future.

Multidisciplinary Outpatient Cancer Rehabilitation Can Improve Cancer Patients' Physical and Psychosocial Status-a Systematic Review.

PURPOSE OF REVIEW: This systematic review aimed to determine the effects of interdisciplinary/multidisciplinary outpatient rehabilitation programmes by looking at physical, psychosocial and return to work status of adult cancer patients. RECENT FINDINGS: There is growing evidence that emphasizes the importance of interdisciplinary/multidisciplinary rehabilitation especially in outpatient care, which addresses the complex and individual needs of cancer patients. Many studies focus on measuring the effect of individual rehabilitation interventions. Randomized controlled trials (RCTs) and before-after studies examining the effects of interdisciplinary/multidisciplinary outpatient rehabilitation programmes were included in this systematic review. The electronic literature search was conducted in MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials and PEDro. The PICO statement was used for selection of the studies. Six randomized controlled trials and six before-after studies were included. Interdisciplinary/multidisciplinary outpatient cancer rehabilitation programmes improved physical and/or psychosocial status of cancer patients. However, non-significant changes in a variety of single physical and psychosocial measures were also common. The findings of the systematic review indicate that interdisciplinary/multidisciplinary outpatient cancer rehabilitation can improve cancer patients' physical and psychosocial status. This review is limited by the narrative approach due to the heterogeneity of outcome measures. To evaluate effects of rehabilitation, better comparable studies are necessary. Further research is needed in regard to long-term outcomes, effects on return to work status and on the associations depending on cancer type.

Continuous deep sedation until death in patients admitted to palliative care specialists and internists: a focus group study on conceptual understanding and administration in German-speaking Switzerland.

BACKGROUND: Continuous deep sedation until death is increasingly used to treat intolerable suffering of terminally ill patients. One of the highest incidences and strongest increases has been observed in Switzerland. Variation in prevalence estimates indicates a potential effect of differences in sedation practice between care settings and professionals. AIM: To explore physicians' and nurses' conceptual understanding of continuous deep sedation and unravel decision-making processes in everyday clinical practice. METHODS: Between June and October 2016, we conducted seven qualitative focus groups with 47 healthcare professionals (21 physicians and 26 nurses) involved in sedation decision and administration. RESULTS: Participants had on average 20 years (range 3-39) of clinical experience, 10 years (range 0-30) of self-reported palliative care experience, and a mean annual number of 5 patients (range 1-20) continuously deeply sedated until death. Continuous deep sedation until death covers a wide spectrum of practices: specialised palliative sedation induced through benzodiazepines to treat refractory symptoms as option of last resort, sedation as comfort therapy with benzodiazepines or opioids, and sedation taken into account as a side effect of gradually increased analgesia. CONCLUSION: We found substantial variation in terminology and definition, indication and medication used for continuous deep sedation until death. To provide optimal symptom management in terminally ill patients, early involvement of palliative care experts as well as financial and regulatory support should be provided to encourage multi-disciplinary collaboration and thus consensus for defining the distinct sedation practices.

Continuous Deep Sedation Until Death-a Swiss Death Certificate Study.

BACKGROUND: In the last decade, the number of patients continuously deeply sedated until death increased up to fourfold. The reasons for this increase remain unclear. OBJECTIVE: To identify socio-demographic and clinical characteristics of sedated patients, and concurrent possibly life-shortening medical end-of-life decisions. DESIGN: Cross-sectional death certificate study in German-speaking Switzerland in 2001 and 2013. PARTICIPANTS: Non-sudden and expected deaths (2001: N = 2281, 2013: N = 2256) based on a random sample of death certificates and followed by an anonymous survey on end-of-life practices among attending physicians. MAIN MEASURES: Physicians' reported proportion of patients continuously deeply sedated until death, socio-demographic and clinical characteristics, and possibly life-shortening medical end-of life decisions. KEY RESULTS: In 2013, physicians sedated four times more patients continuously until death (6.7% in 2001; 24.5.5% in 2013). Four out of five sedated patients died in hospitals, outside specialized palliative care units, or in nursing homes. Sedation was more likely among patients younger than 65 (odds ratio 2.24, 95% CI 1.6 to 3.2) and those dying in specialized palliative care (OR 2.2, 95% CI 1.3 to 3.8) or in hospitals (1.7, 95% CI 1.3 to 2.3). Forgoing life-prolonging treatment with the explicit intention to hasten or not to postpone death combined with intensified alleviation of symptoms was very strongly associated with continuous deep sedation (OR 6.8, 95% CI 4.7 to 9.8). CONCLUSIONS: In Swiss clinical practice, continuously deeply sedated patients predominantly died outside specialized palliative care. The increasing trend over time appears to be related to changes in medical end-of-life practice rather than to patient's clinical characteristics.

Loneliness is adversely associated with physical and mental health and lifestyle factors: Results from a Swiss national survey.

INTRODUCTION: Loneliness is a common, emotionally distressing experience and is associated with adverse physical and mental health and an unhealthy lifestyle. Nevertheless, little is known about the prevalence of loneliness in different age groups in Switzerland. Furthermore, the existing evidence about age and gender as potential effect modifiers of the associations between loneliness, physical and mental health and lifestyle characteristics warrants further investigation. Thus, the aim of the study was to examine the prevalence of loneliness among adults in Switzerland and to assess the associations of loneliness with several physical and mental health and behavioral factors, as well as to assess the modifying effect of sex and age. METHODS: Data from 20,007 participants of the cross-sectional population-based Swiss Health Survey 2012 (SHS) were analyzed. Logistic regression analyses were used to assess associations of loneliness with physical and mental health or lifestyle characteristics (e.g. diabetes, depression, physical activity). Wald tests were used to test for interactions. RESULTS: Loneliness was distributed in a slight U-shaped form from 15 to 75+ year olds, with 64.1% of participants who had never felt lonely. Lonely individuals were more often affected by physical and mental health problems, such as self-reported chronic diseases (Odds ratio [OR] 1.41, 95% confidence interval [CI] 1.30-1.54), high cholesterol levels (OR 1.31, 95% CI 1.18-1.45), diabetes (OR 1.40, 95% CI 1.16-1.67), moderate and high psychological distress (OR 3.74, 95% CI 3.37-4.16), depression (OR 2.78, 95% CI 2.22-3.48) and impaired self-perceived health (OR 1.94, 95% CI 1.74-2.16). Loneliness was significantly associated with most lifestyle factors (e.g. smoking; OR 1.13, 95% 1.05-1.23). Age, but not sex, moderated loneliness' association with several variables. CONCLUSION: Loneliness is associated with poorer physical and mental health and unhealthy lifestyle, modified by age, but not by sex. Our findings illustrate the importance of considering loneliness for physical and mental health and lifestyle factors, not only in older and younger, but also in middle-aged adults. Longitudinal studies are needed in Switzerland to elucidate the causal relationships of these associations.

The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals' emotional well-being: a systematic review.

BACKGROUND: The practice of continuous deep sedation is a challenging clinical intervention with demanding clinical and ethical decision-making. Though current research indicates that healthcare professionals' involvement in such decisions is associated with emotional stress, little is known about sedation-related emotional burden. This study aims to systematically review the evidence on the impact of the inpatient practice of continuous deep sedation until death on healthcare professionals' emotional well-being. METHODS: A systematic review of literature published between January 1990 and October 2016 was performed following a predefined protocol. MEDLINE, EMBASE, PubMed, Cochrane Library, CINAHL, Scopus, and PsycINFO were searched using search terms within "end-of-life care", "sedation", and "emotional well-being". Dissertations and reference lists were screened by hand. Two independent reviewers conducted study selection, data extraction and quality assessment. We abstracted measures of psychological outcomes, which were related to the practice of continuous deep sedation until death, including emotional well-being, stress and exhaustion. We used the GRADE approach to rate the quality of evidence. RESULTS: Three studies remained out of 528 publications identified. A total of 3'900 healthcare professionals (82% nurses, 18% physicians) from Japan (n = 3384) and the Netherlands (n = 16) were included. The prevalence of sedation-related burden in nurses varied from 11 to 26%, depending on outcome measure. Physicians showed medium levels of emotional exhaustion and low levels of depersonalization. Common clinical concerns contributing to professionals' burden were diagnosing refractory symptoms and sedation in the context of possibly life-shortening decisions. Non-clinical challenges included conflicting wishes between patients and families, disagreements within the care team, and insufficient professionals' skills and coping. Due to the limited results and heterogeneity in outcome measure, the GRADE ratings for the quality of evidence were low. CONCLUSIONS: Current evidence does not suggest that practicing continuous deep sedation is generally associated with lower emotional well-being of healthcare professionals. Higher emotional burden seems more likely when professionals struggled with clinical and ethical justifications for continuous deep sedation. This appeared to be in part a function of clinical experience. Further research is needed to strengthen this evidence, as it is likely that additional studies will change the current evidence base.

Medical end-of-life decisions in Switzerland 2001 and 2013: Who is involved and how does the decision-making capacity of the patient impact?

QUESTIONS UNDER STUDY: In Switzerland, the prevalence of medical end-of-life practices had been assessed on a population level only once - in 2001 - until in 2013/14 an identical study was conducted. We aimed to compare the results of the 2001 and 2013 studies with a special focus on shared decision-making and patients' decision-making capacity. METHODS: Our study encompassed a 21.3% sample of deaths among residents of the German-speaking part of Switzerland aged 1 year or older. From 4998 mailed questionnaires, 3173 (63.5%) were returned. All data were weighted to adjust for age- and sex-specific differences in response rates. RESULTS: Cases with at least one reported end-of-life practice significantly increased from 74.5% (2001) to 82.3% (2013) of all deaths eligible for an end-of-life decision (p <0.001). In 51.2% there was a combination of at least two different end-of-life decisions in one case. In relation to discussion with patients or relatives and otherwise expressed preferences of the patient, 76.5% (74.5-78.4%) of all cases with reported medical end-of-life practice in 2013 (2001: 74.4%) relied on shared decision-making, varying from 79.8% (76.5-82.7%) among not at all capable patients to 87.8% (85.0-90.2%) among fully capable patients. In contrast to a generally increasing trend, the prevalence of end-of-life practices discussed with fully capable patients decreased from 79.0% (75.3-82.3%) in 2001 to 73.2% (69.6-76.0%) in 2013 (p = 0.037). CONCLUSIONS: Despite a generally high incidence of end-of-life practices in Switzerland, there remains potential for further improvement in shared decision-making. Efforts to motivate physicians to involve patients and relatives may be a win-win situation.

[Health counseling in primary care doctors' offices: a new wind! The Health Coaching Program of the Swiss College of Primary Care Medicine]. / Conseil santé au cabinet médical: un vent nouveau! Le programme Coaching Santé du Collège de Médecine de premier recours.

The Health Coaching Program facilitates health behavior counseling in all areas of primary medical care: prevention, therapy and rehabilitation, i.e. wherever the patient is the decisive agent of change. Health Coaching gives the patient the main role. The physician becomes his coach. Health Coaching offers skills training and simple algorithms with a colour-coded visual tool to assist patient and physician through the 4 steps of developing awareness, building motivation, preparing a personal health project and implementing it. Health Coaching was tested successfully by 20 family doctors during 12 months: of 1045 patients invited 91% enrolled; 37% completed all four steps; one half achieved a positive behavior change. Acceptance and feasibility were high in physicians and patients. Nationwide dissemination is now in preparation.

[Short time counseling in medical practice for improving health behaviour: problems and solutions]. / Kurzberatung in der Arztpraxis zur Verbesserung des Gesundheitsverhaltens: Probleme und Lösungen.

Health related behaviour is a main determinant of chronic disease. Family physicians have an important role in the support of patients to improve their health behaviour, but relevant barriers should be addressed. In the new "Health Coaching KHM" program, patients and physicians are working as a team in four steps (sensitize - create motivation - plan - act). In this process, physicians' communication skills (which are trained within the program) are of utmost importance. In a pilot study with 20 family physicians and 1045 patients acceptance and feasibility were excellent: Every second participant improved her or his behaviour in the area of choice by at least one (of two possible) categories. For dissemination improving framework is crucial.

Le comportement lié à la santé est un déterminant principal des maladies chroniques. Les médecins de famille jouent un rôle important dans le soutien des patients à ce sujet, mais les barrières doivent être adressées. Dans le nouveau programme «Coaching Santé KHM¼ patient et médecin travaillent ensemble en quatre étapes (sensibiliser ­ motiver ­ planifier ­ prendre action). Dans ce processus, les compétences de communication des médecins (formées au sein du programme) sont essentiellement importantes. Une étude pilote avec 20 médecins et 1045 patients a montré une acceptabilité et faisabilité excellente: La moité des participants a amélioré le comportement dans le domaine choisi d'au moins une catégories (des deux possible). Pour la dissémination la création de conditions favorables est essentielle.

The Swiss Health Literacy Survey: development and psychometric properties of a multidimensional instrument to assess competencies for health.

BACKGROUND: Growing recognition of the role of citizens and patients in health and health care has placed a spotlight on health literacy and patient education. OBJECTIVE: To identify specific competencies for health in definitions of health literacy and patient-centred concepts and empirically test their dimensionality in the general population. METHODS: A thorough review of the literature on health literacy, self-management, patient empowerment, patient education and shared decision making revealed considerable conceptual overlap as competencies for health and identified a corpus of 30 generic competencies for health. A questionnaire containing 127 items covering the 30 competencies was fielded as a telephone interview in German, French and Italian among 1255 respondents randomly selected from the resident population in Switzerland. FINDINGS: Analyses with the software MPlus to model items with mixed response categories showed that the items do not load onto a single factor. Multifactorial models with good fit could be erected for each of five dimensions defined a priori and their corresponding competencies: information and knowledge (four competencies, 17 items), general cognitive skills (four competencies, 17 items), social roles (two competencies, seven items), medical management (four competencies, 27 items) and healthy lifestyle (two competencies, six items). Multiple indicators and multiple causes models identified problematic differential item functioning for only six items belonging to two competencies. CONCLUSIONS: The psychometric analyses of this instrument support broader conceptualization of health literacy not as a single competence but rather as a package of competencies for health.

The "Health Coaching" programme: a new patient-centred and visually supported approach for health behaviour change in primary care.

BACKGROUND: Health related behaviour is an important determinant of chronic disease, with a high impact on public health. Motivating and assisting people to change their unfavourable health behaviour is thus a major challenge for health professionals. The objective of the study was to develop a structured programme of counselling in primary care practice, and to test its feasibility and acceptance among general practitioners (GPs) and their patients. METHODS: Our new concept integrates change of roles, shared responsibility, patient-centredness, and modern communication techniques-such as motivational interviewing. A new colour-coded visual communication tool is used for the purpose of leading through the 4-step counselling process. As doctors' communication skills are crucial, communication training is a mandatory part of the programme. We tested the feasibility and acceptance of the "Health Coaching" programme with 20 GPs and 1045 patients, using questionnaires and semistructured interviewing techniques. The main outcomes were participation rates; the duration of counselling; patients' self-rated behavioural change in their areas of choice; and ratings of motivational, conceptual, acceptance, and feasibility issues. RESULTS: In total, 37% (n=350) of the patients enrolled in step 1 completed the entire 4-Step counselling process, with each step taking 8-22 minutes. 50% of ratings (n=303) improved by one or two categories in the three-colour circle, and the proportion of favourable health behaviour ratings increased from 9% to 39%. The ratings for motivation, concept, acceptance, and feasibility of the "Health Coaching" programme were consistently high. CONCLUSIONS: Our innovative, patient-centred counselling programme for health behaviour change was well accepted and feasible among patients and physicians in a primary care setting. Randomised controlled studies will have to establish cost-effectiveness and promote dissemination.

Birth cohort effects in neurological diseases: amyotrophic lateral sclerosis, Parkinson's disease and multiple sclerosis.

BACKGROUND: Generational differences in disease rates are the main subject of age-period-cohort (APC) analysis, which is mostly applied in cancer and suicide research. This study applied APC analysis to selected neurological diseases: amyotrophic lateral sclerosis (ALS), Parkinson's disease (PD) and multiple sclerosis (MS). METHODS: The analyses were based on Swiss mortality data. Age-stratified data has been available for MS, PD and ALS since 1901, 1921, and 1942, respectively. APC analysis was performed within the framework of logit models. Main effect models were extended by implementing nested effects, i.e. age effects nested in subperiods, in order to account for the fact that age profiles may change for reasons other than generational influences. RESULTS: In preliminary analyses, APC analysis yielded noteworthy birth cohort effects in all three diseases. After implementing nested effects, the birth cohort effects disappeared in ALS, and smoothed out in PD, where they were greater for the generations born before the 1920s. In MS, the birth cohort effects remained stable, and exhibited a peak in cohorts born in the 1910s and 1920s. CONCLUSIONS: APC analysis yielded some evidence for birth cohort effects, i.e. predisposing risk factors that may change in historical terms, in MS and PD, but probably not in ALS.