Observer-reported cognitive decline in out-of-hospital cardiac arrest survivors and its association with long-term survivor and relative outcomes.

AIM: Long-term cognitive decline after out-of-hospital cardiac arrest (OHCA) is still poorly understood. This study describes long-term observer-reported cognitive decline among Danish OHCA survivors, including differences in years since the event, and investigates characteristics and self-reported outcomes associated with observer-reported cognitive decline. METHODS: Adults who survived an OHCA from 2016 to 2019, and their relatives, completed the national DANish Cardiac Arrest Survivorship survey. Relatives completed the Informant Questionnaire on Cognitive Decline in the Elderly, Cardiac Arrest version (IQCODE-CA), the Hospital Anxiety and Depression Scale (HADS) and the World Health Organisation-Five Well-being index; and survivors completed the Two Simple Questions (everyday activities and mental recovery), the Modified Fatigue Impact Scale, HADS, and the Short World Health Organisation Disability Assessment Schedule 2.0. Potential associations between survivor characteristics and the IQCODE-CA were investigated using a multivariable logistic regression model. Self-reported outcomes among survivors and relatives, and the association with IQCODE-CA scores were investigated using separate logistic regression models. RESULTS: Total median IQCODE-CA score was 3.04 (IQR: 3.00-3.27), with 47% having possible cognitive decline (score ≥ 3.04), consistent across time groups. Increasing age (OR 0.98, 95% CI: 0.97-0.99) and worse self-reported mental and physical outcomes for survivors and relatives, except 'everyday activities' were significantly associated with possible cognitive decline among survivors. CONCLUSIONS: Nearly half of OHCA survivors may suffer long-term cognitive decline. Worse self-reported mental and physical outcomes among survivors and their relatives are associated with potential cognitive decline emphasising the need for post-OHCA care to include systematic neurocognitive assessment, tailored support and effective rehabilitation.

Considerable gaps and differences in rehabilitation after major lower extremity amputations across regions and municipalities in Denmark - A national survey.

INTRODUCTION: Equal access to healthcare is a fundamental principle in the fully tax-financed Danish healthcare system. This study reveals whether this system lives up to the principle of equal access when it comes to the rehabilitation of patients who have major lower extremity amputations. METHODS: With the aim of exploring possible inequality in rehabilitation for patients having major lower extremity amputation in Denmark, a nationwide electronic survey was conducted in the autumn of 2020, which included all hospitals and municipalities in Denmark. RESULTS: Eighty six percent of hospitals (n = 19) and 97% (n = 95) of municipalities responded. Of the 32% (n = 6) of hospitals and 78% (n = 74) of municipalities that provided prosthesis rehabilitation, the majority (hospitals 50% /municipalities 91%) provided prostheses for <10 patients in 2019, and 36% reported having competencies at only a general level among physiotherapists performing prosthetic training. Psychosocial rehabilitation modalities were lacking overall. CONCLUSIONS: This national study documents pronounced geographic inequality in access to qualified rehabilitation services for the relatively few patients undergoing lower extremity amputations in Denmark. The decentralised organisation of amputation rehabilitation makes it difficult to build and maintain specialist competencies among healthcare professionals. Inconsistent availability of psychosocial rehabilitation modalities of all kinds found in this study points to a need for action particularly among patients not in prosthetic rehabilitation where palliative needs should also be considered.

Does time heal fatigue, psychological, cognitive and disability problems in people who experience an out-of-hospital cardiac arrest? Results from the DANCAS survey study.

AIMS: Out-of-hospital cardiac arrest (OHCA) survivors may suffer short-term fatigue, psychological, cognitive and disability problems, but we lack information on the proportion of survivors with these problems in the long-term. Hence, we investigated these problems in survivors 1-5 years post-OHCA and whether the results are different at different time points post-OHCA. METHODS: All adults who survived an OHCA in Denmark from 2016 to 2019 were identified using the Danish Cardiac Arrest Registry and invited to participate in a survey between October 2020 and March 2021. The survey included the Modified Fatigue Impact Scale, Hospital Anxiety and Depression Scale, "Two simple questions" (everyday activities and mental recovery), and the 12-item World Health Organisation Disability Assessment Schedule 2.0. To investigate results at different time points, survivors were divided into four time-groups (12-24, 25-36, 37-48 and 49-56 months post-OHCA). Differences between time-groups were determined using the Kruskall-Wallis test for the mean scores and Chi-square test for the proportion of survivors with symptoms. RESULTS: Total eligible survey population was 2116, of which 1258 survivors (60 %) responded. Overall, 29 % of survivors reported fatigue, 20 % anxiety, 15 % depression, and 27 % disability. When survivors were sub-divided by time since OHCA, no significant difference was found on either means scores or proportion between time groups (p = 0.28 to 0.88). CONCLUSION: Up to a third of survivors report fatigue, anxiety, depression, reduced mental function and disability 1-5 years after OHCA. This proportion is the same regardless of how much time has passed supporting early screening and tailored post-OHCA interventions to help survivors adapt to their new situation.

Long-term physical and psychological outcomes after out-of-hospital cardiac arrest-protocol for a national cross-sectional survey of survivors and their relatives (the DANCAS survey).

INTRODUCTION: The number of out-of-hospital cardiac arrest (OHCA) survivors is increasing. However, there remains limited knowledge on the long-term physical and psychological problems suffered by survivors and their relatives. The aims of the DANCAS (DANish cardiac arrest survivorship) survey are to describe the prevalence of physical and psychological problems, identify predictors associated with suffering them and to determine unmet rehabilitation needs in order to make recommendations on the timing and content of future rehabilitation interventions. METHODS AND ANALYSIS: The DANCAS survey has a cross-sectional design involving a survey of OHCA survivors and their relatives. OHCA survivors will be identified through the Danish Cardiac Arrest Registry as having suffered an OHCA between 1 January 2016 and 31 December 2019. Each survivor will be asked to identify their closest relative to complete the relatives' survey. Contents of survivor survey: EQ-5D-5Level, Hospital Anxiety and Depression Scale, Two Simple Questions, Modified Fatigue Impact Scale, 12-item WHO Disability Assessment Scale 2.0, plus questions on unmet rehabilitation and information needs. Contents of relatives' survey: World Health Organisation-Five Well-Being Index, Hospital Anxiety and Depression Scale, Informant Questionnaire on Cognitive Decline in the Elderly-Cardiac Arrest and the Modified Caregiver Strain Index. Self-report outcome data collected through the surveys will be enriched by data from Danish national registries including demographic characteristics, circumstances of cardiac arrest and comorbidities. The survey will be completed either electronically or by post December 2020-February 2021. ETHICS AND DISSEMINATION: The study will be conducted in accordance with the Declaration of Helsinki. Surveys and registry-based research studies do not normally require ethical approval in Denmark. This has been confirmed for this study by the Region of Southern Denmark ethics committee (20192000-19). Results of the study will be disseminated via several peer-reviewed publications and will be presented at national and international conferences.

Effects of a Multidisciplinary Residential Nutritional Rehabilitation Program in Head and Neck Cancer Survivors-Results from the NUTRI-HAB Randomized Controlled Trial.

Head and neck cancer survivors frequently experience nutritional challenges, and proper rehabilitation should be offered. The trial objective was to test the effect of a multidisciplinary residential nutritional rehabilitation programme addressing physical, psychological, and social aspects of eating problems after treatment. In a randomized controlled trial, 71 head and neck cancer survivors recruited through a nationwide survey were randomized to the program or a wait-list control group. Inclusion was based on self-reported interest in participation. The primary outcome was change in body weight. Secondary outcomes included physical function, quality of life, and symptoms of anxiety and depression. Differences between groups at the 3-month follow-up were tested. No significant differences were seen in body weight change, but there were overall trends towards greater improvements in physical function (hand grip strength: p = 0.042; maximal mouth opening: p = 0.072) and quality of life ("Role functioning": p = 0.041; "Speech problems": p = 0.040; "Pain": p = 0.048) in the intervention group. To conclude, a multidisciplinary residential nutritional rehabilitation program had no effect on body weight in head and neck cancer survivors with self-reported interest in participation, but it may have effect on physical function and quality of life. Further research on relevant outcomes, inclusion criteria, and the program's effect in different subgroups is needed.

Rationale and design of a randomised controlled trial investigating the effect of multidisciplinary nutritional rehabilitation for patients treated for head and neck cancer (the NUTRI-HAB trial).

BACKGROUND: Eating problems frequently affect quality of life and physical, psychological and social function in patients treated for head and neck cancer (HNC). Residential rehabilitation programmes may ameliorate these adverse effects but are not indicated for all individuals. Systematic assessment of rehabilitation needs may optimise the use of resources while ensuring referral to rehabilitation for those in need. Yet, evidence lacks on which nutrition screening and assessment tools to use. The trial objectives are: 1) To test the effect of a multidisciplinary residential nutritional rehabilitation programme compared to standard care on the primary outcome body weight and secondary outcomes health-related quality of life, physical function and symptoms of anxiety and depression in patients curatively treated for HNC and 2) To test for correlations between participants' development in outcome scores during their participation in the programme and their baseline scores in Nutritional Risk Screening 2002 (NRS 2002), the Scored Patient-Generated Subjective Global Assessment Short Form (PG-SGA SF), and M. D. Anderson Dysphagia Inventory (MDADI) and to assess sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores. METHODS: In a randomised controlled trial, 72 patients treated for HNC recruited through a nationwide survey will be randomised to a multidisciplinary residential nutritional rehabilitation programme or to a wait-list control group. Data are collected at baseline, three and six months. Primary outcome is change in body weight, and secondary outcomes include changes in quality of life, physical function and symptoms of anxiety and depression. Potential correlations between intervention effect and baseline scores in NRS 2002, PG-SGA-SF and MDADI will be tested, and sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores will be assessed. DISCUSSION: This is the first randomised controlled trial to test the effect of a multidisciplinary residential nutritional rehabilitation programme in patients treated for HNC. Recruitment through a nationwide survey gives a unique possibility to describe the trial population and to identify potential selection bias. As the trial will explore the potential of different nutrition screening and assessment tools in the assessment of rehabilitation needs in patients treated for HNC, the trial will create knowledge about how selection and prioritisation of nutritional rehabilitation aimed at patients treated for HNC should be offered. The results may contribute to a better organisation and use of existing resources in benefit of patients treated for HNC. TRIAL REGISTRATION: The trial is registered by The Danish Data Protection Agency (registration 2012-58-0018, approval number 18/14847) and the Regional Committees on Health Research Ethics for Southern Denmark (journal number 20182000-165). ClinicalTrials.gov Identifier: NCT03909256. Registered April 9, 2019.

To eat is to practice-managing eating problems after head and neck cancer.

PURPOSE: The purpose of this qualitative study was twofold: (1) to explore head and neck cancer (HNC) survivors' experiences of everyday life with eating problems after cancer treatment and (2) to explore their experiences of participating in a multidisciplinary residential rehabilitation program with a primary focus on physical, psychological, and social aspects of eating problems after treatment. METHODS: Semi-structured focus group interviews were conducted with 40 Danish HNC survivors who participated in a 5-day residential rehabilitation program with follow-up after 3 months. The transcribed interviews were analyzed through qualitative content analysis. RESULTS: Physical nutrition impact symptoms and unmet needs for support were frequent. Participants experienced a feeling of loss due to impaired eating abilities. Eating had become an obligation or a training situation, and the eating problems challenged the relationship with their relatives when well-meaning encouragement was perceived as a pressure. Social eating was a challenge, and this often led to social withdrawal. The residential program was a safe and supportive environment to practice eating skills, and participants benefited from meeting peers. The program provided participants with knowledge and skills that many of them had been missing during and after treatment. CONCLUSIONS: Eating problems after treatment have substantial effects on the everyday life of HNC survivors. A multidisciplinary residential rehabilitation program may be beneficial to meet their rehabilitation needs. IMPLICATIONS FOR CANCER SURVIVORS: The results are useful for future planning of rehabilitation services and clinical studies that may contribute to improving current clinical practice and benefit HNC survivors.

[Specialized palliative care in Denmark lacks capacity and accessibility].

Specialized palliative care (SPC) has a core task in providing palliative care to patients and the families of patients suffering from life-threatening diseases. SPC-units also support the generalist palliative care level. In spring 2016, Denmark had a capacity of 55 units comprising hospices, palliative care teams and palliative hospital wards, which is an insufficient number according to the European Association for Palliative Care recommendations. Despite many non-cancer deaths, 96% of the patients receiving SPC have cancer. The accessibility to SPC is unequally distributed across the regions.

Prediction of rehabilitation needs after treatment of cervical cancer: what do late adverse effects tell us?

PURPOSE: Women treated for cervical cancer with radiotherapy and chemotherapy have reported serious bowel, vaginal, and sexual late effects. The purpose of this study was to describe late adverse effects, health-related quality of life, and self-efficacy in a representative Danish cervical cancer population in order to describe rehabilitation needs. METHODS: Women, mean age 55 years, treated for cervical cancer from January 2010 to July 2013, who were alive and without known relapse/metastases were included in this cross-sectional study. EORTC QLQ C30 and CX24 and self-efficacy questionnaires were sent to all participants. RESULTS: The participation rate was 85/107 (79%). Participants below 45 years had significantly more menopausal symptoms and lower body image scores compared to elderly women. The frequency of participants with menopausal symptoms decreased with time since diagnosis. Symptom experience was significantly higher in participants with locally advanced disease than in those with local disease. Self-efficacy was significantly lower in participants with locally advanced disease. The incidence of lymphedema was significantly higher among participants who were obese. Multiple analyses showed impaired quality of life, e.g., a lower body image and self-efficacy score, correlated with increasing BMI. Women who had surgery had greater risk of lymphedema, and women who received chemotherapy during treatment had a lower quality of life. All but one received radiotherapy. CONCLUSION: This study found that young, obese survivors with locally advanced cervical cancer and survivors who received chemotherapy may have a serious risk of developing late adverse effects; thus, rehabilitation should target these needs.

[Multidisciplinary rehabilitation can motivate obese breast cancer survivors to lose weight].

Accumulating evidence suggests that obesity has a negative impact on breast cancer survivors. In this project we developed and tried out a residential 6 + 3 days rehabilitation programme with focus on weight reduction for breast cancer survivors. The key focus was to work with their motivation to change habits by use of cognitive therapy tools. It seems that this residential rehabilitation stay can motivate obese breast cancer survivors to change habits and lose weight. In all the 42 women with complete data lost 6.1 kg in average.

Data collected on maternal dietary exposures in the Danish National Birth Cohort.

Recent research suggests that the diet consumed in, or shortly before, pregnancy can potentially lead to maldevelopment and diseases in the offspring, which may become apparent at any time from the embryonic stage until old age. For example, maternal diet may affect the chance of twinning (and associated complications), malformation risk, brain development, and the offspring's fecundity and risk of contracting cardiovascular diseases and cancer in adult life. Prospectively designed longitudinal studies with sufficient size and data quality are much needed to substantiate or refute these hypotheses. At present, the Danish National Birth Cohort is likely to be the largest epidemiological database containing extensive information on maternal dietary exposures. By October 2002, 100 000 women had been recruited in early pregnancy, for long-term follow-up of themselves and their offspring. The present paper details the information available in the database on early nutritional exposures with emphasis on maternal dietary intake. We also present distributions of selected nutritional exposures.

Pica in pregnancy in a privileged population: myth or reality.

BACKGROUND: In the literature pica is reported to be prevalent in pregnant women. Most studies have focused on less privileged populations, but is pica prevalent among privileged pregnant women? METHODS: 100,000 pregnant women in the Danish National Birth Cohort were asked about pica in a food frequency questionnaire mailed in gestation week 25. RESULTS: The response rate of the questionnaire was 70% of Danish National Birth Cohort participants. Only 14 women reported to have eaten substances that were clearly not foods, i.e. 0.02% had pica in this cohort of well nourished Danish women. CONCLUSION: It seems that, in privileged populations, pica is more a myth than a reality.