Feasibility and impact of a physical exercise program in patients with advanced cancer: a pilot study.

OBJECTIVE: Our aim was to investigate the feasibility of completing an exercise program in patients with advanced cancer and to obtain preliminary data of its impact on physical and quality of life (QoL) outcomes. METHODS: We conducted a nonrandomized pilot study. Participants were 26 palliative care patients with advanced cancer (mean age=54.5 years; standard deviation [SD] 8.9 years) of the outpatient clinic of the medical oncology and the urology departments of a medical center in The Netherlands. Participants followed an individually graded group exercise program, consisting of resistance training and aerobic exercise, twice a week during 6 weeks. Feasibility of the training program, muscle strength, aerobic fitness, body composition, QoL, fatigue, and physical role, social, and activities of daily living (ADL) functioning were assessed at baseline and immediately after the intervention. RESULTS: Dropout rate during the training period was 35% due to disease progression. After the training period, based on intention to treat analysis, muscle strength and aerobic functional fitness had increased significantly (p≤0.01). A significant decrease in fat percentage (p≤0.02) was observed. QoL had increased significantly (p≤0.02), as well as social (p≤0.04), physical role (p≤0.01), and ADL functioning (p≤0.05). Fatigue decreased significantly on the Checklist Individual Strength (CIS) and RAND-36 questionnaires (p≤0.02), however not on the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 (p=0.48). No change in physical functioning was observed with the EORTC QLQ-C30 and RAND-36 (respectively, p=0.33 and p=0.09). CONCLUSIONS: These preliminary results show that physical exercise in patients with advanced cancer is feasible. A significant impact was observed on physical and QoL outcomes. These findings need to be confirmed with a larger-scale, randomized controlled trial.

[Terminal care in patients with amyotrophic lateral sclerosis]. / De terminale fase bij amyotrofische laterale sclerose.

Patients with amyotrophic lateral sclerosis (ALS) often fear of dying from suffocation. This fear is also common in relatives and caregivers. Research has, however, shown that ALS patients seldom die from suffocation. More than 90% of all ALS patients die peacefully. Death is mostly preceded by a peracute decrease in consciousness due to hypercapnia caused by alveolar hypoventilation. Mechanical ventilation, especially at night, can reduce the symptoms caused by hypoventilation. However, little by little, the effectiveness of ventilation may decrease to such an extent that it is no longer useful or desirable. Termination of long-standing ventilation requires careful preparation. Intensive guidance of the relevant medical, practical and ethical aspects are necessary. Particularly in the pre-terminal and terminal phases, support given to an ALS patient requires a pro-active attitude on the part of the treating physician. To this end, physicians may seek advice from the Dutch ALS Center, a palliative care consultation team, a hospice physician or a center for home mechanical ventilation.

Role of fear of movement in cancer survivors participating in a rehabilitation program: a longitudinal cohort study.

OBJECTIVE: To study the relationship between fear of movement and perceived global health status and the role of rehabilitation with graded activity in cancer survivors. DESIGN: Longitudinal cohort study. SETTING: Rehabilitation centers. PARTICIPANTS: Cancer survivors (N=1236). INTERVENTION: Twelve-week graded activity rehabilitation program. MAIN OUTCOME MEASURES: Fear of movement (Modified Tampa Scale for Kinesiophobia-Fatigue), fatigue (Functional Assessment of Cancer Therapy-Fatigue), and perceived global health status (European Organisation Research and Treatment of Cancer Quality of Life Questionnaire C30) were measured at baseline and after rehabilitation. We performed multiple linear regression analyses to examine the association between fear of movement and perceived global health status at baseline. Differences between baseline and postintervention scores were assessed with a paired t test and effect sizes (ESs). Hierarchical multiple regression analyses were used to investigate whether changes in fear of movement were associated with perceived global health status. RESULTS: Fear of movement was associated with perceived global health status prior to rehabilitation (P=.001). Only participants with high scores on baseline fear of movement showed a considerable decrease in fear of movement after rehabilitation (ES=-.69; 95% confidence interval [CI], -.80 to -.57); the reduction was largest for fears because of a somatic focus (ES=-.57; 95% CI, -.68 to -.45). Changes in fear of movement because of a somatic focus were related to perceived global health status postintervention (P=.001). CONCLUSIONS: Fear of movement is associated with the perceived global health status of cancer survivors. Fear of movement decreases after rehabilitation with graded activity in high scorers on baseline fear of movement.

[Guideline "Cancer rehabilitation"]. / Richtlijn 'Oncologische revalidatie'.

Initiated by IKNL (Integraal Kankercentrum Nederland), a multidisciplinary guideline for cancer rehabilitation for adult oncology patients has been developed. The guideline describes the rehabilitation care of adult patients with cancer, during and after treatment. The guideline focuses on (a) prevalence of complaints either resulting from cancer or the treatment, (b) detection of these complaints and indicated referral, (c) the intake procedure before cancer rehabilitation, (d) intervention and evaluation within cancer rehabilitation and (e) the importance of patient empowerment. The guideline is directed at all professionals giving care to patients with cancer. It concerns those (such as medical specialists, general practitioners and nurses) who are responsible for detecting cancer-related complaints and for referral to cancer rehabilitation, as well as health care professionals involved in cancer rehabilitation care (such as consultants in rehabilitation medicine, physiotherapists and psychologists). The main goal of the guideline is that every cancer patient or ex-cancer patient with (residual) complaints resulting from cancer or its treatment receives timely and appropriate cancer rehabilitation.

The costs of amyotrophic lateral sclerosis, according to type of care.

Our objective was to estimate the economic burden of patients with amyotrophic lateral sclerosis (ALS) and to examine the effect of treatment in a multidisciplinary ALS treatment centre versus general care on costs and to describe differences in costs according to clinical characteristics. In a cross-sectional study 208 patients with ALS and their caregivers were interviewed and were asked to fill in a cost diary for six months. Patients were divided in groups according to type of treatment they received and according to clinical characteristics (site of onset, severity). The direct healthcare and non-healthcare costs were calculated according to Dutch guidelines for cost analysis in healthcare research, standardized for the year 2003. Ninety-eight patients were included when they had filled in the cost diary for at least three months and were affected for three years or less. Mean monthly costs were 1336 euros for the group receiving multidisciplinary care and 1271 euros for those receiving general care. This study shows that the costs of multidisciplinary ALS care were practically identical to the costs of general care. Earlier study showed that patients receiving multidisciplinary care had a better quality of life; therefore, the present study encourages the formation of multidisciplinary teams of professionals specialized in ALS care to further improve standards of care and QoL of patients suffering from ALS.

Effect of non-invasive ventilation on survival, quality of life, respiratory function and cognition: a review of the literature.

Symptoms of nocturnal hypoventilation may negatively influence the quality of life (QoL) of ALS patients long before respiratory failure ensues. Non-invasive mechanical ventilation (NIV) is considered a treatment option for nocturnal hypoventilation. The primary objective of NIV is improving quality of life (QoL). It may also prolong life by several months. A systematic review of the literature was performed to analyse what is known of the effect of NIV on survival, QoL and other outcome measures. A computerized literature search was performed to identify controlled clinical trials and observational studies of treatment of ALS-associated nocturnal hypoventilation from 1985 until May 2005. Twelve studies fulfilled the inclusion criteria. Four studies were retrospective, seven prospective and in one study randomization was used. All studies reported beneficial effects of NIV on all outcome measures. In seven studies NIV was associated with prolonged survival in patients tolerant for NIV, and five studies reported an improved QoL. In conclusion, studies on the use of NIV in ALS differ in study design and endpoint definitions. All studies suggest a beneficial effect on QoL and other outcome measures (Evidence level Class II-III). Well-designed randomized controlled trials comparing the effect on QoL and survival have not been performed.

Rehabilitation care for patients with ALS in The Netherlands.

BACKGROUND: In the Netherlands, rehabilitation medicine plays an important role in the symptomatic and palliative treatment of ALS patients. Detailed information about the actual care of ALS patients in the Netherlands and about the attitude of consultants in rehabilitation medicine towards the management of this disease was lacking. OBJECTIVE: To obtain detailed information about the rehabilitation care for patients with ALS in the Netherlands. METHODS: We have performed a survey among all consultants in rehabilitation medicine in the Netherlands, using a questionnaire about the organisation of care and the care management of ALS patients. RESULTS: Two hundred eighty one questionnaires were gathered with a response rate of 98%. There were 14 specialised ALS centres spread throughout the country, except in the northwest and southwest. Most consultants worked with an ALS multidisciplinary team and most patients were treated in an outpatient rehabilitation clinic. Follow up visits were performed in most cases 5-6 times per year. The majority of the patients were followed up until death. The Dutch protocol for rehabilitative management in ALS was used in 89% of all treated ALS patients. Follow up and care management was not different in the specialised centres compared with the non-specialised centres. CONCLUSION: In conclusion, this study indicated that the actual care for ALS patients was reasonably well organised in the Netherlands, based on the results and reactions of the consultants in rehabilitation medicine.