Self-managing physical and mental health: A qualitative study on older adults' views and support needs in the Netherlands.

To help older adults stay healthy and independent, different stakeholders have developed self-management programmes that aim to support older adults in maintaining or improving physical and mental health. These programmes do not always match older adults' needs and preferences. The aim of this study was to gain insight into independently living older adults' views and support needs in self-managing physical and mental health. A qualitative study was performed to collect data. Sixteen independently living older adults from the eastern part of the Netherlands were recruited through purposive sampling. The interviews were audiotaped, transcribed verbatim and subjected to thematic analysis. The results demonstrate that older adults who live independently believe that maintaining physical and mental health is an important pre-condition for remaining independent and living a meaningful life. They are positive about their health, tend to keep on going with an optimistic attitude and choose activities that suit them regarding type and intensity. The older adults believe deterioration is a normal part of getting older. They focus on preservation and adapt to their natural decline. However, some older adults struggle with their deterioration but prefer self-management rather than seeking professional support. To reach the target group, it has been suggested that nurses and other healthcare professionals tailor their support to the way older adults view and manage the maintenance of both physical and mental health.

Community nurses' self-management support in older adults: A qualitative study on views, dilemmas and strategies.

Providing self-management support is an appropriate task for community nurses. However, the support of self-management sometimes triggers tensions in practice. The aim of this study was to explore community nurses' views of self-management, the dilemmas community nurses face when providing support of self-management by older adults and the strategies they use to solve these challenges. A qualitative study was performed to collect data. Twenty-one community nurses from the eastern part of the Netherlands were recruited through purposive sampling. The interviews were audiotaped, transcribed verbatim and a thematic analysis was carried out. The results show that community nurses find it difficult to give a clear, definitive description of the concept of self-management. They relate self-management to 'taking control of your own life', 'making your own choices and decisions' and 'being self-reliant'. Situations in which older adults exhibit considerable or little self-direction or self-reliance can lead to conflicts in self-management support, namely: 1) 'striving for optimal health and well-being versus respecting older adults' choices' and 2) 'stimulating self-reliance and self-direction versus accepting a dependent attitude'. Different strategies are applied to resolve these scenarios. In the first case, strategies of 'adapting', 'persuading' and 'taking control' are used, and for the second case 'empowering', challenging' and 'tolerating' are used. Creating a clear and shared understanding of 'self-management' and facilitating community nurses to reflect on their dilemmas and strategies might help them in supporting self-management by older adults.

Barriers to ideal palliative care in multiple care settings: the nurses' point of view.

BACKGROUND: Nurses and certified nursing assistants (CNA) have a crucial role in 24/7 continuity of palliative care for many vulnerable patients and families, however, their perspective has been largely omitted in reported barriers to palliative care. AIM: To describe barriers to ideal palliative care that are specific to nurses and CNAs working in all care settings. METHODS: A cross-sectional, online survey was distributed to members of the Dutch Nurses' Association. FINDINGS: Almost 50% of the participating 2377 nurses and CNAs experienced more than five barriers to ideal palliative care in their work situation; nurses and CNAs employed in regional hospitals, mental healthcare and nursing home settings encountered more barriers than those working in other settings. CONCLUSION: The three most common barriers were: lack of proactive care planning, lack of internal consultation possibilities and lack of assessment of care recipients' preferences and needs for a seamless transition to another setting.

Intimacy and sexuality in women with breast cancer: professional guidance needed.

BACKGROUND: Approximately 60-70% of breast cancer survivors experience sexuality problems resulting from treatment. This study investigated information and communication preferences with professionals on the topic intimacy and sexuality of women diagnosed with breast cancer. METHODS: Members of the Dutch Breast Cancer Patient Association were surveyed regarding their experiences and preferences about information on intimacy and sexuality. An online questionnaire was developed that included five close-ended and one open-ended question regarding: information received; type of professional preferred; method and timing of communication on the topics of intimacy and sexuality. Quantitative data were analysed using descriptive statistics. A deductive framework analysis was performed on the open-ended answers to enrich the data of the close-ended questions. RESULTS: In total, 667 female breast cancer (ex-)patients participated. In 46% of the women, the information received matched their needs. Most women preferred to receive information about the impact on intimacy and sexuality from a nurse (66.4%) or primary doctor (27.9%). The preferred method of communication was a conversation with a professional together with their partner (51.6%) or a personal conversation with a professional. Respondents emphasized the importance of appropriate timing of information, preferably at least shortly after the treatment started (45.1%). CONCLUSIONS: This study shows that intimacy and sexuality should be repeatedly included in consultations, at every stage of the disease but especially shortly after treatment started. Women with breast cancer expect that professionals (preferably nurse or primary doctor) initiate this subject via a personal conversation (alone or with their partner).

Improved body weight and performance status and reduced serum PGE2 levels after nutritional intervention with a specific medical food in newly diagnosed patients with esophageal cancer or adenocarcinoma of the gastro-esophageal junction.

BACKGROUND: The majority of cancer patients loses weight and becomes malnourished during the course of their disease. Metabolic alterations and reduced immune competence lead to wasting and an increased risk of infectious complications. In the present study, the effect of a nutritionally complete medical food, which is high in protein and leucine and enriched with fish oil and specific oligosaccharides, was investigated on immune function, nutritional status, and inflammation in patients with esophageal cancer and compared with routine care. METHODS: In this exploratory double-blind study, 64 newly diagnosed esophageal cancer patients were randomized. All patients received dietary counselling and dietary advice. In the Active group, all patients received the specific medical food for 4 weeks before the start of anticancer therapy. In the routine care control arm, patients with <5% weight loss received a non-caloric placebo product, and patients with weight loss ≥5% received an iso-caloric control product to secure blinding of the study. The required study parameters of body weight and performance status were recorded at baseline and after 4 weeks of nutritional intervention, and patients were asked to complete quality of life questionnaires. In addition, blood samples were taken for the measurement of several immune, nutritional, and safety-parameters. RESULTS: No effect of the specific nutritional intervention could be detected on ex vivo stimulations of blood mononuclear cells. By contrast, body weight was significantly increased (P < 0.05) and ECOG performance status was improved after intervention with the specific medical food (P < 0.05). In addition, serum Prostaglandin E2 (PGE2) levels were significantly decreased in the specific medical food group and increased in the control group (P = 0.002). CONCLUSIONS: Nutritional intervention with the specific medical food significantly increased body weight and improved performance status compared with routine care in newly diagnosed esophageal cancer patients. This effect was accompanied by significantly reduced serum PGE2 levels.

Problems and needs in patients with incurable esophageal and pancreaticobiliary cancer: a descriptive study.

Patients with incurable esophageal cancer (EC) or pancreaticobiliary cancer (PBC) often have multiple symptoms and their quality of life is poor. We investigated which problems these patients experience and how often care is expected for these problems to provide optimal professional care. Fifty-seven patients with incurable EC (N = 24) or PBC (N = 33) from our outpatient clinic completed the validated "Problems and Needs for Palliative Care" (PNPC) questionnaire and two disease-specific quality of life questionnaires, European Organization for Research and Treatment in Cancer (EORTC). Although patients in general had several problems, physical, emotional, and loss of autonomy (LOA) problems were most common. For these physical and emotional problems, patients also expected professional care, although to a lesser extent for LOA problems. Inadequate care was received for fatigue, fear, frustration, and uncertainty. We conclude that an individualized approach based on problems related to physical, emotional, and LOA issues and anticipated problems with healthcare providers has priority in the follow-up policy of patients with incurable upper gastrointestinal cancer. Caregivers should be alert to discuss needs for fatigue, feelings of fear, frustration, and uncertainty.

Nurse-led follow-up at home vs. conventional medical outpatient clinic follow-up in patients with incurable upper gastrointestinal cancer: a randomized study.

CONTEXT: Upper gastrointestinal cancer is associated with a poor prognosis. The multidimensional problems of incurable patients require close monitoring and frequent support, which cannot sufficiently be provided during conventional one to two month follow-up visits to the outpatient clinic. OBJECTIVES: To compare nurse-led follow-up at home with conventional medical follow-up in the outpatient clinic for patients with incurable primary or recurrent esophageal, pancreatic, or hepatobiliary cancer. METHODS: Patients were randomized to nurse-led follow-up at home or conventional medical follow-up in the outpatient clinic. Outcome parameters were quality of life (QoL), patient satisfaction, and health care consumption, measured by different questionnaires at one and a half and four months after randomization. As well, cost analyses were done for both follow-up strategies in the first four months. RESULTS: In total, 138 patients were randomized, of which 66 (48%) were evaluable. At baseline, both groups were similar with respect to clinical and sociodemographic characteristics and health-related QoL. Patients in the nurse-led follow-up group were significantly more satisfied with the visits, whereas QoL and health care consumption within the first four months were comparable between the two groups. Nurse-led follow-up was less expensive than conventional medical follow-up. However, the total costs for the first four months of follow-up in this study were higher in the nurse-led follow-up group because of a higher frequency of visits. CONCLUSION: The results suggest that conventional medical follow-up is interchangeable with nurse-led follow-up. A cost utility study is necessary to determine the preferred frequency and duration of the home visits.

Recordings of consultations are beneficial in the transition from curative to palliative cancer care: a pilot-study in patients with oesophageal or head and neck cancer.

PURPOSE: There is reluctance in providing incurable cancer patients with recordings of their consultation. In this pilot-study, we explored the feasibility and utility of providing consultation recordings when patients are told a new diagnosis of non-curable cancer, and the impact of the recordings on quality of life and the openness to discuss cancer-related issues in the family. METHOD: Seventeen patients with a new diagnosis of incurable oesophageal or head and neck cancer were randomized to receive a CD (n = 10) or no CD (n = 7) of their consultation in which the diagnosis was told and the decision to provide only palliative care was discussed. Data were collected before consultation and 1 week and 1 month afterwards. After 1 month, patients allocated to the control group were offered to receiving the CD of their consultation as well. RESULTS: No major technical or procedural problems were encountered. Three-quarters of the patients appreciated receiving the CD, which was listened to by 8/10 patients and by 10/10 others in the CD group. After 1 month, two-thirds of the patients in the control group also asked to receive the CD. We found a trend towards a poorer quality of life but an improved openness to discuss cancer-related issues, in the CD group. CONCLUSION: The provision of a CD recording on the consultation in which the transition from a curative to a palliative care stage was communicated is feasible and was well-received by most cancer patients and their family. These findings require however verification in a study with a larger sample size.

A new fully covered stent with antimigration properties for the palliation of malignant dysphagia: a prospective cohort study.

BACKGROUND: Fully covered stents are designed to resist tissue ingrowth that is often seen with partially covered stents. An issue with fully covered stents is the risk of migration. OBJECTIVE: We aimed to determine efficacy, recurrent dysphagia, and complications of the SX-ELLA stent Esophageal HV, which is fully covered to resist tissue ingrowth and has an antimigration ring to withstand migration. DESIGN: Prospective cohort study. SETTING: Two tertiary referral centers. PATIENTS: Forty-four patients with malignant esophageal strictures from inoperable or metastatic esophageal or gastric cardia cancer (n = 42) or lung cancer (n = 2). INTERVENTIONS: Placement of an SX-ELLA stent. MAIN OUTCOME MEASURES: Functional outcome, recurrent dysphagia, complications, and survival. RESULTS: Dysphagia improved from a median score of 3 (liquids only) before stent placement to 1 (ability to eat some solid food) 4 weeks later (P < .001). Twelve of 44 (Kaplan Meier analysis = 40%) patients developed 18 episodes of recurrent dysphagia of which 6 were caused by stent migration and 2 by tissue overgrowth. In total, 14 episodes of major complications developed in 10 of 44 (Kaplan Meier analysis = 29%) patients, 8 of which were caused by hemorrhage. After a median follow-up of 15 months, 39 patients had died (median survival 110 days), 5 (11%) from hemorrhage. LIMITATIONS: Nonrandomized study design. CONCLUSIONS: Dysphagia caused by esophageal cancer can be successfully palliated by placement of a new, fully covered esophageal stent (SX-ELLA). Although this single-wire braided stent with an antimigration ring is supposed to be less traumatic and to reduce migration, this was not substantiated in this study. Further improvements of stent features are needed to achieve the goals set for this study.

A fully-covered stent (Alimaxx-E) for the palliation of malignant dysphagia: a prospective follow-up study.

BACKGROUND: The majority of the currently available metal stents are partially covered to reduce migration risk. However, one of the remaining issues is tissue ingrowth through the uncovered stent parts. OBJECTIVE: To determine efficacy, recurrent dysphagia, and complications of a fully covered stent, ie, the Alimaxx-E stent, and to compare two stent delivery systems, ie, one introducing the stent over a guidewire and one introducing the stent over a small-caliber endoscope. DESIGN: A prospective, follow-up study evaluating a new stent design, with randomization for type of introduction system. SETTING: Three tertiary referral centers. PATIENTS: Forty-five patients with inoperable or metastatic esophageal or gastric cardia cancer. INTERVENTIONS: Stent placement. MAIN OUTCOME MEASUREMENTS: (1) Functional outcome, recurrent dysphagia, complications, and mortality of the Alimaxx-E stent; (2) functional aspects of the delivery system. RESULTS: At 4 weeks after stent placement, the dysphagia score improved in all patients (P < .001). Twenty-two of 45 patients (49%) developed among them 28 episodes of recurrent dysphagia, predominantly stent migration (n = 16). Major complications occurred in 9 of 45 patients (20%), with all 5 early (<1 week) complications (severe pain [n = 3], hemorrhage [n = 1], and fever [n = 1]) occurring in patients in whom the stent was introduced over the endoscope (P = .02). During follow-up, 44 patients died, 3 (7%) from hemorrhage. LIMITATION: The Alimaxx-E stent was not randomly compared with other stent designs. CONCLUSIONS: Placement of Alimaxx-E stents is safe and produces long-term relief of dysphagia, particularly when introduced over a guidewire. The migration rate of the Alimaxx-E stent is, however, unacceptably high, and an adapted stent design is needed.

Efficacy and safety of the new WallFlex enteral stent in palliative treatment of malignant gastric outlet obstruction (DUOFLEX study): a prospective multicenter study.

BACKGROUND: Gastric outlet obstruction (GOO) is most commonly a complication of advanced distal gastric, periampullary, or duodenal malignancy. Palliation of obstruction is the primary aim of treatment in most of these patients. Self-expandable metal stents have emerged as an effective treatment option. OBJECTIVE: Our purpose was to investigate the efficacy and safety of a newly developed enteral metal stent (WallFlex). DESIGN: Prospective multicenter cohort study. SETTING: Three tertiary referral centers (2 academic). PATIENTS: Fifty-one consecutive patients with symptomatic malignant GOO from January 2005 to February 2006. INTERVENTION: Placement of a self-expandable metallic stent (WallFlex). MAIN OUTCOME MEASUREMENTS: The primary end point was defined as improvement of the GOO scoring system for the remainder of the patients' lives. Secondary end points focused on efficacy and safety and global quality of life. RESULTS: The Gastric Outlet Obstruction Scoring System score improved (P < .001), the body mass index decreased (P < .001), and the World Health Organization performance score improved (P = .002) when the score before stenting was compared with the mean score until death. Global quality of life did not improve. Technical and clinical success was achieved in 98% and 84% of the patients. Median survival was 62 days (75% alive at 35 days, 25% alive at 156 days). Median stent patency was 307 days (75% functional at 135 days, 25% functional at 470 days). Stent dysfunction was proved in 7 patients (14%), migration in 1 (2%), and tumor overgrowth or ingrowth in 6 (12%). LIMITATIONS: Lack of a control group. CONCLUSION: Placement of a WallFlex enteral stent in patients with nonresectable malignant GOO is safe and provides a statistically significant and clinically relevant relief of obstructive symptoms with a low need for reintervention.